Not feeling great

[Chubby42]

Hi all

The last few weeks I have no been feeling great even though my PSA is currently undetectable been on Hormone treatment & metformin for 14 months now.

Apart from the hot flushes & feeling lethargic Im also getting pain in my left arm neck & throat, Ive been to the local Dr & hospital but they couldn't find anything wrong I had the usual test like Blood & ECG but the only thing the found was High BP 160 over 110 which settled down to my normal 130 ish over 93/ 95.

Any other suggestions could it be the metformin.

Cheers

Gary

[NPfisherman]

Chubby,

I have attached a list on metformin SE, etc from Mayo Clinic--see below:

mayoclinic.org/drugs-supple...

The thing that concerns me is the left side involvement--an ECG is not a definitive test for cardiac ischemia. My ECG was fine--I did a stress test and it showed a little ischemia and inevitably, I had a cardiac cath revealing a 99% occlusion of my LAD--I had a bypass surgery and been fine since--No MI--...(knock on wood)...Your b/p is high...DBP >90 is not well controlled Hypertension.

Do you have diabetes or just on metformin for prostate cancer ? If diabetic, an increased risk for cardiac arrest..MI.... add that to your hypertension.... If I were you, I'd....

Get a referral to Cardiology and have a stress test...

Best of luck,

Fish

[Chubby42 in reply to NPfisherman]

Hi NPfisherman, I take the metformin because I'm on the stampede trial so its part of my protate cancer treatment, I have an appointment with a cardiologist on the 4th March hopefully will get to the bottom of it I know its not muscle pain it gets worse when Im out walking the dog & subsidies when I relax but for 2 weeks has constantly been there.

Thanks

Gary

[NPfisherman in reply to Chubby42]

See if your MD will give you some nitroglycerin tabs to take sublingual when the pain hits....if it gets better with the nitro, be seriously worried...all the best..

Fish

[Hirsch in reply to NPfisherman]

You write like a physician

[NPfisherman in reply to Hirsch]

If you saw my writing in real life, you would think I was one....LOL... all the best...

Fish

[Chubby42 in reply to NPfisherman]

I have some in liquid form to put under the tongue, not sure if I should try it now with the arm & neck pain or is it just for the heart.

Gary

[NPfisherman in reply to Chubby42]

for the heart...if you walk the dog and the pain comes...you may wish to try it....How did you get liquid??... they gave me tabs to do sublingual

[Chubby42 in reply to NPfisherman]

Its a spray, you spray under the tongue

[NPfisherman in reply to Chubby42]

Gary,

Thank you for your participation in the STAMPEDE trial...a marvelous trial that is getting some real answers to increasing OS in prostate cancer... I salute your courage....

Now, if the NCI Match trial does as well, we will all be doing much better and surviving longer..

Best of luck,

Fish

[CalBear74 in reply to Chubby42]

Chubby listen to NP. I spent many years involved with clinical triage. The symptoms you describe need to be evaluated by a cardiologist before March. You would be sent by our triage nurses to a hospital ED in an institution with a cardiac center of excellence. Please take action today.

[Moespy]

Chubby42,

Sorry no suggestions, just a shout out to you that I hope you feel better real soon!

Best!

Jim

[Chubby42 in reply to Moespy]

Thanks Moespy will try

[softwaremom00]

My husband finds that a cup of cordyceps and lions mane(1 packet each) from Four Sigmatic in the morning really helps perk him up. We use the elixirs because you get more for the money. You can buy it on Amazon or from Four Sigmatic directly. It mixes fine with coffee or tea or hot water with a little cinnamon and honey. They won't help with the cancer though .. cordyceps helps with energy and the lions main is supposed to help with your brain function..My husband has found it to be a good combination.(I take it too.. and find it really perks me up) Try to keep moving.. I know it is hard when you hurt. It will help increase your energy.

lots of hugs and prayers!

Softwaremom

[MarkBC]

"Not feeling great" can mean a lot of things. I find the ADT sometimes gets me down and feeling lethargic. I find I need to force myself to get outside and walk around and do something physical. It often means I need a nap afterward but I always feel a lot better.

[Chubby42 in reply to MarkBC]

Ok maybe I should have put am I having a heart problem or stroke.

Thanks

[charlesmeyers1964]

if u have had a bone and cat scan and it shows nothing then tell the doc your off of metformium for a month then have another psa and see what happens. sometimes its the drugs that are effecting u not the disease. take a break and see what happens.

charlie

[Chubby42 in reply to charlesmeyers1964]

Thanks charlesmeyers ill suggest it to my Oc in a few weeks time, I could come off my metformin, but I have just had a 3 month injection of Zoladex.

