It’s really so hard to discover whether the symptoms are side effects or signs of something new
I started ribociclib and fulvestrant a little over a month ago, and had my first denosumab injection 1 week ago (they couldn’t give me on cycle 1 because I hadn’t had a dental check-up in the last 6 months…). Since last week I’m exhausted all the time. I do try to continue living my life, ignore it, but any little thing I do leaves me so tired.
I wonder if it will be like this for the rest of my life, if the side effects are cumulative (please, NO!)
It’s like a domino effect: main treatment has side effects, then they give us tablets for those effects, which in turn have other effects…
(sorry - having a very bad day today, despite having the day off work)
I really feel your pain on this one, relating to side effects and symptoms. It’s so hard dealing with the bad days.
I don’t know what your colleagues are like but I find when my colleagues are off sick they know they’ll get better, and they might go on about colds etc but we have a whole list of symptoms to deal with as well as the fatigue and aches and pains.
I’ve just had Covid on top of all the side effects and I feel broken.
Yes, exactly! My counsellor was telling me “remember you had fatigue before”, but that was linked to the chemo so even if it lasted months, there was an end point.
I’m happy to say that in the last week things got a bit better (maybe it’s a rhythm within the monthly cycle?) and I realised that walking with my hiking poles helps a lot - I guess the effort is distributed by the entire body, arms included, instead of just the legs.
I wanted to share some positive news, ive recently posted on this thread awhile back.
I received my results from last CT scan, my cancer blood markers have come down from 329 in feb too 62.
Im still experiencing the odd bone pain flare up in the spine, fatigue, D etc but the way im looking at it at the moment as small price to pay for a good result. Im on ambeciclib, fulvestrant and denosumb, now almost 10 months, apparently you have ct scans every 3 months to start, my next one is nov. Results on anniversary of diagnoses of all times in dec. Just keeping fingers crossed cancer shows no further growth and cancer marker remains the same.
Remain strong ladies, sending positive vibes to you all
So sorry you had to experience such a shock. I hope you are on a positive pathway for treatment now.
Hope it’s ok to ask a question? I had a bone scan today to scrutinise ‘bone islands’ in my spine and pelvis that were identified on Cat scan. My initial lump in my breast has not been operated on (yet) - pending results of bone scan. I wondered if you had to undergo a bone biopsy to be sure any ‘hot spots’ on the bone scan were metastatis or could relate to other issues such as osteoarthritis or just degenerative process.?
If this is a ‘trigerring’ questions please forgive and ignore. Would hate to cause more anxiety.
Please take good care of yourself - sending best wishes.
Hi.
Another boney person here. Been on Abemaciclib, Letrozole and Denosumab for 3 years but now about to go onto Capecitabine. Any success stories? I also have gene variant that tends not to process Cape well so feeling a little anxious.
Hi Mindy63 sorry I can’t help you with your question but just wanted to ask how you have got on with the 3 that you have taken over the last 3 years, I was diagnosed inJuly and I am on the same drugs I have my mets in my spine. I am due a scan tomorrow and I am so anxious that it may have spread
Hope you cope well on the cape xx
I have bone mets in my spine, ribs and hip. I was diagnosed in July but had to wait until the end of August for confirmation from the biopsy I had. Today I had my 3rd cycle of Fulvestrant and also a Denosumab injection. I’m on 3 ribociclib tablets a day at the moment. It is still early days and I’ve been told i will have scans in January to assess progress and see if there are any further mets that have not yet been identified. It is scary but today I chatted with another lady who has been on the treatment for 9 years which gave me some hope.
Hi Susans23 I started with a really bad back and shoulder pain and that’s how I discovered I had breast cancer with mets in my spine it was a massive shock !! I am on Denosumab, Abemaciclib and Letrozole, my last scan came back as stable with slight shrinkage on the spine which was so good to hear but I have another scan today and have had a bit of backache this last week so a bit anxious.
It is early days for us and still scary but it is so comforting to hear of people who are doing well after many years, this forum is such a comfort hearing of people’s positive stories
