Thank you so much for all your kind comments xxx
Hello Cashmore
I wish you and your mother all the best for the coming months. I fully understand how your mother feels I think when the time comes I may feel the same. You are a lovely daughter who is there for her when she needs you and for being understanding with her decision.
Keep in touch and let us know how your mother is and also you to draw strength from our group for what you may be feeling.
Love and ((((hugs)))) to you both xxx
Hi Cashmore,
Your mum has made a difficult decision but it is her own decision. She has obviously got to the stage where her body can’t cope with the treatment anymore. She is lucky to have such a caring and attentive daughter. I will be thinking about you both. xxx
Hi ladies
Hope you have enjoyed the sunshine this week. I am now enjoying my week off Cape- so far, side effects have been manageable, thanks for all your tips. Just keeping fingers crossed that it works. Seeing onc tomorrow for results of ultra sound scan, but know it will be too early for Cape to have made any impact;hoping there will be no more progression. Wish there was a cure for scan anxiety. Have a good weekend all
George x
Hi George,
Good luck with your results. My GP prescribed me with Valium (diazepam) to help take the edge off things on results days. I find they certainly help me.
Best wishes xxx
Hi all,
Just started this treatment today and nervously waiting for side effects (or hopefully lack of)…
Tournesol x
Good luck George! Let us knowxx
Tournesol, hope things go well, this chemo was fine for me after the first cyle or two…keep mobile tho. I didnt and I got a dvt! However, all of us are at risk of one if we dont keep mobile…not just the drugs
Moijanxx
Hi Tournesol, so sorry to hear about that kind of brain met(well, none are that nice), will be thinking of you. I did do a lot of couch potato and i was on antisickness drug a lot and i think the combination must have done it for me. Just try to do the odd walk out to the kitchen etc when you think of it!
I still do a lot of couch potato, but am on heparin to keep my blood thin.
Moijanxx
Hi Tournesol
Good luck with the peachy soldiers I hope you tolerate cape as good as Waffles. I started cape back at the beginning of November but have had my dose reduced twice and have had 3 weeks off to give my hands a rest. Everything else has been ok but my hands were bad so red and splitting no matter how much I creamed them. I am on my 12th cycle and so far so good the hands are doing well. On the plus side my tumour decreased from 35mm to 26mm at least this chemo has made a significant result for me.
Good luck to all love and ((((hugs)))) xxx
Hi Tournesal,
I had issues with an acid stomach on my first cycle. Someone mentioned to me to make sure I took the tablets exactly 20 mins after food as this helps. It seemed to help with me. If you’re not already doing this it may be worth a shot. Best wishes xxx
Hi all
What I wanted to mention a friend who went onto cape found she was very sleepy on this drug. She used to sleep for hours maybe living alone didn’t help as this allowed her to sleep as long as she wanted. The consequences led to her having a blood clot in her stomach so be aware too much sleep can cause DVT. She has now come off cape but now needs to inject a drug into her stomach for 6 months.
xxx
Hi Tournesol and Marirose,
tournesol, when i started, they asked me to keep a journal of how i felt on cape, it was when I went back to see onc at the rend of the very first cycle that they reduced it for me… i was pretty miserable…are they seeing you monthly?
i was reviewed monthly and then given the next months tabs to start. Re the sickness, im glad you feel better, but we were told its easier to prevent sickness than to stop it once it starts…and it was true for me, i agree with asking to reduce the dose if need be…it still worked.
the other thing is, i too got sore fingers and toes, i think thats par for the course…i used udderly smooth, but there are other useful creams which are much cheaper. I know some people smother cream on at bedtime and put cotton gloves on top.( I found id removed the gloves in my sleep next day, but its good if you can do that) i got lots of cellulitis whilst on cape and i dont now!
i also got urine infections ++, maybe the loose stools assisted me to cross infect my bladder…I get these on Eribulin too, im very paranoid now about wiping from front to back…in the loo and using feminine wipes after, or even washing down there with soap and water( again front to back) if it was convenient.
