[hnapParticipant]

You  will gather I am new to this forum and  I am amazed at the amount of knowledge that has been gleaned by other people.  I don’t have this type of knowledge as my admission to the scene was via A&E.  My condition was getting worse and no assistance was forthcoming from GP and unable  to walk and in great pain NHS24 advised A&E.  After attending A&E  it was found that I had a crushed/collapsed vertebrae and was asked had I been in a road accident as it appeared to be a trauma case.  It thereafter took a lot of scans etc to find out what was wrong.  It was thought they had found secondary cancer and time was then spent on finding out the primary source before I could be treated.  This proved to be unfounded but eventually is was diagnosed as a blood cancer after a biopsy had been done (multiple myeloma).   Lesions were found found in the  skull, ribs, pelvis, spine and right thigh.  Immediately  radiotherapy was  commenced on the spine.  Which I will say has, after a number of months, Led to me progressing from a zimmer  frame and my crutches to being able to walk in the house for short  distances without either.  My treatment had to be interrupted at very short notice for an operation for a pin/nailing to be inserted in my right thigh before the femur crumbled and this was a real set back as I lost a lot of blood and was then struggling with leaking wounds etc., and also trying to get my haemoglobin levels up and this took quite a while.  I am now at a crossroads and have to decide on an autologous stem cell transplant or go for what is called watch and wait as the MM seems now to be under control.  I feel very ignorant and on reading other posts realise that  I have very scant information and I am really pretty scared of what is in front of me.  I know that it is only me that can make the decision but I don’t feel I have much in the way of information to help me with this. I am on the Velcade treatment.  There does not seem to be enough information available to prove that there is any real advantage to going through with the transplant unless this information is available from a source that I don’t have.  Does anyone have any links for me to try?  I have still to meet with the Transplant Team, a Consultant and also a lady who has  had a transplant but my decision has to be made as my last dose of treatment which is cycle 6 is on Thursday after which I will meet with the consultant  and the lady who has undergone the transplant.  I need to have a list of questions to ask at his meeting on Thursday. I am waiting on the appointment letter to arrive with an appointment from the Transplant Team.

[annlynnParticipant]

so sorry for theway things have progressed for you i have had six months cdt treatment then stem cell transplant twoo year ago so in remmission at the minute i havent had half the treatment that you have had i hope rebbeca from this forum picks up your post she is a insperation to me and very knowledgeable about. mm. good luck . annlynne

[rebeccaRParticipant]

Hi there, You seem to have gained remission from velcade (I believe velcade is only offered to 8 cycles maxc I had the 8 cycles) and therefore, you can wait and be off treatment until you relapse or you can progress to SCT in the hope (but nothings guaranteed) for a deeper/longer remission. I was 51 yrs old. I was on velcade and dex only and this is not known for very long remissions – I was quoted 9-18 months max which was a big factor in my going the SCT route. You do not say your age or if you have other health complications which may make you not want to go down the SCT route. SCT is arduous and dependant on age ( I feel) can take up to 6 months to recover. I was back to full fitness and normal life again in 3 months or so.
The questions you need answering are, I believe:-
* From your bone marrow biopsy what are your cytogenics and risk factor? I was high risk and so very important to eradicate what I could of MM (high risk = more aggressive and possibly less remission time)
* What is your status now i.e. have you achieved complete remission on velcade or very good partial remission (indicating there is still room for improvement).
* What is there proposed treatment on relapse – is this a maintenance type drug (thalidomide or revlimid) that you will continue to be on until it no longer works (I felt too young/physically active to want to be on a maintenance type drug).
SCT is the gold standard treatment in this country but Mm is very individual so you go into it hoping for a better result but this is not guaranteed and for some it doesn’t work. I had 0.3% minimal residual disease before SCT and am still 0.3% MRD after it (due to high risk cytogenics it was hoped SCt would eradicate this but it didn’t). I will be 3 years post SCT this Xmas – did the SCT give me this much longer remission or would I be one of those individuals who would have bucked the “average” anyway? I don’t know and neither do they really because MM is very individual to you.
SCT is a very unpleasant procedure but it is doable – you will be in hospital 14 -20 days then back home for a slow and steady recovery. I have no known ill effects from the SCT and am very active. When I relapse I will be offered another one and I think I will probably do it all again in the hope of another long drug free remission. Do not be swayed for others when making this decision just make sure you have all the facts to hand and then decide how you best want to live your life. I might add I had kidney complications pre SCT and was give a 20% chance of not coming out of hospital after the SCT but I knew what I wanted and went for it – my husband did not want me to take this risk but as I explained at the time this is my life and my decision alone – you have to live the consequences of the decision made so you need to own it 100%.Luckily it all worked out well and I made the right choice at that time.
Good Luck

