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-   -   Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only. (https://her2support.org/vbulletin/showthread.php?t=62359)

JessicaV 12-13-2014 12:36 AM

Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
(Not sure if I am posting this in the right place, sorry if I got it wrong) I am really well in the mornings most days so long as I don't overdo it. But after 1pm the fatigue hits. I am sleepy for several days after 3wkly treatment, but the afternoon fatigue is ongoing. My oncologist is brilliant but she only sees me in the mornings when my fatigue is absent and says she sees no sign of chemobrain or fatigue. But I am still blown away most days as the fatigue knocks me down and drowns me early to mid-afternoon. I hate how little I get done each day, how I can only keep up with one thing out of the list of house, garden, finances, insurance battle, staying mellow, and then I lose hold of the one thing I was managing ok and then everything collapses into chaos and I can't see my way to return to work as a psychologist yet but the money is running low. I worry that it may mean I have brain or liver mets. I began with T2.2cm plus 6cm DCIS, N0,M0, ER-, PgR-, HER2+ in Jan 2014, had L Mastectomy 6days later and then began TCH a month after that. I know I am really lucky and getting good treatment, but when will this fatigue go away? What can I do to reduce it? What causes it? I thought once I went of Docetaxel and Carboplatin it would fade fast in a matter of weeks, but it hasn't. Any advice would be appreciated.

rhondalea 12-13-2014 05:52 AM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
Oncologists are notoriously bad at identifying chemobrain, and my own experience is that they're not helpful with the fatigue that goes with it. The standard answer is "exercise."

But what you've described is cognitive fatigue, and it will make you tired all over. For some of us, it lasts long than others. I think the stats are skewed, however, and more of us are felled by this than are counted. My neuropsychologist said that neurosurgeons take the position "You can walk, you can talk. Go out and live your life." She has now added oncologists to this list. Unfortunately for their pat theory, brain injury from chemo is effectively the same as traumatic brain injury, whether they like it or not.

There's some useful information in this thread I started after a long absence from this board because of chemobrain/fatigue.

http://www.her2support.org/vbulletin...ad.php?t=62041

Here's a link to the book my neuropsychologist gave me, along with a link to the PDF I stuck in my dropbox for easy download. (The download from the site is in Word, which is fine for those who have it, but not so much for those who don't.)

http://tbiguide.com/

https://www.dropbox.com/s/5g97u6wd99...Guide.pdf?dl=0

Also, see this blog. Idelle is a member here. You'll find information in the blog as well as a link to purchase her her book, and it's very helpful.

http://yourbrainafterchemo.blogspot.com/

Another helpful resource is Shelli Kessler's book:

http://www.amazon.com/Improving-Cogn.../dp/1490367721

Here's a PDF of the NCCN Guidelines for Survivorship which includes what oncologists are supposed to be doing but don't. Antidepressants are the new valium. Doctors seem to need a pill to hand out when they don't know what else to do, and antidepressants are the flavor of the decade. On the other hand, if you're not on tamoxifen, Wellbutrin just might work. If you are on tamoxifen, Effexor might be useful, but only at the higher doses. (Serotonin is not the problem; norepinephrine and, to a lesser extent, dopamine are what need to be addressed.)

https://www.dropbox.com/s/ecz1amnacd...itive.pdf?dl=0

You could try emphasizing to your oncologist that this is affecting your quality of life and your ability to support yourself, and maybe it will light a fire. It didn't work for me, but you never know.

Just remember to stop pushing yourself to perform at the same level as before. Your brain needs time to heal, and if you push too hard, you'll set yourself back even further.

Also remember that you're most definitely not alone.

JessicaV 12-16-2014 07:35 AM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
Hi, thanks so much, this is very helpful
Jessica

Bellaokc 03-28-2015 11:43 AM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
Glad I found this thread! I finished Herceptin September 2014 and still suffer from pain and fatigue almost daily.
Thank you ladies :-)

Nurse4u2day 03-28-2015 10:31 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I still get tired easily. It seems that the tiredness just lingers. I just finished herceptin JANUARY 2015 and had my Diep surgery 7 weeks ago ( 11 hour surgery) so hoping after chemo, radiation and 5 total surgeries all with in 16 months has something to do with it.
What I have learned to do is small chorewith an hour break in between each chore. For instance do dishes, take an hour break then do a load of laundry and take an hour break.
Baby steps and hope is what we all need...with out hope is just sadness and despair so hope it is!

JessicaV 03-28-2015 11:40 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I find one of the hardest things with fatigue is that I only briefly each day am rested enough to have the capacity to see the "big picture" or the entirety of anything. So I lose parts of it, lose time, start one thing, then next day start another and end up with nothing complete.

Heathcliff4 03-29-2015 07:48 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I finished Herceptin in November 2014 and was absolutely crushed with fatigue by that point (which was 13 months after my initial diagnosis of stage 11b idc). I had reconstruction in January 2015 and have only felt really good for the last couple of weeks. If you are taking tamoxifen or an AI, that really adds to the fatigue/pain and chemobrain (at least it did for me). I kept thinking, "WHY AM I STILL SO TIRED??" It was making me insane, really. I even called my nurse and asked if she thought I had liver mets because I was so exhausted all the time.

