This topic contains 24 replies, has 7 voices, and was last updated by 
jellybabyjan 11 years ago.
Hi Jan,
I know what you mean about something different happening every week. Phil was originally diagnosed due to back and rib pain but early on in his treatment he called me at work one day to say they had stopped his chemo and were not going to let him go home as they were so worried about his legs. He was told if he stubbed his toe he could break his leg. We were just getting to grips with everything and this came out of the blue, we didn't realise his legs were a problem! The next six months we seemed to lurch from one problem to the next but things are much calmer now.
Not everyone has a SCT and many blogs and forums suggest that they may become less common as new drugs become available. The main thing is to get the MM to a stable state and keep it under control, this can be done without a SCT.
I hope Mike is feeling better.
Megan
Hi Megan
Thanks for the info about SCT. Mike has his 6 month, 2 day check up at The NAC in Dec. I'm gonna ask then about it. Just want to know if it will help him and if he can have it. If not then we'll have to cope without!! It seems that everyone has Amy in different places and has gone through different treatments for this disease. I'm just praying for a cure ASAP!! 🙂
Jan x
Hi Jan
Missed this post before. Sorry we have to welcome you to the site. Sorry you have had to join us, especially as you are both young. MM is a horrible disease, but I can't believe the progress there has been in knowledge and the number of drugs developed since I was diagnosed 3 years ago.
I wanted to post because I decided early on I didn't want a SCT. I was 66 yrs when diagnosed and had other health issues. I managed 18 months before I had treatment and then had six lots of CDT and have now been in full remission for over a year.
Trouble is, you do get things to cope with, even in remission, but it is a great place to be.
As Andy, a Site member says, every day is a gift use it well. May you and Mike have many more. The American MM Organisation, which has been responsible for fundraising for development of many of the new drugs has a Project to find a cure, called " Black Swan". I am praying they will be successful. My faith helps me get through and live with the uncertainties of MM.
All best wishes. Keep strong.
Love to you both.
Mavis
Hi Mavis
Thanks for your lovely post. Yes we are both young and that's what I find hard coping with. As I've said, I don't want to be on my own at 46!!
Mike has Amyloidosis not MM, even though the same drugs are used. He has come such a long way since May and we are grateful for every day. Sometimes though, you feel angry, annoyed, upset and all the other emotions and the 'why us' question.
I think because he has it mainly in his heart we worry a lot more. His kidneys are shot to pieces and he's going on Dialysis very soon. So that can be sorted. But his heart, that's a different ball game. He can't have a new one, they've told us that!!
Keeping my fingers crossed (permanently) for a cure 🙂
Jan x
Hi Jan,
I too have AL Amyloidosis which has affected kidneys, liver, spleen, nervous system and blood vessels. I had CVD x 8 cycles which finished in June, and at the moment I am pronounced stable. My kidneys are not as damaged as Mikes and are working at 34% which remains stable. My heart was not involved so I am lucky in that way. The doctors have told me that the amyloid deposited on the organs will eventually reasorb but takes an incredibly long time and the kidneys can regenerate to some extent once they are amyloid free.
During treatment I was very tired and breathless and I think some of this is due to the CVD as although I still get breathless at times now I can exert myself a lot more before it kicks in. The peripheral neuropathy was very hard to deal with but has dropped off now and I think it is probably as good as it is going to get. Hands are OK now but still a few problems with the feet. I visit the Royal Free twice a year to be monitored and so far so good.
It's very bleak for you at the moment I know, especially with the heart involvement, but once the CVD has done its job and Mike can recover from the effects of these drugs I am sure he will feel better. It will be a different life, but it will be a life Jan and you will both adapt. I am 68 and to be honest, there were times when I thought I could not cope with the treatment, but I am glad I did as I feel so much better now. I went to Canada on my own in August to see my granddaughter (and daughter of course!)She was adopted in January as a very tiny baby,1lb 12oz when she was born, and is now a strapping nearly one year old. I am very determined that she will have her Grandma England around for a very long time – and not just on FaceTime! Kev and I are going to USA on 24th for a trip of a lifetime concluding with a small cruise in the Gulf of Mexico. So you can plan eventually, but get the treatment over first and then do what you thought you would not be able to do.
I do hope this has helped in some small way. There is light at the end of the tunnel even for an old codger like me.
My very best wishes to you both and all positive thoughts winging your way.
Pat xx
Hi Pat
Good to hear you are doing ok,and planning such wonderful trips,your news is wonderful and so hopeful to newbies on here.Love Eve
Hi Pat
I see you have had the same treatment as Mike. When was you first diagnosed? They've told him this will be his last cycle (6) as his body can't really take any more. His FLC are at 53 atm. I think Mike's kidneys are beyond re-generation like yours, which is a shame cause he's not looking forward to Dialysis. Like you his hands are ok but it's affected his feet quite bad. Terrible coldness and numbness. He's on a cocktail of drugs every day and hates taking them!
Glad you got to see your daughter and grand daughter, and you managed a trip so far away. It makes you realise how precious family are when the chips are down! Ours have been amazing. I couldn't have got through the first 3 months without my kids. We were told later on that Mike only had 8 weeks to live if he hadn't started treatment!!! Scary eh!!
You are right about everything of course, I just have to realise it myself!! I think it's because Mike has it in his heart that I worry so much. He has been very unfortunate in that respect but we have to deal with it the best we can. It's not just gonna disappear!!
How very exciting for you and Kev jetting off to America. I'm sure it will be the trip of a lifetime! Enjoy 😎
Jan x
Hi Jan,
I was diagnosed in August last year following various tests from June onwards and confirmed by a kidney biopsy and BMB. They had to alter the initial dose from twice weekly to once a week for three weeks because I ended up in hospital with pneumonia. It made it a longer journey but at least my body was able to cope with it. My treatment finished in June this year.
So – you have already got past the 'only eight weeks to live' bit and the treatment is nearly finished when hopefully the amyloid will be stable (that's the most we can hope for isn't it) and Mike is about to start dialysis. Not something I would look forward to either, but it is bound to make him feel better when all the toxins are flushed out from his system. All you have to do then is coddle his heart until he is stronger. I watched a programme the other night where a woman on dialysis was on holiday in Benidorm and they have a dialysis suite at the local hospital where you can arrange treatment under the ordinary EU medical card thing(can't remember what it's called)so maybe a bit of sun could be on the cards for you.
I do hope everything goes well for you both. I am trying to keep my excitement levels down to somewhere manageable and failing miserably. I did have my flu injection today and have a pneumonia one and something else to look forward to when I get back!
Love and hugs
Pat xx
Just bumping this message up.
Hi Pat
Sounds like you had it tough in the beginning. I'm hoping he will feel at lot better when on Dialysis. He's is having Peritoneal Dialysis at home at night because he can't have Haemo because his heart can't take it. Quite confusing and complicated so we have to go on a training course for 3 days.
On another note, we hosted a quiz night on Fri in aid of Amyloidosis and raised £1,030.00. Fantastic night and so well attended. Thoroughly enjoyed it and Mike was great!!
Get excited about your holiday. Part of the fun of going away is the build up!! 😎
Jan x
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