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Old 02-12-2016, 10:19 AM   #21
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Met with the surgeon this morning and discovered that an MRI won't tell us a thing about the DCIS until the biopsies from Monday have healed. And, I also had blood drawn this morning to determine the HLA-A2 type. This blood test won't be back for two weeks (outside lab required). SO, I decided to move the surgery to March 18th to give time for the blood work to be back AND to give time for the biopsies to heal before doing an MRI. My doctor seemed comfortable with the delay since the DCIS doesn't appear to have changed since September. I know I am courting danger by waiting, but I would also like to be involved in this clinical trial if I qualify. ....and I would like the MRI to be able to show the extent of disease before heading into surgery!

I'm holding my breath. Hoping I'm doing the right thing. It is a calculated risk, but it seems like a reasonable one.

My flight leaves tomorrow to take me back home! SO ready to back home with my kids and husband!
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Old 02-12-2016, 02:22 PM   #22
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

It sounds reasonable to me ... I am keeping my fingers crossed that you can participate in the clinical trial! What is the HLA-A2 type test used for?

Have a good, uneventful flight back home to your family!

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 02-18-2016, 01:19 AM   #23
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Carol,
The HLA-A2 is a blood marker much like A, B, and O except it is usually used in transplant patients to determine if the organ will be accepted or rejected. This clinical trial uses the HLA-A2 instead of the Dendritic cells that were to be used in the first trial I applied to. Basically these markers are used to send "cancer signals" to the body's own immune system so that it can recognize and fight cancer...and in particular HER + cancer.

From what I have read, it sounds like the original trials were successful and there is now a phase 3 trial for those with further advanced cancer. The particular trial I am applying for is a phase two trial because it is for DCIS rather than the invasive cancer that is in phase three trials right now.

The trial opens March 1st, but I have been in contact with the lead investigator out of Texas who advised me to go ahead with the HLA-A2 testing (if I could afford it) now so that we would be "good to go" on the first if I have the HLA-A2 tissue type. If I waited until March 1st for testing, the trial would pay for the testing, but it would then mean a further delay waiting for results. .....and I've already waited 6 months since this DCIS was first discovered. Waiting isn't something that I want to do if it can be helped!

Here is the link to the "gov" site for this trial:
https://clinicaltrials.gov/ct2/show/...accine&rank=69


The down side is that it IS blinded meaning that 50% of applicants will receive the placebo. Bummer.
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Old 02-18-2016, 07:51 AM   #24
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Thanks for explaining this! And doing what you can to be part of the trial!

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 05-01-2016, 02:21 AM   #25
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Just a quick update. I've been MIA since February. I had the HLA-A2 blood typing done and the results came back the end of February, I was positive meaning I qualified for the trial out of Texas. It was scheduled to begin March 1st but IRB approval kept getting delayed. Every two weeks or so, I was told that it would be about two weeks! Finally the lead investigator sent one of my emails to the IRB board members! One responded with "two weeks." Actually made me chuckle. .....that was two weeks ago! So, I have now waited three months to join this trial.......... shesh.

I have an appointment scheduled at Mayo for May 9th. I fly out on May 8th.....I didn't realize that May 8th was Mother's day when I made the airline reservations. What a way to spend Mother's day!

I will admit that I'm a little nervous. It will have been three months since my last evaluation at Mayo. At that time there was no change evident from the November evaluations. (six months with no change.) But here I am three months later and who knows?

Unfortunately I'm making the trip alone this time. It is the middle of farming season so my husband can't go with me. I'm a little bummed. Okay, I'll admit it, I'm melancholy.

Sure hope we don't find any progression......
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Old 05-17-2016, 12:54 AM   #26
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

I am extremely hesitant to post this and in fact, have been debating it for a week. I've been waiting for the clinical trial that I applied to, to start! It keeps being delayed waiting for IRB approval. Since three months had passed since I was mecially evaluated, I chose to get a thorough evaluation done again. My oncologist said there was "no change" which I thought was fantastic! ....until I read her report (I always read my medical file) and discovered that in fact, my cancer has shrunk. Yes, that is correct, it has shrunk in size and I haven't had any treatment yet. At first I thought that perhaps the size change was so small that she didn't see the point in commenting about it being smaller, but when I compared the measurements, I discovered that it is 30% smaller in volume. That seems very significant to me. I am disturbed that my doctor didn't see the need to tell me that my cancer has shrunk and instead told me there was "no change." I feel a little manipulated.

I have been wracking my brain trying to figure out WHY she would have told me there was no change when her own dictation says there is and the radiologist report also says there is. The reports are in agreement and both clearly express that the cancer is now smaller than when first diagnosed.

I've also been trying to figure out why this cancer of mine has shrunk. Is it something I am doing? I am on a ton of supplements, all of which I have researched extensively and am wondering if by chance they might be the cause. I don't know, but I can't think of any reason why this cancer would shrink. But it most certainly has.

