Taxotere, Carboplatin, Herceptin [Archive]

Cristina19

08-27-2007, 10:00 PM

Greetings Sisters,

I am about to start chemotherapy--TCH--on Wednesday: 6 infusions, separated by 3 weeks. Then, the plan is to continue with Herceptin alone for up to one year. At some point the oncologist will throw Tamoxifen into the mix.

My question: everything! Have any of you been on this particular set of drugs for chemo? Your effects?

I know that everyone reacts differently, but any wisdom will be appreciated.

I asked for TCH (following the advice of a UCLA oncologist who took part in Herceptin studies); he stated that the cardiotoxicity was less with TCH than with Adryamicin. My City of Hope oncologist agreed to this treatment although he had been more "traditional" and had originally planned AC->TH. Both believe that the treatments are equally effective although the TCH is newer.

My diagnosis: out of the blue, no family history, DX at 37 in May 2007. Stage 1, extensive DCIS, 1.2 cm infiltrating ductal carcinoma, all margins and sentinal node negative, ER +, PR -, HER2 +++. Total right breast mastectomy (too much DCIS and too small breast) with immediate free-TRAM reconstruction.

I've done the genetic testing but haven't heard back.

Any support, wisdom will be appreciated.

John21

08-28-2007, 08:05 AM

My wife had this treatment. It was not as bad as a previous treatment. The premeds made things reasonable. The hair loss this time was probably the worst. She made it through with great success. I hope the same for you.

John

madubois63

08-28-2007, 08:15 AM

I did Taxotere, Carboplaten, Herceptin and Femara all at the same time. Within 3 months the mets to my lung were gone and another 3 months of treatment got rid of the mets to the liver. I've been NED since April 2005. I've had othr problems along the way, but this combo worked well for me. I hope it works well for you too!!

Erin

08-28-2007, 08:50 AM

Hi Christina,

Sorry you are here, but you have found a great resource. I had almost the same dx and treatment plan, with the exception of the mast for the extensive dcis. Lots has been written on this site about it. I would love to provide you with more info/opinion, but I am currently typing one-handed cause I crashed my bicycle two days ago and have a sprained finger taped up (Yes, bicycling, and fast enough to crash hard! - You will eventually get our life back!) You may want to also search the site (I always use the advanced search - I can never get the standard search to work) Look under TCH, chemo, etc. Best of luck, keep posting to let us know how you are.

Leslie's sister

08-28-2007, 08:50 AM

My sister had this combo and for the most part, everything went well. The biggest problem she had was not taking the anti nausea medication during the second treatment. She had a terrible time for about four days. She didn't make that mistake again and the rest of the treatments were fine. She described the low points as just feeling blah. Definitely take all the meds your onc gives you to control nausea. Hairloss is almost certain. Anywhere from around two weeks after the first treatment to right after the second treatment. That was another rough time for Leslie. But once she found a wig that she was comfortable with and got used to she was ok. I think that TCH is an awesome combo.

BonnieR

08-28-2007, 10:18 AM

I also am on THC but my "T" is TAXOL...I had no problems during the infusion. I have had two.
But be advised that it takes hours. For the first dose I was in the treatment center for 9 hours!! So bring things that might distract you. Books etc. I brought my journal and art supplies...Although I actually slept part of the time....
The day afterwards I was "wired." I guess from the premeds. But in subsequent days I experienced fatigue and what felt like bone pain. Occassional nausea. There are medications for all of the potential side effects. Also I was advised to take Glutamine to ward off neuropathy.
You will be given literature explaining the drugs you are taking....
I am having my third treatment next week and still have enough whispy hair to not have to cover my head yet. I used to have very thick hair. I got prepared ahead of time by buying wigs, scarves, etc.
We are all different, of course. And I know you will find great support and advice here. I certainly have. Keep us posted. And keep the faith....
ETA: age may factor into this too. I am 64.....

hutchibk

08-28-2007, 12:49 PM

I also did Taxol, Carbo, Herc... and it was reasonably easy to tolerate. Carbo can do a number on your white cells and bone marrow, but they will follow your CBC closely.

I had Taxotere early on in combo with Adria and Cytoxan. All I remember about Taxotere is that it can "leak" (from the capillaries) into your fingernails and toenails. My infusion nurses told me to use tea tree oil on my cuticles weekly and keep Sally Hanson's Hard as Nails on my nails at all times while in treatment. I had absolutely no discoloration or lifting of the nails, so I guess it worked. I recommend it!

kcherub

08-28-2007, 02:40 PM

Good luck with your TCH! I hope that you find lots of information here, I know I did! I did my 5th (and as of today, FINAL ROUND!!!) of TCH on August 17th. I was slated for 6 rounds, but had some "issues" that they felt warranted not doing the 6th round. We have almost the same diagnosis, except for the DCIS you had. You have a great prognosis, so hang in there!!!

There are a few great TCH threads, if you use the search function with TCH, you will find tons of info on side effects. To be honest, the chemo wasn't what got me--it was the steriods. I had very ugly steroid psychosis for the last 3 treatments, but most people don't get that. I was one of the "lucky" ones. :)

Please, feel free to write me if you have any questions about the TCH regimen. I know how scary it is to start, the fear of the unknown is just awful!

Take care,

Cristina19

08-28-2007, 04:43 PM

Oh my gosh, you all are great. Thank you for responding. I look forward to hearing more.

The steroid I have been given is Decadron 4 mg. I'm only supposed to take it the day before, day of, and day after chemo. The others are strictly anti-nausea, if I'm not mistaken.

Thanks for the Glutamine recommendation. I think I'm more worried about the possible side-effects of chemo than the cancer. None of this has ever seemed "real" to me. My diagnosis came completely out of the blue. I felt healthy; I had no symptoms. I was sent for a diagnostic mammogram for what I described as a fibrous ridge and that's what it was; in the meanwhile, they found everything else.

I've been doing some reading about supplements and have started CoQ10, a coenzyme that has been used to strengthen the heart and has been used in studies with people who are experiencing heart damage/failure. I figure this may offset issues of cardiotoxicity. I'm also looking into Milk Thistle to maintain liver health. These seem to be pretty benign complementary therapies unless anyone has wisdom on this.

Also, this is probably not new to the members of this site, but the substance in Green Tea (EGCG) which works directly with a protein to which Her2 is a "client protein" to block its negative effects. It's worth a read:

http://www.newstarget.com/007972.html

http://www.aicr.org/site/News2?abbr=pub_&page=NewsArticle&id=8997

My infusion time period is slotted for 5 hours so I'm going to be taking lots of reading, my iPod, and most importantly, my Latin textbook. Crazy me: I enrolled in my boyfriend's Latin class (he's a professor and so am I). We keep laughing that the misery of Latin will distract me from the misery of chemo!

Thank you so much.
C.

BonnieR

08-28-2007, 05:13 PM

Christina, I know what you mean about the anticipation (read DREAD!! lol) of the first dose of chemo. They take it really slow initially and first administer drugs to relax and to prevent side effects. And of course they are very vigilant. That is why my first session was 9 hours. Then 7.
The cancer center psychologist told me that when I got the first dose it would be like "popping the balloon of anxiety" and she was right. The fear was far worse than the reality! So far so good.
I have read about supplements and the fact that they are not necessarily "benign". Some can be counterproductive to our treatment so it would be prudent to take those with your doctor's blessing. They are plant based, but so are some chemo drugs, and look how potent they can be.....
Please ask us anything you can think of. It feels good to be able to offer some input even if it is only from the perpective of 2 treatments....
I very much remember how I felt a few short weeks ago....

