[jeff605Participant]

Hi Julie, I had this problem, still get tired quickly and can fall asleep easily when I sit done – even on the loo!! It was put down to low calcium originally, which was put right to an extent by meds, I also had low ( 8 ) heamoglobin. this is now up in the 10s, still a bit low but I feel so much more energetic, and am able to do 3 – 4 hours activity, with a break. Hope this is some help, Jeff

[jeff605Participant]

Hallo all, Well , now just about to start 3rd cycle of Revlimid and Dex, and have some blood test results at last. My para protein has dropped from 29 at the beginning of the treatment to 7.6 in 8 weeks, which , although no one can say if this slide will continue or not, is really a positive result, needless to say I am very pleased. I have tolerated the drugs well with very little ill effect. The last month or so I have been feeling well and have been quite active. If it wasn’t for my back problem, I’d hardly know there was anything wrong with me. ( with regard to my back, I’ve managed to establish that I am actually on the list for a vertobroplasty, only two patients in front of me ).So by and large a welcome less stressful spell. Thought I would update how things are going after all the kind good wishes I’ve received.Jeff

[jeff605Participant]

Hi,Richard quick update, I went to the clinic with my daughter – she is under investigation for high protien levels, but there is some doubt this is Myeloma – and as I was on the 6 week of Dex/Revlimid but had had no results to know if it was working I asked the consultant if she could look up my results which she did. Paraprotein down to 8, the lowest it’s been since I started the rollercoaster ride !! That’s from 29, so I am encouraged by this drop. Also feeling pretty fit too,and have been told that there are two in front of me waiting for a vertobroplasty. Jeff

[jeff605Participant]

Rosie, thanks for a lovely reply, I really appreciate it. I’m sending you a private message, as I don’t want to clutter up the discussion page with what is really a personal matter, we all have our difficulties and problems with this rotten disease Jeff

[jeff605Participant]

Dick, thanks for that, I’m living in hope over the Revlimid, comments seem mainly optimistic. Jeff

[jeff605Participant]

Rosie,You sound as though we are in a similar situation, although I am dealing with it on my own as my wife of many years died not long before *I became active, after some three years smouldering. I actually have two vertabra that have collapsed, causing some 4 – 5 inches height loss and some mobility problems. I signed the premission docs in Nov, and am still waiting for a vertobroplasty op.As you said, I probably should know more than I do. I have been on 6 courses on CDT, plateaued at 9 p/p, went onto Velcade for two courses did very little, came off every thing for 4weeks p/p up to 29, and am now on Revlimid. I have just started the second month on this with no idea if it’s working as the results weren’t available ! The registar I saw said as my report on how I was ( pretty good actually with no real side effects ) was all positive and looked so well I should carry on with it . Very professional, I thought since I probably should have asked questions at this point, but we know how it is when you are in there!! . So, I am waiting for the Doctor’s letter with anticipation. I am also distracted from my problems by a daughter with severe condition – just back after 6 weeks in hospital- and requires a lot support. I decided to take the one day at a time route too when all this started, not easy though is it
Best of luck for the future, Jeff

[jeff605Participant]

Hi,Still confused as to the position of Myeloma in the rarity scale.I have realised that the calculation of expected/actual numbers of suffers from Myeloma in a town like Melton is quite complex ( and I suspect beyond me),taking into consideration of survival times,etc. I have noticed that in the Leics clinic I attend that there is a predomiance of white patients with a comparutively few asian appearing patients and very few of African descent appereance. Well, now need to get back to trying to find out if my 2 month course of Revlimid is actually doing anything positive, no results through from the 1st months reveiw!! As though there’s not enouth to worry about “routinely” with having Myeloma!! Jeff

[jeff605Participant]

Hi, if what you say is right, I stand corrected, I understood that Myeloma was one of the rarer cancers, so perhaps my thinking that there is a high incidence in my area is mistaken too.Jeff

[jeff605Participant]

Hi, Dick, The fact that struck me regarding the incidence of Myeloma among my workmates was that this cancer is recognised as being a rare classification, to have this many of us with it in a group where not all of us lived in Melton, the commonality seeming to be where we worked, seems significant. As you say, this may well be a coincidence. I suspect it would probable be put down to a statistical ” blip “, it would certainly be interesting to have it investigated by a more scientific mind than mine !! Jeff

[jeff605Participant]

Hi, Tony the big problem of course is that we don’t know what causes Myeloma, so really have no starting point.Yes there was a Thor missile site just outside Melton, and as I think I mentioned previously, many of those I know with Myeloma worked at the petfood factory. I have wondered if it would be possible to get some idea of the total numbers involved who developed Myeloma who worked in the factory – i.e. production workers, etc. I was very much maintenance orientated.The consultants have shown only slight interest when I have mentioned the numbers involved and that many of us worked together. Jeff

[jeff605Participant]

Hi, Dick and Tony, I’m 75, and retired early many years ago. Most of my workmates with Myeloma would be between 65ish and 70ish or thereabouts.So although not a young group, we are comtemparies in processes and substances exposed too. Jeff

[jeff605Participant]

Hallo, All.
I’m slowly getting my head round what the readings/ figures mean that I receive after each clinic visit in the copy of the G.P.s letter from the consultant. Although interesting, I don’t quite know what steps I need to look at taking to improve any of these, apart from following the advice and taking medication as provided. I see – and I am not being critical in any way whatsoever – remarks such as above ” need to concentrate on the couple of areas of concern “, what I don’t understand is what can one do to improve these areas. Am I missing something ? I am in the situation of CDT plateued, Velcade ineffective, and am now on Revlimid, ( 1st cycle ) and am quite nervously waiting for the next clinic a week on Thursday, so any thoughts on this will be much appreciated.
Regarding Melton Mowbray, I live there, and keep meeting fellow sufferers or relatives, there seems to me to be a lot or us for a fairly small market town
regards, Jeff

[jeff605Participant]

I discovered that once I realised what was causing my deep depression on the second day off steroids (after about four cycles of Dex I was shouting at the cat who wanted feeding and thought ” this isn’t right” and started trying to find out why) I found it much easier to deal with,( i.e.stop indoors and don’t speak to anyone !!!) . I am not treating this lightly, I know how horrible it is, I am starting a new course of Revlimid and Dex tomorrow, and not looking forward to the effects of the dreaded Dex at all. So don’t think you are alone in this, it’s one more part of fighting this horrible disease. However, it is so distressing, I do think we could have better counselling prior to starting taking Dex.
Best wishes for the future, Jeff

[jeff605Participant]

Just reread my post after your comments, I’ve not started taking the meds. until
Monday, so don’t actually know how I will tolerate them yet. However many thanks for the kind thoughts, it’s nice to know there are such caring people here offering support, something I greatly miss since my wife died. Regards and thanks again Jeff

[jeff605Participant]

Hi all, Just come back from a clinic meeting and have been put on Revlimid and Dex. This is after 6 cycles of CDTa,( paraprotien down to 10 from 49 ) and two of Velcade, which didn’t lower my paraprotien reading at all. This morning after 10 weeks off every thing, it has been decided to try Revlimid and Dex, so I trawled through the posts and found this one. So far I have been very fortunate with side effects, and am wondering what to expect from this combination – I know very well what to expect from Dex, the cat wouldn’t be happy if she knew I was back on it !! I am actually quite happy now something is happening, I got pretty down when off everything and nothing happening. Any comments on what I can expect and anything to look out for gratefully received
Best wishes to all, Jeff

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