TRIPLE POSITIVE GROUP
Comments
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One more thing....I have a MUGA every 3 months (for the Herceptin) and my last one dropped 6 points. My Onc said if it drops 4 more, he's taking me off Herceptin.
I was shocked. I kinda thought being cardiovascularly fit would help combat damage (my resting heart rate is around 50-55). But, guess not.
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Statistics can be so confusing. If you've ever taken a statistics class you know what I'm talking about. I will try to explain the HER2+ recurrance as I understand it. They key words here are "cumulative recurrance". Which means lifetime recurrance.
For example: the average women has a 1 in 8 "cumulative" chance of getting breast cancer in her lifetime. This is a 12.5% chance that every woman has. However, consider the 80 year old woman and the 38 year old woman. Are their risks for getting BC the same? No. The genetic counselor told me that when you consider my risk factors and family history, the chance of me developing BC at 38 years old was 0.05% !! (aren't I lucky As my age increases, so does my risk for getting BC.
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TonLee - I started out at 73 and am now at 55 for my ECHO. Apparently that isn't a problem.0
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Statistics can be so confusing. If you've ever taken a statistics class you know what I'm talking about. I will try to explain the HER2+ recurrance as I understand it. They key words here are "cumulative recurrance". Which means lifetime recurrance.
For example: the average women has a 1 in 8 "cumulative" chance of getting breast cancer in her lifetime. This is a 12.5% chance that every woman has. However, consider the 80 year old woman and the 38 year old woman. Are their risks for getting BC the same? No. The genetic counselor told me that when you consider my risk factors and family history, the chance of me developing BC at 38 years old was 0.05% !! As my age increases, so does my risk for getting BC. It works the same for HER2+ BC recurrance rates. The longer out you get, the higher your rate of recurrance. Does that make sense?
This is opposite of how it is for HER2neg BC. With Her2- BC, the longer out you get, your recurrance rates goes down. Anyway, I hope this makes sense. It is very confusing. Anyway you look at it, the stats just suck for HER2+ recurrance.
Hope everyone is doing well !
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It would seem to me that no matter what you're talking about (HER2+, HER2- or anything else), the cumulative risk would always go up every year because you're adding you're previous risk to your current risk. But your risk in any one year could decrease or increase from the previous year. I think what some people are saying is that the risk just for year 1 or year 2 are the highest chances of cancer coming back for HER2+ breast cancer. After that the risk just for that year (year 3, etc.) goes down, not the cumulative risk for that year though.
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How about: the annual risk for recurrence is highest the first 3 years or so and then declines.
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I have a question - have any of you who were pre-menopausal when diagnosed had your ovaries removed so that you can skip tamoxifen and go on an AI? I was talking to a volunteer today and she did that and said that using letrozole gave her a 20% advantage over tamoxifen.
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Omaz my onc felt I was so close to menopause given my age and mom/sister history that I wasn't getting my cycles back. (Last one was 2 weeks prior to chemo). She monitored my Esteriol levels for 5 months and put me on Anastrozole. I have another friend that can't take Tamoxifen because of blood clot issues. She's is getting lupron shots to suppress the ovaries so she can take one of the AIs. Once your ovaries are gone that's it. I think I would opt for the lupron shots first.0
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Omaz,
I considered the Ooph, but my Onc is really against it. He said the SE from the AIs are worse than Tamoxifen (when I mentioned joint pain). I still may do it. He's Mormon and I think that colors a lot of his opinions about reproduction.
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Tonlee,
Just curious, what is your ejection rate from your MUGA's? My Onc said anything above 50 was good to go for Herceptin.
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Sewing...
I started at 65%, am down to 59%. My Onc said he won't give Herceptin to a woman if it drops her heart more than 10 points because in his experience it is doing more damage than good. While we can recover some of the EF, not all women do and he won't risk perm. heart damage.
I don't know if I "really" dropped 6 points. I've had 3 MUGA scans. The second one was on a "new" machine, and the 3rd was on the "new" machine with "new" software. So every time I've gone in, I've never gotten the same type machine and software....I've read that can cause a 5 point fluctuation.....
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TonLee my onc is not a mormon as far as I know and according to an article online (granted it was old from 2002)
when asked "Do you use ovarian ablation in that situation at all?"
she said:"No. There is still not a trial that has shown that chemotherapy plus tamoxifen in an ER-positive premenopausal patient is inferior to chemotherapy plus ovarian ablation."
source: linky
Many docs don't believe and taking out unhealthy tissue or putting a patient through another surgery unless really needed.
