Why am I always cold?
I have recently finished 6 Docetaxel infusions and have been on Casodex and 3 monthly Eligard shots since January. Before my APC diagnosis, my internal thermostat always ran hot, but now I seems to always be cold. My wife would be rugged up with multiple layers and I would be happy in a T-shirt, but not now. My instincts tell me its probably to do with the lack of testosterone. I was wondering if the brains trust could help me out with some pearls of wisdom, cheers 😎 DD.
Hey there Doseydoe,
I used to run hot , too, before ADT. I had major hot flashes/flushes the first 4-6 months running hot and cold with night sweats. That went away over time but, since then (3 years ago), I run cold, too, almost always having a sweater or hoody to take on and off. 76 degrees indoors used to be hot for me and now it’s downright cool This might be your new ADT normal! Saves money on air-conditioning! Doug
I had the same problem until I got off Lupron and Megace. Now I only have one more blanket on my side of the bed. Like temp. set at 69 degrees in winter and spend time down stairs in summer.
ADT can mess up your thermostat. Also check your Thyroid panel to rule out hypothyroidism.
ADT f***s up the thermoregulation system in the brain - your perception is sometimes too hot (hot flashes), sometimes too cold (shivering). There are some remedies that can correct it:
• aural acupuncture
• Progesterone patches (w/tamoxifen)
• Estrogen patches (w/tamoxifen)
• Venlafaxine
I mention adding 10 mg/day tamoxifen with transdermal progesterone or estrogen to prevent gynecomastia. If that doesn't bother you, it is optional. Transdermal patches or creams can be made up cheaply by compounding pharmacies with a prescription from your doctor.
Thanks TA, I'll investigate tamoxifen, cheers 😎 DD.
Hey Dosy! I’ve yet to do chemo. Thanks think that your system is assaulted . I hope you avoid harsh side effects. My thermostat is in a permanently altered state . I never got flash to pee at night then after the he chilled. Like a cold flash . I lost weight with not much fat reserve on me . Maybe part of my cools sweets. I speak of my self as Goldilocks I need the temps “ just right” . I can’t do high heat anymore either. I’m sure this is from treatments . You will adjust .. but this is the new US. Good luck 🍀
Thanks Wimpy, it's a whole new world for us since we joined the APC club. Maybe we can find a release clause, cheers 😎 DD.
Thanks Nalakrats, sounds like I need a thyroid function test, cheers 😎 DD.
Interesting subject...room temperature is one of the few remaining points of contention between my husband and me. My husband’s internal thermostat has significantly changed since he started ADT; he’s cold all the time. Meanwhile, I’m hot all the time, unless the air conditioning is blasting. Husband walks around the house wearing not one, but two jackets most days, saying it’s freezing. We compromise on 65-68 degrees during the day, and 62 at night (I guess that works mostly in my favor). Seems to be one of the more innocuous side effects from hormone therapy.
Hi Dett, sounds just like our house, it's like the roles are reversed.
While I have this opportunity, here's a big shout out to you as you are doing champion job sharing the APC journey with your man. It's not easy and I just wanted to say a Big thank-you to you and all the significant others out there who care for us, cheers 👍👍👍 DD.
When you have your thyroid function test performed get your treating Doctor to do a full blood count and a ferritin level. Have a look at your Haemoglobin levels and your saturated iron.
OK, thanks Aussie.
Lack of testosterone does slow down metabolism so less body fat or food calories are burned to keep you warm. If you eat more to warm up, little is burned to warm you because the body prefers to store excess calories as fat to insulate you, so you get too fat.
So buy another blanket, and keep food intake low.
The chemo has bad effect on feet and hands. To minimize these side effects, I cycle 200km a week and I am 72, and sure I get a bit cold on 10C days in our winter on my bike but after awhile I warm up, and I wear just the right amount of clothes to keep warm enough.
There are a pile of ppl who don't do much at all and have no ADT and have full amount of testosterone and feel cold in winter, and spend thousands of $$$ on central heating of their houses. I don't. Despite many recent nights of -5C outside, and a not very well insulated house, I keep quite warm enough with 2 thick blankets, and a 70W electric blanket set on about 20W. I don't keep as warm as I did at 30, when any lady who shared my bed found herself beside a real good warmer, in more ways then one. Those days are long gone, and of course all women moan if temperature goes below 23C, or above 27C. But they mostly are not very fit or hardy, and have low levels of fitness, hence the expense on heating, and also on cooling when daytime temps have been over 40C for a few days, with no cooling breezes.
Patrick Turner.
Thanks Patrick. I hope to have my ureter stent out this week and I am looking forward to exercising again to warm up. One problem with this stent is even a short stroll causes the stent to rub on the inside of my bladder and I end up peeing blood. Cheers brother, 😎DD.
