[charlie67Participant]

Yes, it is 1.30 in the morning! It’s the Dex! So I thought I’d make use of this time and ask a question that is rattling around in my head and along with the Dex is keeping me awake.  I had a clinic appointment yesterday. A quick recap, I’ve had 3 months of CVD, amd then 6 weeks ago my meds were changed because my para proteins had reach plateaux at 29.  I was moved on to VTD.  After one cycle of these new meds my PPs are now down to 8. Great news. My consultant now wants to wait until I plateaux again, when this happens, I will then have one more cycle and then get a break and then off to SCT.

So here’s my question, did anyone ever consider not having the SCT?  Does anyone know of anyone who opted not to have it.  I am compiling a long list of questions for my consultant when I next see her, but that’s not going to be for another 6 weeks (I do have another clinic appoint in 3 weeks but she’s away for that one so I will be seeing A Another Doc, and will really be just getting another PP reading).  So to further open up my question, I know someone who’s PPs were at 14 when they had their SCT, and after they were 12 and are now plateaux at 14. Which makes me wonder what was the value of the SCT.  Did anyone else go into SCT and come out with the same PP levels.  I’m asking these questions because it came up at the end of my clinic appointment (raised by my Mum who was with me) that was there an option not to have SCT, to which my consultant said yes, it’s my choice every step of the way, although SCT is the recommended and understood best practice in treating MM.

I’ve probably got another 3 cycles of VTD which is another 9 weeks so I have plenty of time to ruminate, research and reach a decision.  I plan on ringing the nurses at Myeloma UK tomorrow to see if they can through some light on my question.

Right time to try and sleep! 😴😀

 

 

[dickbParticipant]

Hi there,

I might fit into your criteria. I had SCT after 6 courses of VCD, my IgG dropped from 52 down to 36 and then leveled out. As I don’t live in the UK, there was no criteria of proteins to be below a certain level before SCT. Post SCT my IgG dropped to 24 and stayed there for just over a year. I am back on treatment again because since Christmas they have started to move up. I had a chat with my consultant last month as they want me to consider an Allo SCT.

I have looked into it and spoken to my GP and have come to the conclusion that it’s only worth doing as a last resort. Survival rate is between 50 and 80% depending on fitness, staging and age. There are no guarantees that it will work anyway. Recovery period is longer and more dangerous compared to an Auto SCT. As for having another Auto SCT, that for me will be a better option, however I have been warned that every SCT reduces the body’s ability to cope with maybe another SCT if needed. My consultant suggested that I skip a 2nd Auto and just go for an Allo – assuming that a suitable donor can be found of course.

Ultimately there are no guarantees. There are so many factors that need to be taken into account and the risks increase as treatment goes on. My own conclusion is to wait until the present round of treatment is finished and then reassess, to go for a 2nd Auto before considering an Allo and then review all treatments available then as well as those likely to come on stream. The mortality rate for Allo can make it seem like playing Russian Roulette to me.

[finnParticipant]

Hi

Unless you do not mind taking drugs continuously (maintainance), it is recommended to have SCT as it deepens your response to the induction therapy and should delay relapse. Like you, I had VCD treatment first which dropped my PP values from 60 to 30. After that, I had quite a few cycles of Lenalidomide and Dex that lowered my PPs to under 10, and SCT did not change this value practically at all. However, I could be drug free after SCT and I have had the same PP value for about two years now. Of course, this can change anytime, but so far I have really enjoyed being drug free. Best of luck with it all

[tobygoParticipant]

Hi Charlie

I hope that you are well and treatment is working. What was your conclusion on the SCT?

I have just finished my 5th cycle of VTD and will start my 6th and last cycle on Tuesday. The suggested treatment is then the SCT later in the year and like you were back in June, I am beginning to assess my options.

Many thanks Toby

[duskParticipant]

Dear Charlie, I do not know what you have decided regarding SCT. But the research suggests younger people like you who have suitable induction followed by SCT survive longer. Very few choose not to have an SCT unless their health status suggests a higher risk than normal.

In general, it is known that remissions are longer after an SCT, but not always for everyone. Secondly they offer a period of remission free of drugs, which most would welcome. However, nowadays many specialists use drug maintenance regimes after SCT, at least for those who do not reach complete responses after it.

Myeloma is a complex disease and our clinicians cannot predict outcomes as a result because we have not got the tests for individually based treatments yet. An SCT on average appears to give 18 months or so of remission, but some people get much less and others much much more. A number of younger / fitter people when they relapse can have a second SCT or may be offered allo transplants. so this prolongs survival too.

Not easy decisions. Having an SCT would put you within the category of the majority who do this when offered SCT. Talk to your treating consultant and transplant doctor to  voice your concerns. They know your health and medical situation. Then when you make a decision, do not look back.  Good luck.

