This topic contains 7 replies, has 3 voices, and was last updated by 
Wink 7 years, 8 months ago.
Hi everyone i am new to this site but was diagnosed with mm in 2003 and had the relapsed in april 2012, no need to explain the effects etc of mm,but find this site so reassuring for us.
On the 22/10/12 i attended the (Patient and Family)Myeloma Infoday program in birmingham at the hilton metro pole hotel,and was pleased as to the effort and intrest showed by its organisers,this was a day well spent and noted the fact all attended had the same common intrests and concerns but with hope.MM effect all of us with its treatment and side effects in various ways and some of us has not experience relapse and its side effect but i can say for me this was not very good as my vertrae brae from the neck had caused some compression that had effected my legs which made me unable to stand or walk properly,since then i have had radiotheraphy with little suscess and is now taking Gabapentin 300mg and asusal hoping for the best.
Wishing everyone all the very best in your treatments and living with MM.
(Wink)
Hi Winston
Welcome to the club,2003 until 2012,that not bad going at all,sad you are of remission but you gave it a good run,what did you first treatment consist of. 7 years which in it.s self gives everyone on here some hope.
I would have thought as they new you were in a situation,that they new it would come back,how did it get to the point of compression on the spine ,I ask this as I am aware that when it comes back it does not always show how much is going on in the bone marrow,the check up are on the bloods plus Kappa Light Chains.I would be interested to hear how your mm relapse was discovered.
I do think there are lots of new treatment in the pipeline,and I hope you manage to get some movement back,as the spine gets strengthened.Eve
Hi Eve,thank you for your letter RE Relapse MM.From your observations i see you are seeking some information on medication and the cause of Relapse.
And as one who is not medically trained and do not want to mislead or give the wrong information from the outset i will inform you to the best of my knowledge and memory and if there is something you are not too sure of as to what i have said perhaps you may from the various helpful Myeloma sites or your hospital medical team get the required information as rquired.
Back in 2003 when i was diagnosed with MM (multiple myeloma)i had my stem cell harvested and,this was treated for what was required to me being isolated and given Chemotheraphy combined with Steroids intravenously,i was also in isolation during this treatment.
Myeloma as you are aware is a cancer that effect the bone and the blood,and hence the problem we face is we are treated for the cancer but there are side effects,and we are prone to relapse some time after treatment ,and in my case as myeloma affected the bones i experience some severe pains at the back of the neck this year that went down my back that then went to my legs that effected the movement in my legs.
As this was happening i suspected a relapse from the myeloma and went to the hospital and explained what was happening and ask for an MRI scan and the result was that it shown the Vitrabrae at the back of the neck was compressing down causing the pains and other problems.
I have had Radiotheraphy since and that has helped but has not rectify the problems relating to my walking,but i am coping with MM and will encourage all that has just been diagnosed with this cancer,those like us who has been through the various treatments to take one day at a time and look forward to your treatment being effective in controlling your systoms.
I hope this is of some benefit to you.
Hi Winston
No not much help,I am more interested about the run up,because I am assured,the bloods,will be the first marker,so how did you get in the position of compression on the spine???,as I said they should have discovered you going out of remission,I have my own reasons for asking,can you help.
Winston!
We met at the Birmingham Infoday. Sat at the same table for lunch (and very nice it was too!)
I was sorry to hear you'd relapsed after such a long time but you're an inspiration. I'm quite a negative thinker and need to hear about more people like yourself, who've done well from their first transplant.
I had my transplant in January of this year and came shockingly close to losing my life but I got through it. Last year was tough with the chemo. This year has been awful until a month or 2 ago when I began to feel like me again and the problems I was having (too many to list) seemed to sort themselves.
I'm not without pain but on the whole, a lot better. Just recently though I've had awful neck pain. I thought this was muscular and due to my pillows or something but it hasn't eased. I had xrays at my last review appointment and after reading your post, will be phoning for results tomorrow. It's quite worrying. My bloods are good. I found out 2 days before the Infoday that I was actually in remission now. That's great for my very negative head but I still worry. Walking about for any length of time makes me feel like I have a terrible headache as I'm trying my best to stand straight and look normal. I need to get this sorted.
The Infoday was geared very much towards new, recently diagnosed patients or approaching treatment I agree but it did make me feel like there is hope for relapsing patients. Keep on at your doctors, Winston. They'll get you sorted I'm sure.
Was lovely to meet you.
Hang in there,
Sharon x
[b]Hi Sharon M,sorry i was unable to reply sooner due my computer having a long holiday (Technical problems)but its going well now.
Thanks for your good wishes as i do the same to you and all the others with this illness,i remember meeting you at the Bham Info day and i am glad i attended that meeting because since i have made some effort in doing some reading on this MM,dont be negetive on yourself always think posetive and if you can afford it, have a cruise or a good break from home and try enjoy what you do to keep your mind always active.
I notice you had some traumatic experience after Chemo,thats one side effect along with pains because our bodies can take so much,hence after my relapse i had Velcade that seems to have worked well but this medication was discussed at length with my doctor as my Paraprotien level had gone from 4 to 8 so at the moment i am keeping everything cross so as i wont need Chemo because of the previous experience.
I note you are having head aches when walking please let let your doctor know about this and be careful if you are driving,i am hoping you can talk to some one close to share some anxiety that we MM patient have at times.
So nice hearing from you,take care and remember to keep your mind active.
(wink) [/b]
Hi Eve so sorry i was unable to reply due to my computer having one of its time off (technical issues) from my memory my Paraprotien level was 4 then went to 8 in two months,but as i am so petrified on hospital visits remembering anything is just imposible so this information is the best of my recollection.Sorry i cant be more helpful and hope you are coping.
Take care.
(wink)
Hi Sharon just came across your post and so sad I haven’t seen it before, nevertheless I do hope you are well and has made good progress and is still hanging on and is not negative towards yourself, and I do remember you.
You must remember the family of myeloma patience is large and we all could write a book on our experience ,so take of yourself.
PS just thought I check the forum and saw your post.
The topic ‘Relapsed MM’ is closed to new replies.
