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Old 12-13-2011, 07:34 AM   #1
Jean
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trends that weight management is going to be important in treating HER2-positive brea

http://www.medicalnewstoday.com/releases/238952.php
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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 12-13-2011, 09:12 AM   #2
KristinSchwick
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Re: trends that weight management is going to be important in treating HER2-positive

Sort of dosen't surprise me that people who are overweight don't fare as well as those of a healthy weight. Fat produces estrogen, which can fuel breast cancer. And people who are overweight generally have more complicating health issues which can contribute to mortality and aggrevate side effects of chemo.
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 12-13-2011, 09:31 AM   #3
Jean
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Re: trends that weight management is going to be important in treating HER2-positive

Along with a cure would love for someone to develop a skinny pill...lol
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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 12-14-2011, 04:14 AM   #4
karen z
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Re: trends that weight management is going to be important in treating HER2-positive

Jean,
Thanks for posting info on this interesting and important study.
karen
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Old 12-14-2011, 11:58 AM   #5
TSund
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Re: trends that weight management is going to be important in treating HER2-positive

I'd like to know people's thoughts about this study vs weight gain with the estrogen fighting drugs (particularly arimidex, femara, aromasin). I seem to be seeing some pretty strong anecdotal evidence that bs patients are losing weight much easier after going off these drugs. Unfortunately, in addition to the inability to lose weight issue, Ruth has been having a heck of a time with these drugs with the other issues such as joint pain on Arimidex and hair loss,. on Aromasin. She's about to try Femara. I know these side affects are talked about on other threads, but I look at a study like this and wonder how the benefits stack up against the negatives. She's not by any means obese, but is definitely carrying extra lbs that she did not have pre-treatment.
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.

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Old 12-14-2011, 12:36 PM   #6
karen z
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Re: trends that weight management is going to be important in treating HER2-positive

I have gained too much weight since my diagnosis and "instant" menopause at 53 (wasn't menopausal going in). But this could be do to Femara, anti-depressants, stress/anxiety, and a relatively sedentary life (compared to some) as a professor- and with increased joint pain. My weight has gone up each year and it has been extremely difficult for me to manage. I think the key for me is more exercise- not easy to do when one feels achy but probably the best thing to do to relieve symptoms. I wish there was more research teasing out the unique contributors of weight gain (I have seen some fascinating studies on the effects of chemo on body composition) because many of us are walking around as examples of "bad studies" (i.e., with too many confounding variables going on to make sense of our own "data").
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Old 12-15-2011, 08:26 AM   #7
suzan w
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Re: trends that weight management is going to be important in treating HER2-positive

I agree with Jean, bring on the skinny pill!!! I have struggled to lose the 20 lbs I gained during all my treatments. I know20 lbs doesnt seem like much but I weighed 110 when this began and % wise, 20 lbs is too much for me. Now my thyroid is not functioning properly and that makes weight control much more difficult. Grrr
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 03-25-2012, 02:21 PM   #8
Firework
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Unhappy Re: trends that weight management is going to be important in treating HER2-positive

I started Herceptin Aug 11 same day as chemo. I began Arimidex January 2012.
My weight increased during chemo, lack of activity and diet choices (ate whatever I wanted.....pasta, ice cream and Indian food! Total gained 10lbs.
By Febuary I'd added 5 more! I've been doing water aerobics, walking 10,000 steps a day and have reduced food portions and sugar. I stay between 120 to 122. Can not get below 120!!!
My issue is with my wardrobe. I can't afford to go buy an entire wardrobe nor can I afford to buy a new set of uniforms for my job!!
Has anyone found a way to reduce their weight while on Arimidex/ Herceptin ?
Thanks,
Lorraine
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Dx'd 5/2011 IDC 1.6cm, stage 1, grade 2, er+pr-, HER 2, 0/2 nodes, P53 75%, KI67 90%
6/23 bilat mast, port 6/27 expanders, 8/08 AC x6, Herceptin 1 yr., Arimidex -Jan 1st 2012- 5 years, reconstruction- exchange surgery 3/30, nipples 7/2012? Then tattoos......
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Old 03-25-2012, 06:07 PM   #9
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Re: trends that weight management is going to be important in treating HER2-positive

If I knew, I'd be rich!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-25-2012, 09:35 PM   #10
AlaskaAngel
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Question Risk management

Risk management in regard to breast cancer is skewed.

