TRIPLE POSITIVE GROUP
Comments
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Could I please ask a question about neuropathy? Is this just something you experience just with Taxol, or is this something I might also experience with THCP chemo? I spoke to my doctor this morning about the cramps I've been having and he recommended a magnesium supplement, which I am going to get. I spoke to my boss, whose sister had cancer, and she said the pain I am describing is similar to her sister's neuropathy. Thank you for your help and I will look around on the boards too. We have a really nice lady on our November chemo board talking about icing and I appreciate all the help.
and I am going to guess Taxotere and Taxol are probably very common to each other, that thought just occurred to me. Thank you,
Lisa
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MissouriCatLady, I experienced what I would describe as 'mild' neuropathy on TCHP treatment. It didn't appear, however, until after my 4th infusion. For me, it started out as mild numbness in big toes, and then as I went on with treatment, it turned into more tingling and went to my finger tips. The worst it got was sometimes a shooting/burning sensation in my big toes. I brought it the attention of my medical team, and they told me to monitor if I start to trip over nothing, or if I have trouble buttoning any shirts. If it did, I would have to alert them.
Everyone reacts differently on treatment, but neuropathy can occur with TCHP.
Good luck!
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BigPeaches - my hair slowly crept up from the sides after chemo, the crown was last to fill in and I was really freaking worried until I achieved full scalp coverage. I know one woman who had TCHP twice and her hair looks fabulous now. I think permanent hair loss was my single biggest concern during chemo (and after).
MissouriCatLady - I got neuropathy on TCHP. It was fairly mild, just some numbness in my hands, feet, face, and tongue. It is still lingering in my toes and still barely perceptible in three fingertips. My last TCHP infusion was on July 11. I'm currently getting acupuncture to relieve the neuropathy (despite serious skepticism) but so far its been ineffective.
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Thank you so much xYoungandScared and hapa. I appreciate these tips very much. Best wishes to you, and thank you!!
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Missouricatlady...the other thing to watch out for when you start chemo is a bladder infection. I had burning when I peed, and assumed it was the chemo and upped my water intake. Told my MO and turned out to be an infection. You got this!
-tres
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Thanks, I will definitely check out that board. My mom did have her chemo class on Monday and my parents got a lot of good information.
They ended up switching the chemo regimen to TCHP. Her oncologist called out of the blue over the weekend and said she felt like she needed to fully explain the risks of both AC-T and TCHP before my mom made a final decision. She ultimately chose TCHP for several reasons. And she will be in H+P for the remainder of a full year.
She’ll start on Friday. I think our whole family is very anxious but trying to stay positive.0 -
KBM - I wish my cancer center had chemo classes. I showed up to a MO appointment on Friday and he said you start on Tuesday. No classes, no what to expect. Get all the info you can. It will make things easier.
Annie
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Hello, dear ladies. I am hoping to get advice from all of you because I know you know exactly what I am feeling. How do you stop worrying about the test results? How do you let go and live for the moment? I was diagnosed triple positive in January of this year. I've already had one mammo in June which was fine. I have another on December 10th. I am literally having an emotional breakdown over worrying about the upcoming mammogram. Right before Christmas. What if it shows something? My first grandchild was born about 2 1/2 months before I was diagnosed. I just found out I have a second grandchild due next July. I want to rejoice in the Christmas season. I want to look forward to watching my grandchildren grow up. But almost every day, I find myself fighting back tears from fear. What do you do when you feel the fear creeping in? I have friends that I talk to for support, I pray a lot and read the bible, I have a very supportive family. But for some reason, I'm letting the fear get the best of me right now. I'd love to know what you do to gain emotional strength. Thank you so much in advance!
