TRIPLE POSITIVE GROUP
Comments
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margun - I think the majority of us have taken the generics since most insurance will not cover the name brand of aromatase inhibitors unless there is a compelling reason the generic can't be taken. I have been on several manufacturers of both generic Femara (letrozole), and generic Arimidex (anastrazolr), and had varying side effects but nothing that prevented continuing to take them. My insurance would not cover brand name Femara when I asked, at $800 per month it was not something I was willing to pay for. The difference between the generic formulation and brand is usually the fillers and additives, which can cause issues for some, but not all. All you can do is try and see, then either change manufacturers, or drugs, until you find the right fit. People don't usually experience all of the listed side effects, so try to go into taking this important part of your treatment with an open mind, expecting to do well.
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Hello, it has been awhile since I have posted in this group about my Mom. She will be an 8 year breast cancer survivor triple positive Stage 1 come January. She went for her annual oncology apt. and her tumor marker was at 57.6, up 11 points from a year ago. She has had ranges from 33-50 since 2015 (that is all I can see for results online). She had an Endoscopy 10 days before her annual visit. I have been told this can skew the results of her tumor marker test. She plans to have it tested again 2 months from now. She also recently had a CT-scan with contrast of her abdomen to prepare for the Endoscopy and all was clear. She has not experienced any symptoms except what caused her to have an initial Endoscopy back in April, which they determined was gall stones caught in her bile duct. The most recent Endoscopy was to remove the stent and clean out any remaining gallstones. Has anyone else had an experience with the TM numbers jumping after a surgery? TIA! Laura
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Margun--keep in mind you'll likely have some SEs because of losing your estrogen. They would happen regardless of the fillers used in your particular brand of Letrozole.
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laolsen - my tumors have risen above the top end of the range on several occasions. I am particularly sensitive to any type of inflammation where the CA27/29 is concerned - after time passed, or the situation causing the inflammation was remedied the marker numbers returned to the middle of the range. My oncologist checked over the course of several months, much as seems to be the plan for your mom - hoping this is your mom’s experience as well.
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SpecialK- thank you for sharing. She has been sensitive in the past, so I have no doubt the episode with her gallstones has caused the elevation. It just drives us nuts when their standard protocol is to order a battery of diagnostic tests if they see the slightest blip in numbers vs looking at her history and trends over the past
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Hello everyone, I hope you’re enjoying your weekend! I have a question- hoping someone might be able to give some insight.
What is the significance of the “percentage” of ER and PR expression?
For instance, someone with a 30% ER and 20% PR vs someone with a 95% ER and 80% PR?
Does having a strong expression or weak expression alter anything regarding treatment, prognosis, or responses? Even irrespective to HER2 status (also respective to- curious) does this mean much?
Thanks!
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By significance do you mean how is the percentage arrived at? If so, the percentage represents the number of breast cells looked at by the pathologist after biopsy or surgical excision, out of 100, that contain a receptor. The pathologist looks at those cells under the microscope and counts the ones with receptors. If 30 receptors are seen in those 100 cells your percentage is 30% - 30 out of 100, same process for ER and PR. However, cancer tumors are not homogenous, any slide of 100 cells may contain differing numbers of receptors. For those with a high percentage of ER it is assumed that estrogen is fueling the cancer, less is known about PR other than high ER, low PR tumors may be more aggressive. Her2+ is measured similarly in terms of the testing platforms indicating strength of overexpression, as Her2+ is a part of cell growth and regulation in other parts of the body naturally. Generally higher expression of ER may mean that anti-hormonals can be more effective, or that chemo can be potentially less so. This is one reason why treatment is a multi-pronged approach. These aspects of each person's situation are unique and any two patients with similar percentages, or arrangements of ER/PR/Her2 may have different outcomes - it is difficult to make comparisons or draw absolute conclusions based on percentages alone.
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Somebody correct me if I'm wrong but my guess is the probability of recurrence for someone with a higher ER+ percentage is lower (assuming she completes the recommended course of anti-hormonal).
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Since it’s so estrogen-driven, do you think an oophorectomy would be more “effective” or “worth it”in preventing recurrence? For pre menopausal
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Here is some info from BCO regarding recurrence risk for ER+ early stage patients, and also the original quoted published info. This info doesn't break out recurrence risk by percentage of estrogen receptors, but rather the pathological stage - tumor size and nodal status.
https://www.breastcancer.org/research-news/distant-recurrence-risk-steady-20-years-later
https://www.nejm.org/doi/full/10.1056/NEJMoa1701830
Here is a study that addresses percentage of ER+ and survival and essentially states higher ER+ is associated with lower rate of death from recurrence due to responsiveness to anti-hormonal therapy, as ingerp said above. Read the part after figure 4 for that info specifically.
https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr3486
1206262 - oopherectomy would eliminate the ovarian source of estrogen, and aromatase inhibitors would be available to be used to control the remaining estrogen made by the body's conversion of androgens. It would be worth discussing with your mom's oncologist his/her preference of drug type to be used with your mom's clinical features, and whether there is enough risk reduction to warrant additional surgery and the potential side effects (elevated cholesterol, bone loss, etc.) that may occur with surgical menopause.
