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 James.
I was diagnosed at the beginning of October 2011 and Revilimid got my readings the lowest they had been till then though not spectacularly low. We measure paraproteins here but I think it’s the same as your immunoglobulina Gg reading. Mine was 11.7 I don’t get a reading for much else I just ask my specialist nurse if my are ok and if she’s happy so am I. The other one I like to keep a check on is my neutrophils but other than that I let the medics keep them under a careful eye and rely on them to let me know when things go awry.
We’ve just returned from a weekend in Athens. Which was brilliant and I can tell you I packed more drugs than the average pharmacy stocks and yes mobicol was included.
Every day is a gift.
Andy.
Hi Susie.
It’s Tuesday night time for my usual Dex fueled ramblings.
I thought about you today as I got cramp in my feet and legs. It wasn’t too bad and it was expected as I’d taken my last Pomalidomide tablet Monday and it’s a regular end of cycle occurrence as it was when I was on Revilimid. I also got cramp in my fingers, how that happens with no muscles there I’m not sure, though I guess it must be the muscles in my arms causing it. Anyway it made typing on my iPhone or iPad interesting to say the least.
I’ve had several doses of radiotherapy and that was at a different hospital fortunately the hospital is only six miles away so not much of an inconvenience as you have to put up with. Not sure about the pain going away will influence the need for the radiotherapy I’ve had it to blast away lesions and bone. Also it’s could be a bit like dental appointments toothache nearly always disappears as you get close to the appointment time lol. Anyway the MRI will tell all hopefully.
I went for a DEXA scan the other week to check the density of my bones and whilst I was there they measured my height and weight. I’m now officially five inches shorter than before diagnosis and a bit heavier! Guess I could get a pantomime job over Xmas as one of Snow Whites dwarf I think Grumpy would suit me lol.
That concludes this weeks ramblings it’s time I looked around and try to find a holiday or two to plan after all we have been back from or last trip over a week.
Every day is a gift.
Andy xx
Hiive Helen.
No need to apologise life does continue outside the myeloma bubble sometimes it’s good other times it’s not so good and the forum takes a backseat for a time. I’m sorry to hear about your dad. Never an easy time. Steph’s dad died last month so we have some idea of what you’ve been through. I got officially finished from work in June so I’m retired too.
We just got back from our latest trip away a week ago. Had a weekend in Athens after we were invited there by the family whose hotel we stay at in Kefalonia. It was a great weekend we really enjoyed it.
I’ve never come across anyone being treated with interferon for myeloma. Isn’t it an older drug that was a general cancer treatment in the past? As you know I’m on Pomalidomide now, just finishing my eleventh cycle, and it has crossed my mind a few times as to where I go when it fails. Bendomustine has been mentioned as a possibility but I will cross that bridge when I get to it as for now I’m doing ok. I’ve found Pomalidomide easier to tolerate than Revilimid but I’m not taking Cyclophosomide with it which is a big plus.
Hope your move goes smoothly and remember not to over do it! Let the strong ones do the work and you supervise.
Fingers crossed you get a great response from Pomalidomide. I’m sure the Prof. will take good care of you.
Every day is a gift.
Love Andy xx
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
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 James.
I’ve been thinking about when you need to be careful or more careful shall I say with what you eat. It’s when your neutrophils are low that’s is when the biggest danger occurs. I was neutrapenic for over 18 months so I was very careful about what I ate and I still are even though my neuts are reasonable. I try and keep risks to the minimum.
As to managing constipation a lot of it’s trial and error. Though I did find for me the anti sickness drug metroclopramide used to clear me out when I took it.
There’s lots that bung me up and one of the major causes in my case is pain killers which I now try and avoid if I can.
Every day is a gift.
Andy
Hi Susie.
We’ve just got home from a fab weekend in Athens. Laughs booze more laughing and yes more booze and now as it’s Tuesday DEX.
Your post reminded me about the cramps I used to get when I was on Revlimid. It was always at the end of the cycles I used to get cramps in my legs, sometimes my hands and my stomach. I know it’s annoying but I just put up with it as I didn’t want anything reduced drug wise. I think the cramps can be caused by low potassium because I was regularly given potassium supplements, which were awful, though I’m not 100% sure.
I promise you will get used to the chemo and things will get “easier” as things progress.
I’ve not had a SCT but it may become a possibility if things keep progressing for me though it’s not certain. So SCTs have been on my mind recently. Here some of my thoughts.
If they offered me to try to go for SCT I would go along with it and see if I could produce the required amount of stem cells. If the right number was harvested then I would have some serious thinking to do as to whether I wanted to transplant straight away or save the stem cells till later. My reasoning being I wouldn’t want to risk my quality of life when it’s ok and a transplant would be holiday limiting for maybe a year or so and I do like my holidays. With myeloma there’s no guarantees and with my track record I’m not sure I’d risk what I have at the moment on a SCT on the other hand if I got a lot worse and SCT was a possibility I’d probably go for it.
Your in a totally different situation to me as your just setting out on your myeloma journey and the big advantage a SCT could give you is drug free time. I know it’s not a walk in the park having a SCT but it COULD give you years of little or no drugs of course you could also quite quickly relapse but you will have drugs to fall back on to. I’m not trying to influence you one way or another that I will do once the SCT question arrives lol and more is known about your individual situation and if you can still put up with my Dex induced rambling.
