TRIPLE POSITIVE GROUP
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Jaboo I have heard that somewhere before, I can’t remember where. I was diagnosed at age 38 in 2017. I will be 40 in August, no kids. I guess that ship has sailed for me.... lol. My BS once told me I can take a break from HT after 2 years but my MO is against it as one lymph node had cancer. Phew! Itis what it is.
Gudrun, fingers crossed for your daughter. I hope she gets pregnant soon enough.
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Thank you ladies for your kind wishes.
I've also read that study which slightly showed better outcome when pregnant after BC when hormone negative, and und no changes in recurrence risks when hormone positive. Our second opinion professor in Heidelberg (Germany) confirmed this to us by saying we don't yet know the reasons and can only speculate ...
I'm sorry Princess Meg, you won't get on board of that ship. It is what it is, as you put it. In fact, nobody knows where the journey will go, be it with or without children.
Love to everybody. G
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Hi Gudrun, no it's okay as I have made my peace with that. The goal is to live a long, healthy, happy and fulfilling life going forward. Maybe after 5 years on HT, I will check my fertility levels and see if there's anything left and probably try for a baby... lol. Wishful thinking
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sounds like a healthy attitude Princess_Meg, though it's not an easy one.
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I have a new onco that I like although I don't think he specializes in breast cancers. It's a tiny center and my insurance doesn't give me many choices. My question is .... Is it standard for him to do labs and breast exams every 3 months? I was diagnosed April 2014 and have had to change doctors several times due to insurance changes. I've only been getting annual mammograms and checkups
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Blownaway,
I currently see my MO every three months, but I believe that's because I'm getting Zoladex every month. And, yes, I often get labs before I visit her. I guess I don't mind because I'd rather be closely monitored than not.
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My primary does labs every 6 months that go to MO and BS. I see MO every six months and BS every six months following mammogram (once a year on non BC breast). Make certain your insurance is covering every 3 months labs and exams before you get a surprise.
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My insurance seems to be covering it so far. My copay for each visit is $30 and $0 for the labs. He's had me on exemestane and I was thinking it was all about the labs to see if my body was tolerating it but he does breast exams each time also. I was thinking it was overkill in comparison to what all my previous doctors have been doing
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I was diagnosed June of 2014, I went every 3 months for a couple of years, then 4 months and then my last appointment in October 2018, he scheduled me for every 6 months.
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I have lab work every 3 weeks when I have my Herceptin IV - they draw bloodwork before hand. I see my MO every 6 weeks, and I have an Heart Eco every month. My Last Herceptin Treatment will be in 2 weeks - (Yeah) then I will be curious how the follow up will be since I just started Anastrozole and they want me to start the new'ish Neratinib pill for a year.
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Blowaway.
My first MO never did an exam in over the year I was with him.
The MO now exams every 6 months and labs at the same time all just before my Prolia injection. He is clear that I can contact him at anytime.
He states that I have little breast tissue left but he still exams including my lymphs.
I think he is being complete. If he has a resident present, he shares that they should see my 3D tattoos ... really. I think I have the first 3Ds he has seen.
BTW, Someone close to us was recently diagnosed with cancer (not breast ... started in her uterus). She had a meltdown yesterday over her hair loss. She has thinned and is using gel caps. We (as well as her husband) did everything we could to get her to cut her shoulder length hair BEFORE it thinned. Nope. Said she did not have the face for a short cut. Now she is regretting not cutting it because the shock has been so traumatic. It was on the tip of my tongue to ask how her face shape supported her hair now but I just swallowed those words (thankfully ... as aside, chemo brain did train me to think before speaking as I searched for words). The sad part is that her diagnosis is stage 4 and she may find herself struggling with her hair for the remainder of her life.
I share this because I am grateful for the experiences shared in this forum. I have learned so very much about what to expect and how to deal with those expectations. I would have walked thru an unending maze without your sharings. Thank you.
Vicky
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Hi CoachVicki - I see your taking Anastrozole. I started on Sunday - I had such severe SE's that next day I decided to take every other day which is working for me. Any advice? I might have asked you this before - but are you familiar with Neratinib? My MO wants me to start after my last Herceptin IV which is in 2 weeks. I want to get my Anastrozole under control first - but I plan on taking my time deciding on the Neratinib. Some nasty SE's for some.
Good advice about cutting hair before chemo. I took the advice and served me well. Sorry about your friend.
ElaineTheresa - Would you mind sharing why you are taking Zoladex plus your anastrozole?
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Hi!
I'm taking Zoladex with Aromasin because I was pre-menopausal when diagnosed. The AIs are for post-menopausal women, but Zoladex puts me in chemical menopause. That allows me to take Aromasin, which is supposed to be a bit more effective than Tamoxifen (what most pre-menopausal women take).
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Please clear the every other day with your Oncologist. Mine would not approve every other day.
My SEs are minimal with Aromasin. I can sleep thru the night, no hot flashes, and my trigger fingers are much better than when I was on Arimidex.
