TRIPLE POSITIVE GROUP
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"I'm curious as to your interest in Nerlynx; if you want the extra few % points recurrence risk reduction at the cost of diarrhea, you could be doing that now by adding perjeta to your neoadjuvant regimine."
I'm on Herceptin and Perjeta right now. My interest in Nerlynx is because I want to shave as many % points as possible. I read an article about a study that showed crosstalk between HR+ and HER2+ on Nerlynx. They said that while Nerlynx only improved DFS in HER2+ by 2.5+% when they looked at only those that were also HR+ it could go up as high as 8%.
I figure everything little thing helps if I can tolerate it. With Nerlynx the biggest issue seems to be the diarrhea.
My MO did mention Kadcyla as a possible follow up to neoadjuvant treatment if I didn't have a CPR. I looked it up and, my first thought "not fair you can't take it if you have a CPR" 😁
I'm guessing a lot of this is related to that knee-jerk, making decisions over anxiety thing. I usually feel better once I have a plan and I do have a short term plan (TCHP+BMX). After that it's all depending on the results and that seems to be where I'm trying to force a plan now.
Thanks for the advice, I am a part of the February 2020 group and, that does help to talk about SE experiences.
I will also take the advice about getting some medicinal help with the anxiety. I came across and article last week about BC and PTSD but, didn't read it, I will have to go back and, find it
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All,
I believe the research indicates about 80% of all BC Women suffer PTSD at some point. I find the Rx Adderall works very well for me. I believe that I will take this Rx for life. Keeps me focused.
GREAT NEWS. I had my three year Breast MRI on Thursday and got a great report. My implant manufacturer recommends the first MRI three years after implant surgery (January 2017) and then every two years with annual mammograms except for those years with MRIs.
Frankly, I was scared as I approached this. I think that it was because the 2016 MRI found the largest cancer in what was "supposedly" my good breast (the right one). That right breast cancer was undetected by mammogram, my Primary Care MD, my Breast Surgeon, and my monthly exams.
So today I wake up with peace. The funny thing is ... these implanted breasts feel so much better and look better than the old ones AND they still require annual maintenance, LOL. I just find this funny.
Have a wonderful weekend, Ladies.
Vicky
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Morrigan, I concur with what others have said, you are very unlikely to need Nerlynx. Kadcyla is the standard of care if residual cancer is found after surgery. I could not get Kadcyla, because it was approved at the tail end of my H-P treatment. I wish I could have gotten it.
I am familiar with the Nerlynx results you mention and I am also hopeful about this drug cutting my chances of recurrence -which are high. But when you say “when you look at the HR+ it can go as high as 8%" the thing is, the study had not been designed for subgroup analysis. The subgroups were not built to be comparable. Still, the results held after 5 years and there seems to be something there, and biologically it makes sense, according to a couple MOs I consulted st big cancer centers for second opinion. But it is a bit of a gamble, and some patients really suffer on this drug, although most don't, and I am probably an outlier since I sailed through it.
In the Kadcyla study, all groups saw their recurrence rate cut by half, across the board. That is very very powerful.
I also took Ativan for the first few weeks post diagnosis and it helped me. Dropped it when I started to feel better after like a month or so. I also took low dose Effexor for like a year and a half post diagnosis and I dropped it when I finished Herceptin, following a plan recommended by an oncologic psychiatrist at the hospital. Best consultation ever. Great advice and words of wisdom. Very important to take care of your mental health always but especially through a traumatic experience like cancer.
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coach vicky you had double mastectomy right? So you cannot and will not get mammograms right? Didn't remember about the MRI every three years
CONGRATSon your results! Very happy for you
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Hearshapedbox, sorry to hear you had D with perjeta and had to drop it. Did you get all your nodes removed? How are you recovering from that surgery? I am almost 2 years post surgery and I recovered mobility almost completely, no signs of lymphedema. You and I seem to have similar diagnoses, did you have a lot of residual cancer? I did and it was a bumme
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I've been lurking here for a while, soaking up the the knowledge and suggestions for navigating life after a triple P BC diagnosis.
Morrigan - I was told that if I didn't have CPR after my BMX on 3/3, we would go to Kadcyla and I, like you, had the same thought - can I get it even with CPR?!?
coachvicky - thanks for the Adderall suggestion. They gave me a script for some anti-anxiety meds that would help with nausea when I had chemo but I never took it because I don't want to be numb, I want to be focused.
I have waves of PTSD where I feel all is lost but then I think of all I am doing to treat this and prevent recurrence and I calm down some but the PTSD is real.
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coachvicky congrats on the wonderful news!! I may have asked you this before but who prescribed your Adderall? My MO said no, suggested I try my PCP but she’s fairly new to me and I have a feeling she’d turn me down too.
