Body Temperature - please help

vampeyes

I am desperately looking for help. I am almost two years out from treatment and almost two years on Tamoxifen. Lately my body temperature will go from cold to the bone to hot flash to normal and start the cycle over again. I will just fall asleep and be woken with a hot flash. Honestly it's starting to wear me down, depression is setting in.

Has anyone found relief? Is what I am going through more than hormones?

NancyHB

I’m so sorry your experiencing this hormonal misery. I’m sitting under a heated blanket right now safe in the knowledge that at any moment I’ll be tearing my sweater off and wiping sweat from my chest. It’s been like this for me for years now, and it feels different than “just a hot flash.” I feel like my hormones are just all sorts of unhappy.

I know for me that sugar and alcohol seem to make it all much worse. If I have a strong drink or a couple glasses of wine my night will be awful. I avoid large servings of sugar, too - cake, brownies, fudge, ice cream, candy, all of that. Exercise seems to help, too (running, yoga). I’ve often wondered if what I’m feeling is related to blood sugar spikes/drops? Maybe that’s not a thing, I don’t know - I just know it’s how it works for me.

I hope you find relief soon

Spookiesmom

Before cancer, I was dx with diabetes. One night I was sitting under an a/c, just pouring sweat. I managed to find my glucose meter. Yep, I was crashing.

If you think you could be diabetic, you can buy a cheap meter and strips at Walmart. Get a finger poker too. Keep track of the numbers, if you see below 70, get in to your PCP. Do finger sticks when you have the sweat attacks

Sounds weird, diabetes scares me more than cancer.

CBK

Vampeyes

I was peri-menopausal when I had my ovaries removed and then was placed on Arimidex. I had debilitating hot flashes like you describe and then go cold. I almost welcomed the cold because then I was able to sleep until the cycle started again!

I knew mine was hormones because of the obvious chain of events I had just shocked my body with. My MO recommended acupuncture and I did get some relief! CBD has helped me tremendously with hot flashing too! I didn't even start taking it for that purpose but began to notice a huge difference.

NancyHB recs on diet and exercise are definitely spot on! Exercise is really important and moving in general.

I honestly know how awful this is and I wish you some relief and peaceful sleep!

Rah2464

Vampeyes I am sorry this is so miserable for you and I can definitely commiserate. As I type this I am drinking coffee trying to wake up after a miserable night of cold/hot/cold/hot/cold/OMGHOT!!!

I haven't been able to discern a pattern other than I definitely feel alcohol and sugar can spike the activity.

I do feel acupuncture helps me tremendously, I can tell when I am due for a session . I go every three weeks to try and stretch it out some. The CBD oil is an interesting suggestion. I may look into that as summer rolls in.

gb2115

Sorry, tamoxifen does this, causes hot flashes. I haven't tried anything to counteract them, I just wait them out, and have gotten adept at layering clothes. I'm three years into tamoxifen and I'm finding the flashes are not happening as much lately. The only thing I have noticed is it's more likely to happen during moments of stress or anxiety.

vampeyes

Thank you everyone for your responses! I am sorry you are all suffering as well, but I will say that it is nice to not be alone.

I will be calling an acupuncturist today! I use THC oil to help me sleep at night, but quit the CBD oil, I wonder if things got worse since I quit the CBD oil....may have to order a bottle and see if it makes a difference. I have been trying to keep an eye on my diet and been getting in lots of walking. I may need to up the diet to even less sugar, I will try anything for relief.

xxx

CBK

Vampeyes

I very interested in how things go for you to help with fluctuations in body temperature.

I went for several acupuncture treatments early out of chemo and losing my estrogen, my acupuncturist so kind and spent extra time with me. I remember the point he emphasized was the inner ankle on left side. There was so much going on at that time, but I remember how much better I slept and flashes did diminish.

I also would love to hear if you do switch back to CBD, if it makes a noticeable difference to you. I never took THC oil. Not that I have anything against, it just doesn’t work with my body chemistry well!