FWIW - I developed a 96% ER+ tumor nine years after a total hysterectomy/oopherectomy.
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I did 30 rounds of radiation and just finished early Sept 2019. Surgery (mastectomy r/s was in June).
It went pretty good. I had little peeling of skin and it was after the 30th round. I thought it was quite tolerable. I will say I used tons of lotion (AVEENO) daily 3 or 4 times a day, right before radiation and afterwards. Just lots to keep skin moist.
I was feeling very fatigued though during and even weeks after. I'm on another treatment Kadclya so now the fatigue probably from that drug too now.
take care and you will get through!
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Hello,
I just got back from an appointment with my mom and two oncologists at major cancer hospitals agreed on the same treatment plan. They cited this study: https://www.cancernetwork.com/her2-positive-breast-cancer/seven-year-follow-results-can-help-her2-breast-cancer-patients-avoid-overtreatment and said they will be doing adjuvant herceptin + Paclitaxel treatment, not neo-adjuvant because of the smaller tumor size. They called it "chemo lite" initially, which freaked my mother out that it might be an undertreatment, but the two oncologists both reassured her that it was excellent care.
Even though her tumor is small and the oncologists predict that her lymph nodes are clear, the tumor is located on the nipple, so it is recommended she get a mastectomy. She prefers it, regardless. Unless the mastectomy shows positive margins or lymph nodes, this will be the plan.
I asked the oncologist about cross talk and he said that he does not believe it is a significant issue in patients he's treated and that he targets both HER2 through Herceptin and hormones through endocrine treatment, because we are not yet at the stage where it can be distinguished which receptor is driving the cancer, and he's seen excellent results since the advent of Herceptin.
Just wanted to give an update and see if anyone had a similar treatment plan and how it all went for you, ladies (or gentlemen). Feeling more comfortable after speaking to the doctors!
Thanks! Hope everyone is doing well.
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Hi 1207262. I have a similar treatment plan to your mom. I’m not sure why my MO decided on adjuvant chemotherapy rather than neoadjuvant because my initial imaging showed a larger tumour (4,8cm) but anyhow I had my surgery first and then chemo. In my case the receptor status from the initial biopsy was completely different to my initial biopsy so I am glad that I had the surgery first even though I sometimes wish I had some measure of whether chemo is actually doing anything. I’m doing TCH chemo but that is probably because I have a high risk of recurrence. Wishing your mom all the best with her treatment
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I think if you look at signatures you’ll find that Taxol + Herceptin is what most of us had. I’d done enough research here on BCO to know that’s what would be recommended for me before I ever met my MO.
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Thank you Ingerp and FTM! I think we too will wonder about how effective the treatment is, but this method is recommended by the oncologists and backed-up by some very good stats, so we will have to take it at their words and pray for the best!
For those with the Taxol+Herceptin what were your side effects like? And, did you receive the taxol with the Herceptin for the whole twelve months, or does the taxol end before the end of the Herceptin?
Thanks again!
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1207262 - We've talked before and that is pretty standard treatment for small tumors with no known lymph node involvement (which they often don't know until surgery). Yes, taxol is often called "chemo lite", not because it doesn't work, but because it is used when there is early detection. Sharing with others on my "starting chemo" group as well as other forums, taxol/herceptin does seem to have fewer SE's that other treatment protocols. It's usually done weekly for the prescribed number of weeks - mine was 12 - and then Herceptin is given every three weeks. My last Herceptin was exactly 11 months after I started.
Early on, my biggest problem was the constipation/diaherra cycle which I learned to manage by always making certain I went into taxol day pretty cleaned out. Miralax was my friend. Many have increased fatigue, especially the third day. Chemo is given with a starter "cocktail" which usually includes some benedryl, steroids, anti-nausea medication etc. Your MO will tell you exactly which he/she uses. The steroids will keep you awake the night of chemo and the fatigue catches up. If Mom is still working and has any control over her infusion day (I didn't unless I wanted to travel farther), Wednesdays or Thursdays are good (I think that's what Ingar did). Taxol will make her lose her hair.
I stopped taxol after 8 weeks because of very painful neuropathy in my feet. MO said she would have pushed me harder for the 12 if I had had lymph node involvement. I had no SE's from Herceptin alone, even with a 30 minute drip. I was glad I had a port but others will tell you about their experiences without one. I had it taken out right after my first mammo after the last infusion. If Mom is getting a port, try to allow 7-10 days between port insertion and first chemo so the insertion site is healed. My MO started AI's about 6 weeks after the last taxol, in other words, while I was still getting Herceptin.
From what I've read, the discovery of HER2 and Herceptin has been a game changer. Sounds like you and Mom have had some good discussions with her doctors.
I'm coming up on my 3 year diagnosis anniversary and my life has settled into a comfortable place. I play golf, bridge, and read lots. I just got elected chair of my local food bank board. I'm 3 years older and have the aches and pains of a women approaching 75 (I think that's the first time I've actually acknowledged that). I was very open about my diagnosis and actually liked my bald look although in AZ one really needs to cover it.
