TRIPLE POSITIVE GROUP
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Anyone else saw this article "Breast Cancer Treatment with T Cell Eradicate Advanced Disease in Patients" ?
https://www.npr.org/sections/health-shots/2018/06/...
Hope that's true and things going to change from now on.
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whywhy - this is on the far horizon and will hopefully be the targeted and personalized cancer treatment that we all need, but won't be routinely used for a long time. It worked in about 15% of the patients who had various kinds of cancer in your link, so hit or miss at this moment of the trajectory in the research process. Harnessing the immune system - in this way - is now being used with some success by adoptive cell transfer in blood cancers and some solid tumors, much as the breast cancer patient in the link. I watched the Ken Burns documentary The Emperor of All Maladies, based on the book by Dr. Siddhartha Mukherjee and they showed the process for this with a melanoma patient.
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SpecialK & others (especially other IIBs) - I had a single MX after chemo and just found out there was still some cancer seen in the breast tumor and the 1 originally diagnosed lymph node. Size had decreased 80-90% so largest spot left is about 3.5mm in node and about 2mm in breast. I don't have report with any other info yet. Before surgery, an appointment had been set up with Oncology radiologist. Do most people get radiation after a result like this?0
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triple - I was treated prior to the use of Perjeta and most of us from that time period had surgery prior to chemo unless we had a tumor close to the skin or chest wall, or a really big tumor that needed shrinking to achieve good margins - so, other neoadjuvent IIB ladies will have to chime in on your question. My inclination is that such a small amount of residual cancer in the breast means that you had good margins, and if the node was removed, so was the cancer there, so I am not sure, but a consult with a rad onc would be a good idea. What does your MO say?. I had my cancerous nodes removed prior to chemo, and did not have rads, both MO and BS said it was not necessary.
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SpecialK - I think my MO may be out of town and will see him next week. My surgeon called with the sizes and few other details. Thanks for responding so quickly. I appreciate all the info you share!
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HapB,
I am doing ok. Still have side affects from all of the chemo etc. The biggest ordeal now is that with tamoxifen and a family history of endometrial cancer I am now scheduled to have a total hysterectomy on Monday June 11th. I went to have a base line done of the uterine lining, they found a growth, had surgery to remove it a few weeks ago. It was benign (so grateful for that one) but there were some atypical cells. The obgyn said I fall into the "lucky" 5% that tamoxifen will cause issues for (lining is already thick etc.). In the middle of trying to get all of that scheduled I had my 6 month mammo checkup and the radiologist informed me that one of the biopsy markers they placed in nov of 16 is still in the exact place they put it. He pulled the films from the lumpectomy surgery, compared, and it has not moved. He recommended removal of the clip and that area. I had two tumors and I remember the surgeon telling me the larger tumor had been reduced to 3mm and there was no trace of the smaller one. In my mind I am thinking he missed the smaller tumor bed - that is why there was no trace of it. Needless to say I had a follow up with the surgeon. He says he is confident he got it all. So I have a radiologist saying the clip area needs to come out, the surgeon says it is fine, but he will operate for my peace of mind. To make a long story short he is going to piggyback on my surgery on Monday, that way I will only be put under once, one recovery time etc. etc.. I am not thrilled to be having another lumpectomy on top of the hysterectomy but it is what it is. If I was not having the other surgery I would be pretty angry, but as the impact should be somewhat minimal I just want to get it all over with. Before they found the growth I was just starting to feel a little better. As it always seems with this disease, just another kick in the pants. It has been a stressful couple of months. As it is I am grateful that I have a friend who is a retired icu nurse who is going to come stay with me the week of surgery. I feel very lucky on that one. It is hard to go through all of this treatment as a single person (as you know) and manage treatments and surgeries. Just hoping this will be the last surprise for awhile. I think I have reached my limit.
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Oh MoodyBlues ...what a wonderful, encouraging post.
