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Old 12-12-2016, 10:55 AM   #1
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Effectiveness of Estrogen blockers

HI Everyone, I"m hearing different views on the % of effectiveness of Estrogen blockers like Tamoxifin and Arimidex. Does anyone know how effective these blockers really are? I've heard some ladies get off the drugs as they believe their effectiveness was to low to justify the side effects. I appreciate any responses as I forgot to mention this to my onc at my last visit and don't see him again for 4 months. thanks
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-12-2016, 01:31 PM   #2
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,045
Re: Effectiveness of Estrogen blockers

Hi Hadit,

Can you call his office and ask his nurse to ask him for you? I think you really should, for your own peace of mind.

I have read that overall, Arimidex decreases the risk of recurrence by 50%. Again, as we've discussed on other posts, it is each patient's individual risk that matters in the end, and that is very dependent on the stage/histologic grade, etc.

For example ... one person's risk of recurrence at Stage 3 might be 40%, another at Stage 1 only 20% (I am randomly picking numbers here, I really don't know) ... so the Arimidex would decrease it to 20 and 10 % respectively.

There is no one answer. Different women also experience different side effects which may or may not be tolerable to them. Again, based on their own individual risks.

For example ... joint pain is one of the most often described and experienced side effects of Arimidex, along with hot flashes.

I have been taking Arimidex since April 2014 and have had ZERO joint pain. Hot flashes, yes ... and extreme fatigue, which is a documented side effect but one only experienced by 10% of the women taking the drug.

Are you on Arimidex or Tamoxifen now? Your history doesn't say that you are.

I wish I could stop taking it ... but with TWO estrogen positive tumors, one in each breast, I just don't dare.

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 12-13-2016, 06:01 AM   #3
TiffanyS
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Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

I took Tamoxifen for a short period of time, but stopped after I had a recurrence and started chemo again. My nurse practitioner told me that it didn’t work for me, as I had a recurrence, and that I would probably be given something else once I’m done this round of chemo. I am guessing it will be Arimidex, but I don’t know for sure.

I experienced joint stiffness while on Tamoxifen, and at first I thought it was a lingering side-effect of the chemo, but, I realized it was the Tamoxifen when it went away as soon as I stopped taking it. I agree with Carol Ann. If you are in doubt, call your doctor’s office and ask him/her or your nurse practitioner. My nurse practitioner is pretty good and calling me back when I leave her a message.


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 12-13-2016, 06:31 AM   #4
Hadit
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Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

Thanks ladies for responding. I"m on Arimidex since June 2016. I will update my info. I did try to google this info but couldn't find any. My onc is sensitive to being questioned about what her prescribes. We live in a small town and all our onc's work under one company so changing dr's after all I've been thru seem fruitless. I experience hot flashes and muscle/joint pain from it and take Neurontin ( 300 mg) twice a day for it. I have a mammo scheduled for March 2017 as there's an "area of concern" they are watching in my other breast. I just never thought to ask about how effective Arimidex is in keeping my cancer from coming back. More things to worry about......
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-13-2016, 09:31 AM   #5
Debbie L.
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Join Date: Jul 2006
Posts: 463
Re: Effectiveness of Estrogen blockers

Just off the top of my head, my recollection is that the trials of endocrine treatments show a relative reduction in recurrences in the range of 30-40%. The higher one's risk is, the more the (absolute) benefit. Also, the higher the ER/PR of the cancer is, the more the benefit.

So for example, if your risk of recurrence after surgery and chemo/anti-HER2 agent is small, say 10% -- the absolute benefit of endocrine therapy (using the 30% reduction figure) would be about 3.3% (1/3 of 10%), bringing your risk down to 6-7% (10% minus 3.3%). On the other hand, if your risk of recurrence is higher, say 60%, then endocrine treatment would add a much bigger benefit, bringing your risk down to about 40% (1/3 of 60% = 20% and 60% minus 20% = 40%).

In addition, there's the spectrum of ER/PR positivity to consider. Those with lower levels of ERPR probably get less benefit from endocrine treatment (and vice versa -- high ERPR levels in the cancer probably benefit more), although this is harder to pin down with actual numbers.

And for those who had lumpectomy or a single mastectomy (iow, those with breasts), these drugs also reduce the risk of a new primary.

These figures are for very large groups of women, with diverse details of diagnosis. They are used to guide treatment decisions but because each person and each cancer is different, the figures are not super-accurate for any one individual.

