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Old 07-31-2015, 06:12 PM   #1
JessicaV
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Join Date: Apr 2014
Posts: 206
Fatigue, and the Cancer Card.

Forgive the rant I am posting here, but I am just feeling really stressed, low and exhausted.

In an argument over a confusion about plans for getting takeaways, I said "So who has been upset and messed around most by this problem", and my husband replied "And who's got cancer then?"

He then went on to say that I use the cancer card a lot in inappropriate ways, eg telling the man who cut off the gas without warning that I need my hotwater to stay connected because I am not too well because I am recovering from cancer treatment. And like accepting the wheelchair offered by the airline when I only asked for priority boarding(I was boarding a 4hr flight alone in the evening and utterly exhausted beyond belief and they could see it and I couldn't). And like asking him to take me out for dinner because we had no gas to cook with and I was still recovering from my late flight. Takeaways from 2 different places were his choice and I was too tired to argue further.

I still have severe cognitive and physical fatigue, but my doctor has insisted that I should work two days a week in my really exhausting job (though normally I love it) ie as a psychologist, because this is the back-to-work programme she told the insurance company was in place. So I am too tired to do any of the things I used to do to manage the fatigue, like meditation, pottery class, morning drawing, etc. And our finances are at a point where costs come out of our offset account so the mortgage goes up but a man will get away with $1500 unless I fight for it. Any income I make reduces the small amount of insurance I get paid. And I am in the middle of a once-only training that is very important to me, yet arduous and some of the people are really difficult, and I have to do a return 4 or 5 hour flight each month. And the backyard is getting really overgrown with blackberry and may start to house snakes from the wild reserve next door if I don't clear it (and this is my job because it is my garden)

I have a lovely daughter who walks with me almost every day who says she is worried about how much more fatigued I am now I am working again, that I take things to heart because of it, and she thinks I should be asking for more help because of my cancer-related fatigue, not less, and that I am not being manipulative. She does tell me painful truths when she needs to so I don't think she is just being nice.

I don't like being judged my my husband and told I am lying about the ongoing impact of my treatment. I really am close to breaking point. I am trying to make him understand but he sticks to his view. It seems that he doesn't see me or understand me at all. And what he does see is a somewhat despicable, manipulative person. Which feels like he is adding insult to injury.

How do you cope with this level of fatigue and still have a job, relationship, cope with the gas being cutoff, people billing you for $1100 with no cause, etc. It is not really a question of is it valid to use the cancer card, it is a question of how do I get through the next day. Please advise. I think some of you get it.
__________________
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.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 07-31-2015, 07:23 PM   #2
KathyT
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Join Date: Mar 2014
Location: Glendale, AZ
Posts: 210
Re: Fatigue, and the Cancer Card.

Jessica,
I am so sorry you are having trouble. I also struggle with fatigue, have no energy or motivation to exercise even though I know it is the best thing for me. I'm sorry you aren't getting support from your husband, it's really hard to do this alone...
This journey is filled with so many ups and downs.....I wish I could just do the treatment(chemo, radiation, and surgery) then it all be over....but that's not the case...
This is the best place to vent and let it all out. Hope it gives you some comfort knowing your not alone in the way your feeling.

Kathy
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
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Old 08-01-2015, 03:46 AM   #3
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: Fatigue, and the Cancer Card.

Hi, thanks for your kind support.
Jessica
__________________
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.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 08-01-2015, 05:41 AM   #4
europa
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Join Date: Jan 2012
Posts: 360
Re: Fatigue, and the Cancer Card.

I found myself using the cancer card to explain the radical awakening I was undergoing. Cancer was the best thing that ever could of happened to me. Seriously. Even though it can come back and kill me, I am grateful because I live so differently now, so fully. However, during this transformation and in the midst of Taxol I found that I had little to no patience because I was drained...all the time. I would cut people off because I didn't have the energy to hear them out. And I would use cancer as the excuse. Actually cancer became my excuse for everything. I became selfish and you know what, I am glad I did. For once in my life I thought about me and only me. My partner and I were not getting along to say the least and so one day I came home from treatment, sat next to him on the coach and said: listen, I have cancer, and treamtent is taking over my life. You add to the stress. So you have to leave. It was tough, but it saved me. I also have used the cancer card to get ahead of the line, because I was exhausted and standing for long periods of time was impossible. I used the cancer card once and got upgraded to first class, that was fun. But since leaving treatment and being NED I have noticed that I don't use the card anymore. It's not for me to use anymore because others, like you need to use it. This is your time to be a bit selfish and if someone comments that you are using it too much....just let it roll off your mind. They really don't know what you are feeling inside, so use it. Because of cancer I now have boundaries and take great care of myself and my sould to make sure I am as happy and at peace as much as possible. And sometimes I remind myself that I matter and that I developed cancer and went through a horrible treatment to be here, to be present. So I use the cancer card on myself, to remind myself when I need reminders of how blessed I am to wake up every single day.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 08-01-2015, 05:58 AM   #5
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Fatigue, and the Cancer Card.

I bounced back rather well from treatment but this spring went on a slow decline. I think I was unusual but I was doing targeted nutrition which helped immensely -- based on blood labs by my naturopathic oncologist and additional research into the adrenal and liver basis of my disease on my own.

I have read of others who had a very rough go with TCHP, including a woman my age (mid-40s) who almost died. How our bodies respond is do individual.

I'm sorry you feel pushed to work once again. I was working too but I think I can mostly put that to rest now except for small consulting projects.

I guess I would say to you to get more blood labs done and see if you can help heal your body more. Here are some things to check:
Serum zinc
Ceruloplasim
RBC magnesium
Serum magnesium
Ferritin
Vit D3
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 08-01-2015, 09:45 PM   #6
BonnieR
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Join Date: Jun 2007
Posts: 2,210
Re: Fatigue, and the Cancer Card.

