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Old 05-24-2018, 02:25 PM   #1
ByGraceAlone
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Join Date: Jan 2018
Posts: 2
Smile Less Herceptin?

https://www.nytimes.com/2018/05/16/h...genentech.html

This is my first time posting, but I wanted to share this article that appeared in the NY Times. I am beginning my second round of Herceptin, and my oncologist has outlined the plan to include 40 weeks of Herceptin. The first time was pre-surgery, and ran 1 week with Herceptin and 2 weeks with Taxol for a total of 12 weeks. This was all pre-surgery and I'm happy to say that I have been declared cancer free: both my pre-op MRI and my post-op pathology report found no signs of the disease.

I am fairly new to this site, and I have found that there is not much posting being done lately. If anyone wants to start up a conversation with me, please feel free to do so!

Thank you...
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Old 05-25-2018, 05:23 PM   #2
donocco
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Re: Less Herceptin?

"Grace"

Im a pharmacist and Ill research this over the weekend. Im always skeptical about changes that save money. You start to wonder is the motivation patient safety of saving money or maybe both. Cetainly Herceptin heart damage is nothing to desregard but patients on Herceptin are carefully monitored.

Once there was a question about Subcutaneous Herceptin and I was sure it was about saving money. The research I did didnt indicate this

Paul
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Old 05-26-2018, 03:53 PM   #3
donocco
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Re: Less Herceptin?

I found an article in the lancet that states what the other article stated. It was quite odd what the findings were. They gave about 1700 her2 positive women 2 years Herceptin and another 1700 or so one years Herceptin and the 10 year survival rate got both groups were about 69%.

Here is the oddball things. They gave about 1690 women no Herceptin for the study. Assuming they were Her 2 postitve this seems unethical. Their 10 year survival rate was 63%. It seems not only does one year = two years but no Herceptin - both for all intents and purposes. Unless I read something wrong this experiment indicates that Herceptin rherapy offers no real long term survival benefit. This doesnt make sense. Ill reread it more carefully
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Old 05-26-2018, 05:08 PM   #4
donocco
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Re: Less Herceptin?

I printed it out to re-read it. They did start out with 3 groups of Her 2 positive women and they were planning to give one year Herceptin to one group, 2 years to another group and no Hercepotin to the 3rd. After one year there was a 46% less relapse rate in the Herceptin treated pts so all were treated with herceptin eventually. At first it seemed unethical. In this experiment with 5100 patients over 11 years the one year use 10 year survival rate was equal to the 2 year Herceptin use 10 tear survival rate. This may become the new norm considering the lesser chance of Herceptin related cardiac side effects. Only future experiments will tell for sure.
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Old 05-26-2018, 05:11 PM   #5
Carol Ann
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Re: Less Herceptin?

I had the full year of herceptin from Nov 13-Nov 14.



Question -- were all the women in the study diagnosed at the same Stage? And I agree that getting no Herceptin at all seems highly unethical, particularly since there is historical data (before Herceptin) to indicate what none given and the resulting survival rate would be.


Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 05-26-2018, 09:51 PM   #6
donocco
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Posts: 334
Re: Less Herceptin?

Carol Ann

The short article in the Lancet didnt mention stage but Ill research it further. The non Herceptin group did get the Herceptin after the first year so eventually all of the 5100 Her 2 positive patients got the drug The ethical question is did the pts who did not receive the Herceptin for a year realize this? Herceptin was approved around 2000 so its benefits were very much known. Why a pl,acebo group?

Oncologists tend to be ultra conservative as I perceive them in the literature I read. I cant imagine the majority of them halving the duration of Herceptin therapy based on one study. Unless there is economic pressure being put on them. How does your oncologist feel about this?
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Old 05-27-2018, 02:09 PM   #7
Carol Ann
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Join Date: Dec 2013
Posts: 1,015
Re: Less Herceptin?

Our posts must have just crossed each other!



I have my next, every 6 month appt with my oncologist next month (15 June) I will ask him what he knows about this, etc.



Thanks for posting back so quickly!


Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 06-04-2018, 07:31 AM   #8
ByGraceAlone
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Re: Less Herceptin?

Donocco & Carol Ann

Thanks for your responses.
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