[kh0305Moderator]

Hi Graham,
Good to hear the positive news following the first cycle and that you are feeling happier now that you’ve been given more information and seen some good results. Hoping the second cycle goes just as well and that the calf is feeling better! xx

[lilibParticipant]

Hi Graham,
Hope all is going well with your second cycle. I just wanted to say about your family events, we managed to do that sort of thing in the ‘breaks’ in the induction treatment. My husband was well enough when he wasn’t taking the Dexamethasone to have some visits away from home.

Once you get close to the timing for the SCT I would forget about going away anywhere! But it sounds as though your family celebrations will be in the early part of this year, so enjoy them. My husband’s paraprotein level was 62 at the start of treatment and it took almost a year until he was in a position to have the SCT.

Best wishes to you and your family,

Lili

[mriampositiveParticipant]

Lilli
Many thanks for your comments, it’s good to have comparative information if you can share any more information I would be grateful.
Kind regards
Graham

• This reply was modified 1 year, 3 months ago by  kh0305. Reason: This post has been edited to remove personal details

[lilibParticipant]

Good morning, Graham,

I am happy to share most information publicly, but I don’t know exactly what you would like to know. For context, my husband was 68 when he was first diagnosed, and it was just pure luck that the GP decided to do a blood test and send it to the hospital because he had suffered a bad back for literally decades, and was just seeking more effective pain relief.

Within 24 hours of the test result he was being phoned by the hospital asking him to come in the next day for a biopsy and MRI scan.

So VTD treatment began the same week, but after the first cycle (which was very effective in reducing the paraproteins), they had to stop all the medication because something had caused a bad skin rash over 80% of the body. After a month, a new treatment was resumed without the Thalidomide*. Then a break over Christmas. Then yet another treatment. So it took from August 2021 until April 2022 to get the paraproteins down below 10, which was what the Consultant was aiming for prior to Stem Cell harvesting and Transplant.

So during those 9 months we managed to visit our children about three times, staying in a self-contained house or apartment. Unfortunately we had to be mindful of the fact that they were in work or in university, so very exposed to people with Covid.

*We discovered eventually that Thalidomide was not the culprit. Turns out that he is allergic to a type of antibiotic.

Sorry for rambling. Hope some of this is useful!

Lili

[mriampositiveParticipant]

Lilli
That information is really helpful I hope your husband’s treatment is going well now that they have worked out what was causing the rash. I should be finished my 4th cycle on 3rd April this year with my son’s wedding on 1st July so will have to see what happens with the SCT timings 🤞.
I hope all goes as well as it can with your husband’s treatment. How are you coping with all this?
Kind regards
Graham

[lilibParticipant]

Hi Graham,

We are both pretty well now, thank you. Husband is on maintenance treatment which is only one tablet twice a day. (My spreadsheets are no longer required. LOL!) His hair has grown back, and he has had some of his inoculations (you have to start again after HDT/SCT because it wipes out the immune system). Life has returned to something approaching normal. We are even thinking of a short break to Madeira this year.

I wish that at the beginning we had known how long it would be to get back to where we are now, but I suppose that even the Consultant doesn’t have a crystal ball.

There may be a local support group in your area with whom you might like to make contact. Up until recently, we have only met on Zoom, but we did attend the Christmas Meal with our group, and it’s nice to chat to other people who are fellow travellers or supporters.

Best wishes,

Lili

[mriampositiveParticipant]

Lilli
I know what you mean about the spreadsheet 😂. I live in Glasgow so will see if there is a group that I can join as it would be good to have other people’s experiences and maybe I might be able to help others.
Many thanks
Graham

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