HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   Taxotere, Carboplatin, Herceptin (https://her2support.org/vbulletin/showthread.php?t=29753)

Cristina19 08-27-2007 10:00 PM

Taxotere, Carboplatin, Herceptin
 
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

Tch
 
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=...rticle&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

Here's a great summary
 
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.uc...er_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
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/fundraisin...A'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!


All times are GMT -7. The time now is 12:47 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021