[DaiCroParticipant]

I had my consult today… before starting Cycle 6 of Rev & Dex.

My consultant reported that my light chains had gone up again… but not too much. It seems they are Yo-Yoing up and down at the moment, which is a bit disconcerting… 300 – 225 – 125 – 212 – 175 – 120 -200. Much of a muchness and, as my consultant said, 'nothing to cause panic'… but have yet to show any indication of either heading one way or another.:-|

Revlimid is not a chemotherapy and its primary purpose does not seem to get light chains/PP's down into remission areas but rather to control and maintain… but I would still like to see a reduction to 50 or under. Still… no panic and carry on regardless… the rest of my bloods, seen in isolation are relatively pleasing, so another month and take it from there.8-)

Here's a thing. This last Cycle (5) has not been my best health-wise. I had 4 days of bad constipation, followed by 4 days of coughing, topped off by 12 days of stomach gripes, sticky temperatures and very 'loose' motions. So at least 20 of the 30 days of Cycle 5 were uncomfortable or downright miserable… and I asked my consultant if feeling ill, or under the weather etc', had an effect on Myeloma… i.e. PP's and Light Chains… it was one of those semi-conversational, throwaway questions towards the end of our consultation that had been bugging me for a few days. The reason I asked it was because my general bloods were not too bad at all and my HGB was 10.1… which, for me, is pretty good. (I half-expected, due to my recent discomforts, to be pretty anaemic and I expected my HGB to be around the 9.3 mark). She smiled and said 'We don't know.' The 'We' being the Myeloma/Haematology medics.:-|

I asked because I suspect that if I had had a good Cycle, with relative good health and no bugs, infections or other drawbacks, that my Light Chains might have stayed down or even fallen. I say this because I have noticed over the past 5 months (Cycles) that when I have been relatively healthy my Light Chains have fallen and when I have had problems they have risen.:-|

This observation is no way empirical or objective, it is simply my general observations that seem to have been borne out by my blood results. But it seems they don't know. I imagine that means that no-one has carried out any research or charted any correlation between non-myeloma interim health problems and disease fluctuation/progression.

But I find it interesting. For me it might indicate that a personal drive towards good health. avoidance of infections and appropriate diet etcetera, might have a reflection on my disease… Cycle by Cycle if not long term… but who knows.;-)

Anyway… as you were.:-)

Dai.

[KeithH17Participant]

Hi Dai,my take on this would be that good health can only benefit the patient as the stronger you are the more prepared your body is to fight against the MM i.e. stronger immunity. The medical profession are always circumspect and slow to acknowledge anything that they don't have a cast iron explanation for but that doesn't mean there's no truth in it. Stay as well as you can I would say and you never know those Light Chains could well start to come down,I hope they do.

Keith.

[HelenParticipant]

Hi Dai
Well yes, only cast iron numbers and in large numbers is medical research measured, but as Keith says and as a nursing observation, better health and the positivity that goes with it often gives better outcomes, for complex reasons. But Dai your numbers are fluctuating in the same plane, not rising, so I'll keep my fingers crossed that this is a good thing:-)
Love Helen

[tomParticipant]

Hi Dai
Well you know this MM lark more than most I would say and am sure you want the levels to drop but a straight line is good so far 😀 , you will have to make sure you are BUG free and those around you are also bug free or just wave through the window at you.

Keep strong My Friend.

Tom "Onwards and Upwards" x

[MariParticipant]

Dear Dai,

It's a rocky road you are following and there does not seem to be much of a straight and narrow as far as myeloma is concerned, but you are one of the best at keeping a postive outlook and I am sure that good general health will help you overall. I know you and Janet follow a really good diet and you both look so well in your photo. Looking well is a curse of the myeloma sufferer maybe, but I do hope you can manage to avoid some of these nasty bugs that have beset you for a while. Tom is right, you may have to wave through the window at some visitors.

I know exercise is difficult for people with myeloma. Whilst he finds walking difficult and certainly cannot run, Steve has found he can swim and cycle. During his velcade treatment he found that doing a little exercise made the side effects, chiefly exhaustion, easier to bear, and gave him more energy in the long run. He has been obsessed with getting fitter before his SCT and is in much better health, apart from the myeloma (how could I forget) than he was last time around.

I hope today finds you on the mend, and that you have a spell of good health so that your next blood test shows a decrease in those numbers, although I agree with the others, your current results are all of the same order of magnitude and therefore an indicator of stability rather than anything else,

Love and good wishes to you both, Mari xx

[DaiCroParticipant]

Hi All,

I was determined to start Cycle 6 with a positive outlook and with a healthy approach and a new regime of getting out into the fresh air and getting out generally.

