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
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
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
Hello again Pauls (and Rebecca),
I’m sorry for the formatting gobbledegook that was in my last post. I’m away from home and my laptop at the moment, and am using this ipad, which isn’t suited to posts on this website. So sorry about that. I don’t see a full readout of what I post until after submission and I hope this post is clearer.
Looking at Dr Libby’s detail from the myeloma working party, it is obviously acedemically correct, but there seems a bit of a gap to this and what is actually done by consultants in the nhs. I’m assuming you’re treated at an nhs patient?
Rebecca is correct in what she said in her post, and it’s not just light chain results that are the determining factor, but are read in conjunction with the particular consultants view of other possible physical difficulties. CRAB (calcium, renal, anemia and bone damage). Your serological response (test results from your blood test for your involved LC, that is lambda) , are more important if all other clinical issues are tested as okay. And I’m assuming that’s why you raised your questions in the first place.
There is the rub. To conform with the definition of relapse (ie requiring further treatment intervention) you would need to convince your medical advisor to perform the two tests within the two month period, to meet the professional requirements. And good luck with that!
But just looking at these tnt (time to next treatment) tests, I puzzle over the fact that if I have a whole series of two monthly tests and each time the FLC levels increase by say 190mg/L then whilst they don’t meet the relapse 200mg/L trigger level, then if they remained increasing at 190 after each two months, then within the space of a year they would be reaching a level of around 1000mg/L without me being in a relapse condition.
Obviously this is a very idealised picture, but with LCs varying between tests, each time, I still have an issue with the concept. To me, it all stems from there doesn’t appear to be an absolute FLC level that defines a relapse after one or more previous treatments. So if a limit was set at say 1000 mg/L then everyone would clearly understand this, if no other physical problems existed. Obviously if a patients LC level was in the tens of thousands (like mine was) then it’s pretty obvious that something needs urgently doing. But I suspect there are many patients with LC levels from 26 to say 1000 that wonder if new treatment is necessary? If anyone has discovered this holy grail LC number that defines a relapse, please could they say.
Very best regards,
peter
Hello again Paul’s,
Below is an extract that kind of deals with your questions:
<span style=”background-color: rgba(255, 255, 255, 0);”>”a significant paraprotein relapse is defined as … an increase in the absolute levels of … involved FLC level by more than or equal to 20 mg/dL (plus an abnormal FLC ratio) in 2 consecutive measurements separated by less than or equal to 2 months.”</span>
this is from the International Myeloma Working Group. But it’ s not that helpful in some respects. I’m assuming that you live in the UK and that your lambda LC measurements are in mg/L.
Involve ve lcs are lambda in your case. It simply means that if you have a blood test on 12/9, then provided you have another one before 12/11, then if your LCs have increased by more than 200mg/L then you’re technically relapsed. But this assumes all other issues like bones, anaemia, calcium and renal are fine.
Im sending this from my iPad, which doesn’t like this www. Above, Involve ve should read involved. Sry for other formatting problems. It’s hard to correct earlier auto inserts once a block of text has been typed
best of luck,
peter
Hi,
is your LC problem lambda or kappa? And what are the units set against your measurements? For example mg/litre, or mg/dL?
peter
Hello Hammy,
I had a full eight cycles of VTD (although I had to stop the thalidomide since it gave me high temps and palpitations at night). The treatment lasted July ’15 to Feb ’16. I had no sickness, but terrible fatigue and shivers. And generally felt shaky and weak.
Unfortunately, I had a residual after effect of a bad tummy (had to hang a loo roll round my neck) up until a few weeks back. This problem lasted six months, and is only now becoming manageable. The vtd treatment was however effective in bringing down, drastically, my lambda light chain levels. Although they are starting to creep up again.
Each mm patients response to treatment seems very variable. Hopefully other people posting will give you further information.
Best wishes to you and your husband.
Peter
Hello Cheryl,
Not sure I can help much, but when I was diagnosed 12 months ago, I had both bone and kidney biopsies, a full skeletal xray and I think an MRI on the spine, but according to the hospital records, I never had the latter!
