[SarahJaneParticipant]

It's been a while since I last posted, actually I did write a long letter a while ago and the web crashed and lost it all.

So in summary, SCT was in July, all went well with normal side effects, but was out in 16 days. Downside was I was in my lovely isolation room in the 2 hottest weeks of the year! At least I had air con and a widescreen TV.

Spent the rest of summer recovering and pottering in the garden, regular visits to clinic etc, but all has gone well and my 100 day check showed all levels ok, PP was less than 1 (don't think it ever reached 0) and BMB was low, can't remember figure.

Then the offer of maintenance trial, as I had been on the Myeloma XI trial getting RCD. I then went into turmoil, I suppose with all other treatment it was a given I would have it, but now it was optional and I couldn't decide, mixed feelings about being a guinea pig, pill taking, QOL, etc. Any way decided to go for it and let the trials fruit machine make the choice for me, REV and Vorinistat… And collected them today, start them on frid. very nervous, hope I don't get side effects, and will be glade when I get a few cycles under my belt. At least I can come off it if I don't do well , Revlimid was always ok and the dose is much lower this time, it's the Vorinistat that I'm unsure of, and it seems there isn't many patients on it?? Will post a separate letter for this, every time I try and search on this forum it says there are no results???

Happy to answer questions on SCT, etc.

Best wishes
Sarah Jane

[eveParticipant]

Hi Sara Jane

Well done,you have nothing to loose going on maintenance as you were on CDR anyway,you will not find any results for maintenance ,you could try the Myeloma Beacon,as US is always ahead of us.

It's time to start planning ,all those things you keep putting off,good luck.Eve

[mhnevillParticipant]

Hi Sarah Jane

So glad your SCT did it's job. I do hope you have a very long remission and that maintenance works well for you with no side effects. One hopes that eventually they will find maintenance drugs for MM that work as well, and with as little side effects as the two maintenance drugs for breast cancer do. Well done for being ready to take part in the Trial.

Love and best wishes.

Mavis x

[SIMSParticipant]

Hi
Can I ask you, what were your light chains when they allowed you to go on maintenance and stop or not start chemo? thanks, and well done!

[mandyphillips41Participant]

Hi Sarah-Jane
Well done so far – I had my SCT in may – spent 24 days in isolation and also for me the weather outside was fab 🙁 lol typical, just my luck.. I have had constant awful side effects from the off. They asked me about going on the maintenance programme and like you I had very mixed feelings, I went to see my oncologist on Monday and told him that I had decided NOT to do it. I said that if anyone would experience side effects it would be me. He replied "Well you certainly have been throughout the mill" I am still confused about whether I have made the right decision… what if it helps my remission last longer is a question I ask myself constantly… oh well I said No and thats that. How long ago where you diagnosed and how were you throughout the Trials?
Good Luck with everything
Love Mandy xxx

[DavehoganParticipant]

Hi Sara i finished my sct on june , ive been back at work sinse sept 1
I was given the same drugs as you
10mg Rev
3 x Vorinastat
I tried them for 10 days but i couldnt handle the tiredness
I am now just taking 10mg of Rev

My BMB after sct showed 0

Everyone reacts differently and others i spoke to had no side effects.
Good luck
Dave

[SarahJaneParticipant]

SIMS
Sorry I don't know what my light chains were, I know if you have had a SCT they like to start the maintenance trial close to 100 day post SCT. It was because I had done the Myeloma XI trial I had the option of doing the Maintenance trial. Having said that my blood results were within reasonable ranges and my PP was under 1. I only did 5 cycles of RCD as I responded well to treatement and my PP came down to 2, then they started the SCT process.
Not sure if this helps?
Sarah Jane

[SarahJaneParticipant]

Hi Mandy
I think the descision making is so hard, especially as it is optional and individual. I don't think you can win either way, I was very close to saying no, the thought of subjecting my body to more toxins, more chances of secondary cancers etc etc. Perhaps in 5 years time when they have more data it will be an easier choice, but I just tell myself I can stop if I dont want to continue, and my consultants have been very supportive, at the end of the day they think my quality of life is more important and there is no point suffering side effects that impact on my life. The other problem was I am 45 and potientialy I could be taking maintenenace for years – again is this good for the body? If only someone had a magic ball to tell me when I will relapse LOL.
Sorry you suffered through your cycles, I was able to work through all of it, with 2 sofa days every time I stopped the DEX. Constipation and stomach cramps were my worse problems, and I tried every remedy going, but nothing worked. First attempt at SCH failed but apparently REV can hamper your body, second attempt was fine (but I had expensive booster jabs the night before). SCT was everything they said it would be, had 1 spike in my temp – but I think the nurse put the ear thermometer in wrong, so I had antibiotics anyway. Didn't eat for a week, was on a drip but refused tube feeding. I had put on enough weight from comfort eating as a precaution! But as soon as neutrophils came up I managed some Ben&Jerrys ice cream, witnessed by the nutritionalist – who was sent in to check on me. A throat that felt like it had been slashed with glass was painful, I couldn't swallow saliva and spat eveything out, so ladylike, but this soon faded as levels went up.
Have since had my 2 sisters tissue matched in case I need their cells for a donor stem cell, one was a match, but havent talked about this route yet as I hope I don't need to for a long time.
Hope you are feeling better now and concentrating on enjoying life, I would love to be pill-free, I shall see if the stomach cramps I have had all week subside soon, otherwise I may go pill-free too
Sarah Jane

