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Old 01-07-2011, 05:14 AM   #1
Pam P
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update on my progress

Big doctor day yesterday. First my oncologist, then my ortho surgeon.

Onc. had my pet/ct scan report. Stable for the most part; bone mets same or slightly improved from Sept. scan. New on pet/ct (but also appeared on Sept. CT scan} small nodules in left lung low metabolic suv and non- specific. Onc. says not identified as cancer, but this is new and has me worried. My hemoglobin is holding at 9.9 since the transfusion which is good for me. My ca2729 has shot up another 1000 pts and is now 3900!!!!! That has my onc. nervous even though the scan report was pretty good. He wants to switch me to something stronger that tykerb with the herceptin. He mentioned abraxane or halaven. Reading Sheila's good results with halaven, I' like to try that. I won't start a new chemo though for another month or so to let me heal more from the surgery and get started or maybe even finished with radiation, I do have to have radiation on my femur and have a consult with that onc, next Wed.
I told the onc. about the blood in the stool tests being positive at rehab. He wants me just to repeat them now to see if it has cleared up. So I have my little collection supplies. Yuck.


My ortho surgeon had xrays taken and said the hardware in my leg looks good. He took out my staples and said things look to be healing well. No restrictions - do things as I feel comfortable. I have a huge hematoma the size of a softball sticking out on my hip. he said not to worry about it, it will dissolve gradually; should look much better in a week. Said to not start getting radiation treatments for 2 more weeks.

So overall good news I guess. I'm feeling in kind of a funk though- tired, blah,. Onc. said it's probably still from the surgery. Ortho didn't agree; said my energy should be back to normal now from surgery and tired feeling could be something else. I don't know if i'm a little depressed from being so homebound for these last 3 weeks. Maybe if I can get out of the house a little and back to 'normal' routine I'll feel better. That's what I'm going to try even though I don't feel like doing anything. Wah, wah, wah,

Thanks for listening and for all of your support and good wishes during my surgery and healing. Love you all. Pam
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 01-07-2011, 07:04 AM   #2
whatz
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Re: update on my progress

Pam,
Glad to hear this somewhat good news :-). I'm not a bit surprised you are tired. You've been through the ringer these last few weeks. Added to that the holiday season and dreary weather...yep, good recipe for the blah's. Wishing you a good dose of "yehaw's" and keep on healing well.
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
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Old 01-07-2011, 07:23 AM   #3
Ellie F
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Re: update on my progress

Hi Pam
I am also not a bit surprised you're tired! You have been through so much for so long, why do we assume that our body will just bounce back quickly. Take your time, go at your own pace. No doctor or anyone else can say how long your particular healing wil take!

Good luck with the new treatment.

Ellie
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Old 01-07-2011, 08:01 AM   #4
ammebarb
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Re: update on my progress

Good morning, Pam. You did have a big doctor day, didn't you? Here's hoping that the choice of the next treatment is the perfect choice and that you'll see that CA2729 coming down...in the next month, as you continue to heal, try not to expect great energy or disposition. You really have been through a lot recently and we so often expect "rebound" of ourselves and are disappointed when it can take longer than we expect. Sounds like you have a plan to help yourself about the "blahs" and getting out a bit, and establishing a more "normal" routine is a good and reasonable plan. Saying a prayer for you as you continue to heal. Gentle hugs.

Barb A.
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Old 01-07-2011, 08:59 AM   #5
Mary L
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Red face Re: update on my progress

Hi Pam, so glad to see your message. You really have been through alot and I think you are doing well considering all that has happened. I think getting out does make you feel better, just don't over do it. Best wishes!!! Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 01-07-2011, 10:27 AM   #6
Ceesun
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Re: update on my progress

Pam, I concur with the others that you have been through a great deal. Give yourself time to rest and heal...I do understand your need to get out and about, too. I am pulling for ya! Ceesun
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Old 01-07-2011, 10:31 AM   #7
BonnieR
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Re: update on my progress