Last month I had another full skeletal xray and an MRI on the spine. At my consultant mtg a couple of weeks later, she told me that they can compare the two sets of xrays to investigate any further bone damage, but it wasn’t a NICE requirement to initially have an MRI (at diagnosis) so she said they have nothing to ‘benchmark to’ regarding the spine MRI, but of course now, they have the recent MRI picture to compare with – for future MRIs.
I have no idea about the drug you mentioned.
Not sure I’ve helped much, but very best wishes for the future.
Peter
Hello Andy,
That’s great if they show up lesions. I’ve had mri’s for that… I don’t suppose you know which scan gives the most detail.
Thanks for your post, and best regards,
peter
Hiya Brian,
Hope you find it useful.
Pete
Hello again Brian,
I read that the world famous Mayo Clinic (U.S) completed a study of 511 non-sct patients, and 723 sct patients from 2006 to 2014.
Their findings look pretty optimistic!
If you get a second treatment started (at first relapse for non sct patients) more than a year since you were diagnosed, then the average period of this first remission is 30.2 months (nearly 3 years). This average is the ‘median average’, so some patients will get first remission even longer, and some, unfortunately shorter.
And I know it’s a bit difficult to talk about, but for those who had no sct, and for those who had, and for both groups who did not relapse in the first year, then the overall survival rates are years and years!! In fact there appears only to be about a one to two year advantage if you undergo an sct.
Hope I’ve read these figs right, I can send you the web link if you’re interested.
Peter
Good morning Annette,
Thanks for your post, and yes I have randomly come across myeloma beacon in the past, but will now look again with much added interest.
Many thanks again, and very best wishes to you and your incredible recovery.
Peter
Hello again Annette,
And happy birthday for yesterday. And thank you for your latest post…
I’m no medical expert, for I think what you said is pretty near the mark. MM is so individual, and one of the things that define us is our gene make-up, and the things that can go wrong in this area, like additions, deletions and translocations. Early on in my diagnosis the hospital performed a “gene analysis”, so I know the potential problems!
Problem is matching the gene mutations to the particular drug therapy. Speaking to the hospital experts, this issue seems still to be bit of a “black art”, and seemingly based on trial and error, so I expect before any confidence can be placed — it’ll be the subject of numerous trials and the necessary amassing of lots of data (those “stats” again).
In my case my VDT treatment crashed the LCs from 11500 down to single figures! So innocently, one might say that this treatment matched my mutated gene array exactly. My last cycle was 7 months ago, but the little LC Devils are now on the rise again… So probably not. And of course the nasty little MM cells obey Darwin, and adapt to the latest killer drugs that hit them. But I agree, the gene treatments do look very promising (from my layman’s perspective).
For me, sct is out of the question. Too many risks. And as I said before, your record, with no sct, is incredible! Well done again. And frankly, if it were me I would stick to your current regime which is obviously working wonders.
Very best wishes,
peter
Hello Annette,
That is brilliant. Absolutely brilliant to have done so well. Again, it’s a very impudent question to ask a lady, but I’m 67, and could I ask if you are much younger??
Also, was your success following one or more scts? And did you have cycle breaks between ongoing treatments, or is it just continuous maintenance doses?
I reckon you’re going to qualify as a mm record breaker!
best wishes,
peter
Hello again Maureen,
Thanks for your reply. One would think that a crucial bit of data regarding the LC level at which treatment re-starts would be carved in stone, in some NICE www backwater!! But evidently not. Leaving this to individual consultants is probably due to the other problems with mm, like calcium, anaemia and bones. Again it’s the problem of the individuality of this nasty disease.
We think mm is very bad, and it is… But one of our close friends has lung and liver cancer and this week we saw him and he now has four additional tumours affecting his brain. These will affect his sight and balance. It’s truly horrible to see how he’s deteriorated over the last month. The reason I say this is because he had a pet scan two weeks ago. He told me that he has a radio active infusion, then the scan, and it shows up lump tumours yellow. He said he saw the results and he glowed like a yellow Christmas tree.
I don’t know about these scans, I’ve had a ct scan, but not pet. I understand that pet scans are good at showing up lump tumours, but didn’t realise they are good for mm?
very best wishes again, to you and your husband,
Peter