Melinda

08-28-2007, 09:23 PM

Here is a link to a post I made back in March of this year. I also had TCH and got tons of information from all the sisters her. http://her2support.org/vbulletin/showthread.php?t=27097
I have just finished treatment with the same regiment, so feel free to contact me at
mzerweck1@verizon.net
Would love to help in any way that I can
Melinda

Melinda

08-28-2007, 09:30 PM

Forgot to mention in case you do not have time to read all of these posts...
drink plenty of water even during treatment, ask for a sleepaid because the decadron will wire you, take your anti nausea (zofran or tigan etc)meds each AM BEFORE you need them, and some suggest Biotene to prevent mouth sores. I worked the entire time, neer missing a day, but your body will dicatate what you can and can not do. As a professor, if you plan on working ask for Neulasta to keep your WBC up. Effects normall sow up 2-3 days later. I had my treatments on Thursday so that I could have the weekend to take it easy. You can do this... it is one of the more doable regiments available.
Keep the faith,
Melinda

Catherine

08-28-2007, 09:54 PM

Do try the tea tree oil and Sally Hansen Hard as Nails. I had a lot of problems with my nails and wish I would have known about this. No big deal though. I am fine now and my nails are fine now.

All the best, Catherine

Cristina19

08-29-2007, 08:39 PM

One down, five to go.

I'm sleepy but it's hard to tell what it's from: sitting in a hospital bed all day (10-5)? I'm not so naive to believe that I will feel this "good" tomorrow or the next few days. Right now I just feel very mild aches, so I took the recommended Tylenol. My mouth and eyes are dry (the Benadryl?) and, even though I've been drinking lots of fluids, I feel dehydrated. It may have something to do with the heat out here right now.... We were 102 degrees today.

I'll let you know how the next days go.

Thanks for the support and to Melinda for the reference to the other TCH thread!

xoxo,
Cristina

Melinda

08-29-2007, 08:56 PM

Cristina,
Try to stay positive. Tomorrow is another day. I know everyone goes thru this diffierently but who knows, you may not feel that bad tomorrow. The first treatment is like going into nowhere land. You have no idea what really to expect, and many people expect the worst. After your first week you will have a better idea and it becomes almost 'routine . I used to dread my sense of taste changing, sweets were too sweet and the "metal mouth" I called it just ruined what was what I considered good eating habits, but overall my energy levels maintained on average. It was the neulasta that caused my aches.
Take you anti nausea meds first thing in the AM. Fluids and food to keep your strength. You can do this.
Take care and keep us posted especially if you have any questions.
Keep the faith
Melinda

BonnieR

08-29-2007, 08:58 PM

Christina, glad to hear your first session went well! We are all trudging along together! Just listen to your body the next few days and deal with things as they present themselves. As recommended, stay hydrated. And treat yourself kindly....

dilly

08-29-2007, 09:26 PM

I wish I had found this article when I was first starting out. It's a great summary of the treatments.

http://www.cancerresources.mednet.ucla.edu/5_info/5c_archive_lec/2007/lec_breastcancer_hurvitz.htm

I opted for the AC-TH.

hutchibk

08-29-2007, 09:56 PM

I betting that you are sleepy from the benadryl - I found that I am a real light weight and couldn't do a drip or push (syringe) of beny... it hit my bloodstream too much, too fast, drip knocked me out for about 7-8 hours and a push (which was only done once, as I was a MESS from it) caused me to basically have an out of body experience, heart raced, became somewhat paralyzed, very shaky and RLS kicked in. I finally learned that I could take just a single dose (25mg) via pill and that was all I needed, and even that knocked me out in the chair...

Dehydration is just very normal with chemo - that is always one of my most noticable side effects. Opt for occasional bottles of electrolyte water or Gatorade for the first couple of days after an infusion.

Cristina19

08-30-2007, 02:43 PM

It sounds like the Neulasta may the the biggest culprit in the "flu-like" symptoms that everyone is feeling on day 3 or 4. Is that possible? I'm feeling okay today, day 2.... perhaps "over-medicated," shaky and sleepy. Now I'm off for the Neulasta shot.

Melinda

08-30-2007, 08:43 PM

I used to get my Neulasta shot on a Friday and on Sunday... I was only good for reading the Sunday paper and watching movies... a real couch potato. The good news is that it kept my WBC up to where I could continue treatment the entire time as far as WBC goes. The carboplatin effects your platelets and on round 5 and 6 I had a slight delay... 2 days the first time and 5 days on round 6. There is nothing they can really do for platelets... just let the body build them up again. The first time I thought maybe if I went home and ate half of a cow it would help.... silly me, but the fellas (platelets rejuvemated themselves.) I tell you this because I am the type of person that wanted everything done yesterday... so to find out that there was going to be a delay shocked me and I was beyond annoyed. I didn't know this could h appen. Anyway, everything worked out fine.... becareful when platelets drop "do not run with scizzors".... bleeding and bruising are something one stays away from with this condition.
I made it thruogh to round 3 before my scalp really started to show... and that is when I decided to shave my head. It looked better than having the apperance of walking out of a nuclear power plant plus I felt more in control. Prior to that I wore it like in my picture, then shorter yet and then the GI JANE look. After that it was all over but the razor.
I got a wig from www.paulayoung.com (http://www.paulayoung.com)
I dont care what they say... but for 49.95 you could not beat it. I wore it a couple of months before the heat set in and then switched to a varielty of scarves that complimented my wardrobe. FOr the last 6 weeks I have introduced the retirement village where I work to tennis ball hair... call me Wilson for short as one of our eloquent sisters have suggested. Actually I have had fun being free of scarves and wigs, and feel completely comfortable with it. Its the latest rage, and I am 55.
Keep in touch, you can do this. a positive attitude and a little humor helps and lets not forget all the support you have from all the sisters here!
Melinda

tousled1

08-31-2007, 06:42 AM

Glad you did well with your first treatment. The Neulasta shot can cause bone pain so don't be surprised if your bones start to hurt. The worst part of the treatment I found was the Decadron premed -- wired me up for days and then WHAM like walking into a brick wall. You'll do fine. Just make sure that you drink plenty of fluids.

Gerri

08-31-2007, 07:09 AM

Cristina,

Best of luck to you as you start your journey. You are lucky enough to be receiving treatment at a wonderful cancer center. I too go to City of Hope and am so grateful for the care I received there. I did not receive TCH (I had AC/T, no heart problems) but do have a few suggestions for the Neulasta shot. They sting a lot less if the nurse warms it up by rubbing it between her hands and injecting it VERY slowly. You will find that not all of them will do this automatically. Once I learned the secret I didn't hesitate to ask for these things to be done. Take all the precautionary meds as prescribed - they will get you through the rough times.

Take good care.

fauxgypsy

08-31-2007, 07:58 AM

Christina,
I recently finished 6 months of THC and am now on herceptin and Femara. I have always had my treatments in a recliner. Not too uncomfortable. What I have seen on this board is that while there are some similarities, everyone's response is somewhat different. I am self employed which helped because carboplatin knocked me down for several days. I tottered around like a little old lady for three or four days. I just went with the flow and did what I could. My husband called it carboflatten. Only had it once every four weeks, with the taxol and herceptin. I had them alone for two weeks and then a week off. I did not want to take the nausea meds, I didn't think I was sick enough and my insurance would not pay for the whole prescription for zofran, so I called myself saving it for when it got really bad. (my stepfather died of lung cancer, a year and a half ago and I know bad when I see it, he was so sick) When I talked with my doctor he prescribed Emend as well . It is great. Take the nausea meds , particularly with the carbo. They helped me with the way food tasted as well, particularly the Emend. After the first treatment nothing tasted or smelled right. I really didn't need them after the taxol and herceptin. The premeds I had were standard, I think, tylenol, bendryl, decadron, aloxi, zantac or pepcid and after I changed oncologist, ativan. The benedryl put me down for the count. By bedtime, though, I was wired. I tried sleeping pills, nothing seemed to work so finally I just learned to ride it out. It is a great time to catch up on your email, houskeeping, etc. When it wore off, I would nap and be better by the next evening. I decided once that I would get them to lower my dose of decadron and I payed for it.

