TRIPLE POSITIVE GROUP
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Taco1946, I live in Sweden, I will meet a teraupeut today and will ask her about support group, of all other professionals I am meeting at the clinic I feel that she is the one who should know
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Hi Hapb, I'm sorry that I don't know much about hair growth on an AI. I'm on an AI and haven't lost one hair (started it two months ago). I've heard to things some people take to stimulate hair growth. My hair started coming back quickly after chemo, so I think it's individual.
Danna, I saw your questions and that you got a ton of answers which is so great, so I won't add much
. I had a port put in and I found the insertion of it to not be a huge deal. But mine eroded through my skin early on (NOT common) and taking it out was not pleasant! SpecialK, I saw your comment a couple pages back about being careful where you look online at stats. I have posted this query on the stage 3'ers page as many here are stage 2a or less. But I guess what gets me sometimes is that the difference between one poster on here or a medical article/study or oncologists can differ so much re: stats. I will see reference to the fact that almost all stage 3'ers relapse!!! That's really great to read. And then I'll read something more in the realm of 40% - 50% relapse. But then quite a few posters here and a few oncologists I've heard of suggest it's more like 25% - 30% and less if you got complete response (which is up for debate in the triple positive realm, i.e. prognosis difference based on pCR). I know stats will not make any difference to me personally, but it sure helps the effort toward optimism if I have some sort of a better idea about all this....anything that you've found to be most credible or 'conclusive'?
Sorry to be a bummer to any others reading this, but it seems to be my biggest struggle as I depart treatment.
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hap - hair does grow on an AI because the majority of ER+ patients who have had chemo start these drugs shortly after finishing chemo and/or rads, before their hair has come back. I finished chemo in June of 2011, started letrozole in July. Both Herceptin and AI drugs can slow hair growth or cause thinning, and I am wondering if Herceptin is affecting yours because permanent alopecia from Taxol is pretty rare. My avatar picture was taken in April of 2013, so I had been off Herceptin for about a year and had been on AIs for just short of two years at that point, but I am one who had a slower comeback of hair initially. I had chemo at the same time as Lago, whose hair timeline I posted a couple of pages ago. Her hair definitely came in faster than mine did. It took about 6 months to have enough hair to stop wearing a wig, but then it did resume growing at a normal rate from that point on.
posey - have you used the PREDICT 2.0 calculator? I like it better than cancermath because it takes treatment with Herceptin into consideration. It predicts OS rather than DFS, but I assume your concern is more about survival rather than a recurrence in the breast. Your oncologist may have access to Adjuvent online, which is another prediction tool available to physicians, but I understand it is undergoing an update so may not be able to access it. I have never discussed recurrence rates with my MO, so have no personal info to share - I am closer to your stage, if I had one more positive node I would have been IIIA as well.
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Hi SpecialK, I am doing the same thing to myself and reading on statistics for my stage.
I have found this article and it says that distant recurrence occurs in as many as 20% of patients. It initially was about the Dana Farber study for Her2 positive early stage but revises even the results of other studies.
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Thanks, SpecialK...I have used this tool, I think.
I don't ultimately know how many nodes I had positive as I did neoadjuvant chemo. I know there were 2 but there could have been several more?? May I ask what 2nd, 3rd generation chemo is? I had 4 x AC plus 4 x Taxol prior to surgery.
I wish the tool would take into effect pcr. That would be helpful. Thanks...definitely a downswing in years 5-10. Not inspiring at all...
Just did the LifeMath calculator which takes into effect all the things Predict 2.0 does, plus histological type and type of hormonal treatment (but still not pcr). Very different long term percentages. Is Predict 2.0 from the UK? I notice that stats out of the UK are worse than ones out of N.A. and am not sure why...I would presume they have similar outcomes as we do over here??
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posey - you had 3rd gen chemo - it usually refers to newer regimens, combo regimens, and that contain a taxane. One thing to consider is what is driving recurrence - is it the Her2+ aspect or the hormonal aspect? Most recurrences that are driven by the Her2+ piece occur relatively quickly - usually inside the two-year point and risk for that declines as time goes on, hormonally driven recurrence usually happens later, although that risk usually declines over time as well, but never completely. Something to consider is whether or not the model used for the tool took longer tern anti-hormonals into consideration. You may want to consider the BCI test at year 5 to help determine whether there is benefit to staying on anti-hormonals to help protect you against recurrence after that 5 year point.
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Thanks, SpecialK - good insights.
