TRIPLE POSITIVE GROUP
Comments
-
Jenn, I'll ask again, and ask about taking the biphosphenates. Such great info on this board!
0 -
I had the CYPD6 test a couple months ago after much discussion with my MO. His opinion is that there is nothing wrong with the test - it's what to do with the results that is the problem. There is a sliding scale as opposed to a yes or no answer. My result was that I am an extensive metabolizer of Tamoxifen and fall into the normal range.
This discussion prompted me to ask for the test: Link
"[T]amoxifen is not the active form of the drug. Tamoxifen is what is known as a pro-drug, it must be metabolized by the body into its active form called endoxifen. Unmetabolized tamoxifen can indeed fuel breast cancer growth. However, the metabolized form of the drug (endoxifen) is an extremely potent blocker of the estrogen receptor (recent research from Mayo has shown that endoxifen actually degrades estrogen receptors in cancer cells, slowing their growth). My onc went on to say that endoxifen is so potent, it blocks any stimulating effect tamoxifen has on breast cancer.
The potential problem is when tamoxifen is not effectively metabolized to endoxifen. An enzyme in the liver called CYP2D6 is responsible for the metabolism of tamoxifen into endoxifen. About 7% of Caucasians and African Americans are "poor metabolizers". They inherited a genetic form of the CYP2D6 gene that does not allow tamoxifen to be converted into endoxifen. In hormone receptor positive BC (the population including both Her2- and Her2+) poor metabolizers have significantly higher rates of breast cancer recurrence than good or "extensive metabolizers". There have been a few studies published that demonstrated this effect.
He went on to tell me that Her2+ poor metabolizers do exceptionally poorly on tamoxifen, much worse than even Her2- poor metabolizers.
There is a simple blood test that will tell you your metabilizer status. It costs only a few hundred dollars and some insurance will pay for it. I think its a good idea for all patients that are considering taking tamoxifen to be tested. But in light of what my onc told me about Her2+ BC having a much poorer prognosis if you are a poor metabolizer on tamoxifen, I think it is critical for Her2+ women.
Why not just go on an AI? My onc was very much in favor of tamoxifen for EMs due to quality of life issues and he was confident that Her2+ EMs do very well on tamoxifen. With trepidation, I went along with it; I have been on tamoxifen for a little over a year. Later, I found evidence that Her2+ EMs do, in fact, do very well on tamoxifen. (I'll explain in a later post as this one is getting very long).
In addition to "extensive metabolizers" (EMs) and "poor metabolizers" (PMs), there is also a group of people that inherited one of each gene. These people are termed "intermediate metabolizers (IMs) and in the Mayo study including all hormone receptor positive BCs (Her2- and Her2+) IMs fared slightly less well than EMs, but significantly better than PMs. We did not discuss the impact of IM status on Her2+ women."
I went into the test knowing full well that this was a controversial topic, but felt that for my own comfort I needed to know that I was not a poor metabolizer. What sense would it make to take a drug that my body couldn't metabolize? Granted, there are no guarantees, but I have some peace of mind. We agreed that if the test turned out that I was a poor metabolizer that I would consider options other than Tamoxifen (Lupron shot, ooph, AI, etc.)
There is also the other end of the scale. Some people are ultrarapid metabolizers and may not be in the clear. "Patients who are poor metabolizers (individuals with no CYP2D6 activity) or ultrarapid metabolizers (individuals with genetically elevated CYP2D6 activity) can have markedly altered response to drugs that are CYP2D6 substrates." Link
"Ultrarapid metabolizers (UMs), up to 7% of Caucasians, require more than average doses of drugs metabolized by CYP2D6 to reach therapeutic plasma concentrations." Link
Hope this is helpful. I encourage you to all do your own research and talk to your doctors about the subject, since clearly I am not an expert.
0 -
Wow - I echo Cypher - such great info on this board. Thank you, Pbrain, Jennt28 and vballmom!
