This topic contains 17 replies, has 5 voices, and was last updated by 
PeterJames 11 years, 5 months ago.
Hi everyone. My mum had her transplant In August 2012 and was then randomised to no drugs. All of her bloods have been great but when we went on Monday the levels of whatever they measure had risen to a 2. I can't help but feel so upset and disappointed. Is this the beginning of it coming back? ? I worry that she will be put on maintenance drugs at some point as I hear scary things about revlimid . Has anyone else experienced the same after their transplant? ?
Rach Xxx
Hi Rach
I had my SCT on 17th Jan at the Manchester Christie
In for only sixteen days, blood test at Christie mid March revealed no discernible pp, said I was I good full remission
Then referred back to my local BMI near Blackburn who diagnosed me luckily very early on then did CDT
My Heamatologist there did a blood test mid April to establish a data base, two weeks later I got result , pp now at 3
All other blood readings , thirty plus were all good, general health pretty good apart from two small lesions in hip which are a bit painful
Heamatologist said she was not concerned & would retest in two months
She said the pp would float up & down a bit
She said other bloods would not be so good if the beast was back, also I would not feel so healthy
I must admit to being a bit shocked to be told the pp was at three , perhaps deluding myself that I would not hear the word for a long while !
But I guess we have to get used to these ups & downs & get on with life
Perhaps after a few of the monitoring s I will see a pattern
All the best
Peter
Hi Rach
It's hard but do not panic it takes time plus blood test to see if its on the rise,2 sounds a nice number,has your mum been on medication or been off colour,it all effects the blood results,its never just about blood.
I also think its a natural reaction because your mums had a SCT its not the end of worrying ,I some times think its worst as before you have a positive frame of mind,your mum is going to get through this attitude and its a good thing,its got her this far!!!!, then it takes time to wind down and stop worrying,look at Tom very relaxed but still worries when the bloods come round.
The time to worry is when there is a steady increase,enjoy and plan what time you have now with mum,do a spar day,hit the shops,show mum she's the best mum in the world. No one knows when it will come back.Eve
Hi Peter,
I am in the same sort of position. My PP before transplant was less than 2. Since the transplant it has been about 2.3/2.4. Consultant said that in only about 15% of cases does the level go to zero. I have since done a bit of asking round friends and I know of one man who has had PP levels varying between 5 and 12 for several years. Stability is what the medics appear to be looking for in the majority of patients.
Chris
Hi Peter,
I am in the same sort of position. My PP before transplant was less than 2. Since the transplant it has been about 2.3/2.4. Consultant said that in only about 15% of cases does the level go to zero. I have since done a bit of asking round friends and I know of one man who has had PP levels varying between 5 and 12 for several years. Stability is what the medics appear to be looking for in the majority of patients.
Chris
Hi Chris
Thanks for your info
I guess having got to zero , it would have been nice to stay there for a while
How do you feel now as you are a few weeks ahead of me
Stability is what we all want ,but I was relieved that all my other tests on my bloods were ok & I feel pretty good
My main concern is now to get fitter , not that I was an athlete per SCT
Peter
Hi Peter,
I am feeling very well thank you. Tingly toes can be annoying and I find that I get indigestion if I stop taking Omeprazole. Pain refelected down into my ribs from my crushed vertebrae can be an issue but the MRI scan revealed that my back muscles were out of alignment and I am finding that walking while consciously keeping tall is a big help.
I feel pretty exhausted after 6 miles though. Consultant emphasised that I should do as much low impact exercise as possible to strengthen my bones because the chemo, as well as the MM, will have weakened them.
The UHSM haematology consultant also mentioned that he did not bother with BMB at low PP as it was very difficult to get a good count.
What are you doing on the fitness front?
Chris
Hi Chris
I have Tingly toes more on RHS than left
I had epidural last Mon to kill off nerve pain , specialist thinks it is scar tissue from several ops , nothing to do with mm
At least the three vertebrae above L5 are going nowhere , all bolted together, most likely I will have two per year
If I could walk six miles I would give myself a medal !
Two small leasions on my left hip are the only bone damage , bit painful but hoping zometa will help , just had first dose.
We do try to walk each day , often at Lytham. Trafford Centre sometimes in darkest winter ! Ie , no hills.
I also do some stretching / bending exercises on getting up
In next few days I will also go back to swimming at local hotel , used to do three times per week , even using small fitness room walking machine plus few minutes on cross trainer . Those were the days !
Also throttled work down to almost nothing , which is a novel experience
Peter
Hi Peter,
Sorry to hear that exercising those bones that have been attacked by the wretched myeloma is proving problematic. Reduction in exercise seems to be a common problem with MM patients. I suppose I should count myself lucky that I can do as much as I do.
Also interesting the difference in approaches between consultants. I started Zometa on the day I was diagnosed and have been told that it will continue for 2 years. I wonder why the delay in your case.
Chris
Hi Peter,
I am feeling very well thank you. Tingly toes can be annoying and I find that I get indigestion if I stop taking Omeprazole. Pain refelected down into my ribs from my crushed vertebrae can be an issue but the MRI scan revealed that my back muscles were out of alignment and I am finding that walking while consciously keeping tall is a big help.
I feel pretty exhausted after 6 miles though. Consultant emphasised that I should do as much low impact exercise as possible to strengthen my bones because the chemo, as well as the MM, will have weakened them.
The UHSM haematology consultant also mentioned that he did not bother with BMB at low PP as it was very difficult to get a good count.
What are you doing on the fitness front?
Chris
Hi Peter
I compressed at least 4 vertebrae last year and with the bone pain of active myeloma plus the side effects of velcade and chemo, I wasn't very active for almost a year. (I used to be very active – running 10kms several times a week.)
As a result I have had quite pronounced kyphosis. The pain in my vertebrae was reduced a lot by vertebraplasty. But I too have all sorts of reflected pain – in my neck, my abdomen etc.
My physio gave me some simple exercises to help open up various muscles, move my shoulders backwards and arch my spine. I'm also doing lots of lying on my back on a hard floor, and regular swimming. Between them these are making a big difference – and making "walking tall" easier. I've been doing the exercises for a month so far. My physio told me it needs 3 months – 6 weeks to unlearn bad posture, and 6 more to relearn good posture.
Hope that helps. I could give you more details on the exercises I do, if you would like. Might be easier by email?
Oops – meant to address that to Chris
Hi Alex,
I have had no luck getting physic on the NHS and have now resorted to Pilates, beginning last week. It would be great to have details of the exercises you have been given. I am glad that they seem to be helping you walk better.
Being used to intense physical activity, I found the sudden loss of it one of the really hard things to bear about this wretched disease.
Chris
Hi Alex
I would be very interested in the details of your exercises
I am also going back to swimming next week
E mail : peter@peterjstevenson.co.uk
Thanks
Peter
Hi Chris
I think my main problem is the scar tissue from previous spinal ops ( not mm related )
The irritates the nerves coming out of L5 , therefore no further ops possible or wanted
They have a least cured the main , what I call electric shocks which went down both legs
Since epidural two weeks ago , a lot of the minor electric shocks have gone , I'm hoping this lasts some months , before I have another one
I need to experiment how far I can walk with the two small lesions in my hip, but swimming next week.
I had one dose of Zometa per stem harvest , then consultant said they would stop until three months after my SCT
My Christie Consultant said they did not usually do post SCT BMB because one bone might be clear , whereas another might have some pp in it. I was also told by Ellen at UK Myeloma that the mathalan can be active in your system for up to six months post SCT
Have you been to the local support group meetings
Peter
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