[AndySParticipant]

Well it's 6am. I've made a cup of tea, emptied the dishwasher and hung up the washing and fiddled with my computer for half an hour. Must be a Dexi day and I'm feeling Grrrreaaaate! Funny thing is; only my wife seems to be getting angry.
I will be 65 in July and fairly fit and I've been on CDT for just over a month now and had my first review last Friday. My paraprotein is down from 44 to 14 which my Haematologist seemed to find encouraging and mentioned STC for the first time. It is done at my hospital (Norfolk & Norwich). I know from reading the forum that many of you have had stem cell treatment and would much appreciate any advice you can offer of the pitfalls and advantages to be obtained in excercising the options which seem to be available to me ie. as I only live 20 minuites from the hospital I may be able to opt for a fair bit of it as an outpatient and avoid some of the infection risk for example. He also mentioned the option of going for an early STC or carrying on for a while for more chemo. I seem to be coping well on the low doses I'm getting and have family commitments through the summer and really don't want to mess up a very important event in August, so if possible, I would prefer to start thinking about doing something about it in the Autumn. Is this wise? As these are very early days what are you thoughts about the whole proceedure? Is it worth all the hassle? I'm fairly sure in my own mind that it is, but the more I can find out the better I feel able to make the best decision possible. Thanking everyone in advance.
Best wishes to you all, Andy

[MinParticipant]

Hi Andy,and welcome to the mm club,
This is such an individual disease that the advise has to be there is not a one size fits all answer. My husband had an sct which technically is classed as a failure as he relapsed within 5 months. But that is not to say I would not recommend it. He went for an 'early one' and one wonders if he had waited until the numbers had come down to zero, if the outcome had been better. Similarly he came home on the day of his transplant. traveled the three miles or so every other day to the hospital for blood tests. On reflection I now realise that the one thing that was missing from his discharge was advise regarding a neutropenic diet.
It is only because he is now neutropenic due to his new medication that this question has arisen.
I would say see how it goes and if you get to the event you cant miss in august re-assess, and make a decision then.
In addition if you an get your figures to as low as they go before harvest, you will not be putting them back in at transplannt. Bottom line is at harvest if you have paraproteins that count. They will be collected and given back to you. Go for low!
Min

[PerkymiteParticipant]

Hi Andy, firstly welcome(?) to our merry band.

I am 68 diagnosed in July 2009, PP level 39. Before I had my SCT, in December, I was absolutely convinced it was the way to go but doubts have begun to creep in and my personal jury is out on it. I did not have the problems of pain and movement that some seem to have with this disease, I was doing jobs around the house before SCT and I am still doing jobs around the house after SCT. As my wife says, ?I was an annoyingly happy bunny before SCT and nothing has changed?. So, I was not expecting anything dramatic. However my Paraprotien which was 1.8/1.9 before SCT went to 2.2/2.3 after it and I have to be honest I expected them to hit zero or .5 area at least and not to go up! I have just wacked all the fast growing cells in my body with a dose of mustard gas, the cancer cells seemed to have enjoyed it :-S

Having said all of that I have just asked myself the question, ?would I do it all again? and I answered, ?yes?. My aim has always been and remains to beat my personal prognosis of ?2/3 years, all being well? which was passed down from on high July 2009 and I think having the SCT has helped me but I set to much store on the SCT ?curing? me which it of course cannot do.

So the short answer! Is YES go the SCT route but recognise its limitations. Personally, I would wait until your PP reading is as low as it will go and reaches plateau, mine was below 2, and even with a double dose of chemo would not go lower.

I did a ?musings from ward 9? whilst undergoing my SCT you might find it of some interest, it is under Treatments, about page 3 or 4 I think.

Kindest regards
David

[KeithH17Participant]

Hi Andy,I would agree with what Min and David have already said with regards to the SCT.
I had mine in May 2008 and unlike David did make the magic zero PP rating and held it there for 2.5yrs before my inevitable relapse late last year.
I am currently on my 3rd cycle of Velcade with a second SCT planned for around the middle of the year.
The jury is out on this procedure but the idea is to prolong remission for as long as possible so I would say go for it.

Keith.

[AndySParticipant]

Thank you Min, David & Keith. Your experiences are very helpful, but as you say it's such an individual thing it's, I suppose, what happens in the next few months will decide what will happen and I'm just a bye-stander really. If my paraproteins keep falling at the original rate I should be down to zero by about next Wednesday! Haha! I'm being very cautious about getting too carried away about progress because I don't want the crushing disapointment if it goes pear-shaped for a while. I think I will try to stick out for the lowest PP count I can get and if I can't get it really low I might have to think about not bothering, although I read the other day of a process in which they can screen and seperate PP from the harvested stem cells which is used in some places. I might enquire whether they do this at my hospital. Probably in the USA though.
Best regards,
Andy

[PerkymiteParticipant]

Hi Andy,

I do not want to dampen your enthusiasm but generally the pp level goes down quite quickly at the beginning of CDT treatment then it tails off, the last little bits being difficult to kill off.

I did read somewhere that they used to treat, irradiate I think, the Stem Cells used in transplants but found that it did not make a lot of difference. The other point I read quite recently was that the Stem Cells that are harvested are immature ones that should not have been affected by the Myeloma at that stage. Both of these points you should take at face value only, there is so much rubbish out there about Myeloma.

