[phil47Participant]

Hi Vanessa,
I was diagnosed in Mar 12 aged 47 with a biopsy of 95% plasma cells and a pp of 73. After 6 cycles of CTD they'd got me down to 4% on biopsy and pp of 6.4. However, as soon as I stopped the treatment my pp started to increase again and so my SCT was made urgent. The last pp measurement taken before my SCT was 13.9 and I was keen to have more treatment to bring it back down again but they said it was not necessary (it may have been higher than that by the time I actually had the SCT). My first pp reading after my SCT was the same as before, but when I had my biopsy 100 days post SCT I was still at 4% and my pp was down to 10 (with no treatment since SCT). Despite pp still being present my consultant says I am classed as being in remission, the biopsy is the gold standard test, and my pp is still slowly dropping (9.3 last month) and i have now started maintenance treatment which has the possibility of reducing it further.
I can imagine how you and Stewart are feeling. I thought I was bullet proof, I had no symptoms other than a visual problem in my right eye whilst away skiing, which turned out to be a blocked vein due to the thickened blood. I was as fit as a fiddle.
However, hopefully Stewart will sail through his SCT. It seems the younger the better, I had only minor symptoms although I was expecting it to be terrible. Make sure he sucks loads of ice when he has the chemo (I did for 2 hrs) and drink at least 3 litres of water per day. Clean your teeth after every meal and mouthwash with Corsodyl. I had minimal mouth discomfort following this regime and didn't have to stick to soft foods.
For reassurance, I'm able to go to the gym again, play golf and go canal walking (6-7 miles) each week.
Hope everything goes well for you.
Phil

[sessakellyParticipant]

Phil, thank you so much for taking the time to fill me in on your journey. It seems not too unlike Stewart's, and hopefully he will go into remission as you have. It's great to hear you're back enjoying life also, Stewart is very low sometimes because he can't go running, play football golf etc anymore, it was his release. Now all he has is me nagging him!!!
Thanks again Phil, I hope the best for you and those you love.

Vanessa

[DaiCroParticipant]

Hi Vanessa,

I completely understand that you are mad and sad by turn and that you want Stewart to have the very best chance of a successful SCT. His frontline treatment was CDT, a tried and trusted treatment and it has got him into the safety zone… PP's @ 14 is doable although I fully appreciate that 10, 7, 3 or 0 would make you happier. As others have testified their PP's continued to fall without the aid of treatment or indeed maintenance drugs… some slowly and stopping at a low plateau and others to full remission.:-)

The stage is set for Stewart now, he is young, reasonably fit and will handle the rigours of the SCT better than most. It won't be a breeze but he will cope and recover perhaps quicker than most. His PP's will be measured for the first few months and I for one will be surprised if his PP's don't reach full remission within the first 6 months or so. 😎

The only resin for further treatment now will be if Stewarts PP's start rising before his SCT… and even then the medics first answer will be to bring the SCT forward as soon as they can, although their is no reason to suppose that that will happen… I had CDT as well and I reached full remission. For various reasons… an infected Hickman line that had to be replaced which caused me to miss my harvest, followed by Christmas and starting the harvest cycle again etc., meant that my initial plan for a pre-Christmas SCT was postponed until the first week in March. My Light Chain remission didn't huge an iota… I was still clear after nearly 5 months and was still clear after the SCT. I wasn't randomised for maintenance treatment and my consultants prognosis of 3 to 5 years (based on the rapid success of full remission after only 3 months of CDT) proved to be a tad optimistic as I relapsed after only 10 months… which only goes to prove that MM is a very individual disease. :-0

Unfortunately, although the disease is different from individual to individual the treatment programme is the same for everyone… based on financial rules for progression by NICE, the clinical and financial body that determines the levels and order of treatments for MM. So unless you can afford to move to the states and find a specialist MM hospital to take Stewart on you are stuck with NICE's programme.

Frontline
SCT
Velcade
2nd SCT (if he has produced sufficient stem cells, otherwise Velcade is given as a stand alone treatment).
Revlimid
Whatever is available (depending on Myeloma levels, bone damage etc.,) .Bendamustine, Pomalidomide… both through applied for funding… or, if you are lucky, a trial for a new drug but these trials are getting far less common than a couple of years ago.

