Answer Only if you are on ADT (Hormon... - Advanced Prostate...
Answer Only if you are on ADT (Hormone Therapy): During the past 7 days, how often have you felt unusually cold for at least one hour a day?
Just a quick survey to see how prevalent this side effect is in our community. Please feel encouraged to write about your experience in the reply section. This survey is only about basic ADT (e.g. Lupron, Casodex, Firmagon, etc)
Please select one:
I definitely have less tolerance of 'cold'. Indoors or out.
I've been on Prostap (Leuprorelin) for nearly 8 years, with an occasional hot flush but never feeling unduly cold.
Thanks in advance for your comments. Just as an FYI: The survey won't identify cause. I think we all might be curious how associated "feeling cold" is with ADT.
Not at all, but that was no option.
Maybe duration of ADT plays a role as well? I have only been on ADT for 10months and don't (yet) get hot flashes that are bothersome so maybe less likely to get cold regulation issues as well.
My hot flashes are minimal compared to some on this board, when I do have one that's noticeable it almost surprises me. But I've noticed I need more layers in the winter.
Darryl
I have turned the heat in my house to 75 F.
Also need to drape a blanket over my shoulders at times specifically in the evenings if reading or watching TV.
It does not seem to follow hot flashes or such, just an over felling of being cold all the time.
It is a pretty cold winter here, and if i am going some where, I warm the vehicle up for 10 minutes other wise I am shaking in it.
the cold feelings were more prevalent when I first started adt. Not so much anymore but with winter here it’s hard to say.
Overheat easily when doing very low effort simple chores, and then overcool after removing a top shirt.
I get hot flashes more often but occasionally get cold...most memorable when going to bed.
I took the orchiectomy route but that has the same effect as chemical ADT. Hot flashes are quite minor and I have not had issues with being cold.
" your BIO --I am a long time bicyclist and bicycle shop owner. In January of 2021 at age 64 I was diagnosed with metastatic prostate cancer with local spread to lymph nodes. PSA was 248, Gleason scores 9-10 all around. After much research and reading I chose to go with a bilateral orchiectomy. Because so few men choose this route I have found it exceedingly difficult to get information about what to expect. Perhaps there is a group of like-minded guys who would want to get in contact and share information on how our conditions change.
--After the orchiectomy the PSA reached a nadir of 0.43 after 12 months. Since then the PSA has continued to rise. As of 8/24 the PSA went to 13.1 from 8.0 three months earlier. A bone scan showed no issues. So far I have had no treatment or meds since the surgery. Suggestions for the next step are welcome. "
AS for myself, at almost 65 in 2015 was diagnosed GL10 tumor right half of prostate. Had immediate bilateral Orchiectomy then treatment was hemi-cryoablation right half and Immunotherapy Injection.
NOTE - Orchiectomy and ADT does not kill PCa. cells. ----- ..... neither androgen deprivation therapy (ADT) nor orchiectomy kills cancer cells directly. Instead, they work to stop or slow the growth of cancer cells ....
p.s. - this morning I completed a 32.23 mile ride on my 42 pound 1999 DAHON Mariner fold-up, 20" wheels - 60tooth 1x chainring - 12/30 Ultegra cassette - 100psi KENDA tires @ 60psi - added Aero-Bars - Ride was fun but tiring. STRAVA as Psycho Johnny also known as the Unique Eunuch
p.p.s. - Orchiectomy effects are often different/less severe than ADT Drugs
Be WELL.
Great to hear from you--glad to hear you're still biking. I'm planning a 30_ mile ride tomorrow.
Yes, there is no cure for our conditions so we do whatever advice and research indicate is the best. I expect to be started on abiraterone later this month since the last blood work showed a PSA increase from 9.1 to 17.3.
Just a FYI, my first PSA increase to 2.5ng/mL in 2018 I had a Axumin Scan resulting in 3 GL6 and GL7 in remaining left prostate. Treated with Focal IRE.
My second increase to 3.0ng/mL in 2020 had both PSMA PET/CT and 3TmpMRI both showing nothing. Let things be.
My third increase to 6.4ng/mL in 2023 had another PSMA PET/CT showed 3 spots again in left half but only 3+3 this time so Watchful Waiting.
If I was in your shoes I'd have a PSME PET/CT cause a bone scan is not the best.
Good luck on the 30+
I live in upstate NY where it is only either freezing cold or hot and humid. Ha!
