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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

I went to my annual lymphoma wellness check last week, all ok.  I mention this because in reviewing "issues" I told the N.P. that I have been experiencing episodes of "radiating heat."  I feel like a nuclear reactor, and people sitting near me have commented over the last few months that I feel "hot" (they sense this wihout touching me, just by being nearby).  Not continuous, but often enough to be an issue.

I have not had a fever, no colds or flu.  The N.P. said it would have to be hormonal, related to my prostate removal over two years ago.  The R.P. took the gland and seminal vesicles. The testicles were not diseased or involved in the surgery.  I have never received any form of hormonal therapy.

To my awareness, I have never had my T tested -- I have never seen it on my lab reports.

The N.P. told me to have the urologist investigate this at my next appointment, which is in October.

I will be appreciative of any insights,

max

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Maybe it is a hot flash symptom due to menopause. We men also experience those moments so typical of woman, at a certain period of our life. I call it age. But you are young. LoL

Surely it would be related to hormonal unbalanced. Testosterone, lipids related to diabetes and dexa scan tests are recommended.

Best

VG

 

Butch1969
Posts: 25
Joined: Jan 2016

For me it's the Hormone shot of Lupron.   They cone every hour.  A pain in the neck but I'm getting used to them.

Will Doran
Posts: 207
Joined: Sep 2015

Max,

I am having the same situation as you mentioned.  I am now three years past diagnosis.  I had a PSA of 69, Gleason 7 when diagnosed.  I had robotic surgery in Dec 2013,  Followed by 2 years of Lupron and 8 weeks of radiation.  I had hot flashes all along,  Then when I went off the Lupron, 6 months ago, the hot flashes started to subside. Then, the Chemo Oncology Department decided I needed to go on Prolia to rebuild bone density that was lost in my femurs. Damage from the radiation was found in a bone density scan.  The Hot flashes started up again.  Turns out some people have hot flashes while on Prolia.  They had my testosterone knocked down to 17.  Normal is 250 - 1,100.  4 months back, My Testosterone had started to come back up and was a 134 (PSA still at <0.010).  As of last week my Testosterone is up to 320 (PSA now at 0.035--doctors said this would probably happen), which is back within the "normal range".  However I am still having hot flashes at times even though I'm coming to the end of my 6 month Prolia infusion and I've been off the Lupron for 6 months .  I'm going to ask about all of this on Tuesday (9/6/16) at my 4 month check up.  I had pain in my testicles when I was first going on Lupron.  Now after being off the Lupron for 6 months and the testosterone coming back up, I'm having more testicular pain.  My hot flashes are not continuous as you stated, but come in the afternoon and evening especially when the weather is warmer, and usually after I have eaten a meal.  My wife will look at me adn say, "Hear it comes."  My face gets red and she can feel the heat.  Then I start to sweat.

So, you are not the only one dealing with this.  Hang in there.

Peace and God Bless

Will

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Had my annual PSA draw today, two years after DaVinci.   "Undetectable," which their lab sets at a very low threshold ( < .04 ).

I'm thankful. Everybody keep fighting !

max

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Keep up the good work....time for a toast

Josephg
Posts: 146
Joined: Jan 2013

Congratulations, Max.  I will toast your excellent news tonight with a glass of red wine.

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Cure under the disguise of Remission

Two Years is like a mile stone and the LLD of your laboratory is lower than remission level. You are a good example of a successful treatment. Congratulations.

I will celebrate too. 2/4 vegetables, 1/4 sea fish plus 1/4 grains, and the very best red Esporao.

Saude

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

My hands are getting unsuabe from neuropathy, tyoing something this long with corrections takes a lot of time for me now. To continue here or at lymphoma I would like to know if anyone kknows of any vocide dictration that would be uaable at this site or other blogs ? ANy info appreciated.  Hands numb, wrists staying swollen despite diuretic, all  unrelated to PCa .

max

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I am sorry for this situation that you are experiencing.

I suggest that you make a trip to an Apple, Microsoft or computer store such as best buy, staples, office depot and ask one of the experts who work there. Additionally an organization that caters to the blind may be a source of informaton.

 

 

Josephg
Posts: 146
Joined: Jan 2013

Hi Max,

Dragon Naturally Speaking software has been getting better each year.  It retails for around $100, and I think that it would work for you.  If you do not already have a microphone with, or built into, your PC, you will have to purchase one, as well.

Good luck!

Old Salt
Posts: 720
Joined: Aug 2014

Please continue to contribute to the Forum/Discussion Board.

We need it!

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Max,

I am shocked for the new. What is happening? You can’t use your hands? What is the cause of the neuropathy? Are you taking any medicines or still caring for the lymphoma issue?

I am sorry if I want so many answers though you probably cannot write them. You do not need it. I hope the situation is momentarily and that it improves the soonest.

I wonder if I could help with some investigation. I know that the lack of vitamin B12 causes peripheral neuropathy. Diabetes is also linked to neuropathy issues.

