Hi Claire / Katy,
I actually cannot believe its been over a year since I was last on this forum and 18 months into treatment, and I still can’t believe that we are still in the thick of his treatment with technically another 10 Cycles to go before we sit and wait for the bugger to come back. My other half is still on the trial and today starts his cycle 9 out of 18 so half way there. He never received his SCT as he was randomized into the consolidation group which was another 4 cycles of twice weekly Carvisimob. But for the maintenance we are now down to once a week – but everything as you rightly know takes its toll, he’s lucky that he still has a job that looks after him pays him his full wage, he doesn’t work on Wed or Thu as hes having treatment and then too sick to get out of bed on the Thu, and on Fri he works from home as much as he can, but on his week off he can no longer manage a full week at work and finds himself taking Fridays as holiday days (he still has plenty left over from last year). His symptoms are changing, the nausea is still bad but its controllable and there is a lot less if any of the actual sickness. He does still get a lot of chest pains, now has god awful headaches and is always tired. But the worst thing of all is the 3 monthly Zometa he has to have this on his week off so in effect some times hes in constant treatment for several weeks at a time, each time he has this drug we always (4 out of 5 times now) spend a night in A&E with fever, sickness, pain the lot – I feel so bad as I just grab the keys to the car, grab his file, drag him to the car and grab my sudoku book cause I know exactly whats gonna happen all very calm about it now, but always thinking this kind of crap shouldn’t be happening now not at this stage, I get very angry with the dr’s but as he is on his maintenance now he and his counts are all not traceable he doesn’t want me speaking to the dr as he know’s i’m prone to voicing my opinions 😀
Katy, you are a strong woman I don’t know how you manage with a child let alone still working, I find just getting through my working day and then having to go home and look after my other half (gotta love the constant mood swings from the steroids) is more than enough for one person.
But have you heard about the CAR-T cell transplant treatment – I am so hoping that by the time the MM returns my other half can go straight to this treatment and then we can put it to bed once and for all. I just hope they make progress in getting the cost down and opening it up properly for MM patience. It’s been such a relief finding out about this treatment and knowing that its closer than I thought it would have been and suddenly there is a future again, a lot of pain still but there is a future at the end of the tunnel.
All the best to you both and thank you for sharing it’s good to know that we are not alone xx
Hi,
Just an FYI – My other half started getting really bad headaches for 48 hours at a time for the two days following his treatment (Carfizomib) but we knew this was down to the steroids (<span style=”color: #000000; font-family: arial, sans, sans-serif; font-size: 13px; white-space: pre-wrap;”>Dexamethasone) </span>as it makes him sick even on his weeks off so we reduced the Dex from 10 to 5 tablets for a cycle (while he was on consolidation) and then the headaches started. If you’ve had a reduction on the Dex it maybe a possible cause but again everyone is different.
Its a catch 22 the Dex can make you sick but then if you reduce that the Carfib can cause you to have headaches so for us it was one or the other (he chose the nausea over the headaches as they were really bad)
Just out of interest does this also affect your sense of taste ?
Hi,
My fiance is was diagnosed Mar this year he is going to be 40 this week, I agree 100% with Graham and what he said. Go with your mum whenever you can, make lists of questions as and when they come up, even though my other half looks things up on MM, when at the appointments he doesn’t necessarily register what is going on and albeit some times gets annoyed when he thinks I ask random questions to the Dr, but in turn it helps in the long run and a lot of the time I can explain things at a later stage or confirm next steps when he’s not sure. For my own sanity I do a diary of the days he is having treatment, and I have a daily chart where I keep all his stats – temperature / BP (he is on a trial so its more of peace of mind for me). I also sort out all his medication daily so he just needs to take them at the right time, which at times is a pain when he’s had enough of taking tablets so I find myself occasionally being the bad guy having to constantly nag him when hes not on track. And again agreeing with Graham – its a long slog before you can get into a routine just don’t forget about yourself.