Lived near Rochester for 40+ years. Agree!!
About to get my second three month shot of elligard and was wondering if it may be the cause of the cold flashes too which usually last longer than the hot ones. Now I head out into 10 degrees to load up the wood boiler...
never cold hot sweat at night 3/4 times can’t have heat on in my bed room must be 14c all night
Been on adt for a little over a year. Lupron and abi/pred. I alternate between frequent hot flashes and occasional cold spells. The cold spells seem to occur at night before bed. The cold spells are definitely more tolerable than the hot flashes.
on lupron q 6 months since 8/22. I have periods (lol) running multiple times a day for a couple of weeks. Then it settles down where I might have none for a few weeks only to cycle back.
I'm using high level Estrogen patches as monotherapy. Extremely effective for PC but not sure if my response is relevant to your study.
On Lupron 11 years. No cold flashes for a while week but previously got a cold flash for a minute or two before the hot flash.
Lupron is still effective for you after 11 years?
Yes. After radiation to prostate failed to cure me, I went on Lupron in Feb 2014. PSA has risen gradually over the years. Now 0.58. Oncologist says he will take further action if it reaches 2.0. I am now 80 years old.
Xtandi 10 years. Uncomfortably cold in winter. Always dress in layers.
I have periods throughout the day when I feel very cold and have to wear sweaters. I have noticed its worse if I am having bone pain and taking medications. I am in the advanced stage of the disease so maybe not relevant.
Four months Orgovyx-hot flashes on/off slightly during the day and worst at night with sweating. Either this is the coldest winter in Southern California in my life or it’s ADT- freezing 24/7 and heat blasted all the time. I keep walking around the house asking “did someone leave a window open?” But always turns out nope; just feels cold in my veins. Dreaming of being off ADT and lying on a chaise lounger for weeks warming up in the tropics and reversing this side effect.
Sorry for those of you that live where it’s really cold with snow, rain, wind, and ice but chemicals in everyone’s body reacts differently. It’s encouraging a significant number of you are experiencing light side effects. Is there any side effects data on ADT over time whereby a drop off or tolerance occurs?
Ken
Hi Darryl. I don't get hot flashes and I put this down to be on a GnRH antagonist ADT, Firmagon AKA Degarelix, which is 28 day depot injection. However starting about 8 hours after the injection I can experience feeling unusually cold, and I can have severe shivers, and I go to bed and sleep about 12 hours, under four woolen blankets. Then I'm fine.
I noticed pretty soon after I went on ADT that I got cold easier. When in a group I used to always be the least dressed in cool weather. Not anymore.
Five years of ADT-- First two on Lupron and last three on Orgovyx. Cold all the time and hot flashes every few hours making it difficult to get a good nights rest.
I purchased an Infrared Sauna. A fantastic device that just wipes away any cold feeling and makes winters here in Wisconsin much more tolerable both physically and mentally. Good for a quick warm up, no need to stay in it till you get sweaty.
While the hot flashes are starting to become easier, the brutal cold weather here in WNY has caused some hour long cold. I thought it was weather related but my wife who is always cold will say she is comfortable and I want to turn up the heat!
I don’t get hot flashes fortunately…..but my cold tolerance is clearly reduced.
in the wee morning hours I’ll wake up chilled looking to cover the sheet with a blanket…
i get cold pretty often. Wonder why i have to wear four layers around the house, compared to one or two, like I used to. Sometimes i wake up in the night feeling like i have hypothermia, and pile on extra clothes and blankets. Sometimes i make a really hot cup of water and drink it. Lately, i take a cool-Cayenne supplement pill that helps a little.
Don’t know how to answer that. Not “unusually” cold for me if it’s a usual part of my life on ADT, but I do regularly feel cold, especially in my feet, and tend to bundle up every evening, or want a very hot bath nearly every afternoon. But I also have to regularly strip layers away for the hot flashes. (Please let me know you’re seeing this.). Dan
I will be on Lupron starting four years in April. I used to be one of those guys that wore a long sleeve shirt and shorts in the winter in the North Carolina mountains. This year especially I am cold to the bone. I just cant seem to get warm. I should add that I am also anemic.