Vicky
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Hi TriplePH
I was staged 2B before chemo, grade 3 with a 3.5 palpable tumor behind the nipple and two palpable adjacent nodes that came positive for cancer, size like 1cm. After chemo, the breast tumor was not palpable and neither were the lymph nodes, and the MRI was clear. Then I had surgery, which was unilateral mastectomy with axillary lymph node dissection and the pathology report came still positive for cancer, with an area of 2.5 cm in the breast showing scattered cancer cells, plus two nodes (out of six) with cancer, between 2mm and 6mm. I was pretty devastated about the news because they didnt expect to find so much cancer. According to MO and BS, this left me in a grey area regarding radiation. If I understood correctly, if you have three nodes or more affected you go straight to radiation but I only had two. Still my MO recommended radiation and talked to the RO and they talked to my insurance, which approved, and I started radiation today. It will be 5.5 weeks of radiation.
After the chemo and surgery my cancer was also downgraded from grade 3 to grade 2.
LaughingGull
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Thanks Moody. Well said
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LaughingGull - Thank you for sharing your story with me. I hope your radiation goes well. I have a feeling they still plan radiation for me but won't meet with M oncologist until Tuesday to ask what he thinks. Take good care😀
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TriplePHTown, i am not sure if you did neoadjuvant chemotherapy, though even if you did, for triple positives it is not unusual to have some residual disease. A PCR, pathologically complete response, is less typical with hormone positive HER2+ disease. In any event, if you want to read further, below are some links:
http://www.breastcancer.org/treatment/radiation/wh...
https://www.mayoclinic.org/tests-procedures/radiat...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC46992...
If these publications don't address your situation, I can dig up some other links. Last year I struggled with the radiation decision, but after neoadjuvant TCHP, I had no residual disease (IDC or DCIS), I was node negative as well. This might seem like a great outcome, but as my nodes were not biopsied, I always wonder if they had been positive but that the chemo got them. I will never know. In my case, radiation was not deemed necessary.
If you do neoadjuvant therapy or surgery first, there are questions that are only answered after final pathology which drives further treatment decisions.
Good luck next week with your appointment.
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Hi ladies, I have contacted both my oncologist's office and gynecologist office but have not heard back from them. I completed 12 weeks of chemo yesterday. Thank goodness chemo is done! This morning, however, I noticed a brown vaginal discharge which has never happened in the two years since I've reached menopause. Of course, this is so scary for me even though I just had a Pap test in October which was fine. Do any of you have any experience with this type of thing? Thank you in advance!
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Thank you Suburbs for posting those links. I was reading them. Very informative. I could have used them a few weeks ago when I was agonizing about the next steps in my treatment.
To chime in the latest controversy, I agree that the NYT article was not particularly relevant for this group. Still, posting it here shouldn't be a big deal. However, it added one more push to the relentless stream of posts digging and questioning and raising doubts (and often obfuscation) to just about everything mainstream breast cancer medicine. Some of these could be no doubt interesting, but I don't think they were as useful to the community, in general, as to justify consuming almost the entire bandwith of the group. As an example, notice that someone -I believe the nickname was lsambo- reached out here for what sounded like much needed support and didn't get almost any answers....it got quickly buried by the deluge of posts calling into questions trials, research design and what not. moving at lightning speed and eating all the space and breathing room. I am glad to see that the volume of those seemed to have quieted down.
Love and peace to all,
LaughingGull
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For the third time (3 weeks ago), I have discontinued Tamoxifen due to severe bone pain. This last time, I took it at 1/2 dosage for almost 3 months thinking that I would have a better success rate for compliance. I'm still having bone pain to the extent of having to take a Tylenol3 last night (I know it stays in the body for a while after discontinuing).Has anyone who couldn't tolerate Tamoxifen been able to move on to a different hormone therapy with less s/e's?
