[jeff605Participant]

Hi Susie the Leicester Royal Infirmary oncology unit now always sends copies of the Doctor’s letters, weren’t so good in the past, usually about 2 weeks after the event. As you say, a useful reference to check back on events and dates, and the consultant’s remarks.
All the best xx

[jeff605Participant]

Hi Peter, I would be inclined to take action tomorrow rather than wait for the consultant meeting as it is a fair while away, and things can change quickly. Also you may be able to find help with the pain, even if it’s only to lessen it to a degree, as happened to me with my back problem. Don’t worry about being a nuisance, that’s what the system is there for!! The more I think about it the more I think you should get in contact tomorrow, Peter. Hope that this helps Jeff

[jeff605Participant]

Hallo Nick, done it again came off this page lost a long script! Try again!
Nick, sorry to hear things haven’t improved much for you. The lack of mobility is so limiting,and constant pain drags you down mentally as well as physically as we both know. I have many of the problems that you have, tiredness and fatigue in particular. I hope things get better for you, it takes a while for any improvements to show, so hang on in there! I was improving, mobility and in fatigue particular, and learning to handle the fatigue better, but 2 1/2 weeks ago started getting a back ache, fairly minor, but it got progressively worse, until I couldn’t stand up or walk without support, and very painful. Contacted my GP, who upped my morphine to double my regular dosage This has helped a bit but still can only just about walk round to look after myself. I am concerned about this, as I have areas of spinal cord compression that are at risk.Shall have to start shouting tomorrow!
Hope all goes well for you, keep me up to date, best wishes for the future Jeff

• This reply was modified 8 years, 8 months ago by  jeff605.

[jeff605Participant]

Hi, Vicki. Just a quick one regarding the ball, where will it be held? Need to know how far away from me it will be before thinking about it.
Thanks, Jeff

[jeff605Participant]

Margaret, I have been – cycle 23 – of Dex and Revlimid for nearly two years. The symptoms you have described about sums up mine! Get all of those to varying degrees. This morning I can just about support myself standing up and walking, this will last for an hour or two. Breathless is getting worse, any activity causes it now.Interesting that you get hand cramps,I wasn’t sure if this was a side effect. The big Plus is, as with you, it’s working it’s magic
I am 77.
Hope that it’s not too distressing and limiting, best wishes, Jeff

[jeff605Participant]

Hi, Phil, good to hear your good news,long may it last, gives all of us struggling on hope. Best wishes for a long future, Jeff

[jeff605Participant]

Hi Eric, I am just coming up to my Revlimid free week, I shall monitor it carefully and see how I feel day by day, and get back to you Jeff

[jeff605Participant]

Hi Mavis, thanks so much for your kind thoughts, it means more than you realise for me to know that there are people out there who care. I am fortunate in that I have a close family near to me who are supportive, but I don’t like to put too much on them, they have their own lives to live and way to make. My way of dealing with things is to get up and get on with it, which up until now has worked well for me, however at present I am finding it quite difficult. My biggest worry is maintaining my positivity.
I am working on dealing with the fatigue problem, it seems to be a matter of “going with the flow “, resting when my body tells me to,and slowly getting on with whatever, and stopping as soon as I start feeling any strain or tiredness coming on. Frustrating, but if that’s the way it is,I shall have to live with it, like so much with Myeloma.
Thanks again Mavis, and to all of you who have contacted me with kind thoughts and support Best wishes to you all, Jeff

[jeff605Participant]

Hallo Eric, I was drifting through the posts on a steroid night and found yours. I am in about the same position as yourself with results, haven’t had a SCT, and am on the 21 cycle of Revlimid ( same dose and frequency ) and Dex.
I was interested in you saying about your fatigue, I have hit a real high level of this, really tired out, falling asleep very often. This is a new level of this, the consultant didn’t seem concerned, apart from mentioning that my haemoglobin is a bit lower – 8.9, had I any evidence of blood loss?, and that they would keep an eye on it. Apart from some side effects I have had since the start of Revlimid, i.e. sweats, quite severe weakness and unsteadiness at much the same pattern as yourself. Whether I have bowel looseness is difficult to say as I have an ileostomy, but I suspect it explains the sudden variation in output from the stoma. I am hoping for a reversal of the stoma, this is something I will need to talk to the surgeon about.
What interests me, is what is due to Myeloma, and what is due to the treatment. I believe in thinking ahead, which of these it is will affect life style plans for the future.
An aside, when the register I was seeing was writing out the prescription for the Revlimid, she said, cycle 21, it’s free now, keep it up for another 200, and we’ll bankrupt the b—–ts! Not heard of the it’s free bit, has anyone else Jeff

