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 wa…[Read more]

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, m…[Read more]

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.

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 r…[Read more]

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

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…[Read more]

Good news.

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

Hope you are receiving more compassionate care.

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…[Read more]

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.

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

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.