At the end of my positivity rope...
 

I have not contributed here much at aall as I am not as informed as many of you. I find myself at the end of positivity now. I had the surgery in Oct/07 Diep flap went well. I started FEC Dec 1/07 went according to their expectations??? Nausea and vomitting and fatigue but I endured. I Had my first of three Tx's of Taxotere and Herceptin. Herceptin will continue for 1 yr. I apparently now will have to have 25 RAD Tx's as well. Here is the thing, I am so sick with this taxotere. I can not keep anything down, I ve tried plain things, small amounts, cold hot you name it nothing stays. I have diarrehea which has irritated my southern region to the point that I now am applying baby "butt" cream after every encounter in the WC. I have this red scaly rash on my inner thighs, neck and left side. I am tired but can not sleep. Basically I am at my end. I know that I have to go thru this 2 more times and I don't think that I can. I have no strength left, emotionally or physically for that matter. Rationally speaking this is a small price to pay for the rest of your life but when is it enough? How do they know that it is the 3 tx of this poison that does it? Where did this number come from? I called the nurse for some help and I heard in her voice that she doesn't know, as she flips thru pages to give me "answers". How do they know that the FEC didn't do the trick? If the Taxotere is the one then why do it lastly? I have faith and keep getting up each day but how much canyou endure?
I am sorry to rant.............You all have your own journey's.
Thanks for listening,
<Michelle>

Taxanes - of which Taxotere is part of the family, are key to irradicating Her2+ bc. Ask for Zofran for nausea or Emend shots. Also, ask if you can use Imodium (its over the counter) for the diarrhea. Tell your onc and onc nurse all your physical problems and DEMAND rx assistance with this. Without meds, I would not have been able to do it.

You shouldn't have to stop because of this. Also, Ambien CR (sleeping aid) can help alot with insominia.

Go for it and call now. They are being unfair to you if they don't consider your plea for help now and finishing treatment is key for the chemo to do its job.

Hugs,

I agree with Becky. Jill's nausea well handled with Zofran. Compazine did not work as well.

Also very important... do not wait for nausea before starting these meds, take them before you get the symptoms and they will work much better.

I almost forgot... Some of these meds can be given I.V. as premeds to chemo. Talk to your oncologist if you are not receiving them.

First, you have every right to come to us with concerns. We, more than anyone else, understand.

It was almost a year to the day I ended up in the hospital for 5 days from intestinal issues from Taxol. I went through every test imaginable and they all came back fine (so it was Taxol). I found the best gastro Dr. who really helped me. He put me on a prescription medication that finally got things under control. Also Emend really kept my nausea at bay. There is help for you and you should not have to endure this. Sleep aids scared me but Adivan helped me to relax and fall asleep. Lack of sleep does not help either


You can do this! Your course of treatment is necessary. Remember Hercepitin alone is a breeze for most folks. You are almost there! I am a different person today a year later and you will be too. If you want to chat more send me a private message.

Donna

Sorry you have such a bad time
 

Hi -
It sounds like you may have an intestinal bug on top of the Taxotere side effects. There is a really bad one going around - I had it recently!
There are times when we are so dragged out by the treatment that it is a wonder we make it through.
The sleep problem is from the decadron you take for 3 days - it makes us hyper.

About the number of treatments - our standard was FOUR at every three weeks. Don't know about 3. I had 4, but the last dose had to be cut by 25% because of the severe flu-like symptoms I had, which did NOT include runny bowels.

Get some acidophilus with bifidus or eat yoghurt to replace the good flora that you need.

I also never had nausea, as the Kytril I got as a premed was all I ever needed to control it. The mouth sores made it difficult to eat my normal diet, and I ate a lot of things like broth with rice and fried egg in it, applesauce, potatoes mashed with cooked carrots, bananas. You need to keep your protein up somehow.

Keep the faith Michelle!!

