TRIPLE POSITIVE GROUP
Comments
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Thanks for your reply, Cypher! I read the article you included - I am definitely getting H as part of my chemo regiment. The patients in that study also received A as well though. If I did ACTH, the A and H would be given separately - AC, then TH.
I just learned about cold caps tonight. I'm interested in it and will check with the center to see if I can do it. I'm planning to go to MSK (Memorial Sloan-Kettering) and I read in the forums that they wouldn't let someone who had Lymphoma do it so we'll see what they say for me. I'm supposed to start treatment this Tuesday so I'm not sure if I can get them quickly enough. Would it be okay if I started after the first chemo treatment? (What does PITA stand for?)
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Flyjune,
Hello . I'm here on the east coast and I had neoadjuvant TCH chemo. T being Taxol. PITA=
pain in the a..
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flyjune, these ladies have all given you great info. There is not much I can add other than I had DCIS and IDC with positive nodes (stage IIb). I had TCH before surgery and had a complete response to the chemo. My pathology showed all nodes were clear after surgery. Good luck in you decision.
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flyjune as cypher mentioned I was node negative but still a very large tumor (total 6.5cm but only 5.5cm was invasive, still pretty big). My stage was still IIB and I was premenopausal. As I mentioned my onc gave TCH to my neighbor (triple positive) and another young friend I met at chemo (HER2+ but hormone negative). The only friend that I have treated at the same place (different onc though) started on TC (not HER2+) but had such bad neuropathy after the 1st tx her onc wouldn't let her continue on that even though she begged not to get Adrymicin. But she got through the Adrymicin but didn't have to have Herceptin. Adrymicin did wipe her out though.
Remember this is your body. They gave you choices so you can chose.They MDs can't guarantee anything. But I will say Sloan is one of the tops.
I'm sure if you decided to do cold caps and tell your onc that if they don't let you use the cold caps you're not doing chemo they may have no choice. I chose not to do them. Besides the price and the PITA factor I didn't like the idea that it prevents the chemo from getting there. Seems Carboplatin does cross the blood brain barrier. I would hate to think that chemo couldn't get there. Granted maybe it doesn't need to get there. The brain is usually the last place b reast cancer goes. Not sure if that's accurate but that's my feeling on it.
BTW what kind of design are you studying
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I had AC/TH protocol in Connecticut. I talked to my MO at length and he felt strongly that this combo was more aggressive and more proven than the TCH. This is the best article I found on the subject: Link
A second article here: Link
I also recommend deferring school for a semester.
I did have some of the cardio effects from this protocol. I was pulled off Herceptin for 3 months, but resumed and am being monitored by a cardiologist. All is well right now and I have four more treatments.
I decided to trust my MO and go with his recommendation. My reasononing was this...I just couldn't live with myself if I went against his suggestions and then it didn't work. I don't really think there is a wrong answer here. Make the best decision you possibly can and don't look back!
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Flyjune I'm so happy everyone came on to give u some ideas and support. Let us know how everything goes and don't forget always tell u'r Dr. how u feel.
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Flyjune, I used cold caps too, and for me it was the right decision. The reason I've heard some oncologists (including my own) are not enthusiastic is the possibility of scalp mets. That has been pretty much disproven, although my oncologist says there hasn't been a good enough study for him. He said nothing at all about brain mets. Taxotere carries with it a small risk that the hair will never come back - I've seen 3% to 6%, but I think the risk is less for younger women. But you should be aware of that, and it seems most women are not told of this risk. If you were to go for cold caps, there is no way you could get them and get set up for chemo tomorrow - you would need to postpone treatment for a week or 10 days. You need to use them for every treatment, so starting them after the first treatment would not work. They work well for most women on TCH, but less well (more hair loss although usually not complete loss) with ACTH. I had weekly taxol and Herceptin for early stage BC and the caps worked perfectly for me.
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FlyJune: Welcome! You'll get lots of great information and support here. There are several ladies here who provide lots of information and links which are quite helpful.
I do think TCH (Taxotere, Carboplatin and Herceptin) is what the majority of us +++ girls received. I had surgery first and no node involvement. My SE's occurred 4-5 days after each treatment and while not fun in an means, it is doable. My SE's were minimal compared to many. I didn't deal with the big D or the big C. I think I could have worked but glad I didn't have to.