My variety of cancer happens to be ER-, PR-, HER2 3+, KI-67 of 30% (I think). This kind of cancer should NOT shrink. It is usually aggressive. But, here I am NINE months after diagnosis and it has regressed without formal treatment.

I am puzzled on several levels. Any thoughts?
Thanks
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Old 05-17-2016, 08:58 AM   #27
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Ok ... I am as confused as you are, bottom line I would ask that onc to explain her notes versus what she has told you!! I would feel manipulated too. Plus ask her how/why it regressed!!

Thanks for posting, please don't feel you can't tell us what's going on, I say YAY!! and let's hear the rest of the story now!!

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 05-17-2016, 06:30 PM   #28
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Thanks Carol! I hesitate to share because my story is so small and simple compared to what many of you are facing. It doesn't compare and seems so petty of me when I think of the long road many of you have traveled.

While I love my oncologist, she does have her mind set at times and does try to "persuade" by her choice of words. For example, when I first came to her, she was my second opinion and I demanded a second biopsy. She wanted me to go straight to surgery without a second biopsy. When I said I wouldn't have surgery without a new biopsy first, she said she was ordering an "excisional biopsy" for me. Since I was relatively well informed I asked how that differed from surgery! She sat for a moment just looking at me and then said she would order a stereotactic biopsy. Yup, this isn't the first time she has tried to manipulate me by her choice of words.

Knowing that, I'm not sure I would get an honest answer if I asked her why she said there was "no change" when in fact there was. I stay with her though, because she is an excellent clinician well respected in her field. There is no one else I would want doing a clinical exam for me. And while I need to sift through what she says to me, her clinical notes are always accurate and complete.

What I have learned over the last 9 months, is to read read read. Read my medical chart, read my radiology slides myself, read the medical journal articles out there, etc.

My best guess is that she is afraid that I will delay surgery or treatment if I know that the cancer has shrunk. She was VERY unhappy with me when I told her that I wasn't going to do anything until one of two things happened. Either there was clear progression of disease OR MD Anderson Cancer Center was granted IRB approval for the clinical trial. I basically told her it was MY decision and MY risk to take. She then had to tell me the results of the tests I had had earlier in the day. That was when she told me that there had been no change.

That still doesn't answer the question why though. Why has it shrunk? I would like to try to find an answer to that question because whatever it is that I'm doing......I want to keep it up!
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Old 05-17-2016, 06:36 PM   #29
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Please don't feel that way! You are not being petty at all! It ALL sucks!! And what you are discovering through all your research and interactions with your onc ... may just help someone else who comes here looking for info. Plus you deserve support too (see above re: suckitude of all of this. )

Don't let her off the hook. She works for you, not the other way around. You deserve answers, you are the one who has to deal with all the consequences of every decision made, not her.

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 05-18-2016, 08:56 AM   #30
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Also ... what supplements are you taking?

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 05-18-2016, 05:48 PM   #31
donocco
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Join Date: Oct 2013
Posts: 454
Re: I think I'm in trouble!

VDC

Medicine has changed since insurance controls it. Not much we can do about that.
Maybe it was the supplements that produced the shrinkage. Let me suggest two
things that might have anti-metastatic action- Tagamet (Cimetidine) and Berberine.
Speak with your oncologist if its ok to take these

Paul
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Old 05-21-2016, 11:16 PM   #32
VDC
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Join Date: Jan 2016
Posts: 122
Smile Re: I think I'm in trouble!

Carol,
Oops missed your second question! For some reason I am not receiving the emails that tell me when someone has posted a reply! So, as for supplements that I am taking....


It is a smorgasbord!

Co Q 10 (200 mg morning, 200 mg evening)
5000 Vit D (morning)
Flaxseed oil (1000 mg daily)
Green tea extract (500-600 three times a day)
Curcumin (2500 three times a day)
Aloe Vera
Berberine
Cinnamon
Evening Primrose oil
Cranberry Extract
Grape seed extract
Rosemary
Aspirin
IP6 and Inositol
Trans Resveratrol
Quercetin
Flaxseed Lignan
Indole-3-Carbinol
Spirulina
Niacin
1 oz pecans daily

And I take:
Levothyroxin
Atorvastatin
Cyclobenzaprine
Estrogen/Progesterone (I know........)

Some of these are NOT indicated for hormone sensitive cancers! Mine is ER-, PR- Her2+ so the hormone thing isn't as important. One supplement that could make hormone sensitive cancer worse is the Trans Resveratrol. But for we "negative" gals I think the research is more in favor of it.

If you want to know the dosages of these I can look them up, I just can't remember off the top of my head while I am sitting here typing!

