[dinoParticipant]

Hi all.

I had a a back back last year an into this year.In March I collapsed with kidney injury and was rushed into hopital. The kidneys were functioning at 18% and I was then advised thaat this injury was secondary to having Myeloma – what a shock.

Peterborough City Hospital were great, the kidneys recovering enough for me to be released just before Good Friday. Within a week I had seen the oncologist and a week later I was on treatment. At this time my Myeloma was 38mg/l of blood.

during this time I picked up a lung infection in the lower lobe that was treated by PCH and the GP where antibiotics resolved the issue.

So good news – the myeloma is now in remission after 5 cycles of CDT and the count is 0mg/l. I have been advised that all of my other statistics are in the normal range and the kidneys back to 90%.

During the treatment I suffered the neuropathy in fingers and toes, I think my ankles swelled lightly, after the 4 days of steroids I had flatulence and pains in the abdomin plus being hyper. There were occasions when I did not drive due to a fuzziness in the head, like having a couple of pints without the expense.

So to the point – I have now taken a decision to go for stem cell therapy and have been advised that the recovery in hospital is 3-4 weeks and then another 8 weeks tto get over the fatigue.

I would like to get other peoples experiences on the SCT and recovery period.

FYI – I am a 56 yr old male.

Many thanks for reading the post and any responses,

Graeme

[graemeandrewarthaParticipant]

Hi Graeme,

I completed my SCT last November and at present am in remission but still taking relevant drugs as the immune system improves.

SCT can be very painful and unpleasant but is very doable. Mine was 3 weeks exactly in Southampton Unit with approx 6 weeks after at home before feeling really well enough to do anything.

It is in my opinion worth it but be prepared and read up on it. See if anyone else from Peterborough has been there to get the benefits of the SCT unit.

There are other sections on here worth reading but if you would like some more info from my side the please let me know.

Regards

Graeme

[mervyn53Participant]

Dear Graeme

I was taken into Addenbrookes in Cambridge in late Novemeber with 3 crushed vertebrae and paraproteins at 74. After 6 cycles of Velcade and dexis and cyclophosphamide paraproteins were down to 5, but Dr. Crawley advised SCT.

I had the SCT on 16 July and they let me out 16 days later. Yes, I felt rough while I was there and I had thought of putting SCT off until pps started to go up again, but Dr. Crawley advised to do it because they wanted to hit it hard. He knows more about it than me !

I have lost my hair and I am still working to get my strength back  but 40 days after SCT I went to clinic and was told my MM is now ‘undetectable’.

I am 65.  You decide !

Best wishes

Mervyn

 

[davidainsdaleParticipant]

Hello Graeme

I was diagnosed at 59 years old and am now 18 months post stem cell and feeling better than ever.

Everyone’s experience seems to be different, but for me it was quite a while before the fatigue started to wear off. I was OK pottering around the house, light house work etc but no stamina. From reading other posts and articles it seems to be that the younger and fitter you are to start with the quicker you recover.

Myeloma UK has a buddy system whereby you can speak to another patient who has been through it – I found that chatting with someone else invaluable before making up my mind. There is also the Myeloma UK helpline and the infoguide on SCT was a really good source of information. I would recommend making contact with one of the local support groups if there is one in your area or attending one of the patient information days where you can talk to others who have been through similar treatment or chat with themedical experts in an informal atmosphere.

Good luck and hope all goes well.

David

[tobygoParticipant]

Hi Graeme

Thanks for this post.

I am going through a similar thought process at the minute. I am mid-way through my 6th round of VTD having been diagnosed in January and needing to have some radiotherapy on my pelvis to treat a large tumor that had appeared there.

However, all of those treatments are coming to a close and the next step in this journey is the SCT. It looks like that I am only going to achieve a ‘very good partial remission’ with my PP down 1.5 or so (down from 35).

As such, it is good to see all of the replies to your post. From this thread and other areas of the site, it does seem as though the opinion is firmly in favour of having the SCT done.

I wish you well with your thought process.

Toby

[petergParticipant]

Hi Graeme

Like yourself I was diagnosed October 27th 2014 after going to Sunderland city hospital in a ambulance after three vertebrae decided to explode whilst getting off toilet “ouch” along with smashed ribs . All bad news I know but there is light at the end of treatment .

I was put on myeloma trial x1 and only took four course of chemo to get me into remission fantastic stuff . Next was the stem cell transplant first stage a doddle harvesting the stem cells in Freeman hospital in Newcastle . Two weeks later the big day back to Freeman to start melphan conditioning yes a little uncomfortable eating that many ice lollies late at night but damn worth it as four months after transplant I feel brand new and with a few adjustments in life with the back my life as a little normality again which is worth a lot to us myeloma patients .