I used the ElastoGel's versus the Penguin caps and while they didn't work as well as the Penguin's did, they worked and I never went bald and the advantage is that the hair comes back quicker with the caps even if you don't have 100% success. It is a commitment but well was well worth it to me. As Patin stated, you won't have the caps in time so you'd need to delay.
Best wishes!
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Thanks so much for your responses! This is really helpful.
I'm leaning towards TCH because I'd like to avoid the potential cardiac issues, but still feel a bit pulled toward ACTH because it's what the top centers use, there are more studies on it, and it's a more aggressive treatment. I also found out last night that TCH was approved within the last five years so there seems to be less data on it - I've just seen the BIRCG 006 study referenced which was not set up to test the efficacy of ACTH vs. TCH head to head.
I forgot to mention earlier that my oncologist is recommending dose dense ACTH with a neulasta shot the following day. Does anyone know how much more effective dose dense ACTH is / have a link to an article about it? I've googled a bit, but the numbers don't seem to quite add up with other numbers I've seen. Also, when was ACTH approved?
Thanks again for your help during this confusing time!
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Flyjune, your rationale was the one given to me by my oncologist. It continues to amaze me at how little data there is. There are small studies done and those are the ones the experts use to base all of our treatment on. I asked my doc if I was being tracked or monitored in any stats and he said because of HIPPA, patients can not be. So - there are thousands of us being treated but not analyzed. You can always get a second opinion, but that might make you even more confused. Mine said, "You are more than welcome to go for second opinions, however in your case, we know what Sloan or Dana Farber will do because their protocols are known."
The truth is, sadly, there is not one answer. I found this to be infuriating when I first started out because I wanted an answer. I wanted someone to tell me how to make this go away and never come back. Unfortunately, each of us can only share our individual experiences. When I made my decision, the cancer was scarier than the cardiotoxicity. I pray I made the right choice!
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flyjune, I was given ACTH and before I started that regimen, discussed my cardiac concerns with my MO. Because my cancer is recurrent and involves the nodes, she convinced me that I needed the more aggressive treatment. The problem with side effect is that they are just a crap shoot. We are all so different. I developed a blood clot in my left leg from the taxol treatments and still have to take medication for that, but most people do not get that side effect.
I know your decision is trying for you and I do wish you the best. So sorry that you have to deal with this disease at such a young age. I do agree with the others that you will be very tired and weak from chemo. It just wipes you out, particularly Adriamycin. You most likely will have to postpone your studies for now.
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Fly..I'm getting chemo first and started AC first then TH...and have other cancers happen like leukemiaonly hold a slight risk....I took more aggressive due to me being 32 and it recurring in my bones or elsewhere....I'm going on last treatment of a/c Aug. 7...I tolerated good and my tumor has shrunk well and I'm hoping for complete response. Sorry to hear of your cancer
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I went in for Herceptin and was turned away because of the echo. I'm seeing the Cardio tomorrow. My TCH stopped June 10 and this was the 2nd dose of Herceptin alone. Will be on a break for 5 weeks. Doing another echo in 4 weeks and then we'll see. Very disappointed. Not sure what's going on. P brain I'm w you. Good news my hair is starting to come in just fuzz but more than it was.
P brain they were asking me how I was feeling. I'm not at 100% but not very tired. After chemo I was feeling very good. How about you. Did you feel any worse? Any side effects ?
Arlene A What do the numbers mean?
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Flyjune, if you’re going to do the cold caps you pretty much need to start at the get go. Definitely check out the cold caps thread – there is a ton of information there. I have heard that it may not be a good idea for lymphoma, but that’s a systemic type of cancer, like leukemia. I don’t think being node positive would make a difference. However, if I had mets I wouldn’t have done it. In terms of the blood brain barrier, there is absolutely NO impact of the cold caps on that. There is perhaps an infinitesimally small increase in your chances of getting scalp mets, but the cold doesn’t reach into your brain!!!
