Calling all TNs
Comments
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Marsha,
Your news made my day and week and month and more!
Have a blessed Christmas.
Janet
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Thank you everyone, VL22, AgathaNYC, anotherNYCGirl, ALHusband, mkn86, Flynn, who send me your comfort words. I am feeling much better now. I am gonna deal with the not-so-good chemo result by ignore it. I'll have surgery next week and I'll just pray the surgery and the following Taxol chemo will work for me. For those who did surgery first, I understand sometimes we want as much information as we can. But sometimes not knowing is also a bless.
I have mentioned carboplatin to my MO, but she is against it, saying there is no definite evidence it works for long term survival. I am not giving up yet. There is a clinical trial with carboplatin and Xeloda, and I'll try to get into it after my surgery. My MO is not very open to new treatment. She insists on conventional medications, which may or may not be a good thing.
Marsha, Congratulations! It's amazing news and your story does encourage me a lot! It's so very important we don't lose our hope in this long and tough battle.
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kellychameleon - I hope your appointment goes well on Thursday and that you can celebrate your 2 year anniversary on Friday with a worry-free heart.
A4ggy - I don't have an answer to your question, but wanted to say hello. You are just one DD Taxol ahead of me in treatment. I know it's scary to wait for scans to see just how well the neoadj chemo has worked. Wishing the best for you!
Lookingforward66 - I am so excited and happy for you! What great news. I love to hear stories of one of us TNBC gearing up to celebrate a 5 year anniversary. Best wishes for relief from your arthritis.
ewu - I'm glad you're feeling better now. we're all here for you.
I'll be going for my 2nd DD Taxol on Friday. The side effects haven't been too bad except for some numbness/tingling in fingertips and a burning rash on my inner arms. I really hope that the SE's don't get worse since I don't want to pull back on treatment. I can still feel my tumor and I'm so hopeful I won't be able to feel it anymore before surgery. I'm almost afraid to hope for a pCR, but I'm trying to be more brave and hope BIG. (Yesterday I received a box in the mail from an on-line order of spices with a colorful heart sticker that read "Embrace Hope" -- taking that as a sign!)
I'm also considering asking to get a consult with a different surgeon at my breast center. The breast surgeon I've seen a few times since my diagnosis in September doesn't make me feel secure or confident. The communication between us is bad (she didn't tell me exactly how far the cancer had invaded my pictorial muscle), she is a bit dismissive of my concerns (about things like lymphoma and ear flaps) and there have been a couple of times she has forgotten specifics of my case (or didn't bother to look at my case file before appointment.) However, I have no reason to think she isn't a good surgeon. I'm pretty conflicted on this front. Do you think it's appropriate to ask my MO for her advice? I have an excellent relationship with my MO and trust her.
Hope everyone's having a good week! Stay warm everyone if you are in a cold area - today's the coldest day yet here in NYC. Brrrrrr.
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AgathaNYC,I think it’s totally ok to ask your MO for advice. I was the opposite, I bonded immediately with my BS but not so much with the MO. We talked about it and her perspective was really helpful.
Glad you are feeling better EWU! I hope your surgery & rest of treatment go smoothly.
I’m two weeks post bilateral mastectomy today. So tired of physical restrictions but healing well, according to my PS. I hope things are going well for everyone else today!
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Agatha, I had a similar experience with my BS and decided to switch (post port surgery/pre mastectomy). Best decision ever. My first appointment with the BS, right after I was diagnosed, was horrible and all doom and gloom. I left her office completely hopeless. After I met with my fabulous MO, I realized that this was treatable, and my spirit was lifted. The BS that I switched too was also incredibly encouraging. I feel lucky to have found such great doctors and am so glad that I made the decision to leave the one that I was uncomfortable with.
Speaking of my wonderful MO, I saw her this morning, and the horrible rash by my breast that had me terrified is shingles! I never in my life would have thought I would be happy to have shingles. Ha. I have been freaking out all week thinking it was cancer related. Thankfully it's a fairly mild case, and I got a prescription for it. I also got an RX for Celexa to help with my anxiety.
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Yay, Kelly!!!
Two years ago today...my last chemo treatment!!
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Congratulations Batesburg!!!
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Hi everyone,
I’m 40 years old. Diagnosed last june. Since then i had 4x AC & 9 taxol. After surgery we discovered that the removed node was positive. It really shocked me because they cjecked three times in june amd the testd vame out negative. Also during surgery i also had some 6mm tumor left. So now oncologist recommended Xeloda after radiation. I agree, and i will do whatever it takes.
I try to keep busy, trust the proces and try to enjoy life. But everday i have moments where anxiety kicks in. It’s terrifying!