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TLD - I understand your fears and anxiety - I think most of us feel it around mammogram time. However, you and I are some of lucky ones - early diagnosis and good treatment protocols. Even though the herceptin treatment seems to last forever, it has saved so many lives. You will no doubt dance at the weddings of those two grandkids and spoil them a lot because you appreciate each day. Talk to your MO or PA about whether you need a little chemical help to get you over this hump. You have been through a lot in the past 10 months and sometimes the stress gets multiplied. And then the holiday stress gets added in! Be good to yourself. Sounds as if you have a great support network. Taco
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TLD,
Cancer is the gift that keeps on giving, isn't it? It's giving you fears and anxiety about your future. Call me crazy, but I am happy to get mammograms. If there's something wrong, I want to know. I want to catch any recurrence early, and if I have a local recurrence, that's OK. I've already had localized breast cancer and I survived the treatment of it. I guess I only fear mets.
I'm with Taco; talk to your MO or GP or whatever. They might be able to recommend a therapist who specializes in breast cancer patients or recommend a mild antidepressant. I'm on Celexa because of mood swings from Aromasin; it's been a huge help.
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Taco and ElaineT are spot on. Talk to someone. Talk to someone who is QUALIFIED to diagnosis you. If you require a chemical Rx for help, then get it. Just ensure it is the right Rx for your condition.
This article may be helpful: https://www.breastcancer.org/research-newsbl/cancer-...
John Piper's book, "Don't Waste Your Cancer" was a BIG help to me. I still reread it. You write that you pray and read the Bible. This tiny book is a Christian approach to understanding cancer.
Once you have cancer, a cold is never just a cold. I believe a part of us always has a little worry or concern no matter how long we are from diagnosis.
Sometimes I still cry. It is not the hard cries as in the beginning. These are soft somewhat comforting cries. Tears can cleanse the soul.
Go easy on you. If your mammogram can wait until after Christmas, then reschedule it. Enjoy your holidays. Do as much or as little as you want this season. You might start a "thankful jar." Each day write one thing you are thankful for. Fold the paper and put it in a jar. Pick a time period to do this (i.e. every morning Thanksgiving through Christmas). On New Year's Eve read all of your papers.
I am glad you wrote on 3P. When I was early on and feeling like you are, it was the 3P Women that wrote me and gave me comfort. I truly do not believe I would be where I am without the women in this forum.
Please keep us posted on how you are doing. It will be better. It just takes time.
Vicky
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coachvicky, you are such a beautifull person with amazing writing skills. You put those things so lightly in exactly the right words. I'm sorry because I am not able to compose even this thank you in such a nice way (Engl. being my 3rd language). Your last posts were not addressed to me but affect me greatly nevertheless, in the most positive way. Thank you. And I will look up the book your mentioned.
Having a kind of bad emotional crisis this week... chemo is getting to me and I am actually fearing the end of it. how sick is that.
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JaBoo fearing the end of chemo seems like a normal thing to me. I felt that way. I was this amazing warrior princess during treatment, I was fighting, active doing something. Then treatment was over, and I fell apart for awhile. I'm back on track now but the year after treatment was HARD. So be kind to yourself. Hugs!
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Thank you so much, Taco, Elaine, and CoachVicky, for your response! CoachVicky, I found the book on amazon and downloaded it to my kindle. I've already read it and it is exactly what I needed to hear right now - thank you so much for telling me about it! All three of you ladies have comforted me and I am very grateful!
Jaboo, I wish you strength! I highly recommend the book that CoachVicky mentioned - I think it will make you feel better as well!
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tld2017 and JaBoo ... Thank you for your very kind words.
tld2017 ... I am so happy you liked the book. It really is a different mindset about having cancer.
JaBoo ... My husband says that "southern" is my native language and English is barely my second language, LOL! I can understand about coming to end of chemo. I think that the "structure" of treatment gives us some control. I didn't know what I would do on the 3rd Monday after my last Herceptin. I took forever to unpack my treatment bag. Tresjoli2 describes the end well!
Have a wonderful weekend everyone. Thanksgiving is coming up in the states. I cleaned the pantry in anticipation of cooking!