More on the cold caps – yes, some chance your hair loss might be permanent. With the herceptin and tamox, your hair might be thinner or grow in more slowly. I have always had very thick hair. I did the cold caps, lost perhaps 30-40% (which was only perceptible to me and close friends who knew I was going through this). My new hair is growing in more slowly than my hair used to grow. I am very happy that I did the cold caps b/c I would really be stressing out over it otherwise. But I always thought my hair was my best feature, so it’s a bigger deal to me then for a lot of women. I seem to notice on the cold caps thread that a lot of us have long, thick hair, so maybe we’re all kind of hair-vain. (Btw, my eyelashes still haven’t completely grown back.) If you switch to the LA area, you can find help here (in fact you can PM me and I can give you my phone # if it would be helpful.) For me, cold caps meant a) I didn’t have to look in the mirror and feel like a cancer patient (until very late when my eyebrows and lashes were super thin and I had to draw them in….). b) I could go on a hike on a hot day and not have to deal with either a wig or going “commando.” C) I could swim laps without having to “out” myself to my dozens of acquaintances at the pool where I swim (not necessarily friend type acquaintances, just people I see over and over again). d) I could go out with my friends and not feel like I had to check the mirror every 10 minutes to make sure my wig hadn’t moved around. So it really helped me be active and stay relatively upbeat. Also, when you’re done with chemo, you’re done – you don’t have to wait 2 years for your hair to go back to where it was.
Also, in terms of the adriamcyin and herceptin – one other thing is that some women have had to stop, or pause, using herceptin for heart reasons. You might ask whether there is a greater chance of that happening if you use adriamycin v. tc. Herceptin is really important for us her2+ women so if using ac would lead to a greater chance of having an ejection fraction/herceptin problem, that would be another reason to go with TCH. I know adriamycin and herceptin are both hard on your heart but I don’t know if they are hard in the same way.
Neulesta – this is because you will presumably become very neutropenic. Personally, they checked me mid-stream and I was not so neutropenic that I would not recover in time for my next chemo, and that was consistent throughout. Neulesta itself has side effects and apparently causes bone pain, so you might ask if it’s inherently necessary or if you can check to see how your blood counts are.
I was more worried about the cardiac issue than the apparently slight (if any) benefits of adriamycin. However, I was also node negative. My mom had bc at 41 and she never recurred, so for the most part I see myself as not recurring. Interspersed with periods in which I’m freaked out over some random symptom that is probably nothing but could be something horrible. But anyway at that point I was pre-chemo and not onto the post-treatment, hypochondriac phase like I am now.
I do know someone who was on adriamycin (not herceptin, she wasn’t her2+) and didn’t have a lot of problems with it in terms of her energy level. If you can take a reduced class load, that might be doable, but I wouldn’t try a full schedule. It’s just not important enough right now.
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Shasha - join the club. I got sent on my Herceptin Holiday about the same point in my treatment. I had no symptoms. What was your EF? Enjoy your little break from treatment, and read up on everything you can. I learned that the majority of benefit comes from the portion you got with chemo, so please know that you got the good stuff already. Treatment is truly a balance - how much can they give us balanced with how much can our bodies handle. Know that in some countries they only give nine weeks! Six months vs one year studies did not show a huge difference either. I was able to get back on it after three months and have been doing fine ever since. Are you seeing a cardiologist?
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Vballmall
I'm seeing the cardiologist tomorrow. What is EF? I wasn't given any numbers. What should I be asking?
Thx so much.0 -
You want to know your EF, your "Ejection Fraction." Ejection fraction is a measurement of the percentage of blood leaving your heart each time it contracts. Normal range is from 50% to 70%. It is also important to know where you started. It's really a bunch of math. I believe the current guidelines are if you have a >= 16% decline in your EF OR LVEF below institutional limits of normal and 10% absolute decrease in LVEF from pretreatment values you must stop the Herceptin. Link to Herceptin Insert.
So if you start at 70%, 70 x 16% = 11.2%. If your EF is 70 - 11.2 = 58.8% or lower, you should stop.
Second scenario is if your EF decreases more than 10% and is below your institution's normal range.
I hope this helps and isn't too confusing. I would ask when you will be retested and if they are going to put you on any protective meds like a statin drug or ACE inhibitor.
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Vballmom
I just researched a bit. They haven't given me any numbers yet. I'm sure the cardiologist will do that tomorrow. I'm thin104, low blood pressure. Around 100, and my cholesterol is good. So this about the Herceptin. Will see what happens tomorrow. Thx so much for the info.