You are so entitled to say "wah, wah, wah"! Dont apologize. At the same time "when you are in a rut you should not furnish it"! So feel bad but do some little thing that might make you feel better. What would that be? Reading a book, going to a movie, out to lunch?
And I am so tired of surgeons telling us how recovered from surgery we should be feeling! That is their mantra. It takes alot longer to bounce back, esp when you have other things going on. So just cut yourself some slack. And keep the faith
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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 01-07-2011, 11:19 AM   #8
ElaineM
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Wink Re: update on my progress

Happy New Year Pam. Thanks for checking in with an update.
First of all you are entitled to feel tired. You have been through alot and you have expected alot from your body recently. I would suggest you increase your activity level little by little. Please don't try to do it all at once. Your body will let you know what it is willing to do.
I had a hip replacement after an accident in 2005, so I know orthopedic stuff takes awhile to heal. If the hematoma doesn't resolve by itself the docs might be able to drain it later if it bothers you.
I am glad your scans are sort of stable. The increase in the tumor markers might mean things can get worse in the future, so I am glad your oncologist is suggesting adding something a little stronger. You might want to ask Sheila more about her Halavan experience, but she seems very happy with her progress so far.
Take good care of yourself. I wish you peace, better health and happiness in 2011 and beyond.
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Old 01-07-2011, 12:08 PM   #9
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Re: update on my progress

Pam I am also chiming in that of course you are tired - who wouldn't be with everything that you have been through? Only other thing I can mention here is that 7 years ago, pre BC, I had a hysterectomy and just could not get my energy back. Had some blood work done 3 weeks later and it seems that the hospital had sent me home from the surgery anemic... my big surgeon had trusted one of her underling residents to check everything out when I was released 5 days after the surgery... seems she signed off on my blood work without noticing my extremely low counts...

Of course taking iron supplements corrected this - just a thought.

and of course eating some chocolate couldn't hurt

all the best
caya
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1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
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Old 01-07-2011, 12:25 PM   #10
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Re: update on my progress

Dear Pam -

You have come over a large "hump" lately. You can't see very far down the horizon and that is always a hard feeling for me to cope with. You know you have a few more choice points ahead and it takes energy to think about that now.

Yours was not an ordinary ortho procedure and you had months of another disease process dragging you down.

All this in the midst of a hard winter and blammo - a funk. Knowing what that is about is the first step, then working within your limits to expand the "four walls" will help.

Is the hematoma from the surgery? I have found that using ARNICA (a homeopathic) both internally and externally helps bruising resolve a lot faster. There are tubes of gel and cream form, which are not expensive.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-07-2011, 12:48 PM   #11
PinkGirl
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Thumbs up Re: update on my progress

I see I'm not the only one a bit ticked by the ortho's comment ... geez ... gimme a break ... give you a break ... maybe we could all get together and make a list for this doc ... the reasons why you might still be tired ... geesh...

Bonnie gave you great advice ... keep moving forward ... get some things going on to look forward to .... We're all here pulling for you PamGirl even if you're still tired
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 01-07-2011, 01:58 PM   #12
ElaineM
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Just a thought Pam. Steph mentioned iron supplements. Great idea.
Some folks get constipated from iron supplements in pill form. I took liquid iron which did not cause constipation. It may be available at your local pharmacy if you want to try it. Sometimes we have to ask a pharmacy clerk if it is not on the shelf even though it ususlly does not require a prescription. They had it behind the counter in my local pharmacy.
I never had shots for low hemaglobin or low white blood counts. I never had a blood transfusion for low hemaglobin, because I used liquid iron and ate foods with iron and vitamin C.
Also either taking iron supplements or eating foods with iron works better when the person takes vitamin C supplements or eats foods with vitamin C around the same time as the iron.
Take care.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 01-07-2011, 10:33 PM   #13
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Re: update on my progress

Pam,
I get so fed up with doctors, surgeons and other medical ppl telling me how I should feel after a surgery, or procedure that they have never had done on themselves. Having your femur repaired is not a minor surgery. I know I certainly didn't bounce back as fast as my ortho onc told me I would. Far from it!

