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Old 03-27-2007, 07:55 AM   #1
RhondaH
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Exclamation NOW Tony Snow has metastasized...

is it just me or is there anyone else that is freaking out about the number of recurrences, not just "high profile" based, but Her2 support group based? I WAS getting my "mind" back, but am now lossing it again. Have had a pain in my right rib area for approx. 3 weeks ( I find my pains take longer to heal) and thought it was due to "shlepping" a heavy backpack around at Disney World as well as heavy snow shoveling and NOW due to the fact that I KNOW due to E. Edwards, my onc is probably INUNDATED w/ women who have "rib pain", he would tell me to take an Ativan and sit down. I know there are people out there FAR worse off than me, but help me get my mind back. Thanks everyone.

Rhonda
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 03-27-2007, 08:20 AM   #2
Hopeful
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Rhonda,

Don't fall victim to the power of suggestion (easier said than done, I know). BC survivors are more suggestible than most people, I think, because of post traumatic stress associated with the initial diagnosis. This disease is harder on our minds than our bodies most of the time. There is no special vibe or signal the universe has given out to all early stage bc patients that "now" is the time to progress. The high profile cases are a statistical anomaly, like everything else. You need to stay grounded in your own good work against this disease and your particular prognosis. It's like trying to figure out how many coin flips that turn up tails it will take to get one to turn up heads - what happened in the past does not affect each new flip; the chance of heads or tails is still 50/50 each time the coin is tossed. Hearing about other patient's progression does not affect your specific chances.

Don't know if this helped, but it my own particular philosophy on the matter.
Good luck and stay strong.

Hopeful
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Old 03-27-2007, 09:17 AM   #3
Mary Jo
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Yes Rhonda it is very hard to hear of these recurrences as it hits each one of us in a personal way. It could be us. HOWEVER, we have to hang tough and stay positive.

I, like you, thought of all the oncologists out their hearing from women with rib pain. They must be absolutely inundated with phone calls.

Like the previous post said........"this disease is often harder on our minds than our bodies." Just learning to live within "our new normal" is a feat in itself.

Hugs to you Rhonda - Prayers for Peace AND a calm spirit.

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 03-27-2007, 09:26 AM   #4
Sandy H
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I keep thinking how they talk about cancer as being the worse and true it is bad but there are other diseases that are just as bad. I have a friend who is a nurse and she is taking care of a 49 year old. She has to be bath, fed and turned her in bed. She has MS. This lady is alert and knows everything going on around her but is unable to do anything. She needs care 24/7. Her husband is trying to work and keep the house going. She can live for years like this. Now, how awful is that? There are other situations but no need to go there. I was talking about this cancer disease and how painful it is for so many and a friend said, "well just think how painful it was for our Jesus when he was hung and died on the cross?" I can't be as bad as that. Well, that shut me up as I didn't know how to respond to her. I understood what she was saying but I am the cancer patient and she isn't so how does she know how much pain I am having? Its easy for others to make comments but some times it hurts more than making one feel better. This is just my thought for today. When I feel bad for myself I have to look around and someone else is worse off than me. Wishing you all a great day. 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 03-27-2007, 09:29 AM   #5
Mary Jo
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AMEN TO THAT SISTER.
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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 03-27-2007, 08:23 PM   #6
Jean
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Wink

Oh Rhonda,

I hear your pain....we are all upset when we hear about recurrances.
Hate that word...also hate cancer....but remember you have done
everything you can to treat yourself. You have changed your diet
and many other items in your life. (Vit., organic foods, etc.) Think of all of the positive things you have done in the past year alone!

Take a deep breath and hey, do you remember that body of
water we spoke about? And who is there? What is being said? Okay girl....

Love Ya,
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 03-27-2007, 08:29 PM   #7
caya
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Hi Rhonda,

Yes, it seems like the past few days have been news of recurrences, which of course gets everyone upset. But what we are not hearing is the thousands (probably millions) of us out there who are doing fine - lol, as "fine" as any of us could be with this crappy disease.
I'm sure your rib pain is nothing, but for ease of mind, I would get it checked out.
I just want you to know that I value all your input and posts, you are a remarkable woman.

