Great to hear from you Andy! Your vigilance paid off, and sheer willpower and determination (and great doctors it sounds like).
No need to reply but I hope the walking is progressing well and wanted to say hello (been wide awake on Dex all night so back on the myeloma sites catching up!)
Every day is indeed a gift, so enjoy today and here’s wishing you many many more,
Helen
Thank you Eve for writing (now and in the past) and I really agree with what everyone says about how great it was that you wrote, as I was online a lot at the time you wrote a lot. I also meant to say at the time that I loved reading about your incredible adventures off to France on your own for the first time, you really brought it to life in your messages, very dramatic!! It’s lovely to hear how you are doing. Actually there was an interesting thing on Radio 4 recently (you can still get it online – Robert Peston and Eddie Mair interviewing Julian Barnes, the novelist. Both Julian Barnes and Robert Peston lost their wives, and talk very openly about it (and say that normally women are betting at talking to them than men!) They also refer to a book by Julian Barnes that sounds good, about his grief. Of course it’s not like everything is fine now after a year, although things do evolve – they are good at explaining that somehow.
I mainly took a break from the online myeloma bubble during the last year or so – I have to be a bit selfish and do whatever works best for me at whatever point. But I’m back on treatment now so think I’ll be popping in a bit more – the solidarity does help so much. It’s refreshing not having to try to explain things to people who can’t really imagine what it’s like, but talk to people who get it! But in my case if I don’t write anything it normally means I’m off enjoying myself 🙂
Keep happily swimming outside the bubble and doing whatever you want 🙂 And pop in from time to time!
Helen x
Hello,
I was on a trial that deferred SCT if you got a good response (called PADIMAC). I responded immediately to the treatment (which was velcade, dex, doxurubicin, oddly known as PAD). After 1 cycle all my results were totally normal – I’m light chain only. This was from being ISS stage 3, lots of bone damage, some kidney and liver damage, throwing up with hypercalcaemia, bone marrow 90% cellularity, pneumonia etc. My kappa light chains were something like 1300. They came within range and right down to 0 I think. I had to do 4 cycles of PAD which was the minimum, so that was June to Sept October 2012, and a stem cell harvest in October 2012, enough for two SCTs. I did a Minimal Residual Disease test on the trial which was MRD negative – ie really no evidence they could find. I just read the preliminary results and only 4% of people out of 150+ had this. Back to work, back to life, a lot to process but had a good year, travelled, etc etc. I was obviously hoping for 3-5 years, 10 years… and that hope is very helpful so hang onto it, I’ve met plenty of people like that!
I however relapsed around September/December 2013 – kappa lambda ration went out of range and wrong ratio, up to 26, 59… not high at all but BMB and MRI skeletal survey confirmed it was back, and starting to cause lesions. I faffed around a bit looking at trials and second opinion, couldn’t get onto a trial so I did VTD and then did my SCT June 2014. I wasn’t quite in CR before the SCT, although VTD did help. I was in CR afterwards, so it definitely did something extra. Again, I had a really good spell being drug free (which personally I value a lot). And then my numbers started creeping up in April (nobody worried but I could see the trend) and a BMB in August was 30% again, so I have started CRD. I’m considering doing an allo as I have two excellent matches. I could do a second SCT but the general advice is a second one doesn’t last as long – although of course there are exceptions. I think the figures for ‘mini allos’ aren’t so bad – reduced intensity conditioning or RIC. But I still feel like I need to understand more as it’s such a huge decision, GVHD etc to cope with possibly. It’s a very personal choice. But as we know (especially with NICE etc) it does get scary when you feel like you are using up options.
