Anyone COLD after their SCT?

[Lori Patrick]

Hey all. Since my SCT I have been so cold. Has anyone else had this problem? I used to keep my home at 68 degrees and now keep it at 76 degrees and I wear turtle necks, flannel shirts and heavy sweatshirts AND sit with a blanket on when resting! One of my clinic nurses says SCT patients are usually cold for some reason after the transplant. I thought I'd ask the experts here about it.

Also, how covered up to we have to be in the sun? We have a speed boat that we take on the lake 3-4 times per summer and I ride with my husband on a motorcycle a lot - ride west on vacations on it, etc. I purchased a straw hat and a cap with a large bill to keep sun off of my face. Will wearing a high spf work on the boat or will I have to wear long sleeve shirts and pants on the boat this summer?? Thanks for your input!

Lori

[Neil Cuadra]

Lori,

Did you lose your hair from the chemo during your mini-transplant? If so, did it all grow back? Losing some of that "insulation" is one reason patients can be cold.

My wife has taken reasonable precautions about sun exposure since her transplant but she doesn't avoid being outdoors. She doesn't wear a hat in the sun since she's got a lot of fluffy hair covering her scalp, but she puts suntan lotion on her arms and legs and face if we're going to be outdoors for many hours. Her transplant included radiation treatments so she doesn't want to add lots more radiation to what she's already had. But it's a good idea for everyone to protect their skin.

Even a high SPF lotion can evaporate in the wind or wash off or wear off, especially on a speedboat, but you can reapply it periodically. I doubt that your doctor would tell you to curtail your outdoor activities, but it's worth asking him/her how concerned you need to about limiting sun exposure. If you do, please tell us what you learn.

[mausmish]

Lori, I was always hot before and now I am cold a lot of the time. The good part is that I no longer get hot flashes. Karen

[Lori Patrick]

Neil, Yes I lost my hair. I wear a winter hat on my head, major warm winter clothing now whereas, like Maumish, I use to be hot a lot and now I am the opposite! I suspect some of it is the fact that the chemo kicked me directly into menapause too, huh!

[squirrellypoo]

Weird, I was the opposite! I was the very definition of a freezing cold female (cold hands, warm heart, etc!) before I got ill, but ever since my counts came back after my transplant, I've been warm. My husband has commented on how much warmer I am to the touch than before - we joke that it's because I have "man's blood" now, but I really think its just improved circulation.

When my hair was out, I found it really helpful to just have a few little close-fitting caps made from stretchy material to wear around home and to sleep in (if you know anyone who sews, I posted a very easy tutorial on my site for these caps!). I found that just keeping a draft off my head kept me warmer!

[Deb J.]

It's easy to determine which patients are transplant patients in a waiting room----they're the ones with sweaters and long pants on in the summer. Until your blood counts are normal, you'll probably feel colder than usual. It's caused by low red counts, as far as I understand.

As far as sun exposure, the idea is to not cause cellular changes and getting a suntan is exactly that. A good rule of thumb is to prepare yourself as you would an infant. You aren't a child, but your immune system is, so take good care. Have to admit I'm not comfortable with the straw hat, one made of heavier cloth or with built in spf protection would be a better option. (they're kind of cool, like an Aussie bush hat and have panels you can use to protect the back of your neck. Now, I may have had the fear of sun instilled in me by husband's doctor, but I won't let him sit on the beach without proper clothing, umbrella and of course lots of sunscreen. Anything that can cause cellular changes can open the door to GVHD. Don't forget to protect your hands too!