Taxotere, Carboplatin, Herceptin - Page 3

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.

janet11 · 09-25-2007, 02:19 PM

My onc also recommended the salt water gargle which I hated. And that didn't do anything against the "sewer mouth". Biotene mouthwash was the only thing that helped. I tried the Biotene toothpaste, but it sure felt "skimpy" -- it didn't foam up at all. Still, it did work.

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!

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 · 09-01-2007, 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

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

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???

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

BonnieR · 09-03-2007, 03:54 PM

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

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