TRIPLE POSITIVE GROUP
Comments
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I have some great news to share. I got my MammPrint results.
I came back high risk at 29% for recurrence if untreated.
If treated with chemo and hormonal therapy, my freedom from distant recurrence or death due to cancer at five years is 94.6%.
I am dancing on what eyelashes I have.
Vicky
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congrats suburbs!!!!
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coachvicky,
Sort-of makes the chemo worth it, no? I never did Mammaprint, but I assume I was high risk as well. Sadly, I still have fairly sparse eyelashes and it's been 2.5 years since I finished treatment....
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Elaine ... I finally got confidence in my treatment. So, yes, it has been worth it.
Vicky
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Soxfan, I am so glad to hear that cold capping worked for your with your chemo regimen! That gives me hope. I have heard that results vary depending on the type of chemo you are on. I have looked into Penguin and Arctic Cold Caps. The oncology office I've been going to seems to be really anti-cold capping, which is just adding to my anxiety. I have been really discouraged by the feedback I received from the doctor (it doesn't work and I don't believe in it) and by my family (you're being ridiculous if losing your hair is your biggest worry) and from the data I've read (results can vary depending on the type of chemo.) Depending on what changes from the surgery and depending on the type of chemo they put me on, I am really leaning towards cold capping regardless of what my family, the MO and the data says. Otherwise, I will get a wig and hope for the best. When will they have me meet with the chemo nurse?
Edited to add- Congrats coachvicky!
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toughcookie21,
I would talk to your MO about the throwing up. Make sure they know that you need every thing possible so you do not throw up. That is what they are there for. The best advice I can give you ( I am now done with chemo) is that your MO and the nurses work for you!!!!!! Always remember that. Your needs come first always. If you are sick they need to find a med to help you not be sick. I was nauseous with chemo very little. I told me MO that nausea is one this I would not put up with. I was able to work full time the whole 20 weeks of chemo.
As for the hair loss, I hate it but I can not stand cold packs or anything like that so cold capping was out for me.
Have they told you what chemo plan you will get?
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Hi shelabela, no they haven't told me definitively what chemo I'll be getting yet. Until two weeks ago when I found out that I was BRCA2 positive and HER2 positive, I was going for a lumpetomy with radiation and maybe chemo if the tumor had spread or if there were any positive lymph nodes. Then I got the HER2 status and a few days later I got the genetic tests back and everything changed... ugh. They told me yesterday that they would have a chemo plan after surgery, but that it was guaranteed because they won't give Herceptin without chemo. I get that and want to improve my chances, so chemo it is.
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Toughcookie...I used Penguin Cold Caps and kept my hair. It did shed a little, but nothing obvious. I was on Taxol and Herceptin once a week, every week for 3 months. Literally no one knew what I was going through unless I told them. It is true, it depends on your chemo regimen (and how thorough your Cold Cap administrator is...it wa labor intensive.) Please reach out If you have any questions.
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toughcookie_21 don't let your treatment center dissuade you from cold capping. My oncologist and nurses were all skeptics. But the studies are there that it works. It has taken off far more broadly on the west coast than a lot of the east coast, its really just so regional and hospital specific. But now my oncologist has referred several of her patients to me to ask about the process because she was amazed at my results. I actually ended up cutting my hair short after my surgery (which was after chemo) because my hair I lost started coming in so fast and furious under my thinner long hair and my look was a little crazy. But I kept hair through treatment, no wigs. I have kids and this helped a LOT I think to make them feel more at ease. I won't lie, it is a pain in the butt to add it to an already grueling day of chemotherapy. But it also is one of the few things I felt I had control over in this process. I recommend you join the cold capping thread here on BCO... tons of questions answered and real experiences. It does vary in how well it works, but I don't hear of very many people who did it who regret it.
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tough...my kids were 2 and 8 when I got diagnosed. Feel free to PM if you want to talk through how to handle the littles....
They can keep your nausea under control. As for hair...i pretended it was fun. So crazy kids...mommys medicine is gonna make her hair fall out. Can u believe It? So crazy right? Then I let them tell me scarves or wigs. My son was freaked out by wigs. So scarves it was. They picked them out for me every morning...
Hugs!
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Toughcookie_21, I did Penguin Cold Caps and I saved my hair with great results. I was on weekly Taxol and Herceptin, I did shed some hair but I think only I could tell. And my vacuum cleaner which picked up a bunch of my hair. But nobody would have guessed I went through chemo. Saving my hair did wonders for my frame of mind.
Also, FDA recently approved two different kinds of cold caps fairly recently. Don't let your MO tell you that it doesn't work. He/she simply has no experience with it and for whatever reason doesn't want to deal with it.
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My oncologist hovered over my head after round two. He said I thought you would be bald! The treatment center I go to now offers Cold Cap Therapy because of my experience. I remain forever grateful to my husband for hauling in all those ice chest with my gel caps to save my hair. Private message me if you'd like to dialogue more about this.
Vicky
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Hi there, I'm not sure if I'm considered triple positive or not. Initial results were ER+ PR- HER2+ but I also have pathology reports that specify ER 90% PR 20% HER2 3+. Is the PR actually positive or considered negative because it low at 20%. It's not a big deal, I'm just curious, thoughts?
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I haven't fallen off the Earth....
I'm now 7 days out from round #1 and whewwww wheeeeeee ... it's been a ride...
Friday infusion went well.. it was a long long day ...
Last Sat was ok.. feeling funky ..
Sunday I lost it .. it was a crazy day .. I think it was the steroids and the Zofran (sp?) absolutely can NOT take the stuff .. It makes me crazy!
My Neulasta went off without a hitch on Sunday...