Of course, by the time Stewart relapses from his 1st SCT the world of MM will have moved on apace and the above model might be completely reordered or at least extended by several new treatments. Our American cousins are bullish about MM being downgraded from a terminal to a chronic disease (by the median survival rate being at least 10 years. They say that survival rates of 15 to 20 years is not that far away either… but the terminal to chronic downgrade is imminent (3 to 5 years tops… so the future is looking good (relatively good that is)… not for me and some others on this board but for people entering SCT's at this time, with a post SCT to relapse of 3 to 5 years can feel much more confident of falling into the longer survival category.8-)

Carfilzomib was licensed in June/July 2012 in the states under the name of KYPROLIS. At some time, however much Europe and the UK drag their feet, Kyprolis will be licensed here. It has had excellent trials and will become available either as a frontline treatment or as a treatment combined with Revlimid and Dex or suchlike, further down the road. The last treatment to be fully licensed in the UK was Revlimid, in 2006. Although Bendamustine has been around for years and Pomalidomide for the last couple of years, neither has ever been granted licensed status and your hospital has to apply for funding in able to secure their use for treatment.

But treatments in the USofA are far more flexible and suited to the individual, with many hospitals doing away with SCT's altogether, preferring novel agents and tried and trusted treatments (many at a much lower levels than we get) and their survival rates tend to be much longer than ours. Our medics are hidebound by NICE and now a government that is decimating medical services in the UK that have a direct or indirect effect on our treatment. But eventually we will catch up (by only being a year or so behind America) and their treatments and their methodologies will force the hands of Governments and, in our case in the UK – NICE into following their lead.:-D

So while this bloody awful disease is not what any of us would wish for, the relatively short-term future is looking much better than it does right now… so good luck to Stewart and his SCT and I wish him a long and healthy remission and the better choice of treatments available to him after his SCT's.8-)

Ramble over…:-) regards

Dai.

[VickiParticipant]

Peter

Glad to hear you have got through your sct, well done you! You have always been so positive and clearly that pays dividends! Colin lost all his hair, not eyebrows though. Since coming out of hospital the last month has seen a real growth spurt in the hair, beard growth etc, so it will come. Hopefully you will continue us to improve slowly but surely, taking it easy when needs be. Your positivity is an inspiration to all of us 🙂

Vicki and Colin

[VickiParticipant]

Hi Dai

As usual a very comprehensive response about what's occurring elsewhere in the US and encouragement for others. I will catch up on your post but hopefully things are going well for you?

Vanessa, hopefully some of these posts are giving you and Stewart encouragement? We fully understand why Stewart might get low, as they can't do what they've been used to, running about here and there. We started tai chi last Tuesday and Colin was a bit despondent after because he had to sit down for a short while half way through and we had driven past the leisure centre where Colin played squash and badminton regularly. However we are coming to the conclusion that anything is possible, it's just a case of slowly slowly so keep your chin up both 🙁

Vicki and Colin x

[sessakellyParticipant]

Dai,
You answered questions I hadn't yet asked but had on my mind! So informative and explanatory thank you so much. I feel both Stewart and I were flying blind and relied on just his consultant who really isn't that forthcoming.
I can't fault nhs treatment (Stewart wouldn't have a bad word against the Western General Edinburgh) but oh to be rich and see what other treatments were available, particularly in the US.
Dai, I have to say you're inspirational and it's people like yourself that help others stay strong along the MM treatment journey.
Long may it last

Vanessa

[jmsmythParticipant]

Thanks for that Dai. You eased my mind as well. Franks. PP plateaued at 2 and is waiting to go in for SCT. I was so depressed that it did not reach 0. Feel a bit better. More info from you and a registrar than we have gotten from consultant in 6 years 🙂

Vanessa hope all goes well for Stewart. Keep us I formed – as Frank is waiting it is good to read of others experiences

Best wishes to you both
Jean

[PeterJamesParticipant]

Hi Chris
Had my second review yesterday, now two weeks post demob
Bloods all back to normal , further test in two weeks to check where I am remission wise
Slowly getting back on solid food , mouth ok , but little or no sense of taste,
They are trying to cure my nasty dry hacking cough , which I have now had for some weeks
Hair loss was strange, beard went , plus eye lashes, nose & ears !
But after loosing most on top , hair loss stopped leaving me with sides ! But I had tried to trim this very short thinking it was all going to fall out , now looks like a badly cut hedge !
So far so good , I hope !
Peter

[FOXLEYParticipant]