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Lago,
I went to see an OB Onc. for an opinion on this. He also didn't think we should do an Ooph unless/until there are problems. He said the Literature goes back and forth on whether it should be done with ER+ women. His personal opinion is to leave well enough alone...so every year I have a transvaginal ultrasound to monitor the thickening of the uterus.
Sure I think my Onc has a "do no harm" first policy, but I also think my Oncs faith does color his opinion because he's said to me...."You may want to have more children in the future." I'm 42, that's not happening! But he said his mother was having children into her 50's...and it is a "viable" option.
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TonLee my former gyno (the one that I fired because of how I was handled by her and her office after my mammo… but that's another story) said to me at age 47 when I told her "my clock ran out and I feel I'm a bit too old to start having a family"… that "oh we can do wonderful things now if you want to have children." And she's Jewish. (I only know that because she belongs to my SIL and BIL synagogue). OB/GYNs love birthing children. It might not be just his beliefs.
Hmm having a kid when your 50. You will be 75 when the "child" is 25!
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Good Lord, I'd be so offended if a doc suggested that I may want to have kids or additional kids!
I don't even remember having the discussion with my onc. about whether I wanted additional kids. I'm sure we had it but I don't remember. I suppose it didn't matter since fertility wasn't anything I was concerned with!But while we're on the topic...we have had 5 kids. Four are living - one died after a drowning accident. All 4 of the living kids were concevied with 'medical help' due to annovulation. I've read some info that Tamoxifen is sometimes used as a fertility aid. I'm not interested in any more kids and the thought of taking anything that would aid fertility is terrifying!
DH and I have never really used birth control. The daughter that died was the only child we conceived without help. So I know it can be done.
I'm considering - very tentatively - a tubal ligation. But I hate the thought of a surgery. However, I am at 100% for insurance coverage for this year and we would have no out-of-pocket expense. Part of my wants DH to have surgery because it's simpler and I have already birthed 5 babies - it's his turn!
I'm not sure what we'll do and I've never seen this topic discussed on BCO. Maybe I'm reading faulty info about Tamoxifen and fertility...
PS I have never had a MUGA or any heart tests. I have no idea what my EF would be.
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Thanks Lago and TonLee - I was worried that the tam was not the best choice. I felt fine about it until I talked with her but I have to remind myself that all our situations are slightly different.0
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pejkug3 I only had 1 MUGA before chemo/herceptin to see if I was healthy enough for treatment. That's it. I have 2 more herceptins left. I seem to be fine.
Omaz the AIs are fairly new. Before everyone pre & post menopause got tamoxifen. It's been around for a very long time with good results. One good thing about it is it doesn't affect your bones as much as the AIs do. AIs have been a little more effective in some studies but it's a very slight advantage. I personally don't think there's a huge difference.
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Pej,
I thought it was "Standard" for people taking Herceptin to get at least a base line MUGA. It is amazing how different things can be...
You can't really go on how you feel per say. I feel great. Yet the MUGA says the Herceptin is damaging my heart. I'm not going to get excited about it though until the next MUGA in October. They will use the same machine and software ....
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TonLee - I have not had MUGA, my MO has only ordered echocardiograms which may be his preference - not sure, but I have had them every 3 months. My EF was 78 on the first and 75 on the second. I wondered about operator error with these tests. My second echo the person doing it was being trained. I only had one TE at the time and he kept getting caught up on the bones in my chest - poor kid. It was done at MacDill AFB, but read by the off-base cardiologist. When will you have your last scheduled Herceptin?
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I have already had to echo's. The first one was before any TX at all, and the second was after finishing AC. I am getting a third one next week (have had 3 weekly and 2 every three week Herceptins) before I get my MX. I think I was told I will be getting them every 3 months after. Some of that may be because I am on some kind of a cardiology study with regards to chemo. Some of the echos may not be covered by my insurance, but by the study. First and second echo EF was 65, no change on the AC. I was told that echos give a definite EF number and MUGAS do not. The doctor reading the MUGA interprets the results and assigns a number. I hope this is correct because I hate to give bad info here, but am just reporting what I am pretty sure I was told by my doc. My center used to do MUGA's for chemo patients, but completely switched to doing Echos for all chemo patients now.