I'm being retested in 4 weeks and not sure about medication yet.
Thx again
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I know that some people have chosen to go with TCH to avoid cardiac issues. I just spoke with my oncologist and she told me that the risk of cardiac issues is 1% when on the ACTH dose dense regimen where I get AC every 2 weeks instead of 3 weeks. I've read about a good number of people who have experienced heart issues after taking ACTH, but would like to put it in perspective. Can anyone who has taken ACTH and not experienced any heart issues or did experience issues but their heart has repaired/resolved itself, please let me know? I'd love to hear about it. Thanks in advance!
Shasha10 - Normal LVEF is between 55 and I believe 75 (but don't quote me on the higher number). It's also give or take 5% so 50 is still okay.
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I had ACTH= No problems before treatment for cardiac or after so far. I was 43 when diagnosed. When I got done with all treatments I was 45 years old. Never had to take an breaks or quit at all. Did the neulesta shot the day after treatment thank goodness I did, BUT I did have bone pain after the shot for about 3 or 4 days after. IF I had to do it all over again the only thing I would change is the cold caps I was never told that was an option and did not find this site until it was to late
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Shasha, I am not thin (could lose twenty pounds and I'm 5'8") but I have low blood pressure and low cholesterol. For what it's worth, I'm now on Lisinopril which is an ACE inhibitor. There is now a clinical trial to give this with Herceptin to protect the art. Do ask.
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Thanks for your reply, ang7894!
Question about TCH and Herceptin. I've read that it's ideal to have 12-18 treatments of Herceptin with your chemotherapy. I can see that happening with ACTH if you do weekly Taxol, but how does that work with TCH if it's just 6 treatments (or at least, that's what's been recommended to me. Do you guys know anything about this?
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flyjune, if you do TCH, it is usually 6 tx of TCH then 12 more tx of H only. Sometimes people have to stop H for a while if their EF goes to low. Once the EF comes back up you most likely would finish the H tx. I'm sure others will chime in on this too. I think Pbrain is on a Herceptin holiday right now because of her EF number.
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Personally I think your heart can take more when your younger if your a good healthy person...Just like your immune system when your younger. As you age elderly get sick because you are declining heart and immunity that's why elderly get pneumonia a lot or colds etc... that's my opinion....I hardly ever got sick ...maybe once a year and now this.
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I really have no medical issues but hypothyroidism and take synthroid
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OK u gals know I can't really give any ideas on this, but fly they are all in the know so ask u'r Onc. all the things they're taking about- What can I add??? Well the first MUGA I got I was 70 so I thought I was having a heart attack thinking it should be 100. and the Dr. said 70 was good, Well it wasn't good as a grade in school so I just figured it was not so good and mine stayed exactly at 70 with every test. (still thought it should be 100.) just sounds better.
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They are doing a study out there! I met a older lady about 60s or 70s who is going thru chemo now ....Met her at the look good thingy for ACS ....She is her 2 negative but they put her on herceptin for a year..they are doing studies to see if it helps...her daughter and granddaughter was there telling me. She goes to Lehigh Valley Hospital. I should of went there butddidn't feel like waiting 2 days longer for a biospy lol
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Too be honest at that age and with herceptin have effects on the heart I would not want to risk doing a study. Not sure if she had nodes or anything else involved or what stage but found it interesting. Insurance must pay then.
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Goutlaw I doubt the insurance is paying for Herceptin trial. Drug companies try to find other/more uses for their drug so they can extend the patent or exclusivity on it.
So lets say a drug patent is good for 20 years (That's from the filing date which includes the trial period). Herceptin was approved for Metastatic in the late 90's… so they probably have 8-10 years. The patent was then extended once it was approved for early stage in 2006 but the extension was much shorter. linky and linky
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Flyjune, I've heard of one or two women who got Herceptin weekly while getting their actual chemo every third week. (Women who posted on these boards - I could never find it again...). Most everyone just gets Herceptin on their chemo schedule. I had 12 weekly taxol + Herceptin, and now am getting my remaining Herceptin every three weeks. If I'm not mistaken, one of the triple positive ladies (LeeA?) actually got at least one Herceptin before chemo, because the chemo had to be delayed for some reason, and apparently her doc though it was important to get going on Herceptin.
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