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Old 07-03-2013, 01:01 PM   #1
KirisMum
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How can they know this?

Kiri had her first scans after her Stage IV diagnosis last April and met with her oncologist yesterday. She had mets to her bones, liver, lungs and lymph and was on Taxol, Herceptin and Perjeta (taxol weekly, H and P every three weeks) for 12 weeks. Her oncologist told her she had a "Phenomenal" response to the chemo, all cancer gone from lungs, bones and lymph and new growth in bones, but liver lesions, while shrunk, still there, and no new liver lesions. So they are keeping her on a reduced dose of taxol, 2 weeks on, l week off, for 3 more months and then will switch her to P&H until progression, which they estimate in 9-12 months.

Her oncologist also told her that given the meds available, and the type of aggressive cancer she has (triple positive), she could expect to live another 5 years. (Originally, I think she had told K she had similar patients who had lived 10 or more years).

This is Dana Farber, a top institute, and K (and I) have full faith in her team. But how can they say 5 years, with all the recent research and new meds? Or am I being pollyannaish in hoping for more? Is this in fact a reasonable estimate?

Right now aside from the se's from taxol, she is perfectly healthy. She's strong and active, horseback riding, rock climbing, living a normal life aside from the 2-3 days that the tx throws her back. Her liver function is normal. She had multiple lesions in her liver; I don't know how many have shrunk, or by how much.

Please honestly tell me what you make of this.
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Old 07-03-2013, 01:39 PM   #2
conomyself
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Re: How can they know this?

I don't know why they say things like that. I've told every onc I've seen to please not predict my future, because I know they can't. They don't know what is going to happen to any individual.

I have a degree in statistics, and they teach you in the basic course that no matter how good the statistics you cannot predict the future for an individual.

If you look at signatures of many of the stage 4 gals on this site they have gone much longer than 5 years, and are still going strong!

Love,

Rachael
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7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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Old 07-03-2013, 02:30 PM   #3
Lauriesh
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Re: How can they know this?

I agree with Rachel. The drs just don't know how long we have. I told my onc when I was first diagnosed that I didn't want to hear anything about my prognosis . That being said, the average life expectancy of stage 4 seems to be 3-5 years. Yes, there are some that live 10 years or more ( and those that don't even make it 2 years), but after being on this site and 2 others, it is rare to see someone make it to 10 years, and 3 - 5 seems to be average.

The hope is new drugs will be approved, hopefully soon enough to help those of us who are stage 4.

Laurie
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4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
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Ned - 4 years
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Old 07-03-2013, 02:32 PM   #4
'lizbeth
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Re: How can they know this?

I'm with Rachael, it really is not predictable currently. Your daughter is doing great.

My husband was given 6 months to live in 1998, its 2013 and he is still putting up with me!

Strong & active, living a normal life . . . sounds like an indicator to me she will beat whatever odds are thrown out there.

Imagine how science will change in 5 to 10 years. I don't remember hearing so much talk about Perjeta or TDM1 years five years ago. Now it is part of standard of care.

Take deep long breaths in, hold for count of 4, slowly let breath out. Repeat 7 times.

Envision a future with your daughter happy, healthy and cancer free.
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Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
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Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

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Old 07-03-2013, 02:36 PM   #5
BonnieR
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Re: How can they know this?

Hello again. Your message contained a lot of good news about her response to treatment and her continuing recovery
. I never know what to make of these sorts of predictions of life span. Especially in a situation like hers where she seems to have exceeded expectations already. I suppose doctors feel the need to give patients some kind of perspective. But it's so arbitrary when medicine is evolving so quickly and advances being made every day. It seems so wrong to put a number on it because, of course, no one can possible know that. And your girl is just the sort to defy statistics anyhow! But of course you are scared and sad. And we are here to listen and support you always. Keep the faith. That's important!
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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 07-03-2013, 03:07 PM   #6
Rolepaul
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Re: How can they know this?

Nina was told 90 days in January 2012. She is going strong and we are headed down to MD Anderson on July 13 for eval mtg on July 15. So far she is rock solid no signs of disease. Doctors talk in percentages. 10 yrs and 5 yrs are the same to them. As long as people keep trying, the disease keeps having longer times before it is a problem. You have a great team, do not switch at this point.
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Old 07-04-2013, 10:07 AM   #7
NEDenise
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Re: How can they know this?