I drank Danactive yogurt that is supposed to boost your immune system several times a week and I did not have many problems with dairrhea. My white blood count did not get low enough to need Neulasta ( I think from what I have seen it depends on your insurance whether you get that or not). I did have to have arinesp or procrit for my red cells (one oncologist used one , the other used another.) But my counts did not drop enough to prevent me from having chemo. My platelets got really low once but they picked back up. The whole experiece was not as bad as I had thought it would be, sort of like having the flu once a month and a small virus the other two weeks, Weak and achy. I am on herceptin and Femara now and I just had a mastectomy in August but so far I am having no side effects from them. I haven't completely gotten back to normal but I am regaining my stamina. I have started physical therapy because of the mastectomy, I have an impinged nerve. I think it helped that I always did as much as I could, not to the point of exhausting myself, but to keep my strength. I continued to do faux finishes up until the middle of June, worked in my studio, yard, garden (using gloves), always listening to my body and resting when I needed to. We canned bushels of tomatoes and made salsa, put corn and peas in the freezer.
They used to think that if you were on chemo you shouldn't do anything and then they figured out that that was why people were getting weak and losing muscle mass. When I was first diagnosed ( supposedly stage 4) the doctor suggested I should go on disability. I sat around and moped for a few days. I was getting depressed just thinking about it. Then I decided that I was going to keep my life, stage four or not. I started scheduling work again, again using common sense.

My hair and eyebrows, which never left completely started growing back even before Chemo had ended. Eyelahes are a little slower. It has been way too hot here for a wig so I just put on a hat or a do rag, McCalls has a pattern and they look really cool in a fun print. I occasionally put on eyebrows and eyeliner, but vanity is not my strong suit so a lot of times I didn't bother. If you need makeup, look up the Look Good , Feel Better program in your area. You should start with all new makeup when you start chemo. Sunscreen was important because with the carboplaten, the sun made me itch. I found a no-ad one that was 45 spf, made for babies. It was really good.
I guess what I am saying is that your life can go on. Only you will know what you can and can't do. But don't make it the focus of your life, keep the things that give you joy and a life outside this cancer. Stay as active as you can and learn as much as you can. Eat as healthy a diet as you can. I neither lost or gained weight during chemo and that is what you need to aim for. This is great place for you to be. ANd remember-
In the world of destiny, there are no statistics!

Leslie

janet11

08-31-2007, 08:06 AM

I finished 6 rounds of taxotere, carboplatin, and herceptin in January 2007. The thing that helped me the most: Biotene mouthwash!!! For a few days each cycle, I was rinsing about every 15 minutes and brushing after eating ANYTHING. This was to help reduce the disgusting taste that the Taxotere gave me.

One interesting "side effect": after chemo, I had the BEST dental checkup I've had in years (*smile*).

I found very soon after starting TCH that some foods bothered me, and that I developed reflux. Per my onc, I used over-the-counter anti-reflux meds daily throughout chemo. And some foods, well, I ended up giving up because they either tasted bad or upset my stomach. But most of that came back after chemo and wasn't a major problem.

Good luck!

Janet

Cristina19

08-31-2007, 08:06 AM

Thank you, ladies, for your presence here. I get myself to the computer first thing in the morning to get your wisdom. Your humor and strength is priceless.

Everything you've said is right on the mark. I'm not really feeling the Neulasta shot yet but I just got it yesterday. The nurse was great: she warmed it in her hands and gave it really slowly, just like you said, Gerri; perhaps we had the same nurse!

I have a newfound love for nurses. I know some can be less personable but every one I've been with at COH has treated me like their daughter/best friend/cute puppy. That kind of TLC is so wonderful.

The Decadron is something else. I need to clarify what I'm supposed to be taking because my perscription says 1 4mg tab in the am and another in the pm; my sheet from the doctor says to double it up the day of Neulasta. Yesterday night, I took two tabs as instructed and have felt jittery every since. I slept alright, waking every two hours or so, but went right back to sleep.

Melinda, I love your sense of humor. Thank you for reminding me to stay "up." As for the hair: it has been so hot in my neck of the woods, I was almost looking forward to cutting it all off last night! But, perhaps I'll just cut it shorter and shorter as you did (if the treatment will allow for it). I have shopped for a wig, and guess what, my head is big. (That sounds to bad!) So all of the average-sized wigs don't fit. I've got to shop for a "large-cap" wig which are harder to come by but I picked up a tlc catalogue from the American Cancer Society and they have sizes and pretty nice styles. I'll let everyone know the quality when I see it. The synthetic wigs don't look so bad I suspect; and, anyway, I'm probably going to be more comfortable in simple/cool headcoverings until it cools off here in Los Angeles.

xoxo,
cristina

Cristina19

08-31-2007, 08:25 AM

Leslie, I think I read a number of postings from you under the "sexy cancer" thread. I didn't see the program because I "fired" my cable a few years ago. Why pay tons of money for one good channel? So I'm left with 3 PBS channels, lots of foreign language, and bad-mainstream channels. Anyway, the "sexy cancer" thing: bad title. If I'm correct from your postings, I'm with you. There's nothing sexy about this disease. We hope that we can find our way back to confidence and sense of self through this.

I'm blessed that I have a very supportive family, co-workers, friends, and most of all, a good partner. He has given me so much reassurance. I found myself again after a nasty divorce two years ago and was blessed to have someone wonderful come into my life. He has never made me feel "less-than."

What we go through, though, is less about what other people think or see than what we see. I opted for a free-tram reconstruction (which is a doozie of a surgery) and found that my shock and emotional trauma didn't come from the lost breast but the lost tummy and belly-button that I knew as my own. I didn't have so much to "donate" to begin with and now I'm stretched tight as a board. I couldn't lie down or stand up straight for 3 weeks. Where did my normal, pretty contours go? The scars: someone in another post said, "I look like a patchwork quilt." I look like a rag-doll.

I'm hoping that as time goes by and I have my follow-up surgery, everything will look more "normal."

At 37, having felt as healthy as a horse, having come back around after other trials, this has been a blow. You all know this.

When people commiserate with me, I tell them always the same thing: When life hits you with something like this, you have two choices: you sink or swim. What choice do we really have?

Maybe that show should have been called "Crazy Cancer, Strong Women."

c.

Gerri

08-31-2007, 02:07 PM

Cristina,

Better check on the dosage for the Decadron - I never doubled the dose on the day I received Neulasta. As for the Neulasta, since you haven't noticed anything yet, you probably won't have a problem - I never did. If you are concerned about mouth sores, the pharmacy at COH makes its own concoction. You need an Rx from your onc to get it. I used it religiously morning and night and never got a mouth sore.

How far are you from Upland? I got my wig at a salon called 'Salon Mez A Me'. The owner (Jennifer Guerra) is wonderful and will do everything she can to fit you with the right wig. I paid about $170 for mine and wore it for almost 10 months. It looked great the entire time. Most people had no idea I was weraring a wig.

Like I said before, you are in great hands. I love COH and hope that someday I can pay back what they have given me.

Take care and STAY COOL!

