TRIPLE POSITIVE GROUP
Comments
-
LaughlingGull - I sent you a PM
0 -
Vicky, I am not upset by your post at all! ❤ I love that you are all advocating for me and helping me process what is happening. I am trying to come to terms with the fact that the man who I trusted implicitly to deliver my babies, and who nursed me through multiple miscarriages might not be the right person for my new circumstances. It's a hard relationship to think about untangling.
My MO, for what it is worth, agrees with him on my ovaries coming out, but she took a slightly different angle. However, she is also thinking my period isnt coming back, that it was a breakthrough bleed. She is not worried about the mammo, and is recommending we wait 6 months, though she said it was my choice on the biopsy. She is talking to me now about maybe taking a break from tamoxifen after 5 years. She said to me that sometimes the complications from the treatment outweigh the benefits, and she thinks we may be reaching that point. She also told me she thinks my cancer was pregnancy induced...PABC - pregnancy associated breast cancer...Lots and lots to think about....
I love all of you and thank you for listening and being there for me. Means so much!
0 -
Tresjoli2 ... Thank you. I love you too and pray that you can find peace as well as a solution. The comfort and peace all the 3P women bring me keeps me going!
When I divorced my first husband, I said to my Momma how hard it was leaving a relationship that was so long. She replied, "you'd miss a dog after that many years."
Yep... sometimes it is just time to honor what was (how he was with your babies) and move on.
Vicky
0 -
I realize that BC has given me more rather than less control over my life - or maybe you ladies have given me permission to take control. I wouldn't hesitate to leave a medical practice that wasn't listening to me. I have lost more friends to ovarian cancer than I have to BC as it is harder to diagnose. I have eliminated toxic and non-supportative friends. I have told DH that I won't visit my sister-in-law more than once a year because she is so difficult to be with. I have said no to more tasks than I would have earlier and my life is less stressful. Thank you ladies!
0 -
coach - I had one of those starter husbands too... the value added from that relationship was how much I learned about myself and what I needed and wanted going forward, even if that meant I remained single. I am so sorry about your brother, so heartbreaking.
tres - my attitude about problematic lady parts is if it seems like they are giving you trouble, they probably are, or they will. This was the case for me with excessive bleeding when I was 44, coupled with a long history of ovarian cysts, including a lemon sized one that ruptured - more pain than labor. Sorry for the following TMI but in my case excessive meant bleeding so heavyI couldn’t get the tampon or pad in place fast enough to avoid what looked like a crime scene - daily - for months. Tried birth control pills, didn’t work. TVUS showed lots of fibroids. Hyst/oooh at 45 revealed fibroids too numerous to count, AND an undiagnosed 3cm pre-malignant ovarian mass that was a total surprise. I had a similar situation with breasts, many cysts over 30 years, poor imaging, dense tissue. That’s why I did a BMX - surprise, lots more DCIS than thought, ADH and ALH in the “prophy” breast. My two cents is affected by my personal experience, but I figured I would offer it anyway. You’re in a tough spot.
taco - yay for the power of NO! I love that you’re in control and happier for it!
0 -
Dear TP ladies,
https://www.hindawi.com/journals/ijbc/2018/7835095...
I'm not sure if this article has already been discussed here. It scares me because I had not been aware of these cross-paths happening between HR+ and HER2+ treatments. As to my personal observations regarding recurrences of TPs, I sort of had become convinced this happens rather seldom compared to e.g. HR-/HER2+ or HR+/HER2-.
My daughter is awaiting her baby and is recommended to continue Tamoxifen after she will have given birth in October. She had HR+ very high, i.e. rather the luminal A type with typically residual tumor, so antihormonal therapy is probably on top.
Now I'm afraid the following antihormonal tx might be useless and recurrence ahead.
According to the article above one would need additional CDK4/6 inhibitor. But I can't imagine there is already a standard of this kind in the adjuvant setting without HER2 antibodies.
I'm so down and of course do not discuss things with my dd who is so very happy at the moment.
Do you have any thoughts?
Love to everybody, G
0 -
Thank you, Special.
Taco ... what took us so long to say "no"?
Gydrun, I don't know. I believe that at some point I had to say "enough" to worry and get to peace. One of our Coaches tells Clients that worry is like paying rent on a house / apartment you don't live in.
