[cartdawParticipant]

Hy all it’s good to see familiar names I have not posted either for a while. Had a stem cell in sept 2015  and still in remission all bloods are normal. Occasional chest infections but nothing major touchwood. I am on revlimid 5mg have got occasional neuropathy in my feet and dry skin . As Andy says every day is a gift and I am very grateful. Xxx Dawn

[cartdawParticipant]

Hi I commenced maintenance treatment around March time after my SCT.  I am on the myeloma IV trial and was randomised to Revlimid.  I started on 10mg but had mild neuropathy in my feet and fingers going numb so it was dropped down to 5mg and seem ok on this.  I’m giving it a go and my pps are stable at 2 at the moment.  I am back at work now although I get tired easily.  If side effects become a problem I will come off it as quality of life is important but 5mg seems fine.  Hope this helps .  Dawn

[cartdawParticipant]

Hi buzz i too was diagnosed in june 2014 .no treatment for the first year as asymptomatic .In may 2015 started cdt and my pp had jumped to 29. And my light chains 7000.  Had melphalen and sct in sept 2015. My pp now 2 and light chains 12 so very happy at the moment. I too have been randomised to revlimid 4 weeks ago so i am also waiting with bated breath. Good luck.   Dawn

[cartdawParticipant]

Hy jan my name is dawn x

[cartdawParticipant]

Hi jan Iv just had excellent results 3mths post SCT. Pp 2 and normal bone marrow result.  I will be monitored every 8/12 weeks or so. My light chains have always been on the high side 700 prior to SCT and 2400 prior CDT in March so much lower.  Did you have any treatment when they rose or is it a watch and wait. My cons not concerned about light chains at the moment.  I’m hoping for a good remission. I’m on the myeloma XI trial so waiting to see if I’m randomised to maintenance or not.  Light chains haven’t been tested again yet.

[cartdawParticipant]

Hya Andrea, Ian, Peter and all   Just an update I have had my results 3 months after SCT and feeling very happy, pp 2 and bone marrow normal,  hope it lasts, feeling well now probably able to return to work albeit reluctantly, thinking of retiring,  I know nothing is guaranteed with mm but for now I’m happy,.  Hope you are all well and happy new year xx

[cartdawParticipant]

Hya andy glad you seem to be doing ok. I’m 3 months after SCT my bloods due after Xmas so fingers x. Feel well though I must say. X.  Dawn

[cartdawParticipant]

Hi Ian, Peter and Andrea   Hope you are all doing ok.  I have been home now for nearly 4 weeks after my SCT at the HAllamshire Hospital in Sheffield.   I am doing OK now and starting to feel more human.  I had a problem with sickness all the way through it really and mucositis mainly in my throat and Gastro. Intestinal tract.  Very painful.  The staff were amazing and on top of it all with Iv meds thank goodness.  The worst part only lasted 5 days but it seemed like forever.  I was in for 22  days.  Managed in the hospital flat for 10 days which was brilliant as it gives you more freedom but then had to go into hospital as felt too ill to manage on my own.  Feeling so much better now .  On the whole not as bad as I was expecting.   Dawn xx

[cartdawParticipant]

Hi mike I have been at home now for 3 weeks after my SCT.  Feeling quite well now only occasional nausea . The energy levels are still low but improving.  On the whole the downside for me was the sickness and the mucositis which not everyone has but it doesn’t last . The staff at the HAllamshire were amazing.  Hope you are doing ok.  Good luck with the SCT.

[cartdawParticipant]

Hi Ian , Peter and Andrea   I am going into Sheffield Hallamshire tomorrow for my stem cell transplant.  I am a little anxious now but I am sure I will cope.  Everybody has a different story to tell but everyone says it is doable.    Fingers x I will cope with all the side effects.   Dawn  x

[cartdawParticipant]

Hi dino I am going into hospital for my stem cell transplant tomorrow.  not looking forward to it as there are many different reviews on it and everyone has a different story to tell but it is part of the recommended treatment and I feel I have to see it through.  I was diagnosed with myeloma last year and commenced 6 cycles of CDT in March this year.  My paraproteins started at 29 before treatment and are now undetectable but my light chains are still 900 but they were 7,000 before treatment.  good luck x   Dawn

[cartdawParticipant]

Hi dave sounds like you have had an excellent response. I finished my 6th cycle last week and have a stem cell harvest bookd for 24th aug the stem cell transplnt might be 3 or 4 weeks after that.  We wanted a holiday and they said said they could work around us. Is there a possibility they could  wait to do the actual transplant after your sons wedding as you have had a complete response. Im not sure what the timescale is from treatment to transplant.  Discuss it with your consultant. Unless they can get you booked in for barvest etc asap then you might just do it .  Good luck

[cartdawParticipant]

Hi Andy glad you are doing well.  I have just completed my 6th cycle of CDT have to say tho the last cycle was rough.   and my stemcell harvest is booked for 24th August so finger x.  My proteins are now 2 and im hoping they stay there and not creep up. xx

[cartdawParticipant]

Hi Mike hope you are well.  I have just completed my 6th cycle of CDT that last cycle was rough and struggling with muscle cramps in my legs presumable from the Thalidomide.  No meds at the moment and I feel relatively normal but still have muscle cramps in my legs. My paraproteins are now 2 , light chains 900 but were 7000.  I think they would prefer them down a little bit more but the Consultant at Sheffield didn’t seem too concerned .  My stem cell harvest is booked for 24th August all being well.   Are you heading for the stem cell transplant yet.     Dawn xx

[cartdawParticipant]

hi Andrea, Ian and Peter

Sorry you havn’t been so well Andrea , Ian and Peter you both seem to be doing well apart from the odd side effects.  I have just completed 6 cycles of CDT , the last last cycle was rough with constant diorrhea and muscle cramps in my legs from the Thalidomide I presume.  I feel relatively normal at the moment with no meds apart from muscle pains in my legs still, which makes for difficulty walking far but im trying to do as much exercise as I can.  My paraproteins are now 2 ,the light chains are still 900 which they can’t understand but they have come down from 7000 so Im pleased with that.  Consultant at Sheffield didn’t seem to fussed about the light chains, more concerned with the paraproteins, there seems to be a bit of mixed views about light chains.  My stemcell harvest is booked for 24th August so its now starting to get a bit scary but im on this rollercoaster now so will just roll with it. Coping well so far , although I have had two hospital admissions throughout the CDT one for a chest infection and one to investigate these pains in my legs.  It’s good to read your posts and I hope we all continue to do well.  They have offered us a flat in Sheffield which is a few mins away from the hosp instead of a room but not sure how it works I presume if you become too ill you have to remain in the hospital.  I imagine I will be in the hospital for the actual transplant.  bye everyone    Dawn xxxx

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