I had the FEC (x3) and then Taxotere (x3) I think this is a pretty standard regime here in Canada - As the others have stated, the Taxotere is really important for eradicating the Her2neu+. I also was much sicker with the Taxotere - had the butt rash too, but my onc. prescribed something for it. Sitz baths with epsom salts also helped.

And yes, staying on the anti-nausea meds consistently really does help. Try eating some popsicles. Also soda crackers, mild veggie soups and gingerale seemed to stay down.

Good luck, you will get through it.

all the best
caya

Hello Michelle,
I can't offer any other advice than what the group has already told you but do want to reiterate that there are medications that can help you through this process and you need to demand they be given to you. Is your medical team aware of how terrible you have been feeling? If they are are they need to be putting their heads together and coming up with ways to help you through this. Please Michelle, settle for nothing less than what you rightly deserve - and that is respect - care and everything your "team" can do to get you through this.

You're almost there. Hang in there sweetheart, you CAN DO IT. We are here to encourage and love you through it as well. Thank you for coming to us now.

Sending hugs and love your way,

Mary Jo

not ok to suffer so much
 

Hi Michelle,
Sounds like you are going through absolute torture. How could you possibly stay positive under that circumstance??? I agree with the rest of the gang, your oncology team should be doing everything they can to mitigate your symptoms. You will be better able to marshall the resources for recovery if you have some strength!

I did not have FEC, or Taxotere for that matter. But I did have Taxol, and was treated alongside many ladies getting taxotere. Everyone got multiple anti-nausea meds as a premed infusion, and had various prescriptions of additional ones to use if needed at home. Our oncology team expected people to be able to manage whatever nausea or other symptoms and were very proactive in making sure patients got this addressed. My impression was that nobody on these chemos was dealing with unmanageable problems.

Ask specifically for help in this - I forget my premeds but I think it was Zofran and Aloxi, then I had more Zofran and ativan for at home if I needed. The ativan also helped with sleep. There is also a med called Emend which is fairly new.

Best of luck to you with getting these side effects under control.

Becky already said, the taxanes have been shown to be extremely effective against Her2 pos breast cancer, and is synergistic with Herceptin.

My deepest heartfelt thanks to all of you. I just realized that this is the first time I have not been positive through out this journey. Thanks Mimiflower for the reminder. I can have bad days. It's allowed.
I did call the ONC at 11:30 a.m. EST and received the return call at 3:45 ish. Of curse I missed it as I was in the loo!
the Nurse states my Onc is on holidays and that I am to see her on Friday for the Nurse assessment and I can speak with his partner then. She also said that if I needed anything to call her on Monday. I think that she feels like I am overreacting. Perhaps I am but I also know that I am not a whimp amd the fact that I actually made the call is signifigant. 3 vaginal deliveries au natural....no drugs....1st was 10lbs,6 oz, second was induced early at 9lbs, 11 oz. The third she was "normal"weight. I know what I can handle and I think I know when I've had enough!!!!
Any how, we shall see what tomorrow brings.
Love to all

Michelle,
Becky did give you good advice. Zofram is a must for nausea and as someone pointed out. I used to take it every eight hours starting after treatment and cont. with every eight for, as I recall , at least 2 days after treatment. Ambein is great for insomnia also. And last but not least I had excoriated areas in my inner thighs and entire perinuim when on adriamycin and cytoxin. I used to take sitz baths -- just plunk your bottom in warm water for 20 min. about 3 times a day. Dry well and use desitin. It's messy but it works. It actually didn't completely go away until after 4 treatments of Taxol.
It was all such a pain but I figurured I just had to do it.
At times I felt like tossing that old sitz bath pan out the window, but I would just fill it up or sit on the tub.
Then I'd get out of the tub and stare at my bald head and scream....
But you know I healed, my hair grow back, the nausea went away, my enery came back and I'm a 4 year survivor.
Hang in there, girl, because you can do this. And it's ok to feel like crap sometimes... it's allowed. But the end result wil be a Michelle who will be back to her old self.. And if anyone makes you feel like a wimp ....they can go fly a kite... I'm being kind.
You take care
Carol