0 -
cypher I'm not an onc so I may not be getting this right but my understanding of chemo is it works well on fast growing cells. Many hormone positive (not HER2+) have slow growing grade 1 cancers. Chemo might not work as well on them as someone who is fast growing grade 3. I'm sure it happens but I have yet to see a HER2+ person be grade 1. Typically we are grade 3 and a few grade 2.
about the imaging… they are super super careful now that you've been diagnosed. It may make things a little scary every time you get imaging but you want it to be that way. They will check every zit not that you've been diagnosed. My onc doesn't do scans unless there's a reason… but if there is even a slight reason she ordering scans.
Pbrain you should get a complete final copy of your path report for your records. It will have all that information on it. I know I as my BS for mine. My onc gave the final path to me without asking.
I was also under the understand that the test to see if you metabolize Tamoxifen wasn't reliable.
I diagnosed with osteopenia before chemo. Did lose quite a bit after chemo + chemopause + 5 months of Anastrozole. It slowed after that. I'm still osteopenic. My onc and PCP doen't treat osteopenia. It's more of a warning sign for osteoperosis. My feeling is I plan on living a long time so osteoporosis will eventually be in my future. I'll take the drug when I absolutely need it and I am actually diagnosed with osteoporosis. There is some concern that long term use of these drugs makes your bones brittle. Also with the jaw issues I rather wait till I really need it.
SpecialK I don't think your hair is thinning because of the specific AI. I think it's because of the lower estrogen. I do recommend women's Minoxidil.
ang7894 a friend of mine just had it done 1.5 years ago at age 47. It did stop her periods. She didn't have cancer though. But I know I was perimenopausal at age 49 when I did chemo. My periods never came back.
vballmom I too was worried about being a low metabolizer on Tamox being HER2+. I had read about that issue before treatment. I'm so glad my onc felt I was close enough to menopause that she started me on the AI right away.
0 -
Hi ladies!
Well since my biopsy results on Jan.9, I have thought I was triple +
My MO pushed for the fish test on my her2 because I seemed borderline to her, the fish test says I'm negative but I am 100% er/pr! Now I'm confused
also it makes me wonder how much more of my path was wrong?!?! Any suggestions or advice? I don't know if this is good, bad or what? Atleast when I thought I was triple + I had a group like y'all to look to! What do I do now?
Angie0 -
barberchic you have the most common breast cancer there is. No need to feel you're alone. There are "threads for you" but that doesn't mean you have to leave us if you want to stay. After all everyone on this thread is hormone positive and treated with similar drugs for that part.
Don't look at this as a bad thing. HER2+ is pretty serious fast growing cancer. Yes we HER2+ have Herceptin (and maybe some new stuff) but not everyone responds. Granted most of of here seem to be doing great. If you aren't HER2+ its not a bad thing.
0 -
Thanks lago! My MO said that too! It just made me feel like I couldn't trust what my path said, this is such an overwhelming disease to deal with then, your told something different 2 1/2 months into it....ugh! I'll definitely stay here and also look for those threads too! So, second week of April I start cytoxan/ellence, I'm getting 4 rounds.....anybody do this regiment?
0 -
Barberchic, I certainly don't think of being Her2+++ is a good thing. I am very happy that there are targeted therapies available and that much research is being done...but I don't think I'd be sad if I was told I wasn't Her2 positive! By the way, there are studies out for women who are not Her2 +++ taking Herceptin. I echo what lago says - you are certainly welcome here!!! Sounds like you have a proactive MO - good stuff.
0 -
Vballmom, I'm not sad! Was just confused and felt uneasy about reliability of the tests that are done. That's all, I am actually glad to have a more certain plan to go by. Rather than all this waiting, I'm totally ready to whoop this and get on with life as usual
although I do know this will be a new life as usual from now on! Cancer sux, but the perspective it puts into your life is actually a hidden blessing! Thanks again for all of you and your knowledge 0 -
barberchic every day, year etc is new even if you didn't get this disease. Eventually it will become less on the top of your mind. Funny but I do come here a lot but think about it more about being about everyone else. I want to keep up supporting newly diagnosed and with my knowledge but rarely do I think about my diagnosis. I have to friends right now with mets… I think about them often.
Tests are only as good as those reading them. I know my HER2+ was tested at biopsy then again after BMX. After BMX will be the most accurate. Also there are different types of HER2+ tests. FISH is one of the most accurate. If you didn't have that one then that's why there was a question.
