This topic contains 27 replies, has 15 voices, and was last updated by 
andyg 9 years, 11 months ago.
Great news Andy, it’s really great when the dreaded p/ps start getting into single figures, I’m sharing the pleasure of the same thing happening, I’m down to 4.2, can’t believe it. I’m waiting for a vertobroplasty, following which I hope to be able to walk more than a couple of hundred yards, and can’t wait to get away somewhere – ANY where !
Andy, Myeloma is such a trial, and I’ve always been impressed and encouraged by your positive attitude and cheerfulness in your posts. As you say, each day is a gift, and I try to deal with each one as they come. Keep it up, best wishes, Jeff
Hi Jeff.
Just returned from a weekend in Athens. Went there as we were invited to a wedding and did a bit of site seeing too. That was a bit painful for my back but the pain was treated with copious amounts of alcohol. Anyway what I meant to say is I had kyphoplasty over a year ago T11 & T12 were operated on. It definitely helped me though I’m still limited to how much walking I can do.
I was at the hospital for a DEXA scan today and they weighed me and measured my height I’m now over 5 inches shorter than I was. I’ll soon have trouble getting served in pubs, not because I look young though I do lol, because I wont be able to see over the bar! I’ll also be able to my own socks on again without bending over lol.
Every day is a gift.
Andy.
Hi, Andy, Glad the holiday went well. Interestingly, T11 and T12 are due for treatment on Monday, I’m trying not to expect too much, but any improvement on my present limitation on walking will be welcome. I’ve heard varying times that the benefit from vertobroplasty lasts, any idea ? I’ve lost 4 1/2 inches in height which I think I’ve mentioned before – do you find this difficult to adjust to, I do. I’m relying on painkillers rather than alchohol, as I’m not sure how my ileostomy would react to too much of it, and I have enough trouble with the damn thing as it is. Not sure about getting away for a while after the op as one of my daughters is in a bad way following a brain bleed. Just have to wait and see. Positives are very little serious side effects from all the chemo drugs ( not counting Dex !! ) and a falling p/p, consultant said I was heading for a good remission, Revlimid certainly seems to be working for me , on cycle 7 now.
As you say, and I’m a great believer in it, take each day as it comes, and try to make the best of it. I’m off to refit the fuel pump on my 1932 Hillman Minx !
Best Wishes to all our readers, Jeff
Hi Jeff.
I’m not sure how long the benefits last. Though I know one of mine that was operated on has collapsed a bit more but I’m not sure if that’s a fault of the operation or down to the damage caused initially by the myeloma. I’m Still benefiting from the op as the wife says I’m more upright and the pain in my lower back is less. I still have to be careful with what I do no lifting anything remotely heavy and very rarely do my hands go above my head. I’ve had a while to adjust to life like this as it took them 18 months to diagnose me so I was already adjusting to life with what I thought at the time was a dodgy back! I see my spinal surgeon next month to see if there’s anything else to be done. When I last saw him he was worried about a collapsed vertebrae lower down and the risk of spinal cord compression. I try and steer clear of painkillers as much as possible as they bung me up and the really strong ones make me spaced out!
Right it’s time I rested up a bit – Thursday is my weekly Dex crash day.
Every day is a gift.
Andy.
Hi Andy
Vicki here, not posted for ages but often thought of you all. I’ve posted our updated to Maureen’s offtopic. It’s been interesting. So pleased to hear you are doing well and your pp’s are down so low. That’s absolutely great, brilliant news! That’s great for you guys. Is there any chance of a SCT?
So pleased for you and steph. Best wishes
Vicki and Colin who is now in bed as it’s the start of velcade treatment and he’s knackered!
Vicki
Hallo Andy, thanks for the interesting reply. I’m a bit worried about Monday as the very stiff painful neck has returned, I hope it doesn’t prevent the operation. At least so far the horrible headaches haven’t returned. One side effect I do suffer from occasionally is really heavy sweats, I’m sitting with my head swaddled in towels soaking it up. More uncomfortable than anything, I have never been able to work out what causes them, they stop as suddenly as they start. Regarding the height loss, I say I’m looking at people I used to look down on !! Being previously very active I find it quite difficult not to overdo the lifting and carrying tasks, I am obviously going to have to slow down and think what I am doing more. Reading through this post regarding exercise, I have found making myself get up and do something like a bit of light gardening does improve how I feel. ( sweating stopped, towels off !!) Strangely, this doesn’t bother my back at all.
Well, I am beginning to ramble on, so I’ll end now. Fingers crossed for Monday, Thanks again Andy. Jeff
Hi Jeff.
