[bearParticipant]

Without knowing what treatment you are on, it is not possible to say precisely, but any treatment will have some impact on you, fatigue is a common denominator.

[bearParticipant]

We were in the same position as Sheila appeared to be oligosecretory…now not the case. We did find trials, but the issue you raise is of entitlement. If trials receive public funding, then yes, you may have an angle here.

[bearParticipant]

Forum moderator…someone has posted junk again, obviously thinks we are all Muppets here falling for quack treatments.

[bearParticipant]

We live in North Wales…the local health board Betsi Cadwalaldr is rated the worst in Britain with numerous shocking failures in care. We get treatment for Sheila at Manchester Christie, though you can also get treatment at what was Clatterbridge but now moved to a new building in Central Liverpool.

[bearParticipant]

It does depend on the risk factors. Have you had the workup to determine the genetics as some variants are high risk and might justify early intervention.

[bearParticipant]

Sheila was diagnosed 8.5 years ago, having had the GP tell her her back pains were due to bad posture, she endured 11 fractured ribs and a collapsed vertebrae for three months. She ended up bed ridden with shingles, the GP home visit again resulted in no help.
Having had VTD and a kyphoplasty, she went back to running 3 miles a day in the Snowdonia hills, and does so still, age 63.

[bearParticipant]

My Sheila has just been told she is oligosecretory, latest relapse seen on PET scan…wondering about the FLC assays and monitoring

[bearParticipant]

You have not told us what you are taking!

[bearParticipant]

Dear forum admins! You need a captcha to stop these forum posts by robotic morons.

[bearParticipant]

I think we’ve just been spammed by someone selling something…

[bearParticipant]

Just another 106 to go

[bearParticipant]

Sheila’s consultant said 2-3 years for a relapse….relapse not survival. Patients can have many relpses. You have done well and should expect to continue to do well.

[bearParticipant]

https://petition.parliament.uk/petitions/611884

[bearParticipant]

I can only tell you of my Sheila’s experience…she has waist length red hair, she elected not to have a SCT. Sheila was told this was the best option but not the only option. Her hair is her identity and she could never consider loosing it.

Like you she had a very good response to VTD and got to zero and twice tested MRD- and had thalidomide maintenance for a couple of years. After a few more years she had daratumumab which was very tiring…being only 45kg in weight the doses hit her hard. Now ixazomib and lenalidomide and once again down to zero. Eight years now since diagnosis and she still runs up 500 foot steep hills.

Treatments are improving all the time and the future is so much more hopeful.

[bearParticipant]

Damn phone autocorrect….hmds.info

[Author]

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