Carboplatin?
Was Carboplatin a part of your chemotherapy, even if you tested negative for BRCA mutations? I was originally told by the 3 oncologists I saw that they would only add the Carboplatin to my weekly Taxol treatments if I tested positive for a mutation, which I did not- however based on the most recent research I still want the Carboplatin. My doctor has agreed to allow me to add it anyway, as I want to be as aggressive as possible (I'm only 31) but I am obviously concerned about the additional side effects. Did you find the weeks you received both the Taxol and Carboplatin the side effects were similar to when you received AC? Was adding Carboplatin part of your doctor's normal protocol, or did they add it for another reason? Thank you!
Comments
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Hi Sam, I'm in Canada so I'm sure the protocols are a little different. I had FEC -D chemo the first time. Had complete response but still had whole breast radiation with boosts. 18 months later I felt a thickening under the scar of lx. Sure enough I had a local recurrence. Salvage mastectomy was performed and I begged for chemo. She took my case to the tumour board and they agreed to try carboplatin and gemcitabine. My TN came back as metaplastic which is very rare but my MO said that newest studies showed promise for carboplatin for TN despite being brca negative.
With docetaxol I had horrible bone pain but no nausea. Carboplatin/gemcitabine combo knocked the shit out of me. I gained 35 pounds and felt totally exhausted as my blood counts were affected BUT it was totally doable and I would do it again. Good news is that was two years ago and I'm feeling really good! I would do everything possible available to irradicate this- but that's me. My one thought has always been the regret i would feelif I didn't do everything possible.
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Thanks SLV- I will do it, as I want to do as much as I can to fight this. It appears adding Carboplatin will increase my chances of a PCR, which is the ultimate goal. My MO mentioned they are researching this a lot now, and she expects 5 years from now it may (or may not) be part of standard treatment.
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Hi Sam,
I have a slightly different story to consider. Like you, I wanted everything I could get to combat this. I was diagnosed in April 2015 with a 2.2 cm TNBC. So I enrolled in a clinical trial that did 12 weeks of Taxol followed by 4 ACs (given every other week). The trial drugs that were added were Carboplatin every 3 weeks during the Taxol phase, and also I either got Veliparib or a placebo during the Taxol phase. I was very pleased with this arrangement because I felt I was getting the 'varsity team' of chemos....the standard of care plus more.
But in the end, it's not clear to me at all that the Carboplatin benefitted me, and I seriously wonder if it hurt me. Here's why. Every time I had Carboplatin, my blood counts took a HUGE beating. I felt fine, overall could not complain about how I tolerated chemo. But I had 4 chemotherapy postponements due to low blood counts, and each time it was right after a carbo treatment. After all of this neoadjuvant chemo, I had surgery, and unfortunately still had residual cancer (although it had shrunk considerably, down to 0.8 cm). I was devastated; I was sure I was going to get a pCR.
I will never know the role carboplatin played. I suppose it's possible that it helped, and if I didn't have carbo, my residual tumor may have been bigger than 0.8cm. But I am inclined to believe that the delays in chemo that were caused by carboplatin (my taxols were pushed off by a week in each of those 4 instances) may have prevented me from getting a pCR. Although my MO tried to reassure me that a few one week delays would not be a big deal, there is a reason that the weekly timing schedule is set up that way, and delays can have a negative impact.
In the end, I guess I wish I had not participated in the trial and had the carbo. But if I go back to who I was 2 years ago, I would have had a hard time saying no---I had very much a, "more, more, more!" mentality.
I think the evidence is very split on the benefit of carbo for BRCA negative women like myself. Read this article that summarizes the two most recent (and somewhat conflicting) studies:
http://www.ascopost.com/issues/january-25-2016/rol...
The American study is more relevant; the German study I believe did not have the normal standard of care drugs involved.
