[bandityogaParticipant]

Has anyone had a SCT when either FLC or paraprotiens have been outside the normal range?

Maureen

[dickbParticipant]

Hi Maureen,

I had my SCT when my IgG was still at 36 I believe. I had 6 courses of Velcade that only managed to drop the PP from 52 down to 36. Because I am in Germany the rule that seems to exist in the NHS that you can’t have an SCT unless your PP is below 10, doesn’t happen here. After a chat with my consultant, she believed that the Velcade would not reduce the PP’s any further and that an SCT was the only option. You have to remember that I had 1 course of PAD that caused very high enzyme levels in my Liver and that Revlimid was ruled out because of the side effects to the Liver. On that basis, I didn’t have many options.

The SCT only managed to reduce my IgG to 23 and that for the last year it has remained at that level. I am however drug free and have quarterly blood checks, so far so good. I also accept that the Holy Grail of full remission is unlikely to happen but I am doing OK and that’s good enough.

[jane-wrenchParticipant]

Hi there – when I had my first SCT in 1996 my kappa free light chains were 5500! Way above normal!

 

[bandityogaParticipant]

Hi Jane

How much remission did you get?

You are a survivor and have given us hope.

Maureen x

[jane-wrenchParticipant]

Hi again-that SCT put me into partial stable remission – I have amyloidosis too – and 5 years later was in a lot of pain – and although the free light chains hadn’t gone up, I  had a second SCT in 2001- not sure if it was really necessary but it put me into full remission which lasted for 10 years – then the light chains started to increase slowly but surely – when they reached 850 in April 2012 I started on velcade dex and cyclophosphamide – then after a few months thalidomide instead of cyclophosphamide – which brought the light chains right down – I stopped treatment in August 2014- and am in remission at the moment- fingers crossed as I have check up next week! But have had the disease nearly 20 years – and going strong at the moment! Good luck with it all xx

[beetlejuice54321Participant]

Hi maureen

i had a sct in October 2013 with my para protein level at about 25, and the bone marrow at 5%. However I am an unusual case as the myeloma had collected in my lymph nodes rather than the bone marrow and I was told that the sct was the only chance I had of survival, as when the myeloma is outside the bone marrow it acts much more quickly to bring the end sooner.

Given i I am typing here today the sct worked very well, not completely, but got me 90% of the way to remission, which was finally achieved a full year later (after vtd treatment).

So so you can have sct outside of the normal ranges, but I guess it depends on the case.

Good luck.

 

[bandityogaParticipant]

We saw the consultant today and Ian is scheduled to go into hospital on 6 March for high dose cyclophosphamide then GCF injections and hoping to harvest a week later. Should have SCT soon after. Hoping that this will give him remission.

Maureen x

[andygParticipant]

Hi Maureen.

The rule I was told at the beginning of my myeloma journey was that before a SCT you needed at least a 50% reduction in PPs levels before it would be considered. I suppose that applies to the other ways myeloma is measured too.

There is no “normal range” though the closer to zero the better as been stated in this tread already good results can be achieved whatever the starting point.

Has Ian been checked to see the condition of his bone marrow? Sometimes getting the 2 million cells can be problematic especially after several courses of chemo.

I don’t envy Ian having high dose Cyclophosamide it is a horrible drug, well it was for me, though he’ll only have it for a short time I had it for 30 months! though not at the dose Ian will be getting.

I hope every thing goes as planned and Ian can spend the summer recovering and relaxing looking forward to a long period drug free.

Every day is a gift.

Andy xx

[bandityogaParticipant]

Hi Andy

Ian’s FLC were 695, 2 weeks ago and revel8mid not controlling the MM. Hopefully the FLC will come down after the cyclophosphamide. He will be admitted next Thursday for 2 days, unfortunately it falls on my son’s 40th birthday but this is more important.

He hasn’t had his bone marrow checked as consultant at The Beatson said there was ways and means to increase stem cells. Plixifor being one of them.

I only hope it will be worth it and Ian will get a good remission . I’m a bit scared to be honest.

Hope you are keeping well and you will also be considered for a SCT soon.

Take care.

Maureen x

[stanley-1960Participant]

Hi, Maureen,

I went into SCT with FLC 104 after 4 courses of CTD. My consultant said that the cyclo priming equivalent of 3 courses of standard treatment 1200mm would sort it out. The only side effect i had was a big red head for a couple of hours (my kids did laugh during the skype phone call) and the weight gain due to the fluids. The plerixafor or trade name Mozobil is a wonderful drug. I had to go in at 23:00hrs for the injection the night before harvesting( they don’t trust you to do it because of the cost) . My final harvest total was 11.2 million one session 6 hours.

I hope Ian has a successful priming session,harvest and SCT with long remission.

All the best,

Stanley

[VickiParticipant]

Hi Maureen

Colin had 750 light chains when he had SCT and got to full remission. It is possible. It’s just important to remember that each person is different. Ian has come along way andnthismis the big chance 🙂 it was lovely to see the post from the lady who has had mm since 1996. What wonderful encouragement.

Wishing you all the best

Vicki and colin x

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