But leaving aside me, I think you are definitely right to do the SCT. I’ve no idea whether I’d have got a longer remission if I’d done mine at the start – I suspect maybe I’d still be at more or less the same point now, but probably I’d have had a good 18 months to 2 years in one go, maybe then a second SCT. But who knows. I think I have a very fast-moving myeloma (has responded to treatment fast but comes back fairly fast, although it does at least get a drug-free remission which is not to be sneezed at I realise). I think it’s always better to assume you’ll be one of the lucky ones until you find out anything which says otherwise… No point in ruining the good times worrying about the bad times, you end up going through it all multiple times (worrying in advance and then whenever it finally happens). Once is enough! Easier said than done, of course. I definitely think it really helped me to get into sCR and CR, it meant that I had a good 6 months or so each time when the numbers were really right down and although they roots may have been growing (the iceberg was creaking?) it was all at such a tiny amount that even doubling or whatever wasn’t detectible… but once it’s a bit higher then it moves faster. But there are tons of people who have a very different profile – they dont’t ever get into CR but PR or VGPR, but have longer remissions, and a sort of gradual slow creep when they come out of remission.
Hope that is of some help! I’m also on Dex…. 😉
Really must to go bed though…
Hx
Hooray! Wishing you both a long time with myeloma as far as possible in the background after dominating life for so long! Make hay while the sun shines, gather ye rosebuds while ye may and all that 🙂
Helen x
Hi Andy,
Thanks so much for taking the time to share this, it’s so important. I hope you get out very soon. Pneumonia and unexpected hospital stays can be miserable, and missing a holiday is just gutting. I am crossing my fingers that somehow you are able to do something else instead this year – Canary Islands?? Or a nice UK weekend away to make up for it.
You’ve made me sit up a bit – I had pneumonia right after I was first diagnosed, and as it was so extreme I ended up in intensive care for one night (and it delayed my leg op which delayed starting treatment so it was all quite hairy as the myeloma was really eating me up at the time). I remember it being so extreme, and with a specific crackly noise in my chest, that I tend to think ‘Oh this definitely isn’t pneumonia’ if I feel a bit rubbish with a 37.5/ 38 temp, but you’re making me realise it’s much better to err on the side of caution.
Just to share an example of how NOT to be, I started CRD 10 days again, felt rubbish for 4 days, finally felt better on the Sunday…. but then shivery etc going to bed, really really tired, and found I had a 37.8 and 38 temp. Somehow I got confused and just followed the advice I had last time in remission, so I took paracetemol, kept checking temp, it didn’t go over 38 and dropped after a couple of hours. I had a slightly dodgy cramping stomach the next couple of days but not proper diarrhoea. Temp tayed down for 6 hours, came up. Took parceteoml. Finally phoned the on call haemoatology (this was bank holiday monday) and they told me not to take the paracetemol as it masks the temp, but to wait for it to wear off and go to A&E if it got to 38 again… and then she said ‘technically 38.5’ which confused me. I now realise she should have just told me to go in anyway. Long story short, it was fine all day but 38 again at 10pm, but I couldn’t face going in so I went the next day, they gave me IV antibiotics, did lots of tests, no probs, and the temp was also fine the whole time I was there. They discharged me to get oral antibiotics and then come back if it was 38.5, probably a virus. By the time I’d got the drugs and was waiting for a taxi I suddenly felt all hot and crap, and temp was 38.1. So I just walked straight back round and ended up staying not just Tuesday night but all the way till Friday 6pm. Bit crap as I was stuck out on a side room on another ward, and my main team really busy so I spent the whole time thinking I was just about to go home, only to have someone very junior eventually turn up and tell me i was staying another night, and another night. Still, much better to err on the side of caution, I realise. My neutrophils dropped and a couple of slightly weird blood tests so they just wanted to keep an eye on me. But I’m back on the chemo again as of today, for Week 2.
Things I’ve learnt (might be useful for people in similar situations to me – I live by myself and, er, other than the myeloma am generally in good health so always feels a bit weird going to A&E as they tell me how well I look!)
– don’t question it, don’t think about it too much or ignore it, go straight to A&E and do not pass go. On chemo you don’t have to wait, they take you in immediately so it’s really no major thing (and Uber is very effective for me in this situation, much as I hate the company)
– have a bag already packed for hospital with clothes, snacks, phone charger, books, overnight stuff etc, so that I don’t put it off because I feel too tired to get organised and just hope it’ll go away! My temp always seems to rise at night and I always think it’d be better for me to stay in my own bed, but at the end of the day these things can get serious quickly so you just have to be sensible and go
– I’ve set up a Whatsapp group with a few of my nearby/supportive/flexible friends, so that I can just send one message and someone will be free to come and hang out. This time I didn’t think I needed visitors because I thought I was about to leave the whole time… But I’ve realised you just never know, and company is always nice.
