[FleeParticipant]

Hi Mike,
I’m not sure what’s next for me, some new treatment that my consultant has put my name in for so I can’t remember what it’s called.
I’m actually in Ireland, attending St Vincents private hospital in Dublin, I was approved to use Daratumumab after my consultant had put my name forward and the criteria was met, there was no charge at first but I know my health insurance is now paying for my monthly infusions.
Fingers crossed for the next one.!
Regards
Frances

[FleeParticipant]

Hi Cassidy, thanks for your kind words, this will be my third relapse, I’ve had an SCT in 2010 then following a relapse I had a tandem SCT in 2013, I’ve also been on Velcade, then Revlimid as maintenance before I started Daratumumab. Its always disappointing when it seems like your starting all over again but I’m very hopeful that one of these new treatments will be the cure. We can only keep on keeping on!
Frances

[FleeParticipant]

Hi Everyone,
I haven’t posted here for a very long time. I was diagnosed with myeloma in 2010 and after many lines of treatment, my current one being Daratumumab it seems it has stopped working for me. I’ve been on it since August 2017, just had my 30th infusion last week, my pp had gone down to 2.8 but has now gone back to 5. This is so disappointing as I tolerated it very well and have had a very strong blood count throughout the treatment which allowed me to continue working full time and be very active in my sport. The plan now is to continue with Dara, watch the pp count and if it continues to rise it will be more bone scans, bone marrow biopsy and a change to one of the new treatments. Has anyone else on here experienced this with Daratumumab?
Frances

[FleeParticipant]

Hi Gavin,
Thanks for your new year wishes, I hope it will be a good year for you too. Im almost 6 weeks post transplant now and doing really well, just attending the hospital for weekly blood checks at the moment, everything went according to plan and I was able to come home on day 14 after transplant. Of course I've been spoiled rotten since I came home but my energy levels are starting to recover so Im looking forward to being more active and getting back to some kind of normality in the coming weeks and months. Im delighted to hear your starting your treatment, I think its a very positive move and I'll be watching out for your posts to track your progress, again very best wishes for the coming year and I really hope things go well for you
Sincerely
Frances

[FleeParticipant]

Hi Bridget,
Just wanted to say your hat arrived and my husband brought it into the hospital for me, thank you so much, it fits perfectly and I love the colour, I've been showing it off to the nurses here and all are suitably impressed. I wear it with pride and it will be nice and warm when I get to leave here and venture out into the cold. Thanks again for your kindness
Regards
Fran

[FleeParticipant]

Hi David,
I've just been reading your daily accounts of your SCT with great interest as I am now on day 13 of my own transplant. I've had the really sore throat though no mouth ulcers, sickness and diahorrea. My blood count has made a big jump from yesterday and I am no longer neutrophenic. The above mentioned symptoms have all gone and Im feeling much better today, my doctor is hopefull I will make it home this weekend.
I really admire your ability to post your progress every day as there were lots of days for me when I didnt even want to answer the phone. Well done and best wishes for a speedy recovery
Regards
Fran

[FleeParticipant]

Hi everyone,
Im now at what they call day 0 in my transplant, I got my cells back today, which went very smoothly thankfully, I've been having a difficult time with nausea so they've sorted me out with a pump for continous feed of anti sickness and its working great.
So its onwards and upwards now, will be waiting for the blood counts daily and hopefully wont have too many issues to deal with. will keep ye updated and thank you for your replies and good wishes.

Regards
Fran

[FleeParticipant]

Hi Elizabeth,
Yes I have my laptop and mobile internet all sorted for my hospital stay. I'm very interested to know how your feeling now after your transplant in August, how long did it take to get back on your feet?

Fran

[FleeParticipant]

Hi Gavin,
Thanks for your kind words, I started out on the VAD treatment but was allergic to one of the drugs so was changed to VMP.This worked very well for me although I started to get some periphal neuropathy towards the end, nothing too bad though.Will keep in touch re progress
Regards
Frances

[FleeParticipant]

Hi Gavin,
I was in your position in April of this year, feeling well with my only symptom being rising paraprotien levels, I chose to have chemotherapy and had four cycles which wasn't too bad at all, I didn't have any significant side effects except for reduced energy, I've had my stem cell harvest four weeks ago and am having my transplant next week.I can't wait for it to be over to get on with my life. I just have it in my head that this year has been given over to myeloma (I was diagnosed in January 2010) but in the new year I'll be in recovery and hopefully remission.It also helps that I have very positive support around me, I'm 45 with two kids and lots of plans for next year. My advice would be to go for it, the sooner you start the sooner you'll get to remission.

Regards
Frances

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