This topic contains 12 replies, has 8 voices, and was last updated by 
tom 11 years, 10 months ago.
Hi all, yes I've turned full circle once again with the dreaded Diarrhoea which hit an all-time high last night.
Terrible cramps and continuous running to the toilet was how I spent my evening. I just feel totally wasted and all I can do is keep drinking water to stay hydrated. This morning I don't feel to bad but it all seems to start at night for some reason so I'll be ready.
Stay well everyone.
Keith.
Hi Keith
I think I have come out in sympathy,think there is a bug going round,thought i was getting better then went down again,doing my best to keep away from Slim
With both of us being ill,I feel quite vunerable,as not use to this,we are both walking round like two old codgers,moaning every step of the way,dehydration makes your bones ache headaches,so if you cannot get enough water down you,try tablets to keep you hydrated sell them in Boots.Eve
Hello Eve, I've been out today and up to now no horrible Diarrhoea. You talk about Slim being unsteady on his legs due to the Dex well so am I. I totter about like an old man and I'm as white as a sheet. I'm still passing blood back end on and off depending on how frequent the Diarrhoea bouts are. I can tell you I feel as if I've aged 10yrs in the last 2 weeks. It might be killing the MM but it's a toss up as to who succumbs first me or the Cancer it's as hard as that. When I was at the Hospital yesterday my Dex was rescheduled meaning in addition to the 4 days on instead of stopping on the 5th day I will be taking 10,5,3,1 over the next 4 days. Yes it's a gradual reduction to minimise any withdrawal symptoms but is also an extra 38m every 4 days which equals an extra 152m added to the 320m a grand total of 472m each cycle which will be for 4 cycles. I think there's something wrong here with the calculations and I'm going to check with the Hospital next week. Surely the last Dex day should be scaled down and not given in addition to the normal four days but instead of. That is one heck of a lot of steroids and given how I am feeling it's going to be a really tough time for me. On the plus side the leg cramps have gone although I still have the hand spasms. But all in all if I can crack the bowel problems I'm Not at all bad but the Diarrhoea is the issue I must get to grips with.
Keith.
Hi Keith,
I've been on 40mg once a week from the start… the same dose as on CDT & Velcade. 🙂
I have a DexDay TM on Tuesdays, where I basically veg out with a book, Kindle, iPad and TV… with several changes of tops due to the excessive sweating (though I have to report that the ever observant Janet has noted that Cycle 4 had four changes and Cycle 5 only 3… so perhaps I am finding a balance). But stlll, going out on the DexDay is not really on. 😐
My GP was astounded that I was taking such a high dose at one go and suggested I talked to my consultant about spreading he dose… so if you are taking a higher dose that 40mg something seems seriously amiss IMHO.:-(
Just re-read your post… You are taking 420mg per Cycle… I am taking 160mg per Cycle… if I had to take an extra 260mg per Cycle I'd be half dead. Ring in tomorrow and get it checked out Keith… I can't see that being right in any way, shape or form my friend.>:-(
Dai.
Hi Keith
Sorry to hear about the continued gut troubles, it really is a pain in the 'wotsit', I have got used to it now and having had a break for two weeks, I know it is a problem that I've got used to now, after 8 cycles.
Anyway, the steroids, get on the blower to the consultant in the morning, I'm with Dai here check out that dose with the organ grinder, just to be sure.
Hope you settle down soon, it's so horrible when you feel like this.
Love Helen
Thank's Helen/Dai for your content. Like you Dai I'm also sweating buckets and I've adopted an ashen colour akin to a block of limestone. Tiredness,Diarrhoea but now I think it could be Constipation again real fun this. Yes I'm going to contact the Hospital tomorrow as they forgot to contact me today as they promised. This Dex thing is real strange, the way I understand it goes something like this 20,20,20,20,10,5,3,1 then it starts allover again and no breaks apart from when the cycle ends…if I'm still around by then LOL. I think where they have gone wrong is they should have dropped the last 20 and used the 10,5,3,1 in it's place instead of as well as, which would be a more gradual withdrawal. Does that sound right to you guys? Maybe I'm reading it wrong but I don't think so but I will be checking with them. In the meantime I'm going for an audition to be an extra in a film. It's the latest version of a famous George Romero blockbuster Night of the Living Dead…there's always a silver lining LOL.
Keith.
Hi Keith
Read your post abouth the Dex with interest. Frank started the first cycle of CDT last month. He was taking 20 x40 mg on the first day for 4 days. The withdrawal was not nice. He felt so peculiar. When we told consultant she decided this month to wean him off. He took 20,20, 20,20,5,4,3,2. Frank said that he is going to,tell her that he is going back to "cold turkey" as the first cycle he felt awful for about 3 days, this cycle he stopped them over a week ago and the old frank is just coming back,
Hope you get it sorted soon
Love Jean
The trouble is that while throwing large doses of Dex at the cancer can have magic results, it is a high risk strategy regarding side-effects.
The worst side-effect of Dex is not the range of beauties that we can see and feel but the silent one… the one that allows, protects and disguises infections. Infections appear, develop and grow because Dex encourages their existence, feeds them and then disguises their effects until they have taken full hold, making the treatment of them far harder that that of ordinary infections which can be recognised, monitored and treated relatively early.
So it is of utter importance that we are taking the right dose at the right time of our treatment… especially if we are prone to infections. Of course it is a problem for people like myself and Keith who have taken Dex many times before reaching this stage… and any pre-existing proneness to infection has most likely been as a direct result of our exposure to so much Dex… it's a vicious circle… and one that we need to break or at least one that everybody is aware of, with the situation closely monitored.
Dex is my friend… but preferably a friend in small doses.;-)
Dai.
well,spoken to the nurse today and my worst fears have been confirmed,I will be taking every day and without a break apart from when I reach the end of each cycle and this will be for the first 4 cycles at which point the dose will be reduced. She said they wanted to throw as much as they could at the MM in the early stages therefore the main dose of 4 days at 20mg would continue followed by the next 4 days at 10,5,3,1 so withdrawal will be minimised. It's a question of toleration and apparently I am even though I don't feel like it. But there is some good news in all of this in that things seem to be working. PP's have dropped from 29.66g/L to 15.2gL in just over 2 weeks Platelets 81-55 Neuts 1.3-1.5 will both need to be watched and other bloods ok.
At least I know what's happening to date,have a meeting with Consultant next Monday to discuss how the first cycle has gone.
Keith.
Good work Keith… At least you know the plan and it does seem to be having a good effect.
I have my consult next Monday too… all I want is the okay to carry on – to Cycle 6. my ought chain reading should be back but I am not too concerned… I don't suppose it will have dropped too much but my body tells me that it hasn't't risen much if anything at all because know that my infection seems to have abated my body feels quite good.
Here's hoping that you pp's continue to drop… Hopefully to 0 but al least to a plateau that can be maintained for a long, long time.8-)
Dai.
Hi keith,
Glad to hear you are making sone progress…..easy for me to say, no pain no gain ha ha !
Good luck with your consultation Dai
Vicki and Colin x
hi Keith
I had the same problem when I was on Velcade. I lost so much weight the doc told me I was too ill to continue that treatment. He switched me to Revlamid. Maybe they can switch you to something else if its too bad for you.
Good luck. Keep fighting.
Scott
Hi Keith
Well you have had it all the runs and the block?? am pleased though that things are moving along nicely.
Keep at it M8
Tom "Onwards and Upwards"
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