Predict is a UK developed model from UK datasets. Here is an article that talks about UK's lagging bc surivival stats in the world. So I think a woman receiving treatment in North America is likely better off looking at tools developed in her part of the world. As for the second or third generation, interestingly, my regimen shows up in 2nd generation (the drop down details them in LifeMath). But I may not have reviewed the drop down as carefully as I should.
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posey - I was aware that PREDICT is a UK site, but it is currently the only one that has decent Her2+ consideration built in. I am hopeful that when they re-tool Adjuvent Online for oncologists it will have updated current treatment included in its risk assessment.
Here is a quote from Dr. Eric Winer at Dana Farber about AC-T. I find cancermath's designations of chemo regimens a bit confusing, and none of them have any option of adding targeted therapy:
"In terms of chemotherapy, in the absence of a contraindication, I would favor a third-generation regimen containing an anthracycline and a taxane. There are many such regimens including dose-dense AC followed by paclitaxel, AC followed by weekly paclitaxel, TAC, or fluorouracil, epirubicin, and cyclophosamide followed by docetaxel (FEC DOC). I personally would favor dose-dense AC followed by paclitaxel because it is the regimen that I am most comfortable with, but any of these regimens are reasonable."
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Getting 5th of 6, TCHP today. It's also our 28th Anniversary and I'm feeling pretty good today. Tne last 3 weeks were awful for me with SE. We had 2 family birthdays, the start of my daughters senior HS year and painting her Parking spot, 100 ' temps, moving my middle daughter from 1 apt to another , and my mother in law staying with us to help with everything. I was exhausted. I She was wonderful, constantly cleaning but I was relieved when my husband took her to the airport yesterday. But she was flying to corpus Christie and they cancelled the flight so she Is back with us and my father in law and their 2 dogs are driving up to stay with us until Monday. Until hopefully the hurricane is passed. At least I have the steroids to help me feel good!
I told my husband that I can lay around and feel sorry for myself these next 3 weeks, one of my feet is 3/4 numb right now from the chemo so the dr lowered the C level they said. Next chemo in 3 weeks and this part is done. Back to the breast dr to see if it worked and then some type of surgery. They had told me that I would have H & P every 3 weeks for 13 weeks but since my diarrhea is so bad they will remove the P so im great full to hear that. I said that after the next chemo no laying around and I'll be up and running even if I have to force myself I'm getting the Wii out to exercise! I found that I can walk down stairs but definitely not up! My legs just ache!
Hope everyone has a fantastic weekend, I know we'll all be glued to the weather channel
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Good luck, LTWJ!!! Hope your side effects are manageable this round.
Hope you don't see much flooding in your area. (My nephew is in Houston; unclear what he's doing.)
Your MIL sounds like a big help; I'm like you, though. I'm a private person, and prefer it to be just the nuclear family at home.
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Cherry - I think the 20% recurrence in the study as for untreated sub-1cm tumors.
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it is beautiful in Boston today. I have decided I need more exercise and am attempting to resurrect my bike that I have not ridden in 15 years. Steve the bike guy has said she can be brought back to life. Yippee!
Started lexapro yesterday after both effexor and celexa failed me. It is making me so...sleepy. hope it stops doing that because it is the only option I have left. Hugs to all!
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Lita19001, I keep looking for any other trial that resembles Genetech sponsored Dana Farber for early stage Her2 positive and cannot find anything. Everything I has very high recurrence risk and I am having nervous breakdown once a day because I just think what can I do to improve my chances? If anyone has any other links that show any better statistics please let me know.
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Tres,
When are you taking your lexapro? Can you take it at night before you go to bed?
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Tres,
are you taking the lexapro for depression or for something else? thanks
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Cherry - here's an article about breast cancer recurrence that breaks results down by hormone and HER2 expression:
http://www.medscape.com/viewarticle/859934 (Well, rats. Clicking on the link works on my desktop but not on my Ipad.)
The table is illustrative of the fact that Triple Positives do really well, even compared to HER2 negative breast cancers.
HER2+ stats can be really scary because the studies often lump all the subtypes together. Triple Positive cancers are often shown to have a better prognosis than other HER2+ types, as in this study. It's hard sometimes to tweak that out of study results but more recent studies seem to be focusing on the differences among breast cancers and how that impacts outcomes.
