TRIPLE POSITIVE GROUP
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No words of wisdom or brilliant insights from me, Tresjoli. Just wanted to let you know that you are in my thoughts and that I am sending positive vibes and cyber hugs your way. Hang in there, T!
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Tres sending prayers that it's just your monthly starting
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Tresjoli2, just wanted to let you know you have people thinking of you and wishing for the best.
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Tres, we are all thinking of you and hoping for the best. This morning I had Herceptin #15. This summer will certainly be different from last summer. Trisha, what makes the DX of the ER+ “higher” as time goes on? What if I am already 100%ER+? Thanks CoachVicky for your wisdom
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Jstarling:
2018 was like the lost summer. I remember we had a great fruit harvest and I couldn't eat any of it due to the side effects from the chemotherapy.
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feeling the love from my BCO sisters. My report came back on my patient portal. My left ovary cannot be seen for some reason. And my uterine lining is now thickened.. 15mm. Not sure yet what all of that means, but will keep everyone posted...
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Hi all, Not sure if any of you are or will be getting radiation but SantaBarbarian from my chemo thread has found a fabulous product for rads skin relief. A lady she met in the waiting room at rads told Santa her MO had recommended it. It's called CamWell Herb to Soothe, and it was formulated by a RO. Natural ingredients. Santabarbarian tried it and said it does work well. She had used natural products which helped a lot but her redness/itchiness was gradually increasing. She said this stuff is better... Her redness went down by HALF from using it last night for the first time. It's expensive: 25 bucks gets you a small tube, the size of a larger Neosporin, but it is *super* effective. Just ordered three more.
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Tresjoli, I had some thickening of the uterine lining, causing bleeding, the year pre-cancer. It was just normal, peri-menopausal, messed-up hormones stuff. I believe Tamoxifen can cause the same thing. Good thing to have it checked, most likely it will be nothing. Annoying for sure. This is making me realize how much I dont miss having my period!
Best,
LaughingGull
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tres - did you have a baseline TVUS done when you started Tamoxifen? I think this is a good idea for everyone starting, so your doc has something to go by to determine whether you are experiencing any thickening. Maybe even advisable in the pre-treatment workup if you are diagnosed with ER+ breast cancer for a true measurement unaffected by chemopause, or Tamoxifen use. I know nobody wants one more test in that phase but it would provide useful info. I had a DEXA done on the same day as my mammo and US that eventually led to diagnosis and it came in very handy in determining that my existing osteopenia has worsened significantly from chemo and 6 months of Femara. Also important to note is that uterine lining thickness varies during your cycle, and for each person, so a particular measurement that may represent thickening in one person, may not in another, and depending on when the measurement is taken. That said, I don't think 15mm is super thickened as a "normal" measurement can be up to 16mm in a menstruating woman - of course, it all depends on where you started from. Definitely let us know your status as you find out more.
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SpecialK, is baseline TVUS a standard? my wife is going to start Tamoxifen in a week but the MO never mentioned that to us...
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lilych - I doubt that it is, but I would ask for one anyway. If your wife's MO won't order it, ask the OB/GYN. Thickening that is way beyond a normal measurement would be obvious, but more subtle thickening - within the "normal" measurement, but possibly still more than "normal" for an individual patient - would be hard to discern without knowing where one started from, right? I have found that you need to ask for some things that are not necessarily included in the standard of care, despite seeming to be common sense, as inclusion of some testing/monitoring seems to be a slow evolution. I am fortunate to have a forward-thinking MO, who have never hesitated to order something that sounds like it might be necessary.
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Thank you for the tip MACTAZ. I won’t be starting rads for several months, but it’s good to get some tools in my arsenal
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Thanks special. I have had several TVUS with my pregnancies and miscarriages. They compared this one to my last miscarriage for comparison, where my lining was 5mm in 2010.
I will let everyone know what the doc thinks after my appointment tomorrow. Just trying stay busy at work and take it one step at time.
-Tres
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Tres - thinking of you.
Tess111 - I didn't mean to cause alarm! I should have specified that it is MY risk that goes up for the ER+ dx. I took an AI for 6.5 years, but stopped because of debilitating side effects. That means for me, my risk will increase as I won't have the protection of an AI. I accept that risk, I decided that quality of life was becoming more important to me than quantity.
