[MothasParticipant]

Hello everyone

My name is Tom, I'm 46 and live in London.

I've just been diagnosed as having MM after being in remission from Plasmacytoma for 6 months.

Plasmacytoma is also known as solitary plasmacytoma as it's an incidence of a single lesion rather than multiple (hence multiple myeloma). In many cases it doesn't progress to full myeloma but for most it does. It has for me.

Last year after severe pain my my shoulder they discovered the lesion and treated it with 3 cycles of cyclophosphamide and Dexamethasone followed by 5 weeks of radio therapy. It seemed to successfully zap it so I was happy.

Alas, rather than the many years of remission I was hoping for, I've been dealt a different hand of cards. They've found evidence of multi focal progression in 4 areas of my back, and I am now fully upgraded to the MM community.

The disease is in very early stages according to my specialist – lesions are present but 'subtle' and disease is not 'burdensome' and I will have a combined chemo and stem-cell transplant treatment starting after xmas.
I will be at UCLH and having the PAD treatment (2 cycles) prior to the SCT (PAD being Velcade, Adriamycin and Dexamethasone).

It's a 'sledgehammer to crack a nut' according to my specialist, but necessary in order to generate 'prolonged remission'.

treatment as follows:
-Zometa Bone strengthening prep before christmas
-2 cycles of chemo (4 weeks each)
-stem cells collected
-cycle of very strong chemo
-stem cell transplant
-3-4 weeks recovery with likely 3 weeks hospitalisation under isolation
-3 months recovery of immune system.

I'd appreciate any insights from anyone who has followed a similar regime or words of comfort.

all the best

t.

[meganjaneParticipant]

Hi Tom,

Welcome to the forum. My husband Phil was diagnosed in May this year with MM at the age of 43. He has just completed six cycles of PAD at St. Bart's in London. His stem cells were harvested yesterday and the transplant will go ahead December 17th. With PAD he had very few side effects other than being very tired but not being able to sleep (the Dex effect) and during the sixth cycle he developed peripheral neuropathy in his feet. Phil is also receiving zometa monthly. The PAD treatment has dropped his PP levels from 32 to 5 at the last count at the start of November.

Any questions you have about PAD please ask and Phil and I will help if we can. It is good news that they are treating your MM early, hopefully you will be able to avoid any major bone damage by treating so soon. Phil has had both of his femurs pinned since the diagnosis and he may need khyoplasty for his back next year but we are hoping that the rest of his bones stay in one piece 🙂

Good luck with the treatment and keep us posted.

Megan

[VickiParticipant]

Hi Tom,

Welcome seems a funny word, but this forum is so helpful to you all as those with the condition and us supporters, who give some help where we can.

My partner Colin was diagnosed in 2011 and has been on the myeloma x1 trial, resulting in an SCT at the end of October early November 2012!. it's not the same treatment as you but he is recovering quite well so hopefully that will give you some hope?, he found the SCT arduous, but he suffered mainly from the ulcerated mouth and some pain due to a rheumatic condition. He got off lightish with the upset tummy! It did seem quite bleak with Colin was diagnosed but that's because we'd never heard of mm and felt quite phased by the treatment. That said again on the positive side, the medical teams are excellent, new treatments are coming on line all the time and this is an eminently treatable condition!

I would also recommend that if you have a partner, that she uses this site as I've found this a godsend, both for friends on here, and the myeloma specialist nurses!

Vicki

[VickiParticipant]

Hey Megan,

Just noticed Phil has his cells harvested…..that is great and wishing you all the luck for the 17th. Start a thread up so that we can keep up and also give you both the support you will need 🙂

Vicki and Colin x

[tomParticipant]

A warm welcome from one tom to Another 😀

I had CDT 5 28 day cycles if my mind serves me correct :-S leading up to a SCT all in the year 2009 AC 😉 done me ill bit and now am up and at em drug free and just had a few drinks on the 3rd December to celebrate my Stem cells 3rd Birthday 😎

Good Luck in you road to remission and trust me you wont get lost as i am with you all the way and Tom-Tom's are good at navigation 😀

Tom "Onwards and Upwards"

[BADGERParticipant]

hello Tom
i am sorry you have had to join us but you will find much help and advice here I havnt had any of these treatments or a sct I had CDT with 3yr and 6month remission have just started on velcade i chose not to have an SCT as my kidneys were very damaged and i didnt want to finish them off completely with the heavy chemo needed
Stay well jo:-)

[HelenRParticipant]

Hi Tom,

I'm a fellow Londoner and also had PAD treatment, 4 cycles from June to September, and then a stem cell harvest in October. i'm not doing an SCT, due to the study I'm on and the fact I've had a Complete Remission.

You must be gutted to be having to go through it, but PAD seems to be a very effective sledgehammer, and it's definitely a good idea to whack the MM on the head before letting it make any more holes in your bones, because you can't really do much about those once you have them. But the treatment can get rid of the active disease and put you into total remission, so hopefully that's some comfort!

