Having read so many stories of late diagnosis Mike offered to help out at our GP's surgery talking to the medical students who train there raising awareness at a grassroots level. If we want things to change we have to be proactive.

Lorna x

I thought I'd add another one to the list while at the same time bumping this thread up for those new to the site.

http://mymyelomajourney.wordpress.com/ Written by "debontheweb" Another Deborah who was initially a smoulderer before starting treatment January this year.

Lorna A.

I very rarely post on the site, but I am so sorry to hear that you have lost your beloved Glenn. I can only imagine how devastated you must be.

Lorna

I know Emma has already mentioned her blog in another post but I thought it was worthwhile adding it to your list.

http://ejbones.wordpress.com/ (A 28 year old woman from London diagnosed Aug 2012)

Lorna

It is very easy to join the register to be a stem cell donor. 18-30 contact Anthony Nolan Trust.30-50 become a blood donor and ask to be put on the British Bone Marrow Register. As you'll have read on this forum it's completely painless. I joined the register just after Mike's SCT and I would encourage other carers and family to do the…[Read more]

We live in Wolverhampton! 🙂

Mike (he with the myeloma) was diagnosed in 2010 a few days after his 55th birthday.

I know exactly how you feel about the lack of support groups and I'm more than happy to meet up for a coffee.

My email is: luvlylorna63@hotmail.com or you can find me on Facebook if you search for "Trelawna…[Read more]

Have you thought of emailing Scotty and requesting an invite to the under 50s site yet? They might be really useful to you as you have said elsewhere that your SMM has progressed and you are now on the Myeloma XI trial.

Lorna x

Lorna x

I'll throw my penny worth in too and say Mike is nearly 2 years post SCT and his consultant still forbids him to visit a swimming pool! Oh well. 🙂

Lorna x

From what I understand the myeloma is in the bone marrow that produces all the blood cells and so it can stop not only red cells but also platelets being produced.

Mike my husband had platelets around 70-80 for over a year after his SCT and they weren't too worried.

Lorna x

Thanks for getting back to me. I remember how tough a SCT can be for both parties so you have my sympathy.

Lorna x

Well done! It's no easy task getting through all those dex days and the days of withdrawal that follow.

Jean, Mike (my husband)had a pp reading of 11 after 8 cycles of Velcade, Dex and Cyclophosphamide and they still went ahead with the collection and SCT. He had his SCT on Christmas Day 2010 and is still doing well.

Lorna

I just wanted to add my voice to those before me who have said don't leave us for long.

I too have fond memories of you both and remember how much you helped me when Mike was first diagnosed.

I think us carers will always need you, Sarah, Min, Tina and others who have already had to travel the darkest path.

Love Lorna x

Well I haven't really been on what is now not the new forum, although it still seems new to me. I digress. 😉

As a carer I thought I would ask others in a similar position whether it is just me or if the anger I still feel after more than two and a half years is normal?

When Mike was diagnosed in Feb 2010 the overriding feeling I…[Read more]

My goodness you have been handed quite a bad hand haven't you? I remember how overwhelmed I felt when my partner was given his original diagnosis, but I have come to realise over the last couple of years that we had it easy compared to others like you.

I'm not much help when it comes to certain aspects of the blooming disease but I…[Read more]

I am so sorry to read about your loss. I remember how much hope me and Mike gained when we first joined when we read about how well Stephen was doing.

I can only imagine how devastated you must be.

Love Lorna x x x

Lorna x x x

Great to hear Sam is doing well, long may it continue.

It's worth pointing out that green tea is a no no when on Velcade along with grapefuit in any form. I only mention it just in case.

Lorna x

I do know of another person on DT-PACE, a young lady who attends the Royal in Liverpool. If you fancy reading about her experiences she has a blog:

http://feresaknit.wordpress.com/

Fingers crossed it does the trick for you too.

Lorna

This may be completely unrelated but after my hysterectomy my eyes became very itchy too. I know that Deb Gascoyne and Jet Black both mentioned post SCT menopause so possibly it could be that. Absolutely no help whatsoever I know. Wish I had an answer for you.

Lorna

The first couple of cycles Mike would go up to the day unit for his appointment time, be sent down to get his bloods taken and then wait 4-5 hours for the results and Velcade to be made up in pharmacy. It was only when he started the 3rd cycle that he decided to go in at 9 to have his bloods taken and then come home. Even so, sometimes…[Read more]