Hang in there! And please let us know how you fare! It’s a process!

vampeyes

CBK - I have my first acupuncture visit next Wednesday. When I talked to the acupuncturist she said it can take up to 3 times before it works, but they have had great success with it. I look forward to getting started! I will probably wait on the CBD to see if the acupuncture works first, if it doesn't I will give it a go again. Could be, I remember I was suffering badly like this early fall and then I felt better for a few months and now it's back with a vengeance. The worst part is feeling like I have the flu constantly.... the cold chills, the hot flashes, the aches in my upper body. I am not likely this getting older stuff! haha

CBK

Vampeyes

I am excited for you, making me wanting to schedule a tune/up! I love acupuncture... gives me a nice zen feeling every time like I’m floating in the warm waters of the Caribbean! I remember the hot flashes getting better right away. Hopefully this will be the case for you!

Do you think the aches in upper body could be related to lumpectomy/ rads and nerves regenerating? Or is it more joint pain like? Those cold chills and hot flashes do make you feel like you are coming down with something.

Re: CBD I think it’s a real smart call to leave everything status quo while you start acupuncture and change things up if need be!

You are not getting old... you are fighting the effects of these drugs that can really be difficult to deal with. You will do this! Wishing you an easeful appt on Weds. and some much needed relief.

Keep us posted!

WC3

vampeyes:

This happens to me but has been since I began treatment. Since this is something new for you, you might want to run it by your doctor.

Here is my ridiculous sleep formula at the moment.

1. Chill/heat bedroom to 68F.

2. Take a warm shower before bed.

3. Put on sherpa socks and sweat pants and long sleeved t shirt.

4. Take t shirt off 10 minutes later.

5. Go through a few cycles of pulling blankets on and throwing blankets off.

6. Finally fall asleep topless with one blanket on and the other halfway off.

ctmbsikia

I started the menopause cycle around 47-48 yrs old. Periods started going wonky and I had some emotions I had never felt before. From crying to wanting to physically hurt some one. Everyone in the house survived those years! I described this to a few friends who had yet to begin this process as I was having a hot flash every minute of everyday for 24 hours a day. The freezer and I began to have an affair! I no longer could sleep a straight 7-8 hrs, had to get up and go, or I just woke up in a full out sweat, and it was hard to take. Fast forward 7 years it's like I'm in "super" menopause. I quit red wine, it helped. Switched to white. I do also think blood sugar and diet play a part in the frequency. I started hot flashing right out of surgery. When I first met my MO and told her she looked perplexed as I hadn't started the AI yet and her reply is that it is could be the stress factor.

So, just adding this to the list. I have noticed the more stressed I am, the higher the frequency of hot flashes. Actually the stress for me is all out sweating!! I'd like to go back to the hot/cold thing! I feel for you all and we are truly doing our best to keep from suffering and get on with living!!

vampeyes

CBK - Thank you for your kind words, I am really looking forward to it, only wish it could have happened sooner! I will let you know how it goes, I admit I like the sounds of how you noticed results right away. Why did you stop having it done?

WC3 - Sounds like my night, start off freezing and end up almost naked! Yesterday I was cold all day, really cold, except when the hot flashes hit. There was one flash that I swear my legs felt wet, not a pleasant feeling.

ctmbsikia - some days I really hate being a woman. How did you handle the mood swings? I think my friends and family may disown me. lol

CBK

Vampeyes

Ohhhh!!! I had a very long winding road of therapies and breast reconstruction. So as you can see from below signature; one thing after another just kept hitting me.

I struggled to stay afloat, went through extensive physical therapy and dabbled in multiple modalities for healing! But acupuncture started my healing.

I remember my acupuncturist saying on my first day there when I was in tears “this is you first day on your road to healing, and everything from this day forward is going to get better". That first session was so profound; mentally, emotionally and physically.

Please let us know how you fare. I'm wishing you relief! It will come, in the meantime keep reaching out!