Cristina19

08-31-2007, 03:56 PM

Gerri,

Thank you so much for the comments above. I confirmed with the nurses this morning that the "doubling up" on Decadron was NOT what the doctor ordered. I don't know why it was originally indicated on my medication schedule except that I was orignally scheduled to do AC-TH.

Anyway, no more of that! I have felt shaky ever since.

As for the Neulasta: I do feel a little achy in the joints and muscles seem warm. I hope it stays mild.

I'm going to try to do the Walk for Hope in October at COH. My "team" has a page if you're interested in walking!

C.

Gerri

08-31-2007, 04:07 PM

Cristina,

I am planning on doing the Walk for Hope in October. I did it last year and raised $2,300. I need to get things going for this year and see if I can raise money again. Let me know what your Team page is so I can take a look.

Gerri

Cristina19

08-31-2007, 04:59 PM

My "Walk for Hope" page:

http://www.cityofhope.org/fundraising/vfs/team/4923/CRISTINA'S%20TEAM

kcherub

08-31-2007, 05:07 PM

Cristina,

How are you feeling today?

Take care,

Cristina19

08-31-2007, 06:34 PM

Krista,

Hello! Thank you for asking. I feel a little achy today in the joints and a little sleepy and my muscles feel a little sore. So far, it's only a "little" everywhere. I hope it stays mild. I was actually tempted to go to the pool for a light dog-paddle. It sounded like a nice idea for the aches. Anyone out there try a little swimming, yoga or walking to alleviate symptoms?

I read your bio above and see that we have a very similar diagnosis. Young age, Stage 1, etc. I will look forward to hearing about your journey. Apparently, the doctors have received results from my genetic testing but I have to go in for an appointment. Uggg! Another appointment in this 100+ humid weather!

I have never had children. I thought it would happen someday but it doesn't seem to be in the cards. I went through an unpleasant divorce in 2004 and have since met the most wonderful man. I just don't see babies in the future after Tamoxifen.

I suspect that these issues have come up in the various threads.... I wonder what it will be like and how it will effect my life/body/relationship to be pushed into menopause, perhaps permanently.

I tend to go to the "worst case scenario," so I'm always eager to hear the experiences of others.

Best,
C.

Cristina19

08-31-2007, 06:39 PM

By the way, what kind of steroid dosage were you on? I am only to take Decadron (4 mg), twice a day, the day before, the day of, and the day after chemo.

Also, did you see the recommendation for Glutamine in one of the above posts? I did a little research and see that there have been some studies of the supplement given during chemo treatments to help against neuropathy.

BonnieR

08-31-2007, 06:57 PM

Christina, good hearing from you..
regarding the Glutamine, my research, including the ACS, indicates that the recommened dose is 10 Gm three times a day for about 4 days after chemo. But it is always best to check with your onc. They all seem to do things a little differently.
for instance I am not receiving Decadron except for what is given in my infusion. I guess my blood count is still okay because I am not receiving any other meds yet...
Janet, you are right about the Biotene. I am having mouth sores but my treatment center/onc staff only could recommend salt water gargle. They seemed unfamiliar with anything else. What is the concoction that COH mixes??? I should check with the pharmacy at the cancer center...
The physical therapist told me that swimming was always a safe and recommended exercise for us....yoga too. I hear of people who attend throughout treatment. But again, get clearance. I am sure people with more experience will reply to your questions...
Keep the faith...

ETA: off topic, but KCHERUB, is that the little boy you mentioned in another thread who used the term "laughingstock"?? LOL

tousled1

08-31-2007, 07:17 PM

If you use the Biotene toothpaste and mouthwash you shouldn't be plagued with any mouth sores. It's much easier to take precautions not to get the mouth sores than to deal with them when they happen. I you get mouth sores your oncologist can give you a prescription for "magic mouthwash." For the neuropathy you should tale Glucosamine/Chondroitan complex - sodium free. You'll notice a difference in about a week of starting it.

Gerri

08-31-2007, 07:34 PM

Cristina,

I go for genetic counseling at COH on Sept 24. My goal this weekend is to stay in the air conditioning and do the dreaded paperwork. Were you able to supply a lot of information? I have bits and pieces but not an extensive background on all of the family members. It would seem that all of that information plays a major role in deciding on whether or not to test. Did you find that to be true?

Good luck with your results. I hope it is good news.

Gerri

08-31-2007, 07:46 PM

Bonnie,

The concoction from COH was called 'Radio Mix'. It had three ingredients - the only one I remember right now is lidocane (darn chemo brain!). It wasn't covered by insurance but it was only about $23 for a big bottle. I used it as a preventative measure and it worked great.

BonnieR

08-31-2007, 08:13 PM

Gerri, thanks. That is enough info to present to the Cancer Center pharmacist and see what they might have to offer......meanwhile, the Biotene is helping alot....

rentrac

08-31-2007, 10:17 PM

Dear Christina,
I was on the Herceptin, Taxol, Carbo combo last year (had Taxotere alone 2 years earlier). I had more side effects from the Decadron and Benadryl, with some hair loss thrown in - though I was left with wisps which I shaved off. The result was the best short hair I've EVER had- My white hair continued growing, then later the dark that had fallen out... so I had a "reverse pelt" of silky white, underlaid with thick dark. That was the best part. The worst was that I developed an allergy to both the Taxol and the Carbo - My 11/12 tx with Taxol, and the final 12/12 with Carbo. Speak up quickly if you start feeling odd... such as chest flutters, sudden skin flushing, sudden rash, or just feeling strange. My chemo nurses were on top of my reactions at once. Got lots more benadryl and decadron, but wasn't any worse for the scare. Don't let my experience scare you, just be aware that it can happen and don't be afraid to question. My motto is "when in doubt, check it out!" Other than that, I just seemed to get a little more fatigued with each treatment. Good luck. You'll be in my thoughts.
Rentrac

BonnieR

09-01-2007, 08:03 AM

Rentrac, thanks for the caution to continue to be alert for allergic reactions. I had assumed that since my first two treatments were uneventful I was home free on that front. I guess we can never let our guard down! It's always something!

Cristina19

09-01-2007, 10:28 AM

Question about allergic reactions. I feel so drugged, nothing seems normal. The Decadron made me shaky, the Zofran seems to make me shaky, my heartbeat seems to be running a little faster than normal but it seems regular. I'm drinking so many fluids and yet my urine is still warm (warmer than normal) and yellow.

When I was in for the infusion, I "handled" everything well, apparently; when I went for my Neulasta shot, the nurse said that if I were to have an allergic reaction, I would have had it.

The nurses seem to indicate that allergic reactions are seen right away, but can some of these allergy symptoms appear between infusions?

I think it's probably "normal" to feel all these drugs in me. I'm being vigilant but I'm also feeling a bit paranoid!

C.

BonnieR

09-01-2007, 10:50 AM

Christina, it seems you have enough questions and concerns that maybe you should be asking your oncologist or staff about these things. We are the voice of experience here but are no substitute for professional opinions. And you might feel reassured by asking your doctor's office before we get deep into the long holiday weekend..

rentrac

09-01-2007, 11:12 AM

As to the possibility of allergic reactions, your chemo nurse was exactly right. I'm sorry I didn't write more clearly (dain bramage); if you have a reaction, chances are 99.9% it will be while you're getting the chemo. That's certainly what happened to me.

I've gone through the genetic testing as well. As I recall, the more cancer (doesn't have to be breast) that runs in blood relatives, the higher your chances that insurance will pay for it. Remember, only about 5% of breast cancer patients are positive for Brca 1 or 2, and recall that the original population from which the study was done that found the genes were of Ashkenazi Jewish heritage. I tested negative for both. I don't know if they are testing for any other genes, yet, but I suspect as the Human Genome Project yields more information, there will be quite a few genes that are going to be identified.

