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When do you start feeling better

Hdoneill
Posts: 6
Joined: Aug 2013

I'm 52 year old male, 15 months post op for stage 3 tumor.  Had 6cm tumor removed( laparoscopic partial ) in April 2012. Major urinoma problems from September 2012 through January 2013.multiple nephrostomy tubes. Ablation surgeries weekly for 3+ months..  still feeling terrible, severe hot flashes, sweats, lethargic.   Doctors stated I have low T.  Taking meds for that,  see nephrologist, internal medicine and oncologists regularly.   No real definitive answers yet, nothing showing up in tests.    I was just wondering if any others experienced same problems? How long?  Months,years?    Driving me crazy, tired of feeling tired...  Is this as good as it gets??   We live near Baltimore and Washington, D.C.  Been seeing first class doctors and surgeons so I have confidence in treatments..  Any advice or help would be much appreciated.  I can also offer insights on my experiences.  Just looking for answers as all of us are ...   Thank you,  looking forward to response.      Doug

NanoSecond's picture
NanoSecond
Posts: 560
Joined: Oct 2012

Hi Doug,

What you are describing does not sound right.  At this point in time I think you should not be feeling exhausted.  Perhaps your fatigue is related to one or medications that you are on?  Have you checked to make sure there are no adverse interactions that might be at play?

Are you, for example, taking any statins?  If so, they will reduce your natural level of Coenzyeme Q10 - a key enzyme in normal cell metabolism.  When it is low or lacking you can feel tired and/or depressed, etc.

Are you seeing an experienced RCC oncologist regularly?  There are several in the DC area (that's where I reside too, BTW).

It might help if you give more specific information about your situation.  Also, you might consider joining SmartPatients.com. There is a lot of very detailed information available from numerous other patients and caregivers on that website.

 

Hdoneill
Posts: 6
Joined: Aug 2013

Thanks for the advise, I do not take statins.  I've had diastolic hypertension and have been treating it since I've been 18.  My blood pressure has always been controlled. Lately I'm on Teveten/HCT and varapimal. I also take ultram ER for slight spinal stenosis( leg pains).  That's how my tumor was found, a lower back MRI and my world changed. While I'm thankful it was found prior to becoming stage 4 I'm just tired of not feeling well.  I've been recently diagnosed with low T and take androgel for that but DR still on the fence about it working. Just had more lab work Monday and expecting a call tomorrow with results.  

  I do see an oncologist in the Annapolis area ( very skilled, good demeanor) and just started seeing a Nephrologist today ( also very professional and good demeanor).  I'm scheduled for more tests ( ct scans, MRI, sonogram and multiple lab tests next two weeks.)

  As I said, I'm so tired of not feeling well. I've got two very sports oreinted younger boys wearing the old man out. I'm getting to the point of telling them we need to expand our networking with others or they will have to back off the activities.  I really don't want to deprive them these experiences as it has helped turn them into fine, outstanding young men. 

   I have not felt well  at all since surgery. Drastically changed my life style,strength and overall abilities to live the lifestyle we once had. The hardest issue now is severe hot flashes and general body overheating,sweats.   Sometimes stops me in my tracks!  It's also affecting me mentally, very easy to get depressed, I just sleep plugging along so I don't fall into a deep depression.

I'll check the website you mentioned and if you have any advice or suggestions I'm all ears...

   Thanks again,   Doug

NanoSecond's picture
NanoSecond
Posts: 560
Joined: Oct 2012

You did not mention if you have had a full body nuclear bone scan recently (or any other test to see if you might have developed bone mets).  Similarly, any MRI of the brain?

Those night sweats sound just a bit suspicious - pointing to some sort of cancer-related phenomena.

Of course I am assuming that all your blood work is all looking normal - especially your Thyroid function (mentioned by others here too) and calcium levels.

Hdoneill
Posts: 6
Joined: Aug 2013

Thanks again,  yes I had a full bone scan after surgery to look for bone mets. None were found.  I've been told I was cancer free, all surgically removed. I questioned the Uroligist/surgeon as all information I researched stated kidney and gland should have been removed. He stated he would have done same procedure to himself and feels confident all cancer cells are removed.  All my blood tests appear normal,  multiple tests from multiple Drs. ( oncologist, nephrologists and internal medicine) never show abnormalities other than low T.  All post surgical contrating CT scans, lung x rays and contrasting MRI all appear normal too.I'm assuming thyroid functions have been tested, drawing a blank at the moment. I will ask this week when I see Ortho working with me also( she found tumor) (still have hip and back pains, spinal stenosis ). 

    As mentioned its very depressing to never have energy and the sweats are horrible!

      Don't want to sound like A whiner, just wondering if others had same problems and what treatments helped 

Thanks again. Doug

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

Sick and tired of being sick and tired...... me too. I had my left kidney removed last April 9. I don't know what your Dr has said, but both my kidney surgeon and oncologist remind me that the sweats,  fevers, and lethargic feelings are consistant with kidney cancer. When they find the right drug for me, they say I should start feeling better as tumors are shrinking.

