TRIPLE POSITIVE GROUP
Comments
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kae - my concern for hap with 21 day dosing is the potential for greater SE with a higher dose, even with a 90 minute infusion time
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Hap, my heart goes out to you. I understand some of your concerns, but obviously not all, as I'm not in your shoes.
I had triple positive cancer in 2010 in my left breast (along with some ILC that was only ER and PR+). I had the breast removed, and really wanted the breast surgeon to remove both so I didn't have to worry so much in the future, he refused to remove a perfectly healthy breast. I did three rounds of FEC (I'm in Australia and it's standard of care here) and then started Taxotere and Herceptin. FEC treated me moderately well, I could have done it again if I had to. Taxotere was an absolute nightmare for me and I could only do two of the treatments. Herceptin - for me - was a breeze. Towards the end of the twelve months it was getting hard, I had the big D and headaches, but nothing that stopped me from going to work full time.
Five years and one month after my first dx I found a lump in my right breast - the perfectly healthy one I wanted removed along with the left one. To say I was in shock is an understatement. My whole world dropped out from under me. I'd had an MRI seven months previously and there was absolutely no indication of any sort of cancer present. I'd seen my onc only a month previously and he'd done a breast examination and didn't feel anything. But when I found this lump - it was 2.5cm. I was convinced it was triple positive again. I told my husband that there was no way on this earth that I was going to do chemo again. It nearly killed me last time. I would have done the Herceptin - that part was easy, but not the chemo. He just smiled, held me and said he'd stand by what ever I decided.
It wasn't triple positive - this time it was triple negative. I was still adamant - no chemo, and by now I knew soooooooo much more about bc because of this wonderful community. I was terrified. Chemo was going to decimate me. I was still on an AI from the first bc - and will be on it for the rest of my life according to my onc, and I have quite debilitating ses from it. I decided that at 59 quality of life was way more important that quantity.
I did see my onc, and by then I'd decided I should give chemo a go, if it got too bad, I'd just stop.
My onc prescribed three treatments of AC every three weeks and then 12 weekly doses of Taxol. I couldn't have four doses of AC as I'd already had three lots of Epirubicin (part of the FEC) the first time around and the A part of AC is a similar drug and you can only have a lifetime dose of six. I was terrified of the Taxol, because of the way I reacted to Taxotere last time. Well this time the AC nearly killed me - and every time I'd say I'm not going back. But I did. Then it was time for the Taxol. It was so much easier than the Taxotere had been. It wasn't without it's problems, my liver started to shut down, so we had to postpone treatments for a while, but I got there in the end.
Am I glad I did it? Yes - I'm still here, but have lots of problems that have been caused by chemo. But I'm living with them - they aren't so bad I wished I was dead.
If I found out I had it again, would I do chemo again? I really don't know. I mean that - I really don't know. It would probably depend on how old I was, and where the cancer was. If it was another breast (I know, we only have two - but for the sake of this argument and we had three!...) I would seriously consider it.
That's my story though - you have to decide for yourself if you want quality of life, quantity of life, fear that you've done the wrong thing, all the things that goes through our minds.
I have a friend who had very small "spots" of triple + bc in her breast and felt lucky that it was so small and not "too bad". She didn't have a taxane (either Taxotere or Taxol), just FEC and 12 months of Herceptin. She then refused an AI as she didn't want hot flashes. She is now stage IV and in a lot of pain. Another friend also didn't have the full treatment, and told me to be careful of taking an AI as it was the "devil's drug" and she's now passed away.
It's your choice, and no-one can make it for you. I would support you no matter what you decided. I do, however, support giving something a go before dismissing it. I know you've already had Herceptin and are getting pain from it? But I'm not sure if it's just one treatment or more.
Breast cancer reduces us to a quivering mess sometimes. No matter how intelligent, strong, brave - or whatever other descriptor you care to insert here - breast cancer steals our minds, our decision making processes, in my case it stole my self confidence and self assurance. Don't worry - I've got it back now!
You are probably at a point where you just have to make a choice and make it one you can live with for the rest of your life. Easy!! LOL!!
You are in my thoughts.
Trish
xoxox
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Hap - I hope you come up with a decision that you are happy with. I totally understand doing things on your own, will make everything so much harder for you.
Have you thought about having weekly Taxol and Herceptin? The weekly Taxol is so much easier to tolerate than a three weekly dose dense treatment.
Trishxoxo
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HapB - I've been away from my computer for a while and just want you to know that I'm sorry not to have answered your questions sooner and also to assure you that you are not alone. You have all of us!!!