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For anyone new reading who has not yet had surgery or started chemo, the post by suburbs above is one reason why I have recommended for those having neoadjuvent chemo for Her2+ disease and are having their port placed they also have a SNB done to determine nodal status. This sometimes takes some assertiveness and coordination between departments, but imparts valuable information on nodal status if it is previously unknown. I had positive nodes that were not detected by palpation exam by my oncological breast surgeon, or by any imaging which included pre-surgical MRI. The node size was larger than the minimum threshold for ability to be seen by both ultrasound and MRI, but still escaped detection. Without an accurate SNB the additional, much larger, cancer would not have been found.
tld - chemo can irritate soft tissue, so sometimes this can be a result of that irritation. I did not have this experience but I had a total hyst/ooph a long time before diagnosis of breast cancer. You are doing the right thing by calling your docs, but hoping for you that this is just a temporary end of chemo side effect. I would say that it is important to get to the root of this though before you start any anti-hormonal therapy so as not to muddy the water, a number of oncs give you a break after chemo to reset before starting anti-hormonals.
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LaughingGull I don't think we'll see any of those posts anymore. That person seems to have disappeared from the boards. All the posts have been permanently deleted, which may cause some confusion to new members reading through, wondering what on earth is going on.
I think this wonderful community can get back to what it has been and help each other get through.
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Lately this thread has made me sad. When I was diagnosed, SpecialK and Lago (and others) helped talk me off the edge. I had so much fear and anxiety. Never could I image being here 4+ years later and doing as well as I am. They helped me see that there have been so many advances for Her2+. A diagnosis that years prior had been pretty bleak but now had the same odds as women that were Her2-. This thread is here to give encouragement, help women deal with SEs, and just LISTEN to how they are feeling. People that haven't been diagnosed have no idea what it's like to be here.
Treatment isn't perfect but it's the best we have right now. I'm glad to see the changes that have been made since I was diagnosed.
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Mommato3, thanks for posting. Several years out and I assumeyou are doing well. That is great and gives me hope. I am sorry that you are sad. Like you, I am so grateful for the increase in options available. I'm throwing the book at this gremlin and hoping it sticks. All the best.
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Blownaway, I was not on Tamoxifen but had similar SE's when I was on Arimidex. I had terrible bone and muscle pain that just kept getting worse. I was switched to Letrazole about a year ago and my pain is much more tolerable. I hope you find an AI that you can tolerate without too many side effects.0
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SpecialK, thanks for your response! I did finally hear from my oncologist's office and the nurse practitioner said that the bleeding was an unusual side effect but nothing to be concerned about at this point. They do hear of it on occasion. If it gets worse (it has not), I am supposed to contact them again. I feel better about it now. It seems as though there's always something to worry about during cancer treatment!
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tld - I’m so glad, and I think most of us find that the side effects start to drop off the further out from last chemo you get. I found I started to feel much better at about the six week point PFC. I think it’s hard for us as TP patients because even though chemo proper is over we continue with targeted therapy, which can prolong some of the problems that cropped up during active chemo. I didn’t experience this, but hair and nails can be impacted, as can blood counts. Keep track of things and always let your docs know, especially if something new or unexpected happens.
Mommato3 - good to “see” you!! It is indeed heartening to see continued progress for TP patients - while I will confess to feeling oddly envious of those who have been able to avail themselves of the newest treatment, I am also so happy for my fellow TP-ers that these new drugs exist and are providing health and hope for the future.
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i had my annual check up with my gyne and she did some blood works. she said i am not in menopause but my estrogen is <6.. my FSH is 13.2 ( ovulation phase). i asked her about this and she said its like my ovaries are asleep.she actually saw some egg cells when she did an ultrasound... i have been on zoladex since august of last year and arimidex since january of this year..as our cancer is estrogen driven.we only care about estrogen levels, right? any thoughts on this? SpecialK? will see my onco tomorrow...
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kae - depends on where the estrogen is coming from... aromatase inhibitors will only suppress estrogen produced enzymatically from androgens. There is no effect on ovarian produced estrogen. Your number in single digits is the desired range while on meds, so I think that is good. Are your gyn and onc in communication? I have found that some oncs have a tenuous grasp on female hormones and using ovarian suppression is complex
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SpecialK, yes i was thinking that my estrogen number is good so i think i am good.no my gyne and onco are not in communication. my gyne is a new one( really like her) since my old one changed to a different medical group. will ask my onco tomorrow.thanks!!!