Also note: my new ‘ADT’ is Estrogen and Apalutamide only, but metastatic and on ‘regular’ forms of ADT for years.
tolerance for cold weather has decreased. When it’s cold out, I get REALLY cold. Even indoors, sometimes I sit with an electric blanket. Zytiga, prednisone, Lupron for 1.5 years so far
not cold at all this week, but we’re in the middle of a heatwave in australia ! I do feel much colder in winter though. Wear way more layers than before
I have much less tolerance for the cold now. I work from home, so if I’ve been sitting for a while I can get really cold and bundle on the layers… while my girlfriend is finding the same room roasting hot. Then a hot flash comes along.
I find exercise helps with both.
Since adding Nubeqa to ADT about 8 months ago I have been getting cold spells about twice a day.I thought this very unusual but it’s a side effect I never had on adt alone And yes had to add layers of clothing
I’ve been on Eligard for almost 10 years and , thankfully, have not experienced any significant side effects and these were only after the first three or four injections . I have taken a couple of ‘holidays’, but each time my psa has slowly risen so now I continuously have a quarterly injection .
my hot flashes are not too bad, only once or twice a day for a few seconds. But the cold this winter has been kicking my butt. I wear 3 layers and a jacket and a hat when others are wearing just a sweatshirt.
My wife likes the house at 68 degrees, exactly where i liked it before my diagnosis and treatment. Now, I keep a blanket to cover, and uncover, depending on sweating or freezing. I would turn up the heat, but I can wear sweats, and double socks with long sleeve shirts, she gets the comfortable temp she likes.
Nearly always feel cool but living in Melbourne Australia it currently has an advantage... we have had many days this summer over 30 degrees. Winter are the problem. Now on second series of Lupron.
As a rule, I only experienced hot flashes at night. I take Orgovyx at 8 P.M. daily.
I have never had a cold spell.
I was on ADT Lupron for six months. I’m two months off it, but I still get just like I always have since I got an ADT, hot and cold flashes. They vary throughout the day but I get them just about every hour. I’m hoping that these will subside in the next few months, but I’m starting to question just how quickly that might happen. I do feel some relief after exercising.
hello Darryl
Interesting you are asking this question. Been on adt since 2012. Over the last yr I have been getting really cold for no reason.
I keep a hoodie near alll the time. The cold feeling doesn’t last long. Definitely a change from the past.
No hot flashes, just came back from a weekend in mountains. Not unusually cold there or at home
My husband has had prostate cancer since 2016 and in 2023 it became metastatic. He and I are grateful for the new therapy that is working for him, but this man that loved cold weather even doing his 5 miles in the snow and the rain, is cold ALL THE TIME. The fatigue is also bad, but he rolls with it. He wears heavy clothes, socks and has an electric throw and we bought an electric blanket with two separate controls. Our grown children have had to adjust to their Dad always being cold when he was the direct opposite all of their lives. He is so grateful to God he is doing as well as he is & he never complains - never has about anything - but so grateful this came up on this forum. We thought he was the only one!
I’m on Orgovyx and Xtandi and get unusual chills around my shoulder areas 2 to 3 days per week. Did not have this issue when on Orgovyx alone. MO says she encounters this issue frequently.
I realize I answered your poll wearing lined slippers and a puffy vest. I think I’m in the 6-7 day category. No hot flashes since I restarted Lupron 15 months ago.
hot flash, sweat, then cold until sweat dries off. Always carry a jacket or extra shirt. Florida air conditioning kills me.
hi Darryl, I have been taking Eligard/Lupron along with Bicalutamide for 6 years. I have hot flashes throughout the day and night with two or three being quite intense but nothing intolerable. If I’m not having a hot flashes, I feel cold all the time, not a “cold spell”, just chilly and keep the heat at 72°, often wearing a sweater. I do not believe this is from the meds. The hot flashes are definitely from the meds.
Wow, I just read a bunch of the responses. I thought my feeling cold was because I list a bit of weight—obviously not! This is great that we share this kind of stuff. Thanks
Husband has been on Eligard for almost a year. Doesn’t tolerate the winter cold and has to layer up inside as well. He is also anemic and Dr. thinks Eligard is contributing.
I get very cold every day at around 16h00 and it lasts between an hour or two.
From Hot to freezing (and vice versa) in seconds! Every day. Some days worse than others. Harmone treatment = no control in many areas. Literature says only 1 in 10 have 'symptoms'. I have them all and in spades.
ADT = Eligard & Xgeva (quarterly injections) & Erleada (pills at home) same time every day. I am told this is SOC (best Standard of Care - USA_SE).