Love, Vicky
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Thank you for that advise. I’m having trouble hydrating on Taxol and the bone pain makes moving difficult but I get up anyway which helps. What I’m not understanding about being triple positive is this: My cancer was low grade. My tumor was 8mm.. I had an oncoplasty.which is more than a lumpectomy. My margins were clean, no lymph node involvement. I understand the need for chemotherapy and radiation treatments but now that I have neuropathy and my oncologist is concern it can be permanent.Now she wants to give me a drug the binds with herceptin which targeted the cancer cells specifically. My question is what cancer cells? I was told I was getting Chemotherapy to prevent the recurrence of breast cancer. As far as I’m concern cancer is gone.or my oncologist talked about taking 2 doses of Taxotere and be done with chemotherapy. I know Taxotere can be harsh on the body but 2 doses and I can move onto radiation treatments. Any insight is appreciated
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asknomore2,
Chemo is systemic treatment. It travels throughout your body to kill cancer cells that might have broken off from your tumor and are circulating in your bloodstream and/or lymph system. You are doing chemo to prevent those cells from setting up shop elsewhere in your body. In the worst cases, cancer cells find new homes in your bones or organs (liver, brain, lungs, etc.). If those cells do find a new home, you would be considered to have Stage IV cancer which is treatable but not curable. ((Hugs))
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ok thank you ElaineThere. That was helpful but it brings back to my rationale about taking Taxotere instead of the drug that specifically target cancer cells. What if that drug doesn’t target or recognized a cancer cell. I rather take Taxotere though harsh it may be. My Oncologist was saying hydration is an issue and needing Neulasta after Taxotere. I think I can survive 2 doses of Taxotere and I would worry the other drug didn’t target all of the cancer cells
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Hapa - Just wanted to share my latest echo results in comparison to the previous echoes since we are in the same boat. In my mid 30's, I was diagnosed with a left bundle branch block (was told it's not a big deal, it just means both sides of my heart are not in sinc).
Fast forward to breast cancer dx:
Started TCH July 2014 with my normal LVEF of 56. After 7 rounds of Herceptin, it was down to 35. I was placed on an ace inhibitor and a beta blocker and it came up to the low 50's. I still take both meds. Three months ago, my new cardiologist told me I would someday have to consider a pacemaker of sorts, then sent me for an echo. Now I'm back down to low 40's. I had been noticing some shortness of breath and wanted to make sure you are watching out for same and don't ignore it like I did. I will most likely go ahead with the pacemaker sooner than later to fix the left bundle branch block and hopefully get some relief from the breathlessness
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Asknomore2 - If I understand your question (if I haven't, just ignore this post).
The surgery removed the tumor but radiation is given in case some cells "escaped." Twenty years ago, when my DH was practicing general surgery - no breast surgeons then - mastectomy and lymph mode removal were standard. Now with better imaging and surgical changes, most of us with small tumors just get a lumpectomy, followed by radiation.
The + (positives) in the analysis of your tumor then influences further treatment. Herceptin has been a life-saver for those of us who are HER2+ but it seems to work best if given with a taxore. For small tumors, taxol is usually given. As I understand it, HER2 is a protein that can feed the tumor cells. Herceptin surpresses it. If you are progesterone and estrogen positive, you will receive an oral medication which suppresses those hormones (which are in our bodies even after menopause.) Tamoxifin used to be given to everyone. Now we older ladies get AI's which seems to work better for us.
I too had very painful neuropathy with Taxol. With my MO's support, I stopped after 8 infusions but continued to get herceptin every three weeks for almost a year. She said later that if I had lymph node involvement she would have pushed me harder to do all 12. I had no SE's with herceptin alone and my neuropathy resolved itself. My MO started me on the AI's about 6 weeks after my last taxol.
What is known about cancer and its treatment moves ahead rapidly. But there are no guarantees for any of us. Even if we know that only 1% of women with X diagnosis will have a reoccurrence, we don't know which one of us is the 1 out of 100. Talk to your MO and PA and keep asking question of them and of us until you are comfortable with your choices. And then don't look back!