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My ECHO EFs have been 73, 55-60, 60, 55 - I was told that 55 is just fine.
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The talk on having children made me chuckle. I have to tell you my story. I'm 48 now. My daughter is 13 (also have two sons, 22 and 20). My daughter has been asking for a little brother or sister for years. When I got the biopsy, the radiologist called leaving a message on my answering machine to call back Dr. so and so as soon as possible. My duaghter saw the message on the answering machine and told me about it. At that point, I had already called back and knew the results of the biopsy, but wasn't ready to tell her about the cancer yet. I was shocked that she didn't ask me any questions about who the doctor was or why I was going. A few weeks later (after I'd seen BS and MO and spoke to people about how to talk to my kids about it), I told her that I had BC. She cried and we talked about it. When we were done, she said is that what that doctor's call was about a few weeks ago. I told her yes. She said she was hoping it was because I was pregnant and she was waiting for me to tell her. LOL Recently, she mentioned once I was finished with all this TX she was still hoping for a brother or sister. I told her about Tamoxifin and that pregnancy was impossible for me. She was very sad. She has now switched to hoping for adoption, foster children or a niece/nephew from one of her brothers. (Please God not for quite a while yet!) She makes me laugh. It is so funny to hear some of what she thinks. I doubt I could have gotten pregnant at 48 no matter what. For her, hope springs eternal I guess.
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I would think people who are also getting A would be monitored more often the those of us that got T. A is also hard on the heart, and then to add Herceptin you would really think they would watch what's going on.
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Thanks for pointing that out Lago. I hadn't thought of that. I was wondering why I seemed to be getting so many more echo's. Hope they continue at 65. Don't want to have to stop Herceptin.... or have any damage to my heart.
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SpecialK,
I am going every 3 weeks for Herceptin until mid-December. I am sure echos are a good test...probably better as pointed out.
Omaz,
My Onc said 55 is fine, that as low as 50 is ok, but that he doesn't like his patients to take more than a 10 point hit because it causes more problems than the Herceptin solves.
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Went to see my clinical trial onc. He said it was just "anecdotal"but all of his her2 patients have recurred. What the heck?! I told him that I wanted a doc with better odds, no joke. I will continue the neratinib trial with him, but that's it. They need to teach a bedside manner class to these oafs. My regular onc calls my situation "dire". We all know cancer is not a good thing. None of us want to be here. But we are all intending on being around awhile. I know lots who survive dire diagnoses and her2. I need to find myself a doc that can provide some positive support. I am plenty good at coming up with all the negative stuff on my own!!
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geewhiz - I am so sorry your oncs are wienies! I would be ticked off too!
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Gee,
That's the vibe I get from mine as well. The ol' "It's just a matter of time."
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I am right in the middle of making a decision regarding hysterectomy and having my ovaries removed. It is a tough choice. I am still patiently waiting for my BRCA test results...I think this will be my deciding factor. But, my periods have not stopped on chemo so far. If they continue, I will need to do something because of anemia. I can't do hysterectomy while on chemo so my choices will be either lupron or ablation. I think I am leaning towards lupron. This should give me some idea about SE's from complete ovarian shutdown and will be similar to what it would be if I had my ovaries removed. I am nervous about being 39 and going through menopause. I don't want to be known as the crazy lady! I am concerned about increased risk for osteoporosis, heart disease, and parkinsons with ovary removal. But it will probably be another challenge that i have to deal with. I can't imagine having another big surgery, that just really bums me out.
The other incentive for me is birth control. I've been married for almost 20 years and we haven't used any BC for the last 18 years or so. We have struggled with infertility and so it hasn't been a big deal...until now. I'm ER+PR+ so i absolutely can't take any birth control...so it is all up to my husband. And I'm gonna be honest...It isn't going so well. That part of our lives has changed drastically in the last couple of months. I have BC, I've had a DMX, I'm on chemo and sick, and now this birth control issue. Things are different than they've been for 20 years and it sucks.
I do think that having ovaries out gives you a reduced risk of recurrance, but just not sure if those benefits outweigh the risks.
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On recurrence - I was reading and was reminded that they often lump all the HER2+ types together which is not really correct. There seems to be a difference in recurrence for ER-/PR-HER2+ and ER+/PR+HER2+. Those with ER- have a higher risk of recurrence compared to ER+. All the recurrences are too high, period. LINK table 4
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