Michelle,

I smypathize with you. I had a terrible time with the Taxatore. I had 4 rounds of it and remember crying after the second round that I just couldn't take anymore. My daughter was there to encourage me and to remind me that I was half way done and only had two more to go. I managed to get through it and I'm sure you will too. I found that EMEND worked the best for nauseau for me for the first few days after that I used phenegran (spelling??) As for sleep, ask your doctor for Ambien, Ambien CR, Lunesta, or Rozeram. Any one of those should help you get the sleep you need. Hang in there it does get better.

Michelle,

Please know you are not alone in your thinking. Great advice from my sistas. Although I had AC & T, I too had Emend (3 caplet prescription) and Imodium caplets (over the counter drug) which worked wonders.

My best wishes to you for lessening the side-effects of this chemo!
JO

The thing is this is one week post infusion and I am getting worse. I ate small amount 1/2 c of plain noodles at7:30 ish, 10:00 p.m rools around and my stomach starts to churn and I know I'm going to hurl. So in I go and then what comes up but the noodles and saliva, stomach acid and blood. I now feel as if I have strep throat. I may or maynot but that is the feeling, my upper esophagus is raw. I drank some baking soda and water to try to stop the burning. I live in a small community and there is not a 24 hr drug store. i am popping rolaides to try to combat the acid. I will get some thing like malox or whatever the Pharmacist suggests. This is insane!!!! I would ask for something but he's on holidays and his Nurse said to call her back on Monday if I needed anything. She is not hearing me. I am not being depressed or a DQ here. Now I am pissed off, excuse me, very angry.

If you don't get any relief within the next hour, I suggest you call your oncologist and let them know exactly what is going on---(they should have an answering service)---or---go to the emergency room.


Be sure to Drink plenty of clear fluids! Gargle with some warm salt water!

Hope you feel better!

Jo

I had lots of problems with my throat when I was on chemo and I found keeping liquids in my mouth while being infused, and eating before and during chemo helped to prevent the severe symptoms.

WHat preventatives are they giving you?

Ruth had something in the drip, and EMEND as a tablet. The EMEND is a wonder drug in our book, she was never nausous. We had back-up anti-nausea drugs, never needed.

Did your doc put you on Prilosec? Our onc. put her on it day ONE and stayed on it through chemo. An acid fighter of some sort is imperative. This is likely what is causing the throat problems, and some of the stomach problems as well. That is available over-the-counter or you can buy a generic form that worked well (can send our leftovers to someone who needs it if you PM me) Ruth also took L-Glutamine and probiotics which can help heal and protect stomach lining.

Immodium for bad bowels, when it was bad times 2 or 3, then balanced out with a natual anti-constipation tea on other days.

Do NOT continue to suffer, please!

Caring,

Terri

Gad. Call your onc nurse (or insist on a call from your onc). You should be getting additional drugs to prevent the nausea.

I found I had acid problems as soon as I started TCH. I used an over the counter Prevacid daily throughout chemo which stopped that.

FYI: I used "baby butt cream" too. I couldn't believe how raw I would get -- it was like my "output" was acidic. But the cream worked.

Also, Biotene mouthwash (from my local grocery store) was a lifesaver. No alcohol, and when my mouth tasted yucky, I would rinse every 15 minutes.

With TCH, foods tended to not taste good. Do some experimenting to find something that feels good. I found cold celery was good. Not much taste, but the crunchy felt good. And cold food tended to feel better in my mouth than hot food.

FYI: I always felt MUCH better the last week of each 3-week chemo cycle. I hope you do too. But definitely call your onc and get some relief now!!!!!!!

I was on taxotere also. I could only tolerate three treatments. I was put on Protonix for the terrible acid. Until the protonix kicked in, I had to sit in my recliner and couldn't lay down, the pain was so bad, I swore I was having a heart attack. My onc said "enough" after the third treatment. I'm hoping that it was enough. I finished my year of herceptin this past December. I just went thru a series of scans and MRI's and so far everything looks good.
My good thoughts and prayers are with you, hang in there.
Hugs

Keep trying!
 