As far as I'm concerned you can "play the cancer card" for as long as you feel the need. Nobody would choose to have to do so in the first place!
You have a big list of concerns and burdens that are overwhelming you in your fatigued state
I remember when my oncologist didn't think I warranted a temporary handicapped parking permit. But I knew how exhausted I would get just walking across a larger parking lot and I was angry that she didn't appreciate that aspect of treatment. ( I got the permit from my GP)
Your husband might be having his own issues and is taking out his fears/ frustrations inappropriately on you. I think sometimes people feel we should bounce back faster than is realistic. Maybe he is worried that you're not all "cured" and your old self
And for Gods sake, somebody better cut that yard before the snakes invade!!
Keep the faith
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-04-2015, 06:52 AM   #7
Donna H
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Join Date: May 2014
Posts: 277
Re: Fatigue, and the Cancer Card.

Having cancer and going thru treatment for it is the absolute most appropriate time to be selfish. Do what you need to do to get thru it. 2 saying comes to mind - the squeaky wheel gets the oil and ask for forgiveness, not permission.
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Old 08-04-2015, 08:14 AM   #8
ariana
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Join Date: Jun 2014
Posts: 162
Re: Fatigue, and the Cancer Card.

{I don't like being judged my my husband and told I am lying about the ongoing impact of my treatment. I really am close to breaking point. I am trying to make him understand but he sticks to his view. It seems that he doesn't see me or understand me at all. And what he does see is a somewhat despicable, manipulative person. Which feels like he is adding insult to injury.}

I would have the cowards attend a cancer meeting with group support people who
are all going through the same same SO THEY CAN LEARN FROM OTHERS WHAT IT IS
LIKE. If they dare to go.
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Old 08-04-2015, 03:41 PM   #9
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: Fatigue, and the Cancer Card.

What wonderful, kind, helpful replies from you amazing people. You have no idea how much it is helping! I feel understood and supported, but also humbled when I look at your individual journeys which have been pretty arduous and horrible yet you make time to help people like me get through a bad patch
Thank you
__________________
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.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 08-07-2015, 08:09 AM   #10
TKasander
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Join Date: Apr 2015
Posts: 6
Re: Fatigue, and the Cancer Card.

Jessica,
I'm with Bonnie 100%. Not only is going through treatment and being your own advocate exhausting, it takes over your life. Any little bit that eases the burden - go for it. Money problems on top of all of the other stress sure makes things difficult, but at some point what you can do is all that you can do. Encourage your husband to talk with someone other than you about his method of dealing with your illness. It took a lot of coaxing for me to finally do it, but it made a huge difference in our relationship. Sometimes being the care-giver is exhausting too, but we feel guilty that we can't fix the problem and we inappropriately lash out from time to time. For me, it was about the frustration of not being able to do more and sometimes Denise felt like she was being blamed when I didn't mean that at all. Hope this helps.

Ted
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Old 08-07-2015, 12:29 PM   #11
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: Fatigue, and the Cancer Card.

I have learnt quite a lot through this experience. One thing is that I have nursed a secret tendency to despise the feral, needy, demanding, incompetent, lazy cancer/chemo-victim I have glimpsed in myself since surgery, through all the ongoing fear-ridden and fatigue-ridden months. I have been afraid I am being a fat, demanding slug. Which is why his judgement of me hurt: it mirrored my own judgement of me.

Another thing is that to live with the fatigue and continue towards recovery, I MUST keep going with the things that feed my spirit: my lovely local pottery class, my meditation group, and daily morning walk to a local cafe to sketch my coffee cup on the table with the cafe behind, my daily evening walk with my daughter. When there is little that feeds me and many things that drain me, life feels pretty crappy.

And a third is to recognise that Ian and I both crave for the cancer, and the fatigue to be gone for good, and we have both rushed towards a pretense of "normality" and into a denial of the ongoing fatigue and fears.

So it has been important for me to become staunch enough to defend myself against his harsh judgement, for us both to own the truth and to live it and our relationship more consciously, honestly, acceptingly and lovingly.
__________________
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.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 09-02-2015, 12:27 AM   #12
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,606
Re: Fatigue, and the Cancer Card.

July 2015 Worktrial - perhaps you "trialed" and it isn't working for you right now. Is not working yet an option? Fatigue (chronic fatigue) is a real thing. Yes, nurture and feed your soul, EXERCISE even at gunpoint (it is the only proven method for fighting fatigue, 20 minute walk 1 of 2 times a day is part of the healing regime). Glad you've realized some insights, overall it does take awhile to get back to your "old" new self.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-02-2015, 03:03 PM   #13
jacqueline1102
Senior Member
 
Join Date: Apr 2012
Posts: 177
Re: Fatigue, and the Cancer Card.

Greetings Jessica,

I echo what everyone else has said here. I will add that you ask your health care providers to check your iron levels. My ferritin came back this week at 6.1. This is extremely low. So, you can do all the good stuff that everyone has mentioned and still feel fatigued. The issue may be your iron. Docs don't tend to check iron too often; not seen as a necessary test. And with chemotherapy treatment, the results even if after a few years has shown that iron levels, b12, D3, can take a big hit.

Good luck,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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Old 09-02-2015, 04:31 PM   #14
Donna H
Senior Member
 
Join Date: May 2014
Posts: 277
Re: Fatigue, and the Cancer Card.

I liked the "old" new self line.....after all that we have been through and continue to deal with, we can kiss our old self (selves??) good bye. I think realizing that life will not be the same as it was before all this helped me to cope with everything. I had to stop focusing on pre-cancer life and move on. Tomorrow is a new day. Why not make it a good one??
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