TRIPLE POSITIVE GROUP
Comments
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thanks, Hapb...I didn't realize that Letrazole created back pain as much as other joints. I appreciate your input; could symptoms arise months after starting, you think?
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Hi everybody! I am a triple + too. I was diagnosed last May. I had chemo first then double mastectomy last December. The pathology report showed 1 out 22 lymph nodes with cancer and one extranodal extension. I will start radiotherapy for 5 weeks soon. I would like to know whether somebody had an extranodal extension and what treatment they had. Also I would like to know whether any of you have a diet or tip to help in our situation. I read that turmeric, pepper and olive oil might have the same effect as Herceptin but they can not be taken together.
Thanks to all.
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Vicky, i agree... i am not a survivor but a fighter for life. The clinic i go to has that survivor clinic counselor and its sorta like a question session, they go over where you are in diagnosis, talk about diet, exercise, what to expect next, how to move forward wth your new body, they also talk about acupuncture, massage therapy.
It is also the time they bring all the test results to the table and go over them. The appointment is 6 hours spilt in 2. Be a long day
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That 6 hour appointment split in 2 sounds WONDERFUL!
I would have greatly benefited from this structured approach that appears to look at the big picture.
Let us know how the appointments work out and what you learn.
Vicky
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coach - I like your post. I tend to use "cancer warrior" because that reminds me to fight and fight hard! I am grateful to say that cancer changed me for the better and I don't ever want to go back to who I was before. I am healthier despite the SEs from the AI and in a much better place mentally. I am more patient, calm, aware, stronger in faith and happy most of the time. While I am still recovering from the last revision surgery, I have high hopes that my body will once again feel "normal". It already looks much better than before diagnosis but I'm still working through the sensations from the DIEP surgery. My MO said something similar to your pastor i.e. most of his patients don't change their eating habits or reduce stress. He is a firm believer in building the immune system to fight off cancer without drugs. I appreciate that approach and work very hard at achieving that goal each day.
specialk - thanks for the great info on estrogen and that testing is available. I am very interested and will be asking my MO about it at my next visit.
posey - I'm so sorry to hear about your pain. I think when you are in a constant state of pain with no break, it wears you down and impacts your emotions. I don't typically complain about my pain to anyone other than in this group but there are times when my husband will ask me "you seem kind of down today". Most times it's because I didn't get enough sleep and I am just so tired of the pain I want to cry. You have a lot of other things going on too so it only seems logical that you are feeling down. I have had tailbone pain for almost 9 months now and it is very difficult for me to sit longer than an hour. My MO did an MRI and it didn't show anything; I think it would be a good idea for you to ask for one too just for peace of mind. That might help with your emotions a bit, at least I hope it does. Hug
Shelabela - your program sounds awesome. Yes please share any tips you learn.
Stress.....yes, I think it ruins your immune system and seems to be a key contributor to cancer. My MO asks at every visit how my stress level is and he has told me more than once how it impacts estrogen production. He told me even good stress produces estrogen and can also impact the immune system. I meditate every night and take walks around the building at work to get me away from the stressful environment surrounding my office. I am much, much better at managing stress than I was in my pre-cancer days which is another positive I can take away from all this
Milolove - welcome to our group, sorry you have to be here but you will find lots of great support and information. I follow the same diet as Hapb described, most of the time. I do allow myself a treat here and there. I feel a whole lot better since adopting this style of eating. Especially getting rid of sugar. I believe that is the number one thing that can make a difference in how you feel and help keep disease away. I use a lot of essential oils but have not heard of the combination you refer to in place of Herceptin.0 -
Thanks, Deni, for your sweet message. I don't think it's the pain that is upsetting me (it's really not much). It's the awareness that I feel an aching in the same spot for weeks. I've had the bone scan and an xray and last night (at midnight!) an MRI. So hopefully all is ok.
I wanted to let you ladies know of a link that popped up on my FB feed. It is www.lisaschwarzmd.com. She offers workshops or videos on nutrition for women after breast cancer treatment. She deals with all the questions and possibly conflicting questions that we all face on this topic. I know we've talked a lot about this on this thread, so I thought I'd mention. I've signed up to receive notification of a next video or workshop (not quite sure how it works yet). So you can go into her site and sign up if you're interested.
It's freezing cold here as I know it is over most of North America. Hope you're all staying bundled up. I have to walk my dog three times a day because of some leg surgery she had about 10 weeks ago. While I grumble like crazy about it, I'm glad I'm totally forced to walk. I am up to an hour a day doing this rehab thing with my dog, which is good since over the past few weeks I fell off the wagon of my exercise stuff (which will resume this week).
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Posey, my MO kept me on tamoxifen because she was worried about bone pain and bone density with an AI, even though I was technically postmenopausal with the Lupron. It was n option for me, but I was stage 1 so not sure if it's an option for u.