Hi Peter,
Glad you have broken your silence and bloods are OK. Annoying about the cough though. I came out with a cold last week but managed to throw it off. Do take it one step at a time, being careful not to get overtired. I still get lots of aches and apparently this is quite normal for the first 6 months.
I will be interested to know what they say about remission. My PP's were below 2 after CDT and were still below 2 after high dose chemo. I was disappointed by this but had not thought to ask before the procedure what to expect in terms of PP levels.
Myeloma nurse said that it was impossible to draw conclusions from these results but that levels could continue to decrease for up to 18 months. On the less positive side she had experience of patients with undetectable disease after STC who relapsed shortly afterwards. I wonder whether anybody else on this forum has been told something different about prospects for remission.
Hope your cough clears up soon.
Chris

[jmsmythParticipant]

Bump

[PeterJamesParticipant]

Hi Chris
Forgot to ask you or anyone else who can help
I still have a fairly dry mouth , little or no sense of taste so eating solid food not easy
Small amounts possible , my wife tempting me with all sorts with varying degrees of success
How long did your taste / appetite take to return
I used to have a more than healthy appetite , would eat anything , happy days !
Peter

[tomParticipant]

Morning Peter

Yep Early Days and you are doing good, Moth will soon get better as will your will to eat, My young Bride (Elaine gave me mine food on a small plate so as not to overface me so to speak (it worked am now back to being fat ha ha)

All the Best Peter now am off to work 😎

[PeterJamesParticipant]

Hi Chris
Now five weeks since my escape from Christie
Virtually back to normal apart from slight cough & still some loss off taste , specialist says this will take a few more weeks to come back
So I have resumed my domestic duties & back working part time, off to York next week for two day conference which will be nice
Reading other posts I realise how lucky I have been with treatment & rapid recovery
Specialist says ,I have walked it
Week ago yesterday I had a blood test which will reveal how we'll into remission I am, result due next week
I would like to be told that I am in full remission , but specialist says he would be happy enough with a near miss
My pp @ start of SCT was 3.8
Specialist says whatever the result is now it won't alter any over time
Not really discussed any maintenance treatment , get feeling they are the vein , let well alone , but I will discus this at mt next appointment 23 rd March
Whether my excellent progress to date is an omen on remission , I doubt it
According to the USA side of things , lots of new drugs coming through the system , I would be happy with one that just keeps me in permanent remission , a dream or reality , we will see in time
All the best
Peter

[FOXLEYParticipant]

Hi Peter,
Glad to hear that you are doing so well. If I was still in harness I don't think I would have felt like going back to work so soon.
We spent last Thursday to Sunday in London, much against my wife's better judgement because we spent quite a lot of time in big crowds. Let's hope that I didn't pick up any nasty bugs. The only after effect that I have from the SCT is a delicate digestion. If I am not cautious alcohol and rich food together can have bad consequences sooner that would have been expected otherwise. I also have intermittent pain from my crushed vertebrae. I am awaiting a scan at the Manchester Royal Infirmary.
The whole question of remission seems to be vague immediately after the transplant. The only haematology consultant that I have seen at the Christie since discharge was on Christmas day when I ran a temperature. I go to University Hospital of South Manchester for Zometa every 4 weeks and last Wednesday I was told that my PP had gone up from <2 before transplant to 2.4 4 weeks ago. Consultant did not seem concerned and said that no conclusions could be drawn from it. I asked whether a bone marrow biopsy would tell him more and he said no. This is because at such low levels of PP looking for cells in the bone marrow through the microscope is pretty hit and miss and anyway the findings would not affect my treatment. I forgot to ask about maintenance but will do next time.
Let's hope you shake off your cough soon.
Chris

[PeterJamesParticipant]

Hi Chris
Did you attend Christie as private or NHS patient ?
I would have thought Christie should have done a blood test after approx five weeks to see where your pp was at
What was it pre SCT , did they say you were in remission or good partial remission ?
Your last posting misses off what your pp is now
We have avoided smaller crowded places until this weekend , when to my astonishment our daughter treated us & two of our grand daughters to lunch, there I'd successfully had some white wine & chocolate, big step forward
Even some facial hair coming back for spring
I have an unproven theory that large places are more germ avoidable than small places !
So Trafford centre ok along with large garden centres
From your photo you look too young to be retired or is it 20 years old !?
So I am hopefully waiting for my blood test result this week
I will soon return to the zometa infusions, only had one , most likely at my local BMI hospital, only 10/15 mins away, whereas Christie at least an hour
Is your spinal problem from the MM ?
Peter

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