TRIPLE POSITIVE GROUP

Jkeet - I finished my rads 2 weeks ago. I had 2 serious burns: one near my clavicle and one where my breast and underarm meet. I'm a full figured woman with big breasts. The burns happened where the skin folded as I laid back on the table.

My burns really blossomed after the 4th week of treatment. I finally got some prescription silvadene cream, and that helped me heal. I was pretty well healed up by last week

Treatment itself is generally easy, if tedious. I just wanted the 30 treatments to be over!

Jkeet - I had fatigue and the center of my chest was pretty meaty looking by the end. It didn't hurt but it itched like crazy and went away a couple weeks after the end of treatment. I'm almost a year out now. The pec was tight for a long time and I had to do PT exercises every day but it is a lot better now, I started a light weight lifting program and that did wonders for the tightness, which is counter-intuitive to me. I've had some capuslar contracture in my implant, which I wanted replaced anyway, and since replacement it is much better but the rads side still sits a little higher than the other. The skin on that side is still thicker, darker, tougher and apparently thinner compared to the other side. All that being said, if there was one treatment I wish I could have skipped, it is rads. Chemo was it's own beast, but I have no lingering side effects from that.

my doc prescribed me letrizole. I am so worried about side effects I read about that I bought the original (fenara) and not the generic. The price of the original is more than four times higher than the price of thegeneric. Anyone had generic letrozole and is there difference in anything between the two?

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

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.

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!

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).

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.

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.

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.

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.

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.

Bird-of-Light, great picture!!!

rlmessy, welcome to the club nobody wants to be in. We're here if you have questions or need to rant

rlmessy

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.

Vicky