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claicarter 6 years ago.
Thought I’d share some good news – hubby’s PP is now down to 2 after 3 rounds of VDT and he’s been cleared for his SCT after round 4, which he started yesterday. We’ve had the SCT process thoroughly explained and whilst some of it does sound daunting we are more determined than ever to get through this and out the other side. We are aiming to get him back to full strength for our son’s wedding next June. He’s a very determined man (having worked full time all through VDT) so we are staying positive but realistic. Sabs – I hope the SCT harvest went well. Claire x
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.
Wow 6 million is amazing! Does he have a date yet for his high dose chemo? Just wondering how soon after the harvesting out is done. Wishing you both all the best for the next bit. Claire x
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.
Sorry for the long gap between updates but its been a busy few months. Anthony had his SCT 6 weeks ago tomorrow. It was incredibly hard going for about 2 weeks, Ant was very poorly from the day after the high dose chemo. He slept constantly for the first week, then the S&D kicked in! He lost a stone in weight in 3 weeks. He was discharged on day 14 which in my opinion was a week too soon as he was very sick the first week home. He went back to work on our family dairy farm in week 4 (mornings only for the first week. It’s now week 6 and he’s back at work full time 7am to 7pm – although he’s tired in the evenings. He’s still losing his hair by the day. We are planning a holiday and looking forward to a cancer free year. Good luck to all those who have yet to have their SCT – please remember when you’re in the thick of it…… it will all be worth it! X
Hi Sabs – I am 43 and on cycle 4. If it’s any consolation, I have been completely wiped out from the cumulative effect of the chemo for VTD. I find it incredibly frustrating as I have an 8 and 5 year old as well as a senior legal job and am now faced with doing less than a third of what I could cope with before. I haven’t had nausea but horrendous constipation for days. Before this the only time i’d Set foot in a hospital was to have my children! It is really frustrating – I feel like a failure that I am so constantly exhausted, and my 5 year old just keeps asking why Mummy is a massive lazy bones!11. I think you just can’t tell how it hits you but I like your husband am responding well to my light chain reduction which started at 4,000 – 6,0000 and is now down to 8. Maybe that explains the utter wipe out. I am now heading towards my stem cell. Good luck with your journey. Hopefully we’ll get through and have some good years of remission!
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
Dear SABS / Katy,
I can’t believe I’ve not posted for almost a year now it either what a year it has been! Anthony is now in partial-remission, we are now playing the waiting game. He has only just been cleared to go on holiday so we are off to Dubai in just over a week. We used to ski once a year but that is now impossible due to his fused spine. We are hoping we will take to hotter climates and begin a new regime of holidays. We take each day as it comes and live for the moment, we are both happy and healthy, may long it last. Good luck to all those still in the thick of it, our thoughts are with you always. KR, Claire x
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