Mikejanulewicz replied to the topic Starting Retreatment in the forum Treatment 8 years, 5 months ago
Hi susie
Relapse, now velcade, that’s me!!
My pp’ started to increase a little 8 months ago, just single figures, but then I got neck and back pain and scan showed a broken neck vertebra which needed stabilising surgery. Had that, few week to recover then started twice hi Susie
i started on twice weekly velcade in jam after 4 years remission.…[Read more]
Mikejanulewicz replied to the topic multiple myeloma taking long time time for treatment. in the forum Newcomers 8 years, 5 months ago
Hi Chrissy
I don’t reply very often, but I do look!!
Myeloma is very scary when you first get it, and remains so, but I do think it is viewed as a treatable and controllable (but not curable as yet ) chronic illness.
Do not panick about the timescale, it does seem forever, but it’s ok.
However start shouting loud if you get increasing pain…[Read more]
Mikejanulewicz replied to the topic SCT very soon in the forum Treatment 8 years, 11 months ago
A very merry Xmas to you both.
You really have done v well. An sct is truly major, don’t underestimate the strength this will have taken. I hope that your day 100 bone marrows are clear, and I hope you both have as good a remission as myself, and I hope you both beat my 36 months.
Take things easy, and have a great 2016.
Regards
Mike
Mikejanulewicz replied to the topic SCT very soon in the forum Treatment 8 years, 11 months ago
You 2 guys doing real well.
Sounds like all the usual side effects and ups and downs of the poison and saving life!
I really like the sound (not the look probably) of man size nappies, I was never offered these but could have done with them on a couple of occasions.
How many days post sct now???, I was out at +19, but did have a bit of an infect…[Read more]
Mikejanulewicz replied to the topic SCT very soon in the forum Treatment 9 years ago
Hi Dino and Louishenry,
I think you two are going to be in a race to be the first out of hospital !
You’re both now on “day 1” ie first day after stem cells going back in.
I was hugging the toilet very hard at this point, I always react to high dose chemicals, I remember that high dose Pernod was particularly bad.
Dino I think your doing really…[Read more]
Mikejanulewicz replied to the topic SCT very soon in the forum Treatment 9 years ago
Hi Dino,
Yep, keeping on top of the vomiting and nausea can take a bit of trial and error.
I had subcutaneous infusion of nozinan which worked real well, but did make me amazingly sleepy (a real bonus) . Don’t be afraid of asking for stronger and stronger anti nauseates as the quicker it settles the better.
It’s great that you are linked to the…[Read more]
Mikejanulewicz replied to the topic SCT very soon in the forum Treatment 9 years ago
I remember it well!
Hope all goes smoothly for you.
Keep posting.
I had sct 3 years ago and just relapsing.
BUT have had a fantastic last 2 years.
Keep smiling.