Warmly (thought not too - the temp has finally dropped below a heat index of 110!)
Rentrac

harrie

09-02-2007, 08:29 PM

Hello Christina,
I had the exact same chemo meds as what you are taking. I started end of Jan and ended this past May, 6 rounds, 3 wks apart.
I didn't experience much nausea. Here are some of my side effects:
1. loss of hair on day 11
2. first round didn't hardly feel a thing, then they progressively got more intense as the toxins built up, peaking around round #4;
3. I got hyper-salivation which was something I could not find anything to get rid of and have found no one that experienced it like I did. Was wierd.
4. taste was totally warped for at least the first wk following tx.
5. I would get my tx on a Fri and would start feeling the effects on Sunday
6. side effects lasted about a wk and at the end of the 5 days to one wk, I could almost literally feel the side effects lift. Like a lifting fog;
7. My WBC and RBC were lowered. Took Nupogen for the WBC and something else for the RBC.
8. Nupogen, I had to take almost routinely because after the first tx, we knew my WBC was going to be effected. Only once did I get the bone ache and Advil took care of that nicely.
9. Decadron day prior to, day of and day after tx. This is to help prevent infections and allergic reactions. Also to prevent the "hand-foot syndrome".
10. The bottoms of my hands and feet would get REALLY red when exposed to heat. no sig discomfort though.
11. I did not miss a day of work throughout the TCH
12. I continued my exercise routines, modified.
13. Started doing yoga
14. Managed to keep my weight very much in check. I maybe gained a few lbs and the wt would really fluctuation + or - a couple of lbs.
15. Tired
16. Used Biotene toothpaste for my mouth. did not experience any sores at all.
17. I would get a mild case of muscular fatigue, mostly in my legs.

That is about all I can think of for now.
It has been just over 3 months post my last TCH tx. After the 2nd month I pretty much felt normal with my energy level and stamina.

If I can be of any help, let me know.
Maryanne

TSund

09-03-2007, 08:33 AM

There is a wide difference of opinion on supplements during chemo, however:

Ruth has done GREAT on the WBC issue without Neulasta through 5 TCH treatments and I am convinced it is because of the astragalus root and reishi mushroom extract. She has not suffered any aches and pains associated with Neulasta or treatment. She is taking L-gluatamine also so perhaps that helps also. Ruth has only missed one day or work, and that was the day of the port surgery. The onc had to admit that she did not believe it affected the treatment, possibly enhanced it, as Ruth's pre-surgery tumor shrinkage response has been one of more dramatic the onc has ever seen. She said to "keep on doing whatever you're doing" after first treatment checkup. Her WBC has gone down each time, but was still at 6.5 the day of treatment five.

I hope this helps. She avoids a 3 day window on either side of the chemo. Ruth also takes probiotic, fish oil, multi-vit, and benefiber. Bentonite clay controlled the diahrehha through the first couple treatments, but then she had to add Immodium to the mix. She takes an acid blocker starting 2 days before treatment through about a week afterwards. The fatigue has been as issue, but ginseng extract tea seems to help.

He onc chose to give her RBC booster on treatment 4. Returned to low normal on day of treatment 5. I'm betting she might need it again on treatment 6 as her fatigue has been worse this last time.

Her steroid dose has been different than others here. No steroid before-hand. She gets it in the drip day of chemo along with an anti-nausea drug (aloxi?), and takes 2 mg twice a day on days 2 and 3. Onc cut out day 4 when it was evident Ruth had no nausea issues. The Emend (days 1, 2 and 3) has worked absolutely great.

Hope this helps.

Terri

BonnieR

09-03-2007, 08:58 AM

Terri, how much L-Glutamine is Ruth taking? And how often?? For how many days? I am conductiong my own little survey! Thanks!

Cristina19

09-03-2007, 09:47 AM

Hello everyone. I'm grateful for all of the information and conversation.

There are two (three?) issues that seem to be lurking for me:

1. it's so dang hot over here (109, 106, 104...) that I can't get out to walk; it was over 90 degrees after sundown last night, but we did get out to see music in the park and I felt tons better! The air conditioning is aggravating my sick feeling.

2. I've continued with the Zofran and added Zantac because any time I eat I seem to feel acidic, thus, "sick." I don't seem to be to the point of throwing up, but the "sick" feeling doesn't help.

3. My heartbeat is strong--not fast or irregular, but "strong." I called the nurse and she thinks it's anxiety. She wasn't concerned. I wonder if it's the Zofran which seems to make me feel shaky and light-headded.

Any of this sound familiar?

C.

TSund

09-03-2007, 10:26 AM

Prilosec save us on the acid issue. Nurse said to take it all the way thru chemo, but 7-10 days max has been enough to control symptoms for Ruth, and I believe it better to minimize drugs when not needed. Has worked much better than the "symptom treatment" antiacids.

TSund

09-03-2007, 10:30 AM

Oh...and Ruth had the "shaky" feeling. Oncologist said it was the steroid. Onc cut dose down since no nausea problems. No problems since.

BonnieR

09-03-2007, 11:25 AM

Christina, I was just commenting to my husband how strongly I can feel my heartbeat now.Well, duh, I had a bilateral mastectomy and of course there is no padding on my chest wall anymore. It did not occur to me at first. But I see your mastectomy was on the right side. And I guess you are referring to your pulse???

And Melinda, I wanted to thank you for your earlier post that you did not loose all your hair until the third round of chemo. I still have enough short hair to look like someone with VERY thin hair. I do not seem to be scaring children when out in public so am going without any head covering. Which is a blessing. It is at least 112 degrees here and HUMID. It is nice to be unemcumbered....
But my third round is tomorrow........

rentrac

09-03-2007, 12:43 PM

Dear Bonnie,
I didn't lose all my hair when on THC either. I THOUGHT I was losing it all as I was down to lovely white wisps since all the dark stuff was gone, so I went ahead and shaved it. I admit I chickened out of my great April Fools Day joke that my daughter and I planned: Had I shaved it a day earlier, she was going to draw a face on the back of my head, perch some Groucho Marx style glasses on the back, put falsies int he back of my shirt and either a hoodie or hat on my head so I could walk around the local WalMart that day. But the best part of the hair loss was that the white immediately grew back in with the other stuff delayed by at least a month or two. THe result was an amazingly beautiful pelt of silky silvery hair on top and a dark undercoat. The hidden rocker in me was thrilled, and I got tons of compliments for the 2 or 3 months I had it.
Good luck to all on the last of those TCH treatments.
Warmly,
Rentrac

fauxgypsy

09-03-2007, 01:43 PM

Christina, I am glad you understood what I was saying about the the show. I haven't made up my mind about reconstruction. I am still trying to get the use of my right arm back. I started physical therapy last week. I have an impinged nerve and it feels like I have a steel spring from my sternum to my thumb but it is getting better. I have to say that the chemo wasn't as bad as I expected but the surgery has been worse. Right now I cannot imagine voluntarily going back for more. I may change my mind but only if I undergo some sort of amnesia similar to childbirth. On top of that I found out the other day that my insurance doesn't cover it. I would like to have the option. Hope you get through your chemo okay.

Leslie

fauxgypsy

09-03-2007, 01:47 PM

Emend is a wonder drug. It comes in a blister pack . You take one before chemo, one each of the following days. It really helped me. I had it in conjunction with the Aloxi premed and Zofran as needed. I only needed it on the weeks I had carboplatin.

