Hello again 007,
Thanks for the post, and the encouraging news. Frankly, I think a lot depends on interpretation of the medical terms. I’m not sure which post I wrote, where I said my old retired GP had both mm and aggressive prostate cancer (cured) and that was ten years ago, and although after several mm treatment cycles — he’s still going strong. And the lady my kidney specialist told me about: diagnosed with mm in her mid seventies, and now 90, and still going strong!! I personally would say these are <i>cured , </i>but of course my interpretations don’t tally with that of the experts.
However, it’s extremely interesting what you say regarding allogeniec sct. And what your consultants said. Do you know whether the 70% fatality rate in the 3-5 year period is actually a direct result of the allo-sct, or is it because patients were in a fairly bad state before the sct, and their outcome would have been “dodgy” anyway?
BUt it’s got to be good news that patients after the sct have survived more than twenty years. Although strictly not cured — I personally would say they are.
Very best wishes and I’m sure whatever decision you make will be the correct one.
Peter
Hi Brian,
I was diagnosed with lambda LC mm exactly a year ago. I’m 67 now, wasn’t in great health and decided sct wasn’t for me. My GP ‘s dad has mm, and my retired GP had both mm and prostate cancer. That was ten yrs ago and he’s still going strong! There’s lots of mm experience in the practice, and in discussion with them and speaking to the medical/science brilliant staff on this website, I decided not to undergo the sct.
I asked the experts here, what the sct stats are. And here lies the damned difficulty with mm. It’s such an individual disease that broad statistics need to be treated carefully. However, in the absence of any information and at decision time, it’s the only thing we have. They told me that the average remission time for those undergoing sct is 18 months. Unfortunately, for some it’s much less, but fortunately for others it can go to 2 and 1/2 years, or even more.
So whilst it’s a very individual disease, it looks like patients with sct will fall somewhere in this distribution. In consultation with my hospital consultant, the after effects can go on for many months and there are certainly, possible serious side effects of secondary cancers. But having said that, some people just simply sail thru’ the sct with little apparent effects, and are up and about quickly. Others can take a year to get over it.
But I urge you to speak to your medical experts and seriously consider what they say.
Ive now been in ‘remission’ for 7 months. So the way I personally look at things: if the average remission time is 18 months and it took me 12 months to recover (down time) then I would have had 6 months up time — which I’m already beating. But as I was told, the sct effects on me could have been very difficult. And you may be completely different.
I had 8 cycles of VDT which brought my LCs down fro 11,500 to single figures. My last cycle was in Feb. however, the LCs are now on the rise, up to 117 recently. But no treatment is considered necessary and I’m on four months review. Which will have taken my remission period to 11 months.
As I said, I can only speak about my particular circumstances and yours may be completely different. I don’t know whether this helps your decision. Which is NOT a trivial one in my view. I don’t know about maintenance doses, but there was a very senior consultant that I saw when my one was on holiday. And was very keen on sct alternatives, and new drugs that are currently becoming available. Unfortunately she’s left the hospital to concentrate on mm research so I can’t ask her.
Very best of luck with your decision,
peter
Hello Kevin,
Well done, brilliant decisions… The exercise, fresh air and change of sceneries will undoubtedly be of great benefit.
Very best wishes,
Peter
Hello Maureen,
All round there seems to be some good and positive indications for Ian. The fact that he’s painless and his kidneys are ok, I would say are really good signs. And I can only echo what previous messages have said, ie it’s finding the right drug cocktail that suits Ian.
Unfortunately, the latter appears to be trial and error and individual in the extreme. So, I wouldn’t be too concerned if particular combinations appear to fail, it’s then onto the next options.
It would be interesting to know what the trends, or step increases in LCs trigger further treatments? If Ian’s LC trend increase by say 100, month on month, at what stage is it considered unacceptable? I don’t know if there are clinical guidelines regarding this? One would hope so, but it does seem to vary between individual consultant’s interpretation?
Very best wishes to you and Ian,
Peter
Hello again Chris,
i hope this post works. I’m on an iPad, and the first submit failed. If you get two posts, blame Apple. I’m sorry to hear about your unscheduled hospital session, but timing is everything, and yours, with your consultant, is excellent! I sometimes think the mental effects of such a surprise hospital stay can be worse than the physical problems. Last year I had 11 nights unscheduled stay in hospital,and frankly not nice, but we are where we are, and I guess it all has to be expected. The alternatives are not pleasant!
Sorry for being a bit thick, but I don’t quite understand what you meant related to the use of antibiotics? Again, I doubt if there’s any alternative, and they’re probably a very necessary evil.
