[jeff605Participant]

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

[jeff605Participant]

Denise, Hi, I started on CDT, on trial X1, which did much the same as your husband, drastic reduction for a start, then plateaued. I then came off the trial, went onto Velcade which had a slight decrease in p/ps. I then if memory serves me, stopped every thing for a month. and was then put on Revlimid and Dex. This had a great result , on course no.6, and p/ps down to 4.2 the lowest yet. And that’s with some other quite serious set backs non Myeloma related. So don’t worry too much – easier said than done, I know – there’s plenty to go at yet. best wishes, Jeff

[jeff605Participant]

Les, hallo, reading your message, when I was on Velcade and Dex I found it had very similar effects to those you described, particularly the tired part. As you said after any effort extra to ordinary tasks would leave me shattered and sitting down dozing off. Since stopping Velcade and Dex I am now on Revlimid and Dex, and feel ( although I have had other problems which have upset things a bit ) much more with it, and am doing a bit of light gardening and playing in the garage. So hopefully your partner’s tiredness etc., will ease in time.
Long may his remission last, regards Jeff

[jeff605Participant]

Hallo Leza, I started this thread following meeting several ex work mates at the Myeloma clinic, all from the maintenance dept. where we worked over the same span of time. Considering the stated rarity of Myeloma occurring, this seemed to me – and remember this is due to chance encounters, nothing formal – more than a statistical blip which is why I commented on it. As you questioned, will anyone ever investigate and refine the research needed ?
Hope all goes well with Phil’s return home, Jeff

[jeff605Participant]

Well, talked to the G.P. tonight, as he put it the good news is it’s nothing to do with Myeloma. What appears to be is arthritis, which is present in most of my spine. What this means for the future in terms of mobility and pain, I don’t know. Very worried about it as both these factors are so important to quality of life. Ah well, just get on with it I suppose.
Best wishes to all
Jeff

[jeff605Participant]

Hi, Annette, thanks for the information, very useful and I shall restart trying harder to drink at least 2 litres of water – though I do like the isotonic sports drinks too ! Jeff

[jeff605Participant]

Hallo bit off subject, but regarding ” drinking whatever quantity of water – this seems to vary depending who’s telling you – Although like David I struggle to meet the target with water, does it have to be water, or does any liquid ie tea, coffee, juices, even beer, count ? Just wondering, if I count everything most likely make it most days. Jeff

• This reply was modified 10 years, 1 month ago by  jeff605.

[jeff605Participant]

Hi, I am an oldie ( 76 ) so read this purely out of interest, and hope I am not speaking out of turn. Richard, your contribution I found cleared up a lot of terms etc. I’ve really never understood or grasped, and has opened my eyes to just what decisions and risks young SCT patients must go through. In a way, when at my age anything can come along and knock me of my perch, it is easy to adopt a philosophical attitude, do what I am told, fight back against the Myeloma as best I can, and get on with what is left of my life. I can’t imagine going through this and more with a family and young children. Believe me when I say – and I think I speak for most oldies – our thoughts and best wishes are always with you in your battle against this horrible disease. Jeff

[jeff605Participant]

Hi, just got round to catching up on the forum, been off it due to several factors, the worst being my middle daughter suffering a bleed in her brain, and being whipped into the Queen’s Medical Centre in Nottingham, where she is slowly improving. Meanwhile, I’ve had a problem with my Stoma, which laid me up for some 10 days feeling awful. The very next day after this cleared up,( and the reason for this post ) I woke up feeling as though I had been hit across the back of the neck with an iron bar, resulting in stiff sore neck and the most horrible heavy head aches that feel as though they are coming from inside the top of my head. I am waiting the result of xrays, had to cancel MRI scan arranged for today due to the level of pain. Does this sound familiar to anyone? The heamo consultant didn’t assume anything, and is arranging various tests. I already have T11 T12 collapse and am waiting for a vertobroplasty op, missed the scheduled one due to being in hospital with a abcessed appendix, perforated bowel and peritonitus Busy time one way or another. Any advice gratefully received. Oh, and aren’t the nights long ! At least my Myeloma reading are staying stable after a small rise through all this.
Regards to all struggling through this disease Jeff

• This reply was modified 10 years, 1 month ago by  jeff605.

