TRIPLE POSITIVE GROUP
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PoseyGirl, my BS told me when she was presenting pathological report that Grade 3 in TP tumors is almost always a sign of strong Her2 overexpression and higher Ki. I am looking for Ki67 research right now.
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Ladies, I know we are having a scientific discussion now and I am very into it, but I just wanted to tell you that I cooked Rebecca Katz Magic Mineral Broth and I am overwhelmed, it is more than I have expected. Here comes the link:
https://www.rebeccakatz.com/magic-mineral-broth
It is delicious, earthy, a bit sweet and mine is also spicy I had in it half of my own grown chili. I did not have kombu and junipers but I had sage and rosemary. I am having it right now, it is 1 AM in Stockholm, I had my weekly Taxol today and am high on cortisone but will head to bed soon. I just wanted to share it with you. I am very into soups and cooking in general.
Cherry
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Thanks for sharing the recipe link Cherry. I believe in the magical properties of broth! Congrats on finishing another taxol, rest up!
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HapB, I am very sorry that your mom was sick while you were young and you felt this way. Kind of explains why you are so protective of your daughter and do not want to be a burden. But if you are feeling alone, call her, I am sure she will come and visit you. It is ok to feel low and accept their help, this is one of the reasons we had children, not be alone, to have them around us, especially during the times like this. My eldest wanted to come with me to my chemo but I told her no because the environement in the clinic is so depressive, no tv, just a bed, they could do better. But if my husband would not have followed I would have reconsidered. You all said they are resilient, in times like these we have right to expect all help we can get. Cherry
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Thank you, T-Sue! I think I will have another cup first, not without my soup.
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Thanks, Cherry...I remember seeing that. With 90% staining, I guess it's clear that I'm hugely Her2 positive.
I could read and read and just get myself stirred up. I think I'll stop reading the studies for now. I do see, however, that more research is needed on the Her2 ratios, etc., in terms of treatment response.
Thanks for that lovely link, Cherry! I will look at this; it sounds awesome
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thanks guys...shes five now (she starts kindergarten tomorrow) and we have started counseling with her (and my son)...hugs to all!!!
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PoseyGirl, yours Her2 figures are from IHC if I understand correctly. I was told that they did IHC on me but it looks I got FISH figures: score 7 and 13,8 copies. it is high, when I ask the second oncologist told me that she did see higher.
Somewhere on these boards i saw that chemo is the most effective when Ki67 is around 50%. This turned to be exactly my figure so I hope it is true. But higher Ki is associated with high recurrence risk too. My oncologist though said that other factors weight more than higher Ki.
My GP is a lovely lady but she keeps saying to me that all this research does not contribute to my mental well-being. She wants to put me on an anti-depressive instead. Next time I will ask her what she would do if she were me. I am not depressed, not yet I believe. I have PTSD like coachvicky said and you cannot treat it like depression. My GP told me that I should gather my strength for the treatment and I said shouldn't I understand all about the treatment and about my chances.
Cherry
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Cherry, I'm making my second batch of magic mineral broth tonight! It is amazing stuff. I ordered the Rebecca Katz cancer fighting kitchen from Amazon on Friday and it's going to be here tomorrow! I'm so excited. I love cookbooks!
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toughcookie, it truly is I cannot praise it enough. I have also ordered a book called something Anticancer food recipies from Amazon right after I got my diagnosis and I never got it although I paid with my card. I have to follow it up.
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HapB, I am sorry about the broken home, my husband comes from a home with parental misconduct. A lot of problems comes from childhood. He is very protective of our children. I always wanted a family. I have an aunt who is in her late 70-ies. She lost her son to alcohol abuse when he was still young. She has always been sick and lived with her new partner in another city. My cousin grew up with our grandparents, and I think it was best for him. But now we are her only family, she lives close to my parents and rely upon us. She is very afraid of be left alone, now when my mom is here with us I know it is hard for her. So, I did have my children for many reasons, but one of those was not be alone, not only when I will be old because at the moment I do not know if I will make it to old but also . to experience all this amazing journey. I know people are different but I do not think your daughter will end up less independent for being able to help you, you know you will be happy to see her, she knows that too. You cannot be a burden, you are her mother, tell her you miss her and want to see her more often. It can only be for the better. Hugs, Cherry.
Otherwise, the cats are quite a company too, mine is sitting besides purring, she had to sit up, she got hiccups. And now she went to eat more.
Good night everybody, it is 2.15 AM here
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HapB, this is Magic Mineral Broth, let me introduce:
https://www.rebeccakatz.com/magic-mineral-broth
Cherry
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Deleted - the dreaded double post, lol
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hap - it's important to understand the chart you posted - the US is showing roughly double the breast cancer rate of the Caribbean, yet we have 10 times the population, so the chart shows a somewhat distorted picture. Micronesia is 8th on the list but only has a total population of 100,000. As far as moving to Asia, those countries have a high rate of stomach cancer, pretty close to our breast cancer rate, but the survival rate is worse.
