Myeloma Forum | jazmax | Activity https://forum.myeloma.org.uk/members/jazmax/activity/ Activity feed for jazmax. Sun, 05 Apr 2026 20:30:08 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 e939c0daf93e36df3bb4fb3087b88d2f jazmax replied to the topic Maintenance after SCT in the forum Treatment https://www.myeloma.org.uk/forums/topic/maintenance-after-sct/#post-127967 Tue, 17 May 2016 05:51:02 +0100 Thank you Dawn, this was helpful.  I believe what I will be offered is the same – Revlimid. Pleased that it is working for you now they dropped the dose.  Neuropathy is my existing problem after the chemo, which is the main reason for not wanting the maintenace – but we have to try to do the right thing to treat this and keep the pp down.  …[Read more]

]]> 3067df8b8d8471f220ad10d156b41a70 jazmax replied to the topic Maintenance after SCT in the forum Treatment https://www.myeloma.org.uk/forums/topic/maintenance-after-sct/#post-127925 Sun, 15 May 2016 07:03:01 +0100 Hi David

Thanks for your feedback. I thought everyone got offered the maintenance post SCT?  Where you on the Myeloma XI trial?

I did read a paper on this site regarding maintenance, although it did have a lot of information, it didn’t do a lot to help me decide. It still left me with the same questions.

Im back at the hospital in a couple of…[Read more]

]]> 7e24b77927291fd26de4de072227fbfe jazmax started the topic Maintenance after SCT in the forum Treatment https://www.myeloma.org.uk/forums/topic/maintenance-after-sct/ Sat, 14 May 2016 16:04:49 +0100 Im looking for some feedback about the maintenance programme post SCT.  I had my SCT February, para protein has been ‘negligible’ since and I have been told could go into remission in a few months. But we will see.  Consultants are now talking about the Maintenance programme, which I have reading up about. It’s a bit scary. Side effects – R…[Read more]

]]> 33dc88921d907bd79554c647cd0c364f jazmax replied to the topic Neuropathy after valcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/neuropathy-after-valcade/#post-127502 Mon, 04 Apr 2016 13:37:04 +0100 Jan

Thank you for your advise.  The only thing offered to me were some tablets called pregablin, which is prescribed for peripheral neuropathy. It’s also prescribed for epilepsy and seizures – which put me off straight away.  So far I have been doing without anything, but I don’t think I can continue like time, as it’s ruining my recovery r…[Read more]

]]> 768202644888d79a0818e550c67ee754 jazmax replied to the topic Neuropathy after valcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/neuropathy-after-valcade/#post-127484 Thu, 31 Mar 2016 17:46:37 +0100 Thank you Carol, I shall certainly give this a go.

]]> aefee650898209d97a904d0212419d7a jazmax started the topic Neuropathy after valcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/neuropathy-after-valcade/ Wed, 30 Mar 2016 05:58:22 +0100 After a few sessions of valcade I started to develop neuropathy in my feet. Consultant stopped remainder of cycles as I was very near where I needed to be for the SCT – which I have now had, but the neuropathy remains. Consultant said he could prescribe something for that, but having read the side affects, it’s really put me off.

If anyone has…[Read more]

]]> eb1b7c3c335c9d8fe94cb0a76845a57a jazmax replied to the topic Sct in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-7/#post-127446 Tue, 29 Mar 2016 09:51:39 +0100 Usually within 10 per cent of yr current para protein, so if for example its 50, the they will do it when it comes down to below 5.  Hope that helps.

]]> 816b8a912307794a1f5139de2a11ff2a jazmax started the topic Post SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/post-sct-2/ Sun, 27 Mar 2016 11:53:54 +0100 Hi.
I too recently had a SCT at Heartlands. Been out now about 4 weeks. Apart from the excellent care given, I must say that the isolation was the biggest problem for me. I was literally going stir crazy. Overall, it wasn’t too bad. I did get mild mouth infection, the sickness and diahorrea did kick in after about 3 days, and totally lost my…[Read more]

]]> 392e45ca569b80062c19553e5466be64 jazmax became a registered member https://forum.myeloma.org.uk/activity/p/44426/ Sun, 27 Mar 2016 11:33:45 +0100 0