Some of these I chose specifically because they seem to be indicated for reducing Her2 neu activation which is a good thing for HER2+ gals.
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Old 05-21-2016, 11:29 PM   #33
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Paul, Ah, yes ask my oncologist. I keep her well informed and wouldn't think of taking anything without her knowing. But......as for the asking part? Not so much. Unless she can provide me with research indicating why I shouldn't take it........I consider it my choice and usually I have research supporting my decision to take them. Most of the time I have more information than she does when it comes to supplements.
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Old 05-22-2016, 05:01 PM   #34
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Thanks for posting your list!

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 05-23-2016, 12:49 AM   #35
VDC
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Join Date: Jan 2016
Posts: 122
Re: I think I'm in trouble!

Carol Ann,
I just refilled all my supplements and made a masterlist of what I take, when I take them, and the dosages! So, here is a more complete list!

Breakfast:
2 tablespoons ground flaxseed (I detest flaxseed)
Indole-3-Carbinol 200 mg
CoQ10 400 mg
Curcumin 2,320
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Flaxseed oil 1000 mg
Cinnamon (Ceylon) 1000 mg
Evening Primrose oil 1,300 mg
Rosemary 275 mg
Cranberry extract 12,500 mg
Green Tea Extract 500-600 mg
Aloe Vera Gels 100 mg
Vit D 5000 units
Aspirin 325 mg
IP-6 & Inositol: IP-6 800 mg, Inositol 220 mg, Calcium 130 mg, phosphorus 190 mg,
magnesium 40 mg
Trans Resveratrol 500 mg
Quercetin 500 mg
Spirulina 3000 mg

Levothyroxin (prescription for thyroid)


Lunch
IP-6 & Inositol: IP-6 800 mg, Inositol 220 mg, Calcium 130 mg, phosphorus 190 mg,
magnesium 40 mg
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Flaxseed lignans 51 mg lignans
Curcumin 2,320 mg
Rosemary 275 mg
Cinnamon (Ceylon) 1000 mg
Green tea extract 500-600 mg
Grape seed extract 400 mg


Snack
1 oz pecans (I hate pecans)


Dinner
Curcumin 2,320 mg
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Cinnamon (Ceylong) 1000 mg
Green tea extract 500-600 mg


Bed time
Aloe vera gels 100 mg
Evening Primrose oil 1,300 mg
Cranberry extract 12,500 mg
Grape seed extract 400 mg
Melatonin 20 mg
Niacin 500 mg (timed release)
Aspirin 325 mg
Cyclobenzaprine (prescription)
Atovastatine (prescription)

I THINK this is complete! Most of these, although not all, are relatively high dosages.
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Old 05-23-2016, 09:27 AM   #36
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: I think I'm in trouble!

Thanks!

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 05-25-2016, 09:35 PM   #37
VDC
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Re: I think I'm in trouble!

Carol Ann,
You are more than welcome Any time!
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Old 05-28-2016, 03:23 PM   #38
norkdo
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Re: I think I'm in trouble!