Dusk

 

[hcp1Participant]

Hi Charlie

I am about to finish my fifth and final cycle of VTD this week before a SCT which is likely to be late October. I see my consultant this Thursday and one of the questions I had planned to ask him was what the options are if I chose not to have the transplant. I was diagnosed in April this year and had 3500 lambda light chains and my bone marrow biopsy showed 55% abnormal plasma cells. The light chains have now come down to 291 and I guess I will have another bone marrow biopsy to measure the abnormal plasma cells before the transplant.  I  have never been given PP readings so can’t compare. I must admit I still don’t understand all the different ways in which Myeloma presents. I still feel it is all so new yet here I am getting ready to prepare for a SCT. All a bit scary.

Although I want to understand all the options available to me I am sure I will go ahead with the SCT as it has been explained that this gives a longer and deeper remission. I was going to ask about the length of remission gained but from Dusks post and from what I have read it does look as if the average is 18 months to two years. Much shorter than I at first realised. Part of me thinks is it worth going through for a relatively short remission?  But surely it is – to be drug free will be wonderful and there is always the possibility that we could be one of the ones who go into remission for 5/10 plus years! I know it’s impossible to predict how each persons Myeloma will develop and progress. This is one of the most frustrating aspects for me.

I wish you and Toby all the best and as I appear to be ahead of you both in treatment I will keep you posted with any new information that comes my way.

Helen

[charlie67Participant]

Hi Toby and Helen and Dusk

great to hear from you all.  Here’s where I’m at… I finished my fifth and final VTD on 22nd July, and achieved zero para proteins and minus 5% plasma cells.  Yay, break out the champagne! So even more the question to transplant or not raised its head.  So in mid August I’m referred to a new consultant who will oversea the transplant process and so I ask him, what will the transplant achieve with my levels at ‘normal’.  He explained it very well and has helped me feel so much more confident that this is the right thing to do.  He said imagin an iceberg, everything that is known and understood about myeloma and how to treat it, is what sits above the water.  A lot of what is yet to be understood about the disease is the iceberg below the water. So even though the treatment has got my levels to ‘normal’, the iceberg still lurks below the water, what the transplant does is pushes the disease even further below the water line and so achieving a deeper remission.  So onward and upward, transplant here I come.  I meet again with my transplant consultant on Thursday and expect to get a time frame and dates, but definitely not before the 19th sept, I’ve got my best friends 40th that day and she’d kill (long before myeloma) if I missed it!!

I have to say, having fairly sailed through three months of VCD and then three months of VTD with minimal side effects, the first two weeks being drug free I felt pretty rubbish, that took me by surprise.  The come down from the drugs maybe.   I’m now on a number of supplements to get me up to full strength ready for the transplant.

Charlie xx

 

[hcp1Participant]

Hi Charlie

The iceberg is a great way to explain it!

I hope your appointment goes well on Thursday and you get to enjoy your friends birthday celebrations! I’m hoping that my treatment will allow me to celebrate my daughters 21st birthday on October 8th. I think the timing should be just right.

Where are you having your treatment? I will have the stem cell harvest at Southmead, Bristol and then the transplant in Cheltenham. Just wondered if you were from this area?

take care

Helen

 

 

[charlie67Participant]

Hi Helen, looks like we could be local ish, my harvest will be in Oxford and then the transplant at GWH Swindon.  I’m just outside Marlborough.  Where are you?

[tobygoParticipant]

Hi Helen and Charlie

Great news on zero paraprotiens Charlie – that must be very welcome. I don’t think that I am going to get there even after 6 cycles of VTD – I seems to be plateauing at somewhere between 1 and 2 which is I guess pretty low having started at 30. I have yet to understand practically what this means!

I hope that the appointment goes well on Thursday. Post how it goes if you are comfortable with doing that but no pressure. Like Helen, I do like the iceberg analogy; it really helps to visualise what the process is achieving. I am beginning to learn how individual MM is!

I also hope that your appointment goes well on Thursday Helen. I too find the unpredictability one of the hardest things to cope with. Will remission be 6 months or 15 years!

I find all of the numbers a little confusing but I had thought that the light chains and para proteins were pretty much the same thing? I might well be wrong.

Many thanks both for your thoughts.

Toby

 

[dinoParticipant]

I collapsed with kidney injury inMarchto be told that I had Myelom, my PP found was 38.

I started CDT in early April and the count went down from 38 to 9 to 5 to 3 to 1 to 0. I was advised that only 20% hit zero PP. I Have seen Addenbrookes consultant (I have been treated at Peterborough hospital) to discuss STC and was advised that it would give 12 months extra remission on top of whatever the CDT would give. I thought about not having the STC until I was told the remission without is on average 18 months. This changed my mind and I have the procedure end of Oct. MM appears to be different for everyone therefore take my information lightly as I don’t think the Doctors really know enough yet. Good luck on whatever you decide to do.

I have put a question on the forum regards to SCT and others response to the treatment. Please go read the replies all positive to SCT.

[hcp1Participant]

Hi all

I had my appointment with the consultant last Thursday and am having a bone marrow biopsy on Tuesday. SCT is still planned for mid to late October.