Hi -
If you understand WHY your esophogas, stomach lining is so sensitive now, it may help you to know what to do.

The chemo kills fast dividing cells. Such cells are not only cancer cells. They are found in the mouth, throat, stomach. (I recall that your mouth relines itself once a day.) The chemo does not distinguish WHICH fast-dividing cells it goes after, hence the stomach acid and mouth problems. You should be taking a GOOD stomach acid blocker from BEFORE treatment actually starts.

Stay away from acidic drinks and soda pops, coffee and spicy foods. Try chamomile tea and maybe comfrey. I don't think Rolaids will be effective in this case.

No fried or greasy foods. Soups and soda crackers, yes. Most of us had to make some major dietary changes to handle this side effect.

SOME HELP FOR EVERYTHING THAT AILS YOU... (hopefully!)
 

WELL, WELL, WELL, MICHELLE! I hear you!

In '95 I had Adriamycin X 4 + CMF X 8. In '98, my bc metastasized throughout my liver. Stage 4, HER2+ 80% (that's how they rated it back in the day), ER-/PR-. I endured 9 mnths of Taxotere and it was hell, I won't lie. But I survived. And so will you. After the first 4 mnths I thought that Freight Train drug would do me in, but I rallied. And so will you!

Taxotere is not a poison! It is a LIFELINE, that pulled me through rough waters as my cancer cells were raging. It got every last cell. As for you rest of me -- it ravaged my stomach lining and caused me to begin adding Irritable Bowel Syndrome to my list of enemies. I took Imodium (2 at a time) every time I had an episode, and that was 10X a day. When I turned myself in on this, my onc asked, Then what happens? Then the diarrhea finally stops. And what happens the next day? I am *normal*. I got his blessing. 20 Imodium in a day was good. Go for it.

KY JELLY is sent from heaven. My tushee stopped bleeding and said thank you every time!

Experience has taught me that Prilosec every day is extremely helpful to the throat thing and the feeling mid chest that feels like you're having a heart attack. In fact, my doc said -- take 2 at a time, if 1 doesn't work! ANYTHING THAT HAS AN M IN IT (MYLANTA, MALOX AND SUCH) MEANS THEY HAVE MAGNESIUM AND THIS MEANS -- POTENTIAL DIARRHEA! So stay away from these!

Also, for me, yoghurt and dairy products are a NO, NO for belly issues (NOT belly dancing however) and bathroom drama. Also anything greasy (oily or fried), sugar, nuts -- all bad and irritating causing issues.

NAUSEA -- do not wait till you're nauseous. Like a migraine gone awry, you can't catch it. ZOFRAN is the big guns and does the trick. I had to take it 4 hrs after tx, 9AM the next day and AS NEEDED. I learned to differentiate between NAUSEA and *just God awful* QUEASINESS. For the latter, PHENERGAN worked wonders. Zofran made me really tired, zonking me out, so sometimes the Phenergan was the drug of choice. At night -- go for it! (I learned that -- for me -- neither KYTRIL nor COMPAZENE work for me, even if given along w/my infusion.)

Probiotics (friendly bacteria) known as ASIDOPHILUS 2 X a day helps the diarrhea issue. Fennel Seed (480 mg) 3 X a day also helps settle the stomach and calm that sound of rusting pipes and gurgling coming from your navel. ANTI DEPRESSANTS HELP IBS! (It took me 8 yrs to figure that out.) Zoloft (50 mg) calms my nerves (including those in my belly) and lifts my spirits -- chemically balancing me so that I can be ME.

Taxotere made every part of me severely dry. I needed to use REFRESH + (just saline) in my eyes every single hour for wks till I got that under control. I needed the KY vaginally and rectally. I needed Curel EVERYWHERE ELSE, and VASELINE in my nostrils and on the soles of my feet (which demands socks so you don't traipse that everywhere you go, including sheets) 2 X a day. Biotene as others say for the throat. Gargle.

