TRIPLE POSITIVE GROUP
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Mine was actually installed during my BMX so I have no scar from putting it in. It is in plain sight at all times but it is so small nobody knows it is there. I have an old skin cancer scar just to the side of it - I am hoping they can go in through that same incision line to take it out. Whenever that is...
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when my grandchildren jump into my arms, my port will often get hit. that hurts really badly. they hit it accidentally, too, whenever we playing or whatever. it must be like specialK's because it's also 'in plain sight.' sometimes i worry that it's going to pop out and i'll bleed to death before anyone can get to me. ha. i sure can some up with things to worry about.0
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I have been on herceptin since mid May, started with taxol then went to herceptin alone. I didn't really notice much joint stiffness on the taxol/herceptin, but started really feeling it after a little while on the herceptin alone. I also had mastectomy and flap surgery right after finishing taxotere with herceptin. I was literally crawling up the stairs. Now I barely notice it. I am not sure if I got used to it or it's better, but either way, it's good. The NP said maybe it's better because I am further out from chemo, but it didn't even start until at least a month after I was done chemo. Who knows. I think the weather played a part in it. It started when the weather turned cold. I hope yours gets better soon too.
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Oh I meant to say the other thing was I took the mega doses of vitamin d and got that up. I wonder if that helped the joints? NP said she didn't think so, but I am not so sure.
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Kay I bet the mega dose of D is helping. I know my onc wanted my D levels checked again (was very low a year prior to seeing her) because she said that women experience more joint pain on hormone treatment if they have low D.
My port, although a juvenile/smaller port sticks out a lot and is noticeable. I'm very thin on top. I think the only fat I have on my upper body is what my PS put there with the fat transfer.
In the summer I don't bother to cover it. The only time I make sure it's hidden is if I'm non a job interview. 0 -
YaYa your statement about finding things to worry about cracked me up! I am the same way. I sure can be my own worst enemy.
Thanks everyone for the continued tips!!! My new onc that I saw yesterday is testing my Vitamin D levels. He believes you need more vitD than the standard USDA requirement in your daily vitamin. I plan to read more about this, but if anyone wants to share their thoughts/links/etc. feel free!
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Hi everyone: My onc is being really aggressive and wants me back on Herceptin. She wasn't waiting for the new cardiologist to wait until mid March for my echo so called doctor to doctor and it is being done today. Has me scheduled to start Herceptin again on Tuesday. She wants EF at 65 before starting again....whoa! We'll see.
Anyone had a CTC (Circulating Tumor Cell) blood test. I had it this morning and the nurse said it is relatively new. She didn't even know too much about it yet either so didn't want to talk too much.
Arlene
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Arlene A
CTcells tests are state of the art tests. Your doctor is up to the minute. I'm going to ask mine about it next week.
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Ashla and Arlene, the CTC sounds pretty interesting. Looking forward to learning more about it. Thanks for sharing!
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My understanding is that at this time the CTC testing still is used for metastatic patients, and is not used for early stage bc. I'd welcome news to the contrary.
AlaskaAngel
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AA, that seems to be what I was reading, too, in the few short articles I just reviewed.
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CTC testing for cancer (circulating tumor cells) has been around for a long time. You can take a look here:
http://www.nejm.org/doi/full/10.1056/NEJMoa040766
The New England Journal of Medicine is a very prestigious and well respected journal for the medical world.
You can ask your doc to do a CTC but he may not want to. You can also ask for a CA 15-3 to be done every 6 months or whenever you see your doc on a regular basis.
tucketwo- The Lab Rat
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I just read this article (but still digesting it - lots to take in for someone who's new this this):
Oncologists Need Long-Term Perspective with Breast Cancer Adjuvant Hormonal Therapy
I thought others might find it interesting as well. This section really caught my attention, since I have been unsure of the benefit of getting the Oncotype on my small tumor. I have been leaning towards having it done, just to see what it says...but it appears it could also provide useful info regarding a person's potential response to Tamoxifen:
"Recent data suggest that simple available tests may identify an estrogen receptor-positive population that does not benefit from adjuvant tamoxifen. Low levels of ESR1 mRNA measured in the Oncotype DX test correlated with no discernible benefit from tamoxifen in a retrospective subset analysis of NSABP B-14.16 Any study of new extended adjuvant hormonal therapy should look at gene expression profiles at diagnosis. If low ESR1 mRNA levels indeed define a group of patients resistant to hormonal intervention, we not only will spare them toxicity, expense and inconvenience, we may enter them into trials seeking effective therapy for them."
It seems like if you found out you had low ESR1 mRNA levels on the oncotype, and you were premenopausal, would it then be worthwhile to consider ovarian ablation to get into menopause and be able to take an AI? I hope I am not way off track here - I am in the very beginning stages of learning so bear with me.
