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Old 12-13-2014, 12:36 AM   #1
JessicaV
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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.
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Old 12-13-2014, 05:52 AM   #2
rhondalea
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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.
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 12-16-2014, 07:35 AM   #3
JessicaV
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Re: Still severe afternoon fatigue daily after 4monthsTCH, 6months Herceptin only.

Hi, thanks so much, this is very helpful
Jessica
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Old 03-28-2015, 11:43 AM   #4
Bellaokc
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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 :-)
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Norma,

June 7, 2013: Age 43, mother of 2, had just celebrated 16th wedding anniversary June 6th
Dx Invasive Ductal Carcinoma:
ER-, PR-, HER2+++,
Stage IIb, 5 cm. tumor, grade 3
Benign lymph nodes.
June 26, 2013: Begin 4 Rounds of AC
Sept 19, 2013: Begin 12 weekly treatments of Taxol/Herceptin
Oct 22, 2013: Skipped a treatment because of a trip to the ER. Turned out to be a blood clot in the inferior vena cava….Started Coumadin (aka Warfarin)
Dec 12, 2013: Last treatment of TH
Dec 20, 2013: CAT scan and nuclear bone scans show NED. Yay! Chemo worked!
Jan 24, 2014: Bilateral mx w/expanders inserted; 10 Lymph Nodes removed on left side;Pathology report shows no trace of tumor was left after the chemo. More proof that the chemo worked!
Jan 30, 2014: Emergency surgery due to hematoma on the right side. Had a filter inserted to deal with blood clot that had developed in October.
Feb 2014: Begin Herceptin only treatments
Aug 29, 2014 Expanders OUT and implants IN
Sept 4, 2014 Last Herceptin treatment YAY!!
Oct 8, 2014 Port Removed
Dec 5, 2014 Nipple Reconstruction

Current Meds: Daily - 150 mg Effexor; 50 mg Tramadol for aches and pains caused by treatments
Occasional - 30mg Temazepam (Restoril) for insomnia ; 300mg Neurontin for nerve pain in left arm; 1 mg Lorazepam (Ativan) for anxiety;
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Old 03-28-2015, 10:31 PM   #5
Nurse4u2day
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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!
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11/13 Dx IDC left breast
11/13 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
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Old 03-28-2015, 11:40 PM   #6
JessicaV
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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.
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 03-29-2015, 07:48 PM   #7
Heathcliff4
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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
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Old 03-30-2015, 09:45 AM   #8
Carol Ann
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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
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 03-30-2015, 05:07 PM   #9
Lucy
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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?
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Old 04-01-2015, 12:42 PM   #10
Christine R
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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!
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Old 04-01-2015, 10:42 PM   #11
IrvineFriend
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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
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 04-02-2015, 05:34 AM   #12
Christine R
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Smile 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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