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Old 03-25-2007, 05:42 PM   #1
Cathy1
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Don't buy into the negative crap!

If anyone starts in with the "Terminal" stuff, tune them right out!
There is no one on the face of the earth who is not terminal. Since being diagnosed in 1999, I have known people who died from diabetes, heart trouble, and accidents. I have lived more in the past eight years than in all the years since my birth. Until I was diagnosed in '99, I had never really lived- not like I do now, savoring every precious second and changing the things in my life that needed to be fixed; making peace with God and learning to be kind to all of His children. Cancer has ultimately been the blessing that has allowed me to pour out my true loving feelings for my family and friends, so they will never doubt how much they were loved.
I never noticed the miraculous wonders of creation until lately- the miracle of each human person, the gorgeous colors and types of flowers and trees. the sparkles in the snow, the magnificence of water (I'm so grateful to be able to take a bath every day)
Live every second of this special life you have been given and appreciate your life for the beautiful and spectacular gift bestowed upon you by your awsome and loving Heavenly Father. He alone is the author of all life and He alone knows how many seconds each person has left before He takes us out of here.
Focus on all things uplifting and positive, stay away from negative people, and replace every negative thought with a positive one.I beleive God is using each one of you for a special purpose and I beleive you are all Saints.
God Bless and Keep You All- Cathy
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Old 03-25-2007, 06:15 PM   #2
juanita
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Amen to what you said! My first onc was into the negative side of the numbers and not the positives. And when I quit him and that chemo he made feel like I was going to die because I was quitting. Here I am 2 1/2 years later still fighting and kicking!
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Old 03-25-2007, 06:30 PM   #3
Sandy H
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Cathy, I agree with everything you said. I fit into that whole new life. I have done things I never dreamed I would ever do. I even dressed different like the bright green lime shoes I purchased in Florida. Everyone is special to me each in a different way. Everything here on earth I see in a whole new light. I have become closer to God through this journey. I am more free to reach out to people therefore, have many more friends. I took up oil painting and really surprised myself at what I am painting for pictures. There are 3 bc people taking the class-all new at it and maybe more but haven't said they are bc. We are all beginners. I don't have any negative friends around me if I do I can change them real quick or stay away from them. Wishing you well, sounds like you are living life to the fullest and so am I. People don't bother me anymore if I want to do it I do it!! God Bless you Cathy, hugs Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 03-25-2007, 08:30 PM   #4
TriciaK
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Cathy, I couldn't agree more! I am convinced that staying positive is one of the main reasons I have made it through 21 years of fighting cancer, and especially since June 2004 when I was fighting a heart attack, BC mets to my lungs and phuemonia, then open heart surgery last May! I learned self hynosis and put it into daily practice. I never say "I have cancer" but "I am fighting cancer". When my oncologist told me I might have another year to live, I told him, "No, I have at least 5 years to live!" That was almost three years ago. I couldn't have done it without a wonderful supportive husband and a large loving family. I also give much credit to this wonderful website and all you Amazon warriors who keep fighting. You are absolutely right on, Cathy, and so are all the others who have and will agree with you about avoiding the negative. Only God knows when our time will be up, and I understand it may possibly be negotiated with Him, too! Keep on a'keepin' on! Thank you for your post. We need to be reminded to "accentuate the positive and eliminate the negative"! Hugs, Tricia
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Old 03-26-2007, 05:58 AM   #5
bobbiw
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It truly is a life altering diagnosis-at least for me. I am now more positive than I have ever been, about everything. More at peace, more laid back.

Thank you for your post.

Bobbi
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Diagnosed 10-18-05 found during annual mamogram
Left mastectomy 10-27-05.
Sentinal node biopsy-node negative
IDC Grade 3 of 3
Tumor 2 cm margins clear
HER-2/neu 3+++
Er Pr +
Began chemo/AC every 3 weeks 12-6-05 followed by Taxol and weekly Hercpetin (Herceptin through June 2007)
Right prophlyactic mastectomy June 2006 with expanders. Due to have exchange surgery sometime end of May 2007.
Exchange surgery completed June 2007 with saline implants and nipples. Darned left implant is lopsided to the left due to the wrongly formed pocket and my wrongly formed chest wall!
Switched from Tamoxifen to Armidex in May due to menopause.
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Old 03-26-2007, 06:11 AM   #6
MJo
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While I can't call cancer a blessing, I know that it has definitely changed me and I am not the person I was. I am better in many ways. And while taking life one day, one hour at a time is very difficult for me, I am surely savoring my life more than before.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 03-26-2007, 06:20 AM   #7
heblaj01
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Years ago I listened on TV to the interview of a well known French oncologist on a tour of lectures in North America. He said (& this was before many of the new treatments were discovered):I treat & save 30% of the "terminal" patients refered to me after they have been given up by their caregiver.