Leslie

Cristina19

09-03-2007, 02:50 PM

Leslie,

The reconstruction thing is so hard to comment on. I have this nagging feeling that if I knew then what I knew now, I might not have chosen reconstruction. HOWEVER, I never went through the breast-less stage, so I don't know what it would be like to be without one, or both. I didn't have a lot of tissue to donate, so I'm stretched pretty tightly. For women who have more tissue, the recovery may be much better and the return to normalcy may be much sooner. Honestly, I suspect that I'm weaker in the abdomen but I never felt any muscle pain. My tight tissue simply won't let me stretch yet. I have normal range of motion if I twist from side to side but trying to do a yoga cobra stretch is pretty tight. When my stomach gets gassy, it's uncomfortable.

Besides physical therapy, swimming (and I'm a water-phobic non-swimmer) has helped to get the range of motion back in my arm. I had what I described as a "rod" in my armpit that is finally loosening up. It took about two months to feel like I had my arm back and today is exactly 10 weeks post-surgery.

Is it only California law which mandates that insurance companies pay for reconstruction???

BonnieR

09-03-2007, 03:54 PM

Leslie, is the Emend for nausea? Is it OTC or prescription? Thanks.

rentrac

09-03-2007, 04:11 PM

Dear Christine,
Finallly got a chance to read back throught the thread. You're wise to have had the reconstruction when you did and to be sticking to the PT. I wish I had. It took a weight gain from other therapies that followed 2 years after the mastectomy to add weight to the other breast - talk about unbalanced! I went from being B cups on both sides to ultimately a D/-A while on an extended dose of Decadron! My poor lats on the side of my mastectomy lost so much tone I was cramping just lying on the other side. I'm in PT now, in part, so I can safely build up the lats without triggering lymphedema. The pool is absolutely the most wonderful PT in my opinion, and I'm not much of a swimmer myself. The hydrostatic pressure of the water around the arm affected by axillary dissection is one of the best ways to manage lymphedema at its earliest stages, and before it has a chance to start - something I learned from my wonderful lymphedema therapist.

I think it's federal law that mandates insurance pay for reconstruction.

Sounds like you're coming through your introduction to chemo pretty well. Benadryl and decadron can certainly leave you reeling, but if you expect that to happen, it's not quite as disconcerting. Just expect to get a little more fatigued after each treatment.

I envy your studying Latin! A language I've always wanted to take. I tried catching up on medical journals with my first chemo, but found that I developed an increasing loss of focus, aka chemobrain. I switched to learning how to knit. I could put it down whenever I wanted to and not worry about losing ground but at the same time felt like I was doing something constructive. It only took me 2 years to get to the point I could knit scarves good enough to give as gifts!

Good luck, and know I'm another thinking of you.
Warmly,
Rentrac

fauxgypsy

09-03-2007, 05:17 PM

Bonnie,
Emend is a prescription drug and pricey for three pills but it is wonderful for nausea. When I started taking it the weeks I had carboplatin I didn't have nearly as much trouble with taste changes either. I didn't need it for the for the taxol/herceptin weeks.

I am on Mississippi medicaid and even though there is a federal law that calls for insurance companies that pay for mastectomies to pay for reconstruction, it seems to be that the states have to mandate it. 36 states do, but Mississippi is one of the ones who do not (at least that is what I was told when I called last week.) In my reading, I actually read that insurance companies do not have to pay for mastectomies. I am self employed and had tried to get insurance but was turned down for pre-existing conditions. I am glad I was able to get medicaid but I am not through with this issue. I am going to follow up with our state senator for our district. The federal government will match any expenses they incur just like they do for other surgeries. Although as little as medicaid actually pays them, I am not sure I could find a surgeon who would take it.

Christina, Just remember that these drugs do not target cancer cells, they target rapidly dividing cells, so that they can have effects across all of your systems. Especially cells that are replaced often like the one that line your intestines, etc. That is why they affect your hair cells as well. Some of us get bloody crusty noses and on and on. So there are varied side effects. But if you are ever in doubt, call your doctor or nurse practitioner. Make sure you read the handouts that they gave you when you started chemo so you will have an idea of what to expect and what is unusual. I almost didn't mention a side effect to my doctor recently, I thought it was nothing to worry about. I was having chills. What I wasn't worried about prompted him to do a good bit of blood work. If anything is bothering you then it is worth bring up with your doctor. Ther is also a lot of info on this site. I have found that it helps, particularly in the beginning, to take a list of questions and concerns with you because it is so easy to forget what you wanted to ask.

Leslie

BonnieR

09-03-2007, 05:28 PM

Leslie, your reply was interesting because I dont have different days for anything. I get all 3 drugs over a 7 hour span. Nor do I receive any meds the day before or after. It certainly shows the variety in treatment approaches.
So far I have been able to control minor nausea with Compazine. But will file away your information in case I need it down the line. Thanks..

Jean

09-03-2007, 06:38 PM

Hi Christina,
Welcome to our beautiful site and I am sorry that you were dx. with bc.
But the good news is you found this support group. I have been away
on vacation and just returned....read your post.

By now you have received a lot of information on the TCH...it is doable.
Just take it one day at a time. Rest when you need it and don't fight
the fatigue when it hits. I am very active - so for me it was important
to accept the days when I needed to slow it down and even come to a
complete stop...get some great reading material...fun stuff to help pass
those days when you need to just lay around. For me two days after
treatment it would hit me and I needed two days to rebound. But
do exercise and push yourself in this area. It is important to move.
Even if it is just a short small walk, the fresh air and sun is good for
for you.

Do check on any supplements while on chemo....you DO NOT want
to counter effect the chemo in any way. This seems to be a big
issue during chemo. Check with your onc. and if he allows supplements
during treatment. Once I was completed with chemo and just on herceptin I then began a full routine of supplements.

The pre-meds are the hardest....they really wire you up. You could ask
your onc. for a mild sleeping pill to help you rest during the day before
day of and day after. Eat heathly and make your meals count.
If you have any questions please do not hesitiate to contact me.
One day at a time!

Will keep you in my prayers and sending you lots of hugs,
Jean

harrie

09-03-2007, 07:52 PM

Hello Cristina,
(This is the 3rd time I am trying to post a reply to your thread. Each time after I write the entire thing, it DOES NOT POST! I wonder if anyone else has this problem...fustrating...)

Anyways, Cristina...again...yes, I had the exact same regime as you....taxotere, carbo, herceptin....6 rounds, 3 wks apart. I did mine from end of Jan to May of this yr. I have been done for a bit over 3 months and FEEL ABSOLUTELY GREAT!! Actually, I felt really good 2 months post my last round.

Here are some of my side effects:
1. Low WBC and low RBC. Took Nupogen for the WBC and only had bone ache once from it. Advil took that pain away.
2. Nausea: hardly if any, not during, not after. Just had the Aloxi as a premed at the time of tx and that was it.
3. Excessive salivation: that was lousy, and could not find anything to alleviate this problem, so just tolerated it. lasted a good 5 - 6 days after each tx.
4. Hair loss 11 days after my first tx. Ended up buzzing my hair off really short.
5. tired
6. leg muscles felt weaker
7. fingernails: after my last treatment they took a beating: some discoloration and some lifting. used tea tree oil and that helped alot;
8. I worked throughout my chemo txs. No problem.
9. Exercise: I exercised thoughout, but did take a break maybe a wk after each treatment and when I did exercise, it was modified to what I would normally do. I just listened to my body.
10. Took up yoga in Feb and I loved that
11. Decadron gave me a hard time sleeping so took something like Sominex, maybe 1/2 or one tab. (over-the-counter sleep aid)
12. Hard stools: maybe 4 days or so after each chemo. Used an over the counter stool softener and that helped a lot
13. Taste: for about a wk after tx, food tasted bad.