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My reference is regarding your comment about industrialized countries and cancer rate. If Micronesia ranks pretty high but only has a total of 100,000 residents it is unlikely that they are industrialized. Same with many of the Caribbean nations. I think it's important not to assume too much about causation - there is still a lot that we don't know about what causes breast cancer.
Edited to add - you might consider signing up for Dr. Susan Love's Army of Women, her organization is looking at people with breast cancer, and those without it, to better understand why it happens. Here is the site:
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Cherry,
Got you beat on FISH test results. My average HER2 signals per cell was 14.9 and my score was 9. I guess MO was right when she said that my cancer "was growing like kudzu in the lab." Oh well. I had a good response to chemo and targeted therapy -- no active cancer left after AC + T.
Thanks for the info about magic mineral broth!
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Hapb, I think the chart is compelling. Although we can't nail down causation, there is clearly enough of a difference that we must look at everything we are doing here to harm ourselves. The very long article link I provided day before yesterday delves into many areas of causation.
Another thing we need to keep I mind is that in the developing countries, I'm sure there is a lot less reporting of BC than where we are...i.e. many very poor women will not be getting treated and will die of the disease before they even know they had it. That aside, I'm sure there still is a substantial statistical significance.
Speaking of stats, I am a bit OCD and did more probing into the Stage IV board here on this site. I looked at 279 women who had shared their earlier stage and type. Anyone who didn't do that wasn't included in the evaluation. To start, I wanted to see what proportions each of these cancers made up of the total to compare with literature on the same.
For ER+/PR+: there was a total of 165, making up 59% of the total
For ER+/PR-: there was a total of 27, making up 9.6% of the total. So if you take the aggregate of hormone positive types, that is about 69% of the total.
ER+/Her2+: Total of 14, making up 5% of the total
ER+/PR+/Her2+: Total of 25, making up 9% of the total. So if you take the aggregate of hormone positive and HER2+ types, that is 14% of the total.
Her2+: Total of 26, making up 9% of total. If you take the hormone positive Her2+ and add it to hormone negative Her2+, these make up 23-24% of the total Her2+ types.
ER-/PR-/Her2-: Total 22, making up almost 8% of totalThe above proportions seem to reflect what I've read in terms of breakdowns of BC by type. So, this suggested that I'm looking at a microcosm of the general population here...leading to what I really wanted to get at:
ER+/PR+: Of all Stage IV's, 36% were diagnosed denovo and 64% progressed from earlier stages (and these earlier stages were all over the map, but with more of a concentration in stages 2 and 3).
ER+/PR-: Of all Stage IV's, 33% were diagnosed de novo, and 67% progressed from earlier stages (so similar to the above hormone positive profile)
ER+/PR-/Her2+: Of all Stage IV's, 57% were diagnosed de novo, and 43% progressed from earlier stages
ER+/PR+/Her2+: Of all Stage IV's, 64% were diagnosed de novo, and 36% progressed from earlier stages
HER2+: Of all stage IV's, 35% were diagnosed de novo, 65% progressed from earlier stages
ER-/PR-/Her2-: Of all stage IV triple negatives, 14% were diagnosed de novo, 86% progressed from earlier stages (which were all over the map with respect to stages, with only DCIS not showing up at all)
There are some striking conclusions that we could make based on the above information about the various subtypes, understanding of course that this is not an official marketing research study. It hasn't been evaluated on the basis of a ton of variables.
With respect to Triple Positive and to a lesser but still noticeable extent Dual Positive, we can see that these guys move very fast early on and therefore many are caught at stage IV. But treatment is rather effective if caught prior to stage 4.With the hormone positive one, many are caught earlier because hormone positive cancers can be slower growing, but they are still aggressive and many from earlier stages progress over a longer haul. With triple negative, people progressed equally from Stages 1 - 3 (7 from Stage 1, 6 from STage 2, 5 from Stage 3).
Anyhow, just thought you'd be interested.
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Moodyblues,
My husband tells me I should stop Googling stuff because it only upsets me. But it really doesn't upset me because knowledge is power. I know how to sift through the bogus information. I know what sites are legit. If I hadn't done my research, I would have been shocked when the M.O. told me I would need chemo. I want to know everything: the good, the bad and the ugly.
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Hapb, do a lot of women quit the AI's due to side effects such as pain, stiffness, bone density loss, etc?
My last step for this will be to take a peek at our subtype (I'm actually really more ER+,Her2 +) group and look at those ladies. I can tell you whether or not they finished treatment. But for now, I better go to bed - first day back for the kids! for some reason I am completely itchy all over - good grief
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Posey girl,
Lots of women do abandon the AIs because of joint pain, stiffness, vaginal dryness, and various other side effects, such as moodiness and depression.
