Sorry about the formatting in my last post.
Peter
Hello again Brian,
Thanks for your post. From a personal point of view, the impact for me on VTD was considerable. I was on it for a full 8 cycles, and this combination of drugs caused my FLCs to collapse from > 10k down to single figures in a few cycles. My k/L ratio was also within limits for the full 8 cycles. So, from my experience, if it’s a fast impact that you require, then VTD might just work (but of course we’re all different). A chap I used to talk to in the MM clinic was also changing from VCD to VTD. And he seemed to be doing fine after, but he never went into details, and he’s now on a different clinic time to me. As an aside, and talking to my consultant regarding what’s going to happen at my first relapse. She said that the second line treatment with cocktails containing <span style=”font-family: Arial , sans-serif;”>cyclophosphamide, are not really a preferred option (ie not that effective). I can’t say whether this is correct, because I have no idea, and I don’t know whether this can influence your decision, but all I can say is that VTD did work for me.
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Have a great Christmas and new year,
Peter
Hello Valerie,
A brilliant story — and well done! And as you say, treatments are improving all the time. Thank you for telling us all; about your story, and have a great Christmas and a fulfilling 2017.
Well done again, best wishes,
Peter
Hi Brian,
Can you say what benefits (in terms of improvements) the VCD gave you over the 4 cycles? And what’s the nature of the plateau that you’re now experiencing?
Peter
Hi Andy,
Nasty to have a squamous carcinoma on the skull! No problem with the carcinoma, because they hardly ever spread, but on the skull veneer , it’s a bit difficult to get it all out in one. I’ve had many head stitches through sports accidents, and it can be a bit uncomfortable after the treatment. Did your consultant say there was any connection with your reduced immunity (due to the MM medication) and the development of the carcinoma? See my earlier post regarding prostate difficulties.
Some years ago I had a squamous that developed under my left eye. It never bothered me until it started bleeding, if I dried my face with a rough towel. The surgeon (Dr Salisbury) asked me how long I’d lived in the tropics? Because of the UV skin damage to my face! Never, I replied. Some Mediterranean holidays (obviously) but nothing more. It then occurred to me… Years ago I also played a lot of tennis, and in those days there were no tie-breaks, so five setters could go on a long time. Looking up at the sun and serving didn’t do me any favours, and I couldn’t use creams because they stung my eyes! And in those days sun damage wasn’t really appreciated, and certainly not by my coaching team.
Hats, cream and loads of MM treatment are now the order of the day for me. It was great to hear from you, have a great Christmas etc. And all the best,
Peter
Hello Neil,
What you’re experiencing is entirely natural, and it would be very odd to know you’re suffering from MM and have little anxiety. I’m still coming to terms with my diagnosis (nearly 18 months ago), and having gone through 8 cycles of VTD, I’m also pretty certain that these can affect mood and certainly anxiety, especially in my case that after the last course of treatment (Feb 16), I was still walking around with a loo roll tied across my shoulders until Sep! It was rare, but the drugs affected me personally, in that way.
Now I can go through hours/days giving MM no consideration at all, but some days I wake up and it hits me like a thunderbolt, especially when I get a pessimistic blood test result. BUT, we are where we are… I have two specialist oncology nurses that are very busy but devote time to me and answer questions when I’m at the hospital, or even over the phone, so they are an invaluable source of support. And as Greg says above, this www is a brilliant resource for information and support. You can always use the ‘ask the nurse’ facility (myeloma uk) as well, either online or using the phone (I go online, so I don’t know about the phone usage). But the nurses are very caring and professional, and have helped me no-end.
Very best regards to you, and I hope all goes well. Keep us informed regarding your progress.
Peter
Sorry, I should have said – if you’re new to this mind bending, sometimes awful MM experience, there’s loads of info guides on this website that you can download, and that you and your Ma can look at. And as I said yesterday, MM is very particular and affects people in many different ways. For expert advice that’s just relevant to your Ma, you can either call or use this www to “Ask the Nurse”. I (as an 18 month sufferer) have found their caring and professional advice invaluable in my fight against MM.