Long before breast cancer, I had been diagnosed with left bundle branch block and also slight high b/p. My normal LVEF was 56 and I saw a cardiologist because my heart rate would get scary high at the gym. Fast forward to the age of 57 and b/c...
I didn't realize at the time that I had a decision to make regarding treatment. The onco said taxotere carboplatin herceptin every 3 weeks for 6 infusions, then herceptin alone for a year. An echo before treatment showed 56%. T/C was stopped after only 4 infusions, my body/labs prevented further chemo. I had 3 or 4 more H infusions and I was having breathing problems and my lower legs and feet were huge. An echo was done and my LVEF was down to 35%. I was told that I was banned from Herceptin forever. Although my cardiologist says that my LVEF is low 50's, I am currently taking both carvedilol and lisinopril "to protect my heart" and that I could very possibly develope future heart issues from the H and the radiation to the left side.
Even with all this, I would recommend going forth with the full treatment and insisting on an echo before each infusion. I wish they had checked me sooner than the standard 3/4 months.
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HapB,
I hope you make the right decision but no one here can make that for you. I have been following along and you have been given wonderful advice. Some you have taken and some you seem to just skip right over. I'm sorry but it sounds to me like you are wanting someone here to tell you "NO DO NOT TAKE CHEMO AGAIN" But honestly it is you decision and only yours. Sorry if you think I am being rude. I have done tons of research myself for my own type and stage. No matter the age of a person there is always the risk of recurrence. It is just a fact of life. We have all been dealt a crappy hand (some worse then others) How you decide to fight this crappy hand is all on your shoulders.
Again sorry if you think I am being rude. I wish you all the luck in this huge decision that you have to make.
Shelabela
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Hap, I would recommend seeing a cardiologist if you're concerned about your heart. My cardiologist said he recommends all patients be on some sort of medication prior to certain chemo and Herceptin/Perjeta. That is a practice that his office has recently started doing. It never hurts to get additional counseling when you're making such life changing decisions.
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just checking in. Hap...i have been reading along and all decisions are yours. God helps tremendously but we need to listen. Your body will tell you. Your mind will lead you, trust your instincts from the knowledge you have gained here. Looking back, my journey was tough then, now i am at a fairly good place. Tomorrow, who knows. Live today as God has given it to you, and don't worry, we are in His hands. And all of us B C. Survivors, we can only help with words, and prayers. Be survivors till your last breathe.
Maryann
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Yeah, I never knew how painful it was until it happened to me. I'm glad the massages are helping you with your sciatic pain. I wish I would have caught it early enough, but it appeared to be my herniated disc that was causing the problem. I wish I knew what caused it. I've never had a problem with my lower back or that nerve before being diagnosed with BC.
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HapB,
It's still not that clear to me. I've been reading other forum topics of people who have the same symptoms. None of them have been taking Herceptin.
Someone at my office has a totally different cancer. She's having the same issue as me. It's her L5-S1 disc that is ruptured. I gave her the name of my neurosurgeon. She has an appointment with him in a couple of weeks.
She went through chemotherapy for something else. Herceptin wasn't involved in her situation either.
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HapB - Obviously, once every 3 months was not enough for me. I went downhill fast. Afterwards, I had 36 rads and have been on Tamoxifen for 2-1/2 yeqrs. Since I didn't complete any of the recommended treatment, other than the rads, I'm scared not to take the Tamoxifen.
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HapB.... sometimes you have to eat what you can.... I know for me Lay's Potato's chips was the only thing that I could choke down and I've been drinking Country Time lemon aid.. Not something I normally eat ... but its that or lose too much weight..
My MO said during chemo she wasn't worried what I was eating as long as I got enough protein ... and fluids...
If ice cream is the only thing the woman can get down.... that's all she can do ... its high calorie and does have protein which she needs I'm betting ..and if she is having a lot diarrhea and nausea the sugar in the ice cream may help with her energy level ....
For me after chemo is a whole other ball game ... that's why I'm going to RD that specialize in cancer patients in Aug. ...
I already know how my eating habits are going to change.. just want her to fill in the blanks for me ....
But for right now..if its potato chips and lemon aid is all I can stomach then I'm going to eat it ...0 -
Ladies,
My time here is done... not mad .. just need to step back and focus on me and not the net so much...
Already have ask the Mods to take me off..
If you are on FaceBook..look me up.
I wish everyone the best..
Mucho Love
Denise Tordoff0 -
Denise. Sorry to hear, but understand. Take care, prayers for you. Will miss your input and insight.
