Discouraging news

I started Capecibine 3 weeks ago following pain in my ribs and shoulder. I was started on a low dose which would be gradually increased over 5 or 6 cycles. I had no side effects so was feeling really good about it. I had my bloods taken today and have just heard that my white cells are fine - they were always too low on Vinoralbine - but my platelets are low. He said I can have the next increase dose this cycle but that if the platelets drop much further, I will go back to lowest dose that I’ve just had. Added to this, the pain has come back in my ribs.
It’s really freaked me out because I feel the cancer is growing so I want the highest dose of chemo I can. I can’t see that a low dose is going to keep things at bay.
Any one had a similar experience?
Kelley

Hi Kelley - sorry I can’t help you on this one as I’ve not had that chemo but just bumping this up so someone else might see it and offer advice or support.
Nicky

Hi Kelley
for the first three cycles i had a poor response to xeolda but then it improved … so dont give up all hope …jayne

Hi Kelley…to add to Jayne’s post…I think it took a couple of months for Xeloda to kick in for me too…wonder if it’s cos it’s tablets? Many Xeloda users have very low doses and it’s still effective…would having some bloods help re platelets?
I found some info re platelet infusions here…x

macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Supportivetherapies/Platelettransfusions.aspx

Hi Kelley

Sorry to hear that things not going so smoothly for you. What dose of capecitebine are you on? I believe there is some evidence that the full dose (as indicated by the manufacturer) is too much for many women. I started on a lower dose, went up for a few cycles and then had to have it reduced because of huge problems with my feet. Never went up to what the manufacturer says is the full dose. It did continue to work well for me though for nearly a year - so do hold on in there.

Don’t know anything about low platelets I’m afraid - trouble with all my other blood counts but not platelets (touchwood LOL).

Sending you a big hug.

Kay x

Hi Kay,
Hope things are going ok. My first cycle was 500mg x 2 twice a day. My second cycle is 500 x 3 twice a day. I think the plan was to go up to 500 x 6 twice a day gradually. It looks like this may not happen now. What were you on?
How is the Vinoralbine going?
Take care
Kelley

Hi Kelley

500 x 6 twice a day sounds very high - I don’t think I know of anyone on such a dose (but probably will be corrected!). My highest dose was 500 x 4 twice a day and I only did that for a couple of cycles. I eventually (if I remember rightly) reduced to 1150 total twice a day and that worked well for me for quite some time. It is always worrying if they are talking about a dose reduction but it doesn’t mean that the chemo won’t have an effect.

My oncologist is also muttering about reducing my dosage of vinorelbine given the succession of infections and the really low white and red blood counts. I’m anaemic again and they are talking about doing another blood transfusion in a week or so. I just seem to be living at the hospital or curled up on the sofa - feel I need a break from it a bit and am really hoping that i can get through the next 2 weeks before my next treatment without anything major happening. Might be able to build some strength up then - am ok until I try and move!

Take care, Kelley, and hope things improve soon for you.

Kay x

I had 2500 mgs twice a day so you can have more, but it did give me a rash and hand and foot syndrome. It wasnt for my type of cancer in the end so had to stop it.