Sorry if I caused you any unhappiness, I sometimes have these "senior" moments
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Hi triplepositive ladies,
Reaching out for support. And I have some questions for Homemadesalsa or others that were recommended Nerlynx by their oncologists, after having received Herceptin + Perjeta.
The first question is, where are you treated? I also had significant cancer left (both in breast and lymph nodes, with extranodal extension, vascular invasion....) after neoadjuvant chemo, and I just completed a year of H+P. I am open to further treatment (e.g. Nerlynx) but my oncologist would not prescribe it (and is very reluctant to look into something else like clinical trials on cancer vaccines or just anything out of the standard, really). About Nerlynx, he says a few things:
1. There is no evidence to recommend it to me (because the trial based on which it was approved compared Nerlynx to Herceptin only, not to Herceptin + Perjeta); (but I keep seeing people like Homemadesalsa who had H+P and their oncologists are recommending them to try Nerlynx)
2. Insurance wont pay for it because of 1. (but he admitted he didn't talk to insurance and doesn't want to).
3. The drug is toxic, gives too much diarrhea. (but he is not up to date on the progress made on that front with prophylactic treatment).
I feel my risk of recurrence is high, and I would like to do all I can (within reason) to lower it, but my oncologist is not helping. He turned very defensive months ago when I started to ask for things out of the standard protocol. I am asking about major things, like practice-changing drugs (like Kadcyla) or drugs approved by the FDA for adjuvant treatment of triple positive cancer (like Nerlynx). The way he reacts, you would say that I am asking about things like going to a chaman in Mexico to drink green sludge from the serpents lake.
Things I heard from my onc today. Literally.
- "Spare me the torture of having to repeat over and over the same"
- "It is against my conscience to prescribe something out of protocol that can do harm". (But when asked about discussing the harm in detail he is not up to date and can't elaborate or compare that with the harm of being stage IV in a few years)
- "Go somewhere else and ask for another opinion so that you are comfortable"
This is very upsetting and I don't know where to start trying to find another oncologist, but I feel I cannot ask questions to my current doctor. I leave his office discouraged and with less hope that I had going in, every single time. This is not about me stubbornly wanting this or that drug but about keeping an open conversation on what else to do and looking for guidance about it.
Frustrated and bummed
LaughingGull
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Oh Laughing Gull. Your oncologist sounds like a piece of work. He also sounds like he's very defensive about your questions and concerns. I would seriously look for a different MO. Maybe, your primary care physician can make a recommendation?
I go to a local cancer clinic, largely for the sake of convenience. When Nerlynx came out, my oncologist did not recommend it, in part because I was pretty far out from my last Herceptin treatment. But, she also said that the data only showed a barely statistically significant improvement of outcome for those who took Nerlynx. I was good with that.
You are taking an AI; that IS doing something preventive. Otherwise, do you feel like your MO is doing a good job of monitoring you? I see my MO every three months (STILL) and I'm almost five years out. I also try to pay attention to what my body is telling me. I've tried to get on with my life (I know, easier said than done). ((Hugs))
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LaughingGull,
Hearing the way your doctor treated you just infuriates me to no end! My BP probably went up 20 pts just reading it. His adding to your stress levels does not help. Honestly I think I would be finding myself a new doctor, but I don't know you situation totally. I just don't understand his attitude at all! I was in the clinical trial for this drug and I'm very glad I did it. In my mind I have tried every thing available to me to prevent the cancer from coming back and I didn't want to look back and wonder. I actually had very few side effects while I was on it and eventually completely stopped the anti diarrhea meds. Have you checked to see if the drug company has a program to help with the cost? Also talk to your insurance company yourself. I hope some of the other ladies on here chime in to give some good advice.
