TRIPLE POSITIVE GROUP
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I found it!! Thank you !
Don't know what mine is or if my MD ordered it or not
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moodyblues,
I did have continuous cramping shortly before my last Taxol infusion. It was awful, but it only lasted three days (thankfully). Then, it went away on its own. At the time, I associated it with a stomach bug that had gone through my family and produced vomiting and diarrhea. However, it could very well have been the Taxol. Hope you feel better soon!
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denise - Ki67% is a measurement of a protein that is emitted from dividing cells - pathologists use it as a way to assess aggressiveness of the tumor material, but it can be different on differing parts of the tumor, as they are not homogenous. Oncologists view Ki67% as a piece of the pathological info, some put more weight on it than others. It can also be discordant with other pathological info depending on what part of the tumor is sampled for Ki67% and which for aspects of grade. Generally speaking if your KI67% is high you would expect the mitotic (dividing rate) score to be high, but it is not always.
moody - you're welcome! Is this cramping high or low, abdominally?
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Elaine. Thank you. I am hoping it will subside soon!
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SpecialK. Low.
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moody - make sure you are hydrating, try eating bland foods, and avoid aspirin and NSAIDS and see if that helps. Sometimes the stomach and GI tract become generally irritated since they are made up of cells that continually replace, and therefore are affected by chemo drugs. Even though you are experiencing lower abdominal discomfort you might benefit from some acid reducing meds - let your MO know and they may put you on some. Do you get IV Pepcid in your pre-meds?
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SpecialK. I am hydrating pretty well...fluids taste horrible, but I am pushing it! Yes, they did give me Pepcid during my infusion. I took extra strength Tums midday today which helped a good bit. At this point, I am trying a little bit of a lot of different foods to make sure I get my nutrients. Thanks for the FYI!
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moody - lemon helped - I did watered down lemonade, but you have to be careful because acidic foods can makes things worse and even potentially cause mouth sores. I found sweet and salty tastes didn't desert me completely, but I stayed away from spicy. I had GI distress and spent the first week alternating BRAT diet (bananas, rice, apples, toast) with any kind of potatoes. Once the first week or so passed, I tried to eat as much protein as possible to help boost my red blood cells and hemoglobin. I could not always taste it well, and texture was sometimes weird, but I ate it anyway. I had historically low hemoglobin so mine didn't have far to fall to need a transfusion - also - full disclosure, I worked in Transfusion Services at diagnosis - so I was unnaturally focused on this, haha!
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i found that I have to take a pepcid daily! Otherwise my lower stomach bothers me so much I can not eat.. I think I will try the BRAT diet. Did it help with tummy aches?
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I never had issues with indigestion or stomach aches, but I also had reflux surgery (Nissen Fundoplication) in 1995 so I have a closed stomach. I had the Big D for at least a week following every chemo infusion, except the last one for some reason. So, I did the BRAT to deal with that.
shelabela - it is worth a try, and there was enough variation within the BRAT - different kinds of toast, apples or applesauce, bananas on toast, different kinds of rice, etc., that I did ok. I didn't eat exclusively BRAT, I did add other bland foods like scrambled eggs, yogurt, fresh fruit, the aforementioned potatoes, and mac 'n cheese. Foods that contain acid themselves like citrus, tomatoes, things with vinegar like salad dressings, or hard to digest foods that require more stomach acid to break down, should be avoided.
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Yes, the Oncotype test is for breast cancer patients who are ER+/PR+/HER2-. For the most part, oncologists recommend that patients with HER2+ breast cancer get chemo, as is the case for patients with triple negative cancer. For really small tumors, like those which are less than .5 cm, oncologists may be less adamant about the chemo.
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hap - the OncotypeDx test was developed for patients who are ER+ and Her2- only. It is not because chemo is always called for that your tumor was not tested,, it is because the test was not designed and/or verified for Her2+ patients. Mammaprint genetic testing is available for those who are Her2+, but if you are Her2+, the results come back high risk for recurrence, almost without exception.
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Hello, I am very reluctantly asking if I can join your group here. I found out today that my tumor is also HER2+ after knowing for the past couple of weeks that it was ER+/PR+. Today has been the hardest day since finding out I had BC. I now know that chemo is a guarantee and my diagnosis much harder to treat successfully.