One thing i can’t get out of my mind is my fear for metastases i’m afraid we missed something, especially because my body aches sometimes. Does anyone recognize this? How did you deal with that?
It really helps to read the survivor posts! Thank you all for sharing and i'm so happy to read you are doing well.
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Papillon I think we can all identify with that feeling. For me it has just taken time to feel less anxious and I don’t think the anxiety will ever go completely. One day, one breath at a time is my mantra, and I do deep mindful breathing and meditation when it gets too much, which helps a lot.
Kelly I was chuckling about your joy at being diagnosed with shingles, who’d have thought? But do take it easy you need to look after yourself and get plenty of rest and recover fully. Make sure you don’t do too much this Christmas.
Marsha I’m so relieved and thrilled about your clear results. That’s fantastic news.
And EWU, my tumour shrank a bit with CEF and then disappeared completely with Taxol which I think is quite common, and as others have said there are lots of other treatment options if it doesn’t all go as planned.
Love to you all. X
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Batesburg - Congrats on the 2 year mark post-chemo!
KellyChameleon - I'm glad it's "just" shingles. I had it earlier this year down my left arm. It's a real drag, but better than cancer :-)
Thanks also for the advice (and Flynn, too) on switching surgeons before my surgery. I met with my MO team yesterday and discussed it. Before chemo I meet with MO's RN first to discuss side effects and concerns before my MO gives me a physical exam and more discussion of concerns. I started by asking the RN about getting a second surgery consult. She said absolutely and they would share records, but that the surgeon had to be at another facility! HUH?! She explained it's hospital policy that once you begin treatment for a cancer you are committed to the team. They NEVER told me anything, nor do I remember signing anything that you were stuck with doctor that you begin with at Memorial Sloan Kettering. Their official stance is that all the doctors are equally qualified to carry out the treatment that the team has prescribed for each particular case. She said there is an appeal process that has to go through their Patient Representative department and the final decision will be the head of the department (surgery in my case) but changes are rarely approved. Wow - this was the first time I have been unhappy with MSK as an institution. I explained to the RN, with whom I have a good relationship, all the specific reasons I was uncomfortable with my surgeon. I was well prepared with a organized list but I still got emotional and started to cry when I expressed the stress it was causing me (not proud - but hey, I couldn't help it.) She agreed if it were her she's want someone different, too. When we were done going over this week's progress/side effects she said she'd quickly duck in to speak with my MO about the appeal to switch surgeons. She then popped her head back in and said "we'll get you a new surgeon." WHEW! When I met with my MO I got the good news my tumor is shrinking more (it didn't seem so to me but perhaps that's because I'm feeling it everyday and not every two weeks). Then the sit down to discuss the presentation to the the Patient Representatives to request a switch. She said that the request would most likely be approved if it came from her. She and I discussed a number of options of new surgeons, their pros and cons, and agreed on two. She'll speak with them and see who can take me on soonest (my neoadj chemo ends in a month.) I've researched patient reviews on both of these surgeons and I am confident that either one would be a much better partner on my route to recovery. She'll also set a up a meeting with a RO that she thinks will be a good fit.
I can't tell you how much better I feel right now compared to 24-hours ago. I appreciate the encouragement you gave me. The old adage that you don't get what you want unless you ask is true. Or God helps those who help themselves (which I've been uncomfortable with but maybe I'm starting to understand.)
THANK YOU to everyone on these message boards for how much you share of yourselves and how much support you give each other.
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I don't check the boards very often, but when I check this thread, I am always hopeful that we will hear from dear Annie. Annie, I was saddened to hear your news. But, it is obvious to anyone who knows and loves you, as we all do, that your spirit and strength have never been stronger. I can picture you loving that precious new grandson! What joy our children and grandchildren give us!
You have been and will always be an angel to all of us here. You have lifted us up, made us laugh and cry, helped us put our worries in perspective like no other. I can feel your light all the way from the other side of the world. I'm sure many of us, if we are very, very lucky, have known one or two special people in our lives who have profoundly affected us and others by their strong spirit and love. You are one of those special people.
You and your family are in my prayers for strength, absence of pain, and the sweet little joys each day brings.
Love, Paula
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Good morning. I hope everyone is having/had a good Sunday.
I went to an essential oil presentation yesterday and they were sharing that Frankincense is good for breast cancer prevention.
Have any of you heard of this before??
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Batesburg...never heard of Frankincense in relation to breast cancer prevention. What do you do with it? Have you heardabout using CBD oil?
