Starting Retreatment

This topic contains 6 replies, has 3 voices, and was last updated by  Mikejanulewicz 5 years, 7 months ago.

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #128304

    susie
    Participant

    Hi All.

    With my para proteins steadily rising it looks as though I am going to be starting more treatment soon, which will be Velcade. I have had nearly two years drug free after RCD.

    I absolutely dread more treatment. The RCD knocked me off my feet and the thought of going through it all again makes me wonder how long I would have if I don’t have further treatment. Might sound dramatic but I do believe in quality before quantity. If this treatment meant a possible cure it would be different but its pouring toxic drugs into your body just to give a short period of remission.

    Sorry to sound so feeble, but I feel very down at the thought of it all. Could anyone tell me how Velcade affected them when given at relapse. I need some positivity please.

    best wishes

    susie

    #128332

    andyg
    Participant

    Hiya Susie.

    No one knows is the answer to your question. However the chance of getting to remission with Velcade, in my view, and being drug free again is worth going down the drug route. Obviously that’s only my point of view. There is always the argument of quality over quantity of life that must weighed up.

    I can’t really recall many problems when I was tried with Velcade though it is known to cause peripheral neuropathy though this is less of a problem now that it’s given as an injection. When Velcade works it works very well and quickly so I’ve been led to believe.

    Hopefully your PPs will stabilise and your need to start treatment will be delayed a lot longer.

    Every day is a gift.

    Andy xx

    #128336

    susie
    Participant

    Hi Andy

    Once again you put things into perspective for me and I thank you very much. I guess I was having one of those sorry for myself days. It’s just I have one doctor (consultant) telling me he wont start treatment until my PP’s reach 30 plus unless I develop symptoms. And another (specialist registrar) telling me they don’t wait for symptoms but start treatment just on rising PP’s, it’s now at 26. So I don’t know who to believe or trust. My PP’s ran at around 30 for several years before M M became active.

    I’ve just read your other post. It seems you are having a good time having plenty of holiday breaks. I hope you keep well and enjoy your times away.

    Take care & best wishes

    susie

    #128341

    Mikejanulewicz
    Participant

    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.
    It’s not bad. No nausea, and I do get sick very easily. Minimal tiredness, but I do get painful legs for 2 days. I’m now on my 4th cycle but due to low platelets have the velcade weekly which is better. Para proteins have halved now, so doing ok.
    Kind regards to all
    Mike

    Mike

    #128342

    Mikejanulewicz
    Participant

    Sorry
    Don’t know what went wrong!!

    Hope you get the gist!!

    Mike

    #128343

    susie
    Participant

    Hi Mike

    Thanks for your reply. Very reassuring that side effects appear limited for you. Maybe Velcade wont be so bad.

    What were your PP’s when you started treatment. What dose of Dex do you have.

    I hope it continues to knock your M M on the head and you’re soon into a good remission.

    Best wishes

    susie

    #128344

    Mikejanulewicz
    Participant

    Hi susie

    4 yrs ago pp 45

    Dec slowly creeping up from 10, started treatment post operation at pp 18, now after 4.5 cycles down to 9.

    Good luck with everything.

    Mike

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