Taxotere, Carboplatin and Herceptin
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Thanks everyone - I was so happy when I heard that news this morning that I just had to share!
mtndawn - so far so good, but also relying heavily on the pain meds. Drain output is down to about 40 cc's for all four drains total. As shown in my signature line - I also did ooph at same time, so have some minimal pain from that as well. All things considered, very happy to be cancer free right now!
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More great news to share, my BRCA tests were negative for the genetic mutation!!
So thankful for good news!
Happy for all the ladies having wonderful success with TCH, it's a great protocol, I'd say it's worth most of the aggravation we've had to go through!
~Melanie
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Congrats Melanie!! That is absolutely awesome news!!
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stlcardsfan-So fantastic!
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stlcardsfan - CONGRATS! that has to be the best news ever.
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Whew, Melanie! One less thing to fret over!
Dawn
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stlcardsfan, Just got to read back over the last page- Fantastic news!! So happy for you!0
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Melanie - that is great news!
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Lady_Modonna
Great news on the results of your BRCA test.
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Many women posting in the various forums talk about the devastation of temporary hair loss from chemo and the anxiety they suffer as they await the return of their hair.I would like to alert women who are about to be treated with taxotere for early stage breast cancer (Important that it is early stage).Oncologists know but may not tell you that there is a risk of permanent hair loss with taxotere. I know because I am one of the unlucky ones.What oncologists may not tell you is that in early stage BC you MAY have the option of being treated with taxol rather than taxotere. Taxotere was substituted for taxol because it is cheaper and more convenient for the hospital/insurer.The study comparing taxotere and taxol did not show any better results for survival or recurrence.What the study showed was that the drugs were equivalent, ie equally effective.What the study didn't report was that there is a 6% risk of permanent baldness with taxotere. That is for every 1000 women, 60 will have permanent hair loss. It may sound like a small risk unless you are unlucky like me (and other women, some of whom have written in on the permanent hair loss thread) who are really suffering this horrible LIFELONG condition.0
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I just found some literature on permanent hair loss. It's mentioned under side effects. Lots of info here -
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That's the point I was trying to make: that this information needs to be provided BEFORE treatment begins. I found PLENTY of information about this devastating side effect AFTER it was too late and I couldn't figure out why my hair wasn't returning like they said it would. I would think that most women would agree to any treatment recommended by their oncologist.
At the time I was certainly in no shape to do a literature search on the side-effects of the various treatments and naturally I went on the word of the oncologist. In fact we who have experienced permanent hair loss have found that our oncologists pretty well state categorically that our hair will return. And when we show them what has happened to us, they say they've never seen it before.
The information about the potential for this devastating side-effect of taxotere - permanent hair loss - needs to be discussed with patients at the time treatment options, if any, are presented. We hope to educate women so that they are aware that even if it is not discussed by their care-givers that this risk is real.
My lost breast can be reconstructed. My hair will never return and I am grieving for this loss.
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((((((((((anneoz))))))))) my heart goes out to you and others dealing with this. So far, I believe mine is coming back, but I only had two taxotere, then had to switch to taxol, so maybe that helped. This is definitely something I intend to talk to my Onc about to be sure HE is aware. Thank you for taking the time to make us all aware.......
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I was diagnosed w/ breast cancer last year at age 32. I had a right breast masectomy w/ clear margins even though I had a total of 8cm of cancer in my right breast and lymph nodes(Praise God). I received six treatments of TCH, once every three weeks. I had 5 1/2 weeks of radiation on my chest wall. I was also scheduled to continue w/ the herceptin once every three weeks for one year. The Herceptin began to lower my Ejection Fraction of my heart, in March 2010, after 10 months of getting the Herceptin. The Herceptin was stopped until my EF got back to normal levels. I have been given the ok to continue w/ the Herceptin, but am considering ending the treatment where I am at and not risking permanent damage to my heart. I have had CT scans since the surgery that were compared to pre-surgery scans. They are clear. I have also heard that there are some preliminary studies showing that there may not be any added benefit to 12 months of herceptin over 9 months of herceptin. I made it through 10 months and feel like I shouldn't risk damage to my heart. Does anyone have any information on the new studies, similar treatment, etc?