Vicky
0 -
Gudrun - I know I have brought up the crosstalk convo here, as it played into discussion about whether the choice betweenTamoxifen or aromatase inhibitors (or ovarian suppression plus aromatase inhibitors for pre-meno patients) is better for those of us who are Her2+. The linked article goes into a lot of detail about molecular subtype and this is an important piece of info for TP people to know, but many of us do not. I was fortunate to have a BS who was participating in a study with Agendia, the company who does Mammaprint, so one of my biopsy samples was sent to them as part of his study. Most of us TPers don't have the benefit of molecular subtyping since the assumption is that we will have chemo, OncotypeDx is not available to us, and insurance will likely not cover this type of testing with Mammaprint or Pam50. We can guess whether we are Luminal or Her2 (ERBB) type, but it is only a partly informed guess. The discussion about adding the inhibitors (Ibrance, Verzenio or Kisquali) for those who develop resistance was interesting, and will prob be the wave of the future at some point - don't know if it will become routine with early stage treatment, as Herceptin and Perjeta both did after initial testing/trialing with metastatic patients. I think it is important to look at several things in regard to your daughter - I assume the stats in the sig line are hers, correct? If so, she was node negative, with intermediate grade, is close to 4 years out without a recurrence - so, likely out of danger of a Her2+ driven recurrence since those tend to happen quickly. The ER+ piece is the long game. I am wondering if she has a reset of sorts, having gone off of anti-hormonals to have a baby. I am hopeful that as she resumes Tamoxifen she is provided protection from it. Try not to worry - it changes nothing except to rob you of happiness today.
0 -
Thank you so much for responding.
Vicky, you identified my weak point. It is my constant worries that make me freeze like at the sight of a snake. Thank you for the paying-rent image.
SpecialK, yes, the stats in the sig line are my daughter's. You are always so knowledgable, so thank you very much for your answer and your kind words.
I think there are two things to take into consideration: getting a molecular subtyping somehow, and discussing the antihormonal procedure after pregnancy. Of course not now and of course with my daughter together with her doctors ... these are my thoughts at the moment. ... But not sure anyhow. I often wish I could let things run their course.
Love
0 -
Gudrun - I believe that a knowledgeable pathologist might be able to narrow the subtyping down somewhat and it is kind of surprising in this day and age that this is not routinely provided on pathology reports. Without that info patients and oncologists are making the decisions in the dark to a certain extent if the patient does not respond well to standard treatment, particularly if it is neoadjuvent. It might be worth a consult with a pathologist to see if more info can be provided - often they are quite happy to talk to patients (or their mom!), they seldom get that opportunity.
0 -
Thank you SpecialK for your great piece of advice, i.e. to meet with a pathologist. I'm sure we'll do that and I'll come back to this helpful thread to report. Best wishes to everybody, Gudrun
0 -
I met with my MO today to discuss Nerlynx. He said pretty much what LaughingGull's new MO said - that for someone my age who is in good shape, that its worth trying, and there should be no problem getting insurance to pay for it. And that worst case scenario, I take it for a week, can't bear it, and stop. He mentioned the possibility of starting with two pills a day and increasing every week until I'm taking all six. I'll probably do that, as every time I think about taking six immodium, I swear my rectum screams "nooooooo!". Or maybe that was just the vegan chili I had for lunch.
I also asked him if there was any point in continuing to scan the lung nodules and he said yes, in case they grow but it isn't breast cancer and is something else treatable. Which I admit I had not thought of. He also said that if they aren't growing right now it doesn't really tell us that they aren't cancer because they could just be stable due to treatment, and we would have to scan them in a couple years to be reasonably certain they aren't cancer. So I will have a chest CT next week, at 6:10am which is god awful early, but I need to start getting up early anyway if I'm going to get back to trail running before work this summer.
At the end I asked him if there is anything else I can be doing to cut my risk of recurrence and he said nutrition and exercise. For nutrition, to just follow the advice of the dietician he sent me to at the beginning of treatment. At this point I had to tell him he never sent me to a dietician, but I'm not terribly worried because my diet is about as healthy as can be. And for exercise, do something that gets my heart rate up and gets me breathing hard for 150 minutes a week. Then he told me that if I came in and told him I was only going to do one of the four things, nutrition, exercise, anastrozole, or nerlynx, he would tell me to do nutrition, and exercise would be second. Because anastrozole and nerlynx only reduce my risk of breast cancer recurrence, but the other two reduce my risk of all kinds of things. Of course, I have no intention of dropping the AI since my SEs are few and very tolerable, but I thought that was interesting.