KirisMum,
Unless that doctor is also a psychic... I don't think I'd give much credence to what he/she said. In fact, I'm surprised they even quoted a number at all!
Treatment is not 'one size fits all' because we're all different. I think the fact that Kiri is feeling so well is a good indicator that her body is healing.

I'm stage 4... and I could get hit by a bus tomorrow... or I could still be kicking when my grandchildren are born. I don't know which will happen, and neither does some doctor.

Like Bonnie, wise woman that she is, pointed out... medicine changes every single day. Ten years ago there was no Herceptin. Six months ago, we didn't have TDM-1.

Take a deep breath.
Enjoy all the good news on Kiri's scan.
And, trust that whatever happens, you'll make the right decisions, and handle it.

Sending prayers for peace and good outcomes
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 07-04-2013, 12:18 PM   #8
KirisMum
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Re: How can they know this?

Thanks so much, all. This is incredible support, and means a great deal to me. I am no ostrich with my head in the sand, but with everything changing so quickly and dramatically in breast cancer treatment and research, this latest prognosis just didn't ring true.

Another thing that didn't add up: when we met with K's oncologist right after she was diagnosed Stage IV in April, based on the scans done then, and the liver biopsy, her oncologist said she could live 10 years. Now that sounded like a lot to me, but I was happy to take it. Now, three months of taxol, herceptin and perjeta later, her tumor markers are down to normal, the cancer in her lungs, lymph and bones has disappeared, there is new bone growth (probably due to her strenuous physical workouts), her liver mets have shrunken, there are no new lesions, and she has has, in short, a "phenomenal" response to chemotherapy. So HOW, on the basis of this, is her prognosis suddenly cut in half??

I know I'm quibbling, and there is really no answer to this, and more than that, I was not privy to this latest conversation, so don't really know all the parameters -- because her cancer is particularly "aggressive," she says, and liver mets are the most dangerous, because there was more bone involvement than they thought---but they knew about the extent and profile of her liver tumors from the beginning, and the bone cancer is resolved....?

It's enough to drive anyone crazy.

I thank you all for your most welcome and informed responses. Hope everyone is having a wonderful Fourth!!
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Old 07-04-2013, 12:23 PM   #9
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Re: How can they know this?

Kris mum,

Having been at SABCS the past few years has shown me just how much research is being done on the HER+ cancers, and how quickly new targeted therapies are being developed. I dare say no one can come close to predicting survival rates because of the continued discovery of new avenues of treatment.

Being triple positive puts us in the position of most likely having the most treatment options of any other type of breast cancer.

"Do not let tomorrow's worry rob you of todays's joy."

Be vigilant, but enjoy life now.

My best to you,
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
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Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
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Old 07-04-2013, 05:48 PM   #10
tricia keegan
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Re: How can they know this?

A response like that is wonderful and even if the Onc is correct (which is doubtful) bu five years there will be many more drugs available so I think you both can breathe and enjoy life
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-05-2013, 05:42 AM   #11
Lien
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Re: How can they know this?

I have travelled through cancerland for over 9 years now, and on this journey I've learned that no doctor can predict how any individual will fare. A phenomenal response to initial therapy is a very good, hopeful sign. She will live as long as she will live, regardless of what anyone says.

With all the new developments, if I were her, I'd aim for 30 years survival. And I know of patients whose cancer was completely eradicated. Why shouldn't she be one of them? We just don't know.

And besides: none of us knows how and when we will die, or from what cause. We only know that we will die one day. I try to make the most out of every day, just in case...

Love

Jacqueline
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Old 07-05-2013, 07:03 AM   #12
NEDenise
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Re: How can they know this?

Well said, Jacqueline!
That's the kind of thinking we all need to latch onto!

Thanks for being a bright spot in my morning!
Denise
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Old 07-05-2013, 07:52 AM   #13
sarah
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Re: How can they know this?

will they put her on TDM1? sounds like she reacts well to chemo and as others have said, so many new things are coming out, cancer may change completely. Enjoy life is the most important thing. Prove the onc wrong.
hugs and love
sarah
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Old 07-05-2013, 08:02 AM   #14
KirisMum
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Re: How can they know this?

