Breast Cancer

[TheaHardy]

I looked at the chemo topic here but no activity since 2005. I have breast cancer on a second side with a large ductal carcinoma complicated by Paget's cancer of the nipple and inflammatory breast cancer I refused chemo for the other side which did fine with a lumpectomy. But this is different. So now I have to deal with chemo and have had no real support from others who have gone through it. There is no other solution for my situation - the inflammatory problem must be shrunk down before I can have a mastectomy.

I am scared of the chemo and looking for help in getting through it, plus information on what supplements can help with side effects and effectiveness, and which ones are a problem. I know that depends on which chemotherapy agent is used.

Mostly I need help understanding what it's like to go through this and survive. I have a lot of health problems including diabetes fibromyalgia, etc., and am concerned about how to maintain quality of life during the upcoming ordeal. I would really appreciate some hand-holding. I have spent a life time holding the hands of others and asking for help isn't easy, but here I am! :-)

[UroDoc]

Sorry to hear about your predicament. As you noted we closed these forums in 2005 and just reopened them a few months ago. Chemo can be very tough but you have to believe you will get better, a positive attitude can really make a difference. Focus on what is important to you and what you want to do in the future. Good luck.

[Catherine]

Hi TheaHardy. I am very sorry to hear about what you are going through. Just about one year ago, I began chemotherapy for stage 2 ductal carcinoma following lumpectomy and axillary lymph node disection. My situation was quite a bit different because I didn't have any other existing illnesses, but one thing I can relate to is your fear of chemo. Going through diagnosis and the 2 surgeries was pretty difficult, but when I learned I needed chemo, it was almost too much. I was petrified of that treatment. I could talk to you about my experience, but one thing I know is that every person responds to chemotherapy differently. And, you are right, the combination of drugs used affects the whole situation. Cancer treatment is hard to go through but if you listen to and are gentle with your body during it, it definitely can be managed. If you want to talk at all, please write back. I will check here often. Know that you are in my prayers.

[TheaHardy]

Thank you, Catherine - it helps to just hear from someone at this stage. I will keep in touch!!

Thea

[Catherine]

Sounds good. Asking for even a little bit of help can be one of the hardest things to do. I still feel very much alone in what I have gone through, even though I have a very caring and loving family and a lot of wonderful friends and know that millions of people have gone through much worse. So, I will just try to respond to whatever you want to say here in this forum in the most honest way I can. Best to you. Catherine

[TheaHardy]

Thanks very much for your words of support. If I had less co-morbidities, I would be a little less daunted. I worry about dehydration from vomiting with my diabetes, plus nerve damage. My energy has been low and I have been in a lot of pain for years with chronic fatigue and fibromyalgia. My first oncologist said he felt the dose-dense chemo would probably kill me, but he still recommended it. That's when I stopped and did a lot of research. For that ductal carcinoma w/o lymph node involvement, research later showed that chemo for hormone positive cancers in post-menopausal women was not effective, so I escaped that one and the lumpectomy seemed to do fine. But the second one, which they first feared was from spreading but later considered concurrent, turned into the inflammatory cancer, which has to be shrunk down with chemo for them to operate. Since the tumor itself is quite large - I am betting up to 7 cm by now - I have to do something.

I think the most important thing I can do from my side is that positive attitude you recommend. I am fortunate there - while the chemo scares me, I have been able to do a good job of fear management - I sleep most nights, and don't have frequent debilitating fear. But now I have to deal with a new set of fears, and yes, that attitude is going to be my most important ally from a personal standpoint.

Again, thanks for the support.

Sorry to hear about your predicament. As you noted we closed these forums in 2005 and just reopened them a few months ago. Chemo can be very tough but you have to believe you will get better, a positive attitude can really make a difference. Focus on what is important to you and what you want to do in the future. Good luck.

[TheaHardy]

Yes, asking for help is hard when you are the one who is usually helping folks! Time to take time for me, I guess. My first cancer ended up responding well to the lumpectomy. But this one is different.