I had my consultants mtg this morning. Unfortunately, the LCs are still on the climb (from 117), so it’s further tests I’m afraid. As my wife said, “it’s a bit of a life changer – even managing the tests, the calendar…” And with the side effects, I’m a bit of a walking pharmacy!
my prostate MRI didn’t quite go according to plan, because they couldn’t inject the contrast dye, because they were worried about further renal impairment. So it had to be done dry, and I await the results. Yep, I’m combatting difficulties now on three fronts: the MM, the residual side effects of the chemo, and possible prostate difficulties. However, all that pain, worry and fatigue is gonna have to end tomorrow because the wife and I are taking our grandsons to Dorset for a week ( I should have more sense!). On a good day they’re great, on a bad day, I have to get between them to stop the haymakers flying and the loss of teeth!
Anyway, I’ll still be on the iPad, so please don’t hesitate to post a message, and say how you’re getting on. Very best wishes,
Peter
Hello again MM,
I’ve just read your post regarding your husband. Drops of 89 down to 16 in just 10days seems one heck of a drop in kidney flow percentage in such a short time. And increases in LCs from 49 to 3200 in three weeks equally seem nasty. I know this may appear to be a daft question, but does your husband suffer from any underlying kidney problem (separate from the MM?).
Is his dialysis a possible temporary measure until he gets a bit better? And is there any drugs that can be given specifically to help the kidneys apart from those given to reduce the myeloma?
Regarding revlimid being the last treatment option. I would check this by asking one of the brilliant nurses on this website if there are further options.
Hope your husband improves, and quickly. Very best wishes,
peter
Hello again Chris,
Well, I have to say that your experience beats mine by a country mile – and I’m glad you came out of it in one piece — literally! They say MM sometimes affects partners as badly, if not worse than the actual patient — but I cannot imagine the disaster and consequences of losing a wedding ring in such circumstances; and thanks so much for sharing that with us. And a message, that every man who reads this will take on board when it’s time for their MRI.
But as an aside, you raise an extremely interesting question. I have a degree in physics, so take some interest in the MRI technicalities. I hope too goodness I don’t bore you…? But during the very intense magnetic field that gets the sub-atomic bits in your tissue to ‘flip-up’ and the varying field that gets them ‘excited’ in order that they can ‘flip-back’ and give out the signal that the Siemen’s sensitive detectors pick up, so constructing the ‘sliced picture’ of your tissue, and any metal that can be magnetised (say a fragment in the eye), similarly gets on the move – and hence the obvious danger. However, noble metals (from my uni’ days) like pure gold and pure silver aren’t magnetic, so won’t flip, and should be okay??
However, having said that, it’s best not to take ANY chances and remove all metal, which I’ve now done — wedding ring safely put away for my prostate MRI in a couple of hours — and many thanks again for reminding us all.
As with modern technology — it’s all a bit of a flipping mystery!
Peter
Hi again CT and all,
Thought I might lighten the mood. Because my consultant thinks I have significant lesions in my back due to LC MM – last night (Thursday), I had a full spinal MRI at a local hospital. I’ve had many MRIs before – in younger days I played a lot of contact sports – and apart from the odd tooth getting knocked out, and head stitches, I’ve had a fair bit of damage to ankles, legs, ribs and back, which as a legacy, required treatments in later life, so I’m pretty used to MRI’s.
Now last night, I didn’t mind my feet being strapped together (to get the correct spine angle), or my torso being clamped to the table, or my head being locked into a cradle, but after about half an hour in the tube, I got an insatiable itch on my right temple! I have a scar, about 2″ long there (due to a sporting accident), and when my body’s under stress, it invariably itches… So amid the clattering, banging and whining of the powerful Siemen’s magnets, I had no option but to try and scratch my forehead.
In doing so, I managed to get my right arm caught up in the emergency button cord, which jammed on the roof of the tube. I’m a fairly big chap, with very little clearance between me and the tube, but after some careful maneuvering, I managed to cure my irritation by getting my left hand under the restraining helmet. I heard garbled messages from the operator through the earphones, but frankly with 100+ decibels raging in each ear, these messages were completely incoherent, he probably told me to lie still, and probably this was the reason for the scan to take well over an hour, for re-takes. But I finally got wheeled out, with a thumping headache, but otherwise fine!
It was all over… Well, not quite. That was yesterday, and today (Friday), joy of joys, I have yet another MRI at 6:55pm related this time to my prostate. Yes, the obvious question: couldn’t they have done both at once? Well no, I’m told by the radiologist, because it’s a totally different protocol, and I would have been under the cosh far too long.
