[davidbrParticipant]

Hi I feel you need to give yourself more time and be patient. You have been through a very hard on your body experience.

it took me 6 months to get better and get my taste buds working again, not feeling tired and pain to subside. I still feel I was not completely normal until a year later.

Give you body time to recover.

I have had 2 SCT’s one in 2013 and one this year in January. The 2nd one went better and I have recovered sooner but it has not been until recently I feel fully fit with my body working fine again. I still feel quite tired at times in the day and need to lay down for a rest.

Regards David

[davidbrParticipant]

Hi Jan

In my humble opinion you should not be worried. My Paraproteins have gone from 15-45 in the last 3 years but my consultant at my last 3 reviews is saying “you are cured and all Myeloma is gone”.

As I understand it, it is a ratio between your Paraproteins and kappa-light-chains which matter. If I have that wrong hopefully someone will explain this correctly.

When I was diagnosed my Paraproteins were over 2500 so a low figure of 5-6 in my humble opinion is nothing to be worried about.

Hope this helps. If you are concerned maybe you could speak to you husbands consultant for reasurrance.

Best Regards David

 

• This reply was modified 7 years, 1 month ago by  davidbr.

[davidbrParticipant]

Hi Mervyn

I am 3.5 years post SCT and am doing well with Paraproteins at 45 (was over 4000 pre SCT). While I was there have my stem cells harvested I spoke to a man who said it was 8 years since his 1st SCT.

Not sure it answers your question but my limited experience.

I am very positive about my cancel. Gave me the chance to retire early which was great, I always hated work. Gave me the chance to smell the flowers. I have recently gone back to fishing, what can be better than sitting by a lake all day. It was worth getting cancel for all that. Now I just have to keep the DHSS as bay.

Wish you well for the future.

Best Wishes David

[davidbrParticipant]

My thoughs are with you at this troubled time. Wish I could help in some small way but can only wish you well.

Regards David

[davidbrParticipant]

Wish You well Andy

Regards Davidbr

[davidbrParticipant]

Hi Brian

I had my SCT in Dec 2013 after being diagnosed in May 2013 and I have never looked back. It took 9 months to a year to recover but recover I have. On my last vist to my consultant in June this year he atually said I was cured. He was quotting an America medical paper which was saying they had cases of Myloma patients who had been in total remission since their SCT. This has been my experience I am now in total remission with all mesurments normal. I am just doing a blood test every 3months with 6 monthly vists.

I am obviously suffering all the after effects like 2 crushed vertabra and back pain. And things I did in the past can now seem quite difficult although I am not sure is this is old age (I am 61) or the Myeloma SCT treatment which have caused this. Plus I get lots of strange little joint pains etc.

But I am almost back to normal what ever normal is.

Hope this helps and the SCT goes well.

Best Regards David

[davidbrParticipant]

Hi Jan

This is what happened to me but it may not be medically correct but hope it helps. Do not be afraid it is all doable and at most it is unpleasant. You will be given all the help you need as all the SCT staff are the best in the world.

0. They install a Hickman line which is a tube in to a main artery by your neck.
1. You are given a high dose Chemo infusion to kill off your stem cell.
2. You have to inject yourself over a week with a stem cell stimulant to produce new stem cells.
3. Provided you have made enough new stem cells you have a stem cell harvest which involves being hooked up to a machine which takes blood from one arm syphons off the stem cells and returns it via the other. They need to collect 8,000,000 stem cells which took 2 days for me.
4. When a bed becomes available you go in for your SCT.
5. They give you a very high dose Chemo infusion to kill off all your stem cells. This will make you ill. You will loose your hair. You will loose you sense of taste and everything will taste of cardboard and you won’t want to eat anything. Take some sweets you like to suck as you will get a dry mouth. Sore throat is a problem so do all they tell you with the mouth washes. take lots of clean underwear you will need it.
6. After 24 hours they give you back 4,000,000 of your stem cells via infusion.
7. You have to stay isolated in one room for up to 4 weeks. Mine took 18 days before I was deemed fit enough to go home.
8. You will be week and frail for the next 6 months but take it easy and spoil yourself with anything you fancy and only do what you want to. Steer clear of young children as you will be prone to infection. I spent a week in hospital twice because of chest infections.