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I do think a person needs to consider the cost of treatment for anything. My friend took an arthritis med and she died of throat and lung cancer. I do not know if she knew this was a chance of taking this drug but then it helped her life for a while. so many things can cause something else. My big problem was not with Taxotere but Carboplatin. You can drive to a large city with all it's pollution and get something but would you stop going into a city the rest of your life? A person can cross the street and get hit by a car would you refuse to cross? 2 men working on the road was hit by a car and killed yesterday. do you think men and women working in semi dangerous jobs will quit working because something might happen. All the papers they gave me to sign before I took the poison they gave me for cancer told me of side effects and I did go on the computer and look at all the problems. anything you take has a chance of causing something else. I do know if you take nothing you will die of cancer. I would rather have my life and no hair than lose my life to a horrible cancer. My brother lost his life to cancer. I would rather have him bald than dead. So ladies we like our hair and our body parts but if there is choice I choose life.
Carolyn
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Carolyn ~ I agree with your perspective. I think the ultimate "hindsight" question to ask ourselves is, "If I had known about this side effect or consequence of treatment before beginning treatment, would I have changed my course of treatment or rejected treatment?"
For me, the answer is an unequivocal NO!
For me, personally, it was the loss of my fertility that had me a little angry and upset after treatment ended. I did not know, until it was far too late, that I could have asked for Lupron shots to shut down my ovaries during chemo. The idea is that if your ovaries aren't functioning during chemo, the chemo-drugs will not attack them. So then when chemo is over, you ovaries may "come back to life" and permit young(er) women to still pursue having their own biological children once this nightmare is over.
Well, in hindsight, the reality was that I was being treated at a Catholic hospital that would not have even offered me the treatment if I had known to bring it up. I would have had to delay the start of chemo, find another oncologist, and take my chances on a protocol that is still experimental in preserving fertility in young pre-menopausal cancer patients. Even if I had known about it, I have to be honest with myself and realize that I probably would not have pursued it.
But when I initially heard about it, I was angry, and a little disappointed.
But if this disease has taught me ANYTHING, it's about "necessary losses." Sometimes you have to give up some dreams, lose some things, be it a breast or two, your hair, some lymph nodes, and yes, even your ability to have your own children, or in order to gain other, ultimately, more important things, like more time in this life!
This disease robs us of many things, tangible and intangible, and it is not for me to make the "WasItWorthIt?" calculation for anyone else but myself.
Joel 2:25 says that God will restore to us what the locusts have eaten. I can only rest in that promise that while some dreams had to die, right along with the cancer, I DID NOT DIE, and God has a new dream in store, ready and waiting for me to embrace it!
I embrace that promise every day! Even with my bald spots and shriveled up ovaries.
Alaina
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anneoz~
I really feel for you...
As I used the Penguin Cold Cap during treatment with TCH, I was able to keep my hair. I do not think anyone could understand what you are going through unless they walked in your shoes.
Hugs to you.
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BlessedbyJesus, I know we are all awaiting (anxiously) for the results to come out on how long herceptin should be continued for adjuvant treatment. The HERA study (I think that's the right one) has a 1-year arm and a 2-year arm, and I've seen/heard in several different places that the results of the 2 year arm are supposed to come out in early 2011. As for the shorter studies, there have been a few small studies that show similar results for a shorter duration as compared to the 1-year, but I think the big studies looking at it are just getting going. Until then, we are forced to do what we are able to do, based on our heart function and current standard of care. THe 10 months of herceptin that you got is pretty darn well close to the current recommended year. If you need to stop, I wouldn't think 2 more months would really make that much of a difference. My onc keeps telling me that you either are a herceptin responder or you're not (of course this is just her opinion--she really doesn't know) so that's why she thinks a shorter duration of herceptin is probably going to end up being enough for most early-stage cases. Widespread disease, she feels differently about.
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i am having horrible bone pain that jumps all over the place. today my left rib is so sore, a few days ago it was my hip. And my legs are really achy. I have bone mets and dont know if it is from that or the chemo. Also i had my 2nd chemo a week ago and still have all my hair. When did your hair fall out?
Tonya
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by hair started to get very dry on the ends about 15 days in. The shedding had started to increase as well. Just running my hands thru it yielded clumps. I opted to get it shaved by day 18 as my DH didn't need to vacuum up my hair along with the dogs. She sheds a lot of hair!
All that was left was 1/4 inch stubble, which fell out over the next few days. I also used duct tape to help get rid of it. Didn't hurt as the ends were dead anyway.
I also ached all over from this combo starting day 3 or 4 and lasting until about day 11 of each cycle, believe Taxotere and Herceptin are to blame.
On Herceptin only now, and my knees have been very achy lately. Just had #9 on Wednesday. It seems the aches are getting worse, but then again I just had surgery 1 1/2 weeks ago, and so my activity level has been down somewhat. Once I get up and moving the aches seem to subside, or maybe it is the vicodin I am on for the bmx pain.
Sorry I can't be of much help, hopefully some of the other TCH'ers will jump on and give there hair stories.