Please don’t be fooled a few weeks after transplant it’s a little rough and uncomfortable but the end result is everyone’s goal normality in our lives

 

 

Go for it I say like you I’m only 50 and have a little bit life back …… Good luck

[christaylorParticipant]

Hi Graeme,   I had my SCT in March this year in Kings College Hospital London, for me it was tough however managed to get through it, Like the posts say ice lollies and yogurts for the throat and sleep don’t worry about how much. There were a number of blood transfusions and Platlets transfusions even after being discharged from hospital. I think recovery is really individual in fitness levels, age, etc etc but it’s nice when after 100 days you go for the post SCT bone marrow biopsy then told that you’ve had VGPR very good partial response. For me almost 6 months later  can potter around doing little jobs, walking for about 30 minutes or so. But I get really fatigued come tea time so go to bed, next week I start the repair stage when I go into Medway for spine vertibrea repairs, then sometime later am due to have my legs pinned which hopefully will reduce the amount of pain I am in. So Graeme good luck with SCT and the future I wish you well go for it.

Regards CT.

 

[kevinParticipant]

Hello Graeme,

I have had 2 SCT now the first in 2007 which like Chris was at Kings in London as I am also from the Medway area and the second at Kings & London Bridge in 2013. Like you both were preceded with CDT. I was 49 when I had my first one. Everyone seems to have different experiences and all I could add to this is that each of my SCT was different. One ok and the other not quite as good. I was in hospital for about 2 weeks for each of them. The hardest thing that I found was trying to pass the time and the loss of appetite. The time issue was probably my fault as I am not a good patient. Although other things were different this was common to both. The care I received on both occasions was excellent. Each time I achieved a full remission. I think from memory it took a couple of months from coming out to start to get back to how I was then another couple of months to feel ok again. Fatigue was the main issue but also feeling weak. As of today I am not on any medication and see my consultant every 6 months.
Good luck and best wishes for your SCT
Regards
Kevin

[dinoParticipant]

I would like to thank all those that have replied to my post. It is reassuring to learn how each of you managed during and after your treatment. AlthoughI will still go through with the treatment the 4% mortality sits a little heavy although so does the average 18 months remission if I just felt on CDT. I will add to the forum either during or after the treatment hopefully to assist others following on the same path. Thanks again for your replies.

[cartdawParticipant]

Hi dino I am going into hospital for my stem cell transplant tomorrow.  not looking forward to it as there are many different reviews on it and everyone has a different story to tell but it is part of the recommended treatment and I feel I have to see it through.  I was diagnosed with myeloma last year and commenced 6 cycles of CDT in March this year.  My paraproteins started at 29 before treatment and are now undetectable but my light chains are still 900 but they were 7,000 before treatment.  good luck x   Dawn

[tobygoParticipant]

Hi Dawn – good luck for tomorrow. Wishing you all the best for a speedy recovery.

Toby

[chrismac67Participant]

Hi everyone. I was diagnosed in February this year following a surgical procedure after which I had kidney problems. PPs down to 14 from 87 and I’m due to start SCT 28th September.  I’m not looking forward to it, most anxious I’ve felt about anything since diagnosis. It is reassuring to read other people’s experiences. I am a 48 year old mother of 3 children, the youngest of which is only 4, so I feel that, despite my fears, I must go ahead with this to have the best chance of being around as long as possible for my children and husband. Having r2ad this forum I can go in informed and knowing that I will feel pretty rubbish for a while. Good Luck everyone going through this and here’s hoping for a positive outcome. Xxx

[dinoParticipant]

I went to the Oxford info day and had great conversations with those who have had SCT and those that give it. This has helped a lot for my forthcoming SCT. As I am in remission I managed to have a weeks holiday in York- certainly recommended.

And to the crux, tomorrow blood test, Tuesday chemo and the start of the injections and 8th the harvest. What a fun packed 9 days I will be having and fitting work around it. I now have a date of 4th Nov for the procedure and hopefully fully fit before Xmas.

I will add to this ‘blog’ as I go. All for now, Graeme

[graham-cParticipant]

Needless to say the forum doesn’t need spam posts peddling dubious foreign prescription services.

–SPAM DETAILS REMOVED–

Respectable organisations don’t hide their identity behind a privacy protection service and the website was created less than a month ago.

This website, which has been in business for 7 years,

No it hasn’t

— Edit by WebTeam

Hi Graham
Thanks for the heads up on the spam. I’ve removed the details from your post now as I’ve cleaned up the junk. If you see any more please report it directly to webteam@myeloma.org.uk and I will kill it as quickly as possible.
Regards
Stuart
Myeloma UK WebTeam

• This reply was modified 9 years, 1 month ago by  graham-c.
• This reply was modified 9 years, 1 month ago by  webteam.
• This reply was modified 9 years, 1 month ago by  webteam.

[natdarke1Participant]

My mum has light chain myeloma and is in the process of the SCT. This is day 8 since cells were transplanted and she’s quite poorly, very weak, unable to eat, has had quite bad sickness and yesterday the diarrhoea started. We were told this could happen but hard to fully prepare yourself. I am hoping and praying once the GCSF injections start tomorrow we may begin to see an improvement. She’s extremely exhausted and is pretty much sleeping all the time for the last 2 days. I have read a lot of stories on SCT but not many seem to go into minute detail with regards to how patients are day by day. It would be good to hear from others who have been similar? Can’t see her being discharged anytime soon the way she is at present.

Many thanks and good luck to everyone x

[Author]

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