His motto was never to give up hope.
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Old 03-26-2007, 09:04 AM   #8
Gerri
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When I was diagnosed I decided that I would do everything I could to carry on as before - for myself and for my loved ones. I chose to continue working through treatment because it gave me something to do other than sitting at home feeling sorry for myself. It wasn't always easy but it was certainly doable. Whenever anyone remarks on my positive attitude I just remind them of one thing: You may not choose what life throws your way, but you can choose how to deal with it.

The power of positive thinking goes a long way!!
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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Old 03-26-2007, 09:21 AM   #9
Jean
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Thumbs down

Great Thread,

I was a little annoyed this morning when I caught the view channel 7
(I do love this show) they were speaking about Elizabeth Edwards.
It was mentioned how bone mets are terminal with a 5-10 yrs.
survival...I was so angry and annoyed with them. I know a gal who
is a 20 yr. bc surviver - Oh and by the way has bone mets! With
all the new breakout drugs etc. who knows what we may have at
our finger tips in two years - five years - etc.

Reminds me of my first onc. Dr. Gold (Gold she was not- more like nickel) when I asked her do you think in the next ten years
we will have a cure for this disease? She did not even look up
and continued to write..." no I doubt it" she said. I knew I was
in the wrong place right away.

Of course we are not expecting fairy tales just a positive approach
to treatment.

I think I will e mail the view and tell them they did a dis-service to their
viewers this morning..by stating that early bc is curable but bones mets
has a time line....I am really annoyed....with them..they did not mention
that Elizabeth will have the newest and best treatment. What is really
concerning me at this point is that she is a central figure in the media
and this can cause great mis-information and stress to those women
who do not have inter-net access or are isolated - also to their
loved ones. Such as older parents who do not use the inter-net
to obtain current medical break outs which fight this bc back and keep
in down.

Kind Regards,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-26-2007, 09:38 AM   #10
jones7676
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Terminal

I will not be "terminal" until I breathe my last breath. Period!
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Old 03-26-2007, 09:39 AM   #11
Patb
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Hi Jean and all

I totally agree with all the misinformation being talked about by everyone and all
the time. I feel like I can't get away from it and have no say. These experts should be very careful what they are saying on national TV as you say Jean lots of people don't have a group as we do and they do not have wonderful support
and people who will give them the correct facts and this is just going on and on.
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Old 03-26-2007, 09:52 AM   #12
Sherryg683
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OK, I'm going to be the wet noodle here. I do not in any way believe that cancer has been a "blessing" to me. And honestly say that it is hard for me to find one positive thing about it. This saying, I was diagnosed at stage IV. Maybe if I was diagnosed at stage I and felt there was a cure, I would be a little more positive. I have young children and it hurts like crazy knowing what the prognosis is...so sorry if I'm not doing a happy dance lately. But I have not given up on life or living. I do travel more, take more time to spend with my kids and do appreciate the beauty of nature. There's just always this sadness in me that I can't seem to shake. I will fight this with all I have, I have just had too many people that I love and care for die of cancer, so I know what i'm facing. My brother is in the last stages of melanoma at the moment, it's in his liver. He was a big strong guy, who was a body builder..now he's just weak and half his self. It's just been a hard year for me and hopefully I can shake what I've been feeling lately so that I can enjoy things more...sherryg683
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 03-26-2007, 10:07 AM   #13
Gerri
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Sherry,

I totally agree with you that cancer has not been a "blessing" nor is it the "best thing that has ever happened to me". Feeling your mortality is certainly not being negative - just realistic. But in reading your message I still see that you have HOPE and a strong will to live! I admit it is easier for those of us diagnosed at an early stage to have a more positive outlook. I apologize if at times I/we seem insensitive to those of you diagnosed at a later stage.

I am so sorry to hear about your brother. My heart breaks for you.

Keep fighting the fight!!

Gerri
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 03-26-2007, 01:24 PM   #14
Barbara H.
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Sherry,
First of all I am sorry to hear about your brother. I also agree with you, that at least for me, cancer has not been a blessing. I have grown from the experience, but would never choose to travel this road. I also have a daughter with autism. Yes, I have also grown from that experience as well, and it has made me a better teacher, but again, I would not choose this path in life. Unforturnately, there are many choices in life we do not make.