I'm on Aromasin, which has produced moodiness (gone due to Celexa), and osteoporosis (treated with Fosamax). But, I've been otherwise lucky -- no debilitating joint pain or stiffness.
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posey - the non-compliance rate for the full 5 years, or beyond in some cases, is anywhere from 20-50%, dependent on the source
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I have the stiffness, vaginal dryness, and I am not sure if my heightened anxiety is related to it. Warm flashes too (right now as I write this
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hap - keep in mind that not everyone experiences side effects, but those that do will post about them more often. I have had a few issues during the six year I have been on aromatase inhibitors (both Femara and Arimidex), they have not been severe enough to make me stop taking them.
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Hap, I think we have to recognize that how we deal with medical problems varies from person to person. For me, knowledge is power so doing my own research is therapeutic; for others, not so much. Humor is also my friend in tough times, so I laugh at myself a lot, especially when I catch myself being OCD about things like side effects.
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Regarding the chart from Susan Komen foundation. A few years ago I red during one of those Octobers that comparison of bc occurences between industrialized and developing countries is not just because developing countries have much younger population and lower life expectancy meanwhile bc occurs in average to women in their 60-ies. Women in developing countries simply do not live that long. However they have mentioned that the statistics in for example China show that women in wealthier strata, who have improved quality of life and therefore live longer, start showing the same incidence statistics as women in Europe and US.
Recently I red that Japanese women who moved to Hawaii have the same risk to develop breast cancer after 10 years. This was probably attributed to industrial world lifestyle.
Cherry
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ElaineTherese, I know I am obsessing over it but what was your Ki67? Did you ask your onc how long time they think it was there and how long time it took for it to grow? You stated that your tumor was 5 cm, was it only IDC or IDC+DCIS? you had neoadjuvant tretment and htey therefore could see how the cells are responding, when they do surgery first and then chemo there is no way to see whether the chemo works or not. You also get Perjeta when you are doing neoadjuvant treatment. Well I will see my onc tomorrow, hope she has time to answer my questions.
My nails start turning red from the nail bed, and hair is shedding. Now I feel that I am loosing my normal look, it was not so important to me before but now I feel I should probably considered doing cold caps.
Cherry
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PoseyGirl, these are very interesting results, looking forward to more of those. Of what I see those with ER+Her2+ progressed less from early stages than those with other subtypes.
I have found some other research, you probably all have seen it anyway and it is not about progression but it shows survival for different subtypes. According to it TP chart showed survival statistics right under ER/PR+Her2-.
https://www.hindawi.com/journals/jce/2014/469251/
I know we all are looking for something that will give us some peace of mind, the results that look good for our particular type.
Cherry
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Cherry,
My reports never listed the Ki67, and my oncologist doesn't think much of Ki67 as an indicator. My tumor was IDC, and it even had a little satellite tumor nearby! Yes, we were able to watch chemo work. We did an MRI and PET scan before chemo and an MRI and PET scan after chemo. The latter two scans showed that the active cancer was gone. I should also note that the lump itself shrank to the point where it was no longer palpable.
There was some surprise at how well the chemo worked because I'm 95%ER+/95%PR+. Apparently, chemo might not work as well for those with a high number of estrogen receptors. But, I was definitely Grade 3 and chemo does attack fast-growing cells.
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Danna. When I research, I only go to Breastcancer.org, Susan Komen and now, the new link that Specialk just put out there. I will go to other reputable sites/organizations that I 'know' are on the top of their game. Googling for me is the roll of the dice and there is so much unreliable information out there. I asked all who love me to do the same as a lot of info is outdated or gives the worst case scenario.
I love how so many ladies here can point out data with the research behind it to back it, it saves me a lot of time.
Feeling better today ladies! Posey, you're right, getting out makes you feel better!
Melanie
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@ Vicky,
We are a lot alike. I have not held my tongue towards ignorant people since I was diagnosed with cancer. If they can not accept the truth/ or not act / say stupid things then they deserve to hear what I tell them! LOL Not sure if I posted it on this thread about my Therapist that I "fired". She made a remark that I was "Obese" ( BTW I am about 150 and am 5'5") I was floored for many reasons. the first one is obviously what sort of professional says that stuff, 2nd I am not obese, maybe a little heavy for my size according to those stupid charts they have. 3rd cuz she was about 5' and weighed at least 290. So really....... I actually told her to look in the damn mirror and left the room.
another time a lady actually told her child that I have cancer and am contagious. She actually believed that. So of course when I was leaving I gave the lady a hug and kissed her cheek and told her she better get her ass to the dr!
One thing that always gets me is the remark " you don't look like you have cancer!" So a question to you ladies. What does a cancer patient look like. Am I not supposed to get up every day and put make-up on? Am I supposed to look like crap????
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