Cheers

[6357axbz]

Is metformin technically part of STAMPEDE? I thought STAMPEDE compared only using ADT versus ADT plus prostate radiation.

[Chubby42 in reply to 6357axbz]

Hi 6357axbc

There are different arms of the stampede trial I'm on arm K wish I was on G or L can't remember which one but that includes Abiraterone.

[6357axbz in reply to Chubby42]

Why do you wish you were on the Abiraterone arm of the trial?

[Chubby42 in reply to 6357axbz]

I think I read it works better at the beginning of ones treatment.

[6357axbz in reply to Chubby42]

Thanks C42

[Startanew]

I have had the same problem my collarbone and my neck hurt all the time they've done tests and they can't find anything getting another x-ray this next Friday to find out if they can detect anything

[Chubby42 in reply to Startanew]

Hi Startanew hope it goes welk m8, my next test are on 4th March.

Cheers

[Startanew in reply to Chubby42]

well good luck with your next test they did put me on a week's worth of steroids and it did help a little bit with the pain and inflammation but good luck

[charlesmeyers1964]

i've been taking metforim for years why u aks, because they told me so. just like i take a med for high bp but haven't had high. the doc calls it maintaining thats all i know. i would check it up on google and see th pros and the negs if one stop taking metforium and then u make the decision. make sure u get tested every month. i've been tested for my psa and if the zytiga is harming my whole body. from the testing my zytiga isn't close to harmful range and my psa has dropped a whole 1.0 and i'm fine with that. its now 37 starting my 11 year.

charlie

[Graham49]

Suggest you tell the staff running Stampede immediately of the symptoms, and not wait until 4th March.

[Chubby42 in reply to Graham49]

Yep did that this morning,

Cheers

[j-o-h-n in reply to Graham49]

I DITTO THAT.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/13/2019 2:42 PM EST

[bobdc6]

130/95 would make me feel bad.

Bob, G9

[Chubby42 in reply to bobdc6]

That seems pretty much the norm for me, ive never been that much over weight but use to eat a lot of crapp.

[EdBar]

Perhaps see a cardiologist? I don’t believe an ECG would detect any blockage or narrowing of the arteries while a stress test and cardiac ultrasound likely would. I started seeing a cardiologist a few months ago at the urging of my wife. I have a history of high BP and cardiac issues in my family and she was worried about my being on ADT for nearly 5 years. Now I see one every 6 months, the cardiologist is part of the medical team I’ve assembled.

Ed

[Chubby42]

Yep booked for 4th March.

Cheers

[GoEZ]

I found that many of the side effects of the medications piggy back on preexisting conditions. I too had the neck and shoulder pain. My elbow, hands, and lower back would also hurt. These pains all began after starting Bicalutimide (Casodex), and Enzalutamide (Xtandi). The specialist couldn’t do much for me because the treatments would interact with the cancer drugs. Therapy aggravated the pain and pain pills were hurting my stomach. When those two drugs failed (spiking PSA) I was put on Abiraterone (Zytiga). Two to three weeks later all the pain went away. I was feeling great and had more energy, however 4 months later I did have a mild heart attack. I have arthritis throughout my body (bone scans light up like a Christmas tree) and I do have heart issues. I found the microwave bean bags help my neck and shoulders. A good heating pad helped my lower back loosen up. Heat on the spots that hurt didn’t get rid of all the pain but relaxed me enough to go to sleep. You have received some good advice about your heart. You should also be checked for arthritis. Hope you find something that works for you. Good luck stay fighting.

[Union98]

It is possible your electrolytes are off - when husband was first diagnosed I had panic attacks and pains around my heart. Went to a cardiologist and did stress test, ekg and calcium CT. All normal. He gave me some anxiety meds (but I refuse to take meds long term). At the time I was also eating low carb and found out that low electrolytes can mimic heart problems. I started taking potassium and magnesium supplements and the pain went away. If I slack off the supplements, the pain comes back, back on and it goes away in two days. Many of the prostate cancer drugs mess with electrolytes so it's something to think about.

[ROLNCIN1]

Hi Chub,

Sorry to hear you aren't feeling well, but glad to hear of an undetectable PSA.

Perhps it's time to have a scan done. Have you seen your Oncol...?

I have friends who had to get off metformin as they were causing joint aches .

Good luck!

BOOGEE

[Chubby42 in reply to ROLNCIN1]

Hi m8 yep Im booked with the Onc on 13th March, I'm going to stop the metformin for now & see if that helps, i would rather try that first before stopping my HT.

