So cold all the time

Hi Jane, during my first 14 years my temperature was very erratic going from very hot to very cold all times of the year........ them when I started my main treatment is was worse......... now all detailed down.

What types of treatments are you having at the moment? What are your team saying what the future treatment plans are?

((hugs))

Hi there, well not going very well at mo, i'm not having any treatment my consultant suggested me having a break from chemo for 4 months, i have to go back in march but i can make a appointment before then if i'm unwell. The reason for this is because i suffer quite bad with side effects of the chemo and there's nothing else they have at mo. They have suggested trying again Methrotraxate when i go back but i'm still thinking about it. I've had a few infections lately and i always have flu like symptons. Its so hard dealing with the cold all the time i just want to stay in bed because of it. I've also been told recently i have lymphodema and my legs hurt alot, got to wear surgical stockings but they rub my skin and make it sore. Nothing works!  Jane.

Hi, Jane

Different cancer but 3b. I definitely felt very cold after the end of my chemo for a long while. Nothing compared with the highlander above at 14 years.... Just a few months, but I was piling on the layers as you describe. The only thing which helped was moving. I would jump up and down on the spot, go up and down the stairs repeatedly. Obviously, you can't do that at night... I used a hot water bottle.

I'm now in a period of hot flushes, but my numb feet (from chemo) still get cold, but then again, I like being barefoot, so that doesn't help.

Hope things get better for you.

Hugs from me too.

I am so sorry to hear the challenges you are having.

Have your team....Dermatologist?......... put your case out for review by other experts in this area.

Once my condition developed to be uncontrollable my team sent my case out to various centres of excellence including to Sean Whittaker at Guy’s and St Thomas’ who helped agree a way forward.

I'm at guy's and St Thomas under a Dr Wain in Derma. They haven't said anything else.

Thanks for your reply i deffo have a water bottle always! Lol, thanks again for your reply. Jane

When was the last time you had any Phototherapy?......have they tried you on the Immunotherapy Bexarotene?

:-) I'm at Guy's too !!