I am so heartened and encouraged to read these responses. Jacqueline, that is a beautiful outlook. Thank you so much. Thank you all. I'm humbled and grateful that in the midst of all your own trials you ladies are so generous in reaching out to talk me off the ledge. XOXO
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Old 07-05-2013, 11:17 AM   #15
Jackie07
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Re: How can they know this?

When it comes to statistics/prognosis, everyone needs to read Steven Jay Gould who had survived 20 years more than the predicted average/median years given by his doctor. http://people.umass.edu/biep540w/pdf...ay%20Gould.pdf
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Old 07-05-2013, 12:48 PM   #16
jellybean
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Re: How can they know this?

I am glad your daughter had such a great response to treatment. Of course, her oncologist can't know how long she will live. All the doctor can do is give his best estimate, based on the median of how patients like your daughter have done in the past (without the new medications that are coming along). My oncologist was very reluctant to give me any estimate, when I was diagnosed with widespread metastatic disease (lots of bones, liver, and lymph nodes). I pressed and pressed, wanting to be able to plan my approach to work, finally sending her an email with multiple choice questions. At the time, she said 5 years, outside chance 5 to ten. Well, next month will be 5 years since I received her email, and I am still (knock wood!!) doing great. Yesterday, for example, I rode my bike 40 hilly miles and then swam a few laps. It has been almost 6.5 years since my original diagnosis (with was stage 4 from the beginning). In November, I will hike to the bottom of the Grand Canyon. So, don't lose hope! Her doctor probably wanted your daughter to have a sense of the possible time frame, so she can seize the time available to do what she has always wanted to do.

JB
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Old 07-05-2013, 01:57 PM   #17
ElaineM
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Wink Re: How can they know this?

Doctors can't know how long a person will live.
They have data from clinical trial results and other things that are purely related to science. They do not take human potential, a patient's attitude and what the patient is doing to help himself or her self into consideration.
For example if a person has is aggressive, has a positive attitude, eats healthy and exercises that will help a person live longer.
Doctors do not think about those things when making predictions.
A doctor gave me 6 months to live in January 2000, but I decided that was not going to happen.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
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Old 07-05-2013, 02:12 PM   #18
StephN
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Re: How can they know this?

I wonder if they can knock down some of the bone mets by radiation. She still has the spots in liver to measure for purposes of tracking whether treatment is working or may need changing.

Local treatments are often part of an extended life with cancer. You are a caring, loving mum, and trying to maintain a balance in the face of something like a stage IV cancer diagnosis is asking so much of families.

"Never give up."
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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 07-05-2013, 03:00 PM   #19
CoolBreeze
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Re: How can they know this?

I have a very good cancer friend, one where we share all those cancer secrets, you know - the only one who gets it? She is on her 9th year with HER2+ cancer with spread to lung and liver. About six months ago, she had ascites and it wasn't looking good, and now she is vacationing out of the country and visiting people from everywhere.

Nobody can KNOW anything about your daughter. All they can tell you is averages, estimates, mediums and means. She may fit in with them and she may not and there is simply no way to find out.

Living with uncertainty is what living with cancer means.

If you haven't read this before, I recommend you do:

http://obront.wordpress.com/2010/12/...hen-jay-gould/
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 07-05-2013, 04:24 PM   #20
KirisMum
Senior Member
 
Join Date: Nov 2010
Posts: 186
Re: How can they know this?

LOVE the Jay Gould article! Such a great man - one of my personal heroes. Thanks for the link. I'd misplaced it. :-))

Cool Breeze, how are you doing? Waiting for an update. <3

Steph, you are my hope and my lodestone; you can't know how many times I turn to your profile for reassurance in my darker days. I probably wasn't clear in my post - the mets in Kiri's bones are GONE. When I referred to new growth, I meant bone growth where the cancer used to be, not cancer growth. At least that's what K told me. She's a scholar not an oncologist, but I think she got that one right. ;-)

I just put my other child, K's younger brother on a flight to Europe for a month. He's never been abroad and will be part of a group at some point, but on his own a lot too. The Almighty is having a field day with me. :-/
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