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This topic contains 8 replies, has 5 voices, and was last updated by  beefy1805 11 years, 3 months ago.

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  • #103001

    beefy1805
    Participant

    I was diagnosed with MM in 2004 and finished autologous transplant and HD chemo in Sept 2004.
    I have been in remission until February this year when my consultant put
    me on 10mg of Revlimid daily.
    My reading dropped from 15 to 9 after the first cycle which is where it has now plateaued after cycle 3.
    She now thinks I would benefit from another transplant/HD chemo.
    I trust her implicitly but I am getting rather anxious over going through the awful side effects again; specifically the awful sore throat,being sick for days on end, no food for 10 days with the desperately low feelings.
    The staff were great at Bart's but I cant help my apprehension.
    Have things improved since 2004?

    #103002

    eve
    Participant

    Hi Stephen

    Welcome ,9 years,remission,and with another SCT may be another 4/5 years remission,and the way things are going a possible break through in controlling this cancer,the odds seem to be in your favour.

    There cannot be many people around who new what it was like in 2004?,Slim my husband said he would never go through it again!!,There are people on here who have done it again,Scott is in the process of going in to Kings for second sCT!!!!,They are getting people in and out a lot quicker,!!!!

    As a carer I can only say if it buys you exta time it must be worth the discomfort of a few weeks,to have many extra years with your family,I wish my husband had that chance,but he got less than 6 months remission,so he is now on CDR onceits in control,then maintenance. Until it stops working.

    Can you actually remember that much about it,!!!!! Eve

    #103004

    Eva
    Participant

    Dear Stephen,
    I think there are two ways you might be able to go with such an incredible result.

    You might be able to take the Rev for a while if you get funding and therefore delay transplant if you are really dreading it. If you relapse, there is a possibility that another med will get you ready for transplant. You must also check how long they can keep your stem cells from before, and whether they can harvest new ones.

    As far as meds for side effects – I don't know how authoritative I can be.

    When I had an anaesthetic at a younger age, I vomited for about four days and was told they had run out of options to control the side effects. A few years later, after another anaesthetic, I was given other meds and felt only slightly ill. I asked how this could be possible and was told that, in general ,as the years go by, there are increasingly more effective ways of reducing nausea. I've also heard some patients say that each transplant can be different, even for the same person. However, there will never be a cast iron guarantee of a reduction in suffering.

    I imagine that your treatment options might be constrained/partly determined either by funding options, 'current good practice,' or the opinion of your consultant.

    There is something I have done on a couple of occasions when I've felt really challenged by nausea or side effects. I've done this because I'm not very brave. This is not a medical recommendation; it would have to be checked with a consultant…… I've taken a sleeping pill that has previously been approved by my doctor, and somehow, being drowsy for a few hours has helped me cope, at least during a long night. I hope you will never feel bad enough to wish to be knocked out, whatever you do.

    I'd like to remind you that some drug treatments that we might employ instead of a transplant can have difficult side effects as well. I've been on Velcade/cyclophosphamide/Dex recently. During the first four cycles I thought I was sailing through it. Then suddenly I got pretty severe nausea, diarrhea, fatigue, and I've spent a lot of time in the past six weeks in bed. I've mentioned to my husband, that while this wasn't as traumatic as my transplant, the last few weeks have been as difficult, as say, my first month at home after my transplant. Today I've had a few hours of feeling better and have even been able to enjoy a meal, so maybe my state will improve.

    I think the main thing to remember is that so far, your myeloma has been brilliantly responsive.
    Good luck,
    Eva

    #103003

    beefy1805
    Participant

    Hi Eve

    Thank you so much for your advice.
    I have decided to go for another transplant as the only ill-effects I had were while I was actually in Bart's. Once I was home I felt stronger every day.
    I suppose I just needed a little reassuring!

    Thanks again

    Steve

    #103005

    beefy1805
    Participant

    Hi Eva
    Thank you so much for your reply.
    i am lucky in that I normally have no problem with anymedication I have been prescribed. The Revlimid ensures I get a good night's sleep!
    My consultant took me off Dex as it gave me insomnia but no boost in energy unfortunately.
    Anyway, I owe it to my fantastically supportive family to go through a short period of rubbish.
    I am hoping that BUPA will fund this as they have been with the Revlimid (open-ended incidentally).
    I am seeing my consultant in August when I will tell her I want to go ahead with the transplant – let's see if I get another 9 years!

    Thanks again

    Steve

    #103006

    Vicki
    Participant

    Best of luck Steve,

    A bit perverse but your post gave me such a boost….remission of 9 years wow. My partner Colin was diagnosed in 2011!

    It is a tough road but very best of luck with round two

    Vicki and colin x

    #103007

    tom
    Participant

    Hi Steve

    Well am impressed you have had 9 years 😀 well done you and your team 😎

    I had my SCT done in 2009 and am in remission, but if it fails (am sure it wont ) I say I would have another one, the sore throat is the most I recall vividly but mine wasn't that bad as I used more mouthwash than soft mick when it was getting low I got a new bottle they have plenty in stock ha ha.
    Good Luck with this road to remission.

    Tom Onwards and Upwards

    #103009

    beefy1805
    Participant

    Thanks guys

    Yes, 9 years is apparently exceptional. It would be nice if any MM suferers who have been in remission for more than the average 3-5 years could post their length on here and give the newly-diagnosed some uplift.

    Thanks for taking the time to reply.

    Steve
    x

    #103008

    beefy1805
    Participant

    Hi Tom

    I suppose I was being a bit of a drama-queen with the side effects as a couple of weeks of a sore throat is just like having a cold for a while!

    Good luck with everything- it can be done if you trust the experts an d live a normal life (which does involve certain real ales and wine!).

    Steve

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