Rebecca

[deanParticipant]

Hi Rebecca

I hope you don’t mind me joining in this conversation. Did you get your fish test done on your first bone marrow byopsie?  My hospital didn’t do it. When I asked, they have just recently done the test from my second byopsie as I finished my induction treatment last month. Now getting ready for my stemcell transplant around November getting scared for that… My doctor said I’m in remission the average person being 18 month’s before I relpase if I don’t go for Sct. But how do I know I’m average if they didn’t do a fish test.. Glad to hear all is going well your end.

Regards Dean

[rebeccaRParticipant]

Hi Dean, Yes the test was done at diagnosis then one after induction to see what was left and 100 days after SCT. I guess when they do it after induction there are probably still pointers to what the MRD comprises – mine were still there so guess they are the hardest to get rid of and the ones to take notice of. Over time they mutate anyway and new ones spring up so guess some hospitals decide not to do it and save money at diagnosis – our treatment paths are pretty much standard and set for us anyway – it is just another piece of the jigsaw and guess they assume, if able, all patients will want an SCT. We are always bombarded with 2 key pieces of information – the “average” and then the fact that MM is so very individual. If you scout round the myeloma Beacon site you will find those who have had extremely long remissions and those who relapsed in a few months so I always try and remember I am not the average statistic but am unique – if you don’t think like this you will always be thinking your remissions nearing at end etc and this is a big enough mind game as it is. When diagnosed I met an elderly lady who had MM for 12 years and had not had an SCT – she initially had CDt and got 7 years – 4 years on the next treatment (can’t remember what that was) and was back to try the 2nd treatment again and it was working well. The more you are around MM the more success stories you will find and always remember the majority of posters are those undergoing treatment etc and needing support – those in long remissions are just getting on with their lives and putting MM on the backburner until it rears its head. As I am classed as high risk (based on the “ave” statistic) I was heartened to find someone who was high risk and had been in remission for 9 years – so I like to use these as my averages instead! The reason I went for SCT – even with the big risk factor for me – was because I didn’t want to be plagued with “what ifs” had I not taken the opportunity when I was fit enough to do so and also didn’t want to be counting down the average stat had I not had it. I felt SCT gave me the opportunity to hope that I will be one of the ones with a very long remission from SCT and hope, whilst devoid of all logic, goes a long way to remaining positive about it all. Another point to consider is that when we are given the average stat of relapsing on different protocols they are not broken down into the high, standard and low risk groups anyway. Don’t worry about the SCT for the first few days it can seem like a non event and then it’s pretty horrid – like any sickness – then its over and you are recovering. I took in with me a count down calendar – average stay is 14 – 16 days so I chose 16 and every night I crossed a day off (similar to prison I imagine) and even if I had a pretty grotty day when I crossed it off and was 1 day closer to home it always seemed doable – which it is. Take it one day at a time and keep your focus on the bigger picture and spend time planning treats in your recovery period. Good luck.

Rebecca

[peterlParticipant]

Hello hnap,

I completely understand your dilemma, related to the sct route.  You can read this website and other www’s and be completely confronted by differing stories:  you may hear of people not having an sct and being in remission (or plateauing with ‘constant but reasonably low’ level MM problems) for years.  And you’ll also hear stories of sct’ers similarly having ‘remission for years.