All the best
Caya
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ER90%+/PR 50%+/HER 2+
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
15 Years NED!!
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Old 03-27-2007, 08:36 PM   #8
Barbara2
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Rhonda, does the pain come and go? Is it pain, or more of an ache?

I have had rib aches off and on since finishing chemo. Early on it concerned me a lot, had a bone scan which was negative, and I relaxed. The aches seemed to be much better after the good test results!

But I do still have those off and on aches. Both sides, front and back rib area. The ribs are real tender to the touch, also. So I try not to touch them, as it will make it worse. I especially have discomfort for a couple of days after having an echo done.

Hang in there! I sometimes use a heating pad on my ribs (at night) when they get to bothering/worrying me too much. There has been some talk (in the past) of heat killing cancer. So while I apply the heating pad, I rationalize that maybe cancer cells are being killed, also. And they do seem to feel better after the "treatment."
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 03-28-2007, 12:54 AM   #9
Sherryg683
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I have had rib pain since my surgery in December 05, all my scans are clean but my ribs continue to hurt. Not as much now as in the beginning but they are still sore. Since I've been on this Neurotin for my shingle pains, the rib pains aren't quite as bad. Hell, I pretty much hurt all over these days with all this infected nerve crap, so I don't know which way is up. All I can go by is that my scans were clean in February. I was having terrible shingle pains when I got my scans and the radiologist told me that they might be picked up on the PET/CT scan...great that was all I needed a scan that would light up all over my right side, that would be enough to send me over the edge....luckily they didn't show up. I still get this fantom pain where my gall bladder is that burns like crazy, had this when I was on chemo. I had it checked out many times and they can't find anything, it just burns. I've come to accept that with this cancer is going to come all sorts of pains we can't explain but are pretty much nothing to worry about...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 03-28-2007, 10:10 AM   #10
RhondaH
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Smile Thank you EVERYONE for your posts...

They do come and go and more of an ach...nothing sharp, though about 2 weeks ago, when I was putting something in the pantry, my entire waist felt like someone had tied a belt around it and squeezed it. It hurt for a while after, but has gradually gotten better. Also, a month ago I developed a red circle "rash" on my gall bladder scar (right below my cleavage), hasn't gotten bigger, though not smaller either, fades and brightens. My mom thought maybe I have shingles, but odd only one rash. Still feels tight around at times, but seems to be going away. I just got done having lunch with a coworker who just got done w/ neoadjuvent and is having a mastectomy tomorrow (poor girl, her daughters dad committed suicide before Christmas...she was dx in Aug 06 and is just NOW getting to surgery as her tumor literally wraps around to her back... and now her daughter tried to commit suicide this passed weekend...and we think WE have it bad) and we BOTH just want normal again. Thanks to all of you and BIGGGG hugs.

Rhonda
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 03-28-2007, 12:47 PM   #11
hutchibk
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It's crazy, this flurry of recurrances... I have a dear childhood friend from my army brat days in Germany whose hubbie went into the hospital on Sunday with sudden high fever and very sick. He had recently finished treatment for bladder cancer. They found that it had very quickly moved into his liver. He started gemzar/cisplatin yesterday. And she just finished her first line treatment for HER2+ b/c about 6 months ago. She is optimistic, but a basket case. I can't blame her.
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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 03-28-2007, 12:53 PM   #12
MCS
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Rhonda,

I have side rib aches also. It scares the #%?*? out of me but I do get them when I'm sitting around too long- maybe it's old age then it goes away. But when it hits, the old age is never questioned, it's always the C.

I know it's hard not to think of recurrence or new primaries when you hear on tv all the news.

However, the only and I mean the only good thing about this is that everyone know how devastating it is. CBS is doing a two part series on cancer costs and will discuss the cutback in funding so the fact that all know that there's need for funding and research.

Love

MCS ( maria)
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Old 03-28-2007, 11:05 PM   #13
sassy
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I really don't think I'm falling victim to the recurrence fear, but my ribs have been sore for the last three weeks. Mine seems much like you describe Barbara, not sharp pain, but sore all around and it moves around some.

I had to switch to monthly Lupron shots in January and it has been a rollercoaster ride since then. My body is trying to come out of menopause and the Lupron is fighting to keep me in and I feel like the loser on both ends.
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PRILOSEC SETTLEMENT

Last edited by sassy; 08-22-2011 at 09:12 AM..
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