What a coincidence: I'm hoping to have my ureter stent out on the 17th. Or should I say, it's definitely coming out, and hoping a new one isn't put in to replace it. It sucks. My pee looks like a burgundy whine if walk about 4 miles. Shorter distances aren't too bad. It hurts when I move too much, it hurts when I sit wrong, and it sometimes makes my kidney hurt when I pee. Still, a vast improvement over hydronephrosis. Thanks for allowing me to commiserate by venting about me me me 
At the time of my Pca diagnosis in 2009, I had a constricted ureter which threatened a kidney. My Uro thought it could be Pca spread, so he cancelled the booked robotic RP and did an open RP instead, so he could look around inside be better. Turned out PG could not be removed because too much Pca surrounded the PG. But he could find no spread to anywhere, and took out seminal vesicles which can be a pathway to Pca to spread. Other biopsy samples were taken and all were negative in areas outside PG. No Pca was found in blocked ureter. I was given a temporary stent with curly ends to make it stay put between kidney and bladder.
These plastic stents last 6 months only due to action of urine on plastic, and from 2010 I had 3 such stents, and there was some pain after each new stent. I found I could not cycle far or fast with these stents at first, but at end of 6 months I could easily cycle 90km without bleeding or any pain.
The curly ends of stent rubs around inside cavity at kidney and inside bladder, but scar tissue forms and bleeding stops after sometime. Its not life threatening.
Doc decided to install a permanent metalized plastic stent across the 40mm of constriction, so that was yet another op I had which went OK. But about 3 weeks later, I found myself incontinent one day, and then I pissed out the stent into toilet. Stent slid down ureter into bladder, found its way into urethra opening, blocked both sphincters on its way to escaping out my Rodger.
I retrieved the stent, and took it to GP who sent me to Hospital where they were very amazed this had happened when I removed the stent from my wallet and waved it around and said "Doc, look what I pissed out". I spent 2 days under observation at hospital and had a scan to show if ureter was working, and it seemed it had repaired itself and begun to work again and I've not had any recurrence of the problem.
But for awhile, I got to know about Men's Truation, bleeding from Rodger.
I also bled from arse due to side effects of EBRT at 18 months after I had the EBRT.
I don't bleed anywhere now, and so far so good, but Psa is now about 11 and rising fast so I'll have more Lu177, or whatever docs decide after seeing my 7th PsMa scan tomorrow.
Keep well, be happy, don't worry,
Patrick Turner.
OMG Patrick, you have been to hell and back. My hat off to you brother, certainly puts my situation into perspective. Thanks for sharing, cheers 😎DD.
During the many times I found myself in hospitals since 2009, It was always a humbling experience because I saw before me the large number pf older and younger ppl with much bigger health problems than mine, and some might have got well, and some would have died, so hospitals are a fabulous place to learn about empathy and humility.
Many who never suffer a challenging illness can't seem to realize what its like to never know if you will survive much longer.
Not many of us are born with perfect DNA than allows 110 years of life. A few make it that long, and many are dead at 50.
I had an excellent cycle ride today, 54km at av speed 23kph, and there were no times when motorists nearly flattened me, and I took no risks so all the motorists and myself were well behaved at all times. No other cyclists overtook me. During the lock down for C19 many young men and a few women were laid off from their jobs and took to the roads on their bikes, and when one struggled to overtake me I might say "What took you so long?" which didn't cheer him up, because most have no sense of humour and expect to zip past an Old Bar Stud like myself with ease.
They should be faster, because I'm often twice their age. But its remarkable how fast some of the yungies are, and gallop past me to make me feel like an Ancient Horse,
but how good will they be after another 30 years of life has passed? I'll be dead, so I can't answer the question.
There is some interesting research going on at the Garvin Institute in Australia about how and why cancer mutates to avoid the effect of all drugs used to either slow cancer growth ( ADT ) or kill it, ( chemo or nuclide or RT or immune therapy )
They have identified a cellular molecule which is highly involved in making cancer defeat the treatments, and a search for way to stop this molecule from working, and so there is some great work being done here and I can have some hope I might live
long enough for new research to lead to new therapy.
I was chuffed when in 2015, Lu177 became available in Australia, at first in 2015 and in Perth, 5,000 km away from Canberra where I live, but then in 2016 the company
Theranostics Australia opened a clinic in Sydney, and by the time I needed some Lu177 after chemo failed, there was Lu177 only 300km away, a trip on train, subsidized by NSW state Govt. Low and behold the Lu177 was more easily available in Oz than in the USA. But it was expensive, and not covered by our Medicare and I spent about usd $28,000 for 4 infusions. I may need more Lu177 soon, I have 7th PsMa scan tomorrow, and a week later I see onco and maybe by then he's talked to docs at Theranostics Australia and he refer me to them for more Lu177.
It has far less side effects than chemo, and it actually seemed to kill a lot of Pca, not just tickle the cancer under its chin.
I never know if new breakthroughs in Pca treatment will happen in time for me, but the PsMa scans and LU177 arrived when I sure could use the new treatment.
Try to look on the bright side, and seek best docs, be positive.
