[clarabellParticipant]

Hi there, I know there are many people who are aware and have suffered the side effects from CTD but as my Dad is on this course of treatment I thought it might help other newbies if I posted what my Dad has had so far. He is on second cycle of CTD and just finished 5 days of RT.

Swollen Ankles
Mood swings (due to the Dex I believe)
Feeling cold all the time
Severe constipation (to date he has taken senokot, lactolose, movelat, dulcoease) to no avail! apologise for not spelling them all correctly:-)
Shakes and dizziness which comes and goes.
Nausea (but no sickness)
Extreme tiredness.
Rashes on different parts of his body.
Finding it very difficult to drink 3 litres of fluid a day even when that includes tea, coffee, squashes.

Taste buds not being what they were.

I would point out that he has had these side effect but not all at the one time and has up until last week managed to go to work and has coped remarkably well. He hasn't been at work for just over a week due to getting RT and hopes to go back to work in a weeks time. So even though it seems there are rather a lot of negatives above they don't all effect you at the same time and you can keep going doing your routine if you feel up to it. Positive mental thinking and all that jazz!

Best Wishes to all

Clara xxxx

[kaychappersParticipant]

Hi Clara
Just wanted to thank you for posting your dads side effects as I have had every one of them as well. I am just about to start my 4th cycle of CTD. I started very well apart from being allergic to allopurinol which covered me head to foot in a rash – very attractive ! I have found I am getting more tired and feel "not quite there" for a few days after steroids, but apart from that I am able to work when I can and keep my life as normal as possible. I find prunes prunes and more prunes help, but still need help with a laxative now and again. I think it is quite normal when you are on Thalidomide. Not pleasant but the outcome will be worth it 😀 I wish you and your dad well.
Kay x

[MinParticipant]

I Clara
I recognise all of those side effects, brought it all back to me, how Peter was when he was on CDT.
Im so pleased to hear your dad is still going to work with all that is going on and not exhausted
The drinking one was the one that did and still does prove the worst one. You can do things to help the other side effects like wear a jumper to stop feeling cold, anti histamines for the itches Take the anti nausea to stop it!
You didn't mention any [b]hiccups[/b], that was an annoyance especially at bed time, as well as the leg cramps.
Tinned figs are good as well as hard liquorice for constipation.
If anyone has the secret to getting 3litrs of liquid down an mm patient i want to know about it as it caused all the arguments in my house when I notice a glass not drunk. I diy drip would be a great invention.mmmmm got me thinking. He never used to have any problems knocking back the bacardi and coke before he was ill.
Does it actualy say no alcohol? Of course it must do as he hasn't touched any in 20months. Probably accounts for the mood swings!
Min

[eveParticipant]

HI everybody

Thank you for confirming all those side effects poor Slim going through the lot, hard to watch at times.The only thing he has not done is put on weight,in fact this worries me,tried every thing,he cannot stand any of the soups and drinks to build him up,and his food intake is very poor,says he feels full all the time,would be grateful for any ideas
On a good note he is very good with fluids managing lots to clear his kidneys Having another bone infusion the end of this month so this should help with bone pain.
eve

[PerkymiteParticipant]

It is amazing what we have to put ourselves through 🙂 Like everybody else I have had them all. I am now 3 months post SCT on an MM Plateau of below 3. I still suffer from the odd cold spells, normally when I am getting tired. And, I still get the odd itchy spot although that I think is due to the anti-biotitic I take every Saturday and Sunday. Otherwise I am in the clear.

Most days I drink the 6 pints (3 litres) quite easily. I always start first thing in the morning, about 6:30 a.m., with my morning tablets. And I refill the glass and leave it on the side, No 2 is by 10:00 a.m. , No 3 is by 1:00 p.m. , No 4 is by 4:00 p.m. No 5 is always after dinner around 7:00 with my evening tablets and the last one is before I go to bed with my last tablets of the day – Loron. There are days, when I am going out for example, when I do not clear all 6 pints. I just drink as much water as convenient. I was told the 6 pints does not include Tea or Coffee which are Diuretics and do not count.