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coachvicky - i know the MRI every 3 years is to check on the implants but, do you still get anmual Mammos with a BMX? I wasn't sure, about that.
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"But when you say "when you look at the HR+ it can go as high as 8%" the thing is, the study had not been designed for subgroup analysis. The subgroups were not built to be comparable. "
Very true, the article was suggesting that further study should be made of Nerlynx and ER+/HER2+ cancers
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LaughingGull- I had TERRIBLE, miserable diarrhea on perjeta; for me the SE's definitely weren't worth the negligible benefit!
I did have a discouraging amount of residual cancer considering "how responsive" my MO thought the TCHP was (4 cm mass, 2 positive nodes). I had a somewhat unique situation with my surgery, which was slated to be ALND due to the original level of nodal involvement in my axilla and upper arm, but after neoadjuvant response was downgraded to a "modified" ALND of sorts, to try and preserve nodes; instead of removing the entire fatty pad, my surgeon basically combed thru the entire area and used her experience to cherry-pick chunks that looked or felt suspicious (or suspicious-adjacent). In all, 5 separate chunks containing 8 nodes total were removed, but I'm not sure how many I had to begin with/how many were left (I know it can vary, and I didn't think to ask). My surgeon also has a technique of "sistering" severed lymph channels back together, which as far as I know is a fairly new technique and not widely done, but it's been found that like nerves, it is possible for them to eventually fuse and regain flow function. (fingers crossed!)
I'm ecouraged to hear that you've recovered so well at 2 yrs out! I'm only 2 months out, and while PT is steadily improving my range of motion, I'm still struggling with cording, pain, numbness, and mild lymphedema in my pit/chest/upper arm.
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Laughing and Morrigan, I get annual mammograms unless I have a MRI. I had a BMX.
AngieB, I find myself more focused and not lost since starting Adderall. I did take an anti anxiety drug a day or 2 before chemo and the day of. Took the edge off.
Ingrep, My Primary Care preferred me to a Psycharist who did a battery of tests. He diagnosed PTSD based on my test results. My PC writes the script. Curious ... Why would you have MDs on your team that would not help you with how you are feeling or atleast recommend something else?
Vicky
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Morrigan- i understand wanting to do everything you can, but Perjeta isn't listed on your treatment signature, which is why I was specifically questioned you interest in Nerlynx. While it's true that clinical trial results could be viewed to see HR+ patients having a higher result at 5% risk reduction, I agree with LaughingGull that it's tricky territory assuming direct correlation when those stats come from the drug company via "exploratory analysis" rather than actual clinical testing of subgroups (and add'l endocrine therapy is also affecting results). Additionally, the potentially higher % results were found to be associated another further divided subgroup of node positive patients, who face much higher odds of recurrence (and thus stand to benefit more from the addition).
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heart shaped - hmm, I thought I had the perjeta in the treatment information. Let me double check, I found adding the targeted information a little trickier than the Chemo parts.
ETA: fixed it, forgot to change it to public after adding
Coach Vickie - that is good to know, I wondered how they checked/monitored. Do you find the mammos hurt more post BMX? I can't remember if I saw it here or on Facebook but, I came across some people talking about Mammos post surgery saying they were very painful.
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coachvicky—I thought I remembered a psychiatrist being involved. I haven’t pursued it very aggressively. I’m just looking for help with the fatigue/brain fog from the AI. I see my gyn next month who is part of a women’s midlife center and I thought I might mention it to her.
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I am taking letrozole. Some days I handle it ok - others I am a mess. Now my blood sugar is high and it looks like I am going back on meds for it. Chemo and radiation made it spike. Has this happened to anyone else
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Just wanted to say I don't know anyone who has had BMX and has mammograms other than coachvicky and one other person who had a recurrence after reconstruction. Coachvicky’s docs have decided this is the approach they want to take for her, but it is not the norm so I didn't want anyone new to this to wonder why they are not getting them. However, it is worth asking about if it is something anyone would like to have. I am checked annually by both PS and MO, I no longer see the BS. My PS will order MRI every three years to check for implant integrity. If you have pre-pectoral reconstruction your PS may order increased annual surveillance since the implant is in front of the chest wall rather than under the pectoral muscle, but since pre-pectoral recon has increased in popularity recently I am not sure if a widely used protocol has been established.
annie - are you by any chance taking a statin? They are associated with a rise in blood sugar. A number of people experience increased cholesterol on aromatase inhibitors and their primary care docs put them on a statin. If not, your blood sugar may normalize after some time has passed. Steroids taken with chemo can also cause blood glucose to be erratic. Mine was all over the map but eventually calmed down
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Morrigan ... It does not hurt. The technician who found first cancer still does my mammograms at the same center. Actually, it is a very pleasant reunion as the staff knows I am cancer free and alive.
