This topic contains 34 replies, has 14 voices, and was last updated by 
SharonM 13 years, 6 months ago.
Hi Debs
I'm also on the Myeloma XI trial on the RCD treatment. I've mentioned my side effects in other posts, so won't bore everyone again. But if you (or anyone else on the trial) ever want to compare notes, feel free to contact me.
I'm being treated at Nottingham City Hospital, Centre for Clinical Haematology, under Drs Cathy Williams and Jenny Byrne. They and their team have so far been fab, very responsive, supportive, helpful, open to complementary therapies and mostly very human.
I'm also going to go to an Info Day here in Nottingham.
I thought I'd give another update, just in case it helps those undertaking the trial.
It seems like I have plateau'd with my treatment on revlimid – my paraprotein has dropped from 50 to 23 and my bone marrow only by about 15%. Perhaps I'd have done better with more side effects??!!
Anyway, all the results are back now and they classed me as having 'partially responded' and so I was put into the randomisation for either velcade or to go straight to transplant. At first I'd been really anti the transplant route with a pp of 23, but they explained why that didn't really matter (all to do with how the harvest works and also about how you can have velcade if necc afterwards and it helps in just the same way). So the good thing was I didn't mind too much which route I went.
And the answer is that I started on velcade (with dex and cyclo) yesterday for at least 4 cycles. I think I'm happier….at least this way I won't wonder 'what if' if I have a short remission post transplant etc. And hopefully the velcade will knock the MM to the ground!
For those of you that might go through it, it is about a 4 hour trip in the hospital. You give blood and have to wait for that to come back before the prescription can go to pharmacy (the drug has a short half life and s v expensive, so they have to know you've arrived and are fit to take it). Then I was hooked up to fluids for an hour. And then we just had to wait for ages for it to come back from the pharmacy. It finally came at about 2.30pm and apparently it normally doesn't come back until 1pm till 2pm. It will be a bit of a bummer with school pick up (we live an hour and a half from the hospital!) but we'll manage.
Anyway, nearly 24 hours on, and the side effect so far is that the lack of sleep has kicked back in from the dex. Obviously the revlimid helped me last time and stopped the problems when I took it in the evening…no such luck this time, and I wake every 20 mins to hour! Oh well, hopefully only for 3 months.
Hope everyone is doing ok on their treatment etc.
Debs x
Hi Debs,
I just wanted to say that I found Velcade very effective. It batted down my pps from 46 to 3 – way lower than CDT ever got them. I also tolerated it well and was able to live a "normal" life if you factor in the twice weekly visits to the hospital.
Of course there were a few glitches but nothing major and they were sorted out without much trouble. I am still debating going down the SCT route and as I felt so well after the Velcade I once again declined. I managed 14 months without needing more treament and am now having Revlimid. Let's hope it is equally effective!
Jen
Hi Jen
What great news about your pp levels – how many cycles was that on? I am hoping desperately for that to happen to me. I got hit on my second dose of velcade yesterday. Was fine till I got home and then flaked out totally and was very emotional. It was out of the blue too, as I hadn't expected anythimg much for a couple or weeks!!! Luckily some friends had the kids till my husband got back and an early night and some sleeping tablets helped….almost normal today except for the dex cheeks!!!
I've heard others talk about not having the transplant. The trial I'm on means it's the next step (although obviously I could pull out). I think if I didn't have kids I'd be tempted but I'm worried that if I wait and end up with serious issues it could affect my quality of life with them. They're only 4 and 6 so it would be good to see them a bit older before we try other things.
Good luck with the revlimid….try taking the dex in the morn, and the rev in the evening….didn't affect my sleep that way. But I think I may be a bit abnormal!!!!
Good luck Jen
Debs x
Debs, I had 6 courses of Velcade. I couldn't have the very final dose as the soles of my feet went numb so they decided not to give it to me. My feet did recover, well, back to what they were before, anyway, so it wasn't a problem. And I felt great after all the gunk had got out of my system!
With you having such young children then obviously you need to explore every option. My family is grown up and the thought of feeling so ill after the SCT, and maybe not being able to look after myself, has been the most off-putting thing about it. I am keeping it as a final resort but definitely haven't ruled it out.
I am with you with the glowing dex cheeks. I look as though I spend my life outdoors in all weather! I take the dex of a morning and the Revlimid at night but haven't been sleeping well this week. Hopefully, I shall get a few hours tonight as it's a non-dex day.
Here's hoping the Velcade works as well for you as it did for me.
Jen.
Hi Jen,
Yes they've warned me about the numbness esp in the feet – and said it's not worth carrying on and risking long term pain for the sake of lowering the pp…..sounds like you did the right thing.