The Decadron/steroid/Dexymethazone makes you hopped up. So you cannot sleep. Plus you cannot sleep cause you're crazed by the emotional trauma of it all. So ATIVAN (anti-anxiety) and/or AMBIEN (sleeping aid) are NEEDED. Your body heals best during a good night's sleep. YOU MUST LET YOUR BODY HEAL FROM THE SEIGE IT IS *NECESSARILY* UNDER to control the bc/HER2 and the chemo side effects. You OWE it to yourself to let yourself HEAL, to help yourself HEAL. Use your mind and every fiber of your being to HEAL. Focus all your energy on HEALING. Command your body. And -- inform the Universe of your clear Intentions and your passionate and firm Expectations!!

Write -- I CAN DO THIS! on colored 3 x 5 cards in bold block letters and scatter those reminders throughout your house! KNOW that you are doing all you possibly can to eradicate the canser http://cdn-cf.aol.com/se/clip_art/gs...dday/greenface. SMILE http://cdn-cf.aol.com/se/clip_art/gstres/thghts/smileas often as you can. Smile throughout your body, not just with your lips, but with your heart and Soul and liver!!!

Keep drinking filtered or bottled water throughout the day. I drink around 11 GLASSES OF WATER EVERY SINGLE DAY. Good for your skin. Good for flushing the toxins out of your body. Good for your kidneys. ALSO -- though I love ice water -- can't drink it. TEPID keeps your belly calm and happy. I cater to my belly.

You must eat as much protein as you can, Michelle, as well. I found I could eat oatmeal, a handful of nuts ONLY, cucumbers (which I previously hated), lots of salmon, plain chicken (boiled if possible -- actually quite good, along w/the broth you boil it in, maybe w/soup greens, maybe w/noodles). Small amnts. As often as possible. Some docs say eat nothing raw, so I only ate cooked veggies and could only tolerate bananas, apples and pears. Other fruits gave me IBS problems, even if cooked. So, I made a list of *trigger* foods. Not foods I am allergic to, but that cause me to live in the bathroom.

KEEP MULTIPLE PILLS AT THE READY AT ALL TIMES. I went nowhere without them!

Roxicet for the deep muscle pain I felt throughout my legs and arms at all times, helped w/the sleeping problem AND -- the CODEINE therein causes CONSTIPATION, so my onc said -- GO FOR IT, if you need to, with that in mind. I just love my onc. He helped me at ever turn. He was highly aggressive for my highly aggressive cancer. He saved my life. (Read my signature for details re Herceptin, et al, if you like.) And PM me if you want as well. Any time.

I apologize for the long post, but I had lots to tell you! And you sound like you need help, Michelle, so -- we're all here for you. AND YOUR ONC SHOULD BE THERE FOR YOU TOO -- 24/7, IN PERSON, OR BY PROXY IF ON HOLIDAY!!! YOU SHOULD HAVE ACCESS TO ONCOLOGICAL HELP WHENEVER YOU NEED IT. YOU SHOULD BE TAKEN SERIOUSLY. YOU ARE NOT WHINING. YOU ARE NOT BEING PEST. YOU ARE A CANCER PATIENT WHO NEEDS HELP! EVERY NURSE, SECRETARY AND DOC SHOULD BE RESPONSIVE TO A PERSON ASKING FOR HELP, ESPECIALLY WHILE UNDERGOING CANCER TX!! PERIOD. This is your right. I am sure you are reasonable and ladylike, but when you are in trouble, you should be able to get a return phone call certainly the same day, and hopefully within hrs. You should not be told on a Friday to call again on a Monday. I'm just saying...

With a big hug and bunches of positive energy for my Sister,
Andi http://cdn-cf.aol.com/se/smi/2b0000025e/06

Michelle:

I've been thinking of you - and because you're from Canada - I'm wondering if you are getting the supporting medications you should be receiving.