That is about all I can think of for now. Email me if you have ANY questions. When I look back, I am glad I did all 6 rounds. With the encouragement from our sister HER2, I was convinced to just do it! (thank you Jean....)

After round #4, the side effects did not seem to get worse. #1 round I hardly felt anything! #2 I definitely felt it, #3 was NOT fun, as the toxic levels accummulated....

I had my treatments on a Fri, and by Sun I would start to feel it. It would gen last about 5 days or so and then I could feel the side effects lift...like how a fog lifts...

Maryanne

Cristina19

09-03-2007, 08:24 PM

Ladies,

Thank you! I am relying so much on the support from this group and it is helping.

I took an extra day of the anti-nausea and it seems to have settled me enough to eat more today. The Zantac may be a large factor in it as well as my issue seems to be more about acid than nausea.

This evening, it was "cool" enough to go into the garden and water and water and water. The plants needed the cleansing and so did I.

I do feel better today and hope tomorrow is even better.

Okay. Two "trivial" questions:

1) Why are wigs so top-heavy? My hair is naturally stick-straight and fine. The wigs are like afghan rugs on top with huge bangs!

2) I think I know the answer to this, but did any of you break out in little tiny pimples after an infusion? I've been drinking gallons of water but right after surgery and the infusion my skin has broken out into little tiny bumps. I think the saline or drugs or both are making their way to the surface. No matter how much I wash and scrub, they appear!

Uggg.

harrie

09-03-2007, 10:28 PM

Yes, I broke out in some acne. One or two here and there and I normally do not get pimples.

My wig came in one length, took it to my hairdresser and she styled it exaclty how mine own was. People cannot tell the difference. In fact, if you look at my pic, that is my wig.

Maryanne

Cristina19

09-21-2007, 12:30 PM

Hello Ladies,

A short message here as I am in Day 2 after tx 2.

Week 1 after treatment was "typical"; week 2, I was plagued by nasty acid reflux (now on Nexium); and week 3, had splitting headaches almost all week (partly due to that glorious period during the month...).

Went to tx 2 expecting it to be uneventful as was the first one and had a reaction to the Taxotere. Thank God my mom was in the room to run and get the nurse and thank God I pinched off the IV line to stop the meds. It seemed like an allergic reaction, the nurse just called it a "side effect": felt it first in the stomach, then chest, then felt like I was going to faint. Face was lobster red and I got a few red spots on my tummy (like hives) that went away within an hour. By vitals were high but still within normal range. Ugg.

More Benadryl and cortisone and they started me up again. Ugg, again.

After effects seem lessened this time round, but it's still early before the proverbial "3rd day after chemo." My oncologist lowered my dose of Neulasta by half to ease the flu-like aches and is tapering me off of the Decadron more gradually to ease the shaky feeling.

Hair started shedding in greater abundance in Week 3 after tx 1 so my lady-barber cut it into a pixie-cut that is thin on top but looks fine for now (maybe only a few days...) and when I put on my glasses at night, I look a little like Harry Potter!

xoxo,
Cristina

Jean

09-23-2007, 01:03 AM

Cristina,
Too bad that you had a reaction to the Taxotere. Hopefuly your next
trt will go without that event. But just think you will be halfway through
your trt's. I found that yogurt was very helpful with the tummy....
Try small little meals to help control the reflux...also brown rice was
another great food for the tummy with some steamed veggies.

Thinking of you and sending you many hugs,
Jean

tousled1

09-23-2007, 08:29 AM

Christina,

You're half way through treatment now! You will find that with each treatment you may have different side effects. My adivse is to drink plenty of fluids. As for an allergic reaction -- if you have one it will happen immediately upon infusion. When I was on Taxatore I had low blood counts (red and white) for which I received Procrit and Neulasta shots, hair loss, change in taste, and neuropathy. I also found that the Decadron wired me up -- couldn't sleep. Hang in there, you're almost finished.

harrie

09-23-2007, 10:11 AM

Cristina,
Whoa...well you survived that one bout of side effects from the Taxo. Whew...did it....hang in there. Wish you good management with the upcoming txs. You have a lot of us right there supporting you offering you helpful hints and encouragement anytime! I was told, and found to be true, it does not get significantly more intense around #3/#4. Remember, most side effects are not fun, BUT are manageable, tolerable and TEMPORARY.....and when I look back, very much worth the benefits.
Aloha,
Maryanne

Andrea Barnett Budin

09-23-2007, 10:51 AM

Not so silly questions. I found, believe it or not, that Raquel Welch's line of wigs are AIRIER. A wide range of colors and styles and fairly reasonable in price. My wig lady is an expert on cutting wig hair -- for free. Touch ups and *comb outs* any time, also free.

My first wig in '95 was REAL HAIR which I paid a fortune for and found that it had REAL BAD HAIR DAYS. The *synthetic* ones have memory curl and are way easier to care for. I was always getting compliments on my hair w/the wig. I love your hair. Great cut. You're hair looks nice. But the moment I got home, I hung it on a hairspray bottle or whatever. Then, when wearing it, I'd shake it out vigorously and then plop it on and rearrange it as if it were my own hair, making it look more *natural*.

My first wig I took to my very excellent hair dresser or worked and worked on it, on me, in a private back room and then, displeased asked if he could take it home to work on it. Then he came to my house for a final *fitting*. He really screwed it up. I didn't tell him though, he was so sweet and loving and refused to accept a penny from me.

I do believe if you look good you feel good. Even when I'm feeling crummy, like now (recovering from an almost 2 wk cold/flu/whatever) -- I put a bit of makeup on and gave my hair a quick blowout. Still in my nightgown (oooh, you can't see but that's what I'm wearing for the day). No earrings. But I do look noticeably better. And maybe I feel a bit better. Though I declined a movie date w/Paul and friends. Not up to it just yet.

During chemo, when I was greyish yellow, bald w/no eyebrows (still have none -- most annoying) and no eyelashes -- I looked like a blob. Some foundation, blush, shadow and lipstick + wig, earrings and something nice yet comfy -- pp always told me you look great. You can't be sick. Though I knew it was smoke and mirrors, powder and paint as they say, it seemed to encourage me to do more, mingle more. Pp felt comfortable in my presence, virtually free of dealing w/a ca patient facing death (which honestly can be a bit depressing). Their good vibes met mine and we all felt good!

PS -- Would someone please define TUMMY PROBLEMS?????????? Does that mean: Cramps, spasms, pain, rumbling, sensitivity, diarrhea -- WHAT?

ANDI :)

Cristina19

09-23-2007, 12:04 PM

Wonderful Ladies,

I don't think I've ever felt more indebted and more grateful as I do now that I have been the recipient of so much support from family, loved-ones, and friends... all of you who come out to give me words of encouragement.

Sometimes my spirit feels so wounded. How, why does something like this happen? Then, I see those little babes at the hospital, bald with baseball caps, and I know that none of us "deserves" this; none of us did anything to cause this to happen. Nonetheless, when feeling crummy, it's easy for me to remember how healthy and strong I felt 4 months ago and lament that I'm hobbling along more slowly than my 14 year old dog.

My man-friend shared a quote with me today from Martin Luther King. It may be inspirational to some of you:

From M.L. King, Jr., “Suffering and Faith” (1960)

“My personal trials have also taught me the value of unmerited suffering. As my sufferings mounted I soon realized that there were two ways that I could respond to my situation: either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course. Recognizing the necessity for suffering I have tried to make of it a virtue. If only to save myself from bitterness, I have attempted to see my personal ordeals as an opportunity to transform myself and heal the people involved in the tragic situation [that] now obtains. I have lived these last few years with the conviction that unearned suffering is redemptive.”