My oncologist admits that even though Herceptin isn't "supposed" to make you exhausted, it absolutely does. If you think about the fact that you have to have regular muga studies of your heart, how could it not??

I decided to stop taking tamoxifen and then Exemestane because the chemobrain was too severe for me. I stopped just as I finished my last Herceptin. My issues have improved probably 80%.

Hang in there. I gets significantly better and you aren't crazy for feeling so exhausted.

Kathryn

Carol Ann 03-30-2015 09:45 AM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I was exhausted too on Herceptin and it has taken a few months since I have finished to really begin to feel more energetic. Herceptin has a half life of 25 days, so there is still, as you receive it every 3 weeks, half a dose left when you get the next one. Bottom line is it takes a LONG time for it to work itself out of your system when you're done the year.

Not that that is a bad thing overall ... I figure it is good to have some floating around attacking any stray HER2 +++ cell that might be hiding somewhere .... but yes, it is still there to blitz your energy level, too.

I started walking indoors with Leslie Sansone walk dvds after Christmas and a month after finishing Herceptin-- much easier on my sore/neuropathy feet -- and she has one dvd that has 10 ten minute walks. It has really helped me build my stamina a little at a time. If I get too tired, I stop and try again the next day.

So, like kathryn above, I finished Herceptin in Nov 2014 and I'm just now starting to feel really like myself again.

Hang in there, it will get better!

Carol Ann

Lucy 03-30-2015 05:07 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I had 3 months where I was only on herceptin and I felt better than I have in a LONG time. I cooked up a storm (I'm still eating off the individual portions I froze months ago) and did things I hadn't felt like doing since I started treatment. Then I started the hormone therapy and went back to work within a matter of days. The fatigue that followed was because I'd been off work for so long, or so I thought. Two months ago I went back on short term disability and I'm still always tired. I was referred to the fatigue clinic at my treating hospital and finally (after 8+ weeks!) saw them today. Their advice was exercise, because of course that heals all. Their second option was drugs, which I was told were not FDA approved for cancer patients. Lastly, they suggested I participate in a sleep study because I'm obviously (my eyes are rolling as I type that) not sleeping well, despite sleeping 8-9 hours a night and napping during the day because I'm so tired.

She did say that the hormone treatment was making matters worse and said once I went off them that things should get some better. I only have 4-3/4 years left to go . . . .

I guess the bottom line here is that everyone is different and the experience will be different. I don't think the herceptin had an impact on me but it sounds like it has others. I was hoping it was just the hormone therapy but Jessica isn't getting that and she's still fatigued. The differences in everyone is what makes it so hard to treat, unfortunately.

It's a shame that the thing we all have in common couldn't be that we were all healthy and independently wealthy. What say we work on that . . . who's with me? :)

Christine R 04-01-2015 12:42 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I had a ton of energy thru my 5th round of the cocktail which included Herceptin. Then the platelets fell and I couldn't make it to watch the 7:30 pm Wheel of Fortune. My husband was shocked. Even after the platelets came back up, I'm still kinda tired so I avoid hitting the bed anytime before 9 or nothing gets done. Hate waking up to the dinner dishes in the sink!!!
I never thought it was the Herceptin, and even if it is, it's saving my life so who am I to complain?
Assuming once I start radiation I'll be even more tired.
And yes, my onc also told me to exercise to combat fatigue!! I'm right on it, doc!

IrvineFriend 04-01-2015 10:42 PM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
I was an extremely healthy 1/2 marathon runner and since chemo in 2013 can't seem to get back to any level of fitness. I'm wondering if there is a successful treatment for the mental side that we'd all need to get back to our old selves. I truly don't think old age hits in less than two years. I work in a HIGHLY technical field (cancer research and drug development) and keep thinking 'what can I bring to help things along". It's frustrating, I'm suffering with everyone, while working in a field to cure this disease.

If anyone has some great tips for staying on top of job tasks, I'd love to hear from you. I couldn't find my car in a shopping center tonight and it's been over a year and I'm just 50. Feel like I need to be tested for dimentia.

-Julie

Christine R 04-02-2015 05:34 AM

Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.
 
Wow, I regularly cannot find my car in lots but I also don't remember that this is a problem so I should take a photo with my phone of some landmark in the lot.

I hate to say it but I'm told that turning 50 plays a huge part in the mental acuity game. B12 is supposed to be extremely helpful--I usually forget to take it.

Also, with the decrease of estrogen production, so many elements fall apart. It's the whole menopause issue and why so many women have such a hard time.

I'm in perimenopause and my ob/gyn said--or was it the onc, can't remember--that the ovaries go into a sort of last-ditch overproduction of estrogen before the "end."

As you mentioned research, I, too would like to see some effort to help us return to our old selves. Maybe I'll reach out to the gang at Genentech/Hoffmann LaRoche--my wonderful sponsors--and see if they've got something in the works.

If I remember...


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