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Lita19901, thank you I cannot register though it does not accept my account, the page requires log-in. I have also been looking at some studies showing the advantages of being +++ but they all show different figures and it seems the recurrence stats is still high. I know worrying is pointless but cannot help it, it just sucks Cherry
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Hi Cherry,you are stage 1A which is VERY early. You have a very very good prognosis. I'm not a doctor and I realize we can't predict cancer, but I'm pretty sure you have at least a 90-95% long term survival outcome. If I'm off, it's not by much. So please feel comforted in that. I've combed the internet since being diagnosed (to my detriment as you can see) and I feel pretty confident in stating the above...trust me in the sense that I've consumed a lot of literature. Stats will vary and some sources make things look really awful. But I know it's not an awful outlook for you. Remotely. As said, there is always that question mark, but I hope you can relax a bit.
SpecialK, yes, I figured you knew the UK piece. But LifeMath also includes a Her2 component - it asked me whether I was positive or not...do you think that it doesn't do much with that info? I felt the LifeMath 'questionnaire' to be more in depth than the Predict tool. I agree it would be nice to have some more in depth and up to date tools. I'm sure those are in the making. The stats I've seen out of the UK seem about 10% lower than what you see in North America. The results of that tool came up with something in the range of 15-20% less than the LifeMath result. I felt the LifeMath one was more 'generous' than I expected too. I expect the truth/fact is somewhere in between. Time to put this aside and eat a huge piece of cake, drink a huge glass of wine - you know, all the things I'm not supposed to do.
Oh, and I've seen reference on here to some questions around a more plant based diet? I'm curious what that's about? I personally will not ditch meat, but I'm reducing it by at least half and changing what type I eat. I'm in the process of radically changing things (I already started a bit before, so it's baby steps and nothing ridiculously shocking to take on).
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posey - lifemath factors in the risk from Her2+ but not the benefit of treatment. That is the difference between that calculator and the one PREDICT uses. As far as the plant based diet - I use that proportionately on my plate with the majority of the plate filled with plants, and 25% with lean, clean protein - I am not ditching meat either, just being more picky about where it came from. I try to limit to organic, no antibiotics, pasture or grass fed, wild caught, or free range animal products - since ultimately we are eating what they were eating, lol!.
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Cherry - Try googling "Study Refines the Risk for Breast Cancer Recurrence" and see if that does the trick.
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You know what's so bizarre??? I just did the LifeMath calculator again and it spat out a totally different (much worse) figure for 15 years! I had done it twice before, so I think there was a glitch at the time I did it earlier today. Oh, isn't that nice. Super.
Thanks for mentioning the difference between the two tools. I haven't really used either and tried to stay away because I know that we can't each be completely reduced to a specific stat - and it's scary. But there I've done it!
I am trying to follow your thinking on the meat. Changed over to local, hormone free, grass fed meat with less emphasis on red meat. I basically will focus mostly on chicken and the right kind of fish, but allow small portions of red meat maybe 2x per week (or once).
All I can say is let's hope there are some good drugs on their way over the next few years that can be added to the arsenal.
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Hap - the 85% is the same as the Predict 10 year stat for women our age/stage who are undergoing all prescribed treatment. Women Cherry's age/stage undergoing all treatments have a significantly higher rate using the Predict tool.
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Hap - I ws assuming PR positivity in the ER+/HER2+group.
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hey guys...yes I am taking it for depression. I've been having a bit of a hard time since treatment ended. I am thinking about switching it to night time and move the tamoxifen to morning....
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Hap, again! I worry about metastasis but I would also be devastated if two years from now a mammogram picks up another tumor, the idea of going through just this again.So stats that show a diminishing risk of recurrence cheer me up!
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Tres,
Yes, definitely switch the timing of your meds. I wish Celexa made me sleepy, but it doesn't. In fact, I've suffered from chronic insomnia for over 15 years. I'm on extended release Ambien for that now. It's better than tossing and turning for hours.
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celexa made me mentally feel great, but I was having irregular heart rhythms and could not sleep! Effexor made me feel like i was having a manic episode. Two pills in I threw them out. I am Switching timing today...tamoxifen in the am and lexapro at night...
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Has anyone here done the BluePrint genomic testing for subtyping?
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fleur - I think Blue Print is part of the package if you do Mammaprint testing - are you wanting to do just the Blueprint to determine whether you are Her2+ (ERBB@) or Luminal B?
