Taxotere, Carboplatin and Herceptin
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Thanks Zumbagirl. Amelie, I can't imagine doing Zumba in front of other--but I have 2 left feet. And I find myself giggling when I am all by myself!
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Afternoon GFS
I hope no one was affected by Irene. 7 days out seems like new SEs cropping up. Mouth rash and D. Having a Popsicle.
Seems like we have quite the zumba crowd.
Kids r back in school and I am getting caught up on mounds of paperwork...and bills. I guess it is that time of the month.
Hugs to all.
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musicalmom - I had very sensitive mouth with the first chemo only. I could only use a post-surgical tooth brush that I got online. It didn't happen again, or at least not to the same degree. The onc PA said that the first time they do the neulasta shot it takes a little longer to kick in because it is the first time the bone marrow expands. During that window of lower blood cell counts is apparently the time you can get the mouth sores. Then with subsequent treatments and neulasta shots they kick in quick and you are less likely to get the mouth sores. I think that is supposed to apply to the possible bone discomfort associated with the neulasta shot too - worse the first round. Everyone is different though! Did you get neulasta?0
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Omaz and Musicalmom- What you said about the neulasta and the SE's makes alot of sense. I had mouth sores with my 1st treatment only. My dentist gave me a lidocaine med which really helped with the mouth sores. And, I definately think the bone pain from neulasta was worse with the first 2 treatments. I do take claritin 30 min. before my neulasta injection.
Tomorrow is my first MUGA since starting herceptin. I'm interested in seeing if my EF has changed. And...did I tell everyone that my BRCA testing was negative.....HURRAY!!!
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I had mouth sores with first tx only too. Used a med called Caphosol - was a lifesaver. Interestingly, I had another bout with mouthsores right after the most recent Herceptin - also a resurgence of bloody noses. Fabulous! I went to my regular doc on Monday to have my ugly fingernail/finger looked at. She did a CBC, CMP, lipid panel, wrote a scrip for my high cholesterol med, wrote a scrip for the ugly nail, and gave me a new referral to the derm to also look at the ugly nail. She did say they might have to take the nail off. Then she said my weding rings were pretty and she was sorry that my wedding ring finger had an ugly nail. I thought that was very nice. She is about 5 months pregnant and when I told her my husband came to every chemo she got teary-eyed.
Christean - yay on the negative BRCA! That was an early bright spot for me - they drew the blood the day I was diagnosed since I am adopted with no access to family medical history. I was so relieved for my children.
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Man I must be the only one on the planet not getting Neulasta. My cancer center must not be in bed with that company.
Christean...great news.
Survived the day but ended up getting a speck of dry pool chlorine in my eye which caused a burn. When it rains it pours.
Sleep tight ladies.0 -
musicalmom some insurance companies won't pay for it until your white counts go down and you actually need. It's a $3000 (US) shot.0
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Hello all....#3 in the chair tomorrow. Last round I didn't seem to have some of the nasty side effects like the first round no D for days on end, no mouth sores, but I was an emotional wreck. Look at me and I cry for no reason. Not sure if it was the chemo or just being so overwhelmed beteen the surgery annd my life being turned upside down on the drop of a dime.
Musicalmom-I'm not getting the neulesta shot either. My onc doesn't want to do it. She said she thinks I'm too young. That made me feel good.
Christean-great news!! I need to get mine done yet.
Maybe someday I will zumba. Wanted to try it and was going to until my dx. For now I will continue to just walk. Need to lose weight though. Has anyone had cravings? I will get cravings for cottage cheese, peanut butter, and anything sweet during the time I lose my taste. Strange......
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Dear Lago, I need to pick your brain. In spite of a huge rsponse to chemo I still have cancer left. The mets to the lung and liver are too small to be felt by surgeons so they are not going ahead with the surgery that would "cure" me. Onc has thought he was being reassuring by telling me they will be scanning every 3 months but now also doing bone and brains scans also. He said probably by Jan/Feb tumors will have grown big enough to remove. And he is saying WHEN they grow back not IF.
