Anyone with IBC and triple neg?
Comments
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I hadn't noticed what forum it is under. I usually go the the "Active Topics" and that's how I found this thread.
Lindaa, you asked how the rash works with the mx. Usually, if you have IBC, you have chemo first to kill the cancer since the IBC affects the lymph vessels to the skin which is what causes the rash. Then you have surgery and after that radiation. Sometimes you have more chemo after surgery but I didn't that, thank God. After 6 months of chemo don't think I could have handled any more. Because of the high rate of reoccurance, I chose the DMX. Wise decision for me because I already had precancer cells in non-bc breast.
So I hope this helps.NJ
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I had put this under Lesbian, IBC and triple negative just to see if anyone else is all three. I wish that no one was in the IBC or triple negative group. We will all get through this together though.
Lindaa - I went through the treatments that mrsnjband describes above. I had chemo, then a double mastectomy and I am now in radiation. That seems to be the plan for this type of breast cancer. Luckily for me the chemo seems to have killed it all and so the DMX and rads are to prevent recurrence. You can get more info on IBC and treatment options at the IBC foundation website. They are trying to establish an information bank for future research projects on IBC. Maybe this will help to find out what causes this and then cure it for good.
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Thanks Danni and Mrsnjband for replies. I am on chemo now, nearing the end of cycle 6. My breast is still a little pink though. It mostly shows up the day after chemo when I get out of the shower. My onc is afraid taking time off for surgery will give things a chance to progress, since its already in my lymphnodes. I am going to dana farber next week for a second opinion.
my tumors have shrunk a lot, very small now, but they are not gone. I was really hoping the pinkish color would go away. How can they remove a breast with that there? Its not the liitle bumps that some get, but a large pink area covering a very large breast (I'm DD). thnxs again.
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Well, I finished my last cycle of taxol,carbo,avastin. Last scan showed tumors growing again. Oh well. I start DD AC tomorrow. Hopefully this one works.
Blessings,
Linda
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lindaa,
Glad to hear your are done with your chemo, Hope you have good test results. My tumor was small to it was gone by the end of chemo. The rash went away but I still had darkening of the skin where it had been. (I had DD boobs too!) NJ
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lindaa - I assume by DD AC you mean dose dense Adriamiacyn and Cytoxan. I did that cycle of chemo this summer. It seems to have really worked. My tumor markers were all in the normal range after chemo. I had surgery and radiation just to be sure we got it all. I go back for a check up in January and should know more then. Hope the new chemo goes well for you. I will send you positive thoughts.
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Hi All,
How's everyone doing? I'm a little down. I just got my blood test results yesterday and my tumor markers are back up. My CEA and CA 27/29 are both much higher. They were in the normal range after chemo and surgery and then started to go back up during radiation. They are as high as when I was diagnosed but they are close. Is that normal? I'm hoping that since I'm only a month out from my last radiation that I still have some markers left over from it. Any ideas?
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Hi Danni,
Sorry to hear your makers are up, but they are just a tool. Might mean something, might mean nothing. Did you talk to your doctor about it?
I just had my check-up but don't know what my results are since I do the blood work that day. Can't afford two co-pays. NJ
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NJ,
Thanks for replying to my question. I know what you mean about the copays. I usually do the blood draw the same day as my appointment and then they call if it's important. This time the oncologist wanted me to come in a few days before the appointment with him so that he would have the results when we met. He told me that it could be something but he's also seen patients with higher levels that didn't have a recurrance. He wants me to have a PET scan this week so we can see if something is going on. It helps to know your experience and that the markers might not be that important. Others have said the levels might be elevated for other reasons than cancer. I hope so and will let you know what happens. Good luck to you on your tests too.
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Hi everyone,
I just thought I would give you the latest update. I got my PET/CT scan results today. The cancer is back. It's in some lymph nodes in a few places but at least its not in my organs. My oncologist is getting me into the Iniparib or parp inhibitor trial. I will be starting chemo again in February with Gemcitabine and Carboplatin. Has anyone else been on this drugs?
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Hi Danni
I just came across this thread again. I had marked you as a favourite because we were both triple negative and IBC. I am so sorry to hear your news. I hope you get good results with this new chemo. I'll be watching to see your updates. Take care. -
Hi jadlaz,
Thanks for checking in on me. I started the new treatment plan today. I had gemcitabine, carboplatin and then iniparib which is the trial drug. The side effects so far have not been bad. I felt tired afterwards so I came home and had a nap and that helped alot. I go back in on Friday for more and then again next Tuesday and Friday. Then I get to have a week off before starting a new cycle. There are some other women here on the same trial and I heard that the tiredness is their only real issue. I'll let you know what else happens. Hope you're doing well.
