Hello ….I am new to the Forum. I have been on Watch and wait since diagnosis in 2016. Does anyone else have problems with feet and hands becoming freezing cold and turning purple like there is no blood supply and just as suddenly reverting to normal. I can’t find anything about this so don’t know if it’s a symptom or just coincidence?
Hi @Bronte. I have Follicular Lymphoma and have been on watch and wait since 2017 following radiotherapy.,I haven’t experienced that as yet. What has your medical team said about it? How are you keeping at the moment? It’s been a challenging couple of years hasn’t it! X
Hello @Nichola75 I have not needed treatment so far so I am lucky with that. The medical team just dismissed it but I did read somewhere that Reynards was a possible side effect so i just wondered if anyone else had experienced it. I just get tired but that is normal I suppose…
Hi Bronte. I am fairly new to the Forum too. I was diagnosed with Intestinal Follicular Lymphoma in 2019. I’m stage 1 and on watch and wait. I haven’t noticed particularly cold hands or feet myself; well apart from the probably effects of getting older (although I’m only 45).
Personally I find this time very tricky to know whether complaints I have are Lymphoma related or not, so I’m not surprised by your question.
Hi, have been on Hydroxycarbamide for 6 years now plus other meds. I suffer from Reynolds Syndrome. Fingers often white then turn black when in the bath then red then normal. I understand it is associated with either the meds of JAK2POSITIVE. I guess it could be a lot worse.
Hi @Bronte welcome to our forum and I have Chronic lymphocytic leukaemia (CLL) and I am on watch and wait and funnily enough I was just thinking how I was wearing 3 pairs of socks and legwarmers with the heating on and my feet were still cold. Also that my hands were really cold as well, gloves (meaning more than one pair) hardly help and when I get home after going for my daily walk my fingers won’t work and open the front door.
My internal thermostat is completely up the creek as well, cold when I should be hot and hot when I should be cold often. I have been like it since diagnosis.
As you can see we are all here for each other and ready to share our experiences, also if you would like to speak to someone The Blood Cancer UK support line is there for you.
I look forward to hearing more from you.
I’m always like this @Stuart. That’s one of the things I find the hardest. Although my consultant always says I’ll know when it returns
Be interested to see what others say
Hello Bronte ,I read your post with interest re the cold hands esp the discolouration.I understand it can be a symptoms of Raynauds disease .I looked on the NHS website for Raynauds and there was a link to a charity which gives little video clips on keeping hands ,feet warm .I also looked out some gloves I’d got for osteoarthritis (which I’d forgotten I had ,oops )mainly as doing exercise helped with pain ,anyhow to get to the point.You can order gloves for arthritis as they advertise it helps with Raynauds as they fit like a skin ,I tried mine on and my hands soon got toasty,so I though that might help and others too .There was a pair of slippers with room for a hot pad !!I’m definitely going to wear my gloves now on my walks to fend off the icy fingers and see if it helps.Raynauds is usually connected with rheumatoid arthritis .I hope you get some answers from your medical team next time.Hope that helps. Bannanacake.
Thanks @Bannanacake those gloves sound brilliant, a great ‘handy’ hint.
They sound like a great idea!
That’s really interesting Erica. When things are just dismissed you feel like you are being silly or whinging but it really is quite a problem and I can’t get a medic to listen. I suppose it’s not really serious enough for it to be a worry, it does bother me but it doesn’t make me ill. Yo take care and I hope you keep warm!
I know exactly what you mean. It’s very confusing. I didn’t think I could use the forum for a long time because I haven’t had treatment either but then I began to realise there were lots of people like us. Hope you got your third dose ok…what a mess that all was….
Thank you @Bannanacake I shall certainly search those things out. I didn’t realise such things existed sounds like that they might help. i have a couple of people with autoimmune issues in the family so that might be something to think about too. Some good ideas, thank you. I hope you are doing ok…keep well…
@Belinda I haven’t had treatment so I can’t blame it on anything like that. It was just something that. started happening after my diagnosis. Its’s a bit disconcerting when your hands and feet go blue and white and sometimes loose feeling then turn red and go back to normal. It’s weird.
@Nichola75 It certainly has been difficult. I have been told not to teach my workshops or go back to most of the groups I belong to. My daughter is back at work travelling round the country and meeting her various teams at work and socially and she has a very wide circle of friends. At the moment i have been advised not to have her stay. She’s fine with it but I do find it a bit odd. She and her partner stay locally and we meet outside for walks and things but it is a strange way to carry on! I miss being able to give her a big hug but hopefully that will happen soon!
Hugs are one thing that I missed the most. It must be tough not having that contact. So many of us are on active monitoring so I’m glad you decided to join us. What are your plans for the festive period?
Hi @Bronte this forum sure is for every single one of us and our families and friends.
We live with those rollercoaster of symptoms, fears, thoughts, emotions and practicalities etc.
Look after yourself
Thank you@bronte ,the other thought I had was to take a photo on your phone to show the discolouration to your GP.Its the new way to go since covid and its a useful tool .I’m glad the info was useful it helped me too, I’ve just ordered a new pair of gloves with fingers in them ,I wore the fingerless ones with gloves on top yesterday and it helped. I looked on the SRUK website, lots of help ,advise to keep warm .I’ve had my 3 month b test this morning ,thank goodness that’s done with so thanks for your good wishes, and please take care yourself too.
Just me and my husband but we plan to enjoy the time…how about you?