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Fatigue

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Did/does anyone diagnosed with rcc have extreme fatigue?? For the past 3 mths (before even being diagnosed) I have been completely exhausted. Not a normal stressed or lazy tired.... I mean an "absolutely cannot stay awake" tired. I am not a coffee person, but I now have caffeine every day to try to help and it doesn't even work!!! I also read you can have low iron due to rcc. I had it checked in June and my iron level is only a 5. I am sure this has something to do with it. Thanks!!!!

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

Looking back.......about a year before my wife was diagnosed she too was extremely tired. More so the last few months before but we thought back and can pinpoint about a year bac. She would literally fall sound asleep on the couch at night by 8:30 most nights. 

We just thought she was working hard and being in her mid 40s that she was slowing down. We should known but a cancer diagnosis was the farthest thing from our minds.

since having the "Demon" out she has more energy and can make it to a normal bed time now. Lol

it took a few months post surgery tho but she gets better every day.

hope you get some relief soon.

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

I don't know what your situation is as to partial or complete surgery or if you're on any sort of chemo.  I can relate my experience.  I had a complete removal of my right kidney and assorted other parts.  Before the surgery (for months before) I was often fatigued.  After surgery, I slept the afternoons away -- or at least part of them.  Now, four plus years later, I still tire easily.  However, I have been on chemo almost that entire time, so I attribute my current problem with fatigue to the drugs. 

This fatigue thing is another thing that's thrown at us as we learn to live with the disease and it's after-effects.

Hope you find a way to deal with the symptom.

 

Dutch

 

Optimisticgirl's picture
Optimisticgirl
Posts: 81
Joined: Aug 2017

My husband had been feeling exhausted after coming home from work in evenings. We chalked it up to being 62 and a job he rather dreaded. He would come home and do a deep breath/sigh and I assumed it was his way of saying he was glad to be home. Would then sit in recliner and nap often until shower and bedtime.  He had begun really talking retirement in the last year because he felt so "old". Lab work always came back fine, cancer did not enter our thoughts.  He had full nephrectomy of right kidney on Sept 6 for ccrcc and still complains of fatigue on occasion but not like it was presurgery. Also noticed more pink in his cheeks since surgery. He had been looking pale and as before chalked it up to age. We are northerners and heading to Florida at the end of this month for a well deserved vacation and hope to get some sun, fun and relaxation in.  Wishing you the best of luck!

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I had days where I would be exhausted but not many.  I worked everyday and went to the gym after work.  Since my surgery I do find myself tiring easily. I am chalking that up to my kidney healing itself.  This Wednesday will be 4 weeks since surgery.  I am back at work onsite today but have been working from home for the last 3 weeks.  

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Thank you everyone!!! As I sit here it is even difficult to keep my eyes open. All of a sudden I just shut down and absolutely have to sleep. I see the surgeon/oncologist tomorrow. My urologist said it should be a partial nephrectomy I will have. I guess I will know by this time tomorrow!!! I cannot wait to have energy again. It bothers me bc I am used to being a super active and healthy person. I wish you all the best for your recoveries and futures!!!!!

meljg
Posts: 1
Joined: Oct 2017

Have you had your thyroid levels checked? My husband is Stage IV and the treatment (Sutent) has resulted in a significant drop in his thyroid levels which is contributing to his fatigue. He has felt quite a bit better now they are sorting that out. Not sure whether you've been having any treatment prior to surgery but there are quite a few medications that can mess with your thyroid. Might be worth getting it checked out. Good luck with your surgery and recovery.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Thank you! Just had bloodwork in July and thyroid is all good. My iron is quite low. I have had that happen before, but this fatigue is different :-(

Bellafelice
Posts: 57
Joined: Sep 2008

In terms of your fatique question, my hubby was extremely tired for at least 6 months before he was diagnosed with kidney cancer. He was always sleeping after work, to the point I joked that he looked like he was in a retirement home all the time (at age 56). After his nephrectomy the color came back to his face overnight and when he was healed from the surgery his energy returned. Fast forward from 2008 to 20017 when he had mets for the first time-extreme tiredness again before we found out the cancer reared its ugly head again. Now he is on 800 mg of Votrient-and he is responding to it-but he still has bouts of fatique intermingled with times he feels extremely energetic.