Unfortunately, it’s a fact that opposite outcomes to both the cases above is also true.  Remission for those who don’t have an sct and those who do, can also be short lived.  Also if a doctor quotes an average remission of 18 months if you don’t have an sct, it’s important to remember that this ‘average’ is a median value, or a middle value.  In other words there are just as many people in that particular cohort that relapse before 18 months as those that have remission times greater than 18 months.  Your genetic make-up (via a FISH test) may help in deciding the level of cell abnormality (therefore risk) that you have.  My very experienced consultant does use this information, but with caution – meaning that whatever the gene additions, deletions, translocations you have – the individual’s response to a particular line of treatment is more indicative of future outcomes, than being overly concerned about risk factors.  Although, it seems with MM —  it’s truly hard to be completely confident and predictive regarding  future ‘best treatments’ and it’s often the case that different drug cocktails can produce very different results.  So, I think, it’s a bit of a ‘trial and let’s see’ scenario.

If your concerned regarding your FISH test, I would ask your consultant to be definite regarding the results.  And also ask him/her what the likelihood is, of an sct procedure changing the gene abnormalities that you have?  I don’t know if there is a wealth of useful information available in this regard.  None of the people I’ve talked to say that the second FISH test (after an sct) shows any reduction in any of the abnormalities.  And of course since the MM cells seem to obey Darwin, and change and adapt to any new threats/treatments, it means that currently MM isn’t curable — YET.

So amidst these all rather difficult issues – what do you do?  If it were me, I would discuss with my consultant:

my current state of health and in that respect my suitability for an sct.  With that in mind, what the risks are associated with an sct?  And moreover, what the risks are if I don’t undergo the sct?  In both respects you could ask what the likely remission times in each case are?  But beware of the statistical minefield that surrounds MM — and that needs to be treated with caution (in my opinion).  You can also inquire regarding what the next treatment path would be if you had no sct.  What the drugs would be?  And in that way maybe build up some knowledge regarding their effectiveness.  You could also ask regarding a maintenance dose regime, (I assume you’ve had at least a ‘complete response’ so far?).

Lastly, whatever you decide, I’m sure it will be the right decision, and with all the new novel treatments around the corner, I believe there is much hope for optimism.  Very best wishes to you.

Peter

 

 

[hnapParticipant]

Thanks to you all for your responses to my dilemma which are very much appreciated.  I was a very active  63 year old, working full time, doing Yoga, Body Balance, Tai chi, Metafit and 2 Pilates classes a week,  also swimming  and I thought I had just,  overstretched  in one f the classes.  You have certainly given me some questions to put to my consultant as I have no knowledge of whether I  am high risk or  whether FISH Tests were done when my biopsy was done or even an expectation / timescale of remission and information on the alternative treatments.

Hopefully I will get the  answers required which will give me the confidence to make my decision.

 

Thanks to all

Hnap

 

 

[peterlParticipant]

Hi again Hnap,

I went on the myeloma beacon (U.S site as Rebecca recommended in an earlier post) – and copy this from their forum.  It’s another source of information, and because the U.S. has many more new cases of MM, it tends to carry a lot of information, and often, it seems, doctors chip in with their views.

So for what it’s worth, this is the copy:
<h3>Re: My first relapse experience</h3>
 
<p class=”author”>by Victor L on Thu Jun 30, 2016 2:31 am </p>
Hello JPC,

You are most kind to give these words of encouragement and I agree with you, these are the thoughts I have.

I compare the pros and cons. The survival advantage with transplant is not that great compared with using novel therapies, but the cost, in terms of undergoing a rather invasive procedure, is quite high. It takes many months to recover fully, and there is the increased risk of com­pli­ca­tions, secondary cancers, etc.

As you also mention, there is the strong evidence of huge progress in the new drugs being devel­oped which may eventually make the transplant virtually obsolete. Decisions!

Kind regards, my friend.

Maybe it might be worth looking there and build up your knowledge base to deal with your decision.  And just as in Myeloma.uk, for every view, there’s an alternative.