Bit of a long message…. good old Dex day today… hope it’s useful for someone out there!
Helen
Dear Eve,
I’m so sorry to read your news – at least just in time to wish you all the best for the celebration of Slim’s life tomorrow. We’ve never met obviously but you both come across so vividly in your posts. I can see that you were very lucky to have him in your life and he was very lucky to have you there fighting his corner. You must have so many memories – and now all the myeloma bits can start to fade into the background alongside the other more important ones. I’m very impressed that he was a marine! I don’t know if you’ve seen that there’s a ‘marine commando school’ programme on currently – incredible what they have to do, and you can see the strength they need both physically and mentally. Even if physically the myeloma got the better of Slim towards the end (which none of us can help) he clearly had the mental strength to cling on and beat the odds for as long as humanly possible. Very inspiring for all of us.
Thanks so much for writing on here and I’m glad to see your sense of humour is still shining through!
Thinking of you tomorrow and beyond,
Helen
PS I don’t want to steal your post but as I’m writing and I hardly ever do: I’m doing really well. Day 81 after my SCT. Still off work and enjoying feeling better than I have all year. Just bought a new pair of hiking boots – went up & down Box Hill yesterday and off to Spain in a fortnight to walk a bit more of the Camino de Santiago with friends – we do it every year & I’m so glad I’ll make some of it even though I’ll not do all the walking. Onwards & Upwards, as Tom says!
Ha Tom I was also awake from 3am to 7am this morning, though I then did crash out for a bit afterwards till 930am. Good old Dex eh?
July is probably a bit optimistic for me too, that would only be I think if I did just 4 cycles and then everything went very fast in terms of tests and admin and faffing around. I’ve already done my harvest so that saves a bit of time 🙂 But I guess it’s more likely it’ll be a bit later. I just want to get it over with and I quite like the idea of being out and recovering in August while it’s still sunny… But am trying to remember it may be much later.
So it’s a fair race!
Helen
Hi Sarah,
Glad it was helpful and thanks for letting us know. I hope the Dex makes the difference. It’s true that even ‘no rise’ is better than the way it’d be shooting up if he wasn’t on it, so maybe it’s zapping some of the clones but not all of them and another thing in the mix may help that. I hope so.
I know you’ve heard this before but myeloma really is so individual, so what works for one person is also very personalised, I always think it’s like finding the right shaped spanner for your myeloma – and sometimes it takes a few tries, but sadly they don’t know enough to get it right first time yet always. Essentially it’s lots of sub-diseases they haven’t quite worked out yet. I had PAD first time round, and all my light chains vanished after one cycle. I know several others who had PAD, all under 50 like me, fit and healthy otherwise, so in that sense similar – but with a total range of response, in terms of speed and ultimate end ponit. From rapid drop like me, to slow and steady drop followed by SCT, to slight drop then plateau and had to try a different treatment which then worked better, to didn’t work at all but then another treatment did. And some of the people I met with the longest remissions (still in remission now) had a failed treatment first, then a second one which worked, then SCT and all good. My response was great but didn’t last so long, although I’m hoping the SCT will help next time around. So in some ways it just doesn’t feel like we have the same disease, we all have our own personal one of the Heinz 57 varieties, with some things in common and some not.
So it’s good to keep positive and see what works in practice, even though it must be very demoralising hearing the lack of effect for now – still worth trying the adjustment before moving on if necessary. Trials just record average treatment effect, overall percentages of response and median remission length etc, but that doesn’t necessarily tell you what will work best for you, if you are an outlier in some way genetically. Sometimes it’s just a case of suck it and see!
Maureen, it’s so great to hear that Ian is so much more mobile than last year when he was stuck in hospital for so long and when he was first out and it was tough. Really nice always to read your posts and see you getting out and about!
Helen
Hi Tom,
Yup fully harvested! Bumper harvest in October 2012 so hopefully they’re all safely on ice still.
