TRIPLE POSITIVE GROUP

ArleneA

Last Sunday, I did the Donna Breast Cancer half marathon (Donna is a 3-time breast cancer survivor Triple Negative) and has worked very hard to raise funds for research and a Vaccine for breast cancer.  She works in conjunction with Mayo in Jacksonville.  As I was running, I came across Team Genentech - they got a big high five from me. 

Nice to see organizations out there doing something to as Donna's theme says "Finish Breast Cancer".

Anonymous

Wow, I cant believe this thread has gone for two full days with no updates! That must be a record. I had my interview with one of the new oncologists today. I liked him a lot. Seemed smart, very nice, very current on programs.

Blownaway...this might make you feel better. He has a patient who went from stage 1 to stage IV (before herceptin). Liver mets in 1998. She was progressing on chemo, so they got her into the herceptin trial. She will receive herceptin the rest of her life, but she has zero evidence of mets. He thinks it is a godsend drug.

I asked him about using herceptin as booster shots kind of every so often. He said there is merit to the thought, but the money it would take to finance that study over the amount of time it would take, given the price of herceptin would probably not be realistic at this point.

He also noted that based on my stats and treatment, I had a less than ten percent chance of distant recurrence, and even smaller chance of recurrence in the breast area. I gave him my speech about odds. That he can spout all the percentages he wants but at the end of the day, I either have 0 recurrence or 100 percent recurrence. There is no inbetween. He took my hands at the end of the appointment that he talked with me for an hour and said...seriously don't worry about it.

Still easier said than done, but I am trying.

knmtwins

Fluff - LOVE IT "0 recurrence or 100 recurrence" Yep, that is how I feel too. In the beginning, I'd say 10 years, I have a 7 year old, 10 years isn't enough. BTW where are the calculators for us HER2 gals??? I guess since Herceptin and especially Perjetta are so new, they just aren't out there.

emily_the_cat

My doctor estimated the following odds for my particular case (under 35,experimental chemotherapy) although she said it was a "big guess": approximately 15-20% chance of distant metastatic recurrence in the next 10 years without any hormonal therapy, reduced to 10-12% with tamoxifen alone, reduced to 7-10% with AI/OFS. I have to say, it did comfort me to have actual numbers to consider, even though I know that they are very approximate. This, even though my chance of having gotten breast cancer in the first place was 0.44% - and I got it, 100%.

Mommato3

Emily, so you only received Herceptin and Perjeta, no chemo? Do you mind me asking if you had any tumor left when you had your mastectomy? My MO gave me a figure of 10-15% but she thought it was probably closer to 10%. There just isn't any long term data on Perjeta.

emily_the_cat

I'm actually receiving Kadcyla (T-DM1) and Perjeta, six cycles neoadjuvant and twelve cycles adjuvant. Kadcyla is a antibody drug conjugatethat combines Herceptin with a cytotoxic agent; it's currently only approved for the metastatic setting but I'm in a clinical trial for early stage patients. My tumor shrunk from about 4cm to 7.5mm at the time of my mastectomy; my MO said that she didn't expect me to be pCR because of my ER/PR+. It is frustrating that there's so little data available for us HER2+ ladies, but on the plus side, there are all these cool new drugs for us!

My odds of recurrence are higher than most because of my age (35 years). It's a bummer, but what are you gonna do?

windgirl

hi, have a nail question for your tchp ladies. The top half of my nails had lifted due to chemo but they never fell off. I was imagining that as the nail grows it will grow attached to the nail bed. It is growing at a regular pace I think but the top half is still lifted. Did you have a similar experience? If so, how how long did it take for it to reattach itself? Thanks

Moonflwr912

Windgirl, Lago had lifted nails. I'm sure she'll be here soon. But the lifted parts will never reattach. There will be a hard layer under it though, usually. It takes 6 months to grow from the bottom to the top. So you have 3 months before the nails aren't lifted. I eleven they cut them as close as hey can so they don't catch on things. Hugs.

