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Post-Treatment Fatigue

Post-Treatment Fatigue

Posted by WBCumm on Jan 27, 2019 8:42 pm

Is there something for me to be concerned about if my mental and physical fatigue persists - maybe even gets worse - 7 months after the end of my chemo and radiation treatments?

I'm in remission.  I had thought I was on the road to a full recovery.  I've spent the last few months taking it easy and being good to myself.  I've gone back to the gym, I've done a lot of walking and I've socialized.

But now I have only 3 weeks of Disability Leave left and I'm worried:  My recovery has stalled; sometimes it even feels like it's regressed.  My legs feel like rubber, my brain is fried and my overall stamina has diminished.  

Has this happened to anyone else?  What do doctors say about this kind of thing?  The doctors I've spoken to don't seem to understand what I'm telling them.

 

Re: Post-Treatment Fatigue

Posted by Brighty on Jan 27, 2019 8:49 pm

WBCumm‍  welcome to cancer connection!   Almost everyone on this site who has gone through  cancer treatment  will probably  tell you that fatigue  can persist  for months after treatment.     Do you mind if I ask what type of cancer  you were diagnosed  with?  That way I can connect  you with others who share the same experience  as you.   

Re: Post-Treatment Fatigue

Posted by WBCumm on Jan 27, 2019 9:02 pm

Thanks Brighty.  I had anal canal cancer.  Not too common, apparently, especially among men.

Re: Post-Treatment Fatigue

Posted by Kims1961 on Jan 27, 2019 9:24 pm

WBCumm‍   Sorry to hear you are still experiencing fatigue - mental and physical.  I'm attaching some info that indicates that although fatigue improves after radiation - it can last for several months. Your body has undergone significant trauma and it can take time to "rebound".

I have also found that cancer has affected my mental health - which has affected my energy level as well.  Depression can also have symptoms of fatigue so may be worth connecting with your family doctor about how you're doing.   Also seeing your doctor may help with disability.  Would you be able to get an extension?  If you have no choice but to return - talk to them about a graduated return to work - could you do a modified plan initially?

Keep us posted on how you're doing.

Kim

Re: Post-Treatment Fatigue

Posted by Brighty on Jan 27, 2019 9:40 pm

WBCumm‍  hi again .   I checked and I don't see any members with this type of cancer who have  been recently  active on the site .   I'm going to tag Lacey_adminCCS‍  and Lianne_adminCCS‍  who may be able to connect you.    

Re: Post-Treatment Fatigue

Posted by Birdwoman on Jan 28, 2019 10:43 am

Hi WBCumm‍ I am so sorry to hear of your ongoing struggles. I too am struggling and it has been 2.5 years since I finished treatment in 2016/09. I had serous uetrine cancer, very aggressive I was told, so I had 6 months of chemo and radiation. Did you have radiation in the pelvic area? I did and am wondering if it caused damage to my spine. As your cancer was in the lower body, yours too may have been affected.

I can't find any articles on this except one that compared hip replacements for patients radiated in that area to those that were not. They did not find an increase in the radiated patients. I can't seem to paste the title of this article into this post. Sorry.

But it does say that skeletal damage is possible and not enough research has been done and I guess we are the first large wave of survivors. They have kept us alive, but what now? I am waiting for a hip replacement, but am hoping to somehow fix my back so I can be strong enough to rehabilitate after surgery.

I would keep after your doctors, all of them, advocate for yourself, tell them it is urgent, insist on tests, especially as you are of working age. Keep after them until you find one that can help you.  Wishing you all the best!

 "Long-term survivors of cancer can develop adverse effects of the treatment. 60% of cancer patients survive for at least 5 years after diagnosis. Pelvic irradiation can cause bone damage in these long-term survivors, with increased risk of fracture and degeneration of the hip.
We did not find any statistically significantly higher risk of undergoing total hip replacement in patients with gynecological cancer who had had pelvic radiotherapy than in women with breast cancer who had not had pelvic radiotherapy.
After approximately 5 years, two-thirds of cancer patients are still alive (Sant et al. 2009). Research on late adverse effects in cancer survivors has gained increasing interest over the last decade. However, the main interest has been on secondary cancer events (Curtis et al. 2006), cardiovascular complications, and emotional problems (Meyerowitz et al. 2008). The relationship between cancer, skeletal disorders, and treatment has rarely been investigated. Skeletal adverse effects of irradiation include cell death, cellular injury, and abnormal bone repair—although the underlying mechanisms are not fully understood (Yurut-Caloglu et al. 2010).
Published online 2014 Nov 19. doi: 10.3109/17453674.2014.963784
PMCID: PMC4259020
PMID: 25238432

 

Re: Post-Treatment Fatigue

Posted by ACH2015 on Jan 28, 2019 3:59 pm

WBCumm‍ 

I agree with the suggestions already stated.

I hope you are in a position for an extension of your Disability Leave as suggested by Kims1961‍, talk with your doctor re their support of your situation.Being 7 months out from chemo and radiation is not a very long period of time my friend.

I am over 2 years out from chemotherapy, and 20 months out from radiation myself. I do not believe I have fully recovered from either treatment,  mentally or physically. Improvement comes in waves and ebbs and flows for me. Great one day - fried the next. Many doctors are not great at filling in the blanks on the duration of long and short term effects. We are all different, and will regain ourselves at different rates and levels. Some things we have endured will have life long lasting effects.

Any chance you could ease back into work slowly - part time - a few hours per day? That is generally what is recommended in many return to work cases.

It is a shock mentally and physically to get back in the saddle again after being away with treatments and recovery. That is a lot of work people (and employers) don't think of and necessarily understand like we patients do.

