Interesting reading al, your replies, thank you 🙂
The maintenance trials (offered to trials patients who have successfully gained some form of remission) are to see if by taking combinations of different drugs they keep the myeloma at bay for longer, or not as the case may be. I'm now on week 3 and suffered mainly with tummy problems, a pattern is forming and I'm blaming Vorinistat. Will be interesting to see how my 4wk blood test is next week, and see if it has affected the results. I'm still not sure if I can cope with the side effects, and having returned to work last week for the first time since July I'm dreading any toilet episodes LOL.
Still want to go away somewhere warm for new year, will be a very last minute booking as I need to see what my bloods are, will then probably stress about getting dvt for a week LOL.
FYI did get an individual holiday insurance quote from World First (recommended on this site), very thorough myeloma questioning, £76 for Lanzarote and £139 for Egypt, not too bad for peace of mind I thought.
Sarah Jane x
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
Doesn't sound like you are having much fun at the moment, one thing my consultant said was to try walking daily, walking is the best exercise for bones apparently (and perhaps for the mind). It took me a while to do any walking, even got an app on my phone to try and encourage me, even 15 minutes round the block. But now the weather is turning it's harder to get motivated – but I just try and remember what she said. Personally have avoided swimming pools as someone once said it was a bath of germs, and with a compromised immune system I didn't want to risk more illness.
Sarah Jane
xx
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
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
Glad to hear you are doing well on the maintenance trial. I am on the same meds with exception of aspirin. Found this interesting as I am paranoid about dvt, plus I was hoping to fly at new year, but all the literature said no aspirin with voronistat? If I can take it it would make me feel better especially with flying.
So far so good, but I've only taken day 4 pills. Have felt odd, but it's been a while since I took my cycles of pill, bit of dizziness or is this anxiety and odd tummy but had curry too! Will
Be intesting to see how the non-voronostat weeks are. Then I can get back to work, had end of nov in mind
But wanted to see how I faired on trial. I'm at clinic 6 Dec so will also be interested on bloods, had noticed last 2 months platelets were going down a bit, everything else in range though.
Fingers crossed you continue well
My hospital only has a couple of people on these meds so its nice to 'chat' to another
Sarah Jane
Hi Neil, did you decide to go for the maintenance? If so how has it been? My treatment has been almost the same as you did 5 cycles of RDC, then SCT in July. PP down to less than 1, decided to let the fruit machine make the choice for maintenance and today collected my REV and Vorinistat, very nervous about the latter, as on REV I didn't do too badly. My hospital hasn't got many on this combination so it's hard to gauge what it will be like,but as we know with all treatment everyone is different.
Best wishes Sarah Jane
Thanks Vicki
I was warned it could fail – didn't realise it could fail twice! I now everything crossed for June. I know my CD34 was 3 and they could only do transplant when it was 8-10, so I was way off. Shame they can't do a test before you have to go through priming chemo/injections.
The funniest thing was it wasn't my head hair that I noticed falling out first, lets just say that I wont be needing a Brazilian (not that I've ever had one). This story always makes people laugh 🙂
xx
Thanks Tom, will also save me lots of money on haircuts/shampoos etc 🙂
Although I am now spending money on scarves and hats – and suncream for my head – a new novelty
xx
rebeccaR
Harvesting for a rainy day sounds like a good idea, if I'd known I could of done that I would of. I was on Cyclophosphomide through my cycles – I was always told hair may stay/thin/fall out, but it stayed. I think the priming CYC is 4 times stronger which is why mine fell out over a few weeks, I also pulled/brushed it out, ironically I had a hair appointment to get it cropped the day it started to fall out – so cancelled that. It is now very fine – almost baby hair – with a few bald spots. A very kind friend cut it as short as she could – I was advised against shaving it as this can be quite sore. I wear scarves to work and go head-naked at home 🙂 Presume the bigger dose pre transplant will kill off all hair – again everyone is different – not sure of peoples experience on this?
xx
Thanks Ange, sorry things are progressing – but at least you are being closely monitored. xx
Thank you all for all your tips on blood results. Consultant was more than happy to give me past results and as her printer wasn't linked up I sat there and scribbled them down, still some blanks still to fill next time but a good start.
Start of Cycle 2. 3. 4.
Haem: 12.9 13.1. 12.7
WBC: 4.1 3.6 2.7
Plate: 215 124 164
PP (started on 38) 7 2 (start of cycle 4)
So all moving in the right direction, although wish the WBC was higher, but not neutropinic yet.
And this week I got my harvest date in march at Oxford. We discussed rough timescales for the next stage, SCT, as I had no idea how long things take, glad I did as this must of prompted appointment 🙂
Again thank you, I have found this forum invaluable and supportive and think everyone is very strong and positive x
Thanks Mavis. I always get pp a month later at next appointment, bit of a pain, tomorrow I finish Cycle 3, but get pp results for Cycle 2 at appointment.
Will see if consultant is happy to give me a printout 🙂
Chris, Brilliant, have it somewhere, or will download it,
Jean, no I don't have it but will call them tomorrow, always useful
Peter, I always see it on her computer screen, with numbers in red (guess these are the numbers misbehaving!), will see if she'll print it out for me 🙂
Thank you
Thank you so much for all your replies, all interesting to read. I know everyone is different but it helps to know how people cope with everything.
I am now on day 14 of my first cycle. I have never taken so many pills :0
Chemo tablets OK, taken with anti-sickness.
Revlimid – dizzy/foggy head, night sweats, awake at 4pm – not helped by all the fluid you have to drink.
And the infamous Dex – Day 1/2/3 OK ish, Day 4 bit spacy, withdrawal days – bit unbalanced.
Bonefos – making my mouth tingle
Plus anti-digestion, anti-viral, anti-biotic, aspirin
Cant wait for my week of no tablets! apart form the anti-life ones.
Very anxious and not sure if the tablets are making this worse, but I have been referred for councelling which I hope will help. Already suffered from dizziness prior to diagnosis – so I think this has just been made worse.
Work have been supportive and let me do some half days last week, they now also have my DEX diary so can work round me. I just feel like my confidence has been knocked and need to feel more calm and less jumpy – but in time I hope this will happen.
Sarah Jane