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Hi PoseyGirl, I suspect it will be a long and boring rant written in bad English, I am sorry. I also do apologize if it looks like I am coming in into discussion as soon as you discuss some topic with others but this is just a coincidence, it seems I am worrying about the same things and have some similar background. Yesterday was not a good day in this regard, I spent the half of it looking for statistics since I can no longer read any blogs because when they end bad I become so sad that it is like the hope leaves me and I get so sorry for those women and everything seems like it is all useless, and this is it. The feeling itself is indescribable and you here are the only people I know who I do not need to explain it for. Now, what I can say in my defense, if I can put it so, is that I am new to this diagnosis and have not been experiencing any really happy feeling since I got it, the life I had before it has so to speak ended, and I know one has to find her new normal and so far I am not doing very good in this regard, but as I said I am new to this. My search of the internet is not that systemized and I know I have just started but I am looking at the aggressive cancer statistics and it cannot simply look good and it makes me sad, just sad and I am having breakdowns, in average at least once a day. The doctor I met right after my diagnosis, our local but internationally acknowledged frontal figure when it comes to bc, a bc sugeon and specialist, a member of all possible boards and a strategic consultant when it comes to the process of directive discussions, she told me when I was sent to her right after my biopsy: people are in shock right after the diagnosis but after a couple of days when the chock submits they can return to work and start treatment, you will not feel this way all the time. I do not know if the lady has iron nerves when it comes to emotions or it is simply easy for her to say that because she is not in my shoes, or instead has seen so many in my shoes, but so far after more than two months I have not landed in it and I think I speak for many who would say the same thing. I am not feeling well mentally and sometimes I am sitting there trying to work and I caught myself thinking I am fine, what deadly disease, I am feeling fine at least at this very moment, it cannot be happening what they are saying, and sometimes I just realize this is cancer, this is horror, it happened to me and compared to other healthy or at least cancer-free people out there my life has not the same outcome anymore, it is not worth that much longer, not in terms of long term life statistics. I believe I have already mentioned it but according to our Swedish statistics bc is the second cause of death for women in age-group 40-49, women in this age simply do not die of other causes that much than because of bc and how common is bc in this age, one in 60 women? And how many of those who gets bc relapses and dies of it and it is still the second cause of death for this age-group. This means that all reasoning about that we all are mortal and do not know what will happen tomorrow is not exactly this eligible for me, in terms of survival I am more mortal than those without bc are and it makes me sad and scared. And when it comes to bc, it is unpredictable even if we are looking at trials and statistics based on those all the time. People with large tumors survive and leave long lives meanwhile people with no nodes involvement get recurrence and no one knows who those people will be. This is what makes me hyperventilating, we do not know, this is what you get from the oncologist and you realize this guy is your only hope and the hope is all we get, he cannot promise you more than that but he does mention that it goes well for the most of people. As you mentioned, well for the most of people does not help if you will not be one of those. These new conditions, I have not get used to them yet, and I am trying to get the knowledge of the statistical outcome and sometimes it calms me down but sometimes it does not. And even if everybody is looking for some positive features in their diagnosis (still cannot understand how it could be seen positive, but my surgeon told me to see it this way) I cannot say that I am feeling better that it is smaller than someone else's, because it is individual. Besides if it were up to me I have chosen to obliterate this disease once and for all, anyone would do the same thing. After all 95% survival statistics means tragedy for those 5% who did not make it and I cannot even imagine the extent of the tragedy, I get a breakdown, I get it so often now that I have to stop but it comes and goes. I search and search for info and it does not give me any comfort but I feel uncomfortable of not doing it either. I know you of all people know what I mean.
Now we have also told our youngest daughter today after we had a meeting with a clinic councellour yesterday. We did just as the councellour said and told her everything except of the actual c-word and I saw that she did not connected it on her own. Now I know we will have to tell her even that eventually but I felt that it was enough for today. She is my biggest concern and I hate the fact that her childhood will be affected by this but as the councellor lady said: I know you do not want her life to be affected, but the fact is it already is, does not matter whether you want it or not, and it is better you will tell her yourselves so she will not keep wondering and being sad on her own. As I red on some blog of a mom who had bc, she decided to put up some rules at home and one of those was: no one will have to feel sad alone, it has to be shared with everybody in the family.
I wrote a lot, I do not know if anyone can read it to the end and I understand them. I wish I were one of those people the famous BS I met told me about when she mentioned that they will be shocked for a couple of days and then will go on with their lives, apparently I am not, but she neither is one of us, and I do not know where from the wisdom about the couple of days is coming.
Finely, thank you to all of you who takes time and reads my questions and replies both with encouraging reassuring words and scientific/statistical links, my appreciation is beyond words. Like our earlier discussion about postpartum bc for example, it was very important to me, I have been thinking about it since I saw somewhere that it was one of the risk factors. For some reason you read about the statistics but you try it on your own situation, knowing there are people out there who are going trough the same thing is crucially important. Ok, end of my rant, I apologize, Cherry
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