0 -
hapa - are you getting a low dose CT? If you need monitoring for lung nodules on any kind of ongoing basis it makes sense to receive the imaging with the lowest dose of radiation. My husband has lung nodules too numerous to count, that are not cancerous, but did need to bemonitored with periodic CT over a number of years. His pulmonologist strongly recommended low dose CT to minimize risk.
0 -
hapa et al. I wanted to re-post this meta-analysis that someone on BCO shared. I found it a short and sweet synopsis of current thinking about what helps, what hurts, and what doesn't matter in terms of recurrence. (And apologies if I got it from earlier on this thread--I really don't remember who/where it was posted! Might have been SpecialK?)
http://www.cmaj.ca/content/189/7/E268
(You can skip down to the "Summary of Key Findings.")
0 -
Hi hapa and rest of triple positive sisters,
Just a quick note since I am at work. I wanted to send an update on my Nerlynx experience, but I wanted to reach at least the two-week mark before updating. Yesterday I started my third week on Nerlynx so it´s time for an update.
I am happy to report that I am doing well!
The big D hit me on day 5, and I had a pretty miserable week from day 5 to day 12. That being said, I worked full time all week, and I worked out (including jogging outdoors, although in a route that has bathrooms he he) three times. I had bad D, fatigue (I would say it was from the D, nothing compared to chemo induced fatigue), and a hint of nausea here and there (just a hint, not bad enough that I needed medication or even saltine crackers); I lived on bagels, white rice, bananas and electrolyte clear liquid from the pharmacy on those days. And lots of water, soups, cream of vegetable purees.
This week, if 100% is the way I was feeling before I started Nerlynx, I feel like I am at 75%, and improving every day. I am down to 2 Imodiums per day. I take the Nerlynx with my biggest meal of the day, which is a late lunch around 2pm, and in the hours after taking them, I have a couple urgent BMs, with loose stools, which in my book is not diarrhea. sorry if this is TMI.
That being said, during the bad week, I doubted a few times whether this would be worth it. Not just because of the misery at that time, but because you keep envisioning a couple of months (if not an entire year) of it. That thought was overwhelming. Now I totally understand people throwing the towel after a few weeks on Nerlynx. Then, to my surprise, I started feeling better every day.
For some reason, eating a good chunk of saltines or other crackers before going to bed helps me sleep at night.
And I lost a couple of pounds, which is not bad. I look great in skinny jeans today.
I will keep updating,
LaughingGull
0 -
I also read the results of the trial where they went through the side effects of Nerlynx, and the duration of the worst bout of diarrhea lasted 5 days on average. That coincides with my experience so far -but it has not even been three weeks, so we will see how it goes.
Thanks Ingerp for that link, I am going to take a look at it now. I had a super healthy lifestyle already before cancer (athletic and lean and living on salads and fruit) so I dont find the exercise and nutrition advice all that reassuring.
0 -
SpecialK - I have no idea what kind of CT I'm getting. This will be my third and I'll probably have one more at most, in maybe two years if my MO remembers (I don't think I'll bring it up again if this one shows regression or no progression). I suppose I could ask, and insist on a low dose CT, or go somewhere that offers them if Mayo doesn't, but I'm frankly running out of shits to give at this point. I swear I'm not depressed. I'm just tired of thinking about it and researching medical procedures and studying side effects and want to get back to my life. I don't know how you got through all those surgeries without giving up on reconstruction, I don't think I could have done it. The path I've had so far is seriously stretching the limits of my attention span.
Ingerp - I read that link when you posted it on another thread and it's fantastic. Thank you! Keep posting it, I'm sure others find it interesting as well.
LaughingGull - Thanks for the update! I think I am going to start with 3 pills and increase it over two weeks. It's good to know that you are leveling out. And it has been really comforting for me to know that your MO is telling you pretty much the same things about this medication. I hope you're back at 100% soon!
I'm a lot more relaxed these days about, well, pretty much everything. It seems like most of my anxiety has dissipated. I still have some fatigue, but it's not terrible and I'm trying to get back to my normal workouts with the hope of getting back out on South Mountain for my 3x/week, 7-mile morning trail runs again this summer. I may be the only person on earth who thinks summers in Phoenix are glorious.
0 -
hapa - it was a long surgical haul, and sometimes I did wonder what the heck I was doing, lol! I also was doing a Her2+ recurrence prevention trial at the same time and flew up to Washington, DC each month for that. Mayo def has low dose CT, every big center pretty much does - I would imagine you just need to request it.
0 -
laughing I appreciate you sharing your Nerlynx journey with us and I am so glad you re starting to feel better while taking it. Fingers crossed for you!
