TRIPLE POSITIVE GROUP
Comments
-
Shelabela, I hope they turn out just they way you want them too.
For those of you who did AC is it hard on the nails? Do I need to ice my feet and hands?
-
Cherry, I never iced my feet or hands during AC or Taxol. Never had an issue with my nails.
-
Oh HapB.
I'm sorry that you've been having such problems. What did your doctors say? My oncologist always says that you only have one heart. Treatment isn't worth it if your heart is having problems. ((Hugs))
-
HapB, so sorry to hear that, my oncologist says that se of Herceptin are almost always reversible Cherry
-
I had a follow up appt with NP yesterday and when I mentioned the bone pain with the Herceptin, she acted surprised as she had never heard of bone pain with Herceptin (HapB, it made me think of you).
I have an appointment for genetic testing in December and hopefully I haven't passed the nasty BC genetic trait to my daughters. Hopefully this testing will also show if I am a carrier of the colon cancer gene as well, we have had multiple colon cancer deaths and dx's in our family...I pray that I haven't.
I will meet with a nutritionalist who will hopefully help me wade through all of the conflicting info on what we should or should not be consuming as HER2 patients, I feel that it may be pretty much of what I already know but, I may also learn something new. I will pass the info to you all of what I learn. One thing for sure....everything changes from week to week and year to year so what they say is good now, may be a no, no later.
Herceptin#2: I took the advice of several of you and asked my nurse to infuse the Herceptin at 1 hour instead of 30 minutes she did last time, we will see if it makes a difference! I'll start my AI's when they get my FISH (estrogen levels) back and I am a bit nervous about the SE's.
SX scheduled for 11/28 for tissue expander removal and implant, I can't wait to have my breast finished! Although I have a lifetime of monitoring ahead, I am celebrating the very large milestones I'm hitting now.
Sarcastic laugh for today OR
OR just shaking my head? Young receptionist at oncologists office said to me that she understands how I feel about maybe having a prophylactic MX on right breast in the future as she had both her breasts removed too. I asked if she had BC or if she had the genetic trait passed to her, she said no. (silence) ??? Well why did you have both breasts removed then? Oh did I say removed? I meant reduced. I had a reduction on both breasts. Yeah, she knows how I feel.....she totally does. She should know better than to compare the loss of breasts due to BC with her voluntary bilateral breast reduction. Just sayin'Melanie
-
MoodyBlues,
There is a forum on BCO called "stupid comments." You have got to put that receptionist's comments up there! Did you set her straight?
Vicky
-
About that mini vacation ...
We went to the Louisville, KY area for a "romp" at Churchill Downs with Kentucky Colonels from around the world. Here is a link to the Kentucky Colonels' website: https://www.kycolonels.org/. My husband is a Kentucky Colonel. We won $5.80 on a $6.00 bet.
We have gone for many years. We missed last year because on my chemo treatments. I look back on 2016 and realized how much of our lives were "put on hold" to deal with surgeries, recovery, and treatments. To all of going through this now, I promise life will get better and you will control your lives again.
We had a great time visiting the area. We had both been stationed at Ft Knox, KY (DH while in the Army and me as an Army Civilian). We visited with friends from the past.
Here is a picture.
Vicky
-
Hi Everyone - Question please - Has anyone waited to start Anti-Estrogen Pills until after Herceptin was finished to see if SE's were specific to which drug?
I called my MO's office today to check the status of 'pre-meds' and was told my MO was too busy (unfortunately) and wouldn't call my insurance until 7 days prior. Is this normal? (First Chemo starts Nov 28)
FYI - My friend started taking Femara a few months ago (no Herceptin/ No chemo/ No radiation - bmx only) and had to stop, the pain in her fingers/joints/legs were so bad she couldn't walk/drive.
-
Vicky, Whistling. Can you hear me? You look absolutely beautiful! What a nice picture of you two.
To answer your question, I was so stunned with her comment that I just stared at her (thus the silence) and then said "You know it's NOT the same thing right?" For goodness sake Vicky, she works at the oncologists office!!!