Not sure yet about timing as it depends how many cycles of VTD I do, and I don’t have any results yet to help me guess that. I think the earliest I’d do SCT would be July, probably later I guess.
Race you!
Helen
Good luck Keith and thanks for posting! I’ll be doing SCT later this year.
Do keep us posted… But only when you have the energy and feel like it! I hope it goes really well for you and is a big anticlimax (that’s my ambition!)
It’ll be we’ll worth it when it’s all over and a distant memory anyway.
Helen
Hi Tom,
Nice to see you’re keeping in those good spirits. I’m on week 1 of cycle 2 so in following along behind you… Also velcade and (lots of) Dex but with added thalidomide, VTD. You’d have been told not to drink on that though, so it’s a good thing you can still drink your pints (and vodka??) Though I did check and it’s not like if you have the odd drink you instantly throw up or your liver explodes or anything… Just they say thalidomide can make you drowsy and alcohol can make you drowsy… I’ve not been feeling like drinking much to be honest but I do have the odd drink if out socially and it’s fine. I was out on Saturday night with friends who were drinking cocktails so I decided the best choice was an espresso Martini 🙂 no way if be drowsy on that.
Of course then with the Dex and espresso I was wide awake at 3am cleaning my kitchen 🙂
Onwards and upwards!
Helen
Sorry my ipad was being weird so I had to send without finishing and saying bye!
Good luck… I hope results start to pick up.
Helen
Hi sarah,
When I first had Dex in hospital I had some hallucinatory dreams etc, quite scary. I was wary of then having to take it again, but they did flag up to me that it may have been the particular combination of drugs and other issues I had at the time: I shouldn’t assume I would have the same effect again.
I had 40mg for 4 day blocks, for 4 weeks in a row at first and then just the first 4 days of each 21 day cycle: that was the protocol on the trial. I had insomnia, appetite, weight gain, and definitely mental effects (very busy head, very up on Dex days but down two days later). Nothing scary though, bit love-hate as I really liked the up days!
I’m now on VTD with 20mg of dex each day of velcade and day after: day 1,2,4,5,8,9,11,12. Kind of annoying as it dominates two weeks, I’d actually prefer the 4×40! I don’t notice the side effects are less, though maybe I’ve forgotten. The insomnia is annoying, especially, though sleeping pills help.
I agree with Eve, I’ve NEVER heard of two weeks continuous 40mg. Particularly a new patient first diagnosed!! Nightmare.
Dex is meant to be the most effective single anti-myeloma agent… I don’t know about prednisone. But then again, it’s often a combo that works so maybe it’s the V and C that aren’t doing it for him. Still, I see the value in trying Dex, introducing it carefully, etc.
Good luck John! I did the harvest in 2012 but not SCT – they’ve been on nice and I’m now expecting to do one later this year. So I’ll be interested to hear how you get on!
Thanks everyone who’s written on here, I feel like I’ve heard all the medical side effects before in great detail but hadn’t thought through practical/ emotiinal issues like frequency of visitors. I was in hospital for 4 weeks when first diagnosed though, so you’re reminding me what it’s like – very tiring seeing people for any length of time, sometimes nicer just to watch telly!! Also realising how it might be hard for people on the outside…
Also yes that thing of people coming to check on you at all hours of the night… Very reassuring in one way but total nightmare in another! Not much privacy…
Oh well, I’ve also been telling myself that I’ll forget it as soon as it’s over. 🙂
Helen
Hi,
I have that too! I currently have 20mg Dex on day of velcade and day after, so it’s Fri/ Sat, Mon/Tues for each of the first two weeks. Like you say, for me it’s two days after that the comedown happens: so for me Thursday is just totally a non-day. I feel utterly rubbish and can’t do anything at all. But at least now I know that so I plan for it, just stay at home, sign off work sick, etc. I can barely even watch TV. By the afternoon I might make it out to a cafe just next to my house, or for a walk in the park, but even that feels a bit difficult! I don’t really want to see people either but if family are around they sometimes drop by and help me out a bit – tidy up the kitchen which tends to be piling up with dishes from all the junk food I’ve been eating with Dex appetite 🙂
Helen