CassieCat

I'm still watching two lift, and I don't believe they'll reattach. One doesn't hurt so much now, but one is really painful. I think it's a just a waiting game, as they grow out. All of my nails are looking discolored, but so far only two have become painful and started to lift. I'm hoping the other 8 will just grow out before anything else happens!

SpecialK

knm - the PREDICT survival model includes Herceptin but not Perjeta, here is the link.  It is a British site so enter your tumor size in mm, not cm.

http://www.predict.nhs.uk/technical.html

windgirl - I had one nail lift, and continue lifting as it grew out.  I had to have the entire nail removed by the dermatologist.  It took about 6 months to grow to the end of my finger.

windgirl

Thanks. SpecialK - ouch! Hope I don't have to do that

chrissie29

Windgirl-I had many lift with one getting infected so I cut it down as far as I could to promote healing.  My last TCHP was 11/14 and my nails are all grown out now-even the one I cut down to the cuticle.

lago

emily_the_cat I was 49 at diagnosis. My MO said 14% chance of recurrence if I do all the treatment. It goes up to almost 30% if I don't do hormone therapy! 49 is considered young but not as young as you.

windgirl a & cassiecatI took a long time. I think after a year I finally stopped wearing nail polish to hide them. My nails never fully recovered (including toe nails) but I had a really bad case. It takes a while. You might want to see a dermatologist. I did. She gave me something that softened the nail. I found it helped them flatten out a bit. After chemo ended my nails got much worse before the got better. This SE really sucked for me. I even had to have one toenail removed.

windgirl

Thanks for the info Lago. Luckily I don't have any shape changes (yet) but 7 of my nails have the top part of them detached (some more than half). I will go see a dermatologist as soon as my crazy work schedule and rads ends, I will let you all know if he recommends anything else.

SpecialK

windgirl - also be careful because moisture tends to get stuck under the lifted part.  Particularly if you have any oozing from under the nail, you need to be concerned with both bacterial infection and fungal infection due to the moist environment.  I had both and the derm did give me prescriptions for Ciclopirox and for Xolegel.  You may want to consider soaking hands and/or feet in diluted bleach/water. 

Jumpship

SpecialK-Can you help me with Predict UK graph? For chemo it has "none", second and third. This is my first (and hopefully only) round of chemo. What would I put in? Also it seems that less than 2% improvement of survival with Herceptin, but I thought Herceptin was the key for us triple positive people.

Can you tell that I have completed 5 of 6 rounds of chemo and am just spent?

SpecialK

mini - you received a 3rd gen chemo, it is not a case of how many times, but which type.  I can't speak to the small percentage that PREDICT is showing for the benefit of Herceptin.  When I put my numbers in I get a larger percentage than you are describing, but I am probably older than you and had a 26mm mass and positive nodes.  If you look at the graphs you will see nothing, only hormone, hormone + chemo, and hormone+chemo+Herceptin - look at the 5 and 10 year benefit of the combination of all three things vs nothing - that is the important number, not Herceptin alone.  Keep in mind that since virtually nobody does Herceptin without chemo it is problematic to isolate the benefit of the drug by itself.  The benefit of hormonal therapy for us is also very important, on my graph it carries almost equal weight to chemo.

Mommato3

Maybe my idea of high risk of recurrence is different than others. I don't think 7-10% is that high. Now 20-30% is high. This Predict graph shows my chance of being alive in five and ten years. Not my risk of recurrence. I could have a recurrence and still be alive in ten years. I'm the same as Special on the graph. My hormone therapy and chemo/Herceptin carry almost the same weight. I've been told by three different MOs that hormone therapy is just as important as chemo.

rleepac

How do I know if I'm getting 1st, 2nd, or 3rd gen drugs? I'm getting AC x 4 followed by Taxol x 12 with Herceptin & Perjeta (although I'm still a little confused about the frequency of the Herceptin & Perjeta). SpecialK? Anyone else know what generation these fall into?

windgirl

Thanks SpecialK I will keep in mind

SpecialK

rleepac - you are getting 3rd gen with that combo.  You should get the four dose dense AC, which is Adriamycin/Cytoxan every two weeks, followed by the taxane (Taxol), Herceptin/Perjeta which looks like weekly if they are doing 12.  I am not sure if they will dose the Perjeta weekly - there may be some others who have done this combo to advise you since Perjeta is more often given with Taxotere/Carboplatin/Herceptin.  Once you are done with the Taxol they may continue the Herceptin weekly for the remainder of the year, or switch you to an every three week dosing schedule.

