[jmsmythParticipant]

Hi all

Frank had to go up to the Unit today as he was feeling so bad. He has 3 weeks to go onCDT and his feet and legs just swelled up. He had bad tingling in his fingers and his temperature was 34. Dr said swelling caused (he thinks) by the Dex. Has anyone else had this. Went for X-ray on neck as dr thought vertebrae may be pinching on a nerve. They seemed more concerned by his temperature. Once it rose to 35 they let us go!! To ring them if anything else occurs or temp drops again. Anyone know why?

Thank Jean x

Ps all bloods were ok

[tomParticipant]

Hi Jean and Frank
The CTD was not good for me it forced me on to the sick 🙁
Yes I had swollen feet and legs, Kids used to laugh when I showed them the ring around my sock top lol, Elaine got me new socks with no elastic in them real loos at top and that helped :-), the feet/legs will go down but my feet and fingers aint too good lol I still have "Spongy Feet and cold Fingers" but hey am drug free and for that am Happy 🙂

You have to keep warm when you are ill and Frank is as we all know, I since I had MM found the Cold way too cold and I have always got a snuggle blanket at side of my chair and i use it even when the heating is on Lol (like last nite 🙂

Pleased Bloods were spot on.

Lots of Love and Hugs, keep going its a working 🙂

Tom "Onwards and Upwards" xxxx

[eveParticipant]

Hi Jean

Sorry can not help with the low temperature, but Slim had swollen feet,as Tom said you can get socks with loose tops it helps,I use to use Coco Butter Milk on Slims feet,a massage ever night use to help,got the circulation going,swollen feet are painful.Needs to get those feet up high a pillow under his lower legs of a night,but make sure his heels are not on pillow,.

I am not doing very well with our Scrabble Jean,I have 6 games on the go,and for some reason,everyone of them,is turning out bad,think my % marks for winning are going to plummet,your game is interesting as some of the words you are useing I have never heard. Love Eve

[jmsmythParticipant]

Thanks for the info Eve. I have coco butter so will give that a try. As far as the scrabble – I am playing with an old school friend who lives in Australia, and that is where I get some of the weird words. One game was so unusual I took a photo of it and sent it to my son in Kent. He also had never heard of some of the words. I used to look the weird ones up in the dictionary but have given up now. I have nothing vowels left in our game (I think) so I take chances and try my luck
.

My best to Slim
Take care love jean

[Pickle2024Participant]

Hi Jean,

Dad has been off CTD 3 weeks this Tuesday and was terrible the last couple of months tbh. His feet were really swollen and he felt terrible, unable to walk as he was so weak. We put it down to the steroids but ive just registered on here for the Myeloma Matters quarterly newsletter and theres a section in there on peripheral neuropathy and lots of his symptoms seem to come under that, who knows!! We keep saying it could be this it could be that but I think its the overall concoction of drugs going in. He completed 6 months and they wanted him to continue for another 2 as he was still responding, but his body couldnt take anymore, He had a chest infection and could hardly get out of the chair! We were a bit optomistic that as soon as the drugs stopped he could be back to normal but 3 weeks on and hes still quite weak and had various different things going on but is noticing an improvememt in his general health each day. Fingers crossed it continues.

I hope Frank feels better soon xx

[jmsmythParticipant]

Hi Nicola

Thanks for that and I will have a look. I have been massaging his feet with cocoa butter. He is in good enough form today but feet and legs are badly swollen. Frank finishes his 6 cycles of CDT in three weeks and if they suggest more treatment – don't know what he will say.

Hope your dad improvement increases every day.
Best wishes to you and your dad
Love Jean xx

[Pickle2024Participant]

Hi jean,

I forgot to mention that the consultant did prescribe dad with some water tables when they were at their worst, maybe that will help frank? They did go down but he only had a short course. His feet also look quite dry and cracked even though we keep slapping on the cream, saying that towards the end of his treatment his toes were too sore to touch due to the neuropathy. They are gradually improving too but only slowly.

Nicola xx

[jillsParticipant]

Hi Jean,

My Mum has had swollen legs a couple of times during the treatments she has had for MM – the latest was during the Velcade treatments – they swelled up during the first cycle. She has had every type of scan going – blood flow, CT scan etc, but nothing adverse was detected so the recommended treatment was just to put her legs up – as high as possible. She also got some compression stockings from the doctor which do help. Since she finished the treatment in August her legs have gradually got better so I think it is to do with the steroids which she had alongside the velcade. Luckily she doesn't seem to have any neuropathy.
I wouldn't have been keen for her to have water tablets as it is difficult enough to get her to drink enough water!
Thanks for the post I must say I was relieved to read that others had this problem as the docs seemed to find it a bit of a mystery!
Glad Frank is feeling a bit better – keep using the cream as it does help to keep the skin moisturised.
Love, Jillx

[jmsmythParticipant]

Thanks for that Jill. When I saw his legs I nearly had a fit. An elephant had nothing on him!! I remembered reading some time ago on the forum that someone had had swollen feet and legs during treatment. I hope your mum is doing well
Love Jea x

[DaiCroParticipant]