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toughcookie - welcome, sorry you have to be here. Prior to the use of Herceptin and Perjeta things were much different, but the advent of these targeted therapies has now brought a TP diagnosis alongside those who are Her2- in terms of prognosis. This is a bit of a marathon rather than a sprint, but you can get through this!
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Hi toughcookie_21. You have come to the right place for support and information. Everyone here has stood where you are now. Ask questions and express your concerns. We will be here to listen and help if possible. All the bes
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Special K ... you ain't lying ....
My NP said the with cancer treatment that it is treatable,prognoses was good..but its going to be a long haul....
I'm to the point now...I'm ready to get started,NOT lol... but yeah.. I want to get things moving ...
I had posted when I first came onto BC.org boards, I was just shelled shocked after I got my diagnoses confirmed ... someone told me once you get your plan in place... and things start take place, it would be better... emotions and mind ...
They were right ... now I know what we are dealing with... what we are going to treat this with to get it beat back or even gone....
There's a sense of calm ( calm before the storm maybe? ) I know there are medicine and surgery ... and the things I can do to keep this old body going .
My Oncologist said " don't be too optimistic but don't be too pessimistic either .. it is what it is ... "
There's hope and a chance...0 -
Toughcookie,
Yes, it's no fun, being told that your cancer is HER2+. I can still hear my oncologist saying, "It's growing like kudzu!" Really cheered me up, ya know? Thankfully, there's Herceptin and Perjeta today. I feel so blessed to have these options. ((Hugs))
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I hope this is ok to post here... I found it on FB ... too good not to share... there is a little cussing in it ... but worth it
What's it like to go through cancer treatment?What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE'S A MOUNTAIN LION IN YOUR FRIDGE.
Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!
So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" - and you really appreciate the support, but the mountain lion is still coming.
Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"
As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they're half grown and only have three legs or whatever, and you think to yourself - why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?
Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE," and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he's bought you some time, but you still need to get to the top of the mountain.
Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."
Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.
Maybe. You're not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!"
Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "fuck this mountain, I never wanted to climb it in the first place.""
— Caitlin Feeley - the one, the only, the magnificent.
(The only edits I've made are a few carriage returns for readability. - DPK)0 -
Denise - I love that. So true. I especially like the description of the push-pull or "why me" and "thank goodness it isn't any worse!" Thanks for sharing.
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Toughcookie: I think most of us found the HER2 the real "kick in the gut." I had both surgery and radiation when the final path report came back. I took it seriously though. Still makes me nervous with my first mammogram and my second echo coming up.
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Hi SpecialK, thanks for the info on Femara... I started it (Teva brand) a few days ago. We will see.
I know I need to get more serious about diet. The sugar...how do I give up my treats???? How did you transition? I am eating quite well, but go for my cookies. Argggh.
Hap, no one can tell you how much treatment to get... that's so true. If it were me (I.e. If I had your diagnosis), i'd still throw the book at it. Everything, no question. But that's me. I see the occasional story of someone who was diagnosed DCIS for crying out loud, and they recurred!! This is rare rare I am sure, but it proves that you don't totally know "what got away". If someone came up to me and said "actually, would you do four more chemos?", I'd reply "stick that sucker in my arm". That's just me
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deniset - hilarious!!! But, true.
posey - giving up sugar was hard and definitely not for everyone, but worth it for me. I was super cranky for about 2-3 weeks, then I adapted, and desserts actually tasted overly sweet to me and I didn't crave them any longer.
hap - us old timers are here for you!
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Thanks, ladies. I want to definitely cut right back. my husband was just saying that tonight. Yes, I love frozen berries and might make that my new habit - thanks, Hap. I know that as with everything, a habit takes time to form. But form it does. It starts with a decision. I have made that decision with alcohol, so I can do it with sugar. And I definitely have heard about sugar withdrawal, SpecialK.
Re: Femara, I feel very stiff - particularly at night. I feel 48 going on 78. Hips the most. And knees. Good grief
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posey - eliminating inflammatory foods can help with that Femara induced joint pain - just a little added incentive, lol!
