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Old 02-02-2014, 04:42 PM   #1
Cat
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Posts: 184
Feeling good (most of the time)

I was in my oncologists office the other day and started talking to a woman that sounded like she had very early breast cancer and a lumpectomy with no need for chemo or radiation. I was happy for her but also jealous. Then I started thinking about it and realized even with stage IV and multiple treatments over the past almost 8 years, I actually looked and probably felt healthier than she did. I began to sit taller and carry myself stronger because most of the time that is how I feel. Sure I have my side effects that bug me but at this point I know how to handle most of them. I wouldn't argue if God wanted to remove this disease from me but since it's here I haven't stopped living. There are times when I can't exercise because of it (and also times I choose not to... oops). I eat with health in mind but am not fanatical and enjoy "junk" at times. I was thrilled when they came out with dark chocolate being healthy. It seems my oncologist sees me as doing and looking very well and comments on it regularily and I figure he would know. I have never asked about prognosis or time left etc. because I know they are meaningless except to the bean counters somewhere out there. I won't lie though I did check numbers in the beginning until I realized how fruitless it was. I have tried to keep my body healthy to tolerate all that I ask it to put up with and so far it works most of the time. The winter in the Chicago suburbs has been very long starting in early Dec. and it feels like it will go on and on, especially when Anchorage has been warmer than us and last year our first measurable snow was Jan. 25 and we have so far passed our yearly average. As much as I don't like it , I relish the fact that I can get out and snow blow the drive and or shovel. I haven't gotten to ski this year but weather permitting I will try. I miss my dog and walking him but I am grateful not to have to shovel the backyard for him to go in. He was a good size (55#) but we've had a lot of snow pile up and I wouldn't want to stick my butt in it to poop so I don't think he would have either. But I regress and got hooked on the weather here which unfortunately is a big conversation piece around here since no one wants to go do anything else. I know it has nothing to do with cancer but maybe thats my point. We have no control over cancer, weather, the people in line ahead of us in the store, all random things that get in our way but are only as devastating as we let them be.
Thanks for letting me ramble and hopefully you all have or get some peace with this stupid disease and see the light at the end of the tunnel.
Now I think I'll go make some chili, and get ready to curl up in the family room and watch the superbowl and watch the weather out the window...
Hugs to all, Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 02-02-2014, 04:53 PM   #2
BonnieR
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Posts: 2,210
Re: Feeling good (most of the time)

What a wonderful and uplifting message! Thanks for sharing it. Enjoy every minute of precious life, even in the snow!
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 02-02-2014, 09:05 PM   #3
Cat
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Posts: 184
Re: Feeling good (most of the time)

Tho I do regress in age at times. I meant to write "I digress" in my rambling above. I guess that's why I've never tried to write a book. The editors would go nuts!
Cathy
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 02-03-2014, 12:07 AM   #4
Pamelamary
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Location: Melbourne, Australia
Posts: 494
Re: Feeling good (most of the time)

Dear Cathy,
That just about sums it up - feeling good, most of the time! I think most of us feel pretty grateful if that is the case. So continue to sit tall and carry yourself strong - and hope you enjoyed your chill! By the way, down here in southern Australia, we are panting through days on end of 40 degrees! (that's Celsius).
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-03-2014, 03:59 PM   #5
JillaryJill
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Posts: 271
Re: Feeling good (most of the time)

Cathy,
I am a polar vortex (and breast cancer) survivor also. You can ramble all you want about this Chicago winter!!! It has been a doozy. Your post is uplifting...you have been through so much...yet your light shines through in your writing. Good luck to you!
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 02-03-2014, 07:38 PM   #6
suzan w
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Location: Naples FL
Posts: 1,744
Re: Feeling good (most of the time)

Thanks for this post! I also feel good...most of the time! Feeling sorry for myself does happen, I seem to be able to kick my own butt however and get back on the positive side. Our "polar vortex" here in as Florida saw temps fall into the low 40's.....!!!!!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 02-04-2014, 05:58 PM   #7
KsGal
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Posts: 585
Re: Feeling good (most of the time)

Thank you for that post. I, too, feel fairly well most of the time. I have to take naps every six or so hours because I am just soooo tired, and I have to pop a pain pill when I first wake up most mornings, but I am still here. I can go shopping and drive my car and go out to eat with my kids. I still cook dinner for my family every night, and I am so very grateful that I am able to do all those things, praise God. I get scared and depressed sometimes, especially when I think about friends we have lost here like Denise and Jessica and Courtney who had the brain mets like me. I try to keep those thoughts out of my head, but it's just too hard sometimes. When I start thinking like that I get depressed and I cry, not just for myself but for all of us. I wish this had never happened to any of us. It only lasts a while, but nobody wants to visit that place for very long! I have a lot to be grateful for, and I will continue traveling down this road looking for the positives and being grateful for what I have.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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