One interesting topic, again I make no claim on accuracy, was that at any one time some Myeloma cells "sleep" i.e. are not active. Hence they are immune to any treatment that attacks fast changing cells, such as CDT. Of course at some point they awake and you are back to square one.

Kindest regards

David

[DMCParticipant]

Hi Andy I would also agree with the jury being out on the SCT procedure. I also agree that MM is such a personal condition ( I don't like useing the word disease).Different people react in different ways to the condition and the treatment. I was diagnosed with MM May last year and have had 6 months Chemo June to December with relativaly few side effects.PP now down to 1.6. Prior to that I had Radiotherapy for Single Bone Plasmacytoma in my lower spine (Sacrum).Which has left me with slight Neuropathy in both legs and feet with partial loss of power in walking due to the tumour pressure and damage to the root nerves.I have now been refered to the Royal Liverpool University Hospital for SCT.I was in last week Monday and Tuesday for Stem Cell harvesting and await a date for transplant,but I am now in two minds as to wheather to go for it. Well I wish you well keep taking the tablets if its tablets your taking. Keep in touch on site, quite a bunch we have here.

Regards Dave. DMC.

[AndySParticipant]

Hi Dave,
I think we are sailing a parallel course. I too started treatment with radiotherapy on my thoracic spine with a vertebra pinching my spinal cord and have the same problems with my legs. As I'm feeling much better now and the weather is improving I'm hoping to get out and walk and do much more execise because I have been stuck indoors not doing anything for about five months. I think it's doing some good and I may be kidding myself, but, I think the numbness is receding slightly. Certainly my walking is more fluent now, I'm able to put my feet more or less where I want to and I'm more confident and go for longish walks on my own without worrying that I might get stuck. It might not help the MM but it sure makes me feel much better otherwise. Might be a while before I go for a run again though, which is what I was planning before this bl**dy thing reared it's ugly head.

Best wishes,
Andy

[KeithH17Participant]

Yes you're spot on David,MM cells do have the ability to switch off and lie dormant for a while before returning to wreak havoc.
The bottom line is there's still a vast number of questions to be answered regarding Myeloma and although we have travelled some distance there's still a very long way to go.
To find an antibody that can be injected in the way a flue jab is given is the way forward if one can be found?
This would mean when the disease returns it could be tackled by your own immune system thereby downgrading MM's status to that of a chronic illness.
The US are pushing on with this approach in earnest and I hope they can crack it asap although it could be 5-10yrs away before a breakthrough is achieved.

Keith.

[DMCParticipant]

Hi Andy, well it seems so,i try to go out and about as much as possible to walk and exercise my legs, i also go swimming which is of course good for all of the body.Trying to keep our muscles toned is the least we can do to maintain some semblance of fitness. Just doing what we can keeps us fighting.We just have to see what suits best.Keeping active and enjoying what we do!So onward and upward don't you think?
Kind Regards Dave. DMC

[GillParticipant]

Hi Andy

My husband has mm and was diagnosed in 2008 aged 53. He had an SCT in the summer of 2009 after chemo had got his mm down to "hardly showing" He relapsed after 18 months and is going for a second SCT later this year. After seeing his consultant today we are aware that he will probably not get as long in remission as last time but he has decided to opt for the SCT anyway.

He was well all the way throught his first SCT (please all cross your fingers for the second)He had no infections and just got a bit bored with me nagging regarding his diet (neutropenic diet can get a bit boring)

As for putting off your SCT until the Autumn??? All I can say is that we have trusted Stephen's consultant all the way through. If you trust yours ask if a delay would harm your chances. If he says yes then my view would be what is more important "a very important event in August" or prolonging whatever you have left of your life?

Good luck and kind regards from Gill

[brochoParticipant]

Hi Andy I would definitely reccomend going for the sct ,it is worth the chance of at least a lengthy remission from heavy duty treatment and more people seem to getting complete remission lately too . As Gill suggested talk it over with your consultant as to whether you can delay , most treatment plans are worked with you so tell them of your concerns If they advise not waiting then go for it , your family and friends would want you to have the best chance and I am sure will be understanding , perhaps you can have your own celebration afterwards Good luck in what you decide Bridget

[AndySParticipant]

Hi, Thanks for your thoughts.I will of course be guided in all things by my consultant and I am thinking more in terms of a wish list at present. These are such early days for me and I have no way of knowing how my PP levels will respond in the coming months. When and if they get to a suitable state and my consultant advises that it's the right time then of course I'm not going to argue. I'm already getting fed up with the routine of the drugs, being able to do things when I'm taking Dex and not much on the Cyclo. It's so frustrating, there is so much I want to do and the sooner I can be rid of them, if only for a while, the better.
Best wishes,
Andy

[DMCParticipant]

Hi Andy hope you are doing ok under the circumstances. While I was on Chemo I found it wise to take one day at a time because I found it easier to cope emotionaly that way, not being disapointed if one day I wasn't up to doing a lot when in fact I may have wanted to, if you can follow what i'm trying to say! I was cirtainly very glad when I came to the end of the 6 months course which was just 2 weeks before Christmas Yes!Bringing your PP level down is the prime objective so hang in there my friend grit your teeth and stay positive.
Kind Regards
Dave (DMC)

[PerkymiteParticipant]

Grit you teeth Yes, my South African family sent me a word to use [b][i]Vasbyte[/i][/b] it means bite hard. a loverly word I often use it 😀

[Author]

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