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Old 07-06-2012, 09:54 AM   #1
Delaney
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Is this aa bad sign?

I am stage 4 with mets to lung(zapped), brain(zapped), skin(active), bone(active). I am on herceptin and navelbine weekly. I take 1 steroid (2mg) daily. I have the round puffy face and I now look 6 months pregnant which I put down to the steroid.
I sat beside a lady yesterday who takes 10 steroids and she looks slim and normal.
Why do I turn into a roly poly barrel, is it a sign that I am near terminal now? Has this happened to anyone else? Is there something my oncologist is not telling me? She tells me I have outlived the time she thought I had.
If anyone has any info on steroids please pass it on and thanks in advance.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 07-06-2012, 12:59 PM   #2
BonnieR
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Re: Is this aa bad sign?

Delany, I cannot answer you specifically except to say it is best not to compare ourselves to someone else. We all react so differently to things. The other patient may not be on the same meds. I hate that you feel it is a bad sign. I have always associated steroids with puffiness, if that is any consolation. I hope your doctor can offer some clarification and that you get some peace of mind. Keep the faith.
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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 07-06-2012, 03:35 PM   #3
tricia keegan
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Re: Is this aa bad sign?

Helen my Onc told me I'd gain a lot of weight and likely not lose it on steroids before I began chemo, in truth I lost a stone I could'nt afford to as was alreay quite skinny and petitte !
Nothing I have ever read has related weight gain to cancer progression at all and think this is usual for steroids and this lady may be having the reaction I had.

My hubbys younger brother has always had bad asthma and in some of his childhood pics he looks like the Michelin man from ther steroids he was taking but as an adult is vey thin so I do think we all are different in how we react to them.
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Tricia
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 07-06-2012, 05:38 PM   #4
CoolBreeze
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Re: Is this aa bad sign?

1. Your doctor doesn't know how much time you have. She never did. Nobody knows that. There are woman who have lived with mets for 10 or 20 years. They outlived their doctors expectations too.

2. Everybody reacts to steroids differently. They never made me gain weight but they did make me hungry. But, a friend of mine who took the exact same thing got the "moon face" look. I am terminal, she is not.

It doesn't sound like you trust your doctor. If you want to know where you stand in relation to your health, you need to make it really clear to your doctor "I want to know when my time is near." Even though your doctor may not know, they should always tell you what they think.

I think that it might help you to learn about the dying process. Maybe there is some information that your doctor or hospice can give you that will help ease your mind. If you are still responding to treatment, and if you are doing okay, than I am guessing you are nowhere near to dying. But I don't know you, you should ask your doctor. It doesnt' seem like you are going downhill based on your sig line anyway! You may have years left, who knows? Good luck!
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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 07-06-2012, 05:50 PM   #5
tricia keegan
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Re: Is this aa bad sign?

Maybe I missed something but saw nothing in this thread that related to a fear of death?? I think the poster was simply wondering why she's having weight gain which I think is the norm when taking steroids when other's are not Cool breeze
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Tricia
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 07-06-2012, 05:52 PM   #6
CoolBreeze
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Re: Is this aa bad sign?

Quote:
Maybe I missed something but saw nothing in this thread that related to a fear of death?? I think the poster was simply wondering why she's having weight gain which I think is the norm when taking steroids when other's are not Cool breeze
She said this, "Why do I turn into a roly poly barrel, is it a sign that I am near terminal now? "

And, she said this, "Is there something my oncologist is not telling me? She tells me I have outlived the time she thought I had."

I interpreted that to mean she was worried her death was near. What did you think it meant?
__________________
http://butdoctorihatepink.com

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 07-06-2012, 10:00 PM   #7
Pray
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Re: Is this aa bad sign?

My Dad has stage four lung cancer he had to take steriods for many months. His belly got large, once he was done with the steriods it took about 9 months for it to go down but it did go down. He has never been a heavy man. He to was unhappy with his belly and thought he would never lose it and he did. I hope this helps a little. Peace
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 07-06-2012, 10:07 PM   #8
Vicki revised
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Re: Is this aa bad sign?

A couple of years ago, prior to bc, I was on steroids for 2 months due to a severe allergic reaction. I currently get decadron iv 2x/week and have had the same se with and without cancer: weight gain, shiny round face, swollen abdomin, vision problems and lastly, an acne breakout.
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Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 07-06-2012, 10:11 PM   #9
norkdo
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Re: Is this aa bad sign?