Go out and celebrate… you're not HER2+. That's a good thing!
0 -
I will
0 -
So, lago, which thread should I look for, with my new dx?
0 -
Right handed, left breast. Have a nice weekend all!
0 -
Barberchic - my understanding is that with initial pathology an IHC test is done for HER2 status. If it comes back equivocal then the MO can ask for the FISH test to be performed, which is more expensive.
I had FEC x 3, Taxotere and Herceptin x 3 and now Herceptin x 17. The EC part of FEC is Ellence and Cytoxan. My experience with it were that the initial symptoms were more intense, especially the nausea, but I felt pretty good for the two weeks between treatments. After the first treatment I learned better how to manage the side effects. I di not have nausea with the TH but the other side effects like fatigue, neuropathy and muscle aching were worse and lasted longer.
PBrain - you do 'rock' that look
Thanks to all for the info re: Tamoxifen and metabolizing
Has anyone heard of this test for seeing effectiveness of Herceptin?
http://www.hertestonline.com/0 -
barberchic you can always start your own but check under
community.breastcancer.org/forum/96
and
community.breastcancer.org/forum/108There are threads for all sorts of things like starting chemo this month, surgery etc. You can always start your own thread. My advice is to be sure the title is something that people will be able to understand the topic. If you just post "Help me" its not very descriptive and people may not bother.
But this is one of the more active threads that are not in the stage IV section so stay here. There is a lot of information that will help you too.
0 -
Sasha,
I finished chemo #3, 10 days ago and I feel relatively normal. I received extra fluids on days 4 and days 6 after the chemo. My first two treatments were a nightmare - I went to the ER after each treatment, because I felt so bad. Having the extra fluids has made the biggest difference - the only problem I have had is extreme fatigue.
Only after I talked with my MO after how difficult the first two chemos were, did they offer to do the extra fluids. It was almost like I had to ask for it.
0 -
Vballmom, wow that is great information. I will go ahead and push for the test, and pay out of pocket if need be.
Likewise, good info Lago, as usual!
Barberchic, if you are not her2+, and you’re node negative, there’s a chance you might not need chemo. I would ask for the oncotype test before you proceed. Personally, I think congratulations are in order. So congratulations! I’m sure there are other great threads on this website for your diagnosis, though of course you are more than welcome to continue to hang out with us!
0 -
Hey Herstrong! Congrats. You are one of the rare triple positives who had ILC, like me. Gives me a boost to hear from you on the other side of H. I just finished my last TC on the 22nd.
0 -
Lago and Tonlee, both of you are beautiful! I'm looking forward to looking cute again!
0 -
Powermom you will and probably do already. You're just still feeling a bit crappy from all the chemicals, surgery, emotions etc. Takes a while for the body to recover.
0 -
TRIPLE POSITIVE *WITHOUT* RADIATION?
Hi Ladies, this is my first post here on the Triple Positive forum - I've been hanging out over at Weekly Taxol. But I have a question specifically for us Triple P people, and I wonder if I should start a whole new thread? But then I don't really know how, so I'll try here first.
I'm wondering how many of you did NOT have to have radiation, and if not, why? I'm scheduled for everything they can throw at me: almost finished chemo (CANNOT wait), also on Herceptin for a year, due for a lumpectomy end of May, then rads and, at some point, Tamoxifen. But IF my surgery is successful, with clear margins and no node involvement, why would I still need radiation?
I'd love to hear what your oncs told you.
Thanks!
0 -
Snax lumpectomies always get radiation from what I can see and some MX as well. Why? Well our current equipment to see cancer cells can only see so small. There is a chance that some cancer is so small and can't be detected by our current equipment. The rads will kill anything that might be left behind.
In my case I was in a gray area eventhough I had a BMX. Typically tumors over 5cm also get rads probably for the same reason. I believe I got a pass because my tumor was in the posterior region above my heart. The risk to my heart, lungs and ribs was probably very high and the benefit not that great compared to the risk.
