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07-04-2016, 11:13 AM
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#61
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
Carol Ann, Thanks....actually I found it funny. I am NOT an alarmist and I just stood there stunned for a few minutes until I figure out exactly what had happened. Then I found it rather humorous!
I suspect there WILL be more biopsies in my future given the clinical trial that I am joining. I have already decided that prior to surgery I want another MRI and biopsy of the second site. This is because in the second site, there was only ONE DCIS which usually isn't even considered cancer. You have to have THREE in the pathology for it to be considered DCIS. With my history, they counted that one as DCIS, but I will want to be very sure before surgery and will demand a second biopsy of that site before surgery. ....especially since I will have had the immunotherapy and NO ONE knows what effect immunotherapy has on DCIS. In the only other trial for immotherapy and DCIS (not the same treatment I am receiving), in 40% of the ER-, PR- HER 2 3+ DCIS there remained NO DCIS at all after SIX weeks of treatment.
So, given the ONE in the second site and the history of immunotherapy in DCIS I will demand a second biopsy of that site prior to surgery. This is the same site that just "exploded" on me!
Isn't this quite the adventure? ;-)
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07-04-2016, 11:27 AM
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#62
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: I think I'm in trouble!
Undoubtedly!
CA
__________________
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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07-12-2016, 09:40 PM
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#63
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
Signed my life away yesterday! 24 pages of informed consent, but I am now officially enrolled in this immunotherapy clinical trial! Now if my insurance and MD Anderson could just get on the same page, we would be set to go! I spent 4.5 hours on the phone between the two today trying to get them on the same page. Boy does this get complicated when MD Anderson is "out of network" for my insurance but will pay if part of a clinical trial.....but the paperwork is unimaginable! (not to mention time on the phone)
I'm curious, does anyone have experience with Leukine? This is the second drug given with the vaccine.....looks like it increases white blood cell count? Anyone have experience with it and know what to expect from this half of the cocktail? ;-)
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07-13-2016, 05:53 AM
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#64
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: I think I'm in trouble!
As you can see from my signature, I used Leukine as my white blood cell booster instead of Neulasta during chemo. I chose and fought to do this as Leukine boosts all white cell components, most notably the dendrites. Neulasta boosts the neutrophils primarily which fight infection. I wanted dendrites as they are the scouts who find all abnormalities. Then they code it and prompt the killer T cell production. This assists in either self vaccination (my goal as I was not in a vaccine study) or assists immune response in a vaccine study.
The only thing with Leukine is the first shot, and only the first shot, can make you extremely weak. I was almost incapacitated. It never happened again and I had to have a shot a day for 10 days after every round of chemo. It was scary but again, only the first shot and it is rare side effect. You should be aware though. You may also get a couple of hives near the injection site after time goes on. This is supposedly a good thing. I was happy to get them as it shows an immune resonse which is what you are going for. If you have any other questions, let me know.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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07-13-2016, 08:29 AM
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#65
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
Thanks Becky! Yes, they warned me about the hives and perhaps feeling like I had the flu for 4-6 hours.
I find it particularly interesting that my white blood count is below normal......even without any treatment. This is my pretreatment levels. I wonder if my low white blood count could be a piece of why I have this cancer to begin with!
The Leukine is part of trial and given to everyone, both those in the active arm and those in the placebo arm. From my perspective even if I was in the placebo arm boosting my immune system can only be a good thing!
They are enrolling 48 patients, 32 of which will be in the active arm and 16 in the placebo arm. All will receive Leukine and the 32 will receive the vaccine as well.
I was told I am the FIRST to enroll! That would make me nervous except this vaccine has been used in women with later stage cancer and it has been highly effective for those that achieved NED. In fact, 94% remain cancer free after 10 years (I think it was 10 years but dont' hold me to that) Compared to the placebo arm where 78% remained cancer free after 5 years. (yes I think the years of study were different because they followed the active arm longer) But don't hold me to that either. I'm going off of memory here.
