High risk Multiple Myeloma

[03081963]

Have just been diagnosed HR Multiple Myeloma Shocked scared and start treatment on Friday

Would be so grateful for advice guidance and any help ?

Thank you so much in advance

This has always been a great source of help over the years and big thanks to all who advise and partipate xx

[willjames2]

Hi,

Not sure on your planned treatment regime or your age etc but I was diagnosed at 41 and that was 10 years ago. I’m still having some treatment but I’m in remission. I work full time and although I have some minor side effects, generally I’m good.

There would been too much to put in an email regarding my treatment and experience but I’ve remained wholly positive and I’m lucky to be treated at Manchester Royal Infirmary, they are fantastic.

I’m not the guru by any means but I’ve been there and done it. There is probably others who know much more than I, but should you want any info and it helps in anyway I’m happy to have a phone conversation.

Onwards and Upwards

Kind Regards

Scott

[03081963 in reply to willjames2]

Hi thanks so much for taking the time to reply

So appreciated

Really good to hear you are doing so well am so heartened

Thank you

[Aldo68 in reply to 03081963]

Hi, would agree with Scott. Age is relevant as is the treatment you are about to embark on.

I was 46 when diagnosed at stage 3 & was given an expent 3 yrs, I am now 55 & also in remission.

I’m not sure by HR Myeloma tho? You have it or you don’t surely. Need more details on expected medical treatments. Good luck.

Alan x

[03081963 in reply to Aldo68]

Hi Alan

Thanks so much for replying High Risk MM is more aggressive apparently and a higher percentage of bone marrow is affected

I’ve started a clinical trial RADAR chemo jabs once weekly

Chemo drugs daily

It’s great you are doing so well 🙏

That’s what I need to hear it’s a very scary place when you are first diagnosed isn’t it

Thanks again

[03081963 in reply to 03081963]

Hi Scott thanks for your kind offer of discussing MM

So glad you have been getting great treatment at Manchester good to hear

I’m being treated at UHCW COVENTRY and have started the RADAR clinical trial am one week in of 4 month regime

Jeanette