Hi Jean,

Keep an eye on Frank's legs, it could be down to several things and a DVT (Deep Vein Thrombosis) is one not mentioned in your posts.:-0

Last year (the summer of 2011) I had a badly swollen leg and wondered if it could possibly be a DVT. (I reported all on here and in a nutshell it turned out to be a DVT after several weeks of complaining and an eventual Doppler Ultrasound Scan on my leg.) :-/

I was down for a scan as an emergency measure but the Doctor had to be at another hospital in the afternoon and dropped me (I was strapped on to the back of one of those electric cars at the Daycase Unit waiting to go for the scan when it was called off. It took 3 weeks before the scan eventually proved the DVT… 3 weeks of care and observation with several worried nurses at the Unit giving all sorts of advice.:-P

My main symptom was that my left leg looked like an Elephant's leg, badly swollen and thrice the size of the right. I was treated with self-administered, daily Clexane injections (150ml) and eventually it returned to normal.:-(

[i][b]As of 5 weeks ago my right leg developed the same symptoms with the same result… a matching DVT[/i]. [/b]

I had followed the Clexane (blood thinner) 150ml treatment for 6 months (supposedly the maximum length of treatment) for the left leg before switching to a 40ml maintenance dose last January and had continued that treatment until this latest development. I am now back up to 150ml and will stay on this dose until mid-March and we will take it from there.:-P

If I was you I would ask about the possibility of a blood clot (DVT) and a Doppler Ultrasound Scan to confirm or deny… to not do so, given the symptoms, could have disastrous outcomes if it does turn out to be a DVT… a pulmonary embolism (clot travelling through the heart to the lungs) not the least of them.:-/

I had a Pulmonary Embolism (following extensive radiotherapy) just after my initial diagnosis of Secondary Bone Cancer, Primary Unknown 4 years ago.:-|

It was quite late… the pub had been closed for an our or so and I was doing some recording when I suddenly felt very breathless and lightheaded… It hit me hard and I collapsed unconscious on the floor while calling Janet's name on the way to our bedroom. My Ward Consultant at the time reckoned that my shouting Janet's name and trying to stay conscious could possibly have saved my life… all I know is that I collapsed 5 feet from the bedroom door where Janet found me after hearing me go down.8-)

I awoke to an assembly of Janet, my step-daughter and her partner (who lived and worked with us) and 2 para-medics… I eventually recovered enough to walk down from our living quarters to the upper restaurant of our pub (lots of narrow winding stairways) and onto a gurney. I didn't develop a DVT that time… I simply jumped straight to a Pulmonary Embolism due to a number of floating clots left after the radiotherapy treatment on my tumour and the crushed vertebrae.:-0

Anyway… that's my story… don't even allow the possibility of it being similar to Frank's… ask the questions and get him scanned. Better safe than sorry.:-S

Dai.

[jmsmythParticipant]

Hello,Dai, thank you for the information, you went through the wars. . Frank has been on Clexane for the past 6 months. He is still,sleeping do not sure how he is now but yesterday the swelling in both legs had come down a bit. When we went to the Unit on Friday they seemed more interested in his low temperature. Saying that they did give him a thorough examination and were going to send him for a heart echo and lung tests but he had those about 2 weeks ago and everything was fine. They have brought his appointment forward and we are seeing he this Thursday. I will see how he is today and I will keep in mind everything that you have said. Thank you very much

On a lighter note I am glad that you got to walk your daughter down the isle and look forward to seeing some photos. I have been glued to the TV as our son took his wife to New York for her 30 th birthday and guess where -lower Manhattan. Was talking to him last night and he said it wasn't that bad and then on face book this morning he said that a building just down from their hotel collapsed. Have to wait a couple of hours till I will be able to ring him.

Thanks again Dai and I will keep a close watch on him. Hope you and Janet are in good form

Take care
Love Jean x

[WinkParticipant]

Hi i see swollen feet is common as i had this in a bad way but now seems to be going slowlely and this was during my medication with steroid and my virtribrae issues,but i was prescribed water tablets that did not seem effective and there was not much help coming from my GP either,but gradually they seems to be getting better.
I notice some are recomending coco butter so i may try this for my legs as they are swollen at the knees.
(Wink)

[jmsmythParticipant]

Swollen fete have disappeared!!!!! Back to normal. I think it was the d**m steroids that was the cause. But just thankful l that they are both normal. Thanks all for advice and tips

Love jean x

[Pickle2024Participant]

Hi jean,

Dads been off treatment for just over 3 weeks now and felt terrible the first few weeks but seems to have started to feel better the last couple of days. His feet and legs are nearly back to normal size and he said tonight that he def feels like his legs are a bit stronger. It's still early days but he's had 2 days now, I just hope this is the turning point!! I know frank has suffered terribly with the side effects the same as dad and you think things are never going to get better. Your nearly there now with the ctd so hang in there and I'm sure it will start to get better soon

Nicola xx

[jmsmythParticipant]

Thanks Nicola and I'm glad to hear that your dads legs are back to normal. All these horrible side effects are such a worry. No sooner get over one and another rears it's ugly head We are off to see the consultant tomorrow. I really hope that this is the turning point for your dad and he goes from strength to strength

Best wishes to your dad
Love Jean x

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