[lilibParticipant]

Hi Yvonne. I hope that you have now had the appointment with the Consultant and a few more things about the treatment have been explained.

My husband was much, much older than your partner when diagnosed (68), and I really thought he would never be able to drive again, let alone walk more than a couple of yards. I think it’s true to say that things did get worse before they got better, but we go out for walks of a mile or two now when the weather allows, and he only felt unable to get in the driving seat for a couple of months (because of the awkwardness and pain of sitting in one position).

So I hope that you can arrange things around this temporary issue, because I am sure that the back pain will diminish once he starts the induction treatment.

Best wishes to you both,

Lili

[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

[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

[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

[lilibParticipant]

Hello Maria,
I am sorry to hear that you got this news just before Christmas, although I suppose there’s never a good time. My husband was diagnosed in July 2021, so we effectively got an extra year of lockdown. I found it helped us both for me to organise the medication schedule as a sort of diary, and I also noted things that happened on it. This turned out to be very useful to the hospital staff later on when he had his Stem Cell Transplant.

There have been one or two hiccups, but I learned that it is important not to panic if one of the drugs disagrees with you – there are alternatives. Get to know your Clinical Nurse Specialist as she/he will be a wonderful support during your treatment. Best of luck with it all, and hope that you will be in a very good place soon with your treatment.

Lili

[lilibParticipant]

Hi ac, I haven’t looked in on the Forum for a while, but so glad to hear that you went for the SCT, and seem to be progressing very quickly. My husband is gradually recovering, but like you, we are keeping well away from other people at the moment.

Best wishes,
Lili

[lilibParticipant]

That is very encouraging to hear, stoorty, and may you go from strength to strength. My husband had his SCT about a month after you, and it gives me hope that he may be feeling less tired in a matter of weeks. Can I ask how many check-ups and how often you have been checked since the transplant? I am a little concerned that monitoring seems to be fairly infrequent in our case. (Just had next appointment postponed for a month.)

[lilibParticipant]

Thank you for your reply, kh0305.

An update – we got an appointment for a check-up at the ‘home’ hospital yesterday. Very reassuring and thorough doctor who showed us the various graphs of things that were being monitored. Bloods were taken in the morning, and he phoned Mr B in the afternoon to let him know the results. All in all, it’s only one week since he was discharged from hospital, but he is already getting a little bit less fatigued every day.

[lilibParticipant]

Hi SMJ,

My husband had both types of treatment for the harvesting of stem cells. What seems to have happened is that the Cyclophosphamide and G-CSF worked more quickly than expected in him so that by the time he went in to the hospital for apheresis, the optimum moment had passed, and they weren’t able to collect enough. Very frustrating as he spent two full days in the Mastermind Chair, unable to move about or do anything. So after about a week he had the Plerixafor at 10pm at night, and then I had to take him into hospital for 8am the next day to start the apheresis again. This time it was over in about 4 hours.

I recall that he had pains across the sternum on the day before the apheresis, but after it was all done, he was really back to normal pretty quickly.

I can’t answer your other question, because he has now had the Stem Cell Transplant.

Hope that helps in some way,

Lili

[lilibParticipant]

Hi Mulberry,
Thank you for thinking of us! I collected Mr B from the hospital on Wednesday evening. Although he had a supply of various meds, which I have sorted out for him, there has been no word from our ‘home’ hospital about check-ups, apart from one in November.

I have rung them, and left email messages for our so-called Key Worker, but we have heard nothing. It is all rather concerning. I have got an emergency number if all else fails, but I am a bit disappointed with how this seems to be going. Fortunately so far we are ticking along, and, as you said, the patient is resting a lot.

Lili

[lilibParticipant]

Husband is hopefully being discharged on Wednesday. Something else I learned is that he must not do any gardening – he is the sort of person who will do it in spite of advice – so I have had to cut the lawns myself today so that he won’t be tempted!!

Hope that you have been able to make a decision, smj. All the best for your treatment.

• This reply was modified 2 years, 2 months ago by  lilib.

[lilibParticipant]

Thank you for that information, Mulberry. I did try looking at the info booklets, but one of the problems is that some things have changed post-Covid, and I haven’t been able to visit him at all, or speak to any of the staff looking after him. I am basically just a woman collecting the laundry every week, and taking clean clothes in!

We do have emergency numbers that were given to us during the induction treatment, so if I don’t hear anything by Tuesday morning, I will follow your very sensible suggestion, and let them know that he is back home. I suppose I could refuse to collect him from hospital until we have follow-up appointments arranged!

[lilibParticipant]

Hello smj,

I can’t really tell you yet what happens after the SCT. My husband is currently in hospital and had the SCT this week. We have been told that he will probably be home in a week to 10 days’ time. That would be after 3 weeks in hospital. It would have been less, but he reacted badly to an antibiotic and they had to delay the start of treatment.

We have been given a booklet about what type of food to avoid for a month after discharge from hospital. I believe that there will be numerous post-transplant check-ups. We live near the hospital and I can drive, so depending on your personal circumstances, you might need to think about how to arrange things like that. Whilst he has been in hospital, I am not allowed to visit, but I need to pick up his washing and return clean laundry. Again – that might be something to discuss with your Transplant Team – how this would work for someone without home support.

Hopefully, someone will join this discussion with their personal experience, but I hope that some of what I said will help in a small way.

Very best wishes,

Lili

[lilibParticipant]

Best of luck to you, ac. My husband (69) is currently in hospital and has had the Stem Cells transplanted this week. I am not allowed to visit, but we have spoken on the phone today, and he is feeling quite up-beat. He certainly wavered about having the treatment, like you did, but he hasn’t had any of the symptoms so far that they warn you about. Of course, there’s still time. He is expected to stay in hospital for another week to ten days.

[lilibParticipant]

I should have mentioned that it was my husband’s choice to go to Singleton (because they have ensuite shower and wc in each room). He could have had the transplant at the Heath Hospital, but the facilities are not quite so deluxe!

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