Hapa,my MO said something similar at my last appointment. She said that she would not change what we did, but that she feels responsible for the weight gain I have had (40lbs during treatment). She said dropping the weight would help me more than staying on tamoxifen for ten years. She said nutrition has so much to do with our health. Just wanted to second what your MO said. I certainly do not eat as healthy as I should and am trying to work on that!
Hugs to all!
Tres
0 -
Hi everyone, I’m recently diagnosed w/ BC and I’m scouting out all these forums. I really love reading about everyone’s experiences, SE’s, helpful hints, etc. Keep sharing, it’s very helpful. It’s also great to know that I’m not alone in this. I have a wonderful, supportive husband, but nobody really can understand all this unless you’re living it (or have lived it).
0 -
Hi, I'm triple positive and have been doing chemo since October. Taxol/Herceptin and now Kadcyla. Cannot believe how it non-stop makes nose run. Taxol not as bloody a nose as Kadcyla but even more continually runny on Kadcyla.
I have to lube my nostrils several times per day with Vaseline Cocoa Butter from Amazon. If I don't lube, nose cracks and bleeds and hurts.
Had double mastectomy 3 months ago. Have to start Letrozole May 1st. Dreading adding yet another drug with serious side effects.
I've lost 110 pounds so far and have 75 more to go before I stop the Kadcyla. Studies show fat makes estrogen and a person's survival rate goes way up if she loses fat. So I'm diligent about losing about 2 pounds per week and doing intermittent fasting of at least 15 hours per day. Studies show intermittent fasting results in far less recurrence and since Her2 is aggressive I feel that the fasting is easy and beneficial. Fortunately I now have zero appetite which helps.
0 -
Cascadians You go girl! Great news on the weight loss.
Have a girlfriend that had her Plastic Surgeon "add on" a tummy tuck when she got her implants. She was already under and only paid a little out of pocket. Wish I have known before my exchange!
Also try Ayr Saline Nasal Gel for your nose.
Best wishes,
Vicky
0 -
Cascadians:
The Herceptin makes my nose run at the most inopportune times.
0 -
No kidding, you don't even get a warning, I'll just be talking to someone and drip....
0 -
And it takes MONTHS after you finish Herceptin to go back to normal. I had the last infusion at the beginning of Feb and still dripping
So annoying! By now I have had a constant running nose for a year and a half.
Yesterday, I finished three weeks in Nerlynx. Lately, I had been taking just one Immodium per day, and yesterday I stopped taking it. I am also moving to my normal diet, with vegetables and fruit in it, rather than living on white rice, oatmeal, white bread and bananas, which is what I have been doing. I am still not normal (like 75% normal I would say), but not bad. I also resumed swimming -in an abundance of caution, I had been avoiding it to prevent "accidents". If by the one month mark I can tolerate veggies and fruit, on top of otherwise living my normal life, I will be happy. Will keep updating.
LaughingGull
0 -
Thanks Laughing Gull. I have been thinking of you. Glad to hear that you are stabilizing. I am scheduled to start in early May, when we get home from vacation. Honestly, I am torn. Putting up with another year of side effects in return for 3% diminishment of recurrence? But three doctors said that I (and you) are the demographic targeted. Stay strong!
0 -
Hi Everyone,
Welcome Adhoney & Cascadians - also the Ayr Nose GEL is fantastic. So soothing.
I too wish I had be advised about having a tummy tuck when I had my BMX. It would have been so worth it! I'm not to happy with my entire Cancer Team. Hindsite, I would have shopped around and got 2nd/3rd opinions - been comfortable with my BS and MO.
0 -
Tummy tuck sounds like a nightmare, and I wouldn't do it. From what I hear, it's as hard or harder than a C-section, which is a much, much harder recovery than MX, in my experience. Poor misery and a long time not working out and being basically crippled.
I looked into getting an eye job done with the reconstruction, but it would cost a fortune an, not much saving by doing it at the same time, because the anesthesia guy time, operating room time etc are computed separately.
0 -
Adhoney, Cascadians - welcome!
LaughingGull, Homemadesalsa - I'm putting off starting Nerlynx until May 19. I'm sitting for the GRE on the 18th and can't exactly be getting up to rush to the bathroom in the middle. The pharmacist at my cancer center actually manages people on Nerlynx and their side effects. He is starting me on 4 pills/day. Once that's tolerable, I move up to five, and then six. He said most people start getting issues at 5 pills.
0 -
Sounds like a good plan, hapa. Good luck with the GRE, makes sense to start later.
0