Anyway, I do not mean to dissuade you. You may not even have your blood counts drop (although carbo is notorious for doing that for many women). I just realized that I did not even have the imagination back in April 2015 to picture what a possible downside of "more, more, more" could be. I thought, I'm tough enough! Give me everything! I never knew that having extra toxic chemo could jeopardize the scheduling of my chemo, and perhaps with no benefit to make up for it. So this may just give you extra questions to ask your oncologist to spur a longer conversation.
Good luck with your decision. It's so hard, but once you make your decision, you will feel so much better and hopefully never look back!!
Tulips
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Thanks Tulips. My doctor has mentioned the risk of my blood counts dropping and that is really her only concern with giving it to me. She said she would be willing to add it, but it was really with the caveat that if it starts to delay my Taxol treatments we may have to stop them. Her justification was, she knows the Taxol works and wants to make sure I get it, the Carboplatin as you said may or may not add any benefit. Did you do neupogen shots on your Carbo weeks? This is something we discussed to help keep my counts up. How did the side effects compare to the A/C?
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Hi Sam:
I was in Australia at the time of treatment and my plan did not include Carboplatin. I had my husband and his father (both physicians) talk with a BC specialist in the US and she said she would most certainly add Carboplatin to my treatment plan. We took that information to my Oncologist (who had coincidentally been to an Oncology meeting the night before to discuss the use of Carboplatin in TNBC patients) and he agreed to add Carbo to my weekly Taxol.
I must say, the Carbo did knock my blood counts way down and I had to skip treatment number nine as a result. In the end, I received seven Taxol/Carbo (all in all I had four A/C, eleven Taxol and seven Carbo) treatments. I opted to stop the Carbo after I missed treatment number nine so that I could maximize the remaining Taxol.
I didn't feel bad with any of my treatments. I had some stomach cramping but never nausea and it was at it's worst toward the end of treatment but nothing that was too bad. I was able to workout and stay active throughout treatment but did feel I was winded easier during the Carbo phase as my counts were low. I also had to have two transfusions due to low blood counts in order to proceed with a couple of my treatments.
I did end up with a pCR and most likely would not change a thing if I were to have it all to do over.
Good luck with your decision and treatment!
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Hi Sam
I'm in the UK. I had ECx3 and 9x weekly tax / carbo. I'm 56 and have not had BRCA testing. At the time my onc said he wanted to throw everything at it and I was more than happy with that. I did get a pCR and went on to have lx and rads.
The tax/carbo was doable although the last 3 were tough and each week I wondered whether my bloods would hold up enough to allow treatment to go ahead - but they did! I took filgrastim injections (GCSF) for 3/7 after each cycle. I did despise these more than the chemo but they did the trick in keeping my wcc up enough.
On reflection this was a good regime for me and if I had to make the same choice again, I would
Good luck with your treatment
Chris xx
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Thanks ladies. I finished my last AC treatment on Friday, and told her I would like to move forward with the Carboplatin with my weekly Taxol starting in 2 weeks. I will be getting weekly Taxol and Carboplatin every 3 weeks (it sounds like some of you recieved the Carboplatin weekly as well). Fingers crossed my blood counts hold up and nothing is delayed! I really appreciate your feedback! My 2.5 cm tumor is almost impossible to find now, so I'm hoping these extra drugs will take care of any extra cells that may be floating around. I have babies I need to be around for!
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Just my 2 cents - My first order of chemo consisted of weekly Taxol plus Carbo every 3 weeks and my BRCA testing came back negative as well. My oncologist told me he gives all of his patients Carbo now as treatment for TN as it has studies behind it to be very effective.
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hello!
I had AC x 4, Taxol x 12 and Carbo x 4. My blood counts took quite a hit towards the end and I had to take 2 blood infusion, plus filgrastim injections after each treatment. The filgrastim injections made me feel worse than the chemo. I hurt all over, muscles and bones. I wouldn't so anything different. So thankful I opted in for the study and was chosen to receive the carbo.