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PoseyGirl,
Joint pain is a very common side effect of the AIs. From hanging around the Aromasin board, I gather that for some women, the side effects decrease over time. For others, they never do, and the women in question have to decide whether or not to stay on their AI, or shop around for a gentler hormonal therapy. You can try out different generics as Special K did. You can try Aromasin or Letrazole instead of Femara. Or, you can always try Tamoxifen.
For me, the longer I sit, the creakier I feel when I get up. I've been taking walks with my sons, and am taking my youngest to the pool for an hour a day (weather permitting). At work, where I sit at a desk, I make sure to get up a few times an hour to do something in another area of my department. Hope your side effects decrease!
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Specialk. Having a lot less SES with food today. I had scrambled eggs and grits last night and it went well. I do have toast each day with p-nut butter, which always tastes so good. I am grateful for you sharing your tips with us, it has been working! I can tell that I've lost a few pounds but with that said, I had a few to lose, BUT I don't want an unhealthy diet so, I try healthier foods (even though bland). Tums helped me too and I will call MO today to see if they can call in Pepcid just in case I go through this again.
Thanks everyone!
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Thanks everyone for welcoming me. HapB- I totally know how you feel about being on the fence about it, I am too. My reasons are very selfish for not wanting chemo. I am one of those 10% of people who would forego chemo to save her hair. I am hopeful that I can use cold caps, but I understand they don't have the best results with certain types of chemo. I've been looking at wigs online and it just makes me feel sick inside to know what's going on under the wig. I am confident that I can deal with the other side effects and I plan to work through the treatment. I guess my mind is already made up.
Reading the story of the mountain lion and bear helped me this morning. I am going to climb the stupid mountain.
I ironically cut out sugar and carbs back in January because I got sick of carrying around the extra 30 pounds of "baby weight" that I gained 11 years ago when my first child was born and the slow creep on the scale that was pushing me close to 190 pounds. The tipping point was in January when I was at a conference in Tampa and I ordered chocolate cake and red wine from room service after coming back to the hotel from a 3-course dinner with coworkers and customers (hey- I don't have to pay for this, I'll just put it on my company Amex) and there I was at 11:00 at night drinking red wine and eating chocolate cake!
My husband got on board with the diet and we both lost over 10 pounds each by March, which was when I noticed the dimple in my right breast. I searched online and discovered that it could be cancer or it could be the weight loss. I had hoped it was the weight loss, but obviously it wasn't. I've continued to eat healthy and avoid sugar and simple carbs and dramatically limit alcohol. It is not easy, but I felt better almost immediately after starting the diet. My mental clarity and energy levels were much better and I was working out 4 days a week until the cancer diagnosis. I lost another 6 pounds from March to now but I haven't been working out as much. My point in sharing this is that if I could cut out wine, cookies and cake, you can too! I've been reading about the positive effects of fasting, avoiding alcohol and reducing inflammatory foods and even if it doesn't help me kick this cancer, it has at least made me feel better mentally and physically.
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Hap....
I am scared to death... of all the what if's .. they are at every corner.. and ALL of us have ever right to be scared sh$tless .. there are no absolute in this cancer fight or in life...
But we lean into that fear... we take that energy and turn it into being well informed .. to take care of your body and your mind... to make the best choices for our own good...
and we fight...every damn day...sometimes we right the cancer,sometimes we fight our selves ... but we fight ...
the best quote that I have found so far and I repeat to myself often ...
Its ok to be scared but do it anyway ....
You are in my thoughts and prayers..
Much support from Tennesssee0 -
toughcookie- sorry you have to be here but this is a great place for information and support. Triple positive is a scary diagnosis but as specialk mentioned, HP therapy is providing good results. Definitely a marathon for all of us and we're here for each other throughout. Ask questions and do lots of reading to lessen the anxiety. You are in my prayers, hang in there
Deniset- what a hoot, thanks for sharing! Laughing is good for us
Regarding sugar - I agree with specialk, after the first couple of weeks with no sugar I found desserts and such are just too sweet. My mind thinks I want something sweet but when I indulge it's not really satisfying anymore. I find pizza much more rewarding at this point especially since I cut out dairy too and have pizza rarely these days.
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