Melanie
-
HapB. I think it comes down to quality of life as you make your decisions. Several years ago I read a book about death and dying and I remember I came away from it understanding that if you have no quality of life, you have no life. For instance, if you are in 'terrible pain' ALL of the time because of meds or disease and cannot enjoy life, what is life? I can't answer your question on what to do because each person has different views on what they feel is quality living. I am 55 now (not too far behind you) and I have not started the AI's yet, I will soon, I will make those decisions on the meds when I come to it. As of this moment I have alot less pain with the Herceptin than last time and I should be able to tell if the AI's are causing a SE or if it is the Herceptin. Once again, I will have to wait and see how things go and maybe even have to try several before settling on one or none. I will make a very large attempt to do so.
Hap, I think that you have been through an amazing amount of pressure with the three cancers, an accumulation of years of treatment meds, chemo, SE's and the emotional toll. May I suggest you do one thing at a time? If your physician feels a break from Herceptin is what you need then take that time and try again. Ask him to wait to do the AI's until after Herceptin is completed and if you decide to quit 'H' then work on trying the new AI. You have so much on you right now and it can (understandably so) overwhelm you.
When I went to my support group (general cancer, not just BC) two weeks ago I was overwhelmed with something and I shared it with my group, one woman nay sayed my feelings and then went on to tell me what I should do (what she did) and disregarded my feelings. A man ventured that if I wrote my questions down and got a second opinion (faxed to MD before the visit), that I could stop my endless researching and allow the professional to do the work (this is what he did). He said it would take a load off of my plate and leave the work to the MD. The woman and the man had two different views and I went with what I felt was best for me. I said all of that to say this, each of us will have differing opinions on what you should do, YOU will have to decide what feels right for you. We are not in your body and feeling what you feel and we're not in your head feeling the great distress that you feel. Know that we are all in this BC fight together and we feel your pain. Please continue to reach out to us here and to others who may be able to help walk you through this.
Love, Melanie
-
Shelabela good to hear something from you again~ and you are absolutely right you deserve whatever you want after this. Take care and thinking of you and hoping all is good! Kim~
-
Great picture Vicky and thanks for the words of encouragement!
-
Thanks for all the kind comments. And the whistling!
Melanie, you really can't fix stupid, can you? However, I would probably say something to the Oncologist or at least the Office Manager about her comparison. It was cruel. You are somewhat down the road on your journey and maybe not as scared or as in shock as in the beginning. I am not sure I could have handled a comment like that when first diagnosed.
Vicky
-
coachvicky, a delightful picture of you and your husband, thank you for the words of encouragement
-
moodyblues, people are ignorant, she probably thinks she meant well.I do though agree with you that a receptionist in oncologist office, in case she does not know better someone of the doctors should have told her how inappropriate her comment was. Cherry
-
Well Hap ... I would get in my car and get away for a few days. I would go see a trusted friend or relative. I would drink red wine and eat shell fish ... lots of shell fish. I would eat real pasta too (not this gluten free stuff I eat now!).
I will tell you the trip to Louisville did more for me emotionally than I ever thought it would. It felt normal. No one knew I had BC. DH and I talked about the new nipples but not about BC.
I will also share that my occasional visits to a Psychiatrist has really helped. He understand the medical part of BC without me reliving it and he offers some sound advice and great questions. I think I research a lot and can get wrapped up in all of this that it begins to get overwhelming. One of the first things the Psychiatrist had me do was identify some goals. He said part of my problem was that I could navigate this journey but I had not defined my end state (goals). You would think in my line of work I would have figured that out. (duh) I have been so consumed with just living that I was really existing.
Maybe a few days in a new environment would clear your head and help you decide what path you want to take.
Whatever you decide, I have your back. I will never question your decision unless you ask me for my opinion.
Keeping you in my prayers.
