[briananParticipant]

I was diagnosed with MM a couple of years ago.  I commenced VCD chemotherapy in April this year and it has gone well.

I am now being offered SCT but I am keen to consider other options – perhaps ongoing monitoring/maintenance.

I would be very interested to hear from any members who decided not to have an SCT and went for another option and what that option was.

Many thanks in advance for any help that you can provide me.

Brian

[peterlParticipant]

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

[briananParticipant]

Hi Peter

<span style=”color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 16.08px; background-color: #f6f7f9;”>Many thanks for your thoughtful reply – it is very helpful. I saw my excellent consultant yesterday and we had a good discussion about the options. I am going to have a further round of chemo. so that enables me to put off the decision for a while and to do some further research. Although I am in reasonable health, I am 69 and therefore SCT may not be an option for me in the future. I do wonder about the accuracy/relevance of the often quoted statistics about the increased remission times that SCT can provide – particularly now that better drugs to support maintenance etc. have become available. (The ‘Catch 22’ of course is that the best drugs may not be available under the NHS.)</span>

By the way, I put the same question on the Myeloma UK Facebook page and received a number of replies.

All the best

Brian

[avantrompParticipant]

Hallo Brian and Peter
My experience might contribute to your thinking on the subject.
I was diagnosed in Feb. 2010 and put onto Revlimid 7.5mg., 3 weeks on /1 week off. My dose has never changed and
my paraprotein has hovered for years around .5g/dl. I am at a loss to know why it has been so successful for me but long may it last!
Annette

[briananParticipant]

Hi Annette

Many thanks for your reply. Let’s hope your success with your treatment continues for many years!

I have discussed Revlimid with a number of people and it almost seems like a ‘wonder drug’. It’s a great pity that the NHS seems to be restricting its use for some new MM sufferers in some circumstances.

A basic question: on the weeks when you take Revlimid, do you take just one 7.5mg tablet?

I hesitate to ask a lady her age! I am a mature MM sufferer of 69; are you similarly mature or much younger?

Brian

 

[peterlParticipant]

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

[avantrompParticipant]

Hi Brian
I shall be 73 tomorrow. In my mind I feel much younger. I go shopping on my bike and I play in a large accordion orchestra.
Revlimid capsules come in units of 5mg, 10mg, and 25mg, as far as I know. I started off with 10mg but had such an adverse reaction that I went to 7.5mg, that for me means alternate days of 2x5mg and 1x5mg. I have a spreadsheet that I tick off each day, it’s so easy to get it wrong.
I have great sympathy for MM patients in Britain who are unable to access Revlimid in early treatment. I have lived in the Netherlands for decades and here Revlimid now forms part of initial treatment.
My husband is calling me back to work. We do regular translation work for companies and are on an urgent job.
best wishes
Annette

[avantrompParticipant]

Hi Peter
I was told that I was too old at 66 to have an sct. I was so taken aback with the diagnosis that I didn’t pursue it. I know now that I could have pushed for it but am extremely pleased in retrospect that I didn’t have one. But that is the problem with MM. You never know how you will respond to a particular drug or treatment. A friend here went onto the same medicine path as I did but it failed for her. Come the day when it is possible to match up genetic profiles to specific drugs!!!
I would love to have a cycle break but am loth to rock the boat.
I am very interested to hear what you and Brian ultimately decide – it’s tough.
Annette

[peterlParticipant]

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

[avantrompParticipant]

Hi Peter
Do you ever go to The Myeloma Beacon?
http://www.myelomabeacon.com/forum/
The site is linked to a cancer hospital in the U.S. They have a large pool of forum entries covering every imaginable aspect of MM and the mails are all sorted, making it easy to find what you want. You can request the newsletter and peruse the forum without having to register. I receive a lot of information about worldwide research.
http://www.myelomabeacon.com/email-subscription/ (for newsletter)

Annette

[peterlParticipant]

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

[peterlParticipant]

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

[briananParticipant]

Hi Peter

Many thanks for the info. concerning the Mayo clinic study. It sounds encouraging!

I would be very grateful if you would send me web link.

Brian

 

[peterlParticipant]

Hiya Brian,

http://www.myelomabeacon.com/news/2016/05/27/myeloma-morning-early-relapse-survival-ninlaro-kyprolis-europe/

Hope you find it useful.

 

Pete

 

[briananParticipant]

Hi Peter

Many thanks for the link. SCT or no SCT? – a very difficult question! My feelings at the moment are that if an individual is in good health, then SCT (even though it is something of a ‘sledgehammer’) is marginally the better way to go.

Brian

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