Soni

Hello everyone.  I am glad to know about this site.  I was diagnosed with stage 3 in June 2014.   At that time , I had radical surgery including a partial bowel resection and then 18 sessions of chemo with Paclitaxel.  I went into remission until 2018 when I had a recurrence .  At that time I had  2 sessions of Cisplatin which made me quite ill. with vomiting and chaotic thoughts,no appetite, no sleep,  even speaking in a language I didn't know.  At the 3rd session, which was to be a long,  desensitizing session, only 30 mls of IV was infused before I had a severe reaction and the treatment was stopped.  I developed red, swollen and painful joints all over my body and could not walk or move without extreme pain.  I ended up in hospital for 2 weeks.  At that time I wrote in my journal that I would never submit to chemo again.
Yesterday I had my oncology appointment and learned that my Ca125 has gone up for the 3rd time and my doc says we should consider more chemo.  Since I seem to be so drug sensitive, he says we should try Caelyx.  When I looked up that drug, some of the side effects were horrendous.  Stated that skin on palms and soles of feet could get red, blistered , swollen  and painful, so much so, that a person may not be able to walk or use hands to hold a phone or hairbrush.  I am scared .  I want to keep some quality in my life and should such a severe reaction occur, I wonder IF it is reversible when treatment has been discontinued or if , as a widow living on my own, would I end up in a care facility?  If anyone has experience with Caelyx, I would appreciate your comments.  Thankyou.

Comments

  • Hello again @Soni - yes, you have been through a lot when you are dealing with the adverse reactions - so sorry to hear that it just doesn't make this whole process any easier. And yes, those side effects can seem so daunting. The good part of that is the DR and medical team know you have these sensitivities so they will be monitoring you and watching for all of that. Have you expressed your concerns to them about this drug and the possible outcomes; a treatment / care plan for all considerations? Sometimes a discussion with a nurse practitioner or another member of the care team may prove comforting. 

    Again, I am hoping someone who has had the Caelyx treatment can post about their experiences. 
  • Hi, I have had one Caelyx treatment and so far, just tiredness. Skin is fine. The hand foot syndrome does not strike everyone. I have another treatment in a couple of days and will post experience after a couple of weeks. I am 3C with persistence of disease.
  • I appreciate your feedback on the Caelyx treatment JanCan.  I know not all women suffer side effects but with my history of suffering almost every side effect listed, I am worried.  Looking to your  post after your next treatment.   Wishing you good luck.
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