Here's an article that starts out with discussions (and tables) about the early trials of Tamoxifen and ovarian suppression (and has some recurrence reduction figures). Then it moves on to the more recent studies that try to tweak which agent offers the most benefit, and what is the best duration of treatment, which are the questions being asked today.

Each person will base their decision about endocrine therapy on several factors, including risk of recurrence and experience with side effects. If side effects are too much, many find that switching to a different drug, even within the same class of drugs (so for example switching from the AI Arimidex to the AI Letrozole) may decrease side effects. The side effect profile of Tamoxifen is a bit different so if you can't find an AI that works for you, switching to Tamoxifen is also an option.

Hadit, if you don't feel that you can ask your onc for explanations and information, it would be worth trying a visit with a different oncologist, even within the same group. We all want a competent oncologist directing our care, but we also deserve one we feel we can talk to. And that last bit is more of a personality-fit issue than a competence one, so who is "good" in that way will vary for each of us, and you won't know who is a good fit for you without trying out other providers. Good luck!

Debbie Laxague
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Old 12-13-2016, 03:08 PM   #6
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

Thanks Debbie for this information. My er was 99% and pr 30%. My onc does answer questions BUT I ask things of him I don't think others do. He once said " you're asking very good questions". He knows my son is going to med school to be an oncologist ( this before I was ever diagnosed... weird huh? ) Anyway, I think he finds me challenging and his ego gets in the way. He's very knowledgeable and I appreciate that he took me as his patient as he is highly regaurded. I'm just a very inquisitive person and want answers.
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-14-2016, 05:48 AM   #7
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

Hi Hadit, I noticed in your footer that you’re awaiting approval for Hyperbaric Chamber Oxygen Therapy. I have never heard of this therapy before. Can you advise how it works?



12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 12-14-2016, 10:41 AM   #8
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

Tiffany, I go today for an EKG and chest xray to make sure all is clear. You must be 6 months out from your last chemo. The hospital gave me the run around about my ins not covering this as I have radiation induced Telangiectasia. Bascially I got so burned from radiation and was on a gout med ( I got gout from chemo) and the two don't mix. I developed a severe infection and ended up in ICU for 3 days on morphine. Anyway, the results of all this treatment gave me UGLY spicder like veins and oxygen therapy SHOULD help in opening up the capilaries. THere is a code: L59.9 for approval when a dr writes a script referral. In the meantime, I'm going to a vascular surgeon every week where I get Sclarethearpy ( over 50 injections ea time) to help clear up this mess. Everyone said radiaton was a breeze, well NOT for me. I hope this helps as my ins runs out the end of Dec and I've already med my deductible. I'll let you all know more when I do. thanks.
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-14-2016, 12:00 PM   #9
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

Hadit, I’m sorry to hear that you got burned badly from radiation. I got a little bit of a radiation burn, but my doctor recommended Bio-Oil, and it worked wonders. Otherwise, radiation was a breeze for me. I am still getting chemo though. I had a recurrence at the end of August, and started Herceptin, Perjeta and Taxol at the end of September. Right now I get chemo two weeks in a row with a week break, and then two weeks in a row. I’m getting a four week break over the holidays, and then I start up again in January for four to six doses. I really hope the oxygen therapy helps you with the spider veins, and that things work out for you regarding your insurance. Keep us posted.



12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 12-14-2016, 02:51 PM   #10
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

Tiffany, I just got back from the hospital and it appears I"m approved for HBO (Hyperbaric Oxygen Therapy). Now my concern is.... Will ins cover this? Dr ordered 40-60 rounds! I start Friday so I may get 10 "dives" in by year end. That leaves 30-50 more dives and it takes at least 20 to get results. Can you share more about your tumor markers? This is the very question I asked my onc on Wed and he said he would test me sometime next year. What are these tumor marker tests? Are you triple positive? thansk
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-15-2016, 06:01 AM   #11
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

When I was diagnosed, I was told that I was stage 3, grade 3, HER II Positive, with high levels of estrogen and progesterone. My surgeon never used the words triple positive, but I think I am based on what he told me. I’ve never actually seen my pathology report though.

I’ve done two different tests to determine tumour markers. One is called CEA (carcinoembryonic antigen), which measures the amount of this protein that may appear in the blood of some people who have certain kinds of cancers, like colon and rectal cancer, pancreas cancer, breast cancer, ovarian cancer, or lung cancer. My doctor told me that 0-4 is normal, and anything above 4 may indicate cancer. I’ve done this test twice, and both times, my tumour markers were normal. Unfortunately, not everyone who has cancer gets elevated CEA levels, so my results may not mean anything.

