[garyhortonParticipant]

Hi, i was diagosed in  May with non secretory multiple myeloma at the age of 54.  This was after 12 weeks of various scans and tests. I originally went to GP with left hand side pain and back pain.  Blood tests were normal apart from esr level was high.

Recently completed four cycles of VTD and then after scan which was positive, moved onto stem cell transplant treatment at Christies in Manchester with transplant being at the end of November.  Hoping that this gives me more time in remission and obviously everybody is different so who knows how long.

Side effects from treatment were not too bad apart from being left with neuropathy which i am currently on Pregabalin. It is mainly in the feet where i am experiencing pain which seems worse at night, with a burning and tingling feeling. Keeping me awake at night and hoping that fades in time.

Just wondering if their are any other patients out there with the same rare condition as myself, where it does not show up in the blood, but only on scans and bone marrow tests.

Plus any side effects experienced.

• This topic was modified 6 years, 6 months ago by  garyhorton.
• This topic was modified 6 years, 6 months ago by  garyhorton.

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December last year. After 5 cycles of Velcade his blood results were very good and he had dates for his SCT. However, his consultant was very surprised to find his bone marrow biopsy was showing myeloma cells and he said Dave was a non secretor.  He then had two cycles of Cyclophophamide and now on fourth cycle of Ninlaro while we wait fo his latest bone marrow biopsy results. He’s been told that biopsys are the only way to confirm the levels of his disease. Can you tell what scan you had?

Teresa

[garyhortonParticipant]

<p style=”text-align: center;”>Hi Teresa. I had a pet scan after the 4 cycles of vtd. Pet scan is where they inject you with radio active material. Also had bone marrow sample taken</p>

[susie104Participant]

Hi Gary,

I’m non secretory too, I had never been unwell,  I moved house and had some new aches and pains but thought this was because of the house move, how wrong was I !

‘Im similar age to you, and was diagnosed in July this year on bone marrow biopsy as my blood results were within normal range.  I did have a swollen clavicle and an MRI showed two other lesions and then had a PET scan.  I continued working full time the best I could.

With the diagnosis I was then started on VTD as being non-secretory was not elligible for trials, which after four cycles has given me remission and I am now awaiting SCT from UCL London, in January.

My side affects have been burning in my feet mostly at night.

How did your SCT go?  How long was you in for? Was it okay?

 

[gmmaParticipant]

Hi Gary

I was diagnosed with non secretory MM in March of this year age 46. I was in hospital for 8 days prior to my diagnosis with what I thought was sciatica but my GP took blood tests which showed extreme Anemia & an issue with my bones. Once in hospital I had a lot of tests inc CT,MRI & 2 blood transfusions. They discovered I had lytic lesions (holes in the bones) – the damage was extensive; both femurs, hips, pelvis, rib cage & the lower part of my back. The word CANCER was then said to me a lot & by different medical people so it was a really scary time. Eventually after a bone marrow biopsy & a PET scan I was told I had MM. As you know one of the biggest downsides of non secretory MM is that you can’t monitor it with a blood test …. It’s a bone marrow biopsy 😥 which is truly horrible & very painful.

As for side effects with VTD my hair has been thinning & falling out which apparently isn’t supposed to happen. Also I have been pushed into the menopause ( not a man problem!!) & I’ve just started getting neuropathy in my feet which is quite painful (burning sensation).

I’ve just had a successful harvest of my stem cells & will have HDC & SCT next month which I know will be the hardest part. It’s my best chance of a remission so will need to grit my teeth!

Good luck to a fellow sufferer

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