Anyway I think I’m going on a bit again but I will say I last thing – keep posting your worries and side effects and there’ll always be someone to offer advice or support and if it’s too personal for the board you can message direct to a board member of your choice.
Right I’m going to look around and see if I can find any trips to organise because the holiday portfolio is empty at the moment.
Every day is a gift.
Andy xx
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 everyone.
Sorry I’m a bit late to this thread. Constipation is a pain in the a*** and a constant companion of myeloma treatment unfortunately. I try to preempt my bunged up days by starting my laxatives before I take the drug that cause the problems though I take Docusate daily anyway.
James I’m not sure you should be trying probiotics as I’m sure they’re on the things to avoid list a bit late telling you that now! Live foods are a no no I was told to have a diet similar to a pregnant woman. Infections including food poisoning to be avoided at all costs. Myeloma and it’s treatment hammers the immune system and leaves us sometimes defenceless that’s why any temperature over 37.4 needs to be reported to the haematology ward ASAP 24/7
Every day is a gift.
Andy x
Hi all.
As something of an “expert” of the side effects of Cyclophosamide, after over 2 years on it, all the above can be laid at it’s door. Taste – forget about it nearly everything tastes metallic! Good for weight loss though. Even beer takes some drinking. My sense of smell went. Nausea – mildly for 3 days post Cyclophosamide. Concentration effected too. Even my eye sight suffered. I used to start my cycles on Sunday so I could enjoy the weekends with my wife and I could suffer by myself whilst she was at work.
Don’t take one PPs result in isolation it’s the trend that matters. Hopefully the next test will show the downward trend again.
Hi Mavis.
I thought we all got a specialist nurse! Guess I was wrong there. We have a Macmillan nurse who deals with all the Myeloma patients. Actually on our second since I was diagnosed. When I was first diagnosed she was brilliant and talked us through everything including the financial side of things and even made a home visit. She has her own phone number so we could get straight through to her.
Every day is a gift.
Andy x
Evening Susie.
Yeah I had the infusion over 15 mins. For me the flu type side effects of Zometa were quite mild and it took me a little while to put the two together. Probably due to other side effects bothering me more.
I wouldn’t change anything until you’ve been through a few cycles and then I would only change things if something was really causing a major quality of life problems. If the doctors prescribe it I take it because I believe, hope, they know best and I guess I’m bloodyminded.
Like I’ve said before it gets easier the more cycles you do though hopefully you’ll only need 6-8 before your ready for a SCT.
Right back to ONJ (osteonacrosis of the jaw) my problem is still ongoing it’s not being treated and the dental consultant isn’t too keen on intervention as it’s not proven to be very effective. He reckons the dead bone will eventually break of after new bone has grown beneath it. That’s the good news the bad news it could take a few years! Doesn’t he know I may not have a few years lol.
It’s not daft to look or worry at the worst side of things but I decided I wasn’t going to think about what ifs. Since my Myeloma has proven reluctant to play fair and refuses to be beaten by most of the drugs available I take each day at a time and try to tackle problems as they occur. My wife on the other hand unfortunately is a worrier but we both agree we’ve got to enjoy what we have so we have regular holidays go out as often as possible whilst we can because we don’t know when things will take a turn for the worse. Hopefully my money will run out before I do LOL.
Okay I’m starting to ramble on now #theDEXeffect every Tuesday nights the same
Hi Susie.
The nauseas I had wasn’t too bad I was never sick or anywhere close to it. I used to start taking my metroclopramide the night before my Cyclophosamide. The runs were sometimes a problem for me also and I was switched to Ondansetron which helped. As you are just beginning your treatment I would expect some problems whilst your body get used to being “poisoned ” but it does get easier.
The symptoms I had for osteonacrosis of the jaw started with what I thought was a small ulcer that wouldn’t heal.
Although it’s well know problem with Zometa it’s a rare problem. Good oral hygiene is necessary with regular dental check ups BUT NO extractions or major dental work should be undertaken without at least a 3 month break from Zometa first.
Try not to worry about what may go wrong and concentrate on getting through your current treatment you’ll have enough to deal with without worrying about what ifs.
Every day is a gift.
Andy xx
Hi Majic.
As Maureen says I’ve been through most treatments with not much success. I only had one dose of DTPace with 4 nights in hospital. I only had one cycle as it was deemed not to have worked which was the same as every other treatment I’d tried up till then. Even trying for an Allo SCT wasn’t possible due to no match being found.
The experts got their heads together and it was decided to try me on Revilimid (Lenalidomide), not widely used at the time, nothing seemed to be working for the first 3 or 4 cycles so they added Cyclophosamide to the Rev. and Dex. RCD which managed to get my PPs down to just under 12 and kept me stable for 2 years. I’m now on pomalidomide hoping to get a good while before it fails.
Good luck with whatever you decide.
Every day is a gift
Andy xx
Hi Susie.
I was on RCD for 22 cycles the main problem I had was three days of nausea post Cyclophosomide day. The nausea wasn’t too bad or maybe I just got used to it. I too got cramps mainly at the end of each cycle I didn’t take anything for them I just used to stretch them out as I still have to do now with Pomalidomide.
As for Zometa I sometimes got flu like symptoms which weren’t too bad however I also got osteonacrosis of the jaw, which is a well known side effect of Zometa so I’ve had to have it stopped.
Hopefully once everything settles down you will get to SCT without any major problems.
Every day is a gift.
Andy xx