The expert here is Coach Vicky and she may chime in on my explanation. I am also happy to have you PM me. It's a scary time and we have to make decisions sooner than we sometimes want to but it sounds as if your cancer was found early and your prognosis is therefore very good.
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MissouriCatLady:
I have some mild neuropathy that fluctuates. This mainly takes the form of mild numbness in my finger tips/parts of toes, but I think I have some auditory neuropathy as well which causes my sound perception to be a little off sometimes.
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asknomore2:
By "drug that binds with the Herceptin" does she mean Perjeta? I get both Herceptin and Perjeta. Herceptin attacks the HER2 receptors and Perjeta prevents other receptors from attaching to the HER2 receptors and activating them...when they are activated, they cause the cells to proliferate.
Some people get bad diarrhea from Perjeta but thankfully I haven't been one of them. Just a bit shortly after the infusion and a single Imodium tablet usually takes care of it.
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TACO ... I submit to SpecialK for the technical expertise. I read your explanation twice and it makes sense to me with what I have researched.
You write: But there are no guarantees for any of us. Even if we know that only 1% of women with X diagnosis will have a reoccurrence, we don't know which one of us is the 1 out of 100. Talk to your MO and PA and keep asking question of them and of us until you are comfortable with your choices. And then don't look back!
Your words are so very powerful. Each of us must select our treatment and not look back. I stopped Arimidex for 5 days while on vacation in late September. I had decided not to go back to it until my MO said that unless I finished I would never hear the word "cured." He has moved me to Aromisan. I am sleeping again and feeling much better except for a few side effects which should change with a new manufacturer.
The bottom line for me is that if I carried thru with stopping I would look back with worry.
We must each find our own path with peace.
Vicky
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Great discussion that makes me grateful for what I have already done despite all the bumps of starting, stopping, starting, delaying Herceptin. Happy to be given #9 the other day! But Dr. doesn’t want to start Anastrzole until I have completed Herceptin. I experienced neuropathy in my feet and fhandsbut it is much less so than when I finally completed TCH in early August. All these treatments have kept me focused On the present, now it is time to think in future tense...
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Thanks for all the information. I seen my Neurologist today and after his exam he feels the neuropathy is probably from the Taxol treatments not a MS flare. Both the Neurologist and my Oncologist says they are in new territory with me. There is study out there that says due to my ethnic group we are more at risk for developing neuropathy and I did. I’m not in a hurry to complete my other 5 doses of Taxol. I think I’m going to to take the options of Taxotere for 2 doses this will also help not to have a MS flare. I will continue on with herceptin for the year. My oncologist briefly discussed taking an oral drug for the 3,5, or 8 years butshe hasn’t decided which one yet. Sometimes I feel like a test tube patient.
WC -I don’t remember the name of the drug she is considering that binds with the herceptin but it is IV meds taken every 3 weeks. I would
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Hi asknomore2. The drug that is given with Herceptin is perjeta. In early 2017, for early BC, perjeta was only approved to be part of 6 cycles of TCHP in connection with neoadjuvant chemo. This approval has been expanded since then. I understand your anxiety. We all feel like test cases when we get a triple positive diagnosis. And standards of care have been changing rapidly. Sending healing thoughts. Hang in there
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Blownaway - I'm sorry to hear of your heart troubles! My last two echos had my LVEF down 10% from where it started. I was expecting a drop because my fitness has certainly suffered but that was more than I was expecting and I'm just hoping that it will go back up once I'm back out on the trails. I'm exhausted really fast these days which I'm told is expected but of course I can't help but wonder if I'm doing permanent damage to my heart. I hope you don't need a pacemaker.
asknomore - your MO might be referring to Kadcycla, which is herceptin bound to emtansine. The emtansine is a chemo drug but since it is linked to the herceptin, it only gets taken up by cells that take up the herceptin which are Her2+ cancer cells. I've heard rumors that Kadcycla is going to be approved for early stage breast cancer imminently. I don't think it is as effective by itself as herceptin plus a taxane, but it would cause a LOT less side effects, and is more effective than herceptin alone. I always feel so bad for people with comorbidities. I can't imagine having another health challenge thrown on top of all this breast cancer crap.
