[dbrrParticipant]

I wonder if anyone can help me with my questions.  In 2010 when I was 60, I had stage 3 colon cancer, surgery and 12 chemo treatments.  Most of them included oxaliplatin infusions.  That particular drug has given me very nearly intolerable neuropathy, so much so that I believe that taking it was the worst decision of my life.  Having negatively affected the quality of my life, I gave up folow-up oncology appointments in 2012 and believed that if cancer were to return, I wouldn’t treat it, rather letting things progress as they wish.  At that time I was told I had MGUS.

As sometimes happens the MGUS turned into myeloma which was diagnosed a month or so ago after feeling sick for a couple of years and experiencing ever increasing neuropathic pain during the winter.  Because of my general distrust of oncological therapies, I decided against the SCT and the first few options I was offered of chemo, the ones that are most likely to give the patient neuropathy, leaving me with Revlimid and dexamethasone.  I’ve had dex before, and while I didn’t like being all puffed up like a chipmunk who has spent too much time stealing seed from birds at the feeder, it was tolerable.  However, the thought of taking another form of chemo scares me, perhaps unreasonably so.  Last fall before my wintery health changes, my wife and I ordered a tiny caravan with the thought of taking our first vacation in more than fifteen years during the summer that is fast approaching.  I’ve tried to find information about Revlimid, but a few questions remain unanswered.

I certainly realize that everyone’s experiences with these powerful poisons are highly variable, yet I’m still interested to learn how various people react.  My goal is to get through this summer and, before we are all washed into the ocean, see parts of New England and my state of Maine which I haven’t visited in so many years.  I fear that the chemo will ruin any chance of that.  I am concerned about the nausea and exhaustion and wonder if my kidneys, which are already not working properly, will go haywire.  I had planned to start this new regimen on Monday, but the closer that time gets, the less I want to give it a try.  I am afraid that if I react badly that stopping the drug will not stop the bad reaction.

Of course no one knows.  My belief is that no matter what one does, it will very likely be the wrong thing.

For those of you who have read this seemingly endless tome, thank you for making the effort, and if you have any thoughts regarding these questions I will be interested.  Without the horrible experience from 2010 I’m sure these decisions would be so much easier.

Best regards,

Michael

• This topic was modified 7 years, 6 months ago by  dbrr.

[susieParticipant]

Hi Michael

Welcome to this site and sorry you’ve had to join us.

I had Revlimid and Dex as part of the Myeloma X1 trial. That was in 2014/15. With the first two cycles I did find it made me feel rather rotten although I’m sure a lot of it was down to anxiety. I knew little about Myeloma and its treatments, or what side effects were common. However, as the cycles went on, it seemed my body got used to it and I had less problems. In the first cycle it brought my paraproteins down from 63 to 17 and by the end of treatment they were undetectable. I have had 2 1/2 years drug free, so I think it was well worth it.

Unfortunately my PP’s are rising again and I shall be starting Velcade within the next few weeks which I don’t relish. Myeloma is very individual and what goes for one doesn’t go for someone else. My advise to you is to learn as much as you can about the disease itself, as it does help you cope with the treatment.

I wish you the best. You’ll find this site very informative and the nurses on the info line are so helpful.

Best wishes

susie

[dbrrParticipant]

Thank you for your thoughts, Susie.  I’m sorry to hear that you will need to start chemo again and wish you well during that process.  It’s a rough road.

[Author]

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