Loubella

Forum Replies Created

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • #151961

    loubella
    Participant

    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.

    #151950

    loubella
    Participant

    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.

    #151941

    loubella
    Participant

    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.

    #151940

    loubella
    Participant

    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.

    #151413

    loubella
    Participant

    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

    #151354

    loubella
    Participant

    Thanks again for the additional information

    #151350

    loubella
    Participant

    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

    #151349

    loubella
    Participant

    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.

    #151343

    loubella
    Participant

    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.

Viewing 9 posts - 1 through 9 (of 9 total)