Delaney, our hearts are with you. Many on here will pray for you, including me. I feel your fear.
I just finished reading an autobiographical book and yes, steroids during treatments can make you very fat. I was just looking at a photo of me getting chemo last fall and I was shocked at this gigantic round balloon of a face I had! thank God it is coming off gradually and getting better. Another side effect of the accompanying steroids the author mentioned was anger...I certainly had that too. Best of luck and keep us posted. We are with you.
Nora
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 07-06-2012, 11:32 PM   #10
karen z
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Re: Is this aa bad sign?

I think your reactions to steroids are more common than not.
Steroids are a bit notorious for such side effects.
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Old 07-06-2012, 11:51 PM   #11
Delaney
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Red face Re: Is this aa bad sign?

Thank you all for your replies. Am glad to hear that the effects eventually wear off when you come off the steroids. I just hope I get to a good enough place to be able to do without them.
Coolbreeze, I have been told I am stage 4 incurable but when I asked how long doc said he couldnt say as I was responding to treatment. Some days I feel good and enjoy it , other days I wonder is this the beginning of the end, when I feel bad.
I have always been very slim so I hate how I look now but my family say they just want to have me around so I must stop moaning. Its amazing that one 2mg dose of steroid makes me crave food all the time, I have to stop myself giving into the craving, it really tests my willpower.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 07-07-2012, 12:43 AM   #12
michka
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Re: Is this aa bad sign?

Hi Delaney. I am sorry you have that side effect. I know that for some it sounds minor to be concerned about our look compared to our other problems but I understand so well. Then we also think that the changes are bad signs when they are only the usual side effects. Why are you taking steroids today? Is it a part of the brain treatment you had? I am asking because I had no steroids with Navelbine. 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 07-07-2012, 01:08 AM   #13
dchips1
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Re: Is this aa bad sign?

Hi When I was on 2mg of decadron it elevated my blood sugars to the 200-300 levels, the "looking like you pregnant" moon face, extra hair on face, fat pad behind neck, are signs of what is a form of Cushings syndrome.
I gained the weight above the hips but lost great amounts of lower leg muscle, I was so weak I could not get off the toilet by myself!!

after tapering down off the steroids over a period of time, I was able to go back to diet controlled blood sugar regime, and I eventually lost the swelling and went to lots of physical therapy to regain muscle strength. Steroids have their place, and can be life saving, to reduce swelling, yet it is tolerated differently, by each individual.

Some people will be up all night working puzzles(ME), cleaning house with bursts of chocolate and over abundance of energy, or be so body aching that it is hard to do much at all.

No one can tell you when it is your time to go, that is between you and God! Most of us have defied the "death sentence" that was in the past that came along with stage 4 cancer.

With more and more new treatments, treatments tailored to the individual versus " the standard protocol", Lots of women are living with what I tell others is a Chronic disease. I monitor my health with frequent (dr, lab, MRI, Pet/ct) Appointments. If there is a concern we address, plan and execute the next step. This board was my saving grace for support, genuine medical research and treatments that I can take to my dr and discuss, what others are doing treatment/ side effects. Lurking without posting, praying, weeping and loving on others to help them in their journey

For me the known is better than the unknown, so I can face it , fight it and move on with my my life as a child of God, daughter, wife, mother,grandma, friend, advocate, caregiver, and a just plain stubborn Nurse patient. (I am a NURSE). I will be 45 this year.

If you are not comfortable to communicate with your oncologist, go find someone else if you can. It is OK not to be tied to negativity. (AS long as insurance, travel etc) allows to to change.

Sorry so Long, Good wishes and prayers to you

Darita
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dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 07-07-2012, 02:00 AM   #14
Jackie07
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Re: Is this aa bad sign?

Not sure if this is pertinent. But this AARP article emphasizes on the danger of 'belly' fat.

http://www.aarp.org/health/healthy-l...belly-fat.html
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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NICU 4.4 LB
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Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
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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 07-07-2012, 04:50 AM   #15
sarah
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Re: Is this aa bad sign?

Hello,
I agree steroids have many side effects. I gained 15 lbs on Taxol - regular chemo, I was a little surprised but the oncs said better to gain some weight than to lose too much so......
Also if you're uncomfortable with your onc's advice, get another opinion. that doesn't mean you want to change oncolgoists only that you want another opinion - often a good idea when one has a serious disease.
good luck
health and happiness
sarah
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Old 07-07-2012, 06:51 AM   #16
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Re: Is this aa bad sign?

Sarah,
Totally off point but......what a cute doggie!
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Old 07-07-2012, 08:13 AM   #17
Andrea Barnett Budin
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Look for the good signs

I was 4th stage w/a 9 cm tumor that required mastectomy and the removal of 21 lymph nodes. 3 yrs later I recurred and was, glumly told -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMO THERAPY FOR THE REST OF YOUR LIFE. I was devastated. Generally positive and full of belief, I crashed. The rest of my life looked like I wouldn't last past the expiration date on the milk in my refrigerator!