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Hi, Batesburg. I've read about frankincense, esp. the variety called Boswellia Sacra, being tested to to help treat cancers, even TNBC, but not necessarily prevention. I believe for the most part they test very concentrated distillations on cells, not live patients.Below are a couple of links to study descriptions if you are interested.
https://www.ncbi.nlm.nih.gov/pubmed/22171782
https://www.ncbi.nlm.nih.gov/pubmed/24908637
https://www.cancertutor.com/truth-cancer-essential... (general discussion of essential oils and cancer)
I happen to really like the smell of frankincense so I use it in diffuser and have added some of the essential oil to a cream I use on my breast. I don't know if it's really going to do anything or not because the concentrations of the effective biochemicals are pretty weak when used this way. But, I like it!
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Thanks, Agatha.
This is really helpful information. I suppose with anything....believing in its healing power is most of the battle!!!
Cathy...I have not heard about CBD oil. Tell me more!!!
Janet
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Batesburg...Janet, I read about CBD oil when I was first diagnosed. It's canabis that does not get you high. Those who believe in it believe it relieves many ailments and that is a miracle in many respects. There has been much talk and research regarding preventing cancer spread and/or cancer prevention. You can buy oil, cream or edibles. I bought a bottle of oil when I was in Amsterdam this summer. My friend who suffers from neuropathy bought some also and swears it cured her. Do some research, but specifically Charlotte's Web. It's legal but not cheap. If you choose to buy some, Charlotte’s Web is a reputable source. But, be mindful that for every proponent there is a detractor. I know many people who use CBD in various forms with excellent results. Most users claim it relieves pain, nausea and stress. After you do some research, let me know your thoughts. I'm buying some edibles in a week or two. Just waiting for my Charlotte's Web rep to get some in stock
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Kelly, - Hooray for shingles! (No one, other than us, can understand how delighted we are with reports of shingles, arthritis, etc!!) WIshing you a speedy recovery!!
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Celebrating 5 years this week!!! (And I was 70 percent clear after chemo, showing that chemo doesn't have to be 100 percent clear of BC after chemo for treatto be effective.) Wishing this gives hope to all going through treatment!
Hugs, Peggy
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thanks, Peggy! That DOES give so many of us hope!
Cheers to YOU!
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Congratulations Peggy!
quick question: how long do MOs recommend we keep our ports? i’m just assuming maybe TNs will have a different length of time. my MO said 1 year, max 2 and i’m just wondering if that’s standard. Thank you
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Thanks for your post, Peggy! It is so good to read stories like yours!
WIshing you (and all here!) decades more of good health!
Hugs from NYC!
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mkn86 ~ My MO told me I would keep mine for 2 years. My MIL had hers taken out right away but she wasn't TN.
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it seems like the length of time to keep the port varies drastically with oncologists. Mine was removed 1 week after last chemo. Had there been an open appt., it could have been the next day all with oncologist approval.
I don't understand the reason for keeping them. If, heaven forbid, we have a reoccurance,putting the port back in is the least of our worries.
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I had my port in for about 4 months after final chemo. Was removed during my exchange surgery.
Congrats to those reaching milestones. It's a big deal....celebrate!!
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Evening all. Mandy here, Annie's daughter. I'm sorry to be writing with such sad news, but mum passed away this evening (11.10pm NZ time). She went peacefully and is now with her beloved Cocker Spaniel, Tessa along with her mum, dad, sister and brother and an army of animals. I know that she would wish you all the vey best and hope that you can keep up the flight through your cancer treatments. She will be forever in your pocket and you will be forever in hers. Mandy x
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Thank you for posting, Mandy. We are all in your pocket as well as you find peace and healing. I imagine a huge outpouring of love and gratitude for your Mom in celebrating her impact on this world...certainly her never ending influence of humor and love on this board will be forever felt.
much love,
Janet
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Cocker....Mandy, I knew this news would come eventually, but I held on to the hope that there was still time left. I did not have the blessing of knowing your mom as long as some of the other women here. But, from the beginning I felt the love and support she gave so naturally and freely. We will always feel her impact as I know you will also. I wish you and your family peace and love as you heal. Please keep in touch from time to time. ❤️Cathy
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Oh Mandy! I am sooooo sorry. The world has lost a true gem. Your Mom's posts were always caring and wise and witty. She was loved and will be missed by her family, but also by so many of us all over the world. Thank you for sharing her with us.
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Mandy - so sorry for your loss.
My last chemo is today - yes! - and I’m getting my port out today. I’m at a very good cancer center, so when my MO suggested it I felt very comfortable. It really gives me confidence that I’m going to move on and be well. For me, it is the right choice
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VL, - Congrats on last treatment! and getting that port out is terrific, too!
Great way to enjoy the holidays!!
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