Keep well - you're still recovering.

ACH2015 - Andy.

Re: Post-Treatment Fatigue

Posted by Kims1961 on Jan 28, 2019 4:18 pm

WBCumm‍ ....Oops....sorry I see my attachments someone disappeared.

Here is some other info that might help:

http://www.cancer.ca/en/cancer-information/cancer-journey/life-after-cancer/late-and-long-term-effects-of-treatment/?region=on

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fatigue/what-is-cancer-related-fatigue.html

Hope today is better.  Kim

Re: Post-Treatment Fatigue

Posted by WBCumm on Jan 28, 2019 10:36 pm

Thank you all for the input.  It's appreciated more than you know.  Right now the challenge is to explain to my doctors what is going on with me in such a way that they're able to help.  Your words and the linked articles give me the vocabulary I need to take this further.  Again, thanks so much.

Re: Post-Treatment Fatigue

Posted by Lacey_adminCCS on Jan 29, 2019 10:48 am

WBCumm‍ 

So glad you feel more prepared for your appointment. Cancer can feel like a whole new language.

Keep us posted and reach out anytime

Lacey

Re: Post-Treatment Fatigue

Posted by WBCumm on Mar 28, 2019 12:04 am

Several months have passed since I checked in here to comment on the fatigue that just wouldn't quit.  

After a stressful struggle getting all my cards in order, my disability leave from work was extended by 6 weeks, followed by a six-week gradual return.  On April 1 I'll be back to full-time employment.  Over the course of several months there were a couple of false starts - I had tried to be Superman and I failed - but now I'm returning confidently.  

I still don't have the energy I did a year ago and I probably never will.  But I can handle it.  I'm alive.  The fog has lifted (mostly).  I can do this.

I'm eternally grateful to the support systems in place, including this one.  Thank you.  

Brock C.

Re: Post-Treatment Fatigue

Posted by ACH2015 on Mar 28, 2019 8:25 am

WBCumm‍ 

Brock,

There is no limit to support, so keep in touch as you continue to move through this experience. I wish you all the best. I, on the other hand, am pulling the plug on my career mid April, A tough, but best case scenario decision for me.

I want to pass something I discovered onto you about Post Treatment Fatigue. This may help explain your lack of energy.

I have mentioned for some time to my medical team that I too suffer from ongoing lack of stamina and fatigue - well after many major treatments.

One of my surgeon's suggested the cause may be due to my own adrenal and thyroid glands not having reached their ability to kick back in after I was on steroids for so long. In my case apparently because the steroids artificially take over for your body's natural system, it can take an extremely long time for these systems to kick back into action once you stop taking steroids. My surgeon suggested upwards of 6 to 8 months.

Just something to ask your medical team about. Many drugs can affect many of our own normal bodily functions. I've done blood work and will continue to do so for monitoring thyroid function etc...

I don't think my systems have yet kicked back in, and I am just taking it one day at a time. Frustrating yes - but we have to keep moving forward as best we can.

Keep well

ACH2015



 

Re: Post-Treatment Fatigue

Posted by BAMason on Mar 29, 2019 8:57 am

Hello WB,
I am now 7 years cancer free. I had a different kind of cancer but had both radiation, chemo and follow up drugs for 5 years. I’ve since developed Rheumatoid Arthritis.. apparently autoimmune diseases are not uncommon after such aggressive treatment. I’m sorry you are feeling so poorly. The other comments are right on the money. As we have truly hit our bodies hard with treatment, it takes time for it to rebuild its stamina. I still have odd days that put me on the couch for an extended nap but just know, with time, you get stronger and stronger but you will have a new normal. Be patient, listen to your body. Diet is VERY important to give it what it needs to rebuild. Sugars, alcohol while yummy can set you back, so try to minimize or eliminate what is possible. Wishing you continued strength, inner peace and joy in small victories everyday! 

Re: Post-Treatment Fatigue

Posted by Lee Ellen on Mar 29, 2019 9:43 pm

My experiments on myself over the years I've battled lung cancer have led me to think that much of the extreme fatigue that follows in the first few days after chemotherapy is caused by the anti-nausea drugs that are prescribed; extreme sleepiness is among the side-effects of those drugs. When I've kept the Rx pills to just one at bedtime, and have used high doses of cannabis during the rest of the day, I've had no significant short-term problems with fatigue. In my experience, a less intense fatigue takes over a few weeks after chemo ends, and there's nothing that can be done except to wait it out.

 

Re: Post-Treatment Fatigue

Posted by WBCumm on Apr 30, 2019 12:59 am

It's been three months since I put the word out here about my on-going fatigue.  Things haven't gotten a lot better in terms of my tiredness but - and this is a very big but - now I know it's normal and now I know what I can do about it.  

Going back to the gym after a lengthy hiatus wasn't difficult - I'd been a gym rat for almost 40 years before I was diagnosed with cancer (I'm 59 now).  But working out was frustrating and depressing.  I couldn't do what I used to and I got little satisfaction from doing what I could manage.

The Fatigue Video posted here was life-changing for me. 

Now I realize that going to the gym is part of my post-cancer treatment.  It shifted from being part of the problem to being part of my solution. For me, it's as simple as changing my attitude.

Much gratitude.
 

Re: Post-Treatment Fatigue

Posted by Lacey_adminCCS on Apr 30, 2019 9:27 am

WBCumm‍ 

SO glad the video was helpful 😊

Sometimes we need to take a moment and remember how far we have come and the progress we have made in the journey to recovery and finding the new normal! Glad to hear you are putting strategies in place.

Keep going forward,
Lacey