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Hi triple positive ladies,
I have nothing to say about those on taxol bc I had taxotere. Saying hi to everybody!
tld, sorry to hear about your anxiety and worry. How did you handle anxiety and stress in your life before cancer? Are there any resources in your cancer center you can use to deal with this? I talked to a psychiatrist specialized in cancer patients at my hospital and it was great. Very useful tips (including on how to deal with screening related anxiety), very reassuring experience. I would say you need to be the owner of your mental health and reach out for help. The uncertainty of the cancer returning is of course terrifying but something we all have to live with. Also you should take a hard look at your recurrence chances, because you have much reason for reassurance there. I had very aggressive cancer, positive nodes with macro-metastases even after very aggressive chemo, with lymphovascular invasion, with extra-nodal extension, with remaining matted nodes -and just every single ominous sign there can be. And my kids are little, both in elementary school. That others are doing worse than oneself is not automatic consolation, I know, but you have every reason to be very optimistic about your outlook.
I am now almost two weeks after my prophylactic mastectomy with tissue expander placement under pec muscle. Done! All went fine. I went home the day after the surgery (no pain) got drain removed a week after the surgery. Currently waiting for some bruising to resolve before I get some more fluid into my expander. Also waiting for the results of the pathology report -curious to know if what if anything was in there. Feeling good and I am back to work full time. I also got my port removed, although I have 4 H/P sessions to go (I will get the medication through my veins)
Next week I will see my MO for a H/P infusion and we will discuss Nerlynx -he was not up to date on this and he told me he would look into it for me.
Hapa, good to hear from you
Best to all,
LaughingGull
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Laughing ... you are Wonder Woman getting all that done and back to work! You go girl!
Ladies, when you want inspiration read Laughing's post's 3rd paragraph (I am now almost...) !
Vicky
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I know I have mentioned this before, but there are newbies here so I will cover it again. I was fortunate to participate in a study through the University of South Florida and Moffitt Cancer Center as I finished chemo and surgery, but still had continued Herceptin and reconstruction ahead of me. The purpose of this study was to determine, in a quantified manner with blood and saliva testing, whether meditation, yoga, and discussion with a psychologist could reduce the stress hormone cortisol and assist in helping breast cancer patients with state of mind. Here is a link to the study info:
https://clinicaltrials.gov/ct2/show/NCT01177124
The mindfulness based stress reduction techniques included reference to Jon Kabat-Zinn's book Full Catastrophe Living, and I recommend reading it and looking into mindfulness as a way to achieve some peace moving forward during and after treatment. My biggest takeaway from this study was that acknowledgment of the lack of control we have over our lives is key in coming to terms with life threatening disease. We can't waste time regretting the past (did I cause my cancer?), realize that we can't control the future (what if I have a recurrence?), we can only live in the current moment we are in. If I am worrying about the past or the future I am robbing myself of fully living in the moment, and wasting my time - and the moment I currently occupy is really all I have. Secondly, that constant multi-tasking is robbing me of peaceful appreciation of that current moment. I understand that we all have many things to do and think about, but one way to be "in the moment" is to embrace what you are actually doing at the time. My best example is doing the dishes - most of us are doing other things simultaneously - making lists in our head, thinking about what we have to do the next day, wrangling pets and children, etc. I suggest that you try to instead smell the dish soap, feel the dish in your hand, appreciate how the warm water feels on your hands, and do the task from start to finish without thinking about anything else. This may sound silly but it is a type of informal meditation practice with the intent of quieting the mind, and fully engaging in the moment. It is a way to help understand how to apply this to areas of your life that can give you greater peace and ability to live in the now.
I know this is not for everyone, but it has been a great help to me. I am further out from active treatment than many here on this thread and come to this discussion from a different perspective. This study, and what I learned, has helped me deal with numerous reconstruction challenges and surgeries and several recurrence scares.
laughinggull - you go girl!
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