Good luck,

Peter

[rebeccaRParticipant]

Hi there – Just to add to Peters response whilst I love the myeloma beacon as it soooo informative – and mm’ers there seem positively to degree standard in their knowledge of our “chosen” subject you must be cautious to relate their experiences to here in the UK. SCT is no longer the gold standard of treatment in the US and that is because they have such a wealth of drugs available to all patients via insurance and they can use these in any combination they see fit to try which will also incorporate their cytogenic status- so with the advancement and ever increasing drug supply for the US citizens SCT is not necessarily the no.1 choice. Here, in the UK, we are a very poor relation and are treated as a “one fit suits all” of standard protocols unless we go on trials – which are also very limited in comparison and like myself, you can be ineligible for our trials for various reasons relating to the individual MM experience. The drugs used in the US will take for ever to get approval from NICE as they are always deemed too expensive – not enough stats to prove they benefit every patient – and we all know MM is so individual this works against us for approval of new drugs. No myeloma drugs in the cancer drug fund?..no surprise there. With limited treatments here SCT will remain the gold standard treatment as it helps saves the other limited drugs for a little while longer. I don’t want to sound l doom and gloomy about it but we must be aware but it is a recognised factor we do not get access to the latest drugs easily and for many of us we will miss out altogether due our time lag of approval status/willingness to dedicate the funding to such drugs. I would highly recommend everyone use the Beacon site for its wealth of knowledge but always be aware of the restrictions of access to individual treatment plans here in the UK.

Rebecca

[deanParticipant]

Hi Rebecca,

A very good point. I got your impression when I asked my Doctor “can I have my stemcell transplant later”..? Probably because I’m on the young side, the doctor looked at me in shock horror that I can even think like this & ask.. Anyway I’m going ahead with it but don’t hurt to ask but that’s when I realised,   I’m restricted here..

Anyway I had this discussion with Myeloma uk regarding the above & they said even though USA are ahead our survial rates are the same.. So who knows, all I know that MM causes alot of mind games as No one really knows even the experts. Also it’s amazing how some of the best MM doctors in the uk have gone to the USA now….

As you were telling me you are classed a ” high risk” I thought of a story I watched on you tube. There is a MM patient also high risk called Yelak Biru. He has now been living with a high risk MM for 23yrs never had a Sct. His choice. His MM always responds well to treatment even though it’s agresive. Have you heard his story?  So as you said ” every one is different & who really knows with MM… we just have to go with it regardless .

I should have my results from my fish test any day now, will be interesting to see what it comes back as..

All the best

Regards Dean

 

 

[rebeccaRParticipant]

Hi Dean, thanks for that story..I like it! Altho my genetics are classified as high risk it is always just a predictor due to the individuality. However my translocation 14:16 is seen in many kidney damaged patients (my light chains were only 1000 but they really stuck the boot in )- so I may be easy to treat but it causes maximum damage to the kidneys. The high risk status of this translocation (which was;’t classed as high risk a few years ago factor, I feel, is that my kidneys restrict treatment options/trials and therefore will finish me off ahead of my time but..we will see. If you delve into cytogenics there are profiles that are known to cause heavy bone damage in small numbers etc. also. All very interesting if it wasn’t so pertinent! After treatment I have always felt incredibly well and so to me the burden of MM is the total mind**** of it all and I always say and truly believe this is where our energies should be devoted – coping strategies and living life strategies. “Life is 10% what happens to you and 90% how you react to it”

Good luck
Rebecca

[peterlParticipant]

Hello all,

Thanks Rebecca for your text.  I worked for American and Canadian companies and took advantage of their premium healthcare schemes.  And I can absolutely assure you that they are not the cash cows that you might imagine.  They watch every $ they spend, and if you need, say an ankle MRI as I did, you have to obtain pre-authorisation before you can attend the centre.  If you fail to do this (in ignorance), you face paying the bill for the MRI team yourself.

The American drug companies make their money on volume (once the prototype drug is approved by the Federal Food and Drug Commission), and I suspect development claw-back times can be fairly quick for cancer drugs.  I’m also struggling a bit with what you say regarding scts not being standard, at the moment in the U.S.?  I’m pretty sure that the sct industry will ‘soon’ be overtaken by more novel drug cocktails — as the American said, that I quoted in my earlier post.  Late last year my consultant was on holiday and Ms Stevens (a senior consultant) was in her stead.  The conversation turned to scts, and she said, almost word for word, what the American said in his June ’16 post.  My wife and took this to mean that the sct superseding treatments would be universally available, and certainly not confined to our American cousins.  But of course who can tell what the NHS constraints will be in the future?