The second test I did is called CA-30-15. This Cancer antigen is a protein made by a variety of cells, particularly breast cancer cells, and it moves into the blood where it can be measured. CA15-30 levels are higher than normal in most women with breast cancer that has spread to other parts of the body, however, not all types of breast cancer will cause CA 15-30 levels to rise, as some types of cancer cells don’t over-produce the antigen. My doctor told me that anything under 30 is normal, and my results were 19 both times.
My doctor told me that they don’t use tumour makers to determine if someone has cancer, they just use them as an indication that something might be wrong. For instance, my tumour markers have been normal so far, but, if ever they go up, then my doctor knows that something is wrong, and will send me for tests, etc. Some doctors don’t use tumour markers at all, as they are not an accurate way of determining if treatment is working, etc.
I’m glad your doctor approved you for HBO and I hope your insurance will cover it!



12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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Old 12-15-2016, 07:23 AM   #12
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Effectiveness of Estrogen blockers

I also was not told I was triple positive. Told invasive Her2+. Eventually found out I was high Er+ & PR+. Put on Letrozole (Femara) just after chemo finished. Joint stiffness was the worst side effect. Taken off Letrozole last December when bone met found. Stiffness went away within a few weeks so know it was letrozole causing it.
Have been on Xeloda since Dec 15 but I am concerned that this is not enough when high PR+. Oncologist said she would maybe put me back on an AI later but can't give with Xeloda. Anyone else been told this. I can't shake the feeling that I should be on an AI!
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Old 12-15-2016, 09:25 AM   #13
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

Tiffany, thanks for sharing. My onc doesn't give tumor markers much weight. Now I understand why. I just went in for my exam and he drew blood and did a physical check. He said all appeard normal. I had to negotiage with him to see him again in 4 months as he wanted to schedule 6 months and I just finished Herceptin in OCT!!!! I thought we got every 3 months? I did agree to keep this damn port in for another year. I"m scared. Now I have to go in for Sclaretherapy shots today and argue with dr as to why I was denied HBO 6 weeks ago and could have completed all treatments now that I met my deductible this year and would have had NO co-pays! ARGGGG!
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
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Old 12-16-2016, 05:52 AM   #14
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

Based on what my doctor told me, going for a follow up every six months is the norm unless there’s a recurrence, and the visits would be after you got all of your scans so you could discuss your results. I am glad you fought with your doctor to get to visit him every four months, if that’s what you want.
I live in Canada, so I don’t have to worry about insurance for most treatments. I have to put some drugs through my insurance, like neupogen or neulasta, but all of my chemos, as well as Herceptin and Perjeta, are covered by our health insurance. The only thing not covered yet is TDM1, however, I bet it will be covered in a few years, once it’s been on the market for a while. I hope your insurance will cover your sclaretherapy shots.


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
TiffanyS is offline   Reply With Quote
Old 12-16-2016, 09:31 AM   #15
Hadit
Senior Member
 
Join Date: Nov 2016
Posts: 50
Re: Effectiveness of Estrogen blockers

So I've seen where others have experiened no air growth on their under arms and legs and no longer perspire under their arms since treatment. Can anyone explian why? Is it due to chemo or estrogen blokers? Just curious.
__________________
Dx Sept 2015, triple positive, stage IIA, grade 3, Her2++. right breast, no family history (only 54)

Oct 2015, started chemo including Herceptin &Perjeta
Jan 2016, stopped chemo after 5 of 6 rounds due to ulcer
Feb 2016, developed gout from chemo , lumpectomy, clear nodes, went on strong meds for gout
April 2016, started radiation
May 2016, had to stop radiation due to severe reaction to gout meds and radiation. Rushed to ICU, on morphine for 3 days with severe infection
June 2016, Started Arimidex
Aug 2016, Developed a severe case of Telangiectasia
Nov 2016, Sclerathearpy (weekly injections) for gross bloody spider viens from radiation.
Awaiting approval for Hyperbaric Chamber Oxygen Thearpy
Hadit is offline   Reply With Quote
Old 12-16-2016, 09:40 AM   #16
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Effectiveness of Estrogen blockers

I lost all of my hair after my first round of chemo, from Mar-Jun, but as soon as I was done chemo, it all grew back. I’m getting a low dose of Taxol now, but I have not lost any of my hair from it, although the hair on my head has thinned out a bit. It’s still growing though. I have never stopped perspiring, even while going through treatment.


12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan scheduled for December 14. I can’t wait to find out if the Perjeta is working!
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