lastly, just to say, Marirose, it sounds as if your fingers were pretty sore…so i dont blame you for having a break…but i had a break when id been taking it for almost 22months…st georges were trying to track the bug which causes my chronic attackks of cellulitis, …anyway, i had a break to see if the antibios would work better…i was only off it for three weeks and the cancer got resistant to it. (That also happened to letrozole) so
i now advise people to plod on with a drug if it works, (if you can cope with the s/e)because we have only so many…options… i mean, im sure I will get fed up with Eribulin because its i/v, but my onc said im on it till it stops working and I can see the sense of that.
there are only a few oral chemos and cape was such a blessing in that i was free to travel abroad and go away a lot, but now im on the end of an i/v 2weeks out of three…love to you both
Moijanxxxx?
My lovely mum, took a turn for the worse on Monday, she sadly passed away last night, I’m absolutely devastated, I just thought you ladies would like to know as you have all helped me and her through her treatment x
Oh, Marirose, i think we crossed posts…I did get a dvt in my leg on cape… And i think it was due to not bring active enough too…not sure about sleeping, but i used to lie down for a whole day when i felt so miserable during that first month or so and my ankle swelled a bit, but got no soreness…so the onc wasnt worried, but it went on and later the whole lower leg swelled up and i went to the gp…stillno pain or soreness…was sent to a general hosp who ultrasounded and found two clots in calf and one higher up. I now have to inject for ever…apparently as…we cant have warfarin as cancer patients…and we are all at risk of dvt as cancer patients. In fact some people only find out they have cancer when they get a dvt! Cancer alters the clotting mechanism.! Sorry to depress everyone, but best to know
love Moijanxx
Hi Cashmore,
I am so sorry to hear about your mum. She was obviously dearly loved which would have been a great source of comfort and strength to her. My thoughts are with you and your family. xxx
Cashmore, first of all really sorry to hear about your mum. It sounds like she made the right decision about treatment. Thinking of you and your family.
Waffles, Moijan, Barton and Marirose, thanks for the tips. I’ve tried the 20 min thing this morning. I am worried about DVT too as my legs are swollen since they upped my steroids last week. I have not been offered blood thinners since being in hospice and wondered if that is because I’m so ill anyway! I will ask the next doctor I see.
Tournesol x
Hiya cash more
Although I don’t post on this thread …I know how it feels to loose a mum …but you must take the happy memories with you and she is now at peace and of out pain.
She was very lucky to have such a kind and thoughtful daughter.
The next few weeks will b very busy but take some time out to grieve and reflect on earlier happier times.
Hugs xx
I’m so sorry Cashmore. Love and best wishes to you and your family, thinking of you xx
Hi Barton, dont worry, Im happy to hear that a break or two worked for you.
Personally, having had three failed drugs, I would be reluctant to take a break…if a drug works…for me…trouble is, I wouldnt know until I came off wether the nasty has become resistant or not.
My suggestion was to only to stay on a drug if its working…and manageable, but I agree people should make their own choices.
I read on another website that several people were invited to stop letrozole after 5 -7 years like
i was and had the cancer return in mets. Like I did …and letro no longer worked for them too!
Now the oncs realise that people should stay on Letro for at least 10 years. I think, during my break from letro, my cancer’s dna changed from oestrogen pos to neg, and so now im left worse off, with less drugs to use.
And Cape is so convenient, being a tablet, maybe after your experience, i’ll ask the onc if I can just try it again, if Eribulin fails.
All we can do, to help one another is to share our experiences…but in the end the choices are up to the individual,
much love,
Moijanxx
Dear Cashmore
I was so sorry to hear your sad news your Mother made the best deciision in the end and you have been there for her all the way. We are all here for you should you need to express your feelings. Condolences to you and your family and friends.
Love and (((((hugs)))) xxx