So, being the first to enroll doesn't worry me. It does make me wonder if it increases my odds of being in the active arm though? hmm..........only time will tell.
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07-26-2016, 12:10 AM
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#66
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
I've had some glitches with my insurance refusing to call MD Anderson 'in network' and of course MD Anderson wouldn't accept me even as a trial participant without "in network" status. This fighting sure does get old sometimes.
Anyway, it looks like most of the glitches are now solved and we can progress to scheduling these injections. Hopefully tomorrow the last paperwork will be agreed by the insurance and MD Anderson.
In the mean time I had an appointment with a naturopathic doctor who did her internship with the cancer center of America. Interesting discussion. And, while I can discredit her on her lipid knowledge, I'm still deciding if she knows something about naturopathic oncology. I'm on the fence and decided that I would adopt the things that I didn't think could hurt me, and reject those that are contrary to accepted medical practice.
SO, has anyone heard of rubbing caster oil and Vit A on the affected breast and then applying heat? Sounds a little wacky to me but I can't really see the harm in it? Thoughts?
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11-14-2016, 10:24 PM
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#67
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
I dont' think I've posted since July....mostly because I have been "processing" In July I signed the 24 page informed consent for the clinical trial in immunotherapy at the MD Anderson Cancer center, but my insurance put up a stink and I had to fly back home until they settled the payment issues. The following week the PI notified me that the trial had been put on hold due to another trial that uses the same drug. There had been a glitch in the other trial and until they sorted it out, all trials using that drug were on hold. That was in July. In September I had another MRI and this time for the first time, there was clear indication of disease progression. So, I scheduled surgery for October 5th. And, on October 5th I underwent a very very large lumpectomy. (7.2 cm of DCIS) Fortunately for me, they didn't find any indication of invasive disease. I fully expected there to be an invasive component given the size and the speed at which it had grown from June to September (2.5 cm in three months). But? So unpredictable. My closest margin was 5 mm which was fantastic. Now I am in the process of deciding if I will have radiation therapy and if so, what kind.
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11-15-2016, 06:42 AM
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#68
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Senior Member
Join Date: May 2013
Posts: 570
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Re: I think I'm in trouble!
Glad you checked in. It is a lot to process. I hope the remainder of your treatment goes smoothly and your decisions are clear and easy for you.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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11-16-2016, 09:20 PM
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#69
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Senior Member
Join Date: Jan 2016
Posts: 122
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Re: I think I'm in trouble!
I have hesitated to post this because I know that my "bumps" and decisions don't in any way compare to what many of you have and are facing.
However, I changed my mind yesterday because I realized that there may be other's "out there" who are in my boat and are silent for the same reasons I have been silent. (how dare we speak about our petty little problems in contrast to what most of you are facing?)
As some of you may know, protocol treatment for DCIS (her2 + and HER2- both) is surgery followed by radiation treatment. I was good with it until I started asking questions....and then I wasn't so "good with it." Eventually I sent the following message to my radiation oncologist asking if my assessment was correct. He agreed with my entire assessment.
I understand my expected rate of recurrence to be 30% without radiation. IF the rate of recurrence without radiation were 30% then the odds of staying disease free would be 70%.
If radiation therapy were given then the rate of recurrence should be about half or 15%. What this means is that 70% of women would remain disease free with or without radiation and 15% of women would have a recurrence with or without radiation. So, for 85% of women radiation makes no difference at all. Radiation WOULD then make a difference for the remaining 15% of women. My radiation oncologist added that if radiation is given the TIME to recurrence is often longer.
My understanding is that radiation now would mean my only option in the future was mastectomy. However, if radiation were not given now, then lumpectomy and radiation might be possible at the time of recurrence. (although I think YOU said radiation can be given now and later?) Considering that 15% of women would recur even with initial radiation, this is significant to me. Particularly given my position on retaining my breast!