I too suffer from a sore neck from time to time and this I again put down to over doing it a bit and the damage to my spine. I also find I get muscle soreness easily now from doing things I’m not used to now and upsetting my resting muscles – poor things.
Regarding the sweats I get them sometimes but that’s due to the steroids and usually effect me in bed.
I hope everything goes well on Monday remember the full benefits won’t be apparent immediately – good luck.
Hi Vicki.
I wondered what had happened to you and Colin. Sad to read he has had to start treatment again.
There has been talk about a SCT though it’s only been said as a possibility because they’re not sure if I could produce enough stem cells and they’d have to be sure the drug they used to “clean my bones out ” would do the trick. As you know I’ve not got a good record of the drugs working on me. Anyway nothing has been decided yet and they don’t seem to be in a hurry so I think it maybe a remote chance. And anyway it would stop the holidays for a while lol.
I hope Velcade does the trick for Colin. Are you aiming for another SCT.
Every day is a gift.
Andy xx
Hallo Andy, the op didn’t happen ! Got there, got changed, when we discussed what drugs I was on, it was discovered that I should have been told to stop taking a blood anti clotting drug, Clopidogril at least 8 days prior to the op., and it wouldn’t be wise to go ahead with the operation. bit annoying as I had contacted them to query this drug, but no call back, and I must admit other family concerns distracted me from following it up. never mind, they are fitting me in on the 17th. these things happen. I’m sitting swaddled in a towel to keep warm sweating like the proverbial pig. Why this occurs some days and not others I don’t know, very odd. Well, got to do some pheasant plucking for dinner tonight once the sweating stops.
Hope you find somewhere nice for another holiday, Jeff
Hi Andy
Apparently the prelixafor that boosts the bone barrow cells production is available here in gloucestershire as a matter of course so perhaps that will help you? I do hope so if that’s what you want.
After the first SCT Colin said he wouldn’t want it again, however one consultant said it was an option and the other didn’t. Current thinking is that if we are offered it he will go for it….we shall see if this treatment works. All veing well. On week 2 of valcade,dex and cyclophos. We are hoping to have friends over for lunch on Sunday fingers crossed. Keep well and enjoy your weekend!
Vicki and Colin x
Hi Jeff.
I was on anticoagulants, I still am, before my kyphoplasty and my consultant and surgeon had differing views on it. In the end I think my consultant “won” because I was only off my tinzaparin for 24 hours pre-op. Though they did check my blood for clotting before going ahead.
Hi Vicki and Colin.
I think it’s just a remote possibility about the SCT. I’ll just have to wait and see I’m not sure of the benefits I would gain, if any, since I’m at the end of the drug trail. We haven’t had the serious talk about it yet because my consultant is still consulting a higher authority. So it’ll be into next year before that conversation takes place unless something changes suddenly. I hope Velcade does the trick for Colin and if he goes for a second SCT the stem cells don’t play hard to get. Hope you are keeping well Vicki and pass my regards on to Colin.
Every day is a gift.
love Andy xx
Hi Andy
Hope all going well with you. We are nearly at the end of cycle 1. The dex is back with a vengeance. Colin seems to have really suffered this time with sleeplessness and hyperactivity. They’ve decided to phase him off he steroids rather than having two days on and then bump. Ref the SCT the one consultant said he could bein with a chance and the other said not…..so we are not rally sure. From the one that says yes she did say that if we chose not to go down the SCT route then there wouldn’t be another chance. So it’s a dilemma. Let’s just hope this regime works as wll as the first time round.
This time the side effects don’t seem quite as bad or is it that we are getting used to the routine….is that possible? Hope you are doing ok Andy and trust that you are managing to enjoy yourself in and around the drugs.
All the best and stay well
Vicki and a snoring on the sofa Colin 🙂
Great news long may it continue!! Where are you being treated
Dawn xx
daisychain.
Hi Vicki & Colin.
it seems a lot of people are having second SCT’s or getting ready for a second SCT at the moment. I know what you mean about it being a dilemma now with talk of a possible SCT for me I’m not even sure I would go for it. My reason being that it takes so long to get over a SCT that I wouldn’t want to spoil the quality of life I have at the moment. Anyway it’s all hypothetical for me at the moment.
I’ve just started my 12 th cycle of Pomalidomide. I’m getting in the routine of pill popping after all I’ve been doing it for over three years! The main trouble I have at the moment is my once a week every week dose of Dexamethasone. But otherwise I’m fine and enjoying myself. How many cycles is Colin down to have.
Hi Dawn.
I’m being treated at North Tees Hospital in Stockton on Teesside.
Every day is a gift.
Andy xxx
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