What I am not getting is that I will be on herceptin til April. His take on it is that the H will probably keep new cancer from developing but will not stop existing cancer from growing back or possibly breaking loose and moving. I have tried reading the Herceptin sites themselves and am just not getting it or something!! My liver met was tennis ball sized and is now approx 1mm. I have 3 lung mets about the same size. The surgeries were going to be full resections because the tumors are very close to the vena cava and pulmonary arteries.
With your extensive knowledege of HER2 I was hoping you had some thoughtson this. if anyone else knows something please chime in also.
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Lily - I wanted to suggest that you post your question on http://her2support.org website as well. They are devoted to HER2+ BC.0
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I checked out the link, It looks like a great set, and that seems like a fair price :O)
I am super exhausted from chemo 5 of 6 today. ( one more to go,,YAY !!) already losing the taste in my mouth tonight :O( and I have the steroid rash on my cheeks and chest already .
Good night all you wonderful warrior ladys. Chemo sucks, but it sucks the cancer right out of us
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lilylady I'm not expert on HER2+ or Herceptin. My knowledge on how to treat mets or stage IV is limited but usually they treat to control not to cure. The feeling is once it moves on to other organs they aren't able to cure. They hope for remission but treat to slow or stop growth or spread. You will be on Herceptin for life unless it stops working. Then there's another drug they try. They are all about quality of life.
Makmak on this board might know a bit more since she is HER2+ with mets.
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Hi ladies, I did tx no. 2 yesterday, unfortunately had a reaction to the Taxol but they sorted that out pretty quickly. I am glad to read that the Neulasta shot isn't so bad the 2nd time around, I had a hard time with the bone/joint pains with that plus the ones from Taxol. (am I allowed on here since I get Taxol and not Taxotere??) Although if I react again they will change it, funny since the first one was fine.
My BRCA results were also negative, a huge relief! Congrats Christean, nice to get some good news occasionally.
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Grimbol - My onc had me take claritin the day of neulasta and for several days afterward to help with the pain.0
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Thanks Omaz, yes last time I didn't have the Claritin until after the shot, once the pain set in I sent DH to buy some, but that was probably too late, so this time I am set. I took the first one yesterday afternoon and will take the second this afternoon either just before or just after the shot.
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Oh, however my onc's nurse says she's never heard of taking Claritin!!! I am going by what you guys say, much more reliable info!!
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grimbol - of course you are allowed here! I grew up just over the hills from where you are in Northridge. Do you get Benadryl in your pre-meds? Some oncs give it to try to ward off any allergic reaction. My onc was aware of the Claritin deal but doesn't volunteer the info to patients. I already knew about it and asked if I could take it and he said absolutely. I think because it is not fully understood why it works - they are reluctant to tell you to take it. The thought is that the antihistimine in Claritin helps control the edema (fluid) caused by the marrow expansion in the bones, thus making it hurt less. The first Neulasta causes the largest expansion and usually hurts the most, subsequent injections do not cause as much expansion, so hopefully hurt less.
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grimbol, my onco acts as if he'd never heard of such a silly thing! claritin? nope. never heard that. i took it anyway and i've had two neulasta shots without any reaction whatsoever. i don't know why it works ... i only know that it does. good luck!0
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thanks guys, much appreciated. Way too much nausea today, yuck! oh yes I do get Benadryl, in fact yesterday they gave me a double lot because of the reaction I had. Stopped the Taxol and pushed the Benadryl thru and then started the Taxol again just much slower. I was ok then.
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Grimbol - I had to take my nausea meds regularly for the first few days, every fours hours. I was told to stay ahead of it.0
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I found a clinical trial that is looking at exactly this issue LINK
Prevention of pegfilgrastim-induced (neulasta) back and leg pain by administration of the antihistamine loratadine (claritin) Patients who experience significant pegfilgrastim-induced back and leg pain during the first cycle of pegfilgrastim therapy are randomized to receive loratadine or placebo during the second cycle of pegfilgrastim therapy
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omaz - what a little detective you are!
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claritin really works, I am getting my nuelasta shot this afternoon, and I have already taken it, and I will each morning for the next week. I haven't had any bone pain 0
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I am almost looking forward to the shot today to see how well the Claritin works, almost!! I now have compazine and Zofran, I am alternating them, and drinking Ginger ale, doing a little better, thanks.