What NO alcohol. I have been told right from the start and all through my treatment that I can drink alcohol. I drink Guinness, Brandy coke and Red Wine. I checked with the Hospital Pharmacy because I wanted to clear that it was ok to occasionally have a pint in the evening before I took Loron (I have to have 2 clear hours no food or milky drink either side of it). And they always say Guinness is ?Mother Milk? , 😀 . The head honcho in the Pharmacy?s words to me were ?I want you to enjoy yourself none of the tablets has an Alcohol restriction on it. Have fun?. What a nice man 😎 . I would recommend you check with the hospital Pharmacy, give the man a drink.

Kindest regards

David

[brochoParticipant]

Hi Eve I wondered if you have tried Maxi-Joule to help get extra calories into Slim? It is a white powder , tasteless which you sprinkle onto or into foods and it bulks up the calorie count It can be put on anything from mashed potatoes , scrambled eggs , in fact just about anything ! I used to have to use it for my very fussy daughter who has always had low weight and poor appettite. It should be available on prescription Sorry if you already know about this just though it might be worth a try love Bridget x

[eveParticipant]

HI Everybody

Thanks for the info on Maxi-Joule Bridget,I tried doctors for a product you could sprinkle on food,told only certain products on nhs.E Mailed one manufacture who sent soup samples through to district nurse for me,not very nice.Will try this see if it works.
Perkymite I would give anything to see Slim drink,a glass of wine or even guinness,have tried port,irish cream,brandy all to no avail,from a man who drank like a fish,he has not felt like a drink for over 6 months.Doctor told him he could have a drink,and he often feels like one but one taste and it is wasted.Its the same with food,the dog and I are getting very fat:-)
Last weigh in he was 11st 3Ib height 5ft 8in,before illness 14st,height 6ft 1in.Need to find something to build him up,It,s hard work as he hates any kind of fuss,I,ve turned into a nagger:'-( >:-(

[BADGERParticipant]

Hi EVE

have you tried good old vanilla complan I made a milk shake from it with fresh bananas or strawberrys you can also thicken savoury soups with it there is also something called build up they give it out in the renal clinics
pobably not all that pleasant just a hold your nose job

Love Jo:-P

[PerkymiteParticipant]

Yes Jo, I was given that during my SCT when I could not swallow due to a very swollen throat.

Strawberry Complan, Strawberry Jelly, Vanilla Ice Cream and a fruit Orange, banana etc…) all whisked up into a giant milk shake. The nice thing was I could just sip it through a couple of straws, lived on them for several days.

Kindest regards

David

[onlymeParticipant]

Hiya… been wondering how you and your Dad are getting on…. We are at the same point I believe… My mum started at the same time… Mum has had nearly all the same side effects and is battling on and we are all so proud of her… Few little flutters with her atrial flutter but we are hoping that it is being looked at by cardio spec.. Fingers crossed .. last readin of pp was 26 to 14 so we well on the way..
We are all still taking day by day and hoping for the same outcome at the end…
Hope you are coping ok too..Its always giong to be a worry for those looking after their nearest and dearest, I am little bit nervous of the next stage if we get the go ahead.. but am sure with this site we will all battle through regardless!!
My mum doesnt want to know too much, so thats prob a good thing.??
Anyway stop babbling and I am sending my love to you

Only Me
xx

[clarabellParticipant]

Hi Everyone,

David can I just say your info on getting fluid down is working a treat for my Dad who is now pouring pints of water at said times instead of continually pouring smaller glasses time after time and he is now finding it easier to drink so much so thanks for the tip!

Only Me! Good to hear from you and that your Mum is doing so well Dads levels dropped from 17 to 8.7 after 2 courses of CTD they delayed his 3rd cycle due to him being poorly for a couple of weeks and being constipated for 9 days but he is now back on track, not managing work now he's had 3 weeks off but determined he will get back asap bless him, Consultant said that they would consider him for SCT and gave us some info to take away, does seem alot to go through but if it means longer between the PP levels increasing he is up for it even tough its a few months down the line.He has looked at claiming some benefits but does't think he falls into the catagory of receiving them so hasn't completed the forms, I think this is a way of keeping him going that he will get back to work soon!
It has been quite stressful but I think we are all getting to terms with the understanding of treatment, timings and hospital visits, wishing you and your Mum all the best and keep in touch, love n hugs Clarabell xxxx

[PerkymiteParticipant]

Hi Clara I am pleased that I have managed to help your Dad.

I know your Dad hopes to get back to work but can I suggest you go and see the Macmillan Nurse at your local hospital and consult her about claiming benefits. They are the experts I can assure you.

Kindest regards

David

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