Are you out there?

By dawnjxn Wednesday, March 04, 2009

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I am a white, 56 year old, female with IBC, stage III B, node positive, up to 5, and triple negative. I just finished 3 rounds of FEC that I started in January when I was diagnosed.

I will start taxotere next with something else, but not sure what, yet.

If you have been there with this, please advise what you did and what has helped you. I'm unsure of supplements. I still take my calcium with D, but I stopped regular vitamins and everything else. Are flaxseed oil supplements good for you now?

It is hard to find someone to help, so if you are in my same shoes, I could really use you.

Thanks so much, whoever you are.

Comments (7) | Add comment

sue dyer

3/ 4/09 5:21pm

Hi. I share some of your cancer characteristics, except for being Her2+. I am currently doing weekly Taxol combined with Herceptin. You could ask your doctor about doing your next chemo weekly if you can manage the inconvenience of weekly visits to the clinic. The results are the same, maybe even marginally better, and the side effects are MUCH less. I hardly know that I'm on chemo at the moment apart from a little heartburn and some mild diarrhoea. My hair, which started to come back towards the end of my 4 AC cycles before surgery, is still growing, much to my delight. I am also taking vitamin B6 to lessen the severity of neuropathy towards the end of this treatment. My oncologist says it's unlikely to do any good, but many women on the web report gaining some benefit from it.

Best of luck with your treatment.

Sue

Phyllis Johnson, Health Guide

3/ 4/09 6:59pm

I'm coming up on my 11th anniversary as an IBC survivor. You'll want to talk to your oncologist about supplements. The issue of estrogen-rich supplements, like flaxseed, is controversial, but my oncologist didn't want me taking them even though I was also ER neg. While you are in treatment, some vitamins can reduce the effectiveness of your chemo, so talk about that with your doctor as well. Since most IBC patients have chemo, surgery, and radiation, treatment takes a long time to get through. But hang in there, you can get through this. Many people find the Taxotere easier to tolerate than the first set of chemo's, so I hope you have a similar experience. Two good resources for information specific to IBC are www.ibcsupport.org and www.ibcresearch.org. Sue Dyer and I have both written shareposts on this site about IBC issues, so you may want to read back through some of our posts.

Roger

3/ 5/09 7:22am

Hi, my wife had tripel negative BC. I am not a DR but I would recommend you get a 2nd opinion at a major cancer center, Memorial Sloan, MD, Mayo as they are pretty current on Triple negative protocols. I know Mayo, for example has found the platinum drugs, Carboplatin combined with Taxol to be quite effective and well tolerated. Taxotere's side effects are more harsh than taxol's.

I would ask very detail questions as to why any given protocol is being used. Ask about Ixempra, radiation for nodes (for example) and Clinical Trials as well.

As to the flax seed, I really don't know, but I would tink that estrogen rich foods would not be an issue with triple negative.

I will be happy to do whatever I can to help you.

Roger

Christine

4/ 4/09 8:00pm

I just saw your post and I hope it's not too late to respond.

I was diagnosed with IBC, stage lllb, triple negative, 5 positive nodes last August. I was 38. I am now going through radiation and with only 8 treatments left, I'm looking forward to it being over. However, I am doing really well.

My chemo consisted of 4 cycles of adriamycin & cytoxan, then 4 cycles of taxol. I only actually had 3 cycles of taxol due to side effects-numbing of my hands and feet. My "tumor" shrunk with each chemo visit and by the time of my surgery it had shrunk to 2cm.

I did really well on chemo. Minimal side effects (except for taxol). I took vit c, vit e, calcium, vit d. I also took, without fail every morning, whey protein powder in water.

This is a tough road but you will get through it. I will say that being positive is so very important. If I can help in any way please let me know. You are not alone!!!

With blessings,

Christine

12/15/09 1:58pm

I finished radiation on 9/11. During my mastectomy, my surgeon removed 21 lymph nodes and 17 were positive. I am taking each day and trying to be positive that the cancer is GONE! I will have CT scans on 12/21 and see my oncologist in Jan. I pray the news will be GREAT! It will be a year then that I was diagnosed with this awful disease.

I am working on losing weight, but I have to do better. I am exercising in a pool and that is helping some. How are you doing now? I stay very tired, but keep going.

carmen

3/ 8/10 8:16pm

I started my first chemo last week with taxotere. I can really tell you it has not been bad at all, well it was the first one, and I hope they continue the same. Be positive, think that you are going to feel well, the mind is powerful........ My first chemo I felt very bad and then I realized it wast not that bad. If I could be of an help please write to me.

PJ Hamel, Health Guide

3/ 8/10 9:32pm

Hi Carmen - Thanks for checking in here - hope things continue to go well for you. PJH

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