Shame the revlimid not working in making you sleepy at night….took me a couple of days for it to kick in doing it in the evenings. Last night had to resort to the sleeping tablets as I just couldn't sleep at all!! Hate taking them but sometimes, needs must!!!
Take care and keep in touch
Debs x
Hi Debs I am so glad they put you on the revlimid and you did not have to make the decision about going straight to SCT or coming off the trial. As you know I am on 3rd cycle of CDT on the trial. Not going too bad except for the Dex cheeks and going up by two dress sizes 😀 My PP went from 36 to 29 in the first cycle and she believes I will be 20 when I get my 2nd cycle back, but I am not getting too excited as I know it can slow down and I may be in the same position as yourself in a months time. They have doubled my Thalidomide and it knocks me out at night, but also makes me tired during the day, but if that is all I have to moan about I think I should shut up. Keep trying to post on here but I dont seem to be able to unless I reply. Must be computer Dex 😀
Kay x
Kay if you click on which ever of the discussion forum headings that you want to start a new thread under and then scroll down to the bottom you should see an option to start discussion. EG click onto discussion forums click into treatment scroll right down to the bottom of the page and click on start discussion Regards Gill
Just a quick update for anyone who is on the Myeloma XI trial/ interested in Velcade treatment.
I've just finished the first two treatments of cycle 2, and got my cycle 1 paraprotein results back….have gone down from 27 to 15, so I am over the moon, especially as my consultant had warned me that I may well not see a decrease in the first cycle.
I've found the treatment worse than Revlimid as it really flakes me out and I am pretty useless apart from managing the kids! How people keep working on it is beyond me!! You are better people than me for definite..I am so glad that mine finished last month.
I also had slight peripheral neuropathy from weeks 2-3 although it seems to have calmed down a little after my week off. The consultant is surprised as it is quite early but doesn't seem to worried yet, as the PN is pretty minor and doesn't give me any pain, just a bit of discomfort.
Had some lower back pain that has started today too, but saw a doctor, and again he didn't seem too worried, so I'll see how that goes over the weekend!!! It is pretty horrid but I don't think it is MM related..who knows though.
Anyway, that's all for now…off to bed now!
Debs x
My dad was diagnosed with multiple myeloma in January, and following a biopsy, was offered the chance to be on the Myeloma XI trial at one of South Yorkshire's leading hospitals. It was sold to him as if it was the only real option, and that it would add as much as 10 years onto life expectancy. As my dad wanted to be with us as long as possible (and relieved he wasn't diagnosed with terminal cancer), he believed in this and signed up in late March.
He was randomly selected to be on the Revlimid arm of the treatment (rather than CTD), and after the first day taking the treatment in hospital, returned home to continue it there. on the morning of day 11, we contacted the hospital as he was feeling unwell (high temperature) and he returned to hospital, where he remained. He had been taken off the co-trimoxazole antibiotics the previous Thursday as they'd made him come out in a severe rash across his head (at first some thought it was shingles).
In mid-April, after having been in good condition (apart from some minor concerns about the liver and kidneys), he deteriorated rapidly, and was unable to communicate with anyone apart from odd random words. After a week of this, and appearing to be in severe pain, he passed away over the Easter weekend, with the doctors feeling it was a reaction to the trial drugs (Revlimid, Dexamethasone and/or the antibiotics), and the post-mortem confirmed this was a contributory factor (the chemo treatment and the myeloma).
The reason i'm posting is just for those who haven't committed to the trial yet – just make sure that whoever is trying to sign you up is doing it for the right reasons – and that ALL potential risks are examined. The man in charge of my dad's trial admitted to us last week that they wouldn't/couldn't tell us all of the likely or possible problems of going on the trial (as opposed to just taking the standard treatment) as it would 'scare people off going on the trial', including a recently diagnosed case of myeloma of the brain fluid they'd had, which they didn't make us aware of as 'it was only a 5% risk of happening'.
And one thing I have learnt from this horrible experience – if you are unfortunate enough to be diagnosed, just hope that a) you're not in this area, and b) that you don't have to deal with a specific McMillan nurse – I was led to believe McMillan nurses were well trained in dealing with relatives in these difficult situations, which when you're being told there's nothing else they can do for your dad, you really don't need to see the McMillan nurse sat alongside grinning away as if she's watching a tv comedy.
Good luck to all of you on the trial, hopefully ours was one really unfortunate freak outcome and you'll all receive better care and luck – I would hate for any of you to suffer as we have, particularly the conflicting information being given depending on which doctor is present.
sheff
This is to you personally ,I need to Know more,I do not know if we can post are email address on here, but I do need some facts on this.
My husband was diagnosed in January on myeloma x1 trials ctd side.
