I'm recently diagnosed with metastatic breast cancer of the bone. My first go round was 2013 -I had a right mastectomy (18-21 nodes removed) and T + C chemo. Stacked DIEP flap reconstruction. I couldn't tolerate hormonal therapy then so I just did chemo.
Bone mets appeared last April-big tumor in my right femur. Smaller one on the left. I've just had stabilization surgery and start Radiation on the big tumor soon. I also started taking letrosole. We'll see how it goes. They want to add in in Ibrance but I am really averse to it and scared. Also trying to to figure out how to get back into work. I was working in a high stress ad agency doing software design in NYC. I'm out of leave now--Trying to figure out what to do. I'm so tired already...I'm 50. Trying to find a support group in NYC. I feel a little deflated. Thanks for letting me post this. Take care!
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Rainbobaggins
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I take Ibrance and Letrozole and the side effects are manageable. Fatigue is my biggest issue. My 3 month scan showed favourable changes. I am 54 and I had no previous breast cancer until my hip became so bad I couldn’t walk. Mri and further scans showed meta throughout my bones, stage 4. Then they searched and found a small spot in my breast. Ibrance is worth a try, in my opinion and if your doctors recommend it then go for it.
Thanks! I will consider it. I'm worried about having to work and having energy and being a lot of people..some of whom come to work when they're sick, etc.
I'm sorry that you are having to deal with this lousy cancer plus a high stress job! But you definitely have some things going for you in this odd world of mbc! Being older and likely past menopause, having an estrogen receptor positive cancer and bone mets only are all likely to give you an advantage in terms of both longevity and quality of life. I was 57 when initially diagnosed with breast cancer and had bone mets from the get go, plus a nice lazy E + cancer. It was March, 2004 that I was diagnosed and the bone mets found. I got almost five years from Letrozole, along with Zometa for my bones. Then I got over nine years from Faslodex. When Xgeva was approved for bone mets, we switched me to that, as I am allergic to Zometa. I'm now 72, and when I am out and about, people never guess that I have an advanced cancer or that I am as old as I am! Looking younger than I am was not an asset when I was 21, but now it sure is, lol! About finding a support group--call Share, a cancer support organization in NYC that focuses on women with breast cancer and women with ovarian cancer. They have in person support groups and a telephone helpline. And they know alot about other resources esp in NY! About work--if you have worked enough quarters and paid into Social Security, with this diagnosis, we do qualify for Social Security Disability Income (SSDI, SSD) with a five month waiting period from the time we stop working. And then twenty four months after that, for Medicare. Since you work in software, I would assume that you know about about IT -- if you want to continue working, you might be able to find something alot less stressful, maybe even working for a cancer related group or some other private non profit. My mother was a very skilled secretary and spent most of her career working for those, including the Red Cross, an adoption agency, and the Heart Association. She probably could have earned more elsewhere but she liked knowing her work helped other people in very meaningful ways. For me, the three things that made a huge difference in helping me move from the initial anxiety of getting this diagnosis were getting good reports that treatment was working, meeting other women with mbc at a bc retreat, and finding an on line support group for MBC. It does take time, but finding out that the cancer is shrinking sure helps! And connecting with others and not feeling so alone sure makes a difference, too. Welcome and I hope you will do as well as I have!
I have been on ibrance and faslodex for a little over two years. It is very tolerable. The dose can be lowered if needed. If it is suggested to u, try it. I also had a recurrence to the T2 area of the bone. It is exhausting going through this but just keep going! Welcome to the group dnd be well.
I just started ibrance and falsodex and so far so good. I've been reading lots of other posts and most of those posting seem to do OK, some do well, on ibrance. I feel a little uncomfortable since I'm new too offering advice but I'd go for it and see what happens. You can always stop taking ibrance. And, incidentally, I was on letrozole for three years and it didn't prevent my metastasis.
Have you read Radical Remission or Breast Cancer 50 Essentials Things You Can Do? I recommend both.
May you find strength, healing and hope on this difficult journey.