Go to: https://dailymed.nlm.nih.gov/dailymed/index.cfm
Look up your drug and manufacturer. Look for the inactive ingredients and see if you can determine what might be causing your side effects or look for a manufacturer with fewer inactive ingredients. I hope that this helps.
As for Neratinib, I was not offered that. Maybe Special K can weigh in on this.
I am going today for my third Juliet treatment!
Vicky
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rljes - I am on zoladex + aromasin too. My MO told me this should be slightly more effective than Tamoxifen. She referenced me to SOFT/TEXT trials.
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Thanks ElaineTherese, CoachVicky & Jaboo for answering my questions. CoachVicky I'll take a look at the link - thanks!
Rj0 -
I was told I have to take Tamoxifen first before starting AIs, so I've been taking it but I don't think I will be able to stay on it if I'm not switched and so what happens happens if it hasn't already.
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i see my MO every 6 months, she does blood work, full exam and echo scheduled. I think this next appointment she plans to have an ultrasound done just to check my lymph nodes. She also suggested an ultrasound on my uterus this time. Been on Tamoxifen for over a year. Where does the time go.
A question for you ladies though. Blood work has me on full blown menopause and I have not had a period since February of 2017. Will she keep me on Tamoxifen? Or switch me to the other
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Hey Shel, I would think that would be up to you if you want to switch to something different then tamoxifen.
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shelabela,
You were diagnosed at 43; the average age of menopause is 51. No doubt your ovaries were zapped by chemo, but maybe your MO wants to see whether they'll recover (?). I'd definitely ask whether or not your MO thinks you're ready for an AI, but she may want you to consider ovulation suppression "just in case" before she prescribes one.
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hello triple positive ladies! I haven’t been on here in forever and was one of the originals who posted when Ton-Lee started this thread in 2011( diagnosed Aug 2011). I’m 7 years out
I was reading back at some of my original posts. It’s like a virtual diary/journal. There were many many dark days as reflected in those posts. The ladies here helped me immensely during that time. I always wonder where everyone is “post cancer” -I see some familiar names on the boards
So happy to see this thread is still active and providing so much support to the newly diagnosed,
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Just wanted to pop in to say my husband met a woman this weekend who is a nurse who specializes in administering drugs (or something?). They had a lengthy discussion about what a game-changer Herceptin was. I think we all knew that but it was interesting to hear about it from her point of view. They talked about 12 vs. 6 months and she said for now she'd insist on the full 12 months. Kind of good for me to get the reinforcement--I have another one coming up this Friday and they seem to be getting tougher SE-wise. After this one I'm down to five, so 15 more weeks.
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Ingerp - I have two left and they're giving me SEs now too. At the beginning the Herceptin only infusions did nothing to me. I mean nothing at all. Now I feel pretty woozy during the infusion and a little tired afterward. My WBC are lower than they were during chemo and I'm slightly anemic, is that even from the Herceptin?. I'm looking forward to finishing and getting this stupid port removed!
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You've got me thinking now, hapa. I've posted on several threads that I think one thing that really helped me through chemo was all of the meat I was eating. I've cut *way* back on that recently--maybe I just need a little more protein? I'm definitely woozy when I leave tx and end up having to nap afterwards.
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Yeah, I went back to my vegan whole foods diet after rads ended. I had been eating some non-vegan and processed things off and on starting during chemo to help my recovery. A high protein diet is nearly impossible on a vegan whole foods diet. I added fish and protein shakes back in just last week due to low blood cell counts. We'll see how that goes. I may stick with the protein shakes even after treatment. Though they are technically processed foods, the ones I buy are vegan and organic with no added sugars and I think that's fine. Plus, it's a lot easier than making breakfast every day.
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Sorry to hear some of you are having trouble with just Herceptin. I had none and am one of those who made few diet changes post diagnosis. Maybe it is the protein. My labs stayed very stable. But I was certainly glad to be done and was much more relieved that I expected to be when MO said take out the port.
For those of you who are nearing or recently finished H, speak up about your AI SE's. For many of us, it takes a couple tries to get the one that causes the least amount of problems. And it seems to be different for each of us. If you're taking a generic, be certain to pay attention to the manufacturer. That may be all that needs changing.
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The only SE I had o Herceptin was a drippy nose. It dripped all the time. It was so bad my nose was burned. Lol seriously.
I live in Iowa and we are expecting highs of -12 today and -25 tomorrow. With wind chills of -50 to -70. I think I might not leave my house
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Yes--time for most of us to bundle up! It's hitting here tomorrow/Thursday.
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Inerp , I'm glad you are getting close to being done with H. I an only on my8th dose, getting perjeta also. Knock on wood, the only SE's is the dreaded dripping nose and some taste changes but certainly not as bad as when I was on taxotere. Take care all
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Shela: get a looong novel and dont leave the house until you finish it. Question on the Herceptin drip: how long does it take from the last infusion until he runnny nose subsides? I have my last Herceptin infusion on Thursday and I am desperate to get rid of this. It has been more than a year of constant drip, first with chemo then Herceptin. So annoying.
Stay warm, everybody.
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