Each of us is at some percentage of risk for recurrence, and the recommendations for treatment are based upon that risk.

They know that weight gain adds risk. They know that menopause slows the metabolism, and along with the lowering of hormonal levels of testosterone (which had been helping to sustain more muscle tissue and less fat tissue) that comes with menopause, plus the repeated periods of feeling ill, plus the contribution by steroid use during chemotherapy... contribute to weight problems.

But that risk is never added into the calculation in estimating risk in the first place.

So, the effect is that treatment is given to reduce the risk for recurrence by "x" amount....

And then that treatment causes weight gain that then increases the risk by "?" amount.

What I'd like to know is, how many people are going through treatment for a benefit that is then zeroed out by the weight gain? Or even worse, how many would possibly be recurring because the weight gain adds more risk than the amount of benefit that the treatment provided?

This is one of those never-discussed aspects of considering the pro's and con's of treatment, in part because they "don't know" who is going to gain weight and who is not, due to menopause.

Some people will immediately favor doing chemotherapy anyway, "just to be on the safe side". But without any way to define and understand or calculate the added risk, that is actually mostly a form of positive (or wishful) thinking.

Those who discuss risk with patients at time of choosing treatment blow it off entirely.

In the last few years, some of the cancer centers are starting to finally admit and emphasize the importance of proper weight management during and post-treatment.

I was of proper weight at time of diagnosis, and after treatment it took 6 years after treatment to lose the weight I had gained. As my metabolism continued to slow down even further, all of the weight came back despite doing much greater diet and exercise than I ever did up to age 51.

So as a stage 1 who did treatment, am I at greater risk because I did treatment? About the same risk? Less risk? And where in my medical record can I find that evaluation and calculation done in my behalf?

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED

Last edited by AlaskaAngel; 03-25-2012 at 09:38 PM..
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Old 03-26-2012, 08:19 AM   #11
Firework
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Re: trends that weight management is going to be important in treating HER2-positive

AA,

I really liked your post. Somethings I'd never thought about , risk factors using additional weight (as fat) increasing estrogen levels. It's a cycle isn't is....I take Arimidex....it lowers my estrogen....joints hurt.....painful to excersize as much (as apparently needed) thus first time I have a ton of belly weight. ....which increases the estrogen my body produces!
No one ever discussed this with me while making OUR plan to succeed over the cancer.

Thanks for posting,
Lorraine
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Dx'd 5/2011 IDC 1.6cm, stage 1, grade 2, er+pr-, HER 2, 0/2 nodes, P53 75%, KI67 90%
6/23 bilat mast, port 6/27 expanders, 8/08 AC x6, Herceptin 1 yr., Arimidex -Jan 1st 2012- 5 years, reconstruction- exchange surgery 3/30, nipples 7/2012? Then tattoos......
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Old 03-26-2012, 10:46 AM   #12
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Re: trends that weight management is going to be important in treating HER2-positive

this thread is comforting to me, even though we dont have any answers. It helps to know that others are in the same situation. I blame myself but need to remember that the meds play a big role and it is not my fault! 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 03-26-2012, 02:36 PM   #13
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Re: trends that weight management is going to be important in treating HER2-positive

I note that the study defines obesity as a BMI over 30. I weigh about 25 to 30 pounds more than I think I should, and I've been trying hard to get it off with very little to show for it. But even though I'm overweight my BMI is less than 30. That's a relief.

I did manage to lose the chemo/steroid-induced weight (about 12 lbs.) and am back to where I was before diagnosis.