God bless you for reaching out to fellow MBC patients!
My only "suggestion" is that you do not discount the use of Ibrance. It does have a few side effects (thinning hair being one) but this appears to be a very powerful combination in the battle with MBC.
I was 17 years cancer free (or so I thought) after first breast cancer diagnosis in 2000. Following double mastectomy, despite no lymph node involvement, I thought I was home free. Everything was good until November of this past year when it reappeared in a lymph node in my right armpit and further testing showed it had spread to my spine. I had radiation to spine followed by the letrozole/Ibrance combo and am currently NED (no evidence of disease).
It is, of course, not a cure; but it provides hope that this treatment will be effective for a long time before you have to consider a new one. I'm guessing that you are (or will be) receiving a monthly injection of Xgeva or another similar bone strengthening medicine. I do still have occasional back aches (treatable with Tylenol) and more lethargy than I'm used to. Keep up hope! God bless you! XXOO
I am so sorry that you were going through this. We all know how difficult it is. Living with cancer is a roller coaster and every day can be a different answer to your question is a slightly different diagnosis and thankfully a new treatment. I pray that you have a good support System with family and friends. Although, that is tremendous help, we are still on this journey alone and times that is really tough. Having our warrior sisters, as someone on this site called us, I have found to be tremendously positive and the best support group that I could conceivably find from my personality. I did not want to be part of a support group for people felt sorry for themselves or were so sick that it was an effort to get there. I know that’s selfish on my part but I need to stay in a positive place as much as I can. I know you ladies know how difficult that can be. I am a 21 year survivor of metastatic breast cancer. For 10 years, I took new meds at all until my cancer returned in the fall. It was so small with nose in my lung , That it took them two
Months to diagnose my current spread.
I’ve taken femera( letrizole) all for five years 15 years ago so that didn’t really concern me. At the time I was in my 50s, And the hot flashes drove me crazy. I was happy to be off when the time came. Now I am 68, and I’m back on letrizole , had it really doesn’t bother me.
Now for Ibrance that’s a whole different drug. I’m hoping a successful drug to help me drive his cancer into remission once again. But I must say, that I do a whole array of other support of things along with my medication. I Often feel the alternative things are more helpful but the truth is who knows. I, as you, Was scared to death to take I Brandts. Honestly think I was more afraid Ibrance than I was cancer. I don’t like what it does to my bone marrow and my baby cellsand production, but I want to live and I Believe that it kills cancer cells, so I take it. There were times in your cycle, at least my experience, that I feel normal and my energy level is fine. That could be because I’ve only been on for four months and usually to continue attack make sure little more tired as time goes on . But our other sisters, as I have said, state that if that’s the worst scenario we can live with us. I still battle being ticked off that I get tired at any point of the day! I guess it’s kind of selfish of me 68 years old but I’m used to having more energy than most People half my age
. I would suggest Looking into tapping, imagery, and doing some YouTube Breathing videos to begin to learn how to do deep breathing. That’s the one I find to be the most difficult believe it or not none of us breathe properly, who knew! Ha ha!
Anyway, once I started the drug and got through my first two months, I realize drug wasn’t gonna kill me quite that quickly as maybe the cancer would! You need to drink tons of water every day close to a gallon. That’s even in the Pfizer info. Also I take the medication the first part of the day after eating a good amount of food and I’ve never had any problem with stomach upset or nausea from the medication, nor do I have any problems with diarrhea. I take letrizole Always on an empty stomach right before I go to bed as it can make you drowsy and is the lectures all makes you tired why would you want to add to it. Then I’m going to bed anyway so tired to good thing.
The positive support, yet real, that we get from each other on this site has been a godsend to me, just what I was looking for.
Most importantly, always keep in your mind at all times, People go into remission EVERY day , From all stages of cancer, even stage 4. So there is absolutely no reason that one of those people can’t be you. Keep up the research feel tired of practices, for me that and also includes diet change, And survive and be happy. Any questions you have along the way throw it out here to the other sisters and we’re all here in support of each other!
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