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Thanks for the feedback! I start Taxol and Carboplatin this Friday, and I am a little nervous. I am sure everything will be ok, just anxious about the unknown (AC wasn't too bad, so I'm hoping this will be easier). I took the filgrastim shots during my AC and they were pretty rough, my doctor hasn't mentioned adding them to this regimen (I'm hoping I can skip them- I had terrible bone pain in my skull). Did you happen to get a PCR when you were finished?
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I had my mastectomy before chemo. My MO told me in a previous study she conducted, she had 2 patients with TNBC that had chemo before surgery and were given carboplatin and they both had PCR. She was very happy when she found out I'd get carbo as well...i entered into a study of the effectiveness of carbo on TNBC. Best of luck to you. I think the worst side effect i had from carbo was everything tasted terrible....except eggs...lol...eggs tasted good through out my treatment
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So I knew this was a likely possibility, but my treatments have already been delayed likely due to the Carboplatin. I completed 4 DD AC pretty easily, (was delayed by a week after my last one because of my white blood counts). I finally got my first Carbo/Taxol last week and went today for Taxol only and was delayed again. I'm not even really sure why I am writing this- Just venting I guess. I so much want to put this behind me and I still have 11 treatments left! I feel anxious every week going into that place, it feels even worse going home without treatment knowing I have to come back an additional time. I know a few of you mentioned being delayed after your Carbo weeks- Was it everytime? My Dr did mention decreasing my dose next time (that is what they did in the trial for people who had this issue).
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I do not have the BRCA mutation. I started chemo before my genetic testing results came back. My MO added carboplatin because she said it would increase my chance of PCR, which I DID achieve!! The taxol/carbo weekly combo was MUCH easier for me than A/C. A/C kicked my a$$ but maybe it was because I had it after T/C...? I don't know. I did develop an allergic reaction to the carboplatin around dose 7 or 8 and had to stop. Best wishes.
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My carbo had to be decreased as my body was having a hard time building my cells back up and I was moderately anemic. I was delayed 3 or 4 times. I was supposed to finish chemo on 12/16 and I was delayed to 1/12...so about a month delay. I felt the same way you are, I wanted if done so I could move on. I made it through and I know you will too. Everyone told me my body needed some extra rest and time to recover, which I know they were right, it was just hard to hear that.
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Hi Tulip, I just read your post. I'm on Carboplatin now. I was diagnosed in Oct 2016 - TNBC - no lymph nodes involved - Stage 1A - grade 3 - tumor size 1.8cm - my aggression rate was 95% - brca negative. I started my AC & Taxol 8 rounds - 2 weeks apart. They were tripling up on my Taxol bc I only had 4 doses. Post chemo MRI showed no sign of the tumor - I was declared "Cancer Free". I had a double mastectomy a month later and the tumor was there 2mm with 3 live c cells in it and a 80% aggression rate. When I went back to my oncologist - post surgery - they let me know I'd be going back to chemo with 4 rounds of the carboplatin and six months of xeloda (oral chemo). First round went well, second round wbc was 0.8. They gave me 2 shots of a Neulasta type drug - one right then and again the next day - then I did my chemo - so the delay was only 3 days. My wbc went from 0.8 to 5.1 in those 2 days! I'm not sure what the heck was in that stuff but it worked! I have done so well throughout this - but going back to chemo set me back emotionally. I'll take the extra protection - but I'm just having irrational fears. Seeing you as a two year survivor helped ease my fear. Ironically, your post I'm replying to was posted on 4/11 - the first day of my carboplatin. I guess what bothers me is my aggression rate of 95% and then 80% after chemo. Do you remember your numbers on the aggression rate. Our diagnosis are very similar and you doing so well after two years - I'd like to think I'll be okay too. I will be okay, my faith is very strong - but I now that things are winding down - 2 more chemo sessions and then my final reconstruction on June 28th - then I'll just be out there! I have the Xeloda which really is a wonder drug - but was just wondering about your diet and exercise, etc. I think having my four kids home from college has set me off with worry.
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