[lizfParticipant]

Hi Karl
I was like you in 2011 had bad back and it showed spinal collapse at L5 and had kyphoplasty and spinal fusion L4-S1 followed by 5 weeks radiotherapy. Then watch and wait 3/12 till Dec 2014 when it tested its ugly head. My PP had started at 8 and grad went up over time. I then had 4 months chemo followed by SCT June 2015 I have since been in remission. Long may it last. If you have any questions just ask. I had hoped it wouldn’t progress but alas it did.
I hope you are getting on alright.
Liz

[lizfParticipant]

Hi I had a plasmacytoma of L5 with collapse of said vertebrae in February 2011. Treated with kyphoplasty spinal fusion L4-S1 and 5 weeks radiotherapy. Been on 2 monthly bloods and watch and wait till Oct 2014 when I had an increase in back ache paraproteins had increased slowly overtime. On diagnosis pp was 8 and after MRI scan in Oct found more spinal activity of mm with pp of 39. I was then started on bis phosphorites monthly and myeloma X1 trial on CCRD. After first cycle pp down to 11 and after 5 cycles down to 2. I then went on to stem cell transplant in July this year which wasn’t as bad as I had expected and now described yesterday after 100 day marrow biopsy to have MRD minimal residual disease which is a good indicator of longer remission. I am 52 married with 3 boys and I am back to normal activities and play tennis twice a week and now feel normal. Now able to plan ahead and put mm aside apart from 2 monthly reviews. I hope this helps.
Liz

[lizfParticipant]

Hi Ian
I had a SCt at SGH on 26th June 2015 and I have to say it wasn’t nearly as bad as I thought it would be.I was diagnosed Feb2011 with collapsed L5 and had Kyphoplasty and Spinal Fusion in Mar 2011 at QA followed by radiotherapy. I then was reviewed 2 monthly on the watch and wait and started treatment last Nov when I had further back ache with a PP 39. I was on myeloma X1 trial of CCRD for 5 cycles and went for harvest with PP 2. Hickman line in and I waited nearly 4 weeks for a bed on the unit at SGH. I was fit prior playing tennis and walking the dog on the beach daily and am 52.
On admission it all worked like clockwork the infusions,high dose chemo and transplant 48 hrs later. I did have a sore throat and intestines felt a bit sick on solid food and had diarrhoea but as soon as your cells start regrafting you then feel better.I spiked a temp one night and was rapidly put on antibiotics had a few bags of platelets when they were low but that was all. I went in healthy eating well doing exercises with equipment I brought in for about a week then felt more tired off food and tea/ coffee occasionally sick then cells perked up and I then started to feel better.I was in for 16 days all over Wimbledon and it wasn’t that bad being in the room as I had 16 visitors plus my family and the nurses are in and out day and night. The staff were all lovely and all knew their job and I felt totally at ease and self cared throughout getting showered,dressed hair and make up on every day.
On discharge I felt ready to go and fit and we walked on the beach that afternoon with my dog and I haven’t looked back. I went straight back into my role as mother and wife and have had no complications at all. I only cut the last bit of my hair last week as although I lost some in Hosp I can out with a full head of hair which I had cut into a shorter bob. Apart from a dry mouth decreased taste and appetite I felt quite normal and my bloods have come back to near normal and I am doing all my normal things and started playing tennis again. I even have a new puppy to increase my workload. I can’t almost believe I have been thro the Stem cell transplant and come out the other side quite easily but discussed this with others on sat at QA myeloma support group and others felt the same. I know we are all different but you tend to get worried by other comments on the forum. Certainly for me it wasn’t as bad as I thought.ask away if you want any other advice
Liz F

[lizfParticipant]

Dear Brian
I am coming in today for a Dr review I could pop my head round the door on C6 as I have something to give them. Would you be up for a very brief visit.
Liz

[lizfParticipant]

I have just come out of SGH last week after waiting nearly a month to be admitted. I too have had a stem cell transplant and sailed through it aged 52. I did get nausea,tiredness,sore throat and oesophagus and a bit of diarrhoea but it wasn’t as bad as I expected. I spiked a temperature which was immediately assessed with blood tests,blood cultures and other swabs and treated with antibiotics. All symptoms improved as my blood counts came up. I was discharged on day 13 and came out with a head of hair although slightly thinner on top. I have had my shoulder length fair hair cut into a shorter bob. The staff at SGH were all fantastic and nothing was too much trouble. Now home besides having a reduced appetite slightly altered taste and a dry mouth I feel cmpltly normal and not overly tired. I am back to normal activities and daily walks on the beach with my cocker spaniel.
Now planning my life as after having 5 months of chemo with 37 trips to SGH 4 years of 2 monthly reviews time to get on with normal life. I wanted this to be a positive experience of stem cell transplant as I had worried myself by other’s experiences on the forum. I was told by a fellow patient who had theirs 6 months ago it was not as bad as she thought and I carried that with me and I exercised regularly in my small room to maintain my fitness.
A truly positive experience but I know we are different
Regards Liz

[lizfParticipant]

Hi Charlotte.

I had my kyphoplasty and spinal fusion done at the same time 3 weeks 3 days after my MRI found the plasmacytoma and fractured L5. Back pain went instantly on awaking apart from surgical soreness. My back aches now particularly on flexion activities but I still play tennis. It feels well supported and I can touch my toes. On CT scan there is some loosening of the screws which may be related to the radiotherapy after surgery but I am not doing anything about this unless I have to (this may account for the backache). I hope this answers your questions.

Liz

[lizfParticipant]

Hi Charlotte
I had plasmacytoma L5 Feb 2011 Kyphoplasty and spinal fusion L4-S1 and 5 weeks radiotherapy but no drug treatment. Now on watch and wait review every 2 months. Are your paraprotein levels very low? mine are hovering around 21. Advised no treatments unless CRAB signs.
Keep in touch
Liz

[lizfParticipant]

Hi Richie
I had exactly the same as you aged 48 Plasmacytoma diaganosed Feb 2011 collapsed L5 vertebrae. 3 weeks 3 days MRI Scan to kyphoplasty and spinal fusion L4-S1 followed by 5 weeks radiotherapy. Not allowed to do much apart from physio for 3 months. Now back to playing tennis although I still have some backache on flexion activities. Ever since I have been on 2 monthly reviews with blood tests and bone marrow biopsy last Nov. Finding it difficult to live with the watch and wait scenario. Feel like a living timebomb of not knowing what is ahead. feel free to ask anything. Hope your back is settling down.
Liz

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