Special ... Thanks for the post. I remember "arguing" with my Plastic Surgeon that I did not need mammograms nor have to ever wear a bra again. When he finished laughing, he gave me his plan for he called "his implants," LOL. If I have learned one thing from this it is that there are many approaches and ways to walk this path.
Best wishes, Ingrep. I hope it works out for you.
Vicky
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Thanks Vicky and Special K for the information!
I'll bring up Mammo Screenings with by BS, MO and PS once I get to that point. I have dense breasts and always went for Mammo and Ultra Sounds. I have to admit I find comfort in continuing the annual checkup since that's how we found mine so early. If the Insurance Company will cover it I'd like to keep doing them. However that discussion/decision is a year or so away.
It's funny how my expectations of post care don't line up with actual post care when 2 of my aunts are long term survivors (23 and 30 years). I should have talked to them more but, I just always assumed massive annual tests (Mammos, MRIs, PET-CT, etc). However, other than the MRI every 3 years to check on Implants the rest isn't regular.
There really is such a learning curve. Glad to have a place like this where I can get first hand experience information
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Thanks SpecialK for the info. I was wondering why I wasn't getting mammos and will ask about it with my MO.
morrigan_25, I think that the decision of not doing follow up "massive annual tests" followed data indicating that the approach did more harm than good. Exposure to radiation from the tests, anxiety in the patients, false positives, and no effect on long term survival.
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That's actually a good point. I can see why Drs don't want unnecessary tests, especially those that introduce tiny tracks of radiation to the body.
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Since the effect of Perjeta on recurrence was mentioned here a couple of days ago, I wanted to post this since I am not sure it was discussed here this past fall
After some more years of follow up, the effect of Perjeta on preventing recurrence was a bit better than the initial results showed, for hormone positive patients. The abstract is here: "With longer follow-up, the benefit of P no longer appears to depend on HR status", and " IDFS hazard ratio for HR positive is 0.73" (whereas in the prior results it was 0.86); I found this encouraging.
https://www.abstractsonline.com/pp8/#!/7946/presentation/2040
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LaughingGull - thanks for sharing! I’m counting on the extra % that Perjeta can offer me
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AngieB92...
Did you do any chemo other than Perjeta? Our stats are really close. I was considering asking to add it since I had to discontinue Taxol.
I had a super bad reaction to the Taxol and only got one infusion. Perjeta was taken off the table after my surgery as my MO did not feel my stats and the side effects warranted adding it at that time.
I am still doing Herceptin every 3 weeks and starting Tamoxfin this week.
Just curious...
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rlmessy- I did six treatments of Taxotere, Carboplatin, Herceptin, and Perjeta. I’m currently doing Herceptin every three weeks for 11 more treatments.
I’m having surgery a week from today and if they find live cancer cells in my breast tissue, I will switch from Herceptin only to Kadcyla.
I don’t know when I will start my hormone blocker. I think my MO was willing to throw the kitchen sink at me from the get-go
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Good Luck Angie!
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Thanks, morrigan!! I’m ready to get surgery behind me and to continue on his journey.
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AngieB92...Oh, I get get it, you did neo-adjunct chemo. Gotcha, that's the difference.
I was offered TCH-P prior to surgery but opted for surgery first. After surgery based on my tumor size the C and the P were deemed not necessary. I was scheduled for weekly Taxol but reacted badly so that got taken off the table. I am down to the Herceptin and Tamoxfin as treatment options right now.
I did not do any reconstruction so I don't know about that type of surgery but I did a BMX and it was not awful. One really super helpful thing my hubby did for me was to get me a small flashlight. I kept it near me at night. It was so much easier than trying to reach a light when I couldn't sleep.
I am sure you will do well!!
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Hello, I am new to this site so Im still trying to figure it out. Im just wondering if any of you have chosen to not take the AI or tamoxofin? I tried but just couldnt do it. Thanks for any input
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Hi Dragonslayer, this site is a little confusing until you know how to find your way around, but there's a wealth of information! You can browse topics related to hormone therapy (& side effects, & choosing to not take it) by going to the "menu" button at top right, then click "all topics", and under the heading "tests treatments and side effects" you'll find the topic "hormonal therapy, before during and after" (I'll attempt to share a link directly to that page:
https://community.breastcancer.org/forum/78
You can post your own new topic question ("start a new topic") to this area, or read thru the other topics posted to find others who are either declining hormonal therapy, thinking about doing so, or discussing side effects.
It's also helpful if you go into your profile, fill out your diagnosis and treatment info and set privacy to public, so that others can see your relevant info (like stage, HER2 status etc) to better assist you. (That's the part that shows up at the bottom of our posts) Good luck!
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Dragon--this predictor tool has been posted many times. It can help you see how important various treatments/therapies are. In my case, the AI is more important than chemo or Herceptin.
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