Hope this info helps and write anytime with any other questions. Everyone is here for you on this board. You may also want to check out Smart Patients-they have excellent people and posts on all areas of kidney cancer!

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

WOW Annisa, iron is at a 5? No wonder you are so fatigued. Look up foods that build iron and SLOW FE (non constipating) is usually recommended. What is your doctor telling you? 

I had to demand to have Iron checked following my nephrectomy. My surgeon didn't think it would be a problem, but turned out I was iron deficient. Also make sure your diet is rich in greens and other nutrients to build you up for this surgery. 

Many of the medicaitons, used for general anesthesia are strong and take awhile to leave our system. Plus then you'll be on opiates for awhile. Make sure you use ice packs over incisions to reduce swelling/edema which is natural after any surgery. It will reduce your need to need opiates for long. 

I also recommend using a lumbar, velcro wrap, used for back support to hold those aching muscles/tissues as you recovery. It helped me get up, and out of a chair or bed. I even wore it to bed. I place ice packs inside of it, but over underwear to help reduce swelling. It helped a lot! Therefore I didn't need opiates for very long.

Healing hugs, 

Jan

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

He said it could def be caused by the tumor. He said we will know for sure once it is out and if my iron starts to go back up. What an awful feeling!! Surgery is booked for Nov.7th! He is not 100% sure yet if he will take part or all of my kidney. I have read comments on using a lumbar wrap. We actually have one!!! Thank you for all of the info!!!!

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Why on earth would ANY doctor make you wait till AFTER surgery to build up your iron? It could only be worse then. Slow FE is non-constipating, over the counter. Consult with your primary then, but please, do not wait till after surgery a you do have some blood loss. Geesh..

Let me know what your primary says ok?

Hugs, Jan

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

The one dr I saw did not even consider 5 being low!!!!

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Some of us get opiates for a while after surgery, some not. So don't feel bad if you don't or special if you do. Just make sure you've got a plan for keeping your pain under control before you leave the hospital (and a plan for what to do if THAT plan isn't adequate). Lots of TLCs - definitely!

Rockspin
Posts: 77
Joined: Aug 2017

I too had fatigue before being diagnosed. It wasn't normal tired but weary. Since surgery 3 weeks ago I do feel so much better. Also before surgery I was. Instantly having to empty my bladder and that has also stopped. I hope this good feeling lasts.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

after neph and anemia has been discussed by many. I don't remember the details but fe supplements were usually recommended.

APny's picture
APny
Posts: 1948
Joined: Mar 2014

Yes, I'm taking slo FE 2x a day. I'm usually iron deficient but after surgery it really dropped. And my hemoglobin went to six. So don't wait till after; discuss it with your physician and start taking it if approved.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 241
Joined: Apr 2017

I hadn't really thought about it, but looking back, I was fatigued a lot before diagnosis and nephrectomy. I was just chalking it up to commuting 90 minutes each way into NYC, which is enough to wear anyone out. But in retrospect, I think I was unusually tired. By three months post-surgery, my energy was MUCH better.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

I hope mine comes back too!!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

That's what those little b***ards are all about. 

Donna~

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

BWAHAHAHAHAHAHA.... Donna has me rolling... now I will call my tumor that jezebel *******!!!  I have been refering to it as Jezebel.

Mighty Frog's picture
Mighty Frog
Posts: 139
Joined: Jul 2017

I started to urine blood (alot) 2 weeks after my surgical. From that day onwards, i was very fatigued and sleep almost whole day. My doctor just give a me iron supplement to boost up my iron and to increase my red bloood cell....... Things get better after one week plus.... I now feel alot better and active again.....

Kainin
Posts: 1
Joined: Nov 2017

My father is on Pazopanib for his kidney cancer, his biggest complaint is fatigue. My sister asked the oncologist if he could have a Vitamin B shot, he goes for one every two weeks and has a lot more energy. Hope this helps.

