[avantrompParticipant]

I get most of my hard info from Myeloma Beacon. They regularly issue reports of the latest research findings. Also, ASH (American Society of Haematologists) conference will shortly take place, attended by thousands of haematologists from all over the world. Myeloma Beacon gives heaps of information on papers etc. presented at the conference.
Annette

[davidainsdaleParticipant]

Hi All

There is lots of useful information on this website but as many have pointed out, it is sometimes not easy to find.

The search engines on the home page ( next to the donate now button) and on the forum are particularly useful.I would recommend trying them.

Hope this helps

David

[rebeccaRParticipant]

Hi Tom, Glad to see you back on this site but obviously not glad to hear you are back on treatment. I saw Dr J today and am pleased to say I will be 5 years post Sct at Xmas and still drug free and in remission. Never thought I’d be saying that 5 years ago! Dr J keeps trying to get me to do 6 monthly tests now but I will only do 4 months and thankfully he is happy to oblige. Did you first relapse after 6 years?
Rebecca

[docmikeParticipant]

I am pleased for you Rebecca. I was hoping for such a remission but alas(10months after second sct) the paraprotein is detectable at 1.1gm/l ;consultant say undetectable is less than 1gm/l ;undetectable is not zero?????so may be a blip /try not to worry . had planned a trip to Australia in January for a month!!!

no triple therapy followed by maintenance in the uk for my situation thanks to nice and nhs England
michael

[HelenParticipant]

I thought I’d just pop in for a minute and see what’s going on- I’m going slowly downhill now. My myeloma is catching up with my kidneys and causing trouble. I have failed Daratumumab and Panobinostat now and went on to Interferon yesterday with very high steroids as a back up / so I have my fingers crossed that they will work effectively for a while love Helen

[patsyannParticipant]

Helen, I’m really sorry to hear that things haven’t been going well for you. I very much hope that the Interferon will be effective and make you feel better for as long as possible.

Pat

[susieParticipant]

Hello Helen,

I am so sorry that it seems your myeloma appears to be causing you long term problems. I so hope the interferon works for you. Keep fighting Helen. I shall be thinking of you.

Love susie x

[janwParticipant]

Hello Helen

I’m really sorry your myeloma is now affecting your kidneys and causing you problems. To go through the two treatments of Daratumumab and Panabinostat without any success must be extremely disheartening and worrying for you and your family. Is it possible to revisit some of your previous treatments to see whether they might work again? Or there appears to be quite a few clinical trials available including CAR-T therapy. Perhaps talk to the Myeloma UK helpline?

I’m currently on cycle 9 of Ixazomib, Revlimid and Dex which has thankfully managed to reduce my light chains from 3000 in May to around 40, which is reaching the level I achieved after two stem cell transplants in 2010 and 2016. The Revlimid and steroid doses wwre reduced a couple of months ago, which has been far easier to cope with in terms of less side effects of fatigue, sleepless nights and dizziness. I just need to try to steer clear of a cold/flu virus which tends to increase my light chains by around 300 and they don’t always reduce after the virus has cleared.

Thinking of you Helen and hoping the interferon works for you.

Love Jan

[whisper2003Participant]

Hello Everyone
I’ve been reading through some interesting posts on here and thank you for your contributions as it has helped me with understanding lots about treatments and what to expect. Could someone tell me how to start a post on here?
J

[webteamKeymaster]

Hi. To start a new post, click on the Forum you would like to post in, for example “Newcomers” or “General”. Then scroll to the bottom of the list of conversations and fill out the “Topic Title” and what you would like to say. Then press the “Submit” button. This will start a new conversation. If you need any help please email me directly via webteam@myeloma.org.uk.

Regards
Stuart
Myeloma UK WebTeam

[HelenParticipant]

Ok – I’ll be brief here-thank you all for replying it means a lot to get messages from others in the same boat.
Interferon didn’t work, I’ve had a nasty bout of pneumonia from which I’m still recovering and I’m back on cyclophosphamide- at a small dose because my bone marrow is now so fragile it is barely functioning- platelets and blood transfusions are the norm now. I probably have a few months left- it is the weirdest feeling- I look well and I feel ok, but I’m making plans with Macmillan rises and district nursing teams about end of life care!
I’m going to Rome next week for a few days- really looking forward to going – we are taking the family so I’m planning on doing everything I can – even if it’s only going by taxi to the outside of things – just to conserve energy-and I’ll be the one in the coffee shop.
I’m going to stop here –
Love Helen

[rebeccaRParticipant]

Oh dear Helen, Thank you for taking the time to update your supporters/virtual gang at this time. The only comfort I can gain from this turn of events is that I believe you will approach the inevitable finish line like the way you have approached the whole journey – in control of events as far as able, informed, prepared and surrounded by endless and timeless love and support. I hope you get to do everything you need to do from here in and make peace with it all. Thank you for your informative posts that have helped many and thank you for giving us a glimpse into the life of a very strong, positive role model – much needed for those newly diagnosed, bewildered and floundering at the prospect of a “new” type of live. Take care and live life large. Rebecca x

[davidainsdaleParticipant]

Hi Helen

I am sorry to hear that your recent treatment has not been successful. It sounds like you have had quite a rough time of it lately.

I would certainly endorse Rebecca’s comments and add that I too have much valued your comments on the Forum website.

I do hope you enjoy that well deserved coffee in Rome, for me it will be a Guiness in Dublin!

Hope this helps

David

[patsyannParticipant]

Hi Helen

Thank you for posting to let us know how you are. I have been wondering how you were getting on with the Interferon.
My husband is now in a hospice after his last treatment, Daratumumab, didn’t work for him and his bone marrow was too fragile to try anything else. It’s a strange and difficult time to be in. I hope you are surrounded by love and support.
I admire your decision to go to Rome and hope you enjoy it and are able to make the most of it. I too have found your posts over the last few years helpful and inspirational. Thank you for that.

Pat

[susieParticipant]

My dear Helen
How sorry I am to read your news that this cruel disease appears to be winning but you say you look and feel well. So concentrate on that, coz none of us really know what the future holds. You’ve fought MM so hard and your posts have helped many of us. Enjoy your Rome trip with your family.
I shall be thinking of you.
Sending love and hugs
susie xx

[Author]

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