[foxy555Participant]

Hello all

Question:- Did any of you on CDT suffer with swollen ankles and numb toes?

Pete has had the problem since July. Consultant dismissed it at first, but at the last meeting suggested it might be related to his heart, despite 2 ECG's and an Angiagram coming back clear!!!! Waiting for an appointment for a heart scan, but still not arrived, 2 weeks on!! I am obviously concerned because Pete's SCT is scheduled for November/December and so any further complications will affect this.

Any advice or comments would be so welcome!!!

Thanks

Ann
x

[jmsmythParticipant]

Hi Ann

Sorry Pete having problem. Frank is on cycle 5 of CDT. He has had sligntly (!!!) numb fingers the whole way through treatment. Consultant doesn't seem to be concerned. He had to go two weeks for heart tests and last week for lung tests. This we are toldi s to ensure heart and lungs ok for SCT.

Maybe someone else will have more information for you

Take care
Jean x

[foxy555Participant]

Hi Jean

Oh, so does sound as though it could possibly be associated with the medication, fingers and toes crossed!!!!! I am praying that is the case. All his other tests ie heart, lungs, kidneys etc have come back clear!!!

Thanks Jean for replying, it really does help.

Ann
x

[jmsmythParticipant]

Hi Ann. It could be medication as everyone seems to have different side affects but every time we go to see consultant I always bring it up as its always better to be safe than sorry. I'm sure consultant is sick of hearing the same thing but I just want to be reassured.

Frank is scheduled for SCT December/January bur there is only one hospital in Belfast that does SCT and they only have 5 units in use so there is a waiting list and leukaemia patients go first,keeping fingers crossed. Nearly forget what normal life is like

Take care
Jean x

[VickiParticipant]

Hi ann and Jean,

Ann, re peters numb extremities and the swollen ankles. Can't help on the swollen ankles but i am sure I have read about a lot of people mentioning slight numbness……is that the peripheral neuropathy thing?, if so I think there is a leaflet on the site here somewhere. I think it is quite common but I did not hear Colin mention that.

Hope all goes well for you and Peter. And Jean hope franks treatment is going well and you guys can get on the sct route soon. There is such pressure on the nhs isn't there. I heard on the news it's going to getbworse! How cheerful is that! 🙁

Take care

Vicki and Colin x

[eveParticipant]

Hi Ann
swollen ankles and numbness are some of the symptoms,both will go with time.
You can buy socks that have more give at the top to make it easier to get them on,he needs to keep his feet elevated when sitting,i use to use coco butter milk from boots and massage Slims feet it does help with the feet being swollen.Helps circulation .
Eve

[tomParticipant]

Hi Ann

Re swollen ankles yep I got those, numb toes well let me tell you I have in the past the most sensative toes ever, that bad i could not cut my onwn toe nails so my young bride used to cut them and had to sit on my legs so i didn't pull away Lol, but during CTD toes went numbe (still are) to me it feels like my socks have slipped down and rolled under my toes:-) even with no socks on he he, Like the others My Dr wasn't too worried.

Good Luck to you all

Love Tom "Onwards and Upwards" xxx

[BADGERParticipant]

hello Ann

I had swollen ankles and got really numb toes while havig CDT I think it goes with the territory toes are better now but still a bit numb on the two outer toes on each foot hope all goes well for his SCT
love Jo

[Pickle2024Participant]

Hello Ann,

Dad is on his 6th cycle of CTD and has really painful fingers and toes which I think is related to the Thalidomide. His ankles and feet were also swollen but since being given water tablets are so much better. He did have a chest xray but that was all clear but reading the side effects of the steroids I think they may play a part in that too. Dad was told to report all side effects so its always worth checking with the consultant. Hope ur feeling better soon x

[foxy555Participant]

Hi all

Really grateful for all your comments, has certainly shed some light on the condition, so Pete does feel somewhat happier. Bit disappointed however that as well as the heart scan (appointment still not through, but he will chase it tomorrow), they have also said that he will have a 7th month on CDT and then hopefully!! – SCT.

Take care everyone

Best wishes

Ann and Pete

xx

[Pickle2024Participant]

Hi Ann and Pete,

They have indicated to dad they that he may need another 2 months on CTD which hes really upset about. The steroids play havoc with him, really cross, upset, angry and depressed….he said he cant do anymore. We have an appointment with the consultant next week so we'll find out a bit more then. I think he needs to go with the professionals advice, they know what they are doing. As much as we hate seeing him go through all this, we also want him better and for as long as possible! Dad isnt having SCT so we have to make sure his levela are as low as possible. It does help hearing that other people are experiencing the same symptoms, makes it a bit more "normal" I guess. Hope all goes well for you both, not long to go now

Nicola xx

[VickiParticipant]

Hi ann and Peter

How are things going? Have not heard from you for a while?

Vicki and Colin x

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