[jeff605Participant]

Hi Tony,happy new year to you and all our readers,let’s hope for many more years of them. Well said in your post, it’s easy to forget all that’s done for us when we are sitting in the waiting room at LRI with appointments running 2 hours late!! It really is an interesting time, there is such a lot of research in so many directions, several sound promising. Surely at least one of them will do the trick!
Hope to run into you at the clinic, Jeff

[jeff605Participant]

Hallo, all, I haven’t posted for a while, my middle daughter who I have mentioned before (she suffered a brain bleed a while ago unfortunately was finally overcome by the long term effects of her ongoing problems and passed away at the end of November, which although not a complete surprise wasn’t expected and needless to say was a big shock.
Life being what it is, at the same time I am feeling pretty fit, with improving blood results. However, I am finding that I am suffering from spells of extreme fatigue,such that often in the mornings I haven’t the strength to stand up for a shower! I often fall asleep at about 10.30 in the morning if I sit down, however the plus of this is when I wake up I feel fine and ready to go. It does seem connected to the Dex/ Revlimid regime, with variations though the course of the Dex week. I feel for others who suffer such fatigue, if you are or have been an active person it is so frustrating! However, the only way to deal with it does seem to be to let your body be your guide, sometimes life demands make this difficult, I know.
An aside, I have found it very difficult to maintain my positivity since my daughter’s death, and can only hope that time helps alleviate this.

• This reply was modified 8 years, 10 months ago by  jeff605.

[jeff605Participant]

I took curcumin for many months while smouldering. When my wife died I sort of went to pieces and stopped several things, such as buying newspapers, watching Tv, and also taking curcumin. Within 2 months my Myeloma became active and I started chemotherapy. Coincidence? Who knows. Jeff

[jeff605Participant]

Hi, an interesting Post. I am in the situation of hopefully being offered a reversal of a stoma I ended up with after an emergency operation last year. My myeloma is in partial remission, and stable at the moment. To have this operation I shall need to come off Dex for a month or so, the surgeon flatly refuses to carry out the operation while I am taking it, which is a bit frightening. If offered it, I shall have to evaluate the obvious benefits against post op problems which can and do occur, recovery time, and – how long have I got left, which is so difficult if not impossible to estimate I am gathering from this post, and previously information gathered. Looks like it might be a heads or tails decision!
Having Dex problems ( I am on Dex and Lenlidomid, 18 cycle, P/ps at 1.4 ) so will finish now, go to bed and think this over – and over – and over. Good old Dex !!
I am in a much older age group than those of you going to have or having S.C.T. and wish you all success with this arduous procedure . Jeff

[jeff605Participant]

Hi, Andy, so pleased to hear of your progress, and your recovery from your hospitalisation. I had a similar ” out of it ” session while in I.T.U. following an emergency admission. On recovery, I was about to put pen to paper to write to the newspapers asking why our hospital was being run by a private concern, when I had to revisit the I.T.U. and realised my memories were completely false ! but very real. Even after 18 months it still troubles me, I can clearly remember names, faces, etc. Strange thing, the brain.
Andy, keep up the good work, it’s so frustrating being held back when your mind wants to go and your body won’t, but with your determination and positivity you will get there. Best wishes and speedy progress, Jeff

[jeff605Participant]

Hallo Andy, sorry to hear about your experiences, no doubt you met them with your usual resilience. Very pleased to hear of your recovery, I hope it’s not too slow, I know only too well the frustration continued tiredness brings with it.
Just keep taking it one day at a time, and as you say, each one we get through is a gift Best wishes,Jeff

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