Hi ladies,
i have just started cycle 6 of the above for bone and liver mets and have had no significant side effects up until now. However, this time round I have had terrible aching in my joints, bloating and abdominal discomfort, as well as extreme tiredness. I’m really scared this may mean that the drugs have stopped working, although so far all my blood and liver function tests, calcium and iron have been steadily improving.
Has anyone else experienced these side effects on this combination? I’m thinking of pushing for a scan to see what’s going on…also, am feeling incredibly low as its our wedding anniversary today and we should have been in Brazil but I wasn’t allowed to go, and am worried that we may not get too any more wedding anniversaries together. I hate this damned illness, it’s mentally exhausting as much as its physical.
Any advice, reassurance, words of comfort would be appreciated.
Charlotte x x
Wish I could just give you a big hug Charlotte - you sound so down just now. I can so easily identify with how you feel - I used to beg them to let me off the last one of any of the cycles as I found the effects cumulative. But they always managed to persuade me to go on. Mind you most of those chemos were for primaries and I suspect the idea is to keep you on capecitabine long term. I did have capecitabine for 2ndaries but had to give up on that one after 2.5 cycles. It just didn’t agree with me. I do remember going through my 50th birthday on chemo, and a number of anniversaries on one treatment or another and thinking I would never make the next one. But having started with BC at 45 and now at 68 I can look back on a number of very special occasions that I never thought I would live to see - things like special birthdays, anniversaries, getting my pension LOL, seeing my children graduate (they were just 16 & 18 at my first dx and in the midst of O & A levels) Then seeing my daughter married, the birth of our first grandson, then the birth of twin grandchildren last. I do feel sad that now I can’t do much to help and probably won’t live to see them get much older but I tried to be so thankful for what I have had. The treatments have come on tremendously since my first diagnosis and there will be plenty of options for you.
Have you found the denosumab thread yet. I think there are quite a few on it now. I am on zometa currently, used to be on pamidronate for a few years before they switched me. I am sure I read of someone having bloated problems with denosumab.I certainly wouldn’t have thought the symptoms you describe as being a part of the drugs failing at all
I have just realised I started writing this some time ago and have just come back to turn my laptop off and found it!
Hope you are tucked up in bed by now and in the land of nod!
Dawn xx
Thank you Dawn, that’s just what I needed! And you sound like you are doing well, 23 years on after starting this nightmare…like you say, treatments are improving almost daily so there is hope. I just miss my old life sometimes.
xxxx
Morning! I tried Capecatabine and Denosumab combo (I too have bone and liver mets) I felt absolutley fine on it. BUT…after 3 cylcles my regular 3 monthly CT scan showed progression in my liver so I came off it. I am now on Eribulin and Denosumab combo and feel dreadful! I too feel bloated and feel like I have eaten a christmas dinner even after just eating half a sandwich! I was diagnosed with secondaries November 2011 and this is the first chemo/bone stregnthener combo with I have felt ill on… I thought it was the chemo but perhaps it is the Denosumab. I’ll ask my Onc on Wed. Do you have regular 3 monthly scans? If not, request them, they will give your team a good idea if you are responding to treatment. Good Luck!
hi horsie 5050, how are you i just read you post saying you are in eribulin i am starting this chemo tomorow along with the herceptin of course, how are you feeling on it and what are the side affects like if any. lorraine x
Hi Horsie5050
We are in a similar situation, I too was diagnosed with secondaries Nov 2011!!! Are you ER positive? I am but I’ve read that mets can be different to the primaries so that’s something for me to ask. This is my 6th cycle and I’ve not had a scan yet as bloods have steadily improved so Onc hasn’t felt the need, but I’m going to push for one now, I think 6 cycles is plenty, and I need to ‘see’ what’s going on…also requested tumour markers be checked again, and she’s agreed to this.
What a pickle!
Charlotte x x
Good Morning! Lollypop, lovely to hear from you again. sadly we have to pay for the Eribulin, where are you having it? I have it at home, bl**dy marvelous!!! A cuppa and a chat whilst they do it. I have found the worst thing about the Eribulin is wind!!! It may just be me, but be prepared…
Charlie - I am also ER+ and Her2 negative. You are right, tumours can havea a different receptor status, I had a liver biopsy done 4 weeks ago to to check - and nothing has changed. As for scans - my bloods have always been “normal” for everything, so as my Onc knows he can’t rely on my bloods for any indicators ( tumour markers average 15-19, bilirubin 11 WBC and HB levels normal) so a CT scan every 3 months will show him if the chemos are working -or not. I have read here that some ladies have done very well on Cap and it has kept them stable for quite a considerable time, I hope it works for you as well. The ease of taking daily tablets is uplifting and knowing you are not trotting off to hospital is fab. Having hair grow back is also great, you canstart to feel human agian.
Thankfully I have not loist any on Eribulin either. I now have what I can only describe as an Lenny Kravitz afro going on ontop of my head - not a good look for a 47 year old caucasian!!!
Hugs to you all, xxxxxxxx