This topic contains 19 replies, has 9 voices, and was last updated by 
Pickle2024 11 years, 7 months ago.
Hello all, just been discharged from Hospital after being admitted late Wednesday night with a temperature of 38.5
and feeling terrible. I could see it coming but didn't want to succumb to it. I had diarrhoea for 4 days and had been feeling ill for 2 weeks and it was getting worse. C-Diff was confirmed and I was put on antibiotics through a drip.
I was due out on Saturday but they then found there was a bacterium in the blood that is normally found in the gut so I had to stay put and was put on oral and an infused antibiotic to fight it. I have lost a lot of weight which is because of muscle wastage due to the high doses of Dex. The Diarrhoea lasted for 6 days in all and has now just about stopped. When I was admitted to Hospital I was told by the nurse I was just about Neutropenic even though the day before being told my bloods were ok? The mind boggles. I am off everything now and feel great for the first time in what seems like an age. No Dex, No Rev, absolutely nothing and my blood sugar has gone back to normal.
I do have to take Potassium tablets and antibiotics for one week but that's it. I see the Consultant on Wednesday to discuss how my treatment will progress but Dex will be cut to the minimum and that will allow my body to recover between cycles. Dex has just about wrecked my body in lots of ways. I am just skin and bone with no shape at all. My arms and legs are the same width top to bottom and I don't have any hips so my trousers won't stay up lol.
It has a lot to answer for and I am determined not to allow it ever to happen again in the future and I have made this clear to the doctors in no uncertain terms. I know it has it's uses in fighting MM but it must remembered it's we the patients that have to suffer the side effects not the doctors and it's our quality of life that is on the line so getting the dose right is very important.
Good health to all.
Keith.
Hi Keith
You have been through the wars,while Slim and I have been enjoying ourselves,correct that I enjoyed myself.
I am interested why some people like you and Slim loose so much weight with the Dex but other people put on weight,has anybody come up with a good answer.Slim now weighs 63 k,skin and bones no bum left,try as much as I can but cannot get any weight on him,and because of no muscle left,he cannot even open a fizzy drink.
Its hard to watch,Slim is in remission,but cannot get him back to any form of health,confused,bones ache,legs hurt and taste buds none gone.So tired slept most of the time on the cruise,sleeping more now than the earlier days.they just tell me he needs building up:-S
If you get any explanation why Dex effects peoples weight differently I would like to know.Love Eve
Hi Keith
Well we are doing this the hard way 🙁 but I think its a Man thing?? we know its on its way but we/I sit and wait it out where we should be knocking on the Dr's Door at first sign of dodgy problems:-S
Am pleased you are better to leave Hospital they aint that good for ur health :-0 I was skin and bones when I first got MM but after SCT soon put the beggar mback with a Vengance.
Stay well and stay out of the hospital 😎
Tom "Onwards and upwards" x
Thank's Tom and Eve for your posts. The question you ask Eve why do some gain weight and others like Slim and myself lose it is a good one. I had a chat with a Consultant on the ward yesterday about that very point. She said that because I was taking a very high dose of steroids they were causing the muscles to shrink and because muscle weighs more than fat the weight loss is more drastic and harder to put back on. She said protein foods like meat,eggs and fish are a good idea and maybe certain supplements would also help. Fatty foods will not be of much help at all. Does Slim either now or previous been taking a high dose of steroids? I have been eating for England while in hospital and I said to Sue I'm sure I've gained and I'll get on the scales when I get home which I duly did and guess what I lost 0.4 Kilos can you believe that?
I just don't know the answer Eve but I'll certainly keep asking. I have to sit on a soft cushion as I have no backside and literally sitting on my bones and the skin hangs off my arms and legs as I don't have any muscle to support it.
You look on the net and there is plenty of advice on how to lose weight but hardly any on how to increase it.
But we'll keep trying.
Take care.
Keith.
Hi Keith
Thanks for that info:-)
I cannot get any protein in Slim,gone off all meats fish,only thing is eggs,so egg and bacon,ham egg and chips lives off them given up trying good food,My weight has gone up because I cannot keep eating different food,if I eat Slim eats.:'-(
At the moment very p—-d off,thought the cruise might help,he gets a fixed idea in his mind and he will not budge,will not try supplements,they have a shot which is 100 cal,just a mouthful would not even try that.
Slim has used cushions for a very long time,his bones ache ,I try telling him that he must eat protein,to put it bluntly its like looking at death warmed up,but they tell me he is alright!!!!!!!!
Am I happy,??? no load of rubbish he has not put on any weight since leaving the hospital on the 2 of June 3 months If things do not start picking up,i am going to find a door stop to park on.
How come other people balloon with Dex !!!! just worried should be improving by the day,starting to waffle.