Sab’s
Hi Emma,
As you can see you are not alone. My other half was diagnosed in March this year and he is 39, but we knew something was very wrong with him before his 39th birthday when he was the same age as you, unfortunately he was ignored for several months by his GP, you are both in an elite club of being under 40. (he has his 40th bday this month and we are lucky that its his week off from chemo treatment if not he’d be hooked up). I was a little surprised to see you were not offered any kind of trial based on your age, right now my other half has been randomized and instead of having SCT he is now on another 4 cycles or Carfilzomib.
Anyways after several months I have started to feel more upbeat about the future and see a future, while we were attending Stanmore the RNOH for his collapsed vertebrae the Dr there was very upbeat about the way in which trials and medication were coming along for MM, he also likened the disease to HIV which was exactly how I have been viewing the disease and hoping the progress would match. While there may not be a cure (or else we could eradicate cancer for good) the disease is becoming more manageable and as with HIV 20 years ago it was a death sentence now the national average age for those with HIV is in line with the UK’s national average age. The progression that MM treatment has made in the last 10 years has come a long in leaps and bounds and there are many many treatments to be had so if one doesn’t work another one will. I like to think that in a handful of years from now a new suppressible long term drug will come out and people now days can live long happy healthy lives with a disease. But that is my thoughts and wish for now, you are young and apart from the obvious I gather healthy you will get through the worst of this and be back on your feet ready to manage whatever the MM has to throw at you. Last week a work colleague had to fly home her mother was diagnosed with a brain cancer – and unlike the MM she has been given less than a year if she is lucky and only at the age of 52, remember there are some cancers that wont give you a fighting chance.
I hope all goes well with your SCT I guess it wont be for another few years until my other half has one (trial wont finish for another 22 months) but his harvest of cells is on ice now.
Hi Bob,
Similar kind of issue with my other half, collapsed vertebrae – took a few weeks to be seen at the RNOH was put in a body cast brace for 3 months (as there was some bone growth which was just about pinning the vertebrae up) , after 3 months told that one third of the bone had healed but he would have a back as strong as that of a very elderly woman and it was left at that. The UCLH said that no surgery was done as there was a risk of the plastic cement going into his spinal canal – this was not mentioned at the RNOH they just said there is nothing more we can do. Still in constant pain and got very bad when harvesting the stem cells that he had to have an MRI to see if any damage was done. Someone from the RNOH is at the UCLH once every 2 weeks to assess patience scans, my other half’s scan was looked at and we have another appointment now next Monday 4 months after being told that there was nothing more that could be done. We don’t even know why the RNOH want to see him again.
Its not much help but for most people suffering from MM nothing is ever simple and its a lot of up’s and down’s just know that people do jump very quickly if they think something serious is about to happen , but until then its always a case of take your ticket and wait your turn. But there is a lot of support out there and people are very friendly here and happy help answer your questions.
Thank you Maggie, I guess I’m going to be feeling like this for quite some time, the next phase is another 4 months and then 18 months of maintenance after, so we are in it for the long haul, I just can’t wait for the day that hes not on treatment and in remission, but I suppose that nagging voice of when will it come back will then remain in my head.
It is good to hear in a way that your husband was diagnosed back in 2011 and is still in remission and keeping up with his lifestyle. It does go to show the progress made in the past 10 years, I just hope that they find a drug that will permanently keep this disease at bay and stop it from coming back.
The one thing I do take heart from is that most people in here have been diagnosed for quite some time and are all still doing well and living a full healthy life, it’s very reassuring.
Thank you
We try to keep everything as normal as possible – he was advised not to ride his motorbike – not because he cant but because if he comes off it then he can cause damage to his already fragile back – but the way we see it is if he comes off his bike hes buggered any ways! So while the weather is okay hes back on his bike before treatment starts again. Unfortunately keeping things normal just involves the mundane day to day stuff – all the joyful things seem to have been put on hold or stopped due to him not being physically able to do what he would normally do. Its a strange situation to find yourself in and an over night change which several months on still doesn’t seem real.