I’m quite getting hooked on the noise and activity of MRI’s, an I’m gonna ask my wife if we can continue with the experience by finding a local disco this weekend — and at least I can have a few beers whilst getting an almighty headache! But do they still have disco’s these days??
Peter M.R.I. (Hons)
Hello again CT,
Many thanks for your post. And, believe me, I know EXACTLY what you mean. I’ve also had numerous (too many to count) free LC blood tests. CT scans, full skeletal Xrays (until I go a glowing green at night!!), and later today I have another spinal MRI. My lambda LCs are 117 at the moment. My consultant is pretty definite regarding definitions, and below is an extract from the Myeloma Beacon web page, concerning non-secretory myeloma (NSMM):
“In the past decade, since a blood test called the serum free light chain assay became widely available, it has been noted that about 60 percent of patients who were previously considered to have nonsecretory myeloma produce light chains, which means that they are not truly “nonsecretory”.
So, does it make much difference at all??
I understand the treatments for standard MM and NSMM are pretty much the same? But I guess it is important to get the terminology correct. Since when I’m with my overworked consultant or one of her team, there are often medical terms banded about, and sometimes the medical people take it for granted that the patient/their family know what these exactly mean. Which of course may not be the case. I was diagnosed about a year ago, but I still consider myself as a new MM patient, and it’s only looking at this brilliant website, and speaking to my GP and hospital staff, that one gets to grips with what it all means.
Very best wishes,
Peter
Hello Tom, Rebecca, CT:
I’m a little confused regarding the term ‘non-secretory (NS)’. I have only lambda LC’s, no PP’s and asked my consultant whether this constituted NS-MM? She replied, ‘No, if you produce excessive LCs – then it’s definitely not NS-MM.’
I obviously need to do more research…!
Peter
Hello Karen,
So sorry to hear about your dad. Please don’t despair, it may not be as bad as it initially looks. Do you know what kind of MM your dad has? Is it PP (paraproteins), lightchains…?
I was diagnosed last year with lightchain MM. Am in a kinda remission period at the moment. I had my last cycle of VDT in Feb’ this year. And I certainly do have hip/thigh pain. I’ve just had a skeletal xray and due a spine mri in a week. After that I see the consultant – and I’ll tell you what she says… Unfortunately, MM is fairly unique to the patient concerned, and it may be difficult to extrapolate your dad’s condition from anyone else’s experience (inc mine!). But I’ll tell you if I get a definite diagnosis.
Also, there are some incredibly positive messages posted by rebeccarollinson – latest under the treatment section (I think). I’m sure she won’t mind me mentioning her name here. And it might be worth reading them if you have time. Very best wishes to you and your dad.
Peter
Hi Rebecca,
Great post to Sue. Well done!!
Sue: hope all goes well.
Best wishes,
Peter
Sorry magicM, I should have added… I personally wouldn’t stress too much regarding a quick sct, especially with the experiences that your husband has had. When I tried to make up my mind some months back whether to undergo an sct (I’m 67 and not been (prior to MM) in great health) , I asked the brilliant medical people on this site regarding the data for sct patients.
They told me the average relapse time for patients undertaking an sct is 18 months. This is average, with some getting to 2 1/2 years and longer, but some,unfortunately relapsing before the 18 month average time. So, in my case, and bearing in mind the time it takes some people to get over the sct, I decided not to have one. I think this decision was right for me, but it all depends…
if I were you, I’d take the advice of your consultants, get information regarding the risks and sct process, and take up this option when your husband is stronger and completely ready. And can I wish you, and your husband all the very best for the future.
Peter
Hello M Moments,
I can better that… I was diagnosed with MM this time last year. My LCs were over 11,000 (yes eleven thousand), and after a couple of cycles they dropped to 464 and then down to 6.2 and then 8.2. This was on VTD treatment. Unfortunately, they are on the rise again (117) but this is after my last treatment was in Feb 16.
Don’t know if this information helps??
Best wishes,
Peter
Hello 007 (Les),
For some reason my ipad can’t post to myeloma.uk. But if you’ve rec’d something like my current post, then I apologise. I’m on a PC now.
If your question is whether MM is curable, then all the consultant experts I’ve spoken to say ‘No’. Irrespective of what or how many SCTs one has. Not at this time, with current medications.
However, my old GP had MM and prostate cancer. That was 10 years ago and he’s still going strong. A kidney specialist I spoke to in the Royal London Hospital, told me he had an elderly lady patient who developed MM in her mid seventies – no SCT – and she’s now 90, and as before, still going strong!
Unfortunately, there are patients who are less fortunate. But who knows…? With new drugs just around the corner (EU or not), I think there’s every reason to be optimistic.
Best wishes,
Peter