Cardiologist booked 4th March.

Cheers

[monte1111]

Agree with others. See the heart dude ASAP. Suggest today. Prostate cancer may be a slow killer but heart attack can take you out before lunch. Don't guess or self treat on this one. Good luck.

[Startanew]

Mine started out in the socket of my collarbone but now it's going down my collarbone

[GeorgeGlass]

Is your supraclavicular lymph node swollen?

[j-o-h-n]

Do not wait until the 4th of March and get a Checker...oops Checkup .

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/13/2019 2:45 PM EST

[Bebby1]

I’m sorry you have been feeling under par

It’s hard enough to cope with the diagnosis let alone feeling physically unwell

Being a registered nurse I can tell you that a blood pressure of that reading will give symptoms on its own

The pain in your neck can be just that

The blood is pumping so hard around your body

I hope your Dr has you on medication to bring that BP down to normal levels

My husband often feels crap being on the hormone

I hope your days are brighter

[Chubby42 in reply to Bebby1]

Hi Bebb1

I have Bisoprolo, Asprin I take daily & Nitroglycerin incase I have a heart attack.

Thanks

[Hidden]

I just hope you feel better soon . Meditation and green tea may help

[Bebby1]

That’s good

I really hope you improve

As a wife who watches on it is so hard to see someone you love suffer in any way

And nurses tend to know. A Little bit about a lot

Keep your BP under close check

If you can maintain normslish levels it is then you will be able to decipher other symptoms more clearly

Take care

Stay strong

[Hidden]

Welcome to my almost exact symptoms. No high blood pressure thankfully.There are more. I’m no guru . Not a doctor. Although I’ve recently been named a voodoo Priest because I live by nutrition and a holistic as possible diet. I cheat . I’ve been non detect 3 and 1/2 yrs out of four toiling with APC and side effects. Toil in my case was putting it mildly. Ive put my wife and myself through hell.. The newlywed show.. Pain in the left side sounds bad and blood pressure would be better lower. Are you able to be active?? It the old adage eat to live. Just my personal preference. I believe food is medicine. Mod med can help us live but we deal with the toxicity of treatments . Exersize in any form is good for everything.Problem is castration takes that old get up and go out of us. I got leveled with fatigue. Have to jump the fatigue syndrome. You must take care of your heart extra special now . We all do.. and by no means are you alone on this ship . It’s loaded to the gills and so many new guys each day jumping aboard. And also so many kind soul in turmoil and suffering. It is quite a path. Others will help you with your questions . I know nada on metformin. What’s your take on it? Some that usevitvwill answer . . Just hang in there . That’s all any of us can do if we’re lucky enough to be around for awhile we just might see some breakthroughs. I didn’t feel lucky getting the crap knocked out of me by APC . Truth is I can only blame myself. Thought I was invincible .Wasnt paying attention, had pc in me for years before dx so they said and I concur. I almost killed myself by not going to doctors .. Take care.

[Chubby42 in reply to Hidden]

Hi Lulu700

The only thing I know about metformin is what my Onc told me its a diabetic drug and men on this who develop PC tend to do better on the Hormone treatment so its in the trial I am in, from what I understand of PC which isn't much you can just be unlucky if it's hereditary but the Gleeson score could still be dictated by your life style. I think we all think we are invincible and it will never happen to us its strange I have an identical twin brother so I do a lot of comparisons between him & myself but don't think I'm any wiser the only major difference is sugar, he never really had the sweet tooth I had and he stopped drinking full strength coca cola 20yrs before me which of course is loaded with sugar. He still smokes but I gave up 15yrs ago, so go figure.

Take care m8

Cheers

[Hidden]

I’m on a test drug too. Metaformin , any known side effects? Looking back before pc I told myself that I ate heathy . A lot of fish and chicken little red meat or junk food I was in denial about how much sugar I used to eat . I found out when I cut all sugar out.. I loved deserts .. still love all foods . Anything once in awhile won’t hurt us .. But I’m on the sugar kills us train. I feel much better on a clean diet. But each to their own . You must enjoy food also.. Being a twin must have been fun I’d think? My dad and unc had pc. I’m the only one out of four sons that’s got it,and I’m the youngest . I lived a fast life. Not no more . It’s the simple life for me .. please, let us know how you get Past the bop and pain. The first two yrs with APC I d have so many weird shooting pains nd crazy stuff going on with my system learning how to live with no T . Also I did RT . Both it and adt can cause so many weird side effects. I think that you’ll get better. I’m no Dr . But I did play one on tv. Good luck. ..

[GeorgeGlass]

How are you feeling now Chubby?