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Omaz I just looked at the link. That is so great that they are going to actually research the effect of claritan on neulasta pain. Of course, many of us already know it works but it would be wonderful if they could get scientific validity. Much like icing the nails, my MO and nurses looked at me like I was crazy when I suggested it. Perhaps one of these days it will become standard care. In the meantime, it's a good thing we have each other
As I look at all the advances in treatment I often think of something Dr. Slamon said in an interview (it's in the "extras" on the video "Living Proof"). He was discussing Herceptin and the current need for it to be administered with chemo and he referred to chemo as "slash and burn" treatment (because it indiscriminately kills good cells along with bad) . He went on to say that the future is in targeted treatments like Herceptin and mentioned a trial with 2 targeted treatments and no chemo. I often wonder if all of us will look back on chemo someday and say "remember when they used to use chemo?" Of course, I also hope we are someday saying "remember when people used to get breast cancer?" I find all the research very exciting and people like Dr. Slamon are such visionaries...
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dragonfly - my BS used Mammaprint to examine one of my biopsy samples and they return a genetic assay of the tumor sample. I was pretty perturbed that he ordered this because even though it is FDA approved my insurance company considers it "experimental" and consequently will not pay for it ($5,000 test!). Turns out that my BS is participating in a study with the company that owns the intellectual property for Mammaprint. Just like the targeted therapy of Herceptin, eventually they will design targeted therapy tailor-made to your tumor, courtesy of the genetic assay info. That is the future for treatment I believe. No more one size fits all approach. Fortunately, when I told the BS office about the non-payment by my insurance they asked Agendia to write off the testing costs.
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Omaz You sent me several articles about icing of nails when I was in chemo. My MO and nurses still thought I was crazy even when I took the info to them. I got varied reactions-one nurse was very rude and would say "you can put those frozen peas away now!" when she would take the Tax bag down and put up the next bag while another nurse would quietly say to me "well, I don't see how it's going to hurt but if it helps, why not?" It always amazes me how narrow-minded some medical professionals can be and besides, what do they care? If I think that getting chemo while wearing a chicken suit is helping me, they should just keep their mouth shut and leave me alone as long as it's not hurting anyone (well maybe I'd need a psych consult, but you get the point). I work in healthcare so I'm around doctors all the time but this experience has shed a whole new light on things.
I've been comparing notes with my SIL in England who is Triple Neg and received her treatment under national healthcare. Although I realize that there is good and bad in everything, she never had the stress of opening countless insurance statements and bills and fighting to get it right because everything was covered. She and the family were offered "caregiver support" and she was even provided with accupuncture as a standard part of her care-imagine that! She was even directed to an online recovery course after chemo and Rads. I know that the down side is that she couldn't shop around for doctors and her team was assembled for her but from all I can tell, her treatment was excellent. Sorry for the rant, think I'm just in a mood this week. I'll step down off my soap box now...
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dragonfly1,
I totally agree with you. I watched "Living proof" and the extras, and thought to myself, why do we have this stinky chemo, and not just herceptin. I do look forward to the day, when there is a cure for cancer and it is a rare thing.
I had an almost pain free nuelasta shot this afternoon, because the nurse took 15 minutes to push all the medicine in. It was long but worth it. We just had a visit while she slowly worked it in
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As long as your SIL lived in the right post code in England. Not every Health Authority will pay for Herceptin, it's not cost effective!!! There is good and bad in both, but I would rather be able to get the care than be denied or have to wait months just to be seen. I am from England and still have all my family over there. My dad had a heart attack a few years back and I was upset at the information they didn't get because the tests weren't deemed cost effective due to his age! He survived and is still living just fine so maybe I have just lived here for so long now and think everything should be done, I don't know. However I was shocked to find out the rules for Herceptin. It can be a life saver. However, at the same time I am not enjoying seeing all my bills arrive in the mail each day!! Thank goodness for Health Insurance. My DH lost his job in April, but they turned it into an early retirement, and negotiated our health benefits to continue thru age 65. I am so thankful for that, I can't imagine going thru this with no insurance.
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