[nigelpParticipant]

Thanks for your advice.
I have done that,
Not posted much so was not aware how to post a new thread.
As I just look on the latest posts , so thank you.

[nigelpParticipant]

I was originally diagnosed with solitary plasmacytoma back in 2016.Since then now been told it is multiple solitary plasmacytoma due to many plassmacytomas in differing parts of my body, but mostly head and neck.
It is a strange disease as nothing normally shows on my blood test and my bone marrow is said to be fine.

I have had radiotherapy and chemotherapy, which has previously worked however after my stem cell transplant,in Feb 19, I had a relapse with another tumour plasmacytoma on my neck which occurred in July 20, which inititially worked but reoccurred in the same place.
Now been treated with daratumumab since 291220.Do not know if it is working or how long it takes to show a response. Having a scan next week the swing consultant.
Never spoken to anyone with anyone with multiple solitary plasmacytoma or anyone been treated with daratumumab.Which would be good.
These plasmacytomas cause terrible damage I have had a broken nose,diabetes now on insulin due to one of the plasmacytomas blocking my pancreas.Radiotherapy causing a cataract in my left eye leaving me unable to see out of it.
Which has now been rectified due to a cataract operation.
I was told originally at my original diagnosis it was better than multiple myeloma.I am not sure that was correct.
I recieve all myeloma treatments but it does seem a differing blood cancer, which there does not seem to be a lot of information due to its rareness.
Hoping there is someone with a similar experience to talk to.

[nigelpParticipant]

Hi there I had my SCT last year in Feb.
I was wondering if they were still going ahead through this crisis.
I was in for two and a half weeks,everything seemed to go to plan and I had no major problems.
I found the isolation hard only my wife visited me every few days. I had a tv in the room but could not get a internet connection very often.I could not concentrate to read very much.So with the tiredness slept a lot.I lost my appetite but kept trying to eat as much as I could.
I felt the worst a week in.then picked up quite quickly.So was eager to go home and felt elated when eventually they said I could.
My wife was brilliant at keeping my spirits up, I can not thank her enough.
The NHS staff were fantastic.
Hope everything goes well for you both.
Best regards Nigel

[nigelpParticipant]

Hi Matthew.
Yes very true, it certainly does.
I found it very daunting.especially understanding all the blood results.
Luckily my wife was a nurse and came with me to consultant meetings, as it was hard to take it all in.
I do not think you are panicking just correctly concerned.
Nigel

[nigelpParticipant]

Hi Mathew sorry to hear about your wife.
I was diagnosed in 2016 with a soft tissue solitary plasmacytoma in the nasal area,5 weeks of radiotherapy,in remission until feb 2018.Then further plasmacytomas .So now re-diagnosed as multiple solitary plasmacytoma.One of the tumours blocked my pancreas, so I had to have insulin as a diabetic.
The chemotherapy I had included dexamethasone a steroid,on the days I took that had to increase the dose of insulin.The diabetic nurses in consultation with my consultant haematoligist decided the dosage.
Luckily the chemo worked , so I am no longer diabetic or need insulin.
In Feb 2019 had a stem cell transplant and currently in remission.All the treatment I have had is Myeloma based.
I am sure your wife consultant will liaise with her diabetic team.It has to be closely monitored with steroids as it put your sugar levels up.
Best wishes Nigel

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