Then I saw other oncs. One said, What you have may be inoperable but that's a good thing. You'll be strong to take the chemo. You're young (I was 53 then) and in good health -- I silently laughed, Just a little cancer is all -- you'll do just fine, said onc #2. And regarding incurable, he said, Cancer is a chronic condition. You have flare ups, we treat, you get better. And he recommended Navelbine as it was a kinder gentler drug than the Taxol the first onc recommended.

Onc #3 recommended (in '98) Taxotere. Herceptin had JUST been approved, fast-tracked by the FDA a month after my metastasis and was added 2 mnths later, to verify the effectiveness of the chemo (checked by CT scan @ 8 wks). I asked this onc why Taxotere? I was of course a confused lay person fighting for her life.

Because what you have is a highly aggressive form of cancer and Taxotere is the most aggressive weapon we have right now in our arsenal. It was clear to me that I needed to fight fire with fire. Take the harder road. Give it my best shot.

The docs thought I had a year. 5 at the most. Less than a 15% chance of survival.

I have outlived my prognosis. Outlived my wonderful breast surgeon's life, may he rest in peace. Outlived a cancer center here in Boca. Lived to see both my dghtrs marry. Lived to see not 1 but 5 grandkids come into this world and be a part of their lives!

I don't think, Delaney -- such a beautiful name -- that you have an expiration date stamped on your foot!

See yourself far, far into the future. Believe with every day that you are going to be healthy and well. That you will survive. And thrive. Talk to your body all day. Tell it -- cause it is programmed to listen to your commands -- HEALTHY AND WELL. NO MORE CANCER. That's what I do to this day.

Look for the good signs. The love and support of your beloved family should keep you buoyed. Reach for outstanding results, for them, and of course, for yourself. You are a blessed Soul!

Sending you Love and Light,
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 07-07-2012 at 11:12 AM..
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Old 07-07-2012, 10:08 AM   #18
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Re: Is this aa bad sign?

andi: I am gonna bookmark your post. What a gift of compassion and hope you are. Thanks from me, Nora
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 07-07-2012, 11:08 AM   #19
Andrea Barnett Budin
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Stay strong, brave and determined

I too recently came across an old picture of myself, guess when I was on Dexamethazone ('98) -- taken the day before and the day of treatment. I could not believe how round my face was. And that was just a little bit of steroid, ev 3 wks.

On Taxotere I lost 33 lbs which just made me look all the better. Wig in place, I never had a bad hair day. People were complimenting my hair all the time. (I'd have mischievous images of me reaching up and plucking my wig off with two fingers and handing it to the one admiring my hair. Here, take it...) I lost the weight because I ate nothing. I should have lost more not eating for 8 mnths. Even after the mastectomy, I still weighed the same?! What gives?!

For 8 mnths I had constant queasiness and that metallic taste along with unstoppable bathroom drama from the other end. I forced myself to eat a handful of nuts and drink water, drink, drink, drink. Keep hydrated. This is seriously important. Your body needs to be hydrated. Have you ever seen a person who is dehydrated? Life threateningly ill...

But the puffy moon face and weight issues all come with the territory. Those who are stick thin in the chemo room can barely walk. That's not a good thing. In case of a famine, I am in good stead. Plenty of fat to live off. (Though I have recently lost 15 lbs w/my new holistic doc here.) Still, the days of skinny for me are a memory. A thing I took for granted, eating most anything I wanted. But I feel fabulous and look damn good for an old lady/4th stage cancer survivor.

So -- hang tough. I tell myself all the time -- STAY STRONG, BRAVE AND DETERMINED. At first, I didn't believe the first two so much, but I was certain of my tenacity. I come from a long line of stubbornness. Turns out that's a good thing. (And I found out that I am a lot stronger and braver than I ever imagined I was.) SO ARE WE ALL! I promise you. Dig for it. It's there... When you keep indoctrinating that mantra into your psyche, at the very least think of it as a goal!

Let your Spirit guide you. And stop listening to the voice in your head.



Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-07-2012, 01:40 PM   #20
tricia keegan
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Re: Is this aa bad sign?

Andi, wonderful inspirational post as always

Coolbreeze sorry for my slow response and I can see now why you thought that, I just took in the steroid/weight factor at the time I read it !

Helen hang in there and listen to your family as there's time to lose the weight when you're feeling better and hope Andi's post helped you
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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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