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Danni1 and Jadlaz,
Just came across your post after searching for "IBC Triple Negative". I have just been diagnosed. I was diagnosed last year in March with IDC Triple Negative. Went through lumpectomy, lymph node removal, 8 dose dense chemos and radiation. Had only finished radiation about a month when my rash appeared. Just got my PET Scan and hormone receptor reports today for this time around. It is only in my breast, hasn't spread, but is still Triple Negative. Will see oncologist tomorrow for treatment options. WOuld be good to keep up with you ladies on the treatment options.
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I found out that my treatments last week didn't go as easy as I thought. I had a dose last Tuesday and then got sick Wednesday night. I was exhausted and had a horrible headache and was vomitting on Thursday. I called the oncology nurses and took lots of tylenol and my nausea meds and was much better by late Thursday night. I had treatment again on Friday and I kept my meds on board and got through it much better. I was supposed to have treatment again as part of the Iniparib trial today but the drug company suddenly stopped passing it out. My oncologist said he had never seen anything like this so late in the study. I got my carboplatin and gemcitabine anyway and he is working to find out if I can get chemo again on Friday. Has anyone heard anything about this study being stopped?
deborrob-I'm sorry to hear that you got a rash so soon after you had finished your first round of everything. That's kind of where I'm at too. They seem to have several drugs to try for IBC and those of us that are that are triple negative too. I had good luck with the AC/T cycles and now I'm trying something else. I'll let you know how it's going and please keep me up to date on your progress. I'll send you and everyone else lots of positive thoughts.
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Danni, I just saw today on this website (Breaking News on the home page) that the PARP Inhibitor trial has been stopped. Seems it didn't work out to have any benefit like they thought in the beginning. My doc was going to send me on that, but guess that won't happen now.
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Danni, check out this link I posted below. There is a short video clip from a doctor explaining the reason for pulling the trial of Iniparib. Hope your doc finds the exact elixir that you need to fight this new onslaught. My thoughts are with you!
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ljocef - Thanks so much for the link to the video. I have learned alot through research and talking more with my oncologist. The drug company did not get the expected results for the line one patients (those who have not had chemo before). It only seemed to work for some of them. However it still seems to be bringing good results for those of us in lines two and three. So the drug company agreed that we could continue using it as long as the doctor and patient agree to continue. This would have been my week off from chemo so I will start back up next week. I'll let you all know how it's going. Thanks for the positive thoughts.
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Hi everyone, I forgot this thread was here. Like a little secret IBC triple neg club over on the les thread! trying to have some humor today. i am stuck on the chemo merry-go-round and have given it all over to God. I thought I had done that before, but maybe this time I really did. My first was taxol/carbo/avastin which started well but ended with everything growing back. i now know I should have been given DD AC then DD taxol like everyone else. Can't get that one back so moving on. next was the DD AC, which ended up doing nothing for me and I ended up with progression with a very swollen breast, a neck spot, and a spot on rib making me officially stage IV. Between the end of taxol and the 2 cycles of AC, came to around 10 weeks of drugs that weren't working.
When I went to dana farber they considered my lymph status as IIIC "locally advanced' but now it really is a stage IV. Next was lexempra with xeloda pills. I did 2 cycles (3 weeks on, 1 off) but again no real improvement and possibly more progession as the collarbone has gotten bigger and harder and now I have these rice sized skin mets forming a 'chain' from under my arm down my side. Don't really know when they showed up but onc said they weren't there before. We took away the xeloda pills because they weren't working, and moved me to weekly lxempra while my onc researched trials.
So after a tearful prayer session this morning asking to send my healing and it's the last time I ask, my onc calls with news of a trial using gemcitabine and a MK1775 Wee1 inhibitor. I think this is similar to the parp, just a different enzyme being targetted. Of course I have to be off chemo for 3 to 4 weeks - with how fast my cancer is moving this makes me nervous, but I know the standard chemo isn't doing much for me. And of course when I was there on Monday I got the weekly dose, not the full 21 day dose. I would feel better if had the full dose before I ride out this storm. I really feel like this is it - in the sense that this either works or it doesn't and that will be that, as there are few options left. I wish I could have gotten to surgery, that would give me extra edge I need. Right now faith is my edge.