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Being judgemental about what others choose to eat is not a good idea, but never more so than when they're in the midst of chemotherapy. I ate and drank things during TCHP and AC that ordinarily wouldn't see the inside of my kitchen. If someone had called me out on that I would have flown at them with claws and fangs bared.
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Thank you BJI
Look me up o FB tho
Blessings... and Healing0 -
An optimistic study:
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I am so new at the TP world that I have hesitated from becoming part of the recent kerfuffle concerning the role of sugar in cancer but I have to say I really don't get it.
Just as I was grateful to SpecialK's post on the importance of protein in the healing process I was equally grateful to HapB for pointing out how sugar can fuel cancer cells. I wasn't even thinking about the role of nutrition during cancer treatment because I have been too busy panicking and reading articles about HER2 treatment.
But attending to my nutritional needs is something I can try to control myself during this time when so much is out of my control. I'm not sure how successful I'll be as meals have taken a real hit since my diagnosis but now I am at least thinking about what I should be doing.
My bottom line is that I appreciate any knowledge I gain, from any source, without exception, so please keep it coming.
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I am so new at the TP world that I have hesitated from becoming part of the recent kerfuffle concerning the role of sugar in cancer but I have to say I really don't get it.
Just as I was grateful to SpecialK's post on the importance of protein in the healing process I was equally grateful to HapB for pointing out how sugar can fuel cancer cells. I wasn't even thinking about the role of nutrition during cancer treatment because I have been too busy panicking and reading articles about HER2 treatment.
But what I put into my body is something I can try to control myself during this time when so much is out of my control. I'm not sure how successful I'll be as meals have taken a real hit since my diagnosis but now I am at least thinking about what I should be doing.
My bottom line is that I appreciate any knowledge I gain, from any source, without exception, so please keep it coming.
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Actually, the role of sugar in encouraging cancer has been much discussed on BCO.org. It is very controversial, and many BCO.org members consider it to be junk science. For example, one opponent of this view is ChiSandy, who has often written about the fallacy that "sugar feeds cancer." As she notes, "Now, nobody needs sugar, especially not as sucrose or fructose or from refined carbohydrates that become simple sugar when acted upon by the enzymes in saliva and the gut. Sugar is responsible for a whole host of ills, from Type 2 diabetes to insulin resistance to reactive hypoglycemia to fat storage and inhibition of fat burning. But sugar--in the form of glucose, which the body turns it into, fuels ALL cells, not just cancer cells."
As for me, I ate chocolate chip cookies during chemo and saw all of my active cancer wiped out by chemo. To each their own!
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ElaineThere - It's not that I take everything/anything that is written here as fact, by any means, but posts about nutrition gave me food for thought, if you don't mind the pun. I'll read lots about the subject, draw my own conclusions, work out my own plan, and eat what I choose, but I'll still be grateful to SpecialK and HepB for opening this door for me.
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HapB - thanks for the resource list!
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HapB, no I didn't read the actual report, just viewed the video via Cancer Network - Journal of Oncology.
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Hapb - I wish you peace with whatever decision you make regarding treatment. I agree with Shelabela and others that this decision is a tough one we each have to make but in the end it is truly up to each individual. For me personally, I learned to rely on my doctors instead of the tons of information available online or the advice from well-meaning friends and family. Listen to your gut and more importantly pray to God for guidance. My faith in God has helped me tremendously in not trying to control the future. I do not know if or when my cancer will come back but I have learned not to waste precious time or energy worrying about tomorrow. I enjoy each day as it comes and turn my worry over to God. I rarely think about recurrence and focus instead on all that I have to be thankful for today!
In response to nutrition, I gave up just about all food when I was first diagnosed because I was so scared that whatever I put in my mouth would make the cancer grow and spread. I had terrible eating habits and drank what I now realize was way to many cocktails! I read everything possible about cancer and nutrition but in the end decided that an 80/20 rule works best for me. I strive for eating a plant based, no dairy-beef-sugar-gluten-alcohol-processed meats-artificial foods diet 80% of the time and allow myself "treats" 20% of the time. I find desserts, ice cream, donuts, etc. too sweet now and I get a stomach ache when I eat beef or dairy. That helps me stay away from the bad stuff lol. My son told me something that has stuck with me more than anything I read about cancer and nutrition: my old eating and drinking habits plus a high stress job and lifestyle created the perfect environment in my body for cancer to grow. Making any changes to your diet and lifestyle has to produce the opposite effect, right? I lost 40 pounds and kept it off and eliminated stress from my life. I don't want to be so strict with my diet that I can't enjoy life otherwise what's the point. This is what works for me and I have gotten rid of the anxiety that comes with "will eating this cause my cancer to grow or come back?".