[SarahJaneParticipant]

SIMS
Just looked at an old chart I had created and it had my light chains on it
End of Cycle 1: 95, End of Cycle 2: 29, End of Cycle 3: 12, End of Cycle 4: 9, Have no idea what it is now – perhaps I will ask at next Clinic, not sure what it is meant to be?
Hope this helps
Sarah Jane

[jmsmythParticipant]

Hi all

I'm so interested in this maintenance after SCT. Frank had his SCT beginning of March. He was diagnosed 2006 and smouldered for 6 years. Maintenance has never been mentioned to him – is this an age thing? In 2006 he had a BMB and has none since. I read on forum about people having BMB regularly. In 8 months since the SCT he reckons he felt better befor he had it. He just seems so tired all the time. Would appreciate any info

Jean x

[meganjaneParticipant]

Hi Jean,

I believe in the UK maintenance treatment is only offered on certain clinical trials and even then there is often a radomisation process to see if you go on the maintenance arm or not. My husband Phil was on a clinical trial but in his case the trial was to see if using velcade as a first line treatment could delay the SCT. In Phil's case he did not achieve a good enough response after 6 cycles so he has had his SCT. He has not been offered maintenance and is now only on Zometa for another year and aciclivoir (this will stop in a month). Phil has had quite a few BMB but this was part of the clinical trial protocols so this also probably differs between trials and between hospitals.

Phil still suffers from fatigue 11 months on from his transplant, he went to bed at 9pm tonight :-). I think the tiredness is perfectly normal.

I hope this helps.

Megan

[jmsmythParticipant]

Thanks Megan that really helps. It was really bothering me when it read about people on maintenance therapy. Now it makes sense. Frank started Zometa again on Wednesday. His consultant stopped it as phosphates/potassium was quiet low. She is now on long term sick leave and her replacement – I don't have much confidence in him – said he could have it again. Frank fell asleep on sofa about 8 tonight. I tried to wake him but he snored at me 🙁 . He will probably come to bed about 4 and read for hours !!!

Hope Phil gets his strength back soon. Tom (the elder) sorry tom if you read this, but he gives me hope that things will start to get better for Frank soon. Frank is a gin drinker but I'm trying to get him to change to vodka – it seems to do Tom the world of good

Thanks again Megan for info – can relax a bit – till the next problem comes along

Keep well
Love Jean x

[tomParticipant]

Hi Jean and Frank

As for the maintenance treatment I was never offered nor had any, I started off in 2009 (Feb i think) on CTD had 5 cycles of that then went in to have stem cells removed and stored then had SCT in December 2009, then went on to Zometa just for two years only.

As you know I am in remission and drug free, Going back to the BMB I have had a total of three (3) one pre diagnosis 2nd one post CTD and the last one was 100 day post SCT.

Do I ache yep sure do but not enough to take painkillers, do I get tired/weary yes i do and my young bride (elaine) knows before I do/admit it he he, do I get out of breath Yes i do try getting me to run or walk up stairs twice in a row and am beggered trust me lol.

all the above bad bits I and my consultant put down to just getting older as we have no sign of the MM in my system, I think because we have MM we/I think every ache every extra puffing we put down to MM ? and that's Good because it shows we are on our toes and keeping an eye out for it.

Keep your eyes open at all times as its a sneaky wee bugger this MM, but most of all go out and enjoy what and when you can, as for me I dont make plans I dont buy tickets in case am too tired to go but when I am OK (and I am most of the time) I let it rock 😎 (in a myeloma sort of way lol) Jean I have to tell you Gin was Vodka before they changed it to Gin, so if Gin is made from Vodka Frank is a Vodka man 😎

Stay well and strong

Love Tom Onwards and Upwards xx

[jmsmythParticipant]

Thanks for that Tom – you do me the world of good. So Franks ok with the Gin – good one 😀 he woke up with a damn cold this morning.

Take care
Love Jean x

[VickiParticipant]

Hi all

Re the maintenance Colin was offered it and said no….we try not to think about it and hope for the best at all times.

Jean, Colin goes through some real tired times still. There will be times when he is full ish of energy and does loads (like this afternoon he was up a ladder oh oh and cutting the top off a tree in our garden…..then tonight he is falling asleep ad snoring so loud I need to turn the telly up LOL! It's such a roller coaster, at times I think Colin was better before sct but on reflection I doubt it…..we just forget. Colin's recipie for well being is whiskey, however I do wonder whether the vodka is really the wonder drug. Jean we too have a new consultant, at our last appointment he kept saying fingers crossed…..not what you want to hear, doesn't fill with confidence, hoping he is relying on medical knowledge not luck!

Toms right, there are some real peaks and throughs with the energy, running etc but try to go with the flow…..easy to say, hard to do, I know! 🙂

Hope you guys are all ok 🙂
Take care all

Vicki and Colin x

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