[caroline123Participant]

Hi – many thanks for contacting me. Yes, it’s fantastic that there are new treatments coming along and having such great results giving us all much hope for the future. When my husband had his SCT in February, it was mentioned at the time, as he was at higher risk of relapsing, that they may put him forward for a tandem transplant,(which is normally given, I understand, about three months after the first transplant?), however, as my husband had responded so well and his bloods were all within normal range it was decided to put him on to Lenalidomide at 100 days post transplant. When he started to show signs of relapsing in July we asked about the tandem transplant and CarT cell treatment but neither of these options are suitable for my him,(possibly relating to his DNA, he has a rogue gene and is an Alpha-1 antitrypsin carrier?) and our fantastic consultant at the QE in Birmingham contacted Kings College in London who are considering him for a trial which I think works on T cells so similar to the CarT cell treatment. My husband is feeling and looking really good and we are very hopeful. We’ll keep you updated. Best wishes Caroline

[caroline123Participant]

Hi Terry, I’m so sorry your treatment hasn’t held you in a better position, it would be lovely for you to have a good long stable period. It’s only an initial meeting on Thursday, then there will be a screening process which will, hopefully, lead to him being offered a place on the trial. Fingers crossed. I’ll keep you updated. Take care. Caroline

[caroline123Participant]

Thanks Tom – it’s only an hour and a half on the train so no problem. As we have been living very quietly for so long it’s almost like a day out – just need to stay safe whilst travelling, have invested in some FFP3 masks, (we normally just use FFP2). X

[caroline123Participant]

Hi – thank you both for your good wishes and support. We are going down to London this week to meet the team running the trial so hopefully will know more after our meeting. My husband continues to look and feel really well so fingers crossed. I’ll keep you updated. Best Wishes. Caroline

[caroline123Participant]

Hi – many thanks for the messages of encouragement and support, I really appreciate it. It’s been a long year and I just hope we are nearly at the point that we can have some more “normal” time. My husband is doing really well 35 days post transplant, he looks a lot better, feels stronger so it’s all very positive. We will be meeting with his team early April so we’ll get the chance to ask a few more questions then. It really does help hearing from other people who have shared their stories so many thanks to you all. Best Wishes Caroline

[caroline123Participant]

Hi Tony, thank you, yes, he has had the transplant – 35 days post transplant now and seems to be doing well so fingers crossed. The possibility of a tandem transplant has been mentioned but we’ve not had the opportunity to discuss it further as yet as it’s still early days. We’ll keep you updated. Best wishes. Caroline

[caroline123Participant]

Thank you so much for your support. I think the last year has just been so busy with appointments and treatments and in my head I thought that if we could just hang on in there until after the transplant that life might get easier, hopefully a good remission and we could start to pick up our lives again and now I just feel very uncertain about the future and what happens next. We will be meeting our excellent team in April so I’m sure we will have a little more information then – my husband has had wonderful care and we have complete faith in the team looking after him.

[caroline123Participant]

Sorry, just realised I should have posted the above in Treatment – not sure if I can move it?

[caroline123Participant]

Hi – I’m pleased your Dad is back home and recovering – such a relief for you all. I think you have to wait 3 months post transplant before you can start to have vaccinations but I may be wrong so best to check with your Dad’s consultant who will, I understand, arrange a schedule for all the vaccinations to be carried out. Best wishes and take care, we have all been through a very worrying time which is exhausting but, hopefully, your Dad and my husband will be feeling much better very soon. Best Wishes Caroline

[caroline123Participant]

Hi – Just to update you on the latest with my husband. He was due to go in for his transplant on the 14th February but 3 days before he developed an infection in his PICC line arm – we could hardly believe it – Friday evening in A and E and then he was finally admitted into our local hospital. He was transferred into the QE Birmingham and it took 10 days to get the infection under control but he finally had the transplant on the 23rd February ( his paraproteins had dropped to 4.2 and his light chain was in normal range). He dealt with the transplant really well – usual side effects 😬 – and was discharged a week ago. Whilst he was in hospital the possibility of a tandem transplant was mentioned. I’m finding it difficult to think about another possible transplant in three months time and wondered if anyone else has had this experience? I’m guessing because my husband’s paraproteins jumped back up so quickly following the six months of VTD and his DNA is in the intermediate range that the haematology team are being cautious at this stage and it will depend on what level the paraproteins are and what the bone marrow biopsy shows at a 100 days. I’m trying to remain positive but would love to hear from anyone who has gone through a similar scenario and gone on to have a good remission. Many thanks. Caroline

[caroline123Participant]

Hi – so pleased your Dad is doing well – it is such a rollercoaster of emotions. My husband’s paraproteins rose from finishing 6 cycles of VTD treatment on the 15th October from 5 to 10 by the 15th November and then to 17 by the 6th December and 20 by the following week when he started the first cycle of DTPace. He completed the second cycle 2 weeks ago and his paraproteins had come down to 7,(but may go lower as he’s still taking thalidomide), but the light chain has really improved and is now in the normal range and he’s due to go in for the transplant on the 14th February. He has coped really well with the last two cycles of chemo and we have everything crossed that all will go well with the transplant now. I’ll keep you updated. Best Wishes Caroline

[caroline123Participant]

Hi – many thanks for posting – that’s really encouraging. We are back for meetings with the consultants tomorrow and Tuesday and should find out how effective the first cycle of DT Pace has been so we have everything crossed that it’s knocking the paraproteins right back down. He should then start cycle two very soon. He was quite poorly after this latest chemo but picked up again very quickly and has managed walks with the dogs over the fields which he hasn’t wanted to do for months! I’ll keep you updated. Best Wishes.

[caroline123Participant]

Dear Jane, the last few weeks have been a bit of a blur but a new plan was put in place really quickly and my husband has had the first cycle of a treatment plan called DT Pace. It’s a more aggressive chemotherapy given as an in-patient and infused continuously over a period of four to five days and I think he is probably going to have two cycles, all depending what happens to his paraproteins, and then follow on to the transplant quite quickly. He came out of hospital last week and has been monitored really closely ever since with blood tests every couple of days to check his levels. He’s coped really well but it has hit him quite hard and as his neutrophils are now zero and his platelets 35 he is really vulnerable and we are living very quietly and just trying to get him through safely to the next stage. It’s a worrying time but we are trying to stay positive. Hope you are okay.

[caroline123Participant]

Hi, from what I understand, as we asked this question ourselves, if the paraprotein level elevates slightly before stem cell harvesting, the very clever machine spins off the stem cells and any other cells that slip through are eliminated by the very high dose of chemotherapy as part of the SCT.
We have a meeting next week to hear what happens next, I’m guessing more chemotherapy to try to reduce the paraproteins again- we are just hoping they have stabilised. It has been a difficult week for us, more so myself I think, as we had psyched ourselves up for the SCT on Monday, moved into the cottage at the QE and thought the meeting with the Doctor was almost a formality so it was a complete shock to hear they didn’t want to go ahead although we completely understand and support their reasoning. I’ll keep you updated. Best wishes.

[caroline123Participant]

Hi many thanks for your response – yes, it has been quite stressful since Monday wondering if this has happened to others and feeling out of control and not knowing what happens next. We have another meeting with the team next week with up-to-date blood results so I’m hoping we can have some reassurance about the way forward.

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