Vicky
-
HapB, is it possible that your recent accident have caused some of your heart issues? Just hypothetically, it sounded like a pretty serious accident to me. This is hard to give advice, I would have given the treatments a try, I would have taken more treatment, I already feel that I have no quality of life, all this constant fear and feeling yuk, the treatments suck, I agree, and some people go on with everything and still relapse, and some doctors say maybe you do not anything more than a surgery, but they do not know who needs and who does not so they treat everybody. This famous professor I talked to pleaded both times that I should stop googling and trust them and I told him of course, I understand but I still have trouble to trust the doctors. Just as Melanie said, try to do one thing at a time, but whatever you choose it is your decision, no one should question it.Cherry
-
Hap ... enjoy the pie, the walks, the beach and time to be with yourself.
Vicky
-
HapB, I gained a lot of weight and trying to lose it now, but this body just graves sugar. This pie and ice cream will do wonders, I had a huge slice yesterday after my walk, so much for dieting. This life without any alcohol or sugar, it has no quality indeed, sometimes you have to indulge yourself.I will not have any more sugar today, I had my dried apricots and fruits, but the only thing I am thinking about right now is chocolate ice cream in my freezer. Cherry
-
HapB, no profound wisdom but just felt like you could use a hug....(((((((((HUG))))))). Hoping some sunshine sneaks through the clouds. If not....cuss those damn clouds to your hearts content & we will be right beside you giving them our 2 cents too!!
-
Absolutely beautiful picture Vicky...great couple you two make. I went to Louisville two years ago. First time, loved it. Went to the Derby too, so exciting. Glad you had a great time.
HapB, I know you are discouraged and disgusted. I may have missed a post. Did you have to stop Taxol too? Can your MO try another AI? I had no side effects on Femara, two of my friends stopped it because the side effects were horrendous. Maybe another could work? Sending you a gentle hug
-
Hi all, Just letting you know I am following your posts. At my last visit to my oncologist she said "consider yourself cured, you are cancer-free", she went on telling me the statistics are so good with my type of cancer and not to worry, they will monitor me every 3 months due to the size of my tumor. I wish it was once a year as with most patients. I think it is important for me at this point to listen to the doctor and try to accept and let this go a bit and just live. I read my journals and understand half of it but will not bother finding out more. I am aware of the danger, aware it might hit me again, it might come back and kill me but for now I choose to say to myself I am cured and now I am slowly trying to build up my body again. Very slow I might ad..:) Exercise was never my strong side..:) This illness sucks, there is no cure, science do not know, that is the point with the word cancer, it is not solved. We are all in ways part of a big experiment becoming statistics. I am thanking everyone that has gone before me every day. I would have died within one year was it 2004,targeted drugs was given first time to patients in 2005 in Sweden. Yes, the medications itself might kill me, but the cancer would have for sure without it. I am on letrozol for 10 years and those side effects might show up more severely as time goes by, I try not to think about it. HapB I understand your frustration. It is not fair and it sucks. Trying to find a "cancer free zone" where you do not think about it might be a good idea, just for a few hours, like coach vicky said, perhaps treat yourself to a trip or a day at a spa, or do anything to get your mind off it for a bit...a movie can help..anything...I stopped following many of my previous cancer groups because I do not want the constant reminder..I am not posting as much here anymore which does not mean I do not care...My hair is growing back, I am at work, I meet friends again, I go for dinners out, I am just trying to enjoy each day more fully. I am so happy to still be around. Lots of love to you all.
-
Kattis894 ... What a wonderful post! Cancer free and cured! Words we all want to hear.
Hair, work, friends, dinners ... enjoy living... for a long time and to the fullest.
Vicky
-
Hahaha Vicky....yes I thought I would never say it...and hair is a good thing..also my new smaller chest...I am so happy to be flat chested like those catwalk models...:) well small on one side and totally flat on the other...a reconstruction has to wait for a long time...I do not want any more operations for a while...but I am happy I am rid of those huge heavy tanks I was carrying before...:) My port is still a reminder it might have to be used again...so "cured" might be a big word but I am still hearing it...