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Tonya, my hair started falling out day 13, and I shaved it off day 15. Yours is really hanging in there, maybe you won't loose it. I haven't had any bone pain. Did you get neulasta? It can cause bone pain. Also, one of the potential side effects of herceptin (I think) is pain at the tumor site. So, it could be the chemo working on the mets.
Anneoz, thanks for the info. I would probably have dismissed it if I had known about it at the beginning, though. That was such a scary time, and I would have played the odds on that one. The protocol is working well on my cancer, and I have three little boys to live for, hair or no hair. That will be a tough one, if I get it though. Hugs to you. Maybe they will find a way to reverse it for you.
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I am not getting neulasta. But i have alot of bone mets so it could be the herceptin then. This combo is really hard, but i know its supposed to really kick cancer butt so i know it is worth it. I am doing 6 rounds and just did #2 so i am really hope it will get better not worse.
My hair is doing really good. But i know i will lose it at some point so im not getting my hopes up...and i am with you Dawn, i have 9 kids so i dont care if i am bald i have to beat this.
Thanks ladies, you make me feel better knowing that all this is "normal"
Tonya
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Alaina, you are right about the hindsight. I have done my looking back wishing I had not none something this way or that. It is done now but for me I wish I had not had radiation because of the infection I am having from a biopsy after it was all finished. The surgeon did tell me it would not heal well but I certainly did not know how much infection it would have. I guess it will heal eventually but still was the drug study worth doing this? See this is something I just did not know. I wanted to get the study drug but then could not stay on it. I did my homework but a person just can't know how the body will react to anything. Like losing hair and it never coming back. I do know now that there is a blood pressure med that helps hair loss. My husband was getting very thin all over his head. I thought maybe just aging but when the cardiologist gave him Metoprolol for blood pressure after his bypass and never said anything about his hair getting thicker. One day I was watching DR. OZ and he mentioned this med for women who were getting thin on hair and not because of chemo just because of a lot of different things. Anyway my husband and I had just talked about how fast his hair was growing and how thick it was getting. when I saw the show I remembered what we had talked about. I may ask my doc who takes care of my blood pressure about taking this. I do not have the thick curly hair I used to have but I do have hair so I am not so set on getting this med but it would be nice if I could take care of my blood pressure and thicken up my limp straight hair too. I may not have blood pressure bad enough to take the med though so I sure don't want to open another can of worms. If I had know how bad my blood count would get would I have taken the chemo? Yes I would and I may be on Procrit for a long time and it is very expensive but I can work and do most things I want to. I talked to a woman yesterday and she had breast cancer 16 years ago is still fatigued but she is happy to be alive. I had a young friend that died of breast cancer 10 or so years ago because she let it go too long and she did not have Herceptin then. she may have went through all that and died anyway but maybe not. Our preacher's wife died from breast cancer about 12 years ago same thing she did not have some of the stuff we have today. She also let it go for a while until her insurance kicked in. She ended up with brain met and other met. there are women and children that loose all their hair because of alopecia (sp?) and they will never get their hair back. No chemo did this. I guess I am am just saying how much is any of this worth to a person. My friend who died never married and so she never had children or any kind of thing she might have hoped for. The preacher's wife had 3 children but would never see her grandchildren. I try not to say "should have, could have, would have " and just look forward and live life, We did not choose this disease for sure, and I may have done something to cause it I do not know. If I did I would choose not to do that but you can not go back and change things you just have to live the life God is giving us now. that is why I call it a new normal.
I have arthritis and have had it since I was in elementary school and I have fibromyalgia. I have constant pain. I do know if I get up and move I can feel better. If I just lay around it hurts worse. also distraction helps me in my pain. the Neulasta did hurt very bad and the onc gave me some heavy duty pain meds but I don't want to live on that. I was glad to finish the Neulasta and I am so glad it is not what I am taking now. it is for white cells and my problem is red cells. I do know I can have cancer in my bones or blood eventually. I hope not! I will deal with that when the time comes.
I wish everyone some peace in your souls and be able to live with what life has dealt you. Most of all I wish you life.
Carolyn
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Interesting about the BRCA testing... my oncologist saw no need for me to get it, but it seems like some of you with a similar diagnosis have been advised to do it. There's been no breast cancer in my family, except DCIS in one of my dad's cousins-- nothing in grandmothers, mom, aunts, sisters, first cousins. Did your docs explain why you should be tested? My radiation oncologist (I just started radiation) said my girls (now 20 and 17) will have to start mammograms at 35 and get them annually, but didn't say anything about genetic testing. Hmmm....