When I asked about the benefits of SCT and the average length of remission I was told that the data that suggests an average of 18 months is already out of date as much of the treatment has changed! It is hoped that longer remissions will be achieved but yet again I was reminded that everyone is different and it is impossible to predict individual outcomes. I was told not to get too hung up on numbers (which I find hard not to) as what is more important is how well you respond to treatment.

Charlie – I live near Broadway, north of Cheltenham.  A little less localish?! Do you have a date now for your stem cell harvest?

Toby – from what I understand the paraprotein is the whole structure which includes the heavy chain and the two light chains (kappa and lambda). I have free lambda light chains.  Still don’t perfectly understand it all but I guess it’s the bone marrow biopsy that gives the best information on how much disease is still present and therefore how much it has reduced as a result of treatment.

All the best

Helen

 

 

[suzettefoxParticipant]

Hi all

I can see you are all approaching your SCT soon, just like to say all the best to you and I hope it goes well.    I had mine November 14,  as you say Helen, everyone is different, I have chatted with a lot of patients at the marsden when on hospital visits and we all vary in our symptoms before and after SCT.  I have had encouraging news when I have met patients that have been in remission for many years, and sadly the opposit but are now on another plan.  I do take comfort from that.  My SCT went well, be prepared for tiredness and not really wanting to do anything for a good few months, I was told of this but from one who was always on the go before didn’t think it would happen to me.  I am no longer on any myeloma drugs just pain relief, which unfortunately for me I am still in a lot of pain in my back.

I wish you all well for your treatments.

suzette

[HelenRParticipant]

Hello,

I was on a trial that deferred SCT if you got a good response (called PADIMAC). I responded immediately to the treatment (which was velcade, dex, doxurubicin, oddly known as PAD). After 1 cycle all my results were totally normal – I’m light chain only. This was from being ISS stage 3, lots of bone damage, some kidney and liver damage, throwing up with hypercalcaemia, bone marrow 90% cellularity, pneumonia etc. My kappa light chains were something like 1300. They came within range and right down to 0 I think. I had to do 4 cycles of PAD which was the minimum, so that was June to Sept October 2012, and a stem cell harvest in October 2012, enough for two SCTs. I did a Minimal Residual Disease test on the trial which was MRD negative – ie really no evidence they could find. I just read the preliminary results and only 4% of people out of 150+ had this. Back to work, back to life, a lot to process but had a good year, travelled, etc etc. I was obviously hoping for 3-5 years, 10 years… and that hope is very helpful so hang onto it, I’ve met plenty of people like that!

I however relapsed around September/December 2013 – kappa lambda ration went out of range and wrong ratio, up to 26, 59… not high at all but BMB and MRI skeletal survey confirmed it was back, and starting to cause lesions. I faffed around a bit looking at trials and second opinion, couldn’t get onto a trial so I did VTD and then did my SCT June 2014. I wasn’t quite in CR before the SCT, although VTD did help. I was in CR afterwards, so it definitely did something extra. Again, I had a really good spell being drug free (which personally I value a lot). And then my numbers started creeping up in April (nobody worried but I could see the trend) and a BMB in August was 30% again, so I have started CRD. I’m considering doing an allo as I have two excellent matches. I could do a second SCT but the general advice is a second one doesn’t last as long – although of course there are exceptions. I think the figures for ‘mini allos’ aren’t so bad – reduced intensity conditioning or RIC. But I still feel like I need to understand more as it’s such a huge decision, GVHD etc to cope with possibly. It’s a very personal choice. But as we know (especially with NICE etc) it does get scary when you feel like you are using up options.

But leaving aside me, I think you are definitely right to do the SCT. I’ve no idea whether I’d have got a longer remission if I’d done mine at the start – I suspect maybe I’d still be at more or less the same point now, but probably I’d have had a good 18 months to 2 years in one go, maybe then a second SCT. But who knows. I think I have a very fast-moving myeloma (has responded to treatment fast but comes back fairly fast, although it does at least get a drug-free remission which is not to be sneezed at I realise). I think it’s always better to assume you’ll be one of the lucky ones until you find out anything which says otherwise… No point in ruining the good times worrying about the bad times, you end up going through it all multiple times (worrying in advance and then whenever it finally happens). Once is enough! Easier said than done, of course. I definitely think it really helped me to get into sCR and CR, it meant that I had a good 6 months or so each time when the numbers were really right down and although they roots may have been growing (the iceberg was creaking?) it was all at such a tiny amount that even doubling or whatever wasn’t detectible… but once it’s a bit higher then it moves faster. But there are tons of people who have a very different profile – they dont’t ever get into CR but PR or VGPR, but have longer remissions, and a sort of gradual slow creep when they come out of remission.

Hope that is of some help! I’m also on Dex…. 😉
Really must to go bed though…
Hx

[tobygoParticipant]

Thanks Helen – good luck for the bone marrow on Tuesday. It all begins to make more sense, slowly, doesn’t it!

Toby

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