*******

This round of after-effects seems to be going a bit better than the first. My oncologist stepped me down gradually with the Decadron so I didn't get shaky or have such a strong pulse. I still wonder if the Zofran doesn't make me feel sick in-and-of-itself. Anyone have thick-headed, woozie feeling from the Zofran?

By the way, my onc also halved my dose of Neulasta which may have lessened the flu-like feeling but clearly is working because my joints and legs are achy.

Andi: As for "tummy problems": I generally feel a little sicky but not totally nauseated. I generally feel HUNGRY but don't necessarily feel good after I eat.

Maryanne: Your bio mentions Diep reconstruction. You look very slender and I wonder if your reconstruction left you pulled tight! I didn't have a lot to donate for reconstruction, and I'm still tight in the abdomen. I'm not in bad shape, but if I get any pressure in the abdomen, it's exacerbated by the tightness. How did your recovery go with that?

Going to rest,
C.
=)

Andrea Barnett Budin

09-23-2007, 12:40 PM

Christina,

That quote is now embedded in my computer. I love it. Use your suffering as a creative force. Transform yourself. To save myself from bitterness I have chosen to view my suffering as an opportunity -- for myself and in turn, for those around me. To set an example for my children and those who come with me and after me. Just beautiful.

RE ZOFRAN. When on shock and awe chemo, they gave me Zofran as a pre med in the infusion before the infusion, if you know what I mean. Then, they gave me a prescription for Zofran and told me to take it first thing in the morning. But what if I don't feel nauseous?, I asked. The nurse thought for an instant and said, TAKE IT ANYWAY. (She knew something...I surmised.) I thought, why didn't they give me all these prescriptions at my last visit to the onc? But anyway, Paul and I filled the scrip on the way home, waiting for it to be filled. Wanting to have it ready.

We got home around 5ish. I felt okay. We went out to dinner. Mid dinner I started to feel weird. Queasy. I couldn't eat. Then it started to escalate to the point that I asked Paul to get the check so we could go home. I washed up and got into bed. I felt lousy. Around midnight I heard my voice moaning. I was thrashing around. I felt like throwing myself overboard and just giving in to drowning.

I woke Paul, who could sleep through anything. Take a Zofran, he said. But they said to take it first thing in the morning. I was a newbie. I wanted to follow doc's order to the letter. He said, What time is it? 12:05. IT'S TOMORROW. TAKE IT NOW. I did and felt better within a half hour. Yes, that loggy, foggy feeling, but tolerable vs intolerable.

For mild queasiness I found that Phenergan worked best for me, having less of a knock out punch than Zofran (when the big guns weren't really needed). The *usual* med they give you for this did not work at all on me. Kytril?, I think. Like eating a banana for me. No effect. I learned quickly what worked for me and denied using the other immediately upon hearing the name. This would work for your TUMMY thing, I think, taking the edge off. Though feeling hungry and being unable to eat became the norm for me when on major chemo. A metallic taste, an inability to taste foods I ate and used to love. A craving for new things, like cucumbers which used to be tasteless and now I find wonderful. Lost 33 lbs.

FOUND IT. And then some... ANYONE ELSE HAVE A WEIGHT GAIN PROBLEM ON HERCEPTIN? It's most annoying as I never ever eat dessert of any kind (not a single piece of candy, a bite of cake or cookie), don't eat anything fried, etc. I should be having more FUN at my present weight. Well, I guess I am having fun -- being alive and all!

Andi :)

TSund

09-23-2007, 02:27 PM

Christina,

Astragalus root and and Reishi mushroom can help bolster the WBC and might prevent the Neulasta necessity. Ruth took Gaia Herbs (Astragalus Supreme and Maitake Defense - liquid caps of both) and they seemed to really help.

Terri

Andrea Barnett Budin

09-23-2007, 02:45 PM

With all the supplements I take, I can't imagine how much *worse* my low RED BLOOD CELL COUNT would be without their help.

Still, open to suggestions. Slugging along like never before. Oh, the good old days when Aranesp kept me going strong...

The monoclonal antibody people need to revolt. At least, those in need of some pep. My get-up-and-go, got up and went. Bummer...

ANDI

Believe51

09-24-2007, 06:17 PM

Just pulling this back up for our new friend "SuePer"......Believe51

SuePer

09-24-2007, 08:41 PM

Boy this sounds exactly like my nightmare, same reconstruction, and pretty much same stats. I will be getting my port the week of Oct 8th and chemo starts the following week. I also will be on the same drugs as you, I feel better taking these than the AC etc. Good luck to both of us, it will be a long ride I think.

Sue

Cristina19

09-25-2007, 11:04 AM

Sue,

Write to me or visit this thread as much as you want, need! Everyone here is so supportive; I don't know how I'd get through this without this team to reinforce me.

The latest complaint: my face breaks out like crazy after both treatments. Now that my hair is falling (and my barber has cut my hair into a pixie) and my complexion has gone to the dogs, I look like a pimply Harry Potter. Uggg. The doctor suggests that it's the steroid (Decadron). It will go away by next week, if my last experience says anything, but ugggggg.

Can't seem to resolve the sensitive tummy issue. I just got a round of magazines in the mail and all the recipes look SO GOOD! Eating is one of the great joys in life! I want to have a good meal and feel good afterwards!

I'm going to be getting a port, too. I did the first two rounds with an IV until they scared me that the drugs can really damage the veins. Anyway, getting poked all the time for everything is a drag and the thread on ports was encouraging.

xoxo,
Cristina

Andrea Barnett Budin

09-25-2007, 11:42 AM

Hi y'all! Must say, getting a PORT is the best thing I ever did. I love it. And it loves me. I am totally protective of it. Will not allow just any one to access it. Check that I am being given saline before and after w/heploc. This is my 2nd one and I want it to live another 50 yrs at least...

I remember my tummy issues. Major IBS came w/Taxotere and did not go away when done. Daily pain, spasms, somersaults going on in there, and my stomach would get hard as a rock. Chemo ate away at my stomach lining I was told. Took every med they have, w/little relief. Took 20 Imodium a day, most days, just to try and maintain a *normal* (HAH HAH!) life style...

Ate -- like a hamster. Ummm... Had flavored oatmeal w/raisins I added (when I felt up to *cooking*). Ate a handful of nuts on the shuffle from room to room. Ate two bites of a pasta, a pretzel. Hungry, but then, couldn't eat. Would push my plate to the middle of the table, I often couldn't tolerate the SMELL! I lost 33 lbs and never looked better, but for the bald head and no eyebrows or lashes. Makeup, a wig, some earring to be sure and I was a knockout, if you didn't mind cherubic cheeks/moon-face from Dexymethazone (steroid, day of and day after was my onc's rule back in the day). I swear I recall my MJ (fav onc) telling me that now not every one loses their hair from Taxotere (?different dosing). I just remember saying, OH, GREAT. Too bad for me. Good for others. Yet, I'm reading -- bald. Heard something about a little known ICEPACK (to wrap your head in when getting?? chemo). I pictured a showercap. Don't know. Most oncs don't know. But I have a friend -- a 30 yr SURVIVOR of bc -- who did not lose her hair -- all those many yrs ago -- because of the icepack thing. I'm just saying...

So eventually Effexor (which is an anti-depressant and couldn't hurt) is also supposed to help HOT FLASHES. I am in my 23rd yr of this *phase* that is non-stop hell. So I take the Effexor. And I'm happy. I'm ME. I still have the hot flashes. BUT -- no more tummy issues! It cured the IBS. I no longer live with daily pain, diarrhea, spasms, grumbling, rumbling, topsy turvy tummy. Occasionally, I take 1 Imodium and I'm good to go. Hope this helps at least 1 person!

With love,
Andi