[MikejanulewiczParticipant]

Hi All

Just to let everyone know that daratumumab is now able to be infused over a rapid rate of 90 minutes!

This is only for second cycle onwards and only if never had infusion reaction.

It makes a huge difference. What was a 8-4 day is now 9-1230!! Much better.

Ive now finished my 3rd cycle. Paraprotein whee reducing 17-13 but last months pp lost!! So fingers crossed it may be better than that.
I certainly feel great. My bone

[MikejanulewiczParticipant]

Sorry- wrong button!!!

My bone pain is 90% better and no side effect except steroid poor sleep for 3 days.

Hope everyone is ok.

Mike

[patsyannParticipant]

Hi All

I hope the rest of you are still doing well on Daratumumab. Sadly, we were told last week that it hasn’t worked for David. I think we knew that as he’d just got weaker over Christmas and his blood counts were all very low. He’s now in hospital and we’re waiting for a hospice bed. It was just too late for him but I believe results are good for those given it at an earlier stage so I hope the news is good for the rest of you. Thanks for your support over the last couple of months.
Pat

[MikejanulewiczParticipant]

Hi Pat

I’m so very sorry that it’s not helping for David.
I can’t get my head around why they don’t allow dara much earlier, cost I suppose??!!

I hope you get a hospice bed very soon. I know that hospices are fantastic places with very caring staff. They help both the individual patient and family and friends. Will it be close for you to visit?

Pat, look after both of yourselves (if that makes sense!)

Mike. Xx

[patsyannParticipant]

Thank you, Mike!
Yes it will be quite close for visiting. He may even get home with support from them once they’ve had a chance to assess him.
I will indeed look after both of us. You take care of yourself too.

Pat

[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

[Anonymous]

Hi Frances,
I am only 9 months on from diagnosis so am a newbie to the world of myeloma. I was heartened to read you have had 8 years of effective treatment that has allowed you to have a good quality of life but feel disappointed for you that you have hit another bump in the road. I hope you get back on track as soon as possible and your story gives me lots of hope and encouragement.
Best wishes
Cassidy

[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

[Anonymous]

Dear Frances,
Thank you for sharing your story, I admire your fortitude immensely. From what I have read having a tandem transplant is an extremely arduous process. I am sct ineligible due to cardiomyopathy caused by taking doxorubicin and my total kidney failure, so this is no longer an option for me. I have had 8 cycles of pad chemo and am now in plateau and off treatment with no matinence, I have ppcl myeloma. I have noticed in my research that patients in the USA seem to have access to drug therapies much earlier than here in the uk and doctors have quite different approaches to treatment.
I hope you have a good relationship with your hematologist, mine is as allusive as the scarlet pimpernel, we could just do consultation via email l.o.l
Best wishes
Cassidy

[MikejanulewiczParticipant]

Hi Cassidy and Frances

Cassidy- yep myeloma can often be considered more of a chronic illness ra
My diagnosis was 2012 and I’m probably as well now as at any time in the last 7 years. One thing you said- your elusive haematologist! That shouldn’t be the case. Create havoc!!

Frances- you having been on daratumumab gives me real hope, thank you for sharing that. Sorry that your pp’s have risen. Do you know what is next for you?? I presume your daratumumab was as a trial as the nhs only licenced it for fourth relapse myeloma from spring last year.

Hope all goes the well for everyone.

Mike

[Anonymous]

Hi Mike
I always love to hear of people who are doing well on treatment. As for my elusive consultant, I have come to see him as more of scientist rather than a regular doctor, he’s quite young compared to me (55) and he is ball of energy, I think I would have to sedate him to keep him still enough to have a prolonged conversation L.O.L
I prefer to rely on my nurses who are fantastic and if I want anything from the doctor they always get it for me. They do touchy-feely very well and it’s not something that is on offer from “computer boy” as I like to call him L.O.L
I have to have a good sense of humour about my somewhat precarious situation otherwise I’d go completely mad. My husband is my carer and is world class at doing it so I am a very lucky lady
Best wishes
Cassidy

[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

[Author]

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