Doing well post-chemo. Chemo ended 5/25, had my first Herceptin and Avastin on 6/16, with almost no side effects. I never did lose all my brows/lashes, though they're thinner, but not nearly as bad as I thought. I shaved my head a few weeks ago when the white wispy stuff was driving me nuts, and now it's coming in darker and "real"-- still not much, but it is growing. I feel pretty much totally recovered from chemo, and so far radiation is easy. My biggest issue is time-- I am just buried with the responsibilities of my own business and deadlines, and dealing with all the medical stuff takes so flippin' much time! But I am grateful that my girls are older and so self-sufficient, and my husband can deal with a lot of the household stuff. I really feel for those of you with little kids. You've got the biggest challenge of all. Hang in there!
Colleen
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My gynecologist advised me to get BRCA tested because:
1. I got breast cancer under the age of 50 (I was 38 at diagnosis), pre-menopausally
2. I had a (maternal) great-aunt who died of ovarian cancer
Those two things made her worry that I might be at increased risk for ovarian cancer IF I was BRCA+. If the test came back positive, she wanted to take my ovaries.
The test, thankfully, came back negative. So no urgency for an oopherectomy.
My aunt (dad's sister) just got diagnosed with breast cancer, but she is 68, and way-post-menopause. So there still doesn't seem to be a strong genetic link. She just had surgery, and so far her docs are saying there is no need for chemo/rads.
Most insurance companies require that you have 2 relatives with breast or ovarian cancer to pay for the BRCA test. Just make sure they know that YOU count as a relative of yourself and your doctor codes it correctly!
Alaina
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Hi Colleen,
My onc referred me for BRCA testing primarily because of my age at diagnosis-38. Once I spoke to the genetic counselor, they determined I was a good candidate for testing because I have a maternal cousin who was also diagnosed with bc at age 38 and because my dad is adopted and we have absolutely no knowledge of his family history. Like Alaina my onc wanted to remove my ovaries if I was positive, and she also recommended a bilateral mastectomy in that case.
Thank God my test showed I don't have the genetic mutation; I'm so relieved to have this information! My insurance paid for the testing and I'm resting easier that I have a few less things weighing on my mind!
~Melanie
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I did not have anyone in my family that had cancer anywhere on their body. My brother and I got it within a few months of each other. If I got tested it would be on my own money. right now I am still working on dr bills that seem endless. I have insurance but still have to pay some. I also had a hysterectomy at age 29 so nothing there to worry about. I guess mine was from the environment or whatever causes it. I guess when we know what causes cancer then it will be easier to keep people from getting it. My husband's grandfather had lung cancer so I guess my children and grandchildren have a greater risk. My daughter's husband had cancer at 27 so my grandsons will really be at risk.
I hope everyone has a happy 4th
Carolyn
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I am 5 weeks post last chemo. I am 2weeks post herceptin only. This last week i have had waves of nausea almost evreryday. Not horrific, but enough to make me take one of my nausea meds yesterday. Has anyone experienced nausea when they were on herceptin alone. When I was taking tch, at this stage of the cycle, i rarely got nausea. So, I am a little puzzled by this.
V
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My reasons for being BRCA tested were also young age and history of cancer (although not breast cancer) in the family. Also, my grandfather had multiple cancers and she said that's another clue as to something genetic going on.
The doc I saw said they pretty much go by the "double hit" theory with cancer--if you have a defective gene (one hit) it takes only one more hit (I know it's more complicated than that, but this is just to simplify it) to get your good gene. The younger you are, and she used under 40 as the breaking point (I was 38), the more likely and more suspicious of a cancer being gene-related rather than environmental. Also, the cancers in my family were colon and uterine, which sometimes fit other familial cancer patterns as well. BRCA is much more common, so she decided to start there. I also ended up being tested for Li-Fraumeni (negative) and she was going to do the HNCPP (colon cancer gene) but decided at the last minute that I didn't fit that criteria. The problem with any of the testing, though, is just because the tests for those particular genes come back normal, that doesn't mean you don't have some other defective cancer gene that they just don't know about yet. As with everything else along this cancer joy ride, sometimes it's just a big crap shoot.
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Thanks to all for your very helpful responses. So my onc. said no need for genetic testing for obviously good reasons-- I was 51 at diagnosis and there's no internal cancer in the family. Makes me rest easier for my daughters.
And now back to getting ready for our 4th party! We live right next to the Rose Bowl, which puts on a spectacular fireworks show, so we have a crowd coming! I didn't know if I'd be up to it, given what I've been through these last few months, but it's great to have 17- and 20-year-old daughters, who are actually useful... they're outside decorating as I write this!
Happy 4th, all
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