You may feel frustrated for not being able to communicate with forum comrades.

Best wishes for improvements,

VG

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

I have made some diagnostic progress since I wrote regarding the neuropathy/ hand shaking about a month ago.

First, to answer Vasco, the initial cause of my neuropathy is known and has been known: Vinblastine, a chemo drug I had a lot of back in 2010, when I had the Lymphoma.  Initially mine was severe, up to the knees from the feet, and about to the mid-forearm in the hands. Vinblastine routinely causes at least some neuropathy, which can persist or gradually fade.  I still have significant neuropathy from this drug, the symptoms just never faded in my case. (Note: Neuropathy causes a numbness and lack of feeling to the touch, but not tremor.)

I was part of a neuropathy cream clinical trial in I believe 2012, but the cream (similiar to what diabetics use, anti-depressant-based) was judged a failure.  I have had neuropathy ever since, but the shaking worsened at times.

My GP ruled out Parkinson's and a similiar condition known as Continuous Tremor (sometimes called 'Essential Tremor').  The apparant cause is panic attacks .  My symptoms are classic, textbook: Hands go numb and shake, feel very weak, feel faint, agitated. Get very woozy, as if I'm going to hit the floor in a moment. Some people have chest pain with this, some do not -- I do have severe chest pain during mine.   I have not myself ever passed out from this but some people do; you might recall that Tony Soprano had frequent panic attacks during the last few seasons of that TV series.

 I had always thought in the past that it was hypoglycemia or low blood sugar, but my glucose is always perfect (something has to be healthy in me !). But most of the symptoms between panic attack and hypopglycemia are similiar.    Doc is experimenting with the mildest drugs possible at present.

I know this is not "PCa-related," but I have always thought it rude to ask a question at these forums and then never update people later. Someone will read this and it will be of clinical benefit to them.

max

FinishingGrace
Posts: 83
Joined: Apr 2017

Hey Max,

I rarely feel like I have anything to offer on the board but I had a thought about this problem with neuropathy. My best friends husband suffers tremendously from neuropathy in his feet and ankels. He has experienced great relief through the use of essential oils. I asked and she said he applies lavender to the bottom of his feet then applies a second 'coat' of peppermint. They have been amazed at how much it has helped. He uses it every night right before bed.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

To the contary, Grace:  I find all you write to be spot-on and insightful. Will consider the blams you mentioned.

max

 

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hewhositsoncushions
Posts: 253
Joined: Mar 2017

Max

I sympathise - I really do. I have suffered from PAs for a long time. Had nearly cracked them this came along and I was having bouts of tachy up to 170 with flop sweats, blood pressure yoyoing and heavy palps. Not fun. I saw my GP and got put on Trazodone which cracked it and got me back on three mile morning runs without having to call 999 (drug choice a win win because it is a new wonder drug for dementia it seems :)) Only side effect is a late evening crash when it wears off. EDIT - Trazo also gives Bradycardia which drops your RHR and BP - very nice to wake up after a night without heary gynmastics I can tell you!

PAs suck because there is often very little you can do in the acute phase other than ride them out and try and remain calm. Your breathing causes CO2 levels get to off whack and your sympathetic and parasympathetic nervous systems start having a blazing row with you as the one in the middle. Not fun.

I don't need to tell you about lifestyle changes (stress etc.) but meds are an option (find the ones that suit) and one extra thing I am having is a sleep study (I have sleep apnoea and CHVS). CHVS (Chronic Hyperventiliation Syndrome) is where your breathing is out of whack permanently causing chronic CO2 level fluctuations and making it easier for PAs to kick in. Worth a look if you want to hit your issues holistically.

Good luck!

C

VascodaGama's picture
VascodaGama
Posts: 2932
Joined: Nov 2010

Hi, Sailor

It is good to know that you are back to perform. Though you are cured, this forum needs your presence. Talking about sailors, we had one here (Kongo) that many are missing now. The sailor says: The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.

https://csn.cancer.org/user/119224

Best wishes.

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Thanks for the many insights, Vasco.

I recall when I used to read here before I joined, when Gary and Ed were dying with PCa.  I always enjoyed Kongo's posts; you and he were sort of comasters at that time, before he chose to move on. I wish he would post on occasion, if he can.

I did not know Kongo was a sailor.  This song captures the spirit of the life beautifully, at least of surface sailors....  Your home there among the Portugese, from that tiny little spot, were for centuries the world's greatest sailors discovered most of the world for Europeans.

https://www.youtube.com/watch?v=AeXeUUCpOYg

Every port we ever transited out of, the dolphins do this: They love to pace submarines, and will dive continuously back-and-forth over the bow, often for dozens of miles if not more. They seem to never tire.  It is something genetic in them.  We surfaced and did a swim call off Andros Island in the Bahamas once, they love to swim around people in the water.   

https://www.youtube.com/watch?v=9bKwRW0l-Qk

 

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