[sachbarnesParticipant]

Great news Caroline, dad is set for 16th Feb. They told us at last consultation that there were barely enough staff on to administer chemo on the wards during January! Hopefully everything will start normalising somewhat now and no more delays.

Even though dads paraproteins went from 5 to 0 in the last bloods, his Kappa stayed above range 25 to 24. But his Lambda went from 9 to 3, sending his ratio from 2.75 to 7.54. So that still needs to come down. It seems strange how they both went in different directions. Hopefully STC does the trick and brings that down too.

[kh0305Moderator]

Hi Caroline and sachbarnes,
I hope your husband and dad are responding to their treatments and are in a better place.

I’m one of the new discussion forum volunteers and just wanted to share my experience with you.

My dad was diagnosed in Jan 2013 with MM having spent months visiting the GP with back pain which, like in so many other cases, he was given pain killers for. He was finally admitted to hospital after contracting pneumonia when on holiday in Cuba and from there a week later we had a diagnosis. We were lucky in that his treatments all went seemingly smoothly aside from the usual unpleasant side effects, but he responded well so we didn’t have a delay to the SCT thankfully. However, having entered his first relapse in late 2020 we’ve had a different experience. I guess we just assumed that as the first time round everything had worked so well it would be the same this time. Unfortunately covid meant big delays in getting relapse confirmed and treatments started, and then 4 months in dad responded very badly to the treatment so they had to stop one of the meds and he carried on with the other two to no avail. To say we were disheartened is an understatement and probably emphasised because we had such high expectations following his recovery the first time round. The delays in everything happening throughout and the lack of face to face contact vs our previous experiences haven’t helped and we have felt like we have had to chase everything through this time round to get anywhere.

Dad’s now on a new combination second cycle and goes in in a fortnight for blood test results so we are keeping fingers crossed all is looking better on this treatment. As mulberry has said, it is very much an individual journey and everybody’s experiences are different. I can totally understand why you’re feeling disheartened but there are so many treatment options available to the consultants now, so hopefully the next one will be doing the job for your husband Caroline and dad sachbarnes and that the planned Feb SCTs for them both went ahead and went well. There can be many moments along the journey where it all seems overwhelming and you feel down, but there are so many living with MM and lots of great advise and experiences on here and with the research into MM improving all of the time there are many positives to focus on. I’d just say not to be afraid to keep asking lots of questions of your consultant and nursing team to understand why things are happening and what the options are and push when you think things aren’t happening quickly enough. Good luck with your journeys through the treatments and I hope your husband and dad are feeling better soon x

[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

[sachbarnesParticipant]

Hi all, thanks for the messages. Hope your husband is doing well.

Dad went in for the Transplant on the 16th as planned, but his paraproteins went from * to 4.8 the week before. Our consultant was still happy to proceed, as he was still VGPR from diagnosis (59>19>13>13>10>8>7>10>5>*>5), lot of 5 jumps up and down.

He spent 2.5 weeks in hospital and had a chest infection/mild fever which antibiotics too care of fortunately.

Now he is home recovering, with twice a week checks on his bloods, gcsf injections on and off to keep his neutrophils above 0.5, currently 1. Platelts up and down between 10 and 20. hopefully these start stabilising and increasing on their own now we are at SCT+30.

Anyone know when we can have the first covid jab again?

[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

[kh0305Moderator]

Hi sachbarnes,
Great to hear that dad is recovering ok following the SCT and infections. It must be nice to have him back home again.
I would echo Caroline’s message in terms of speaking to your dad’s consultant as I think it can be between 3-6 months post SCT so best to check with them in terms of scheduling. Hope your dad continues to improve each day x

[tw744Participant]

Hello sachbarnes
Glad to hear that your Dad has got through his transplant and is back home.
As others have said, his consultant will advise on when it is appropriate for him as an individual to be revaccinated.
Talking generally one should be able to have the covid jab at least 2 months after an ‘auto’ (own cells) transplant and 3-6 months after an ‘allo’ (donor cells) transplant, according to both Blood Cancer UK and Anthony Nolan, bearing in mind that these are not myeloma specific charities. In its COVID-19 Vaccine FAQs Myeloma UK states that ‘Re-vaccination should be considered 2-6 months following HDT-SCT’. Link to faqs

• This reply was modified 2 years, 9 months ago by  tw744.

[tony642Moderator]

Hi Caroline,

I am one of the peer forum volunteers and I am living with the disease. I am sorry tohear that your husband has gone through the mill. When I had my stem cell harvest, it also took 2 days, and I think this is very common, so don`t worry about that.

Did he have the transplant and how is he doing now? Please let us know.

Thanks, Tony

[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

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