To me there's a kind of triage protocol for weight management. My top priority is to eat healthy food and avoid eating anything with empty calories. Next on my list is to get some exercise every day. Third is to get enough sleep. I do think the Arimidex is making it hard to lose weight, but hopefully it's also being hard on the cancer.

I always like AA's perspective on things. Thanks, Angel.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 03-26-2012, 05:10 PM   #14
AlaskaAngel
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Question Re: trends that weight management is going to be important in treating HER2-positive

The intensity of trying to understand just the basics at first leaves out much chance to have the confidence to ask common sense questions.

Those who are younger have a harder time getting and staying genuinely postmenopausal, and are at some degree of higher risk because of that. More of them tend to be HR negative. They tend to be able to lose any weight that was gained during chemo, and keep it off because they have more testosterone and proportionally more muscle and less fat.

Most of those who are older and tend to become more genuinely postmenopausal with chemo are at higher risk for weight management issues, and tend to be more HR+. Maybe that is why they tend to recur later on, as weight continues to become more and more difficult to manage with slower and slower metabolism. In addition, by then whatever protective effect there is from doing chemo is far less.

What especially seems obvious is that there needs to be some calculation that estimates risk that includes BMI (or something similar) at time of diagnosis. Why would anyone fail to take into account the starting excess weight when calculating risk and benefit, especially for those whose likelihood of complete postmenopausal status with chemo is high to begin with based on age?

My older sister is in her 60's and obese, and the recommendation for chemo for her under the standard guidelines is the same as the recommendation is for someone who is age 25. What good is all the heavy-duty analysis of tumor, if they don't get the common sense picture to begin with in making recommendations for treatment?

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 03-27-2012, 05:49 AM   #15
Pray
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Re: trends that weight management is going to be important in treating HER2-positive

Angel, Your posts are always thought provoking! Thank you for your posts!
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Old 03-27-2012, 09:27 AM   #16
Hopeful
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Re: trends that weight management is going to be important in treating HER2-positive

AlaskaAngel,

I would just like to add that some of the steriods that are given as supportive drugs to chemotherapy also affect the metabolism by causing insulin resistance that can lead to diabetes, but, at the least, causes additional weight management issues for patients. This is a "hidden" risk factor that the medical establishment is also not addressing with patients entering treatment. It may also explain why metformin is being tested as a cancer treatment support drug that has the potential to reduce recurrence - it is addressing the steroid induced insulin resistance patients experience as a result of treatment.

Hopeful
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Old 03-27-2012, 09:54 AM   #17
AlaskaAngel
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Metformin

Hopeful,

Thanks for those reminders about steroids and about metformin! I'm also hoping that metformin is helpful in actually causing stem cell death, which chemotherapy doesn't seem to provide.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 03-27-2012, 02:05 PM   #18
AlaskaAngel
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A little hope....

... and a little chocolate, goes a long way....

http://www.nydailynews.com/life-styl...sEnabled=false
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 03-28-2012, 06:08 AM   #19
schoolteacher
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Re: trends that weight management is going to be important in treating HER2-positive

AlaskaAngle and Hopeful,

Thank you for all the things you do to contribute to this board. I enjoy reading all of your post.

Amelia
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Old 03-28-2012, 10:43 AM   #20
AlaskaAngel
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Re: trends that weight management is going to be important in treating HER2-positive

I appreciate all the comments very much. I am very thankful that others share the interest in giving thoughtful consideration of the underlying reasons for what to do or not do, to improve our own care.

My older sister has her health care through a major reputable institution. I accompanied her to see her surgeon once I was aware of the damage she had as part of her surgery. To me the complete failure to track her weight at every visit and counsel her about weight management was a strong indicator of the failure to recognize and actively deal with a definite issue involved directly with her breast cancer.

It is hard for her personally to be evaluated about her weight, and it is difficult to be someone who discusses it with her. It isn't about looks. She very much wants to live longer, and that is what it is about for me. I want her doctor to have the intelligence and concern to participate actively in that part of her care.

A.A.
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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