PS I keep meaning to ask you what kind of dog is that (your profile photo)? I’m fosteringa dog right now that looks very much yours but have no idea what his breed is!!

Peace!

vampeyes

Hi CBK,

That is awesome that you foster fur babies! I would have a zoo if it were not for the cost and my husband. haha That is Scrappy, she was a Shepherd and Black Lab mix.

My goodness you did go through a lot! At the time I felt sorry for myself for the two lumpectomies, then you come on here and see other peoples stories and you realize it could have been worse. Did you have positive lymph nodes? Thankfully I didn't so they opted for no chemo especially with my low oncotype score.

Have a great weekend.

xxx

CBK

Well Hello to Scrappy! He’s very cute! Yes I constantly foster. Even through chemo and surgeries I fostered! I like to take on the hard luck cases; the sick and the deranged- Hahaha!!

No I didn’t have lymph node involvement! I had a very high Oncotype and tested positive for Brca gene. Hence, my aggressive treatment plan.

Hang in there!!

vampeyes

Hello All,

I wanted to give you an update on how the acupuncture is going. I have had two treatments so far and have noticed a HUGE improvement. I am very pleased with this. I just hope I do not have to keep going weekly for treatment as this could get very expensive. I have also found that coffee is indeed a trigger for me....boo! Time to try and cut back on the amount I drink. I gave it up once a long time ago I am sure I can do it again.

CBK - I bet fostering during treatment helped to keep you focused on something other than the cancer. How are you feeling?

Have a great weekend all.

xxx

CBK

Vampeyes-

Yes costly if insurance does not cover. But gave me great relief. I had the same dilemma.

But my situation was so severe I had to do something whether I could afford it or not.

I cut all caffeine except a small matcha green tea latte once a day.

I’m doing well. Thank you!

Don’t forget as you progress to rethink CBD orally. I’m telling you a game changer. And I totally agree, go slow to see what’s working and what’s not.

Exercise is proving difficult for me now and I know it helps. But with this virus I’m avoiding gym and I’m in a conflicted mode!

I’m so happy you are getting some relief. You WILL get through this!

Thanks for letting us know!

boogirl

Hi, thanks so much for this thread as I'm in a similar situation having moved from Tamoxifen to letrozole recently once established I'm truly in menopause. It has been awful, but particularly the hot flashes / sleepless nights, and the weight gain no matter how much exercise, diet and attempt to sleep well are followed. We cycled different Letrozole manufacturers as I was getting whatever was in stock and had a big reaction to one brand. Teva seems a bit better but I definitely miss tamoxifen (who ever would expect to say that). I have a great oncologist who wants to work with me to solve this, but so far it's been tough.

I'm starting acupuncture tomorrow but am intrigued by CBK's comments on CBD oil. How are you taking it / time of day, amount? What side effects do you see it helping the most if you can tell? I will give acupuncture a couple of weeks first so I can distinguish the impact, but would love to know more.

I would love to get rid of the hot flashes and the weight gain (it's shape too, letrozole seems to bloat my middle, who needs that?!). If these changes don't help, I'll be switching to a different AI it sounds like in hopes of less SE's!

CBK

Boo girl

I originally tried CBD for joint issues related to my ooph and Arimidex! Not only did it make an amazing difference in that area, I started to notice other changes.

Sleep started to get better, hot flashes diminished considerably, and my overall mood was more mellow.

I take CBD oil orally. Nuleaf is the brand. It's organic and sourced in Colorado. You have to play around with dosing. They recommend you start with 10 drops I believe. It's in the packaging. I take a dropper full am and another pm; generally speaking. I notice a big difference when I forget to take it!!

I can sympathize with the weight gain, I really struggled with this and I never had a problem prior to ooph and Arimidex.

Good luck with the acupuncture and I hope it gives you some relief. It seems to be effective on many levels.

vampeyes

Boogirl, could you not just stay on Tamoxifen? I hope that acupuncture helps you like it has me. I have another session tomorrow, going to ask about bloating and cravings.