Which Chemo/chemos were you on for IBC?

3bells

I am finishing AC course (4) on Monday and was supposed to go on taxol. Since it isn't available where I am being treated, I'll be insisting that my Onc tell me what she would use as an alternative. (She was vague the last time I saw her.)



I know that taxol isn't always successful with IBC and am wondering what other's were treated with so I have more information when I see her. I have had no luck in web searches; maybe because IBC is rare.



To make this more anxiety provoking, my doctor thinks there is some chance I have IBC, but isn't sure, otherwise I would have had a mastectomy because I do have invasive lobular BC. I am seriously considering taking the risk and asking for the mastectomy rather than take the risk of permanent neuropathy. I am already semi handicapped and have some neuropathy. I read that being over 65 increases the risk. So I am in the position of risking a lifetime in a wheelchair because of a "possibility" of IBC, or taking a chance and choosing to be treated with surgery.



It would very much help if I could hear of other's experiences with chemo treatments that are available.



My heart felt thanks for any responses!

ibcmets

3bells,

If you indeed have IBC, you need to do chemo first.  I did not have my surgery until a year after chemo.  My onc wanted to make sure I was stable b/4 MX.  Some have surgery sooner, but I was stage IV, but definitely not before doing chemo.

I had 8 months of, once every 3 weeks of cytoxin, taxotere & 4 doses of adriamyacin.  I'm ER/PR+, her2-.  This may make a difference in what chemo you get.  I had no pain from chemo, just exhaustion & bloody noses & watering eyes.  Chemo can cause more neuropathy, so I took B6 & B12 vitamins, which helped a lot with this.  Best wishes on your treatment.

 Terri

Faith316

I had Adriamycin, Cytoxin, Taxol and Herceptin and radiation for my first BC dx of IDC, none of which worked.  While still on Herceptin and in the midst of radiation, I got my second dx -- this time IBC.  They switched me to Xeloda and Tykerb and that did the trick for me!

Laura_Jean

I also had surgery after 6 months of chemo.

I had 12 weeks of  Taxol followed by 4 cycles of FEC. Those rounds of chemo took the cancer out of my skin and allowed us to get clean margins during surgery. However, there was still lymph node involvement so I'm currently on Xeloda along with radiation. 

I did not have a lot of adverse effects from the Taxol, for me it was much easier than the FEC. That said, of course, everyone's experience with chemo is different. 

Laura Jean 

ebann

I was dx w/ IBC in 2008.   The chemo's I did first were 4 rounds of Taxotere and Cisplatin every 3 weeks. Then I started 4 more rounds of Admiradcyin and Cytoxin every 2 weeks. Had surgery 7 months later and had my mx. It is important to get that tumor to shrink before surgery. My tumor was 12cm. It was in 3 of my lymph nodes and chest wall so then I did Taxol and Carboplatin every week for 3 weeks then 1 week off. In 2009 I was declared cancer free. I was very glad my Dr. was aggressive in treating IBC.  Taxol was not as hard on me as the others were. I did lose my hair from the beginning of treatment. With Taxol I got neuropathy (tingling feet/hands), watery eyes, Big D, nausea, stomach aches, discoloring of fingernail, toenails and them lifting. Laura Jean is correct everyone handles SE's differently. You may be fine and not hardly have any. If you are unsure about your Dr. decision then I would get a 2nd opinion. You need to feel good about your medical team that is taking care of you.

3bells

Thank you for sharing your experiences. The hard thing about this is that the symptoms are so vague. A pinkness around the breast and the skin a bit - tough, rough? Inverted nipple, but since that is where the Lobular BC covers, it could easily be the cause.

My doctor said the pinkness (I had a hard time seeing it myself) and skin condition could be due to radiation 12 years ago. They (the team of doctors) gave me the choice, but said they would rather err on the side of caution.

 My breast surgeon is wonderful, the kind of doctor who goes all out for her patients. She's a straight shooter and I trust her. She would be happy to refer me for a second opinion, but since she thinks the "pinkness has faded somewhat from the AC" it would be more difficult for another doctor and another opinion would be the same. The main reason I would seek one is if they had taxol available. I know some are still getting it.

 If I weren't so afraid ending in a wheelchair due to neuropathy it wouldn't be so difficult. Then the fact that I'll be getting a taxol substitute adds to the stress. I am tempted to tell them to do the surgery and take the chance that it isn't IBC. Maybe by the time I recovered from the mastectomy, there would be some taxol available (which I need for the Lobular BC. Scary decision!