I am now 2 years 6 months post SCT and feeling great. I spoke to a man while in for my harvest and he had 7 years free from Myeloma and 10 years between SCT is possible now.

Don’t worry about it, it is all OK and at worst unpleasant. Take each step at a time and you will get through it.

Again this is all what happened to me from personal experience. It may not be medically correct so maybe someone else will fill in the details.

Best of luck and hope all goes well.

Best Regards David

• This reply was modified 8 years, 6 months ago by  davidbr.

[davidbrParticipant]

Hi Andy
Just got back from Kefalonia on Sunday went to the 9Muses Hotel Skala (Recommend it a lovely hotel). Had a lovely holiday with perfect temperatures and lots of sun. The Spring flowers on Kefalonia were amazing and so pretty. We have been 6 times now and I keep saying can we move there but my wife won’t leave our 2 boys and family’s.

Hope the PP’s stay low. I am 2 1/2 years post SCT and still in remission but seeing my consultant 8th June for a 6th month report. So hopefully he will have good news.

Best Regards David

• This reply was modified 8 years, 6 months ago by  davidbr.

[davidbrParticipant]

Hi Compass007

I just wanted to wish you well and I am sure all the thoughts of the Myeloma UK subscribers are with you.

Some days I actually forget that I have Myeloma especially when I am with my Grandchildren. My wife does not understand why I don’t feel sorry for myself. But being able to do what I want and not what someone else wants is the best gift from this horrible cancer.

Best regards David

[davidbrParticipant]

Hi compass007

Hope all goes well for you and wish you well for the future. I am 2 years post SCT and doing well. Only have a 6 monthly check-up at hospital now. Just have some aches and pains, don’t know if that is my age (61) or Myeloma. Still not working and enjoying my early retirement, but have to have some good come out of this cancer. Living on the governments kindness at present, I have a review in June so I hope they are going to be kind to me.

So hoping you have a successful SCT and get some long remission time.

Best Regards

[davidbrParticipant]

Dino

Hope all is going well have you got a sore throat yet?

You surprise me saying you have been outside. I spent 18 days on the ward. They did move me around to 3 different rooms as midway I was infectious. But I was not allowed out of my room apart from that and couldn’t even see the sky.

I was only allowed well adult visitors and they had to wear hats, aprons, gloves and shoe covers.

When I finally escaped it was very strange outside in the fresh air. They had to give me training to walk up and down stairs.

Regards David

[davidbrParticipant]

Hi Dino and Andrew

Let us know how you are doing. I am sure I am not the only one interested in your progress. Also my thoughts are very much with you as this discussion has reminded me what you are going through.

Best Wishes David

[davidbrParticipant]

Hi Dino

When I was in having my stem cell harvest I spoke to a nice man who was up for his 2nd SCT after 7 years. So I am hoping for a few more years without treatment. I was 58 (2013) when diagnosed and nearly 59 when I had my SCT. My consultant has always said I am in partial remission as my counts have never been zero.

My counts must have been very low at SCT but I can’t remember what they were. I only had 5 courses of Chemo before SCT.

Hope all goes well for you. The worse things I found was the sore throat and no appetite.

Best Regards David

[davidbrParticipant]

Hi Graeme

Hope all goes well for you. It is not pleasant but very doable. I am 2 years post SCT and getting stronger everyday.

Best Regards David

[davidbrParticipant]

Hi Susie

I found your post very interesting. I am on my 18th Zometa and have not noticed many problems before. But now thinking about it the last 2 have been terrible.

After my previous infusion I had a very sharp pain in my Right hip if turning quickly or sneezing. It made traveling in a car very painful when the car went over speed bumps or holes in the road.

After my latest Zometa on 2nd June I had flu like systoms for a couple days. Then until now I have had very bad pain again in my right hip which makes sleeping and walking difficult. I also feel because of the pain I don’t want to do anything and everything is an effort. I tend to work through it and go for my usual 2 mile walk but then I suffer for it later and get very stiff and painfully when I rest.

As I have been having Zometa for 2 years now and the next one will be my final one I am now wondering if I should cancel.

Best Regards

David

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