Peter
Hello again Molly,
Thanks for your reply. If your Ma has lightchain MM, there’s 2 types: lambda and kappa, and both can affect the performance of the kidneys. I understand that other forms of paraprotein MM can also affect the kidneys, but I think that the lightchain versions are the worst. So it seems a good idea to keep as fully hydrated as possible (drip/drinking), if your Ma’s renal function is impaired.
I would ask the consultant, and find out what blood test results are important to your Ma’s well being. Best of luck.
Peter
Hello Molly,
Sorry to hear that your Ma is suffering badly from the VTD treatment. I was diagnosed in July ’15 and had a full 8 cycles of VTD until Feb ’16. When first diagnosed, my specialist hospital nurse gave me a Macmillan Organiser, which I actually used after the first few weeks (sad eh!), to record the effects of the treatment. I’m looking at it now… I used X’s and ticks to signify bad and good days respectively, and on average, on a weekly basis, there were more X’s than ticks in the early months. I used the pattern to try and get an idea when I’d be ‘fit enough’ to go out, during the weeks. It got better as time went on, with roughly 4 ticks and 3 X’s a week towards cycle 8. I had no sct, and am still in remission. This horrible disease affects patients in entirely different ways. I had no sickness, but couldn’t eat much. I lost 4 stones. I had severe shakes and wobbly legs, breathlessness and felt cold and shivery even when the room temp’ was 25DegC. But I agree, sickness is a nasty side effect.
Could I ask what type of MM she has: light chain, M spike…? And is the pain in her hips/back…? Is she drinking okay? [especially if her kidneys are affected].
As Louis Henry says, hang in there, my experience was that it got easier as time went on, but I felt pretty ##### at the time. Good luck to your Ma and the family.
Peter
Hello Nihal,
Sorry to hear about your dad. I am no doctor, just a sufferer of lambda light chain (LC) MM. To my untrained eye it looks like your dad has kappa LC MM. I understand if you have LC MM, you tend to have just one type (kappa or lambda) but not both.
As David says above, you have to speak with the medical team and ask them the significance of rising kappa LCs and the meanings of all the other test results. Sorry I can’t help any more. Best wishes to your dad.
Peter
Dear Rebecca,
Regarding your last message… I think your positive thinking, encouragement and support are absolutely first-rate; even amidst this sad story. So thank you from all of us.
Peter
So sorry to hear about your husband. Very sad. And my condolences also.
Peter
Yes, thank you for your post. Our local blood test centre has been closed for three months, of all things due to a plumbing problem. Yes, three months. I have to have regular, GP initiated blood tests, and I got fed up travelling to the ‘local’ hospital, where two weeks ago, the minimum wait time was 100mins. It’s terrible if you’re on a fasting test, like the young mum that sat next to me with a toddler, waiting…
I emailed my MP, and got a formal reply back from the NHS supervisor that controls all the local blood test facilities; saying the usual fluff, BUT also, that the closure of the facility has been revisited, all requisitions for work (to bring the facility up to standard) have now been signed-off, and it will be reopened within the next week!
So it’s nice to report just a little success in these things.
Hiya again Rebecca,
I think it would take some proving that any benign mm strain (keeping a more aggressive one at bay) would definitely kind of ‘give-up’ on relapse and be courteous and let the nasty little devils take-over! Whatever the Beacon says. It could well be that on relapse (however one defines it – and that’s a whole chapter on its own), it’s just the magnitude or increase in the clone copies of the existing strain that causes the increase in whatever the parameters of the items tested in your blood. The mm cells do mutate, but they also identically increase I understand.
And I’m not sure of the accuracy of the claim that benign excludes nasties anyway? But I stand corrected if the Beacon post is correct. Sorry to be a bit -ve in this respect.
I stick by what I said, I personally (as a medical layman) think your unique response has been pretty good (I’m saying that as an understatement), and I think you can personally look forward with optimism! Get your schedule of renal blood tests securely in place, and forget about tomorrow. If I were in your situation – I’d be happy – and certainly would look forward in a good way.
Best wishes,
Peter
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!