On the other hand, we do have the opportunity to make some decisions and choices when our lives are interrupted with adversity, and it is not appropriate for others to question our choices. That's why I feel the Edward's family should be supported for the decision they have made.

My thoughts are with you!

Barbara H.
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Old 03-26-2007, 01:45 PM   #15
jag
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Amen Cathy...couldnt Have Said It Better Myself....
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Old 03-26-2007, 10:19 PM   #16
Jean
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Dear Sherry,
I don't think your a wet noodle, we all hate this disease thats for certain.
I am very sorry that your brother is sick, life is so fragile. It is difficult
enough just to raise our children without the concerns of staying healthy
for them. Prior to dx. I think it is only natural for many to take for granted
how easy life really is as long as you are well. Then after dx. it hits like
a hammer - and the daily things in life become even more precious.

I believe that all the ladies of all stages feel the same bond, we hate the
disease and have realized that now everything else seems rather small,
and have a greater appreciation of life.

We all have bad days...and thats okay. By he way I know some very
nice wet noodles....I will keep you and your brother in my prayers.


Hugs,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-26-2007, 11:35 PM   #17
Chelee
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Jean, I was getting ready for an appt this morning and just caught the beginning of the "View". I heard the same thing you did and I was angry. In fact enough so that when I got home from my appt. I fired off an email to the View. (I never do things like that...this was my first time.)

Especially when some new person is just DX and hears something like that. The fact remains hearing something like that can take away any hope someone has....let alone the fact is that isn't true. I talked with a women at the ACS that was a 18 year survior with bone mets. As you already stated...there are alot of people that don't have access to the internet. I swear...I had absolutely NO hope at all until I found this board. God forbid had I turned the *View* on a year ago when I was DX and heard that. I was grasping for any hope and that would of really depressed me. It was this board that saved my life.

I am all for you firing off an email to the View...I did first thing today. I hope and pray they got flooded with mail over saying that. They might mean well...but that was so wrong. They said it like it was a matter of FACT. No exceptions. (Wrong, & they should be told.)

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 03-27-2007, 12:39 AM   #18
hutchibk
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Sherry, I completely understand why you feel like you do. Those feelings creep in on me, too, in a fairly erratic fashion. I will go thru a few months when I don't think about it at all (other than on chemo day) and then I will suddenly get a butterfly in my stomach one day and the worrying and sadness sets in. I do go to counseling (I was already going before diagnosis to work through family grief) and it is really quite a relief. I am learning how to compartmentalize those thoughts so that they don't take over for very long. It serves me no purpose to go to a dark place and stay there. My counselor is a gem and it is nice to have someone to help me carry the weight of all of this. I also belong to a wonderful young survivors support group which is a very optimistic and positive (albeit realistic) group of women. Their friendship is also tremendously important. I don't have children (well, I do, I have 2 kooky cat children) like you do, so I can't imagine how much heavier that makes it for you.

Tricia - you are such an inspiration to me. Not enough words to express it.

Cathy - thank you for the reminder not to buy into the terminal talk! I have heard it over and over again in the media during the last week - and it has pissed me off. LIFE IS TERMINAL. That's the real truth. Those without cancer are not going to live a forever, immortal life. Any one of us could be crushed by a meteor falling out of the sky tonight, or by a drunk driver tomorrow... we have to keep it in perspective. Cancer is not a death sentence. Life is. It is a disease that we struggle with, fight, manage and survive and oh, yeah, it might also shorten our lives. But then so might an airplane crash or a fall from a ladder or a water-skiing accident. And I learned early on to NEVER EVER EVER go looking for statistics! The 8-10 year stat that we keep hearing in the media is making me ballistic.
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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 03-27-2007, 05:20 AM   #19
MJo
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Sherry, I am very sorry your brother is going through this. I'm sorry you have to see it. I have three brothers and would be very upset if one of them were ill. (Funny, I was irritated at how upset they were when I was diagnosed!) I pray that there will be breakthroughs soon to eliminate melanoma. There is so much grief around cancer -- grief for ourselves and the changes in our lives, grief for loved ones. There is a lot of cancer in my family and I realize that, in some ways, my family has been shaped by grief over cancer. Take good care of yourself.
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MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 03-27-2007, 08:43 AM   #20
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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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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