Shelabela - I was wayyy worse after treatment and my 1st anniversary than before. When I was in the thick of it I was a brave warrior...then it was over. All I had was a shell of the body I had before, lost my dream of having a third child, and felt so lost....im creeping up on my third anniversary, and I'm still trying to put it all back together. Be kind to yourself and we will all be right here with you...
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Posey, my MO kept me on tamoxifen because she was worried about bone pain and bone density with an AI, even though I was technically postmenopausal with the Lupron. It was n option for me, but I was stage 1 so not sure if it's an option for u.
Shelabela - I was wayyy worse after treatment and my 1st anniversary than before. When I was in the thick of it I was a brave warrior...then it was over. All I had was a shell of the body I had before, lost my dream of having a third child, and felt so lost....im creeping up on my third anniversary, and I'm still trying to put it all back together. Be kind to yourself and we will all be right here with you...
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Oh I don't like that article Hap, but I see myself and feel myself aging daily. Sucks.
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Hap - sounds about right. They save your life by destroying your health. I feel I've aged 10 years since diagnosed in April 2014
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Hapb, thanks for the reply...I appreciate your caring input. I still haven't heard back from the MRI. I actually am not in much pain. It's really more about the fear and anxiety that comes with anything persistent. Tresjoli, thank you too
. I really do want to stay on the AI...I had my ovaries out so I could do that and had based that decision on thinking that the AI might be a better bet. I didn't think Tamoxifen would be any option for me anymoreHere is a blog post I read and it really resonated with me. I have shared it on my local bc FB group and I think most really felt it was bang on. This lady is a great blogger; I've see her entries before.
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Question. I know the answer but, I wanted your perspective on it. Trying to explain to someone who is having a difficult time understanding the why. Maybe a different way of explaining will do.
BC stage 1 Triple Positive. Mastectomy, chemo, Herceptin and estrogen blockers. You do not have any lymph node involvement. If the cancer is gone why the continued treatment of estrogen blockers for years? The cancer is gone, and we're treating it as if it were still there, the mass is no longer feeding off of estrogen.....why are we being treated as if it were still active.
I have explained the lymphatic system etc.
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Hap, I hate the article, truly do, very depressing! Thanks for sharing though, it gives me more determination to treat my body good!
I am thinking positively on this though as I usually try to do. Yes the long term affects of chemo on our bodies will exist BUT, we know better now and are exercising, eating healthier, staying away from excess sugar, eating less processed foods, abstaining from alcohol (or at least cutting back), taking in foods that add benefits to our bodies and getting more rest. We are taking better care of ourselves now than we did before BC so, maybe....just maybe we will not fare too bad. If we were still pre-cancer we would continue to indulge in all of the things that were not healthy for us. Unhealthy lifestyle behaviors in general contribute to early aging and we as Americans (as we get older) tend to get sloppy with our eating habits AND lazy physically. I say we have a jump on getting ourselves healthy again!
Just a half full perspective. Here's to our new lifestyles HapB!
Melanie
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I don't get it either, Moody Blues. I do know my MammaPrint reported if I do chemo and the 5 year plan my non-recurrence is 94.6%.
Thus my decision to get an out-of-state second opinion to better understand (from a new MO) why this treatment and if there is anything else I should be doing. My current MO wrote in his notes that my DH and I were "shocked" to find out I needed chemo. Well, yes we were shocked. My Surgeon was surprised also. We thought that was why I had the BMX to get rid of the cancer. My lymphs were negative. So the current MO says that the chemo is to prevent it from coming back.
Vicky
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Vicky, when you get an answer I would love to hear the response from the new professionals. It's like treating an infection that has been gone for months with an antibiotic. It never made sense to me but, I followed the protocol never the less because I was told it is necessary. When this person brings the subject up, they have valid points and I have the research saying I need 'these' things to stay healthy BUT, I agree....the cancer is gone so why the treatment?
I look forward to hear what you find out!
Melanie
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moodyblues,
Even though we appear to be NED after treatment, there is no guarantee that some cancer cells didn't break off from the initial tumor and circulate through our bodies, either through the bloodstream or the lymphatic system. They may still be out there, looking to set up shop either in the breast or elsewhere. If our cancer tested positive for ER, (and mine was 95%), we do not want to feed any remaining cancer cells with estrogen. That said, it is highly unlikely that someone like you (who was Stage 1) will face a recurrence or mets. Your cancer was Grade 3, so there's that.
My stats are worse than yours are, so I'll do the AI. I'm good.
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Hap, I understand what you are saying. I feel like I'm an intelligent woman yet, the information contradicts being cancer free. I understand the part the lymphatic system plays in all of this so, maybe that is why they feel estrogen blockers are necessary...in case there at rogue cells lingering, I don't know. I am doing what they feel is necessary- for now, I am 55 now and looking forward to 85 and beyond!
Melanie
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Hapb, this is odd...the link works for me. Anyone else?