I also asked about the “odds” of long term side effects such as radiation induced fibrosis. There were no odds to be given so I asked about risk factors for heightened fibrosis. Among those given to me were smoking (not a problem for me), autoimmune disorders (not a problem), heightened inflammatory response (THIS IS A PROBLEM for me), and multiple breast surgeries. I then asked if larger lumpectomies might have the same effect as multiple breast surgeries. She thought a large lumpectomy might increase the risk of fibrosis just as multiple breast surgeries do. This is a concern to me as well since my lumpectomy removed over 10 cm of tissue 7.2 cm of which contained DCIS. The radiation oncologist also added that there is a genetic disposition to fibrosis as well but we have no way of determining our risk of developing fibrosis.
There is an increased risk of invasive disease if radiation therapy is not given. (15% versus 7.5%) Certainly invasive cancer changes the entire picture and is not territory that I wish to enter! But are the negatives of radiation worth the 7.5% reduction in invasive cancer? Particularly if I am especially vigilant in follow up and surveillance? These are questions I ask myself and ultimately only I can make that decision.
After discussing all of this with my radiation oncologist I asked about my rates of dying with and without radiation treatment. Oddly enough, my rates of death are the same if I receive radiation treatment and if I don't.
I made the decision to forgo radiation treatment. For 85% of women with high grade negative HER2+ DCIS it makes no difference if they receive radiation treatment. 70% will remain cancer free and 15% will have their cancer come back (half as DCIS and half as invasive) The other 15% are the only women for whom radiation therapy will help. And, I prefer to keep my options open for therapies in the future. ....either way, my chances of dying from this disease are the same. Imagine that?
I asked my radiation oncologist WHY radiation is considered protocol considering these statistics. He said it is because the ONLY thing considered when decided on therapies is the rates of recurrence. Nothing else matters in the protocols. Quality of life doesn't matter. Period. He was in agreement with me deciding to forgo radiation treatment and he would have supported treatment as well. He truly believes either choice is correct.
I then went to another institution and received a second opinion. She was much more insistent on radiation therapy but when I asked my questions and told her what I believed to be the accurate statistics, she agreed that my information was indeed correct! She agreed with ALL the statistics. But she also said that it was her job to promote protocol.
Funny how when I started asking questions, what was once an easy decision became a much harder one. And, ultimately I chose to go against protocol.
Interesting indeed.
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11-17-2016, 06:18 AM
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#70
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Senior Member
Join Date: May 2013
Posts: 570
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Re: I think I'm in trouble!
Glad you came to a comfortable decision. It's not ease for anyone. There is no right choice. Doctors want to throw everything at it so they can say they did all then could. No, little thought is given to cost/benefit. They tell you the risks, feed you the stats but ultimately it has to be your choice, what are you willing to live with. Many live with guilt and self doubt and Heaven forbid it does return, they face scorn from family and medical staff for not having done all they could in the beginning. There's no way to know where you fall within the statistics. Don't you just wish you had a crystal ball?
Whatever you do, do not doubt your choice. You did the research, you asked the questions, you wrestled with yourself. You made a sound, logical decision. Don't let anyone cause you to second guess that. Peace be with you.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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11-17-2016, 07:57 AM
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#71
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: I think I'm in trouble!
What Tracy just said.
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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11-17-2016, 02:05 PM
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#72
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Senior Member
Join Date: Oct 2012
Posts: 646
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Re: I think I'm in trouble!
What Carol Ann just said ;-)
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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11-18-2016, 11:12 AM
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#73
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Senior Member
Join Date: May 2014
Posts: 307
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Re: I think I'm in trouble!
Wow, just read this thread....thank you Tracy for your words. None of the choices we make along this journey are easy. And no one can truly know what choice they would make unless put in the exact same position (and that can never happen as we are all individuals). I have doubted some of the choices I have made but realize doubting is not productive/healthy. The only right choice is our own choice.
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