Hi. I have been reading some posts but this is my first post. I was diagnosed with stage 4 breast cancer earlier this year, 24 years after my original diagnosis. I am 72 and have mets in my sternum, a rib and chest wall and am taking Palbociclib, Letrazole and monthly injections of Denosumab. On the whole, I am coping well with the treatment. I have been heartened by people here saying they have been on treatment for some years. It is difficult to know what ailments are from the treatment. I have had two infections and about 6 weeks of dizziness which has now stopped. I still feel low on some days but ok on others and would love to connect with others in the same situation.
I’m on exactly the same treatment as you and have just started my 25th round. Just recently my nutrafils have been too low so they have delayed my Palbociclib by a week. But I have been told this is nothing to worry about it’s just my body’s way of dealing with the drugs now I’ve been on them just over 2 years.
My main side effects are aching joints and sometimes a bloated stomach but other than that pretty good.
Wishing you all the best with your treatment xx
sorry to hear it. So far I haven’t had a secondary breast cancer diagnosis. I first had breast cancer in 2003, 19 years later I have it in the same breast as last time, so had a mastectomy and am on letrozole and six monthly infusions of zoledronic acid which is meant to make my bones less likely to get cancer in them. I am not planning for a long life as I have relatives who made it to 100 but mostly they were more and more disabled the longer they lasted. So I don’t want to live to over 80
I would like to live long enough to see all my grandchildren grow up, but may be unrealistic. Hopefully, the zoledronic acid will prevent the cancer going into your bones as the denosumab has reduced the activity in my sternum. I hoped they would be able to operate this time and remove the growths but that was impossible, so treatment for as long as it works now. Thanks for replying and good luck.
Thank you. I am just finishing my 6th round. The Palbociclib was reduced in June to just 75mg as it caused diverticulitis which hospitalised me - ok now. I have a bloated stomach as well most of the time and my fingers are painful, but that might be arthritis rather than the drugs. Good luck with your treatment and thanks for replying. xx
I don’t have any children or grand children to see grow up so that’s good in one way, no pressure to hang around. It’s frustrating that you can’t have surgery but it’s not very nice having surgery either. If only the doctors could control and shrink all breast cancers but they haven’t proved that able so far. Surgery always filled me with fear once I had read a book which had a photo in it of a woman who had a mastectomy in the 1960s. In those days they removed the chest muscles too so she had a very concave area with no reconstruction of course. I don’t think reconstructions are great but of them, the diep is one of the best and that’s what I have.
That’s great about the reconstruction. I would hope that by removing the whole breast they might have done enough to prevent another recurrence. Fingers crossed for you. All I can do is take the drugs offered and hope that when they stop working there will be something else to keep me going. The oncologist reckoned 3-4 years would be good but I would like more than that. Can only hope and shouldn’t be greedy. I think I would have been offered radiotherapy as well but couldn’t have it this time as I had it the first time round (as well as surgery - quadrantectomy - and chemo).
Hello . I was diagnosed with stage 4 in April sadly only 2 years after primary - It’s in sacrum , some ribs and two or three vertebrae.
. I’m 75 and like you on treatment -I had sone radiotherapy on my sacrum and spine then started Fulvestrant injections and Ribociclib and three monthly Denosumab . Unfortunately my neutrophils went too low on both my tablet cycles Ive had so far so a break needed . This time Ive a two week break though they wanted only one week break .
However a big family gathering meant I pushed for an extra weeks break . Somehow not having that event messed by churning to hospital appointment seemed best for my overall well-being
I do ok on the treatment but always feel better not on it and less tired and odd in the head !
I will though persist and see what the first post treatment CT scan shows end/ early November .
I think it’s just learning to take one day at a time and enjoy the little things though my mood goes up and down over it all .
I asked to be referred to our local hospice and I go to a seated exercise class - great fun and soon will do other ‘activities’ there . I find it great to be with others who have life limiting conditions for chat , coffee and activities etc .
I do find daily short walks ( and for me that is always less than a mile in one go ) really important.
I hope your treatment continues well .
Thank you. And I wish you all the best with your treatment. My last scan did show some improvement and I have another one soon. Fingers crossed. It is always a worry. I did go to an exercise ‘class’ where I have treatment but the others were mostly much younger than me and on their treatment for a first cancer. I did not seem to cope as well as they did. I had a week’s break when I was in hospital after which the dose of Palbociclib was reduced. I am mostly ok but get tired with the slightest exertion and also have pains in my hands at the moment. I also try to do a short walk most days. My aim is to take whatever treatment is offered for as long as something works.
I am glad the denosumab is having a good effect on the cancer. How old are your grandchildren now? It must be lovely to have them. I decided not to have children when I was 16 with severe acne. It runs in families so I didn’t want to pass it on. Now I feel sad that I don’t have anyone except my husband, but maybe it’s a good thing given breast cancer diagnosis twice in my life so far. Not that it’s necessarily anything I could have passed on to anyone. I don’t have any breast cancer genes. Cheers Seagulls
My grandchildren range from 14 years down to 3 years. (6 altogether). I was told by my original surgeon that the cancer was not hereditary and later that it had been ok for so long that it wasn’t coming back. My eldest daughter is now hoping to have genetic tests to see if it is hereditary on the advice of my oncologist. I feel terrible that I might have passed something on to my children (3 girls) but there was no history of breast cancer in my family and I had had them all before I was diagnosed. I don’t know what tests were done with me originally as it was 24 years ago and I think I was in shock a lot of the time. Best wishes to you.