This topic contains 95 replies, has 23 voices, and was last updated by Perkymite 11 years, 4 months ago.
Hi, My name is Ann
I am 57 and found out I had MM Feb 2013. I have been put on CTD and I am in my third week of taking Thalidomide and Dexamethasone with a view of my 1st Chemo tablet next Thursday. I have also had one treatment of Bisphosphonate. I have a damaged vertebrae and yesterday went for an MRI scan to check the rest of my spin, so I am at the early stages really.
The thing I can't get over is in December I was decorating my lounge ready for Christmas and here I am off sick for the past three months, how fast did that come on?
It is nice to know that there is a forum for Myeloma as we are all going though the same thing albeit different stages.
Ann
xx:-)
Hi Ann
Welcome to the forum, yes it's unbelievable! My partner Colin 56 was diagnosed in October 2011. In that year he did ski-Nig in the January, weeks golfing holiday in march (had shingles). May we went to Mexico for 2 weeks (kayaking, volleyball, tennis etc), July walking holiday to Cornwall…..back pain started early August and then September blood test reveal the dreadful,truth! Like does take a different turn but be positive and you will get through it.
Colin had an sct in November 2012 and is making a slow,but sure recovery 🙂
Vicki and Colin x
Hi Vicki & Colin
Wish you two would stop showing off how fit & adventurous you are
For us a mile or two stroll along Blackpool prom !
Mind you I galloped through all the treatment ,tough old boot after all
So there !
Peter
Hi Vicki and Colin
Many thanks for your reply…..
Gosh, that must have been a real shock after being so active. You think to yourself "Why Me" but I guess I will just have to get on with it. It is better knowing so you can adjust your life around it. My husband was diagnosed with throat cancer last Feb (2012) which was a real shocker, he is now ok after having Surgery, Chemo and Radiotherapy. The following year it is my turn. (I do joke with him and tell him, that my cancer is worse than his)I cant let him have anything worse than me ha!
I can see both sides of having Cancer and I do believe that it is worse for the carer.
How long did Colin wait to get his SCT?
Ann xx
Hi Ann
Welcome to the forum. Where are you being treated? There are probably other people on the forum close by. I am 51 and was diagnosed last August and will probably start treatment soon. I wish you and your husband luck in your treatment and recovery. Take care Andrea xx
Hello Ann
Sorry to hear your news, but welcome. It is almost a year to the day when I put my first post on this site, when my husband, Pete, also aged 57 was diagnosed with Myeloma. I was made to feel so welcome and really don't know what we would have done without it.
Pete was very active, but it all started with pains in his back and ribs.
In a nutshell, Pete had 7 months on CDT, had his SCT in February 2013, spent 23 days in hospital and then had 4 weeks at home. He went back to work last Monday. He is good at the moment (touching lots of wood!!!) just waiting for his taste buds to come back and his hair to grow back!!!
All in all, it was a blooming long journey, but I hope this will give you some encouragement.
Take care
Ann and Pete
Welcome Ann, you will meet lots of good people here. I was diagnosed in July 2009. Had my STC in No 2010. MM has now reared its ugly head again and I have just started on 2nd line treatment Velcade with Dex. Apart from the odd bouts of bone pain, which can floor me, I am going well.
I wish you all the best of luck.
Pete : are you our oldest member? I am 70years 4 months.
Kindest regards – Vasbyte
David
Hi David
Cheeky young man ! NBC
71 this June , although when my beard dropped off ,I was told I looked 10 years younger , so the family voted on or off , they lost its growing again
I think I am a long way off being the oldest member , could be one of the other Peters
All the best
Peter
PS : 10th June , presents & cards much appreciated
Hi Anne
I was fit as the proverbial butchers dog in May last year , non related blood test said otherwise , lo & behold I had MM
Luckily found very early
Beginning July started CTD , had no problems , then SCT this Jan , now in full remission
Back on zometa in a few weeks
Wil you be having an SCT
All the best
Peter
Hi Anne
I was diagnosed on my birthday aged 53. For the previous 12 years, I had been running my own successful business which employed 25 part time staff. My health up to my diagnosis had been OK with just a few colds and a few strange pains. However, I went to bed one night and couldn't move in the morning, or for the next week, with three vertebra in my spine collapsing. Even then, I just thought I had a very bad back! Almost six weeks later, myeloma was diagnosed from the results of an MRI scan.
It is such a shock and a worry when anyone close to you is diagnosed with cancer. But I hope your treatment is successful and you recover well.
All the best.
Jan
Hi Andrea
Many thanks for your reply, it is nice to hear back from others and be part of this forum.
I am being treated at Yeovil Hospital, Somerset.
It must be strange, that you have to play the waiting game, it must be on your mind daily. What is it that makes them decide when to start your treatment ? Do you have to go for blood test on a regular basis?
Wishing you all the best
Ann xx
Hi Ann and Peter.
Thank you for your reply, I do not feel so alone now, as only other people in the same situation understand what we have to go though. Although my husband has been really brilliant, with many trips to the A&E in the early hours of the morning with pains, which they kept saying was kidney stones.
It is good to here that your husband is doing well, and has gone back to work, has he gone back full time?
I would like to go back to work, but because of my damaged vertebrae I can't do that. I am waiting for treatment to insert some kind of cement in between the vertebrae . I am taking morphine at the moment due to the pain, and have to sleep on our sofa upright, as I can't lie down..
All the very best.
Ann
Xxx
Hello Peter
Sorry about the late reply, my computer decided to give up on me and have just got it sorted.
I am glad that they found your MM early., that has to be a good thing, if nothing else.
So are you saying that you had CTD for about 5-6 months before you were ready for SCT. How do they decide when you are ready for the SCT?
This is all new to me, somethings I understand and something's go right over my head (maybe because I am blonde or maybe because i am in my Autumn years ha! )
To answer your question, yes they are planning on SCT , but not sure when this will be at present. How did you get on with it and how long we're you in hospital, I do understand that everybody is different, so it will vary for everyone.
Best wishes
Ann
Xx
Hi Ann
A warm welcome to this great Forum, I see you have made yourself comfy already That's Good 😀
I wish you well in your road to remission, looks like you might be going down the road I travelled, My first defence was CTD then onto Stem Cell Transplant, I have 5 sessions of CTD then waited for a spot to have my SCT and all this was in 2009, I site here now in remission and drug free am pleased to say.
Good Luck with it Ann
Love Tom Onwards and Upwards xx
Hi David
Many thanks for your reply, it is nice to get mail back.
Sorry to hear that your MM has returned. How long did they take to diagnose what you had in the first place? They first told me that the pain was shingles then it was kidney stones and after many trips back to the doctors they found MM .
At such a young age of 70 years and four months, I am sure that you will be ok, going for the second round, how did you feel when they told you it had come back? If you don't mind me asking. Also what are they doing about your bone pain , I take morphine in the morning and evening and now waiting for treatment to have some sort of cement between my vertebrae, to help with pain.
Wishing you all the best
Ann
Xx
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