Being triple positive is a marathon rather than a sprint but life on the other side is good.
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You can read up on SEs on the "Weekly Taxol" thread. Your mom will have 12 weeks of weekly Taxol and Herceptin, and then Herceptin only every three weeks for the balance of a year.
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1207262,
My side effects were similar to Taco’s. Except, I wore ice gloves and booties that slowed the flow of blood in my hands and feet so less chemo lingered there. I have no neuropathy. It was freezing, so I also had a heating blanket on my body. I ate sugar free popsicles and ice to protect my mouth.
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Bird of light- are you getting rads or not due to negative nodes?
I have no node involvement therefore my docs did not recommend rads. However I saw a post that some people after bmx and no lump that node involvement still are getting rads so I am questioning why this difference
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Bird-of-Light, great picture!!!
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Well, just diagnosed and joining this club. ER 100%, PR 94% and HER2+.
Had my first team meeting yesterday and just processing this weekend.
Need a repeat breast MRI due to a flare rib and pain issue so that is Wednesday. If nothing changes will have port placed Nov. 1 and start TCH soon after.
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rlmessy, welcome to the club nobody wants to be in. We're here if you have questions or need to rant
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margun, since I opted for double mastectomy, I didn’t require rads. If I had chosen lumpectomy, I would have had to have rads.
Cowgirl, thanks for the compliment. That picture was taken 3 years ago. My hair is now about shoulder length. It’s hard to believe I went through that shit show. It was scary (still is). I see life differently now for sure. I count my blessings daily.
Special K, my oncologist does not test my blood for markers. I even asked to get a blood draw when he had a PA filling in, but was again told no. Their reasoning is that testing (including scans) does not make a difference in survival outcome and blood markers rarely detect a reoccurrence any earlier than a lump, pain or cough. They will only run tests if I have symptoms. What are your thoughts on this?
Bird0 -
Welcome to this group of strong women.
Keep some distance between your port surgery and your first chemo. The port needs time to heal and adjust.
And remember ... this is your life and you are in charge. You will live with the decisions long after treatment so don't let anyone talk you into anything you are not sure about or uncomfortable with.
Best wishes.
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Something I read from Lillie Shockney today, maybe this will be helpful to someone:
Lillie Shockney : The voice of experience
* Once you've been diagnosed with breast cancer, your life is forever changed. It is up to you if it changes for the better.
* When I look down, I don't see that my breasts are gone, I see that the cancer is gone.
* My husband told me that the mission of the surgeon is to perform transformation surgery. My mastectomy transformed me from a victim into a survivor, so I'm exchanging my breasts for another chance at life -- a very fair trade.
* On the anniversary of your diagnosis or surgery or however you have chosen to mark the event of having been diagnosed with breast cancer, make it a point of celebrating. Consider it a new birthday. Your life has started anew. Acknowledge it, be thankful for it, experience the joy in it.
* This is not the time to keep your emotions bottled up. Share your feelings, no matter how scary they may seem, with your spouse, other family members or your best friend. Your immune system will benefit and thank you later for it.
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Bird, your oncologist's protocol on tumor markers is the same as my oncologist's protocol. I am fine with this, but bare in mind that I do not have children, grandchildren, as well as being 73 now. Makes it much easier to be ok with this. I'm 10 years out this year.
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Hey...coachvicky,
Funny you should post that. I was dx'd on 10/9 with initial biopsy report. I immediately stuck a date in my head of 11/9 to begin whatever treatment was going to be recommended. I am working right now with 1 of 2 groups in my area and have all the diagnostic work ups scheduled. But, I want a second opinion and to meet with the 2nd group who is well known and there treatment center is 15 mins from my home and hubby's work. That appt is 10/29. I scheduled port placement on 11/1 and anticipated starting the recommended chemo the week of 11/4, hopefully toward the end of the week to give about 7 days for port healing.
Long story...but 1st group calls me today because nurse saw port date and is not happy with it. Wants me to do port 10/25, chemo class 10/28 and start the "harsh" (nurses word) chemo 10/30.
I think that timeline is crazy. I am not a fan of shoving a tube into my artery then turning around a few days later and flushing it with chemo. That sounds like asking for trouble.
How long did you wait after port?
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MissouriCatLady - thank you for sharing!
rlmessy - I had my port put in on Sept 12 and my first chemo (the exact treatment you’re on plus Perjeta) on September 17 without any problems. I’ve had two treatments so far and wouldn’t describe my experience with it as harsh. It’s very doable. The worst side effect for me is losing my taste buds for a week and a half
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cowgirl,
I am 48.I guess I just wish there were a true marker so we could catch things earlier after mastectomy.
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CoachVicky just posted on another thread and I would second - you need at least a week between port placement and starting chemo.
Don't let yourself be bullied into making decisions or doing things faster than you are comfortable with. If your physicians don't respect your decisions, find other ones.
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