-
Yes HapB keeping my fingers crossed you will be ok enough to take a well deserved trip and do something you enjoy, if not a trip something you like to do close by..
-
HapB- you are always in my prayers. Whatever decision you made, I know all the ladies behind you. What Vicky said is so truth quality of life is very important, as you said “we beat Cancer to live, not live to beat Cancer”. Take a deep breath my pink sister, get away a day or two might not be a bad idea. Hugs
-
HapB, you're welcome. I like Vicky's idea very much, get in your car and take a ride, eat the prohibited food and kick your heels up!
Melanie
-
Hapb - I am very sorry that you have had a tough week and are experiencing such terrible side effects. Now your heart health is seriously at risk; you have really been more then your fair share of challenges. Deciding to follow the standard of care or taking a different path is dependent on each individual's view of quality of life. From my perspective, suffering from pain so intense you can't move, taking drugs that have caused serious damage to a vital organ, and missing out on all the things that give you joy does not sound like quality of life. I have a close friend who has uterine cancer that has spread to both lungs. She started her cancer journey in May. The chemo and all the drugs she is taking to counteract the side effects have left her completely housebound and unable to function past the basics like going to the bathroom. She too is trying to decide whether to stay the course or stop and try to regain quality of life. I can't give you or my friend the answer you're looking for but I can share what I would do. I decided a long time ago to choose quality of life over chemo should my cancer return or spread. I have been against chemo way before I was diagnosed, just my own personal opinion based on nothing other than watching many loved ones suffer through the devastating effects. God blessed me with the opportunity to participate in a clinical trial w/o chemo and I was lucky my body responded w/o damage to my heart. Not everyone would be willing to take the risk I did because there are so many unknowns when there is no data to depend on. I felt this decision was right for me and I don't think about what may be, I focus on what is happening right now in this moment. We as individuals have to make the right decision and only you can make the decision that is right for YOU. I pray you find peace in whatever path you choose.
I agree with the other girls that for now, it might be best to step away and treat yourself in some way that brings you true joy. Go away with your daughter and enjoy God's many gifts - watching the sunset on a beach somewhere, having a spa day, or taking a walk and soaking in the autumn sights and smells. I think taking a break from at least one of the drugs might ease some of your side effects and anxiety on what to do next. You have an enormous amount of stress in your life and I find when I am in stress, pain or tired I just don't make good decisions.
The stats you provided sound very promising and are the same my MO provided. I remember coachvicky saying "our bodies, our choice". I don't see that you've had surgery - can you stop treatments and go to surgery so you know the pathology? Is that even an option? That would certainly help with your decision.
Life is full of tough decisions and there is none harder than the one you're trying to make now. You have to choose and I have faith you will make the right decision to move forward. You must get your joy back! Keeping you in my prayers, hugs -
Coachvicky, what a wonderful picture of you and your hubby. You are an inspiration to us all on what we can look forward to. You are truly beautiful in so many ways. I hope to be as proud of my new boobs as you are when I'm done with recon - I wasn't going to proceed with revisions or a nipple tattoo but your excitement (and my PS wanting to finish what he started) has me looking forward to my new body
Kattis - congrats on being cancer free and cured. I LOVE your attitude to listen to the doctor and just live. I am taking that approach too and living in the moment. I have turned the corner with my mood swings I was having a month or so ago and now celebrate each day for the gift that it is. Thanks for sharing your positivity!
Shelabela, you go girl! You definitely deserve to get the boobs you want after all you have been through. I had DIEP recon and have a flat stomach for the first time in a long time. My flat stomach keeps me motivated to eat healthy so I don't ruin the new body my PS is creating for me. You're approaching the finish line with Herceptin, yay for you
-
Cherry, I will keep you in my prayers as you proceed with the additional infusions. I know that decision wasn't easy for you but it seems like you have discussed all options with the best doctors available to you. Sounds like you have found a way to recapture your joy through cooking. Congrats on your gumbo
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team