Monday was good,:-) Tuesday was better… 😀 but I spent this morning monitoring my temperature because I woke with a temperature of 38.3 and a rumbling, grumbling stomach… pretty much the same as last week.:-( After last week's stomach bug I was ready for something different… Instead I have more of the same… so much for the anti-biotics.:-P

I deluged myself with water, drinking 4 litres in 2 hours, opened the window for fresh air and took my temperature hourly. After 4 readings over 38 I knew that I had to ring in.. and ringing in meant going in. :-0

So I had an away day in the Day Case Unit. They took bloods, Temp/Blood Pressure etc. and then more bloods for cultures. Quick efficient and thorough… and when everything was done I had to wait 3 hours for the doctor to become available. She was thorough and after declaring my bloods okay she allowed me paracetamol (received at 5pm) and gave me a different course of anti-biotics, with instructions to come back on Friday for a check-up and to see if the cultures came up with any answers.:-|

Today was supposed to be my DexDay tm… changed fro a Tuesday to Wednesday last week… so now it will be Thursday.:-S

Hey Ho and so much for a healthy start to Cycle 6… 😛 postponed 'til Saturday.8-) 😉 🙂

Dai.

[MariParticipant]

Sorry to hear you are not well Dai, i do hope the antibiotics work and you are feeling better very soon.

Love Mari x

[DaiCroParticipant]

Thank you Mari.

II suppose I am used to seeing it bustling and busy but now it was 5:30pm and the Haematology Day Case Unit was eerily quiet. I was sitting in the waiting area near to the main entrance, waiting for Janet to pick me up, when someone came out of the lift. It was my consultant, head down looking lost in her thoughts. She looked up as she passed me, did a double take and stopped.:-)

I explained about my temperature and the stomach bug and she concluded our conversation by saying that I looked well. I didn't say but my bloods were better than on Monday when we had had our consultation and, like it so often is, if you didn't know I had MM you would have thought that I was quite normal. And that's almost the truth. I told her that if it wasn't for my current infection and feeling slightly hot and bothered, I was feeling good. As a matter of fact I told her that apart from my infection and I felt fantastic. 🙂

A strange word to use but its true.

It's all relative of course. Pre MM when I was the landlord of a pub/restaurant and developing my audiobooks of Welsh folktales I was busy from dawn 'til dusk. I enjoyed being busy and although a few visits to a gym wouldn't have gone amiss, I was, to all extents and purposes, quite fit. Now I only look the part. 😉

I suppose I now base my levels of fitness and wellbeing on how I felt pre-frontline treatment. I tend not to think of pre-MM… not a conscious act but an acceptance of a new world… the world of MM. Following that criteria I did/do feel fantastic within my own parameters. 😎

My mobility is limited due to my extensive bone damage. My orthopaedic surgeon recently showed me a map of my body; not a pretty sight.:-0 Apart from my two existing fractures he pointed out another one (which wasn't bothering me) and several areas where my bone marrow was almost non-existent. He said, quite cheerily, that due to either weight bearing functions or quantity of use, that these areas could fracture very easily and at any time. He made Janet laugh by saying that if he was fifteen years younger when he was a registrar (and not the head of orthopaedic surgery for the Nottingham area hospitals) he would love to put me under and go for it. He said that there was nothing wrong with my skeleton that a dozen pins couldn't cure.:-D

So, I can't walk very far… but I do so unaided. There is very little I can't do that I either want or need to do. I can go out shopping and visiting with Janet and I almost always drive. I can dead-head my roses and cut back selected plants and bushes. I have to have management strategies when I do go out but these are accepted by us both and they work. 😀

So given bones and best practice, staying with boundaries and applying management strategies… I do feel fantastic. Not relatively fantastic… but new world, new rules fantastic.:-)

And that will do for me. 😎

Dai.

[eveParticipant]

Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at Slim,and see a man who is ill,but the strange thing is he did not get the bug,plus in general his bloods are health,or so I am told,but they do not reflect the picture I see,So are you are ill because markers reflect illness or can the markers not show illness,but you can see someone is ill.
Does that make sense Dai.Eve

[DaiCroParticipant]

Hi Eve,

Last winter Janet had two colds, one with a cough that seemed to last an age but I didn't catch either of them. I don't understand why I didn't catch her colds but I am grateful that I didn't.

My stomach bug is/was just that… our Grandson, who stayed with us last Friday has been off colour these past few days, complaining of stomach ache and, unlike him, he has been off his food. Janet had an upset stomach on Monday and felt off colour for a couple of days but is better now. Pre-MM I most likely would have felt the same as Alfie and Janet but now a minor bug has turned into a 15 day ordeal, needing 2 different kinds of anti-biotics to bring it under control. MM amplifies minor conditions and needs intervention by way of anti-biotics or other medications where normally a couple of paracetamol and a days rest will do the trick.

[quote]So are you are ill because markers reflect illness or can the markers not show illness,but you can see someone is ill.[/quote]

I believe both can be true. Yesterday I looked good and hot and very bothered apart I felt good.but the thermometer told a different story. I have days when I feel and look really out of sorts… with no temperature or bodily function issues present. Sometimes MM can catch up with you and give you a bit of a kick but as often as not it is the medication that is meant to salve and protect that causes these off days.