Patrick Turner.
Thanks Patrick, this demon PC is a whiley character. Keep up the fight brother, 😎DD.
When they finally find a way to manage all this pca crap we will all say, "What took you so long?"
Good question, but the medical industry does not mind the status quo where patients are bled dry of all their money for treatments that don't work to cure. But doctors get sick too, and you'd think things might change faster, but its a slow process, and throwing millions at research does not seem to speed progress up.
Patrick Turner.
Thanks for sharing your stent story! I've also heard from dockam that he ran marathons with dual stents. I had blood in urine after exercise prior to the stent due to my NEPCa, and generally have less blood with the stent
The stent side effects still worry me at a time when chemo is killing my ability to do lots of exercise. So I've found out how much I can do without severe consequences and stick to that for now. The top three side effects of pain, urgency, and blood also happen to be the symptoms I had prior to my latest diagnosis. I have to be well rested before being able to say "it's just the stent" and put my mind at some ease.
I've just started my last chemo, and will get a new scan shortly. If I do end up with a replacement stent I'll definitely push through and ramp up my mileage. The stories I've read here like yours are proof that it's possible, so thanks again!
Chemo attacks all body cells which rapidly divide and create new cells. So there are effects on all the most rapid cell replacement in mouth etc, and maybe on any other places which are trying to recover from surgery. Chemo seems to work on some rapid growth cancers but maybe not so well on Pca which is slow growing. The chemo action is only for a part of each 3 weeks between chemo shots.
When I had 5 shots of chemo, I drove to get first but cycled to get the last 4, and I tried to cycle every day of my time on chemo, going for low km for first 5 days after each chemo, but then up to 40km a day in weeks before next dose.
Patrick Turner. I recall keeping busy in workshop during my chemo time.
Patrick Turner.
My current cancer is neuroendocrine which seems to be very fast growing and a scan after two cycles showed some impressive results at that time. Hopefully the progress has continued but we'll find out in a couple of weeks. My wife drives me to chemo but has been parking in the cool shade at the back of the lot giving me a longer distance to walk. I've also been walking with little bits of running when I get home. Very happy to be much more active at the start of this last cycle!
It looks like you just finished chemo recently. I'm near the end of carboplatinum/etoposide myself, and have never felt so cold. I sit outside in the sun in a sweatshirt and a winter hat on an 80 degree day to warm up. I got an extra week before my last cycle and have felt considerably more comfortable in the last couple days.
I don't doubt ADT can mess up temperature perception but you might want to get a little further away from your chemo to figure out how much is due to which treatment.
Hi Tom, I hope you're right about the ADT. I'm also glad my chemo is over as I'm slowly getting my mojo back. Cheers brother, 😎DD.
From what little I know, Carboplatin is awful stuff with more difficult side effects than Docetaxel, or Cabazataxel. So despite the awful cooling effect even in hot weather, what effect has Carboplatin had on your Pca?
Patrick Turner.
Hi many of us have high blood pressure along with or due to our pc and meds.
Mine can be very high such as 155/95 or higher untreated.
So I take BP meds (Losartan or Valsartan) which controls it.
But when I exercise (cycling) for 2 plus hours. That in itself will lower my BP to 112/70 without meds.
Or If I take the BP before cycling my BP can dip to 90/60 and I'm cold allover and especially in the hands and feet. And can get dizzy when bending down to tie a shoe etc.
So I've learned to take my BP after exercising and I avoid those issues.
So days I exercise I need to delay my BP meds. When I don't exercise timing isn't an issue.
Note I usually exercise early morning and used to take the BP upon rising.
Excellent advice—Nalakrats gave me this advice and I asked my dr for this test and was able to use the results to better balance my thyroid. Kudos Nalakrats
I have this problem mainly in the winter even though it really doesn't get that cold where I live.
As we know, ADT screws up your temperature regulation.
What happens with me is I get cold for around 10 minutes and so I try to get warm. Once I finally do get warm it shoots right past being comfortable and into a hot flash. That lasts for a minute and then start over. My situation goes round and round.
One thing I've read about this is when you are cold, try not to overdo warmimg yourself up which leads to a hot flash.
Hi Gregg, I can relate to that, the up and down in body temperature. A very strange occurrence but a new kinda normal. I have thought of moving somewhere warmer, cheers 😎DD.
Oddly enough, I find hot flashes easier to deal with in the summer because there is only the hot part and no cold part.
I've been on Naked and Afraid twice and was never cold.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 06/08/2020 6:49 PM DST
You probably had a fever. Were you wearing a face mask? It should probably be The Almost Naked and Really Really Afraid.
8 cycles Taxotere left me freezing that winter, with a utility bill to prove it. Wrapped in blankets just to watch Naked and Afraid on TV. The next winter was much better; and this last winter I could have watched TV naked. The neighbors are afraid of me.
Always learning
Am I weak, Or am I a sneak?
Am I nuts? Hoping to find a cure....
