[misterboyParticipant]

Trishananny – thanks for keeping us updated. Really good to read that your husband has settled again and can have his 2nd jab on Monday.

Wishing you and your husband all the best on this journey.

[misterboyParticipant]

Thank you all for your updates, I appreciate it is not easy to update these while going through new treatment.

I need to make my decision re Elranatamab in the coming weeks and your updates have been particularly helpful.

[misterboyParticipant]

Dave, Penny, Terry et al, thank you so much for your openness regarding your experiences to date.

I was diagnosed in 2015. I am coming to the end of my current line, with elran being mooted as the only option now available to me. I have been in two minds whether to take this treatment – to explain, all decisions I have made throughout my myeloma journey have been that quality of life is more important to me than quantity. I absolutely hate being in hospital, my anxiety goes through the roof, so as you can imagine any treatment requiring more hospital attendance or the prospect of it due to side effects are big negatives for me. So with little detail out there, your detailed experiences have been particularly useful to me and any continued updates in the coming weeks will continue to be invaluable.

I wish you all the very best with your Elran journeys.

[misterboyParticipant]

Hi Scott.  It is very interesting that you have posted the issue you are having with your eyes.  I too have experienced something very similar.  My eyes struggle to focus and keep up with whatever is going on inside my brain to the point my eyes feel strained.

As a patient of a similar age, I am very interested in your story – how long ago was you diagnosed?  What were your initial symptoms?  What were your light chain levels?  How long did it take before treatment?  Apologies for all the questions, but it isn’t often I come across many other early 40’s patients and am still wading through the unknown and constant waiting!

[misterboyParticipant]

Hi Liz.  Its tremendous to hear you have made such good progress, it sounds like you went through a lot in 9/10 months but have come through it well.  I am particularly impressed that you are playing tennis again – if there is one thing I am missing it is my sports; I have been doing a lot of walking and some on my exercise bike but that is not the same as going out running or on my mountain bike.  I am still getting an awful lot of pain in my upper back and have recently started to get weakness in my legs, particularly if I have done any exercise at all.  I have had my PET scan which seems to have shown some activity in the original thoracic site and another in my lower back.  I am now waiting for another BM biopsy before we know where we go with this…. I hate the waiting!!  How long did your SCT take, from initial treatment, hospital stay and recovery?

All the very best

 

[misterboyParticipant]

It does seem slightly different, i had surgery to remove the plasmacytoma as it was wrapping itself around my spinal cord, following that I had the bone marrow biopsy which I gather was ok but my light chains have been steadily climbing since then despite the radiotherapy too.  Yes I am under a haematology specialist at leicester.

All the very best.

[misterboyParticipant]

Hi Annlyn and thank you so much for your reply and support to my idea.  You are absolutely right, there are some good news stories within the forum, the problem is you have to wade through to find them!!  I hope the idea gets further support.  Great to hear you have been in remission for one year now and that your experience at Newcastle Freeman is good – long may it continue.

all the very best.

[misterboyParticipant]

Thank you for your response Avril.  I will indeed be speaking to my consultant about it but was really looking to gain an idea of other people’s experience of when/what point treatment started in terms of kappa/lambda ratio plus other symptoms (if any).  For example is there a ratio that would be treated even if there are no other symptoms?  Lastly, when does a plasmacytoma become MM?  As many people say on here, MM is very individual and therefore I am just trying to get a picture and not necessarily any answers (I hope that makes sense!).

all the best.

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