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ElaineTherese, maybe when you asked about the benefit, they didnt have the data for invasive disease free survival at the 5-year point with Nerlynx, which came out last year. For someone having received Herceptin only, the 5-year invasive disease free survival went from 77.5% with Herceptin only, to 85% adding one year of Nerlynx
Hey tadover please dont let your bp boil because of this! Btw I also have a pug
. In your case looks like you didn't get Perjeta, so Nerlynx would be indicated. That is exactly my point. I am 49 and my kids are under 12, I want to make sure I do all I can to prevent recurrence. I accept Nerlynx may not make sense, but not that my doctor is so defensive and dismissive and that he is offended that I ask normal questions. I feel like for anything out of the standard protocol, I am on my own.0 -
Hi Laughing Gull, I may not be of much help, I am quite a bit behind you. I just finished TCHP yesterday, and will be on Herceptin and Perjeta a year. I am getting ready for surgery, not sure if lumpectomy or mastectomy just yet. My doctor did mention a drug he wanted me to try after I finish Herceptin and Perjeta that started with a N, but he couldn't remember the name, and then he mentioned he was still on the fence about it because of the literature not showing anything proven, or something like that. I was doing some snooping today and am pretty sure it is Nerlynx. Looks like Tadover is on this drug and gave you some good advice. ElaineTherese did too, looks like you were able to have a lumpectomy ElaineTherese, good for you, I am rather hoping for that, less complications, less time in the hospital. Will know more after my ultrasound next week. Love you triplepositivegroup ladies, so brave and so helpful, thank you.
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so it turns out I had to have an endometrial biopsy today. I get my results in 7 to 10 days. If you are a praying person, I could sure use a few good thoughts coming my way....
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Hi tresjoli,
Sending the best thoughts to you -and hugs.
It's a good thing that they are looking into it. When I had my bleeding and thickening of endometrium episode, prior to breast cancer, I also had a biopsy done. The steps were: first, ultrasound; second, since ultrasound showed thickening, a biopsy; third, after the biopsy showed tissue compatible with polyps, a hysteroscopy to look for polyps, (which found all clear).
At the time of the histeroscopy, I was so worried that I nearly passed out during the procedure, and this was before having had cancer. I would be even more worried now, so I totally understand your concern. At the same time, thickening of endometrium is not rare under tamoxifen, so here is hoping that this is completely benign.
Did they give you something to stop the bleeding? Please keep distracted and busy. Hang in there, sister.
LaughingGull
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tres - what laughing gull said. In your pocket waiting with you
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Tres - Sending good thoughts!
LaughingGull - I asked my MO (a female doctor associated with a respected big city hospital) about Nerlynx when I was about midway through HP and again towards the end. (My final dose was Nov 2018.). She said I'd receive minimal benefit and side effects were pretty nasty. I like and trust her and that was good enough for me.
It sounds like you neither like nor trust your MO, so definitely get a second opinion! If nothing else, it may serve to ease your mind a bit.
I'm 55 and our stats look similar. I've had a double mastectomy, TCHP plus HP afterwards, and now Arimidex. I feel like that is a lot! I am cancer free and expect to remain so for the rest of my days.
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Tresjoli, will be thinking of you and sending you lots of hugs.
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Magari,
Did you have remaining cancer found during surgery, after neo-adjuvant treatment? I had macro-metastases in two lymph nodes and my breast. My understanding is that my risk that my cancer comes back with a vengeance within the next three years is approximately one third, i.e. 33%. That sounds very scary to me. I am 49 and my kids are under 12. I think it is not unreasonable for me to question what else i can do to lower my recurrence risk.
LaughingGull
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LaughingGull - I in no way intended to suggest that your questioning how to minimize your risk was unreasonable, and if I made you feel that way I apologize.
Although our treatment paths are similar it sounds as if our risk of recurrence is different and of course you must persue every avenue that's available to you. Which is why I agreed that a second opinion is a great idea.
Best wishes for answers that help you move forward with hope and confidence.
For what it's worth I had surgery first, expecting it to be a "one and done" situation. Because of family history, even though I tested negative for all known markers, I opted for bilateral mastectomy with immediate reconstruction. Pre-surgery my diagnosis was IDC on the right. Post-surgery it was found that I also had cancer on the left, with micro invasion in one lymph node. So automatic chemo; not what I was expecting.
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Hey no worries. Nothing to apologize for. And thanks.
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sending some springtime to all of you... this is at my small koi pond
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THCP friends, can you help? I have had some ugly diarrhea and am wondering if anyone has any tips on what I can eat or take (aside from Imodium) to soothe my poor digestive tract. I have been eating mostly bland foods, but would like to branch out while I still have an appetite. I’m on day 10 of my first round. Does anyone have experience of this going away on its own after a few more days? I’m afraid it’s just the new normal.
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it should stop in a day or two. Mine only lasted a few days each week and became predictable. But if it doesn't BRAT diet should work to stop you up some. My MIL loved banana and mayo sandwiches especially when she had the runs.
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