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dancetrance,
Here is an article about the effectiveness of Tamoxifen depending on whether you are a normal metabolizer of CYP2D6. You can be tested to see whether you are or not, Independent labs will do the test.
http://onlinelibrary.wiley.com/doi/10.1002/jps.20892/full
So, what the article is saying is that if your CYP2D6 tests to be not a normal metabolizer there is no point in your being on Tamoxifen. I was tested and found to be 'normal metabolizer' but decided against Tamoxifen in favor of natural alternatives. Doctors and drug companies won't tell you about this test -they are hoping to sell you drugs, whether they work for you, or not.
BTW you can check out my topic about the FDA and drugs. It's pretty interesting.
tuckertwo
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Thanks Tucker. I wonder if it has the same connection to the ESR1 mRNA level. I'm not opposed to taking Tamoxifen, however I do want to make sure that it will benefit me before I start taking it.
P.S. Why would you even have considered Tamoxifen if you are ER neg? I thought Tamox was only for ER+ who are premenopausal???
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I was under the understanding that CTC were not reliable. My BS told me this and my onc told me she doesn't to them.
BTW that article is from 2004
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I am weakly ER+ and my doc said I would benefit 4-6%. Not enough benefit to outweigh the risks. For me
I am doing alternatives that are natural and are working quite well to balance the estrogen. CTC's are not new. I can find a more recent update if you like. Docs don't like to rely on tumor markers because many things can alter results such as inflammation or even having a cold. Still I insist on doing the CA 15-3 every 6 months. I think it's good to have a baseline so you know if it goes up or down.
Do you ladies know that you can get your estrogen levels tested - it is a simple blood test .It's good to know how much bad estrogen you have. Also you can have your DHEAS level tested. DHEA should not be elevated. Any lab can do these (well, they do them here in Canada). Keep being your own advocate
& stay well!tuckertwo
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As a HER2 positive long before there was the controversy and development of CYP2D6, I presented the additional question to my PCP and onc about the worse outcomes for 1/3 of HER2 positives who had high AIB1 levels. I did not get any intelligent answer to the question of my HER2+ status in regard to possible high AIB1 level. But since the only drug available for premenos is tamoxifen, and since they failed to provide any explanation for giving me the tamoxfen, my best guess is that because 2/3 of those who are HER2 positive do not have high AIB1 levels, they decided not to share the question of whether it would be harmful to me with me prior to putting me on it.
In that same kind of thought process, it is possible that oncs do the same thing with some HR- patients, or some who are barely HR+, rather than subject them to O/A, in the hope that it may magically provide some protection to them. That way those patients still would do chemotherapy rather than O/A, and oncs still do tend to favor chemotherapy over O/A. I personally am simply not sure they are right about that preference, given that those who receive chemotherapy suffer so much, including damage to their immune system and all the effects of all the support drugs and prolonged chemo-driven illness.
A.A.
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FYI:
http://www.breastcancer.org/symptoms/testing/types/blood_marker.jsp
tucker---- Tamoxifen is used in postmenopausal women as well.
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My providers have routinely done either the CA 15-3 or alternatively the CA 27.29 periodically for all of their breast cancer patients. Mine has been entirely congruent throughout the years with my continued mammographic/MRI of no evidence of recurrence. However, as tuckertwo mentioned, they are not always reliable for everyone.
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Tuckertwo my esteriol levels were tested for months when I started Anstrozole. I was peri menopausal before chemo with regular periods. My last one being 2 week before my first chemo. My onc (and I agreed) that I was done after c hemo so that's why I'm on an AI and not Tamox. Also based on my family history (mom & sister) highly unlikely it would come back just so I could go through menopause. She wanted to be sure so I had tests for several months. I have the esteriol levels of a pre-pubescence male acording to the tests. 0
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Thanks Tucker for the explanation!
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welcome, dancetrancer!! How are you doing? I am a bit confused about your dx. Did you have recurrence after the grafts?
tucker
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No tucker, my diagnosis was delayed. They missed the 3 mm IDC; 4th path review in January found it (BMX was in September). So I just recently found out I had a very small IDC that is HER2+. I need to fix my tag line so it isn't so confusing! My bio on my page explains the whole confusing mess!
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What's the difference between the CA27-29 and the CA15-3? I thought the CA27-29 was more specific for breast cancer.
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tucker - thanks, I'll ask my onc about the CA15-3.0
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Lago....my PCP did a full hormone workup at my last appointment in November. I remember showing the results to my NP bff and asking her if it said I had the hormones of a male teenager also! Lol.
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My body temp is all over the place. One minute I am cold and bundled up, the next minute I'm hot and can't uncover fast enough. I am assuming this is what you guys call chemopause as I am not on Tamoxifen yet.
Also, I got a great wig from PaulaYoung.com. Human hair blend with monofilament part. Looks great and almost like my old hair style. You can supposedly blow it dry on moderate heat, but I don't even need to do that. It was $69, so even if it doesn't last the whole time, it wasn't much more than getting a haircut.
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