[gmmaParticipant]

Hi Cat

I know it’s a huge shock to be diagnosed so young. I was 46 (Female) when I was told I had Non Secretory MM. That was last March and since then I have had 4 months of VTD and a STC which has been successful in putting me into remission. It was hard but you do get through it. Lean on the people around you as this will help a lot. It does get easier and you do get over the shock but this does take a little time.

Keeping yourself distracted helps and if you are able to keep your body moving that is good to.

g

[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

[gmmaParticipant]

Hi

I was diagnosed with non secretory MM in March of this year aged 46.

I have literally just had a stem cell harvest this week & it was fine. The staff were really kind & explained the procedure really well. I had already read up quite a bit as this is just my way – I prefer to be informed but not everyone does.

I was on the machine with a cannula in each arm for 6hrs & thankfully had a really successful harvest with enough stem cells for 2 transplants.

Prior to this I had VTD induction treatment for 4 months. Despite being told by my consultant that my hair wouldn’t fall out it has been & is now very thin. I have found this really hard to deal with & still do. I know that when I go to the next stage I.e. High dose chemo my hair will completely fall out. My advice for what it’s worth is to be prepared choose a wig, get some coloured turbans & I also got a ring of hair that goes under the turban that is super cute & gives the illusion that you have hair.

The whole situation is incredibly stressful & I have good days, bad days & horrific days. As I go through each stage I give it a mental tick & just try & think I’m closer to the end of treatment & a return to a more normal life. Still working on it!!

I only joined the Forum today it’s taken months before I felt able to but I hope I can help & get help from other sufferers.

I know that

[gmmaParticipant]

I’m going through a similar dilemma as I’m due to have HDC & SCT in about a month. A little while ago I got a wig which isn’t real hair as I was advised that they are very high maintenance however I made the mistake of getting a wig which was as long as my natural/real hair before it started thinning & falling out due to VTD & chemo treatments. I’ve really struggled to master putting it on & styling it as there is just so much hair. In hindsight I wish I’d gone for a shorter style which I think would be a lot easier. I have bought a few coloured turbans & a really clever ring of hair which when worn under the turban give the illusion that you have hair. As we are heading towards Autumn I think this might be the better option & a lot cheaper than the wig!

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