He is in hospital at this moment in itu.getting better slowly from infection but what concerns me,is the mental state,I do not know if it is drugs,or myeloma,has been getting very confused for a long time.He does have lesions on his skull.
Sheff Myeloma is a terminal cancer,no cure only buys time,I have had to ask a lot of question before I got answeres;eg mri report,any lesions, bloods, bence jones myeloma,all soughts of questions.
My husband on admission to itu was told,they cannot promise he would not die,we were married in itu on 26April at 7 0clock at night.He is only just out of danger,do not know yet about damage to his lungs.
These people on here need hope its a journey we are on,thing go wrong and it makes us angry,If Slim had died I would have thought he is not suffering,I cannot even begin to tell you how elated i am,that he is alive.
I would like to hear from you about information concerning myeloma of the brain fluid
The possibility of myeloma of the fluid surrounding the brain was something we only found out about a few days prior to death – the man in charge of the trial had been on holiday for a week, and when he returned my father had deteriorated significantly, only able to say odd random words, no real eye movement (but lots of arm and leg movements) – the brain fluid myeloma was something he suggested was a possibility for why that had happened, or could've been a brain bleed or a stroke, they couldn't perform a CT scan to confirm this.
He did say that if it had been any of those things, they couldn't have done anything to correct it anyway… though as it turned out it wasn't in our case. But he then said they'd recently had a similar case, and that the risk was about 5%, but didn't elaborate on it further, i'm afraid.
Glad to hear you were able to get married and that he's still in their fighting, as for the confusion my dad had been confused/dazed quite regularly prior to the last week, not surprising with the mass of tablets he was on, and the effects of the steroids when he was first in (seeing all sorts of disturbing things at night that really scared him).
As for whether it was terminal or not, what I meant was that we were told it was treatable with tablets, and should be looking at the bare minimum of a year or more (certainly not 3 months!), dad was pretty fit and healthy apart from back pain. Had they said at the time that he'd not see out the year, we could've prepared ourselves and him for that, and sorted out his affairs etc.
Good luck and make the most of all the time you have, particularly while you're able to communicate properly with each other – nothing worse than not knowing if someone you love even knows you're there, or if they're in pain, for a whole week.
I am so sorry to hear of your loss.
I don't know if this is helpful to you at all, but I would like to say that I am on Revlimid on the XI trial and although I've had some really unpleasant side effects from it, in fact I hate it – it is actually working on the cancer for me.
However, when I first got the tablets, I dutifully read all the patient information leaflets in each box and the one for Revlimid had the longest list including just about any possible symptom imaginable… they're even in groups of Very common, Common, Uncommon and Rare side effects, including death!
I did feel well informed, both by the team and by the written stuff and felt I had a choice, but it wasn't a great one – take drugs and potentially live for 10-15 years or don't and probably have about 3 months or so. Ultimately, from what you've said, it sounds like it was the myeloma rather than the drugs that affected him. Sorry if I got that bit wrong.
Also, if he'd not taken the trial, he'd have been on Thalidomide, which also has a very long list of side effects. I think once you start taking drugs, you're open to anything and we all potentially respond differently.
I'm generally quite flippant about it, because I recognise that we don't have very much control – nor do the doctors – they're just doing what they think is the best possible. But for the people who lose someone, either to the disease or to a horrendous side effect, it really is not funny at all. My thoughts go out to you.
Jet
Hi Sheff,
Like the others on here, I am so sorry to hear about the loss of your father. I think it hits us all hard everytime that we hear of someone passing away, but it is even harder when you know that the family have suffered so much with the way it has happened. All my best wishes are with you and your family over the coming weeks and months.
I would have to say that I echo what Jet has said to some extent. I started on this trial with very limited side effects and to date, whilst both the revlimid and the velcade I have been on haven't helped for long, they have done quite a bit towards what we needed. I have been lucky with side effects (although the revlimid has been harder) and feel very lucky for that.
I think Jet is right that we all have to take chances with this awful cancer. And your dad probably did too. And that must be really hard at the moment to know that he was taken so much earlier than you had been led to expect and certainly earlier than you would ever have wished for. The thing I think we learn about Myeloma, is how individual it is. How one person responds is so different to another. And how the myeloma itself mutates seems to be very different too.
But perhaps none of this is very helpful to you at the moment in which case I am sorry if I have said too much.
With lots of thoughts and prayers for you all
Debs x
Just what I need to read after getting the call to go into Sheffield for a few days for a BMB, Zometa and the Myeloma XI Trial. Myeloma effects us all differently as do the drugs we need to take to fight it. I haven't the time to write much now but I've felt increasingly wobbly over the past month or 2 and the time has come for me to take that chance with treatment.
Wish me luck.
(I feel I need it now)
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