TRIPLE POSITIVE GROUP

For those with trigger fingers/thumbs, I got relief from using coban wrap (like what they use after you have a blood draw - the stick to itself stretchy stuff) on the trigger joint, tight enough to allow a little bend, but basically immobilizing. It took about a month of doing this and the trigger resolved.

vijiya - chemo drugs suppress the immune system and inhibit healing - you wouldn’t have enough time between now and your start of chemo date to heal enough from surgery. Most who have an oopherectomy do it after chemo is finished and the discussion about treating the ER+ aspect happens

vijiya - for me the plan was to be chemo/herceptin, then tamoxifen. Now that has changed to herceptin/tamoxifen. I am 52 and have been in pre-menopause for the last 3 years, I get to like 10 or 11 months with no period and then have one in the fall. First time that happened we did a biopsy, second time I refused the biopsy because it was on time, in the fall and felt like a regular period. The third year same thing - difference was my estradiol jumped super high (I had been in the teens and it went to the 40's) and I got my BC diagnosis.

My MO is taking the approach that we will do tamoxifen for two years and see where I am at with the whole menopause and from there decide when to do a hysterectomy but both he and I agree all the female pieces and parts are going to come out at some time.

I am meeting with a new Gynecologist who will help us keep track of what's going on down there and if need be we will do surgery sooner.

I do think sometimes in the rush we move so fast we don't stop to think, fear plays a big part in that. I am comfortable waiting and giving the meds time to settle in my system and for my body to heal from one surgery before I move into another.

Good morning then Vijiya! Going to bed. Take care.

Re: Ovaries removal...

I was diagnosed almost a year ago at age 49 with 95% ER, 90%PR and Estradiol was 302 Ovulation ... I was like Wait, What ... I had the ablation done 2010 and partial hysterectomy 2015, kept my ovaries for health benefits, no periods since.

At first, I too wanted everything gone. chop off my breast and total hysterectomy!! Thank goodness my doctors new better. I kept my breast and no oophorectomy.

Chemo put me into menopause and I had my Estradiol checked again Jan 2020, last chemo Sept 2019, it is now at <5pg Postmenopausal (ChemoPause). I am not on AL yet, waiting til after my DEXA scan.

Meanwhile I take 20mg of melatonin at night as there have been studies showing it decreases your hormone levels. Hot Flashes are hard, going to try the SGB, stellate ganglion nerve block, to see if it helps, supposed to help with my migraines as well, fingers crossed.

Hang in there! Here are just a few links, hope they work.

https://www.hindawi.com/journals/ije/2018/3271948/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC55036...

https://www.sciencedaily.com/releases/2016/08/1608...

https://www.naturalmedicinejournal.com/journal/201...

Hapa,

May I ask if you took Arimidex and Nerlynx at the same time? My MO started me on Kadcyla instead of Herceptin and Perjeta after completing 6 rounds of TCHP and DMX in November. I just learned about Nerlynx, and I’m curious if I would be a candidate.

Hapa,

Thanks for the info!

Welcome to the board. Have you met with an MO yet? Most of these questions are probably best answered by your MO.

For #2 i asked an MO that and he basically said if there's no cancer post neoadjuvant therapy it counts as no lymph nodes involved (provided all others tests pre-chemo showed no involvement)

#3 should tell you on you biopsy. Mine was on the biopsy done for the microcalcifications.

Hopefully someone else can help you out with the rest. My doctor told me final staging is done during the surgery which is a little frustrating to me.

Ok thank you. So lymphovascular is the same thing? Not separate? So we really don’t know until the pathological surgery point then?
The surgeon told me that the PCR is no cancer remaining after the neoadjuvent, but not to worry if there was some because they would take it out with surgery.

I’m reading that if you are a PCR (60% of people are), and you follow the normal regimen of Herceptin follow up with the hormone blocking agents.... the chances of “cure” (at least for a 5year rate) are 92-95%. Is that what you guys understand too? I guess my question is.... do we know the stats of you are NOT a PCR? Assuming it depends on how much cancer was left and where. And what follow up drugs you took after.

This is so much to take in.

JP47 I know it's frustrating, but yes, besides any genetic testing, you won't know more than what you know now, until surgery (besides any future scans looking for changes from chemo response or disease progression, if applicable). Scans are limited in what they can "see" and often can't detect smaller tumors (of a few mm) and cannot detect lymohovascular micromets (the vessels of blood and or lymph), and all of these things determine accurate staging and thus statistical odds of recurrence and death.