Again thank you!

Peggy

Anonymous

3bells, have a biopsy first, to be really sure it isn't IBC. I was just diagnosed this past week. The symptoms on my breast were very slight, but I had the rare situation of heavy neck involvement. That had been Dx as skin mets from my original TBNC, but biopsy of neck and breast confirmed IBC. Be safe, and try to establish the bottom line before making a final decision.



Best wines to you.

3bells

TNBC, thank you for the response. I did have a skin biopsy the same day I had the core biopsy to confirm the lobular BC. The report was negative, but the doctor said false negatives were possible. She was concerned about missing it so took it before the group of doctors who help with advice. They all thought it was best to treat it as though it were IBC, just to be safe. I took the advice and am finished finally with AC and started taxol yesterday.

Sometimes I second guess myself and wish I'd said to take the chance and have surgery because with chemo everything is so iffy. When I asked her yesterday, If the taxol doesn't work with the Lobular BC, the onc said she would probably recommend that we go on to surgery. My surgeon is periodically checking me and thinks maybe the pinkness is fading, but that's just mostly a guess

. Personally I don't think I had IBC - just a gut instinct. There really isn't any way they can tell if the chemo worked on it since the symptoms were so vague, but if I did and the chemo wasn't working, it would be much worse by now since it is aggressive. I'm more concerned about the delay in getting the mass out of my body before it gets much worse or spreads. But I have left the whole thing in the Lord's hands and mostly I have peace about it. Since I am a Christian believer, I really can't lose. Longer life on this earth, or going to eternal joy!

I pray that your treatment goes well and you have many more years ahead of you! There are many survival stories to inspire!

Laura_Jean

I do think you've made the right decision to continue with the chemo. If the tumor can shrink before surgery then you are more likely to get clean margins, and your tumor is/was fairly large. If it is IBC then chemo before surgery, and usually with one of the taxols plus an AC or FEC is the protocol. Even if it is not IBC you still have a better chance of getting it to shrink before surgery. I hope that things are going well for you, and that the side effects are tolerable.

 Best,

Laura

mrsnjband

I had 4 dd A/C and then I had 8 Taxol.  Started getting neuropathy bad in hands & feet so I was switched to Taxotere had 3.5 doses.  Taxotere just made the neuropathy worse, made me dizzy, nauseous & gave me pain 24/7.  I still have neuropathy in my hands and feet but they aren't as bad as they were during treatment.  I take neurotin which really helps.  While I do have side effects I believe the chemo did it's job as I am almost 4 years out from my first symptoms of IBC-TN.  NJ 

3bells

Hi Laura. I had two good days and the evening of the third muscle pain began. It's not as bad today. Will have to tough that out since it's likely to get worse. The hardest part so far is that what little appetite I had is gone. Have to force myself to eat. I lost weight on AC and was surprised that I'm up a bit today but that could be the bigger dose of steroid maybe.



Norma June, it's good to know that the neuropathy isn't as bad now for you. I've heard things about taxotere that I think would cause me to refuse it. I was going to be on abraxane but the clinic got more taxol in stock. Mixed feelings about that because research indicated side effects were easier with abraxane, except for neuropathy which was worse for the first three levels. That's not true for everyone, I know. Everyone is so different.



My oncologist said that if the taxol doesn't work we would probably move to surgery. I'm not sure how long I would have to wait between.



Anyhow I'll just take it a day at a time. Thank you both for your messages.

Laura_Jean

Are you on Neulasta? that can also cause muscle pain; Claritin helped me avoid that.

Laura Jean 

3bells

I took Claritin when on AC and Nuelasta and had mild muscle/joint pain for a day or two from the first injection only. But my Onc doesn't give Neulasta for once a week taxol.

 My platelets were down to 99 yesterday. The nurse contacted the Onc since the cut off line for getting chemo is 100. It was close enough that she let me go ahead. I don't think there's anything I can do to change the platelet count. Low counts almost stopped me from having the first treatment but they were back up before the first taxol treatment. I stopped supplementing with Fish Oil that time because it can thin blood, but none of the supplements I'm taking to hopefully minimize neuropathy have blood thinning mentioned as a side effect.

I probably need to do a site search and maybe I can find out more about the low platelet count problem.

Thanks again, Laura Jean!