Myeloma Forum | Michael | Activity https://forum.myeloma.org.uk/members/dbrr/activity/ Activity feed for Michael. Sat, 11 Apr 2026 14:18:44 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 1a6bb455df17434d3093f1f27920d3b7 Michael replied to the topic Daratumumab in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-2/#post-137163 Mon, 19 Feb 2018 00:47:24 +0000 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]

]]> b637332c87c6b96930f3f4ce388e5cf7 Michael replied to the topic Daratumumab in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-2/#post-137159 Mon, 19 Feb 2018 00:00:03 +0000 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]

]]> e4a7173e62d5dc589eb62305df9cf0a0 Michael replied to the topic Daratumumab in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-2/#post-137102 Mon, 12 Feb 2018 00:18:13 +0000 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.

]]> ee25dd8790eda34965546833e113b92b Michael replied to the topic Daratumumab, Carfilzomib, Panobinistat in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-carfilzomib-panobinistat/#post-137084 Thu, 08 Feb 2018 22:07:50 +0000 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]

]]> 479b76e748e77d9637727a2271796c06 Michael replied to the topic Desensitisation of painful feet in the forum Side-effects https://www.myeloma.org.uk/forums/topic/desensitisation-of-painful-feet/#post-136823 Fri, 19 Jan 2018 00:35:28 +0000 I understand exactly what you mean but have found nothing that helps.  It’s disheartening.

]]> 40ea50f7f8d3344262417c2dfbb35e6d Michael replied to the topic Canabis oil in the forum Treatment https://www.myeloma.org.uk/forums/topic/canabis-oil/#post-136822 Fri, 19 Jan 2018 00:14:52 +0000 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]

]]> b445bd55b961cb932c5e116fb45f8ee7 Michael replied to the topic Advice and opinions in the forum General https://www.myeloma.org.uk/forums/topic/advice-and-opinions/#post-136764 Thu, 18 Jan 2018 01:20:12 +0000 Good news.

]]> 2a32e1c509716ed254c257aebf2456be Michael replied to the topic Advice and opinions in the forum General https://www.myeloma.org.uk/forums/topic/advice-and-opinions/#post-136722 Tue, 16 Jan 2018 22:29:24 +0000 Having read your posts with interest, I wonder how you are doing after these past months.

Hope you are receiving more compassionate care.

]]> d9e7c22b5a1d3dcec5637a9ed931a0bd dbrr's profile was updated https://forum.myeloma.org.uk/activity/p/50304/ Sun, 02 Jul 2017 00:13:14 +0100 0 2e78e8fca6130f7d7a2bf4d629ce15af dbrr replied to the topic Neuropathy in the forum Related conditions https://www.myeloma.org.uk/forums/topic/neuropathy/#post-134097 Sat, 01 Jul 2017 22:16:02 +0100 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]

]]> 6fcdc5be020cb182fc14f1855c719471 dbrr replied to the topic Hello from the states in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hello-from-the-states/#post-133165 Mon, 24 Apr 2017 10:14:36 +0100 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.

]]> 65be7968552b861ed132608138715a8f dbrr replied to the topic Mistletoe in the forum Treatment https://www.myeloma.org.uk/forums/topic/mistletoe/#post-133164 Mon, 24 Apr 2017 10:10:18 +0100 The oncologist had never heard of it.  Another worker in that department said it sounded like voodoo.

]]> 059389d29f8196b6c67d03fec874485a dbrr started the topic Mistletoe in the forum Treatment https://www.myeloma.org.uk/forums/topic/mistletoe/ Mon, 24 Apr 2017 03:06:31 +0100 My naturopath has suggested that I give myself subcutaneous injections of a mistletoe extract which is often used in Germany for cancers other than myeloma.  My understanding is that it gives the patient a high fever which is uncomfortable for the cancer cells.  That the fever is extremely high, very nearly brain-damaging high, makes me u…[Read more]

]]> d9dff5a87bd75e8b4c05571c07f77c22 dbrr replied to the topic Revlamid with dexamethasone in the forum Treatment https://www.myeloma.org.uk/forums/topic/revlamid-with-dexamethasone/#post-133148 Mon, 24 Apr 2017 01:30:56 +0100 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.

]]> 1eb1f9b37e5df15fb82759c5434702d0 dbrr started the topic Revlamid with dexamethasone in the forum Treatment https://www.myeloma.org.uk/forums/topic/revlamid-with-dexamethasone/ Sun, 23 Apr 2017 17:19:35 +0100 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 neg…[Read more]

]]> 746482e27c5340527bc34c4f4785b337 dbrr started the topic Revlamid with dexamethasone in the forum Treatment https://www.myeloma.org.uk/forums/topic/revlamid-with-dexamethasone/ Sun, 23 Apr 2017 17:19:35 +0100 I wonder if anyone can help me with my questions.  In 2010 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 qua…[Read more]

]]> c4998db615cc07f5b1842593bb372bda dbrr started the topic Hello from the states in the forum Newcomers https://www.myeloma.org.uk/forums/topic/hello-from-the-states/ Sun, 23 Apr 2017 16:41:43 +0100 Having become frustrated with myelomabeacon.com which won’t accept my login for some bizarre computer reason I will never comprehend, I thought I’d try this site which I have just discovered.  I have some questions and will look for an appropriate forum.  Regards, Michael

]]> 5816a88ab270f5943a378fbfac8d0f2c dbrr became a registered member https://forum.myeloma.org.uk/activity/p/49438/ Sun, 23 Apr 2017 16:33:30 +0100 0