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Old 03-27-2007, 08:43 AM   #1
RobinP
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I hate all the negative stuff lately from the media about cancer too; it really doesn't help those with the big C. I learning not to listen to the news lately and it helps. I do feel for Sherry, especially with her brother having C. also and her being young with kids. Sherry, keep up the fight and vent as often as you need here--I'm praying for You.


Jean, amen, well said:

"I believe that all the ladies of all stages feel the same bond, we hate the
disease!"

PS Yes, I am a "believer" on many levels, and I do believe a cure for cancer is in the horizon via nanotechnology. There are clincial trials right now going on where this technology will help diagnose and irradicate cancer!
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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 03-27-2007, 11:21 PM   #2
StephN
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Wink To BUY or not to BUY ...

I did NOT buy in to the negatives when I was first diagnosed with Her2+++/hormone neg cancer.

I had three opinions and did get some numbers from those with different treatment options. The one I chose was the man who was less intent on those numbers and said that with the newer drugs and pacing of doses that there were better chances for most of us. I liked this approach and have not looked back since - just take a look at my "signature" and that should speak for itself.

I think a few of us should go on The View or one of the other shows to tell it like it REALLY is. There are many prospects and many ways to deal with ourselves once this disease is found out.

Seems many of us are dealing with family illness or our own relapses. Don't forget what Scarlet said, "tomorrow IS another day!"
__________________
"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 03-27-2007, 11:46 PM   #3
hutchibk
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I vote for going on Oprah instead of The View... At least she might give it a little more serious attention than the seemingly schizophrenic group on The View...
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-28-2007, 04:58 AM   #4
Roz
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Sherri, I agree with you. sometimes I get down and wonder "what's the use". I think it's natural to feel like that from time to time. It can be exhausting being upbeat all the time. We need to feel the reality of our situation occasionally, as well as the joy of living. That doesn't mean that we don't all hope for as much life as we can have, but it's also not being Pollyanna.
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Old 03-28-2007, 10:56 AM   #5
StephN
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Oprah, better audience

Don't get me wrong. Continually fighting my way through over SIX years of cancer treatments from head to toe has not been easy, but getting through it meant keeping a forward-looking perspective while enduring those clinic visits.
Looking forward does not mean we have to be upbeat all the time, just keep in mind that there IS more to life than our cancer, even though we now have some limitations that were not there before.

The beauty of our bodies is that we are able to "forget" severe pain and traumas to our body as time goes by. Otherwise, what woman would want to have more than one child, if the pain was the main issue? What happens after the birth wipes that out for most of us.

The ability to heal is a wonderful thing, and "the negative crap" is a hindrance in my opinion.
__________________
"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 03-28-2007, 12:20 PM   #6
hutchibk
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You are a true inspiration, too Steph! Your words really resonate with me and I needed to read them today. Thanks for posting.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 03-28-2007, 12:40 PM   #7
Vanessa
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I really needed to hear those words, also. Thanks Steph.
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Old 03-28-2007, 09:01 PM   #8
Annemarie
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I would too would say that cancer has been a hardship for not just me but my entire family. I was 32 at diagnosis. I have one child and would have loved to have more. A lot of dreams are crushed or cut short due to cancer. There are a few blessings along the way like most things in life.

My take on The View are a bit different than those who posted. I am not familar with bc and bone mets. I saw the episode and I believe Rosie said what the stats are for survival with that diagnosis. From reading the posts I see that that was inferred as a loss of hope. I think the stats are what they are and each case is a bit different. That being said anecdotal stats are not real numbers they can't be reproduced stastically. So knowing someone who beat the odds does not make Rosies information wrong.

I have had brain mets three times in six years. My neurosurgeon told me that my prognosis was not very good. He did tell me that when CA pts. get only brain mets they seem to do well. Knowing the stats was very sobering. I actually think that by knowing my stats has given me the opportunity to live my life differently. Like many who have posted I see my time very valueable now. I no longer take good health for granted and I think I am less concerned about things that don't really matter. My oncologist once said to me,"If I think you are going to die I owe it to you to tell you. Would you really want to go to work if you only had two more weeks to live?" We both chuckled but there was a lot of truth to that. So for me the truth helped me in the fight.
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Old 04-04-2007, 06:24 PM   #9
fauxgypsy
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Thumbs up life is terminal

Sherry,
I was recently diagnosed stage IV and it is frightening. I can't imagine going through this with young children. My girls are grown and I recently married the love of my life after many years in a bad marraige. Two years ago my baby brother went to sleep on his couch and didn't wake up. He was only 35. When he was a baby they told us he probably would not live much past his teens. He had two young children. Last year my stepfather passed away after fighting lung cancer for a year. He had lost two sons within six months the year before. And recently ( right after my diagnosis) my husband's stepson from his previous marraige was hit head on and killed by a driver that had a massive heart attack. Jason was 30 and the other driver was 40.
I guess where I am going with this is that we are going to die of something someday. When I start feeling sorry for myself and I do, I try to remember that I am not promised tomorrow. I have time to come to terms with this and to help my family prepare. With any luck and lots of prayer I hope to have many more years. I know that I have a lot yet to learn about and from this illness and I have had more "@#$% opportunities for growth" than I have ever wanted in my life. But I have found that I am paying a little more attention to the important things in my life and a little less to ambition. I am still very angry about it and when I am very tired I just want to cry.
My heart goes out to you and your family. I know that it is hard.

Leslie
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Old 04-06-2007, 10:47 AM   #10
Malena
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The most important thing is not to give up.
When I discovered cancer I took a moment for me in my room: OK, I said, I will have to fight but I'm not afraid and I don't want the cancer to destroy my life.Every person has a different path on this earth and the path could be long or short: I'm like because, in any case, I know I can not lose my time.

Sandy: I definitely want to see your green shoes!
__________________
September 2005: Diagnosed of breast cancer at age of 35
October 2006: port a cath
4 chemos (epirubicin + taxotere) before surgery
February 2006: mastectomy + 10 nodes

4 cm tumor
, 1 node micromets , ER-PR-, Her2 3+
June 2006: started Herceptin
July 2006: stopped Herceptin for high heart toxicity
January 2007: reconstruction


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Old 04-06-2007, 03:29 PM   #11
Diane H
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Chrisy I like what you wrote....

We are at one time another up or down, negative or positive and there really is no one right way to feel. I see my diagnosis as two sided, one of the worst things that ever happened to me, and yes, sometimes I feel it has given me opportunity for personal growth. I still would have wished not to go through it. Sherry my prayers go out to you and your family, I understand your sadness.
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Old 04-11-2007, 09:11 PM   #12
Patricia
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Taking advantage of every day

Cancer has caused such a complex change in me personally and I do believe that it is very important to be as relaxed and positive as possible. In the time since my dx (july 05) there have been so many others in my life that have also been dx; ex-husband, sister in law, brother in law, best friend, best friend's husband, 2nd husband's ex-wife. I feel surrounded by it and forever changed. I dont think blessed is quite the way I think about it, reborn almost. I take everything (non cancer related) easier, I am more mellow and I am more careful about all of my choices (what to eat, how to spend my time, who to spend it with, how i save/spend my money, how i do my job, etc) I am fundamentally a different person. I also live with a level of fear that I often find difficult and have to focus on managing so that the dark clouds dont take over on those days that I know we all have.

Sherry, my thoughts and prayers are with you. My ex-husband also has melanoma (stage 3c).

Hugs,
Patricia
__________________
age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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