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Thank you. This disease seems to be full of surprises and keeps one guessing as to what’s really going on.

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When Revlimid stopped working for me in late 2017, I was relieved as I had too much fatigue and weakness, and too much nausea and was ready to die. However, I got talked in to, and it took a lot of persuading, trying Daratumummb (Darzalex) infusions which are given weekly for nine weeks, every other week for three more months, and then once a month until it no longer works. This might be of no use to you as I live in the States and my cancer is the kappa/lambda light chain variety. However I’ll go on a bit in case it might offer you encouragement because the treatment has been surprisingly successful, and as far as infusion therapies go, the side effects are pretty mild, certainly not intolerable to the extent I found Revlimid and dexamethasone to be.

When I stopped taking revlimid/dex my light chain numbers were very high, my kidneys were failing and I was expected to live less than six months. Daratumumab has brought the numbers down within normal ranges and my kidney function is close to normal. I have completed twelve infusions. Since it helps only 40% of those who try it, I am indeed lucky. I have reached the point where I am considering terminating the treatment because six hours trapped to an IV this frequently is difficult to accept, and, as with the revlimid, the fatigue is horribly difficult. I’m trying to decide whether I would have a better summer with no more infusions. Perhaps I’d recover some energy. Perhaps the myeloma would climb right back.

I hope that this is not completely irrelevant to your situation and that the drug is available to you. I know that the UK and the US are not on the same page with much of this research. It makes me very glad that I refused the stem cell transfer which I had been encouraged to do.

Best wishes,
Michael

[dbrrParticipant]

I am sorry to hear that this unpronounceable infusion didn’t help you, Helen.  I have not taken thalidomide, but I hated lenalomide.  I even felt grateful when I was told that Revlimid had stopped working for me.  I had been chemo-free for two months, but in that length of time the light chain numbers behaved very badly, and I was told if I wanted to have a decent summer, or even a summer at all, that I had to get with the program and that daratumumab was the only option left me.

I hope you are finding the thalidomide helpful with only minimal side effects.  I don’t think anyone gets away with no side effects.  Wishing you lots of luck and all the best.

[dbrrParticipant]

My first Daratumumab treatment, nine hours long, was not at all what I had feared it might be.  Before administering the drug itself, I was bombarded with drugs which included steroids and Benadryl, enough Benadryl that I was able to spend much of the day sleeping, which suited me just fine.  I experienced very little in terms of side effects, maybe a tiny bit of shortness of breath, and I was a bit wobbly and ready, after the adventure, for a long night’s sleep.  The next day, perhaps because of the steroids, I had more energy than I have had in a long time.  Unfortunately the following day I was back to my usual exhausted self.

Having dreaded this treatment, it was a relief to find it so innocuous and so unlike any chemotherapy I have experienced in the past.  I guess it really isn’t chemo, in that it is not a poison, but I do not understand the mechanism.  Next Thursday it will again take 9 hours, but subsequent treatments might go more quickly, which would be nice.

I just thought I’d write in case others have as much apprehension as had plagued me.  It might very well not be as bad as you had expected.  Quite a pleasant surprise to find so little to complain about.  In a month or so, we will find out if it is working.

[dbrrParticipant]

Hi, Helen,

Are you feeling better after all these months?  Do you feel that the treatment has been worth the horrible side effects?  What a shame that so many of these treatments make people who already feel sick, sicker.  Wishing you well.

[dbrrParticipant]

The Revlimid I had been taking is no longer working, and my oncologist recommends that I be given weekly daratumumab infusions and hope to extend my life beyond the six months he thinks I might now have.  When I had colon cancer eight years ago, the surgery was followed up with 12 treatments of an infusion which included oxaliplatin.  The resulting neuropathy has been excruciating.  I am finding it difficult to agree to another infusion when my past experience has been so bad.  I wonder, if I should find this new drug to be intolerable, whether the side effects will stop when I stop the drug or whether they will be permanent.  The neuropathy was supposed to have been temporary.  I’m not anxious to add some other ailment to an already too-long list of complaints.  Understanding that we are all different, I would be interested to hear other people’s experiences with side effects.  Best wishes to all.  Michael

[dbrrParticipant]

I understand exactly what you mean but have found nothing that helps.  It’s disheartening.

[dbrrParticipant]

As someone with myeloma from a state in the US where grass is legal for medical purposes, I find that oil infused with CBD-heavy marijuana helps with nausea from chemo, and a number of people I have met in the oncology clinic smoke the THC variety which makes their chemo treatments bearable.  I don’t like smoking it, and I don’t like how stupid the THC makes me feel.  I have enough brain problems with chemo already and don’t need to add to them.  I also bought some salve with CBD marijuana that I rub into my feet that I’m told has helped some people cope with their neuropathy, but it hasn’t helped me.  I don’t think I’ve met anyone who hopes it will affect cancer one way or another, just chemo-induced nausea.

[dbrrParticipant]

Good news.

[dbrrParticipant]

Having read your posts with interest, I wonder how you are doing after these past months.

Hope you are receiving more compassionate care.

[dbrrParticipant]

The only relief I have found for my neuropathic pain, which first began 7 years ago when I received oxaliplatin for colon cancer, has been a combination of fentanyl and oxycodone.  I have been taking Revlimid for myeloma (in my third course) and that has made the neuropathy worse in my feet and hands and has added the nasty sensation of bugs dancing and cavorting on my lips.  Narcotics are a temporary relief at best, and never extinguish the pain, but they do tend to lessen the difficulties.  I hate being dependent on them, but they give me a chance to feel somewhat productive.  In desperation I have tried capsaicin cream in the strongest versions available in the US, hot castor oil, acupuncture, cranial sacral treatments, massage and others that I can’t think of at the moment.  In the States, they try to tell me that narcotics don’t work for neuropathy, and in my case they are absolutely wrong.  I’d have given up without them.  Not an especially cheerful commentary, but if they are available to your husband, I hope he will find them of help.

[dbrrParticipant]

The medical system in the US is so screwed up, I tend to trust other countries more.  Here the insurance companies run the show determining what is “medically necessary”.  Our system makes a lot of sick people much sicker.

[dbrrParticipant]

The oncologist had never heard of it.  Another worker in that department said it sounded like voodoo.

[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.

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