Rockspin
Posts: 77
Joined: Aug 2017

I also had extreme fatigue before my diagnoses but I had Hashimotos (thyroid disease) so I assumed it was from that boy was I wrong!

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Great idea with the B12!

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Did you consult with your Primary doc? 5 is not good at all! 

And yes, it could be other things too. Most good docs run a battery of blood tests to get to the bottom of this.

Have you started Slow FE? Its sold at any drug store.

Let me know!

Geez..

Hugs, Jan

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

I have not talked with him about it yet. I was taking iron pills but have zero patience lol. I will talk with someone for sure.

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

I have been really tired. For no good reason. The kind of tired I got when I was first pregnant and the baby was a mere speck, where you came home and laid down on the bed at 5pm and went to sleep.  I wonder if that was "Kev" growing?    The weird thing i have had is hot flushes at night and somtimes in the daytime.   I am a woman of the right age to be starting to get hot flushes but I have also read it might be related to the kidney tumour.  Something to do with Kindeys regulating body temp.  Will be interesting to see if it goes away after the 9th. 

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Kev ahahaha. Mine is Timmy! Been dead tired since June/July. Oncologist said it def can be the tumor throwing out strange hormones. He said I will obviously know for sure once the tumor is out. Three days to go then surgery time!!!!!!!

Uncle John
Posts: 2
Joined: Dec 2017

Today marks my one month surgery anniversary.  8cm tumor, RCC stage 3 with sinus involvement.  Initial post surgical pain was from largest incision but more so from the CO2 they pumped into me to distend my stomach cavity.  The CO2 took a week to completely void itself from my system.  At it's highest pain level it was causing razor sharp stabs in my shoulders and the pain was a solid 9 on the richter scale. That's all behind me.  So is the oxycodone. 

My present post-operative concern is fatigue.  Even modest movement, say a slow walk around the block, wipes me out and I have to take a nap.  That's okay as I'm home recovering.  But in a couple more weeks I need to return to work.  I'm concerned that I won't be over the fatigue hump and will nod out at work.  I never expected laparoscopic surgery to result in fatigue whenever I expend energy.  Has anyone out there had a similar experience from a laparoscopic radical nephrectomy?

 

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

From what I have read, many people on here struggle(d) with fatigue.  I get tired more easily and find myself going to bed quite early most nights. I too will be returning to work the 1st week of January. I guess over time energy comes back. For some it took 8mths to 1 yr!!!!

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I briefly read through your posts and I saw that you had an iron level of 5.  That would certainly explain the fatigue.  Back in 2010, I had an abdominal condition called a sigmoid volvulous.  Essentaiily, a portion of my intestines twistd 540 degrees and shut themselves down.  Long story short, I had to have major emergency surgery to take out about 18 inches of my sigmoid colon and had the lovely experience of having to wear an ostomy bag for about 2-1/2 months.  My hemoglobin level during this fiasco went down to about 7 or 8 and my surgeon told me she wouldn't dare have me go through the "reconnection" surgery unless my hemoglobin went up substantially.  I was also severely underweight, so I had the enviable task of eating myself back up to a reasonable weight and a decent iron level.  I ended up eating a lot of meats of various kinds, having cream of wheat (very high in iron) a couple of times a day, and I drank three bottles of Ensure each day.  Yeah, I'm crazy, but I actually enjoyed the taste of the vanilla flavored Ensure that Costco sells.  Anyway, immediately after the initial operation, as I said, I had a hemoglobin reading in the mid-7's and my weight was about 140 (I'm 6'2" tall, so at 140 pounds, I disappeared when I turned in profile).  In about 8 weeks, given the diet I undertook, I got back to 180 pounds and a hemoglobin reading in the mid-12's.  After getting reconnected, I stablized at about 170-175 pounds and my hemoglobin is in the 13's now.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

I like Ensure too ahahahaha! I just had more bloodwork today so I will see where everything is at. Since the cancer has been removed my energy has come back! I do get tired more easily and when it hits....It is def bed time!! No question about it lol. I also like cream of wheat so that was a good idea too. Thanks!