I think you ladies would like this blog piece...title is "Don't Ask Me To 'Get Over' My Breast Cancer History". It is on Huffington Post and written by Dr. Yunus.
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Hi everyone,
I agree that the cancer is supposed to be gone. I sure hope so. I am stuck doing AI again and while I didn't have any physical side effects, I was nutty. I didn't know it then, but I know it now. I fought with people over the stupidest stuff. Lost some due to it. I don't want to go nutty again.
Posey, thanks for sharing that article. I do like to read articles that say what I am going through, like it's not just us who have all these feelings.
Hap and Melanie, I am 55 and have aged over these past few months for sure. I also have great intentions to exercise but don't. I really need to get it together. Been having a pity party and need to regroup. I would love to make 85 and celebrate Hap turning 88.
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hi ladies
It’s been a long time since I was here. Hope everyone is well.
I have a friend who is also Triple positive her2.
First chemo and she has mouth sores. Anyone who dealt with this and what did you use. She tried biotene.
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KimCee. I feel so much better since my chemo ended and I am doing exceptional on just the Herceptin. I am working at lowering my sugar intake, drinking more water and walking more. I was robbed of 2017 and am believing 2018 will be really good. I do find the estrogen blocker makes me feel a bit overwhelmed and weepy at times, I do my best to push those feelings away. My gray hair is telling my age, I hope that it's a shimmery, shiny gray!
Posey and HapB, the link worked for me.
Melanie
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Thanks so much Melanie, good to know that there is light at the end of the tunnel. My last Taxol is two days away. I am glad to hear Herceptin may be fine. That's exactly how I feel, robbed. I hope your hair is shimmery shiny too 😁 How long did it take after your last chemo to start coming in? I totally forget from 18 years ago.
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Rinse with warm salt water several times a day. Also sugar free jolly rancher candy kept my mouth more moist than biotene.
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KimCee ... I understand about the fighting sutff. DH tells me I "swing after the bell" ... well he use to say that. Since I started the Ritalin, I really am more focused and less "nutty." My Psy said I would only take this about 6 months but I am going to ask him about taking it a little longer. And, yes, regroup girlfriend!
I think, Melanie, "rob" is the best word.The Nurse Practitioner on my MO Team said she thought Triple Positive was the hardest treatment because it is a full year. I think the every 21 day schedule keeps the treatment foremost in our minds for that year. It seemed like everything else was scheduled around treatment day.
About hair ... mine is now DARK...almost black. It is mostly black with silver. I am beginning to like it.
About aging ... I look so old to me now. DH doesn't see it. He's kind.
Vicky
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Hi ladies, welcome all new members, I have been following all the posts.
I had my last chemo on Monday and they nurse removed my piccline, finely, it was itching a lot lately. This last EC is hitting me hard, I am nauseaus, drained and lost my taste gir anything else but salt, a little sweet taste is coming back it seems though.
SpecialK, I am starting with my wbc shots on Friday and I got Clarityn 10 mg for the bone pain, when do I start? Today or tomorrow? I actually discussed it with my oncologist and she did not heard of Clarityn making any difference in this case but I told her what you posted before about Clarityn stopping the edema in the none marrow and she said that I can try it if it helps. So should I start taking it in advance or the same day I will take the first shot Cherry
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KimCee, my hair started coming in right after my chemo ended and I feel like it's thicker now than before I was dx'd with cancer. It's not long but, long enough to cover the top of my ears!!! The other day I was wondering whether to trim around my ears but, I haven't because I hate to cut my newly grown hair. I am glad that you are almost through with your Taxol!
Vicky, there is ALOT of gray and a great deal of dark under it. I will take a picture soon and post it if I can figure out how to do it.
Everyone: Genetic testing came back, I do not carry the BRCA gene! I have not passed that to my beautiful daughters, thank goodness!
I will have my mammogram the end of February on my remaining breast and I have an echo next week. My NP told me that she will set up my CT's and bone scan soon.....I feel a bit of anxiety about that. It is what it is, it has to be done I'm sure....? I wonder how good all those scans are for our bodies, oh and let's not forget about the dye.
Melanie
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moodyblues,
You look awesome! My hair grew back in curly, but it's back to its straight, stringy ways now. I don't care; once you haven't had hair, you come to appreciate having ANY hair on your head!
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Pre Chemo
Picture in blue shirt taken at the end of 2016. Here's to 2018 and new hair growth!
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Hap, thanks for the compliment. My hair is dark under with a heavy coating of grey on top, I have a skunk streak at the very top of my head that I should have posted.....I may still do that....it'll make you smile. I am sorry that you are having such a go with the treatments, I am positive that your anxiety makes you feel worse too. Worrying and stress isn't good for any of us and I know that you are terrified that there will be permanent damage. I hate that this isn't a good day for you, probably tomorrow will be better. ((hugs))
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Thanks Hap!
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