[jeff605Participant]

hi Liza and Alant, First, I’d like to wish you both the very best in your struggle with Myeloma. It certainly is a life changing development !!! That’s very interesting, my consultant more or less turned a deaf ear when I mentioned the number of ex – workmates from the maintenance department I had met at the clinic with Myeloma. I suppose firemen must be exposed to many chemicals and substances, and often hot of course. I wonder if this un-representive number of firemen is true across the country, and are there “blips” in other occupations. Surely it must be important to establish what triggers Myheloma off.
All the best to all of you out there, Jeff

[jeff605Participant]

Hallo Jan thanks for the interesting reply. Very similar withdrawal effects to those I had. It’s quite worrying to think that there may be no alternative other than to have to endure these side effects, even more so as there is no telling how long they may last. I wandered onto an American druggies internet site, they use Gabapentin to enhance highs, and they were talking about months on “cold turkey” withdrawal !! As said before I am seeing my GP soon to discuss this, and will also talk to the consultant next appointment. One thing for sure, I don’t intend to stop on painkillers forever, so will have to find out exactly what the withdrawal situation is – if anyone knows. But until I do find out more, I don’t intend to stop taking the full dose again.
Thanks again, I will report back anything I do find out, Best Wishes, Jeff

[jeff605Participant]

Hallo Jean, I had a mild attack of shingles some years ago centred on an area of my chest. The residual pain from this did last a long while after the shingles had run it’s course. Frank certainly has my sympathy, although I can’t really imagine what he must be going through. It’s a difficult decision equating pain relief against ” normal ” living and putting up with pain and discomfort. I have had to decide against increasing my morphine to alleviate my pain from two collapsed vertebra, and having to stop driving due to suddenly having very short blank spells, against putting up with a bit of pain and not being able to walk very far, but being able to drive. Really, it’s a decision that only the person involved can make. I can quite understand why Frank wants to stop taking any drugs he can.
All the best wishes to you both, Jeff

[jeff605Participant]

Hi, Jean. Thanks for the interest. Certainly sounds much the same. Fortunately, the effect of taking the first tablet was so rapid it was unbelievable ! Within minutes I was much improved all round, the sweating stopped almost instantly, and the other effects within half an hour. I am now back on the full 300mg x 3 times a day, and feel what’s normal for me, except my back is a bit sorer than it was, but that’s another story ! So, I’ve booked an appointment with my GP ( who fortunately is a good one, he spotted my Myeloma early on ) to find out what I need to do to come off the Gabapentin safely, and to minimise the side effects.
Best wishes to you both, Jeff

[jeff605Participant]

Hallo Eve, I’ve just picked up your sad news,I’m so sorry to hear of Slim’s passing. All I can say,from my own experience, is the well worn phase ” time is a healer” is true to an extent. Eve, one day the birds will sing again. Jeff

[jeff605Participant]

Hi Robert, sorry to hear your news, it certainly takes some coming to terms with, doesn’t it? Robert, I was diagnosed with smouldering myeloma some 4 – 5 years ago, which lasted for 3 1/2 years. Up until my wife died 2 1/2 years ago I was taking curcumin every day, how effective it was is difficult to say. My wife’s death affected me quite badly and I sort of gave up for a while, and stopped taking curcumin among other things, and the myeloma became active and I started chemotherapy about 18 months ago. What difference the curcumin made I really can’t say, I know some people swear by it. I’d say give it a go, it won’t do you any harm, and who knows, may well do you some good.
Robert, make sure you enjoy your period of ” smouldering ” as much as you can before the myeloma bites, in my case it’s attacked my spine and I am quite limited in my activities at present ( I am waiting for a vertobroplasty operation, one booked was cancelled due to my being in hospital with a non – myeloma related problem ! ).
Good luck for the future, best wishes, Jeff

• This reply was modified 10 years, 2 months ago by  jeff605.

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