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Lindaa - I know what you mean about the chemo merry-go-round. I'm back on it too and I thought I had given up all control but I guess not. I'm a bit stressed at having it come back within two months of being told that it was gone. I thought the A/C and then T that I had as neoadjuvant worked but I guess not. I hope this new regimen of gemcitabine, carboplatin and Iniparib work this time. I'm sorry to hear that you are now stage IV. I'm was stage IIIc when diagnosed and don't know what they consider me now. I don't want to know as that will just make me worry more and I'm more than just a stage number. Don't worry about where you are in this fight just keep fighting. I have a friend that was diagnosed as stage IV (not IBC) with lung mets and she has been doing fine for years. We just have to stay hopeful that they will keep working on new drugs to treat us. I have faith that we are on the cutting edge and that we will beat this thing. Keep in touch and let me know how it's going.
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So we will both be starting gemcitabine. I won't start for a month and hoping it kicks butt. I have checked posts of others and it seems to have good results. Please keeps us posted. I saw genetic counselor today for brac and I'll see trial doc later this week.
I have faith too! Linda
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Sending prayers to IBC~TN sisters! NJ
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lindaa - I've had 4 doses of the gemcitabine and carboplatin so far. The side effects haven't been too bad. It's definitely better that the ACT. I have learned that I'm tired on chemo day, then really good the next day and then I have a headache and nausea on the third day. Then I'm fine until I get another treatment. As long as I take tylenol and my nausea pills, I get through that third day pretty well. The nurses told me that my hair probably won't fall out this time either. I haven't noticed any hair thining or falling out so far. All in all, I would say this is easier than the ACT chemo. I also saw a genetic counselor and I don't have any cancer risk on the maternal side but possible on the fraternal side. I have to do some more research on the fraternal side and then she will check to see whether I need to do the Braca test. I'll be sending you positive thoughts.
Mrsnjband - Thanks so much for the prayers. They're alway needed and appreciated. Hope things are going well for you.
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Lindaa, I am sorry you chemo didn't work for you. I am hoping & praying the new drug will do the trick & kill the buzzards. Sending you all my love & support! NJ
Danni1, sending you love, support & prayers. NJ
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Hi NJ,
It's good to hear from you. I hope you are doing well as is everyone else. My second go round of chemo with gemcitabine, carboplatin and Iniparib didn't work. In the middle of finding that out, I found I have a lympn node with cancer pressing on my bile duct. It was really messing up my digestion and they pulled me off of all chemo and inserted a stent in my bile duct to hold it open. The surgery was tougher than the double mastectomy. I am finally mostly recovered and they put me back on chemo. I am taking xeloda pills twice a day and then will go in every 21 days for an infusion of taxane. Hope this works out. Let me know how everyone is doing now.
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Hi All,
Just thought I would update you on my status. They pulled me off the xeloda and taxane. I got terrible mouth sores and my white blood cells went to .5. I was in the hospital for a week. The oncologist met with me yesterday and told me that he gives me 2 to 4 months without chemo and he thought the xeloda was too much for my system to continue. I was so sick in the hospital that I can't go through that again. I don't even remember much of the week. So I've stopped chemo and will concentrate on getting my strength back and healing my system. I choose quality over quantity at this point. I plan on beating the oncologists odds anyway. Has anyone gotten good results from xeloda? Hope you all are doing well.
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Oh Dani, I am so sorry to hear that you are off of all chemo. It just breaks my heart to hear that.
Keep us posted on how your are doing. Sending love & prayers your way! NJ
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NJ,
Thanks for the love and prayers. I'm ready to get healthy and enjoy the summer. I'll keep you updated as to how I'm doing.
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I was just diagnosed with triple negative breast cancer last week. My partner and I had a baby girl 6 weeks ago. We are having a very difficult time with this news. Surgery is planned in 2 weeks then chemotherapy We are waiting on BrCa results.
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Mlieber214,
Congrats on having a daughter. Just holding her will help you through this. I'm sorry to hear that you were just diagnosed. This is a going to be a difficult road but you can do it. I had chemo before my surgery but that is the standard for IBC which it sounds like you don't have. The BrCa results will be very important in your treatment options. I had a double mastectomy and it wasn't that bad. I did the Susan G. Komen walk 2 weeks later. Check on this website and see if they have a thread for people that are having surgery soon. They will have lots of good advice about how to prepare. If there isn't a thread, start one like I did. It's a big comfort.
I have been through several different chemos so let me know if you have any concerns about whatever they put you on when you get to that part. The main thing in all this is the support of family, friends and most importantly, your partner. Good luck to you.
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Mlieber214,
Congrats on the new little one. If I am understanding you correctly you just have triple-negative breast cancer. IBC is inflammatory breast cancer and many women have the triple-neg along with the IBC. There are threads here that deal more specifically with triple-neg so you might want to check them out. Another teacher at my school has triple-neg, what are the odds of that? Hang in there you can do it. Just take it one day at a time. NJ
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