Being stage 1 wiith small tumors and no lymph involvement gives you really good odds, even without PcR. If it helps you to compare and contrast, my clinical staging was an estimated 3a, with an almost 6 cm main tumor and multiple palpable lymph nodes (the exact # unknown but 1 confirmed during biopsy, and my largest lymph node was larger than your largest main tumor). Every scan gave me a different tumor size or node #, at one point they said I had a 5 cm tumor with smaller satellite tumors around it. We'll never know exactly what was going on at that point because I had neoadjuvant TCHP, which gave me a response my MO called "very good", but not PcR. There was lots of cancer left in my opinion- my main IDC tumor still measured 4cm (but "was positive for signs of response"), with areas of DCIS and 2 positive nodes, which makes me pathological stage 2b. My MO said without Kadcycla I had 23% chance of recurrence within 3 years (aka 77% chance of disease free survival in 3 years), but a year of Kadcyla would shave those odds of recurrence in half. So (if I'm able to finish treatment, which I'll start once I'm done with radiation) I'm looking at a 88% of disease free survival, with a large tumor and positive nodes with no PcR.

My MO also said that being HER2+ means it's more likely to come back within the next several years, but LESS likely than hormone positive HER2 negative cancer to come back after that, at say, the 10 or 15 year point. Note that there is NO "cure"; nothing will make even the smallest case of DCIS 100% likely to never come back, and all we have are statistics for what is likely but not guaranteed in each case.

Morrigan- staging status is definitely confusing and frustrating, esp when you're newly diagnosed. It gets more confusing when neoadjuvant chemo is in the picture- if a person has tumors and positive nodes but achieves PcR with no cancer found at surgery, what is pathological staging then?? It gets complex, but at the end of the day the PURPOSE of staging is what's really important (and different types of staging models can help with this). Here's a good article explaining that dynamic a little better

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC44417...

My first try wouldn't hyperlink, hope this one works!

Also, this Neoadjuvant therapy outcome calculator may be of help

http://www3.mdanderson.org/app/medcalc/index.cfm?p...

Hi everyone, while reading a different thread I heard about the triple positive group. Well that’s me! Was diagnosed just about two weeks ago and I’m scheduled for my port placement Monday and TCHP infusion Tuesday. I’m so thankful I joined this community

Thank you for the info. My path report didn't say anything about "present" or "absent" so I guess I don't know. My left breast also had multiple tumors and a large area of DCIS...likely to be 5-6cm. We just dont know. But knowing this...maybe pending lymp nodes after surgery...I might ask for the Kadcyla. Lets hope both of us can get through the treatment protocol we are on (me just about to start).

JP47 if you have any residual cancer at surgery I'm sure your MO will recommend Kadcyla- it's becoming the new standard of care in such cases since 2019.

Some people do pretty well on TCHP and others have a harder time- I was in the latter category! Perjeta gave me awful nonstop diarrhea despite immodium, so after 4 rounds my MO pulled that part, but said even that amount did a lot of good. I highly recommend using glutamine powder to prevent neuropathy and ease mouth pain- it's been proven in clinical trials to do so

https://clincancerres.aacrjournals.org/content/7/5...

I started to develop neuropathy after my first chemo, but taking 10g of glutamine 3x a day in some juice (for a week, starting the day before chemo) prevented it entirely for the most part (with a few days of tingles towards the end, when I was sometimes forgetting to take all 3 doses) I didn't ice anything except my mouth (sucked on ice chips during the taxotere and carboplatin portion), but some choose to ice hands and feet.

If you haven't already done so, join the March 2020 chemo group; it can be very helpful to have the support of people going thru it at the same time! Good luck, I hope TCHP is easy on you.

I'm currently on TCHP (middle of round 2). Taste buds go wacky but, water still tastes good. Immodium doesn't do a lot for me I just living with it. I do ice hands/feet/mouth but, will add the glutamine powder didn't hear of it before. I haven't gotten mouth sores but, have had Thrush both times. They gave me a mouth rinse and now lozenges and they work.

For me the biggest issue is the Thrush and taste buds but, everything is manageable.

I agree with others join the March 2020 Chemo group, it really helps talking to people going through it same as you (even If they're on a different treatment)