Jeez – over a year since you were diagnosed to getting the SCT, that is a long time. The one thing I wonder for myself and my other is will there ever be a day where you wake up and go to be with out it being the first and last thing on your mind of a day. Its both a blessing and a curse that everyone is different you can’t ever get a straight answer.
Hi Adrian,
I think we are okay, though we will find out on Wed at our next appointment, i’m guessing its a case of having the co-ordinator not knowing what she is on about and getting lost in translation. I got home Friday and noticed in one of the old letters sitting on the side said that the T-12 bone had the big lesion – this was the bone she mentioned and is the one that he was put in a back brace for. So i’m guessing its not a new one and someone is actually doing something after I mentioned on our last visit that no one has paid any notice to his back since the end of June.
fingers crossed that its nothing serious and here’s to the next four months of chemo twice a week again.
Literally just heard he is going on another 4 cycles and not having the SCT – But he is now going back to Stanmore ASAP as during the SC priming session he had sever back pain they had to do a MRI as it was located in the one area, they have noticed another lesion on his T-12 (i hope this is not new – can you still get lesions if the treatment is working – dropping your PP’s and all down ?? Im more confused than ever now. He said he doesn’t feel any different as the pain is just always constant – and the priming session they said something about a level being 100 and no wonder he was in so much pain as they only needed a count of 10. And of course we are not due back in now till the 18th – great!
Thanks Adrian,
So usually is it the day after you have the Chemo that they put the stem cells back in ? I know you said it was the weekend but im not sure what is the norm. We were told that it takes 11 days for the immune system to go back to normal but im not sure what happens in the first week. My other half is 39 he will have his 40th the week after he gets out (if he has the SCT). But thank you for some insight, im slowly piecing things together.
Sabs
Hi,
Any feedback on the process would be greatly appreciated – we find out between now and Wed (18th) if my other half is having his SCT or not but he is provisionally all booked in for the 23rd Oct. I don’t know what would be better the SCT or another 4 months of chemo twice a week (randomized on a trial).
I’m a little put out by the 10-15% chance of him ending up in the ICU / followed the 2% fatality rate along with him losing 10% of his body weight (my other half is naturally very very slim to begin with). Though i’m mostly worried about the first few days after the initial chemo session whereby he suffers a lot with sickness its very bad.
Adrian – May I ask how old you are again, how long were you in for, was it Chemo just the one day before the transplant – i’m still confused about the steps involved.
Best
Sabs
Hi,
No fixed date yet as we don’t know if he is even going to be having his Stem Cell Transplant. He will be randomised hopefully in 2 weeks time and then whichever course he goes the SCT or another 4 cycles of chemo (either way his stem cells will be put in the freezer for safe keeping). but if he does have the stc it will probably be 6 weeks from now.
Hi Claire,
That is really good news to hear (pp at 2) slightly envious now as we only got to 3 :/
My other half had his Stem Cell Harvest yesterday the past 10 days I wont lie haven’t been that great, the initial chemo made him very sick, I was on the verge of taking him to A&E when his temperature rose to 37.4 (0.1 and he would have been in) luckily it went down and he stopped being sick but for 4 days he felt retched. In addition on day 7 of the injections he got sever back pain so much so they had to do an MRI as it was localised (which isn’t normal) and we thought it may have something to do with his initial back injury caused by the myeloma. But of course we were expecting the bone ache pain but not to the degree that he got – luckily it was the day before the transplant so they gave him pain killers and he managed to get through the day.
Yesterdays transplant went surprisingly well – they said they needed some blood count of 10 in order to start the harvest – then a nurse came back jokingly saying no wonder he was in such pain his count was 100. We were then told that they needed to harvest 2 million cells in order to get a SCT and anything extra was a bonus (for a second SCT as and when that comes) but in the end they got a count of 6 million.
He’s home today still feeling a little groggy but he is a lot better and the back pain from the over production of the stem cells has gone (instant relief once those excess blighters our out of his system). We are hoping that tomorrow he can go to work even if it is only for the day, it makes him feel better just getting back to normality.