Monday was better.. nausea being controlled well with the other anti nausea meds.. drinking a lot fluids..water and such ... walking up and down my driveway ... at night... diarrhea started... went overboard with the stool softener
Then Tuesday hit... wow.. I could write a book... ended up in the ER dehydrated and they said I had a UTI which I still don't think I did no sx's at all..
Wednesday back to the ER because my temp at home hit 100.5 ... but by the time I got to ER ..it was back down to normal... and stayed that way ...
It seems I spike a little temp about 5:00pmish ...I think its the Neulasta ...
Thursday feeling better..
Friday feeling better.. bone pain controlled by Claritian (sp?) and cold packs... but it hasn't really been a issues..
Nausea kept to a min. with meds..
I have chemo mouth.. but even that seems to be better ...
Have chemo brain.. but I'm good lol.. couldn't remember anything before all this ..
weepy ... I just let it flow.. I've got a right too .
diarrhea is still somewhat of a problem but going less since my MD called in RX .
Tired as crap but can't sleep more than 4 or 5 hours ..
Today I'm feeling better than yesterday but having a little palpitation here and there.. not sure what that's about .When they did my labs in the ER my WBC and RBC were good.. low .. but good ..
Whew.... and just think I get to do this all again in couple weeks..
Much love from TN
Denise0 -
FYI... do the cold caps... and ice down your fingers and toes!
Don't let anyone tell you different .. it works.. I did 1 hr of ice on my feet and hands while getting the Taxotere.... and so far so good.. no tingling no numbness ..
hugs from TN
Denise0 -
CONGRATULATIONS coach Vicky.
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Thank you HapB
I'm feeling better this evening ate a good dinner .. taste buds are coming back a bit... .... I think the key for me is fluids, the RN said I should drink 1/2 my weight in oz . And I've done it everyday bleahhh but it does help
Keep moving , which I haven't everyday but tried... and take the meds on time ... whew.. its been rough... but I made it .. now on to round 2.. which I will now know more about what's going on and what to look for ...
Cancer sucks...
Hugs from TN
Denise0 -
Thank you Solitude. I am feeling happy. My husband is thrilled.
HapB. I did not have radiation.
Originally, my MO gave me an 85% no recurrence based on the general population like me. I wanted the MammaPrint because I wanted to know the statistic from my tissue. When the 94.5% result came back for no recurrence if I completed all my chemo and the 5 year estrogen blocker, I had more confidence in my outcome.
Vicky
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The Oncotype test is not designed to evaluate HER2+ cancer, but Mammaprint can.
Just a word of caution about calculating the risks of recurrence. As Coach Vicky notes, recurrence rate calculations assume that you will be completing at least five years of hormonal therapy. However, many women quit their hormonal therapy early, due to quality of life issues. (There are multiple threads on BCO.org devoted to this issue.) For some of these women, chemo was more tolerable than hormonal therapy, if that can be imagined.
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HapB,
I believe all my bone pain is from the Neulasta.... ...0 -
hap - how fast did they run the infusion?
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Bone and back pain are side effects of Herceptin. Typically, the first Herceptin infusion is the worst, and the side effects are supposed to lessen in future infusions.
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had my first herceptin only last friday.what i experienced is reflux and altered taste.i believe my bone pain is from lupron... they ran it for 30 minutes..
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BJI
Yeah! Stories like yours helps me ( can't speak for others) a lot... Please don't feel guilty ... I'm surprised that I'm feeling this better after 9 days after chemo . It gives me hope..
Having a good attitude DOES help..... its not always attainable on the bad days and that is ok.. we're allowed to feel sad .... but just knowing there's a light at the end of the tunnel help on those dark days...
Never say your sorry feeling good.. we are all happy that you do !
Hugs from TN.
Denise0 -
Denise. I had a bit of constipation day one and two after chemo and then went too far to alleviate that and then had diarrhea. I know the battle. Feel better soon!
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hap - have them slow the Herceptin infusion back to 60 mins, preferably 90 mins. I had all of my Herceptin with chemo at 90 min infusions and never had any pain, first H only after chemo was complete was done in 30 mins and I was miserable. Slowed it down after that and had no further problems. If you center gives you trouble, know that it is not mandatory to run it in 30 - the dosing guidelines are 30-90, and it does make a difference - I have seen it too many times for it to be a fluke
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Thanks Moody....its been :::cough::: interesting for sure ..
Hugs from TN
Denise0 -
SK,
Thank you for that advice.. both my H and P were at 90 mins due to it being a "loading" dose .. whatever that means..
but they did tell me that it wouldn't take that long after that.. but if it's going make me miserable ..then well.. I don't mind spending the time ..
I will talk to the MO about it at our next appt.
Hugs from TN
Denise0 -
Denise - the loading dose is a larger initial dose - often why the first infusion has more intense side effects. A lot of patients find that subsequent infusions have somewhat milder side effects, at least until closer to the end when the cumulative nature may make some aspects stronger - like fatigue or muscle burning upon exertion due to reduced hemoglobin. I kept infusion times statis throughout chemo - never sped them up, and after the 30 min H only fiasco, went back to 90 minute infusions for the remainder of the year. I did well enough with those infusion times I felt I didn't want to shorten them.
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Hi Hapb,
I am surprised your MO said 85 percent chance when you are just stage 1a?? What do others think? With full treatment, I would expect 90 to 95 percent. I realize we recur or we don't recur, but I believe that is still a bit low. I had two oncs tell me that if neoadjuvant chemo wipes out all the cancer, then myself at 3a has about an 80 to 85 percent chance of no recurrence. A friend of mine with a top world oncologist at Duke said the same. I know they can't fully know and I am picking, but I'm saying I think you are in a good spot.
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