ElaineTherese

Rleepac -- If you're doing the regimen I did, I did Taxol + Herceptin X 12, and Perjeta X 4 (every three weeks during the Taxol + Herceptin infusions). Now that I'm past surgery, I'm doing Herceptin every three weeks + hormonal therapy (Aromasin).

SpecialK

rleepac - what elainetherese said, lol!  She gave you the condensed version of what I was trying to say above!

rleepac

Ok - 3rd gen. Got it - thanks!

Elaine and SpecialK - yes! That sounds like what I'm doing. AC every other week x 8 weeks (4 rounds) followed by weekly Taxol + Herceptin x 12 weeks and then Herceptin will continue every 3 weeks to complete a full year of Herceptin. I just wasn't clear on how often the Perjeta would be given. I'll ask next week at my first chemo. But what Elaine said sounds about like what the MO described.

I don't know yet if I'll be doing Tamoxifen or an AI. I'm pre-menopausal right now but will probably have an oophrectomy with my BMX so I might go straight to an AI. That hasn't been decided yet.

rleepac

So, if I look at the Predict UK tool, it says at 10 years, I have 73.3% survival with no adjuvant treatment, 7.1% additional with hormonal therapy, 9% additional for chemo, and only 1% additional for Herceptin - so 90.4% survival at 10 years. I'll take it! Although it doesn't address recurrence - only survival but still, I think those numbers are pretty darn good. It also doesn't address neoadjuvant therapies but I don't know if there is much difference in survival.

Now, when I go to Adjuvantonline.com, my predictions are not quite as good but I don't think it counts Herceptin. I get 85.5% at 10 years. Still pretty good I suppose. The Adjuvantonline is giving me a 21% chance of relapse. I don't really like that but I don't know what else I can do about it so I guess I'll just have to hope I'm in in the 79% that don't have a relapse. I think that's a better way to look at it!

SpecialK

rleepac - some of the older prediction tools, including cancermath, do not include Herceptin data, and definitely don't include Perjeta.  I know that you know, it takes a time to accumulate the data, and while Herceptin is no longer as new, Perjeta has only been approved for early stage since Sept. of '13, so info is still being gathered about its efficacy.

Mommato3

Rleepac, I did four AC treatments followed by weekly Taxol for 12 weeks and Herceptin/Perjeta given every three weeks (during Taxol). Now I get my Herceptin every three weeks.

Adjuvant online doesn't include Herceptin. That's why it was so hard for my MO to give me an accurate stat. I think it also gave me a 21-23% chance of recurrence. I definitely prefer the Predict stats

knmtwins

you are doing both, which the tool doesn't let you do and you are doing Perjeta which isn't on it either. On that tool, A is gen 2 and taxane based, which taxol is, is gen 3 hold the mouse over it and it tells you.

rleepac

I would be happy to be part of the statistics in 10 years that shows Perjeta's efficacy!!! We are making history ladies. It may not feel like it but it's true. As SpecialK pointed out, it takes many years of data before the 'tools' catch up.

formydaughter

I've been wondering the same things Mommato and rleepac. I would like a disease free survival calculator and wonder about the generations of chemo.

Right now it seems that SOFT gives the best breakdown of DFS, but only at 5 yrs and it pretty much ignores HER2. Perhaps compiling results with a Herceptin study at 5 yrs would give us a better idea. My onco thinks I'm 85-90 in the clear with herceptin, Perjeta, BMX and tamoxifen boosted by switching to OS + AI, but he says that's his guess - no calculator. Perhaps we don't yet have a DFS calculator is that they don't yet have 10 yrs of data with the new treatments