Kidneybeans
Posts: 39
Joined: Dec 2017

I'm tired more often than not. I sleep much better at night than I did before my surgery on 10/12 but that doesn't seem to matter. 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Gosh this should not still be going on, right? Has any doctor treated your low iron levels?

And what few to no docs will tell you is that you can be deficient in NUTRIENTS~

I was lucky to have a specialized nutritionist, not dietician) who could find EXACTLY 

what I was deficient in, toxic in and how to correct it exactly just for me!

Hope you find out and feel better soon!

Jan

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

The fatigue is gone, but nausea has been with me 24/7 for 6 weeks now. I just posted something about my blood test results today. Maybe you have some thoughts???

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

  or plavicid. Can be bought otc. It takes a week but it helped me a lot.

Angiebby75's picture
Angiebby75
Posts: 190
Joined: Aug 2017

Annissa, my sister uses essential oils and she gave me some peppermint oil for my nausea and it has helped.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Thanks all!!!

greenbriergirl
Posts: 2
Joined: Dec 2017

My tumor was found in August after a raging bladder infection with a lot of blood sent me to the urologist. I had my surgery on November 8th. The plan was a partial but ended up having a total because of location of tumor and my kidney was slightly tilted. Anyway, for the last couple of years I always felt like a could lay down and go to sleep all the time. Now, even though I do get tired easily it seems to be a totally different kind of fatigue. It also seems as though I've had some changes (for the better) in my hair and nail growth. Has anyone else experienced this?

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Same story and timeline as mine!! The horrible fatigue is gone, but at the end of the day I am almost exhausted. Once I am done...I am out like a light lol. I only noticed my hair breaking a bit more. It usually grows pretty fast so I cannot say it is any different.

repaid
Posts: 17
Joined: Dec 2017

I also suffer from cronic fatigue. Was diagnosed with renal cancer ( chromophobe)in both kidneys in 2015. I had a parcial nephrectomy of the right  kidney in May of 2015 (was told would be about 3 hours and was in OR for 8 and a 1/2 hours). Have mri's every 3 months. Still cancer free in right kidney but left kidney  the cancer continues to grow.Said they don't want to do anything with  the left kidney until they absolutly have too in case it returns in my right kidney.Medical report says  cronic stage  3 rcc. I only take  meds (3 diferent inhalers for  copd as there are honeycomb cyst and holes in my lungs) and high bloodpressure med for secondary hypertension. I take care of my mother who is a cancer survivor from breast cancer and stage  4 non hodgekins lynphoma, and a few months ago had a stroke and now demetia. So I don't take any kind of pain meds as I must be alert to  care for her. I also had  total reversal shoulder replacement of the right  and left shoulders in 2014 which resulted in pemanent nerve damage in right arm.(constantly feels like it's asleep).Recently had mri for back and found that  I also have severe spinal stenosis in 3 separate areas in my spine for which  I had  surgery for  the one one area in my neck.The mri also showed I have a cyst in my brain posterior fossa which may be why I have  frequent severe haedaces.So yes I fight  fatigue every day and peolple just don't seem to get it.I do belive most of it is from the rcc as that's when it started.

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Repaid, so sorry for ALL you and your mother are going through. WOW! Enuff!

You'll both be in my thoughts and prayers.

May things start to improve for you!

hugs of healing and care!

Jan

repaid
Posts: 17
Joined: Dec 2017

 This morning I got a call from my sister that my nephew (age37) had just passed away.  Was battling stage 4 colon cancer. He is survied by his  3 young children. This is very sad and hard time for us . Thank you for your prayers as they are much needed and appreciated.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

I am so very sorry to hear all of this. I hope you are ok.

repaid
Posts: 17
Joined: Dec 2017

Thank you AnnissaP. I am thankfull for family support. We are  there for  each other. I do hope all is well with you also. It is nice to have a place  to go with other paople that are going through simmilar health issues. God bless.

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