A year ago at exactly this time, I was where you are now. Absolutely miserable, on a drug one nurse told me would be a "piece of cake" compared to my first three rounds on FEC. They had just changed my drug protocol to six rounds of FEC & Taxotere about two weeks before I was to start treatment. I think it was in response to some studies that came out of San Antonio but I was happy to hear it would be six rounds instead of eight. I thought "I can do this". Ha!

I don't know if it their surprised reaction to my symptoms was because they didn't have enough anecdotal reports on Taxotere or what. Even when you read info on side effects, there's not too much about the severe reactions many of us had. I too had the godawful rash and a pain in my skull that was unbelievable. My blood count had dropped through the floor and I was also getting injections of Epo.

And just like you - I posted a note here describing those hellish symptoms and asking for advice.

You didn't say whether or not you were given medication prior to these rounds. If you weren't, you should have been. The standard here is several doses of dexamethasone and ondansetron two days prior to treatment and one day following. I was also given a prescription for proclorperazine to treat nausea.

Because I was on steroids, I had to deal with constipation and by the time I moved to the second dose of taxotere I decided to be proactive. I didn't wait to take Tylenol 3 for the pain, I took it before. I didn't bother with stool softeners, I took a laxative after the second day. (Although I realize your situtation is the opposite).

The final two treatments were easier but did cause me to write this poem...

"It's on day four
When chemo takes its toll
And Alice falls down
The rabbit hole."

Oh - the nurse who told me it would be a piece of cake? I saw her recently and she admitted she has a friend on the drug now who is going through hell. She was not my main chemo nurse. Luckily I had a very good supportive one who, by the way didn't hesitate to consult another oncologist if mine was away.

Hang in there and as everyone says, insist on medications to help you manage these symptoms. After that, it really is one day at a time

Last spring, I saw a woman receiving one of her last Herceptin treatments. She looked wonderful, nicely made up and well dressed with a smart short haircut. The thought of bald, pale, sick me getting to where she was seemed impossible at the time.

But I'm her now, and you will be too.

As for the premeds, I was given a Rx for dexamethasone for 3 days and then have Kytril and Metroclopamide on hand. i was never given anything for the acid reflux or acid build up. I am going to demand this should I continue. i still am going to take a few weeks off. Dwayne is away for 10 days and I can't go thru this again with him away.

acid blocker
 

Michele,

Get on the acid blocker NOW (or at least immediately upon restarting chemo! You can get Prilosec over the counter at the pharmacy. Take it daily.

TRS

PS We ordered the generic at http://www.purplediscount.com/ Worked great.

do the steroids and WBC drugs cause some of s.e.
 

Wondering again...is it possible that the rash and headache and some pains that many get are from the steroids and WBC drugs and not the taxotere?


Ruth had a rash on her head that went away when we asked for the steroid dose to be lowered. (we could do this because her nausea was completely controlled by the emend plus whatever initially put in drip)

Michelle:

I feel I have to add this for what it's worth since we're both from Canada - and since treatment for us as well as the drugs prescribed - is relatively consistent across the country.

Ondansetron is an anti-nausea medication and in Ontario, it is given along with dexamethasone for three days - two days prior to a chemo dose and one day following.

I don't understand (in fact I'm shocked) that anti-nausea medication wasn't prescribed for you along with dexamethasone and it's worth asking why. I know it's the standard at Princess Margaret hospital in Toronto which is the leading cancer treatment centre in the country. All the regional centres in Ontario follow PM's protocols.

Lack of that medication certainly explains some of the nausea you've been experiencing. I know there are anti-nausea drugs you can take after the fact - but taking this one in advance and prior to treatment could make a huge difference.

I know it's tough to be proactive when you're feeling so sick and crappy and it's frustrating for those of us on the sidelines who'd like nothing more than to pound on doors and insist that your medical team listen, pay attention and do something to help you. Hang in there.