[andrewrParticipant]

No medical background but my myeloma was picked up at an early stage by a blood test showing a higher paraprotein level than normal, the same was true for a friend. Get it checked as early diagnosis is very helpful in early treatment options.

[andrewrParticipant]

Sorry for it being so late but I thought my story might be of interest.

I was diagnosed in 1997 but only started treatment in 1999 when I had chemo followed by a sterm cell transplant. Post transplant there were very few treatments available and bisphosphonates were a new and novel treatment!

I had a second transplant in 2015 and relapsed in 2017 and am currently on my 33rd cycle of Lenalidomide and prednisolone and have plateaued at a reasonably low level of paraproteins.

The real story is what Myeloma UK, some very great clinicians and Eric Low have achieved in the 22 years. There are a plethora of new drugs on the horizon particularly the anti-virals, genome based drugs and Car T treatments. From this point of view whilst it’s interesting that some people have survided 20+ years the key fact is that more average patients will survive for much longer and may even see a cure.

I believe that the chemo’s we see nowadays and have seen for decades will soon be considered as barbaric when targetted treatments become the norm. The concept of destroying all your immune system with drugs in the hope that some can be fed back and re-establish your immune system before the cancer re-establishes itself will join bloodletting in the museum of science.

The object now is to play for time to ensure you are around when the new treatments become mainstream

[andrewrParticipant]

Pavvy,

I was diagnosed with MM via a similar route when I was 47. The term smouldering MM wasn’t even used then because it was back in 1997. I’ve since, through the watching and bloodtest process, had two autologous transplants (the last in October 15).

As somebody else said MM is individual and it’s better being watched so that early treatment can be used (which is more effective) but more importantly you’ve got time and time is when new drugs get developed. Thalidomide and Velcade were not even around when I was 1st diagnosed. I had interferon which isn’t even spoken about. Keep to the regular blood tests, go to Myeloma UK Infodays to keep up with developments and perhaps do some of the things in life that you might otherwise have delayed.

Remember even though you’ve been diagnosed with MM you’re at the lucky end of the MM spectrum.

 

 

 

[andrewrParticipant]

sorry – you’ll feel rough for a week or two

[andrewrParticipant]

Dino,

With the exception of the help of the doctor I could have written pretty much the same story only 5 weeks ago. I’m now worried that I’m putting weight back on faster than I’d like, working in the garden and eating for England!

It’s amazing how, once the recovery starts, how fast you start getting your strength back – hang in there. You’ll feel for a week or two after you come out but it’ll all be worth it in the relatively short term.

 

Andrew

 

[andrewrParticipant]

I’m about 6 weeks post second SCT. I’m recovering well and putting weight back on again after losing two stones. Already I have most of my energy back and plan to start picking up my normal voluntary work again very shortly.

The SCT process was rough and visitors and text and facebook support from friends  and family was very important at putting a smile on your face when you’ve nothing else to smile about.

 

[andrewrParticipant]

I was allowed visitors every day as long as they had a plastic apron and gloves

[andrewrParticipant]

Just had my SCT at St. James some rooms can get a decent 4G signal!

Great nursing staff though

 

[andrewrParticipant]

You forget how bad it was!

The melphalan does knock you about. It took a couple of days to get the sickness it causes under control and I basically stopped eating, ultimately losing two stones in weight. Now I’m eating again my taste buds are beginning to come back and my paraproteins have dropped significantly.

It has to be said that response to the drugs is very personal so there’s no guarantee that you’ll be affected the same way. I was in hospital for just over two weeks so you may be out for Xmas

I hope it all works out

 

 

 

[andrewrParticipant]

Just b een through my second SCT (thankfully 15 years apart) and whilst it’s rough at times memory fades very quickly as you begin to recover.

 

Good luck

[andrewrParticipant]

I was diagnosed in 1997, had first transplant in 1999, crawled out of hospital on Dec 24th 1999 and just made a Dec 31st Millenium Party.

Obviously I am one of a tiny percentile

 

[andrewrParticipant]

Hi Peter,

I have about a 6 week gap between harvest (yesterday) and stem cell transplant (Oct 4th). I’m using this time to go to the Southampton Boat Show, visit Mum in Law, and spend a couple of weeks on my boat in Spain. How’s that for not letting MM rule you – even when in treatment phase. All fully supported by the Leeds Consultants.

As far as I understand…..

Day one in hospital is high dose chemo (Melphalan),

Day two is stem cell transfusion

Next 14 days is checking to see if graft has taken and that there are no infections. Obviously again no guarantees. Then about 2-3 months for full recovery.

My consultants hope, on 2nd transplant,  for about 50-75% remission of original remission. I wouldn’t guess how much remission you might get from a 1st SCT.

In my experience ALWAYS, ALWAYS pick up the phone and speak to the staff at Myeloma UK or go to an Infoday. They always gave me good info or pointed me in the right direction and in 1997 they didn’t have the resources they have now (it was just Eric and an assistant).

A

 

 

[andrewrParticipant]

I think you definitely need to talk to other consultants. I’m 64 and undergoing the full SCT (yeahh… got full stem cell harvest over on 1st day and that was today!), None of these things are very pleasant but they are manageable unless they come up with serious reasons why it’s not for  you.

Remember by having an SCT you keep all the other treatments in reserve for later use as (as far as I am aware) none of them are effective for ever

 

[andrewrParticipant]

I have to say that Renal Consultants do not figure highly in my list a competent practitioners. When my GP suspected problems but with no idea of what they might be, I was under the the “care” of a renal specialist. After a weekend in hospital for test I went to see him and he told me very bluntly that I had an incurable cancer, Multiple Myeloma. Being both alone and very shocked (nobody had mentioned any chance of my slightly high protein levels possible resulting in a terminal diagnosis) I was very quiet, he then went on to say (and I shall never forget these words)….

“Now is the time that intelligent people ask questions”

One day I hope another consultant returned that favour to him.

That was in 1997, I had a SCT in 1999 and am just in the process of going through a stem cell harvest for SCT no. 2 aged 64. Had 15 excellent years in between. Every persons Myeloma is different but Myeloma UK is always the place to get current and objective advice.

“Don’t let the b*****s get you down!”

Andrew

 

 

 

 

 

[andrewrParticipant]

Just balancing the last comments from David.

 

I bought impaired life annuities in 2000 after being told that I had 10% chance of living 5 years. That is now exactly 15 years ago.

 

As has been said by Financial reporters the risks with the new system are related to underestimating how long you will survive. New treatment regimes are forever extending survival times and actuarial figures are based on historical data, so there is a better tthan normal chance of winning the bet -and that’s exactly what it is. Your best estimate against theirs

[Author]

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