Hope thing work out for you.Love Eve
Hi Kieth
sorry you have been so ill the steriods had the reverse effect on me i put on 2 stone I was on 120 mgs a week I am glad sugers are back to normal i hoped they would do
in america they use prednisolone steriod if people cannot take dex its much gentler not as agressive as DEX I have it for my kidneys at the moment and dont get many side effects from it you couls ask your consultant about it
Love Jo x
Hi Keith
Glad you are feeling a bit better, I never put any weight on on the dex either, and lost quite a lot after transplant – it still hasn't gone on again either.
Love Helen
Hi Keith
Profound sympathy. I was just like you a while ago when I was on Velcade Dex etc. I blamed the Velcade but maybe it was the Dex. I will know soon enough as I am now on Bendamustine, Dex and Thalidomide. It will be interesting to see what happens to me next.
I really hope you recover your weight and well being soonest. Quality of life is of paramount importance for sure. Like you I don't want to go through what we have again. Loss of weight etc meant I had zero strength. I couldn't even walk up the stairs. I had to crawl up on my hands and knees. I don't want to get like that again.
Good luck with your fight.
Scott
Hi Keith,
My dad is on his 6th cycle of ctd and has struggled with dex since taking it. The last couple of months he has found unbearable and has lost all muscle tone and struggles to walk a few feet even with a frame. He only just starts to pick up a bit then has to start taking them again and it's making him so miserable. He is also having problems with high blood sugar levels which is being controlled with metformin. The hospital have now mentioned they would like him to have another 2 months worth of treatment which he is dead against, as u can understand. It's terrible watching him suffer and can't wait for it to all finish and for him to get a bit more energy. I hope your feeling a bit better now too
Nicola xx
Hi Nicola
Sorry your dad is having such a hard time with the Dex. My hubby is on 5th cycle and was having such a bad time that the consultant halved the dose. It seemed to help a bit. I know it's hard, but I think it's Dai that says "whatever it takes". Hope your dad starts to feel better soon
Take care
Love Jean xx
Hi Nicola,sorry to hear what your dad is having to go through. I am on Rev/Dex and was told the first 4 cycles would be the worst because of the high dose of steroids which would be reduced after the fourth cycle.
As my PP's were virtually undetectable after 2 cycles the steroids were cut down to the first 4 days of the cycle only
this halfway through the 3rd cycle because of the adverse effects. Like you say you are hardly off them before it all starts over again and my body wasn't getting enough time to recover so I was feeling unwell for 2-3 days each week. I don't know how your dad has responded to his treatment but if the Dex has done it's job in quick time then I can't see the point of him having to suffer as he is. It might be worth speaking to the Consultant and asking if the dose can be reduced.
Best of luck.
Keith.
Dads pp were only 0.1 when he started his treatment and now 0 but its the light chains whichever were high, 7000 and now down to 52. He has an appointment with the haemotologist on 9th oct so will know abit more then. That all sounds good to me but apparently it's the ratios that count so I need to find out a bit more about those. Dad doesn't really understand all the medical terms as he's so busy trying to cope with the treatment and getting better so I try and study up on everything so I have some understanding of what's going on. I think if he can cope with the next couple of months to get the best results that will be good but he's feeling so terrible he doesn't know if he can. It's easy for us all to say "it's only 8 weeks" when he's so weak and low but we want the best for him. Maybe they will look at the dose next time, fingers crossed x
Hi jean,
We have an appt with the consultant soon to discuss his response as he's nearly at the end of his 6th cycle. Was your husband really weak and lost all his muscle tone in his legs? Dad is finding it more difficult as time goes on to get around as he's so weak and tired? He's worried that it won't improve once he's off the drugs, I'm sure it will but take some time. I just keep thinking we must be nearly there now!!
Nicola x
Hi Nicola
Frank takes Dex on the Friday and finishes on Monday. He feels terrible when taking it but its when he stops that he feels so bad. Everyone is different – Keith feels unwell for 2-3 days, Franks stopped on Monday and its just today that he says he feels human again. While withdrawing from Dex he feels wobbly, and has to be careful when getting up from a chair. He says that it's like an alien has taken over his body and he has no control over his own body. Every month he looses about 7 lbs but he soon puts it back on again. Nicola I know how hard it is too watch someone you love suffer like this (there has been many occasions when Frank has wanted to stop) but reading posts of what people have gone gone through and they are so much better no. Please give your dad my best and tell him to hang in there – there is light at the end of the tunnel.
Take care
Love Jean x
Hi Jean,
I read your post to dad yesterday and he was quite relieved that how your husband described the effects of the steroids is exactly how he feels. He said he can feel them taking over his body, he agreed with the alien lol!! He had quite a good day yesterday but is on steroids this weekend and knows what's coming this week. It has to be done and hopefully were nearly at the end, so were keep peddling!!! Thanks again
Nicola xx
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