Dean:  Ms Stevens has left our hospital – not to go to the U.S – but to go into research in the U.K!

In terms of overall survival, the Americans understand that with all their novel drug combinations – there’s not a lot of difference currently, between sct and non sct survival rates. The Mayo clinic analysed 1072 patients (2006-2014), of which 511 had no scts and 561 did. For patients who didn’t relapse early, the sct-ers had a median survival of 134 months and the non sct-ers 110 months, and considering the possible after effects of the sct, and time to get over it, I suspect that’s why they are tending to shy away from the sct process, which is still very much the standard over there, as well as here.

But in the U.K. one has, at the moment, to play according to the rules, and that, for the time being, is an option for the established sct procedure, which certainly isn’t cheap.  And if you need to travel to another NHS Trust to have an sct (because yours doesn’t cater for it).  The responsibility for your well-being then lies with that ‘sct supplying Trust’, but the payments are transferred from the originating Trust for your treatment.  So it’s still a debit to your local Trust.

The reason I copied the American Beacon post (and thanks for that reference), was for people (like maybe hnap) who, for whatever reason can’t proceed with an sct — to show that an alternative may be forthcoming in the not too distant future?  I just wish I could second guess the future.

Best wishes to all…

Peter

 

 

[peterlParticipant]

Hello again Rebecca,

Sorry to come back so quick, but I’ve only just managed to read your very last post.  And yes, a t(14:16) is a difficult translocation to have, BUT: I’m not a doctor, and speaking to them, that know!  A lot does seem to depend on your initial response to treatment, and length of time before your first relapse.  I can’t remember from your earlier posts how long you’ve been in remission since your sct, but it was years I believe??

So this is a very good sign, and quoting ‘that U.S. Mayo Clinic’s analysis’ survival time (sorry to be blunt and straight to the point) is in the median order of 122 months.  Please note this from time of transplant;  so later amended notes push this up to 134 months, since sct’s could take place in the first 12 months.  There’s lies and those damned statistics again…

So whilst it’s good to know if you have tricky FISH test results, and certainly they need to be remembered —  pointing the way to treatments for say renal difficulties in the future — there are other post diagnosis tests that I think are much more important, like creatinine and GFR from simple blood tests in your case, and of course FLCs.  So I wouldn’t over-worry about your translocation, there’s not a lot you can do about it anyway – unless you can get multiple genes re-engineered or zapped completely!!  All your signs of progress seem to me ( a medical layman) to be first rate, and your progress so far would seem to me to point to good longevity.

Well done and best wishes to all….

Peter  P.S.  I note what you say about the degree level of discouse, of respondents on the Beacon website.  I have an Hons Deg in Physics — do you think they will welcome my posts to their community??  I think not; they don’t like to be challenged on their stats!

[rebeccaRParticipant]

Hi Peter, Yes I do believe it is how you react to treatment etc which has been good for me so far but am conscious, having read some recent posts on the beacon that only one mm clone is dominant at once and I do not think that was the translocations ones. On relapse the tricky translocation may then be the dominant and prove more difficult to treat…or it may not…which is why worry is waste of time/emotion! Re US SCT I was making the point that there is a move away from it being the “gold” standard of treatment in the US due to the other drugs option i.e. if you are eligible you do it almost automatically like in the UK.Peter with that degree you’ll fit right in – I absolutely love how much you learn from the various tommy toppers posters on any subject matter…tho I say this not with malice because it is so helpful from a learning point of view.

Rebecca

[deanParticipant]

Hi Rebecca

Just had our meeting with the team regarding my transplant. So much to take in that I got to the point where I didn’t want to take anymore ino in.. Due to a shortage of beds I was warned that when I have my chemo I will be in a open ward.. Not happy about dealing with bad sickness etc, would rather my own room for that, but it is what it is. Did you find the chemo sickness bad? They told me I will be in for 4 weeks if lucky then 3 weeks.. just hate this hanging around now, roll on November as I don’t want to be to ill for the kids at xmas… All the best & thanks again for your tips

Peter,  Yes it’s always interesting to get all different info approaches regarding MM. All the best Dean

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