Could you tell me which chemotherapy agents you had to take and if some were worse than others? One thing I have found about being isolated is that I have lost several friends, longtime ones, who could not take the pain of possibly losing me. I had heard of such things but would not believe them if it had not happened to me. It's really quite grotesque. But I guess you learn who your friends are. I have a few who come through fairly well, but my family is scattered or gone. I just found my birth mother in March and she and my half-siblings are supportive, but I am in Oregon and they are in Indiana. I did learn that I have BC in my family - Mom had it years ago, but both my grandmother and great-grandmother died of it. I don't intend to!

I agree that millions have gone through worse. Even having three cancers on one breast and matted lymph nodes is not as bad as it gets. My scans a year ago were clean except for this (the inflammatory was not yet present), and if I am lucky the things I do to prevent metastasis are working. NIH has a lot of great research they are doing on cancer. We find out more every day.

I am getting my house streamlined and set up better for managing things - my boyfriend and other friends will take turns doing things for me when the going is most rough. Getting things set up in advance seems smart. And feels like I am doing something positive for myself. I am hoping to baby myself the best I can during the tough months. And let myself be spoiled.

Life brings challenges, but in the end, I have found that difficulties are always opportunities for growth. So I better get growing!!

Thanks again.

Sounds good. Asking for even a little bit of help can be one of the hardest things to do. I still feel very much alone in what I have gone through, even though I have a very caring and loving family and a lot of wonderful friends and know that millions of people have gone through much worse. So, I will just try to respond to whatever you want to say here in this forum in the most honest way I can. Best to you. Catherine

[Catherine]

Hi Thea, It sounds like you have an absolutely amazing attitude to me! I am sorry to hear about the choice that some of your friends made and I really hope that your friends and whatever family you have available really comes through for you.

I can tell you about my chemo regimen. I was part of a clinical trial and had Adriamycin, Cytoxan, Taxol, and Gemzar. The first two, once every two weeks for 8 weeks, then the second two, once every two weeks for 8 weeks. Anti-nausea medicines that I was given were Aloxi, Decadron, and Emend. I also received a Neulasta injection the day after every treatment. Nausea was pretty well controlled and the major side effects I experienced were hair loss, insomnia, loss of appetite (tastes really changed), mood swings, and numbness and tingling in my hands and feet. My blood counts were a little bit low just one time, and not low enough to prevent treatment. I received chemo for 3-5 hours (first set of drugs took 3 hours to administer and the second set took about 5) through an implanted port in my chest.

You sound like you have a really good handle on things. Talk to you later.

[TheaHardy]

Oh, gee, I wish I did have a handle on things, Catherine. I have to work hard on my attitude. It didn't just happen, I can tell you. But I know fear is not good for me, and I have to keep on it. The side effects of the chemo are what scare me most because of my diabetes and stuff. But your post about the specifics really was helpful. I had heard that some of the drugs they give to help with side effects really do their job. Hearing about your blood levels was encouraging. I don't know what protocol they have in mind for me yet, but will report in when I do. Would you say the Adriamycin group was easier on you than the Taxol group? I have heard folks say that the Taxol was pretty rough.

Thanks SO much for your support - it helps!

[Catherine]

I guess what I meant to say is that you sound like you are doing all the right things. I don't think it's possible to have a handle on things all the time when you are going through something like this. And, that's okay. For example, it's natural to be afraid, but you know that for you, it isn't good to let your fears take over.

I looked back through the binder I kept when I was going through chemotherapy and I have to admit that, yes, the Taxol was a little bit more difficult. I had what I considered my two worst days ever after two of those treatments, but feeling really poorly didn't last very long. I forgot to mention that I had some bone pain from the Neulasta too. From what I was told, as the chemo damages healthy blood cell formation in the bone marrow, the Neulasta fights against that to maintain your blood counts and that can cause pain.

I haven't talked to anyone about all this in a very long time, so talking with you is actually helping me too! I will continue to hope for the very best for you, and will pray that you have wonderful care.