I'm trying to remember what the first two cycles were like. To be honest you may notice the side effects more if you're feeling quite healthy to start with. I was feeling pretty rough and didn't notice much! I've been off work the whole time. As Megan says, the whole regimen does really make you tired and the Dex gives you insomnia (so do take sleeping pills if you need a night's sleep, I'd take zopliclone a couple of nights normally). Then again, it does make you feel quite happy and energetic (one of my consultants said it's like cocaine…) and I remember more than one person I spoke to on those days saying I sounded 'perky'… Sometimes you can just use the Dex time to read things or do stuff… I think those were the times I really looked at the Myeloma UK website etc to undersrand what MM is. But you've had time to do that already… Then the days after the dex (which are also after the dox) you feel crap so don't plan to do anything except laze around. I didn't have any major stomach type stuff, think slight runs after velcade but nothing dramatic. I found the antisickness pills worked fine unti some sickness in the 4th cycle. My hair fell out towards the last week of the first cycle. But it's come back now! I remember having swollen ankles sometimes.

Anyway, some advice I was given was not to get depressed by all the side effects etc but just to see it as a good sign that the powerful medicine is working…

Do get in touch if you have any questions as you go through it – weirdly I seem to have forgotten all the detail already… Hopefully that in itself is also encouraging! Bad at the time but soon forgotten.

Getting to grips with the diagnosis and worries etc is obviously a whole other kettle of fish, tons of advice about that on here. Good to talk to a counsellor, accept that it's all a bit of a rollercoaster etc as it's a very extreme and unwanted situation to find yourself in. But it's ok.

Helen

[PerkymiteParticipant]

Just a quick welcome Tom, Got to take the wifey in to her "Xmas Lunch with the Girls".

I was diagnosed Jul 09 with a Single Plassewhatsit. It ate the 4th vertebrae in my neck and my head is now held up with internal scaffolding ? brilliant job. I have gone through the Sct, Nov/Dec 2010, and I am now on a plateau at 2.8 pp, I never did go into complete remission.

I note you put ?3 months recovery of immune system?. Can I urge you to take great care at this stage you just simple cannot be too careful at this critical point in your recovery. No visits from people with colds and go completely over the top with hygiene. [u]Follow the instructions [/u]you will be given when you leave hospital.

There is still a lot of life after diagnosis so I wish you all the very best in your treatment.

Kindest regards ? vasbyte

David

[MothasParticipant]

Megan thanks so much for the reply.

I'd be interested to know of any other side-effects that your partner suffered (hairloss etc). Also did he take time off work. I had 9 months off last year and would prefer to work as long as possible this time. I realise i can't work during the stem cell treatment.

Perhaps I'm being completely mad thinking I can work at all during chemo. Would be interested in other people's experiences.

all the best

tom

[MothasParticipant]

Thanks Vicki, I hope your husband goes from strength to strength.
As a matter of interest how is he bearing up from what is a month or so after his SCT?

I've done a lot of research into myeloma and although I'm thoroughly pissed off that my disease has developed sooner than I hoped it would, I'm hoping we're moving into a period of it being a chronic disease with all the new treatment developments.

thanks again

tom

[MothasParticipant]

Thanks mate, maybe I should call myself Tommy to avoid confusion 🙂

You sound good, I'm irritated it's getting in the way of an interesting working life for me.
I hope to return although I realise that I'll be having to take life in a different way than before.

best wishes

Tommy

[MothasParticipant]

thank you, this is a great forum. I've learnt a lot even in just the past 24 hrs.

t.

[MothasParticipant]

Helen that was great thanks for the detail. Very useful.

Great news you have saved SCT for another time and hopefully you'll never need it.
I think my bones are in pretty good shape but I'm a little bit nervous of the SCT.

I had Dex before. I hate it, it makes me really grumpy! And the lack of sleep, but I guess it's better than the alternative. Perhaps I'll ask for some sleeping pills.

Looks like I might need to splash out on some hats too….

tom

[MothasParticipant]

David thanks for your input.
Yes, it's daunting, I realise how vulnerable people are when going through these kinds of things.

I'm up for it though and I have a wonderful wife and family supporting me.

[meganjaneParticipant]

Hi Tom,

Phil has managed to keep his hair so far, it did thin out a bit during the first four cycles but since then it has stopped falling out and it was never noticeable that it was being lost unless you looked at his pillow!!

Work wise I can't really help. Phil volunteered for redundancy in January, we had sold the house and were moving to Devon. Phil finished work at the start of May and two weeks later he was diagnosed with MM. Luckily we were able to pull out of the sale of our house or we would have been homeless on top of everything else!!

During the summer I don't think Phil would have been able to work at all due to the surgery on his legs but once he was off the crutches he may have been able to work a couple of days a week when he was feeling up to it but most days he was quite tired. I think it is different for everybody and Phil has quite extensive bone damage so I think this has added to the tired feeling, it probably also depends on the job. Phil's job involved 12 hour shifts and I don't think he would have been up to that.

Hopefully your work will allow you to carry on as long as you feel able and then maybe change your hours or work from home if possible on days when you don't feel so well? I think after the SCT you need to take it easy and make sure your immune system has recovered before you go back but some people on this forum have returned fairly quickly. The main thing is to listen to your body and don't overdo it and beware of infections.

I hope this helps.

Megan

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