[loubellaParticipant]

I am posting on behalf of my husband Chris, diagnosed last April with Multiple Myeloma,no organ damage or lesions or symptoms,just picked up on a routine blood test. He is 67.Following very successful induction treatment last year and excellent care at Addenbrookes in Cambridge, he was very much on the Stem cell transplant trajectory. He was undecided for many of the reasons you have mentioned. In the end he went ahead with the collection of the stem cells which was very successful and these can be stored for up to 10 years. He agreed a break from treatment to consider his next steps and after a couple of months break when he generally felt well, he decided not to go for the STC but to try the Lenalidomide maintenance regime. We also felt there was little information about the prognosis without the transplant but I am guessing that is because in the UK, there is not much research data available as most patients have the treatment. Unfortunately the first dose of the Lenalidomide treatment made him very unwell and his consultant agreed for him to stop, have more blood tests and maybe go back to the treatment but on a lower dose of 5 mg. That is where we are at the moment. I think there is also the option to “Watch and wait” ie have no treatment but regular blood tests and resume treatment if there are indicators that the Myeloma has returned. I agree that quality of life is very important and my husband found it very hard to go from feeling perfectly well to suffering the various and prolonged side effects of the treatment. He could not face another year written off with no guarantee of a positive outcome. It is important to recognise that Myeloma is a very individual disease and different people react differently both physically and mentally and it is a big adjustment to make.

[loubellaParticipant]

I can highly recommend Addenbrookes hospital in Cambridge ,the team there is very good and my husband is having excellent treatment with the latest drugs. Currently in remission but we are also going to be moving /down sizing in a couple of years and will try our best to stay within the catchment area.

[loubellaParticipant]

Thanks Rabbit, my husband and I have read your previous posts so have an idea of your journey. I think that because he does not have any physical indicators to prevent the transplant they can’t seem to understand why he may not want to go down that route.I did read some American studies where the focus as you suggest on longevity rather than length of first remission but at Addenbrookes the focus seems to be on getting the longest remission time possible out of the first treatment and they feel that any risks from the HDT and massively impacted immune section are outweighed by the proven benefits. He is still in 2 minds about it.

[loubellaParticipant]

Thank you SJ2909. Yes indeed SCT,Sorry for typo. Thanks for your reply, all information is helpful. The flat is on site so may be an option and if he becomes ill he could be moved on to the ward. I do get the impression that the care can be a mixture of in the private accomodation and on the ward so we will see after our meeting this week. Thanks again for your advice.

[loubellaParticipant]

Thank you very much for your reply Adrian, it is very helpful to hear from someone who went through the process at Addenbrookes. My husband has had excellent care from the Myeloma team and an excellent result from the induction treatment but does feel as if he has been pushed down the route of SCT without alternatives being fully explained. The consultant said in one of the meetings that in the near future with the rapid development of new drugs, the SCT will become redundant. He has an appointment tomorrow for liver function tests and then we have a meeting with the consultant this week. Quite a lot of questions to ask and will them make the decision about whether he proceeds and then how we handle the treatment process if it goes ahead. Thanks again for your input.

[loubellaParticipant]

I have just arranged a joint single trip policy with All Clear travel insurance.
Husband has recently completed induction treatment for Myeloma and is in remission.
I take statins and blood thinners. Policy includes cancellation cover and is just for Europe and came in at £180.00 for a weeks trip.
Their annual policy was around £600.00

[loubellaParticipant]

Thanks again for the additional information

[loubellaParticipant]

Another quick question for Rabbit please. Did you have the extra 2 months of induction chemo immediately after the stem cell collection process or did you have a gap/break with no treatment? (as you say, living to do and hoping to take a short, much needed holiday).
Secondly, is the maintenance treatment Lenalidomide and if so how do you get on with it, are you able to function normally in terms of wellness and energy levels?

Thanks again for your input

[loubellaParticipant]

Thank you so much Rabbit, that is very helpful, we have a meeting on Thursday to sign consent form for the stem cell collection. So my husband should expect to have 2 more months of the induction chemo after the stem cell collection, that is useful to know and helps with planning how we go forward.

[loubellaParticipant]

I am interested to hear from anyone else who declined the SCT after the 4 months DVTD induction treatment. My husband had an excellent response to the DVTD and is in remission. He is 67 years old, generally fit and healthy and very lucky that the Myeloma was diagnosed before any damage to bones or kidneys.
We feel that we have been steered quite forcefully towards the SCT even though our consultant is saying that in the near future the other treatments will make the SCT obsolete and no guarantee that the remission will necessarily be longer with the SCT than without. He is wondering if the risks of the treatment and long recovery period are actually worth it. We are not retired and run our own small business so the logistics of my husband possibly being unable to work for 3 or 4 months are going to be very difficult to plan for. Has anyone else any experience of what treatment is offered instead of the SCT. We possibly have the option of just going through the process up to the stem cell harvest, having the stem cells stored and then and then putting the process on hold.

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