The reason I went into see a Dr in the first place was because of fevers and sweats at night. I am stage 4 with mets in lungs, and liver. So I guess until the treatments really kick in, I'll just hang in there. 

You should tell your oncologist about the sweats, as that is not what they want to hear. 

 

Hdoneill
Posts: 6
Joined: Aug 2013

Thank you,  All my DRs , oncologist, urologist and Nephrologist know of my concerns. My Nephrologist tells me my kidney wouldn't cause the sweats/hot flashes...    Sounds conflicting to your DRs advice.  None of them have given me a definitive answer of why I'm feeling so bad.   My wife tells me this may be the best I will feel.  That's a very drastic lifestyle change for me and is becoming depressing.

   Thanks so much for the support.  Much appreciated, if you find that magic wand that makes you feel better wave it my way! ! ! 

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

I had my rt nephrectomy 4 months ago.  I've also been experiencing horrible sweats!  Mostly my head!!! Hair gets soaked and drips...also still exhausted.  My dr told me I'm still anemic because my lft kidney hasn't yet taken up the slack.  I'm very, very tired of feeling so tired all the time.  My pulse rate remains way elevated despite my BP being pretty much under control, and it scares me when I can SEE my heart pounding when I look down at my chest.  Both flanks still painful, as is my lower back.  I sure will be grateful when I can cook a meal or vacuum the floors or take a shower without sounding like a horse that's just run the Belmont! LOL

My dr says the hard to breathe feeling is because I'm so low on red blood cells, which are mfg in the kidneys, and which carry oxygen.  Kind of a catch 22 there, isn't it?  It's gotta get better....or I'll just have to pitch a fit and stomp my feet!  Do you suppose that will help? :0). In the meantime, I'll just go sit in the corner and suck my thumb...or go melt some glass and feel powerful!

 

rainsandpours's picture
rainsandpours
Posts: 103
Joined: Apr 2013

I get the sweeats too.  This summer has been unbearable to the point of me longing for a snowy winter day lol.  I wake up all night long soaked from head to toe, and multiple times a day overheated.  As an added bonus, I have no thyroid either- which makes me completely unable to regulate my body temperature ever.  Where I used to run chilly, I'm now a thermal blanket.  It's miserable.

 

Have you had your thyroid levels checked?  If your T4 is too low, you're be hyperthyroid and feel all those symptoms.  Especially the fatigue.

 

 

Hdoneill
Posts: 6
Joined: Aug 2013

Thank you,  yes they won't go away, frustrated Drs can't explain why. I will absolutely make sure thyroid has been tested( I believe it has).  

  Thanks again, glad to see I'm not crazy and others have Similar problems.   Doug

Hdoneill
Posts: 6
Joined: Aug 2013

I too stomped feet and screamed! ( didn't work!  LOL) 

   Yes ! For the first six months post surgery the sweats were horrible!  Soaked bread spreads, ruined pillows,etc...

 I just wrote it off as part of healing process, the major urinoma problems I had also didn't help. Problem I have now is its been a year and a half and same problems. Not quite as bad at night now, just all day long 3-4 times a week.

   did you have a partial or complete?   My partial was complicated and I had multiple ureters so when lower lobe was removed there was a piece of tissue not connected to any drainage system so any urine it produced just collected in the renal fascia. After that was drained many of the sweat symptoms disappeared for roughly 2-3 months. Then it returned and has never gone away. Ct and MRI scans verify no more urinoma exists but it is frustrating.

   Hang in there! If I get an answer I will pass it along...   Thanks again. Doug

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Everyone is different.  I had my Radical Nephrectomy in June 2012....I still have pain at the site.  I continued having night sweats, low energy, etc....but was initially "cancer free".  In Dec 2012, as part of a study, NIH discovered a met in my lung (solitary) on CT.  It was about 1.5 cm, and did not show up on x-ray three months early).  The Met was removed, and I have been NED since.  However, I continued with discomfort from the nephrectomy and the lung rescection. 

At my July scans the Urological Oncologists could not figure out why I was having the discomfort, which included crushing chest pains now coinciding with the sweats.  I took that to my primary Dr who examinined me, and concluded that I had GERD, and put me on prilosec.  That did not help.  Out of concern, I went to my cardilogist (I have a bad family history and other risk factors).  They found the cause:  a nearly complete blockage of the upper LAD atery (aka the widowmaker).  THe thing was stented.  Sweats and crushing pain is gone.  Still have discomert from the surgeries.  But, the energy level has returned to better than it has been in years.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

DHS, great post.. not all our ills are Cancer related, and good that you found the right Dr to fix you up..!

Ron

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

It would really suck

to drop dead two weeks after

the doctor said NED

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