It's no wonder you would be feeling tired after all you have been through. Then there's always the endless doctors appts and decisions to make...it's very draining so go easy on yourself. The way your feeling sounds very normal to me after all you have been through. Hopefully that hematoma will resolve quickly so you can get the rads behind you and get started on the halaven to knock those tumor markers down. If your still using your walker...that alone is enough to make you tired. lol I wanted to throw mine across the room all the time...it's so restricting. Hang in there Pam...I know it's far from easy. Continued prayers for you.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 01-08-2011, 12:19 AM   #14
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Re: update on my progress

Chelee just reminded me of another gripe I have with my latest surgeon. I had been misdiagnosed with lung cancer and had a lobe of my lung removed. He was "suprised" I was "not happier" when he told me a few days later that it had all been a mistake. As I lay in the hospital hooked up to chest tubes....
They have no sensitivity.
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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 01-08-2011, 12:40 AM   #15
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Re: update on my progress

Pam, I am thinking of you so you can feel stronger and recover faster. You went through a lot and for anybody it takes some time to recover from hip surgery. I can understand you want that episode to be behind you and concentrate on your next move to get those markers down. Continue giving us news. Hugs. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 01-08-2011, 12:35 PM   #16
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Re: update on my progress

Thinking of you - hoping you are feeling stronger here anyday ... keep the faith we all have bad days! And hey - if your doctor wants to try taking your list of meds then maybe they would know why you are feeling a bit down! I always liked my doctors when they said how are you when you are chemo or Herceptin .... ugh! Yah, yah - but they are drugs and they can wipe us out! So ... hang in there and we are all pulling for you!
Karen
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Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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Old 01-08-2011, 01:16 PM   #17
Jackie07
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Re: update on my progress

Pam,

Thanks for the update.

Watch some good comedy movies that will bring laughter - it increases the release of endorphin and will get rid of the 'depressed feeling'.

There are probably some 'safe' exercises you can do which may improve your mood and speed up recovery. I've watched before on PBS of a lady teaching exercising while sitting in a chair. Perhaps you can try that.

Sending you good vibes.
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
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Old 01-08-2011, 06:19 PM   #18
Joan M
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Re: update on my progress

Pam,

I'm glad your on the mend and you'll be getting your energy back soon. You've had major surgery, which is not easy. Keep the good reports coming.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 01-08-2011, 06:29 PM   #19
Mary Jo
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Re: update on my progress

Hi Pam,

Just a gentle cyber hug I wanted to offer you!

Sent........you got it???

Love.....Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 01-08-2011, 08:00 PM   #20
TriciaK
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Join Date: Sep 2005
Location: St. George, UT
Posts: 582
Re: update on my progress

I just want to add my thoughts and hugs to all the rest. You are always so quick to cheer others up (and on). I have appreciated so much your concern for me and want you to know how much you are loved and appreciated. You've gotten so much good advice here, and I don't have much to add about all the physical things you are going through, except to agree that you have a right to take it slow. I remember when I was fighting my first breast cancer (almost 26 years ago!) I had been very active with a large family and sharing a full-size psychology practice with my husband. Suddenly I was home, "doing nothing", feeling worthless and depressed about "not accomplishing anything." I told a doctor friend what I was feeling. I have reminded myself many times since of his comment and I think it is most appropriate for you now.He said: "You have to realize that you are working harder right now than you ever have in your life. Healing is hard work. Give your body all the help you can:rest, good food, positive thoughts, even pampering. And don't feel guilty about it!!" It is very good advice for you right now, along with all the rest you have received. I always remind myself that the scriptures say "And it came to pass", not "it came to stay". This too will pass and you will get stronger! Remember we are all thinking and praying for you. Hugs, TriciaK
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