0 -
Thanks lago. I think the reason I'm confused is because I thought the purpose of chemo was to get those miniscule, undetectable cancer cells wherever they are in the body. I can understand lumpectomy + chemo or lumpectomy + rads, but not all of it PLUS Herceptin and Tamoxifen.
Having almost finished chemo, I anticipate rads to be a walk in the park, but I'd still like to understand the science behind it.
Cheers
0 -
SNAX: You are asking the question so many of us asked. I had lumpectomy first and all was clear and then on to chemo (TCH) and then Rads. As Lago said, the rads are in case some little cell is left behind that was missed. Then the Tamoxifen (I'm on Arimidex) keeps the hormones low.
Good luck and welcome!
0 -
Greetings. Had surgery on Thursday afternoon, went to work all yesterday, walked 5 miles today. Feeling great. Not even a tylenol so far. We are having a debate about Herceptin as my HER2 test is equivocal. Have the GAMU (?) heart evaluation on Monday and that will tell if Herceptin is an option. HER2 equivocal ladies--did you proceed with chermo/Herceptin or just radiation and the long term hormone blockers i.e. Arimidex. I'm getting a 2nd opinion as to use of Herceptin. Sorry if my terminology isn't accurate. I am VERY new to this. But glad you are all here to offer your experience.
My stats haven't shown up yet. ER+/PR+/HER2+?, Signal Node & lumpectomy 3/28/13, 0/3 nodes involved, 8 mm tumor.
0 -
Snax that is true that chemo should get any strays that might have entered other parts of your body but this local area is a bit more challenging. Because you have had surgery the blood flow to all the areas is not the same. It is still healing or damaged. Rads will get to those areas. I know a gal who decided not to use my BS because he wanted to removed the scar on her skin from a biopsy she had years ago. This would have left her with a really big scar (she had a bmx).
Well 1 year later she had a local recurrence right under that scar. She had to do rads and more chemo because of it. Granted it was a local recurrence so she isn't a stage IV but she is not happy about now having to do chemo again (she isn't losing her hair) and now rads when she didn't have to do it before. It's messing up her reconstruction a little too.
0 -
lago, that's one of the best explanations of the benefits of radiation I've ever read. Thanks for posting that.
I was supposed to hear back from the radiation oncologist a week ago but still haven't gotten a call.
0 -
Greetings. Had surgery on Thursday afternoon, went to work all yesterday, walked 5 miles today. Feeling great. Not even a tylenol so far. We are having a debate about Herceptin as my HER2 test is equivocal. Have the GAMU (?) heart evaluation on Monday and that will tell if Herceptin is an option. HER2 equivocal ladies--did you proceed with chermo/Herceptin or just radiation and the long term hormone blockers i.e. Arimidex. I'm getting a 2nd opinion as to use of Herceptin...the CHF possible side effect seems scary. Sorry if my terminology isn't accurate. I am VERY new to this. But glad you are all here to offer your experience.
0 -
Navymominohio - glad you are having an easy time so far postop lumpectomy. Usually if the HER2 status is equivocal they will send a sample off for a FiSH test, sometimes it can take a bit for the results to come back. Do you know if they are going to do that for you? if positive after FISH test then the MO would strongly recommend the chemo/Herceptin for you.
The MUGA scan is a scan of the heart, usually done prior to Herceptin to get a baseline reading, Herceptin can have cardiac effects and so they perform MUGA scans or Echocardiograms on a regular basis (usually every three months) while you are having Herceptin and for a period of time following.0 -
Thanks Websister--FISH was also done. Results still not clear (at least to me) but oncologist (who says he is very conservative) says chemo/Herceptin is absolutely the way to go. I like my treatment group, so I am inclined to say lets get started as long as the MUGA scan comes back without any contraindications. Tumor board at hospital looked at my case same day I was in surgery and I will soon learn what they said as well. Just mentally adjusting to all of this.
Elkatho--looks like you and I may be traveling the same road at about the same time......I will look forward to watching for your posts occasionally. Preparation for the Sentinal Node Biopsy (which sounded creepy when I googled it) was absolutely no big deal. Three injections that felt like a quick bee sting. I shall think if you on surgery day & hope it goes smoothly for you as it has for me.
0