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kae - of course! Please report back on what your onc says, I’m curious. I had a Femara holiday and had some sensitive estrogen testing done - I am surgically menopausal - and I was uncomfortably surprised how high my umedicated level was, so I’m not on the holiday anymore!
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Wow - you guys can really layed it on " it's not what you say it's how you say it?" Really ??? from how many kilometres away do you know this ? by what extraordinary means of telepathy? because I can assure you after working for over 20 years with BC patients almost all the above posts on HapB did not sound like she was offered empathy and support. I mean does she have to pass a personality test to get through the cancer door of support of triple positive?
Please don't do this again - you are all stronger kinder and infinitely better than this - and while it's clear that Herceptin is Da Bomb in HER + BC, it's also very hard for the few who do not tolerate it - it's a shit slog - and we could all do with more patience and compassion in our lives.
What would I say to the newbies - be afraid of your cancer BUT not of women with cancer, seek the best treatment you can get and stay informed, keep reading what resonates with you, find your instinct and hone it - above all cultivate patience and be compassionate. Your life will change a little - first accept then chance. But I would not hide information from them. They can choose to not open a link if it's not the right time for them,
HapB wanted to share her story. All stories have a little wisdom behind them, and no story has it all. It's our standing together and honouring our differences, particularly when we are challenged by them, that forms the basis of all democracy.
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Blownaway,
Aren't you post-menopausal? Have you tried an AI? I'm on Aromasin and it's OK. It's given me osteoporosis, which means I take more meds, but I don't have severe joint pain. I just feel a bit creaky when I get up if I've been sitting for too long.
Wildplaces,
I believe you participate in HapB's diet and exercise thread and are not a regular participant in this thread. Thank you for your input.
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My input is that a few harsh but not content filled posts have driven away from this site a woman with BC in her mid 60s - who was known to be struggling with her treatment and had cardiac side effects from Herceptin - to the point where she shut down all her contribution and thriving thread because someone just had to have the last word and you could not show her some patience through some of posts.
Did anyone here feel she needed support? You can not just talk about kindness, you have to practice it.
We are all women with cancer - I don't believe that one person can change a thread, even if the posts are a little different/controversial from main conversation, but I do believe clinggines and unkindness can hurt people. Thread gently and own your words - this is virtual world and none of us know how they will be received
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wild places, I am so sorry your diet thread was erased and hope that you will kindly try to keep it going. You are right - one person does not make or break a thread. One person should not be able to delete one either but rules are rules. I had to leave this thread for quite a while because Hap didn’t like my opposing view posts and slaughtered me with unkindness boardering on meanness. Most of those posts were either taken down by moderators or edited by Hap to make them sound innocent. They weren’t - they were hateful and calculated to be so. I was not the only victim. Heard from many. Also encouraged by other posters to come back & ignore. I did so except when I was again attacked & decided to not be a victim.
You have not been here very long so you haven’t been privy to all the loving kind responses and support Hap has continually received. The controversial subjects Hap posted were not an issue. Where the issues always (and I do mean always) began was when someone posted contrary to what Hap wanted us to believe - an opposing view. It was then when she became a pit bull in a demeaning & sarcastic manner along with threats to never come back. I honestly believe she would have deleted this thread if she could have.
I, along with I believe everyone who posts on this thread, wish Hap nothing but the best & continue to pray for her. It is time for this thread to go back to the loving kind support it has been known for previously.
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Suburbs - Thanks for posting the links to those articles on radiation. They are very helpful.
The last article you attached mentioned MRIs a bit and I was wondering what the follow up most people were getting after surgery and radiation. My doctors made it sound like their follow ups would be 6 months the first year and then annually, with just a 3 d mammogram or exam. Considering that I have dense breasts and one of those is still hanging around, I was wondering if that was it. No one mentioned CT or MRIs.
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