Lita, I agree with your approach that you'll draw your own conclusions and come up with your own plan for nutrition - we all have to make choices that are right for us. I am always reading articles or books on cancer nutrition because it can't hurt to expand our learning and try new things that might boost our immunity. Hapb - thanks for the list of books!
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Hapb - I wish you peace with whatever decision you make regarding treatment. I agree with Shelabela and others that this decision is a tough one we each have to make but in the end it is truly up to each individual. For me personally, I learned to rely on my doctors instead of the tons of information available online or the advice from well-meaning friends and family. Listen to your gut and more importantly pray to God for guidance. My faith in God has helped me tremendously in not trying to control the future. I do not know if or when my cancer will come back but I have learned not to waste precious time or energy worrying about tomorrow. I enjoy each day as it comes and turn my worry over to God. I rarely think about recurrence and focus instead on all that I have to be thankful for today!
In response to nutrition, I gave up just about all food when I was first diagnosed because I was so scared that whatever I put in my mouth would make the cancer grow and spread. I had terrible eating habits and drank what I now realize was way to many cocktails! I read everything possible about cancer and nutrition but in the end decided that an 80/20 rule works best for me. I strive for eating a plant based, no dairy-beef-sugar-gluten-alcohol-processed meats-artificial foods diet 80% of the time and allow myself "treats" 20% of the time. I find desserts, ice cream, donuts, etc. too sweet now and I get a stomach ache when I eat beef or dairy. That helps me stay away from the bad stuff lol. My son told me something that has stuck with me more than anything I read about cancer and nutrition: my old eating and drinking habits plus a high stress job and lifestyle created the perfect environment in my body for cancer to grow. Making any changes to your diet and lifestyle has to produce the opposite effect, right? I lost 40 pounds and kept it off and eliminated stress from my life. I don't want to be so strict with my diet that I can't enjoy life otherwise what's the point. This is what works for me and I have gotten rid of the anxiety that comes with "will eating this cause my cancer to grow or come back?".
Lita, I agree with your approach that you'll draw your own conclusions and come up with your own plan for nutrition - we all have to make choices that are right for us. I am always reading articles or books on cancer nutrition because it can't hurt to expand our learning and try new things that might boost our immunity. Hapb - thanks for the list of books!
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Hapb - I agree, I find it fun to learn about nutrition too. Learning new things is always a good thing and I'm learning so much through this community. It sounds like we've been living the same lifestyle with stressful jobs, little sleep, and trying to do way more than we should. Unfortunately I got caught up in all the convenience foods and terrible eating habits as a divorced working mom. I can't believe the crap I fed to my kids. Thankfully my son is a chef and my daughter eats only organic food so they changed their eating habits for the good. Now it's my turn! I feel so much better since I've changed what I eat and honestly, whenever I eat the treat foods I don't feel as good.0
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Hi Ladies - I don't post here often, but I've been following the thread for quite some time. I just finished my last chemo 11 days ago and I noticed today that I have a lump above my collar bone. I had four lymph nodes removed back in February and two of them came back positive for microscopic amounts of cancer. Is it possible for the cancer to have spread to the superclavicular node and be the size of a walnut in just five months? I've also experienced some lightheadedness in the last three weeks that seems to be more pronounced when I'm tired or when I move my head too quickly. It was worse 2-3 weeks ago and seems to have gotten better. I'm not sure if the two are related, but thought I'd include it. Any insight is appreciated.
I'm waiting for the doctor's to return my call, but the waiting is excruciating. I've never been so scared.
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Thanks HapB. My temp is 99.0 so maybe you're right and I do have an infection somewhere. I have a CT scan scheduled for Thursday as part of my treatment planning for radiation. Will that tell them anything?
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Soxfan75,
Yes, your CT scan could be informative. Ask your radiation oncologist about that particular spot. In the meantime, it's a good thing you called your doctor. HapB is right that it could be an infection, and having a 99 degree temperature could be a sign of that. But, it never hurts to be vigilant and to keep your doctor informed!
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HapB - I haven't seen my GP since right after my diagnosis in January. I spoke with the cancer center a few minutes ago and my MO is going to see me on Thursday when I have my CT scan. They believe it's probably my body reacting to an infection of some kind, but they're going to be cautious and check me just in case.
ElaineThere - I'll definitely mention it to my RO for sure. It can't hurt to have a second set of eyes take a look at it.
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anyone read the new BCO article on nerlynx? Just approved for use after herceptin to help prevent recurrance? Did I read that right?
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