Hi VDC! You are a wonderful writer, and obviously highly intelligent and informed. I enjoyed reading your journey, and felt great sympathy for you as I recall all the stress and terror of being diagnosed, etc.
I was stage 3b on diagnosis, did the cure for the next year and a half, including a failed reconstruction, and have been clear of cancer for five years. I want to ask you to reread the wonderful responses you've received on this thread, and kind of read between the lines if you can. I am in awe of the good advice I see on all these pages.
I say this because I hadn't been on this site in many months, and the first thing I check on is (no, no this isn't scare tactics, just my experience) the survival of some really good women I recall helping me over the past five yrs that I've checked in here, and esp those from that first year or two.
When I read about another death of a super smart lady with HER2 positive cancer who has been on the boards helping others, I keep saying "why? why? she was so young! why?" etc. This unknowing is what I want to give to you.
Women with exactly the same diagnosis that I had, and who found out they had cancer around the same time that I did, are no longer here. Pause for effect. I scratch my head, I reread every word on everone's signature information, and I still don't know why I am here, a chronic smoker who eats McDonald's a lot. A lack of knowledge is never good, but also it seems to have zero effect on survival. I knew less than my friends who died, for example.
Please don't think I advocate ignorance. I just keep in front of me a deep respect for our collective lack of certain knowledge about exactly how and exactly when cancer cells travel to the brain, bones, lungs, and liver. This unknowing "must give us pause." Certainty itself can be a trap or it may be a way of putting a sense of control on the uncontrollable; a healthy and common response to terror. With only a fifty percent chance the Medical Trial you want will select you for the real medicine, and the fact the other fifty percent of women may die for the cause of future survival for women as yet undiagnosed, you need to consider choosing to undergo the old-fashioned slash/poison/burn treatment that has improved, I understand, in the five yrs since I had it, and I am alive/NED.
I was a total whiny, complaining, pain in the butt to nurses and radiation techs, but I have to say I was a willing and happy pincushion for my medical oncologist and my radiation oncologist (although I stretched out the rads, with my fears winning over my duty to myself to comply on consecutive days to the point my radiation oncologist had to remind me that the studies for my future survival were only done on patients who did the rads on consecutive days, unlike the postponing that I did between sessions.)
My sister in law was diagnosed with eye cancer and the onc prescribed immediate removal of the eyeball. She refused and instead went to the UK and had a new kind of more choosy procedure that looked to be the way forward, in lieu of the glass eye. She was a young woman in her early 40's and she is dead now. In the months she was turning down the slash/poison/burn method I found it harder and harder to stay positive and even to talk with her about her enthusiasm for the supplements she hoped would prolong her life, etc.
The reason I asked you to reread some of the responses on this thread as if you were reading through the lines, is that I feel some of them do convey the respect for the traditional timeline, etc. and I may be reading into them but I think some of the writers were urging sort of what I am trying to do here, but without risking being the dickhead I have exposed myself to be. I'm just saying please please please ask yourself if completely surrendering to the Medical Oncologist, despite your misgivings, might not just be the right thing to do, instead of throwing up roadblocks to her? Only saying it because my late sister-in-law might have had a way better chance of being alive right now had she done so.
There is a psychological reason behind all our decisions and for me, immediately after diagnosis, anxiety and terror were pretty well out there dancing on every thought my brain had. The steroids made me angrier, the worry about pain and nausea were way worse than the actual pain and nausea of all the treatments. It was hard to just ask the oncs "gimme the stats if I don't take this course of action and then gimme the stats if I do" and then to take a big breath and submit/surrender to stats, but I did. I'm glad I did; it worked for me.
I say this because the shrinkage of certain tumours may not necessarily be good news, if, say, the food and blood supply to them had relocated to other lymph nodes or the brain, bones, lungs and liver. Perhaps the energy provided previously to those breast tumours is now being used to install new tumours somewhere else? Just because breast tumours shrink, there is absolutely no science that says, at this point in what we all collectively know, that the cancer is not working on a plan to metastasize.
__________________
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 05-29-2016, 01:04 AM   #39
VDC
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Re: I think I'm in trouble!

Norkdo,
THANK YOU for the candid and obviously caring response! Let me say that I agree with everything you have said and the things that others have said as well. That may sound contradictory given the things I have posted, but it is not.

In fact that is why I "ran the other way" from the clinical study that is "watchful surveillance." Yes, there truly is a medical FDA approved study for women with DCIS...and the study is to "do nothing and see how many progress." The craziness of it was beyond my understanding.

I am a scientist by trade, by background, by training, and by personality! It is not only what I do, it is who I am to the core of what makes me "tick." I have done research on myself, my HoFH son, and my husband (when he lets me.) Being true to myself is to throw my cancer into a clinical trial. Anything else, and I would live with a lifetime of regrets....and I'm not talking a little regret. It would be a betrayal of who and what I am. My family has supported my desire because they understand that anything less would be to deny who I am.

Do I understand the risks? Yes. My aunt died of metastatic breast cancer. My mother died from treatment for Hodgkin lymphoma. My dear friend passed away from ovarian cancer. I have seen it first hand. I have seen how it devastates not only the individual who has it, but also their families and friends. And I live with the hole left by these people who were an intricate part of my life. I do understand.

I'm not scared, or running. I've met this one head on. In February, my oncologist sent me to a psychologist because she thought I was just too calm about my cancer! It made me chuckle but I went! After an hour, the psychologist told me that I was one of the most well adjusted individuals she has met and that I have superior coping techniques. I never saw THAT coming. But my oncologist hasn't mentioned it again...and that was when she stopped trying to twist my arm on this. I do know what I am doing. It isn't denial. It isn't fear. It isn't naivete.

And you are right. Cancer is an unpredictable foe. There is no way to predict the future, or what path this cancer may take. That is just the point. There is no way to know. We do the best we can with the information given us by tests, by imaging, by biopsies, by the technology that currently exists and even then, it is unpredictable. We can look at statistics, and confidence intervals and standard deviations. But even then there are outliers...those data points that just don't fit the data.

I agree with everything you have shared, and I SO appreciate your heart! I could hear your caring through the written words. And you have spoken well

I as a scientist need to be true to myself as well. And because this cancer journey IS so uncertain, the path is not always the same. Don't worry I chose not to join the "wait and watch" clinical trial for a reason! I don't intend to wait forever.

Truly thank you for your heart caring message.
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Old 05-29-2016, 01:08 AM   #40
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Re: I think I'm in trouble!

p.s. you might check out the other post about Trans Resveratrol. That is more of my story! The research side of me coming out as it always does!
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