There have been 3 or 4 occasions over the past few years when I have forgotten to take my medication, for instance I made Janet breakfast in bed a couple of weeks ago and I sat on the edge of the bed and ate my breakfast as we talked of this and that. We agreed to get up and go to Grantham to view some sale items… so I finished breakfast and got dressed and out we went. I broke my routine and missed my medication ritual. I realised my error when I started with severe flu-like symptoms around about 1pm. Previous medication misses helped me recognise the symptoms and it being too late to amend the error I had to bite hard and wait for the next round of medication. It made me realise once again the importance of regular medication routines but the nasty reaction was nothing to do with my MM.

Generally I don't look ill… generally I am not ill. I suffer from a disease that destroys my bone marrow, decimates my immune system and makes my skeleton look like a rusty, pockmarked chassis.. but with good bodywork that disguises the underlying problems. But the degenerative issues only occur outside treatment.

Most of my bone damage occurred over the winter and spring of 2008/9 when my Wales based consultant decided against any treatment. Once it caught hold MM decimated my body. If MM had been diagnosed in that year I would now be like a lot of people on this site with few structural issues and able to travel without fear with few mobility issues. I still find his attitude and care deplorable and unforgivable… but this is here and this is now and I feel good.

Dai.

[eveParticipant]

Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.

My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a sick man,that I am told is ok,if I took him to a doctor,I would have nothing but my instincts,so this is were ( you are as good as you feel comes in ).If you do not feel or look good,are you ill???? or do you asses illness on blood works that might not be showing a true picture,may be because of drugs involved EG DEX,

On a more personal note i would send that doctor a post card every year,Saying still alive sorry I cannot invite you to my funeral.I changed Slims doctor after it was discovered by a different doctor in the practice after months of no test,but will not change surgery,as if I have to watch Slims decline so will he and i will be there to remind him. Love Eve

[andygParticipant]

Hi Dai
Sorry to here your going through a tough time again.
I'm with you on looking ok whilst on the inside we are fighting MM. If I had a pound for everytime I was told I looked well I'd be a rich man. Sometimes when I'm not so well I want to shout 'I may look ok but inside I'm dying' but I don't and just smile. I think everyone is well meaning and trying to boost moral but at times I wonder if they really know what MM is all about.
That said I would rather look well to the outside world than look like a victim of cancer.
Take care Dai.
All the best
Andy

[KeithH17Participant]

You've nailed it again Andy, the fact is unless you have this bl**dy disease there is no way anyone can understand how it debilitates us day on day. Since going onto Rev I've become a zombi like figure wandering around in a complete stew. I can't think straight and only have a very brief attention span but yes I look well also,give me a break. People mean well I know but enough is enough I just don't want to hear how well I look however well meaning it is. It's how I feel that matters and I'm wasted and that's a fact end of story. My hope is the first 4 cycles are the worst and then afterwards everything starts to return to normal so I'm lead to believe. By the way our star nurse Kat phoned me this morning asking how I was…what a star she is. Second cycle starts Mon,can't wait LOL.

Stay well mate and let's see those horrible PP's start to tumble.

Keith.

[DaiCroParticipant]

[quote]'I may look ok but inside I'm dying'[/quote]

Thanks Andy… I suppose we all have felt like saying that at one stage or another… but because I believe in the law of attraction… i.e. we get what we think… these days I prefer to think:

'I may look ok but I have a terminal disease… but a terminal that is several stations down the line.' 🙂

I am now at station No. 4 with station No. 5 a long way down the track… that's what I have to keep thinking and believing… I believe that is the only way to think. 😎

Hi Keith,

I have no doubt whatsoever that it is the Dex that is making you feel as you do and not the Rev. I have no idea why your consultant is throwing so much at you and I am in no way saying that he/she is wrong… I am no medic… but I do know that my dose of 40mg, once per week, is the maximum that my consultant would consider for me… to be adjusted when my light chains come down and stay down.

[i][b]Quality of life is so important to us MMers and our treatment should not reduce that significantly, either to hammer the disease or for the sake of experimentation. For me you seriously need to ask if this extraordinary high dosage has worked befo[/i]re.[/b]

The American way seems to be 'less is more'… a concept that my studying of MM leads me to concur with. If your quality of life continues to be so affected after Cycle 2 I would seriously consider asking/demanding a reduction. But please don't consider any action until you have looked into Dex doses generally and specifically… mine is a gut reaction based on how my dose of Dex affects me… and I am looking forward to the day when mine is reduced because I know my quality of life will improve greatly when it occurs. 😎

Dai.

[KeithH17Participant]

Thank you Dai and I do agree with what you say with regards to the Dex. Yes it is tough but as I said in my previous posting I'm keeping faith in the hope that the first 4 will be the worst and that after this period I'll be back down to the first 4 days of the cycle only and more stability. I have to say I have full confidence in the Doctors and hospital which is why I will battle on. No fight worth winning is easy and it's the winning that's important. I just have to do all I can to beat this thing.

Hope things improve for you also,I think we both deserve a bit of a break.

Take care.

Keith.

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