This topic contains 5 replies, has 5 voices, and was last updated by 
TerryMG 11 years, 11 months ago.
Hi Everyone,
I am sorry but I do contribute to the site very often as I want to get on with my life so spend time corresponding with my MG friends around the world on Pre-War restoration. I am trying to restore a very rare MG while I can. Picture attached.
I was diagnosed with Myeloma in 2010 but while undergoing tests the MRI scanner jogged my back and I was paralyzed from the waist down. I had Radio Therapy and CDT. Thalidomide gave me DVT?s I suspect this was because I could not walk. I got my self walking and in March 2011 I had a SCT. Everything looked fine but I got a lump at the Hichman line site which turned out to be a big tumour. I was put on Velcade and this worked very well and I felt fine. I had a Well Man Clinic form from my GP and I ticked the PSA box. When I saw the result I knew something was wrong. In 2010 PSA was 3.1 in February 2012 it was 27. I had to come off Velcade for the prostrate tests and I now also have inoperable prostrate cancer. I had a good summer and was able to do a pre war rally in Scotland. About June time my right leg started to get big. I spent most of August in hospital but my leg just gets bigger my Igg was 35 and I was put back on Velcade. The next month it went to 29 but then went up again. So I have just had my first month of Lenalidomide. But my I gg is now 42 and PP is 29. My left leg started to do the same as the right but this stopped after the first week on Lenalidomide.
My right leg is like a ?tree trunk? and very painful. They say the mass is so big that it could take some time to work for the right leg. Apparently I have something quite rare in that the Myeloma is intertwined with the muscle. So I have started the second cycle of Lenalidomide today. However, the Doc?s are preparing a case to fund me on Bendamustine. But I am in the South London Health Authority which is administration so I do not know if the post code lottery will kick in here?
I have read some of the comments on the site but any advice on how it works for you and coping with side your affects would be useful preparation. E.g. we all know what Dex does to us!
Regards?.. Terry MG
Terry what a terrible terrible time you have had. Sorry I can't help with any info but I'm sure someone will come along who can help. Best wishes to you and loved the car 🙂
Love Jean x
Hi Terry
Like Jean, I can't offer any information but just wanted to show some solidarity to you in your struggle. Do hope the funding comes through and the Bendamustine does the trick. I know Dai is starting on it soon so should be able to give you some feed-back eventually.
Congratulations at keeping on with the car restoration – she looks a beauty, ddon't think I have seen one like it. I'm not sure I would be able to keep working at if I had to cope with all you are.
Lots of best wishes!!
Mavis
Hi Terry.
I start Bendamustine next Monday but Scott and Keith have already started treatment and may well be better informed about the treatment.:-)
I have had 2 DVT's in the past couple of years… Left Leg in the Summer of 2011 and the Right Leg in the Summer of 2012. Both swelled up like 'Tree Trunks' and both took several week to come down to something near normaI.:-(
I developed a tumour in the centre of my chest but the medics were sure it was MM related and that the treatment I was about to start (Velcade) would cope with it… which it did.:-)
I'll keep you posted re: the Bendamustine treatment but as stated above, Scott and Keith are ahead of us both and they might chip in as soon as they read this thread.:-)
All the best and I think your car restoration project is wonderful.8-)
Dai.
Hi Terry
You do seem to be suffering somewhat with this awful disease. I was diagnosed Dec 2007 and have had 2 SCT's and now on Bendamustine after 3 relapses. I start my second cycle on Monday with a 1 hour infusion followed by the same on Tuesday along with the obligatory Steroids. Side effects? not all that many in my case apart from the usual fatigue and a lack of appetite for the first week but no other major problems. It is known to take sometime to start working so I don't yet know how things are progressing with me. Blood tests are been taken at least once a week so as to monitor the situation. That's about all I can tell you as yet although you do have to be careful with your kidney function as Bendamustine can have an adverse effect in this area. No doubt the hospital will warn you of this and give you the appropriate medication to combat any problems that may arise.
Best of luck with it all.
Keith.
Hi Everyone,
First of all thank you for your support. If Dai, Scott & Keith can keep me in the loop and they seem to be leading and I may be a follower! I did have DVT?s but I knew it was not that and since August I have had 5 ultra sounds on my right leg and one on the left when it started to show signs of doing the same thing. My local Cancer Unit was closed down and my consultant moved to another hospital. The new hospital advised that I should go their A&E as there was no room in their unit. I was treated for DVT as elimination and put in a general ward which was the wrong treatment but the general medical staff would not lesion to what I was telling them. After about a week I was moved to the Cancer unit which was much better. I was speaking to new people who understood Myeloma waiting for my consultant to return from holiday. I left hospital with my calf at 43 cm. I measure it every day along with other things on a daily spreadsheet and they know I know chapter & verse on all sorts of things. Today my calf is 52.5 cm and now the top of my led is much bigger too. On the first cycle of Lenalidomide the first 3 weeks were OK with some of the side affects like spongy feet, ringing in the ears and a few electric shocks in my right foot. As with all the treatments the areas with MM & Plasmacytomas let you know were they are. The pain in the right leg reduced. However, the rest week everything else was Ok including my left leg which has gone from red to a brown sun burn colour. The right leg went from brown to the raw state at the start.
The right leg is so big that none of my trousers or shoes fit. I now have to wear jogging bottoms and today it looks like I am wearing tights!!!
I spoke to Myeloma UK and they say they can help my Consultant if she has an issue on funding. They also confirmed what my consultant said, in that it may take several cycles for Lenalidomide to start working. The new hospital will be linked with Kings College Hospital London where I had my SCT and she in involved with trials also.
As I keep on saying ?failure is not an option? (Apollo 13 Space Mission statement).
I will keep you updated on progress.
Good luck to everyone in the MM club?? Terry MG
Picture in May when off Velcade and before the leg trouble started in June
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