Podcast: Hope After a Triple-Negative Diagnosis
Comments
-
GOOD thoughts and wishes going and here for you when results are done. Hope you are able to maintain rest and stress level!
Hugs,
Donna
0 -
After getting such good news regarding the results of the MRI test, I knew I could only expect to hear good news about the PET scan. Well the doctor called and said the chemo isn't working. I have new lesions in my chest area rt side and now we have to change the game plan.
I go in on Monday to discuss the plan, answer questions, and cry! It's so hard to formulate questions in my current mind state. I do know she wants to stop xeloda and start me on Abraxane and atezolizumab.
If anyone can think of questions to ask please send them over. I will try to keep you all updated.
0 -
After getting such good news regarding the results of the MRI test, I knew I could only expect to hear good news about the PET scan. Well the doctor called and said the chemo isn't working. I have new lesions in my chest area rt side and now we have to change the game plan.
I go in on Monday to discuss the plan, answer questions, and cry! It's so hard to formulate questions in my current mind state. I do know she wants to stop xeloda and start me on Abraxane and atezolizumab.
If anyone can think of questions to ask please send them over. I will try to keep you all updated.
0 -
momkidsgrandkids38, no suggested questions to offer, but I'm so very sorry that the PET scan news wasn't good. I hope the new drug combo proves helpful.
Lyn
0 -
I would ask about the testing you might be able to have to determine.... 1. is it still TNBC, or could it have morphed?, 2. If it is TNBC, what subtype? Basal or non basal? 3. Has there been PD-L1 or EFGR testing done on tumor? I would want to know this stuff in order to know the logic behind which chemo is being tried.
I would also want to know about cyber knife, or protons to the tumor beds, and hyperthermia targeted to the tumors.
0 -
momskids..
The main question I would have is has it grown or this a isolated lesion . Why was not this second treatment done initially as how do they know this is what will work would be my question. Can someone go with you to be a ear and to help in listening . Maybe a second opinion and get the original xray to them? Why did the tx not work and what has studies shown in this. Does this Oncologist have good history with TNC as that is important too and working with a good team. Only questions I would come up with. You need to maybe look up these new chemo plans and ask in this forum about them. I do not know anything on them.
Get copies of all your results and try to see what is what with grade and any pertinent info that would assist you to get informed and be proactive in your care on this and concerns.The DRS need your questions, and you can find good good support here and look under this new chemo plan as a topic maybe.
Please keep me posted here. Just try to stay focused and take one step at a time.
Hugs,
donna
0 -
That is a very good news for TN like me. Thanks for sharing.
0 -
Totally freaking out. I finished all my chemo a month ago and the tumor was no longer palpable. Went today to have the radioactive seed placed. They did an ultrasound first to see if they could see the tumor. The technologist could see a "wisp" that was so small they placed the seed using the mammogram and the titanium chip. The technologist said she has only once seen "nothing" show up but she has had lots of pcrs with a "wisp". What are your experiences? I know there isn't anything I can do and I've done all I can. And something obviously has to fill in the space where the tumor was but ... still freaking out.
0 -
I have no info to give you n this wisp effect found! Do not freak as I am sure when it is all read it will be explained to you and put you at ease. You certainly deserve a good sit down with your Dr and to know it all and where do you go from here as you have had alot occur in last year! Keep us posted!
Hugs,
Donna
0 -
Gmanmom, I had my chemo after surgery, but my mammograms show the wisps, too, and that's several months after my last chemo. I've been very impressed with the radiologist who reviews my mammograms and she expressed no concern about them. The mammogram report mentioned the wisps, but only recommends the usual six month mammogram schedule typical after cancer treatment. Neither did it trigger any response by my oncologist. Cancer is so darned scary, but while acknowledging that I have no medical training, I don't think you need to be overly concerned about this finding.
Lyn
0 -
I'd love to hear a few words of encouragement. I was diagnosed at the end of Feb and am scheduled for lumpectomy next week along with sentinel node biopsy. What follows will depend at least in part on results from those, of course.
I'm careful when I google to only delve into reputable sources -- major medical centers and gov sites, along with a very few foundation-types of groups like BCO, ACS, etc. But the more I learn about TNBC the scarier it is. This from Mayo, for example: "Despite the best treatment plans, five-year disease-free survival rates for women with triple negative breast cancer are about 50 percent, and nearly all patients who develop distant metastasis die of the disease." Really? HOLY SHIT.
I'm not sharing this stuff with dear husband right now. He's a ROCK, smart and kind and even, but he doesn't need to worry about this like I'm starting to.
So again, a few words, please? Thanks in advance.
0 -
MountainMia,
I know that you are new - I'm pretty new myself, having been diagnosed in Nov/Dec 2018 - and this is all sounding very scary, but there are actually very good outcomes to be reported and you will find many of them here on this site. I, like you, am very wary of googling too much and you are right to restrict yourself to those types of site you listed. Even this site can seem biased toward doom and gloom sometimes because this is where people come to vent more often than to celebrate, but there are plenty of people celebrating! You will read many things about TNBC, but read carefully and don't try to compare your situation too closely to that of anyone else - we all have been diagnosed with TNBC, but we are all unique with regard to biographical details, diagnosis details, treatment details, health care teams, etc.
Best advice: Don't panic! Second best advice: Take this one day at a time but with a plan in mind. Third best (though unsolicited) advice: Tell your hubby. Even if you think you're saving him from worry and don't think he needs to know the scary stuff, he probably wants to know so that he can use his rock-ness, intelligence, and kindness to help you through this.
Major bit of encouragement: You are not a statistic!
Best of luck as you start down this path...
Anne
0 -
MountainMia, that figure from Mayo must include women with all stages of cancer. With a small tumor and negative nodes, your chances of surviving 10 years could be close to 90%. Part of the challenge when initially diagnosed is that you don't have all the specifics of your case to put the information you read in perspective.
Lyn
0 -
No one know how long we have only God does. We all plan for a future! Doctors and statistics can be wrong! statistics can be manipulated bcuz in this world theres no way to know all the variations too many variables!
Live and love, keep moving forward..
0 -
MountainMia,
I have been cancer free since by DX 2008 and have had concerns as TNC is a challenge but not one that is different to me these days toward any other cancer DX. I have seen all sides, no rhyme or reason why one has a recurrence or does not. Same stats and all different. Liive life and take care of your stress level. Self care and do what most pleases you as you have gone through alot. I would suggest to not look alot up or Google. When I had a specific questions or concern, coming here was the best in support and sound advice. Always got what I needed here! Stil come here.
TNC is not a life sentence and for me I truly stay faith based versus fear based. We have to in order to stay balanced and in sane mind.! Hugs to you!
Donna
0 -
I am so glad to hear stories like u. It is very uplifting that there is a big hope that TNBC patients are survivor.
0 -
Donnadio, I am so glad to hear stories like u. It is very uplifting that there is a big hope that TNBC patients are survivor. I'm TNBC pt also and joining this forum helps me a lot especially in times when I worry too much. I will have my mammogram next week (6 months after all the treatment). I wish everything is well.
0 -
Best of luck, Librada.
Lyn
0 -
My wife just met with her oncologist today. She'd been on eribulin (Halaven) and was TNBC cancer free most of the time she was on it. She even had a 3 month reprieve from all cancer treatment. Well her last PET scan showed progression, not much but still progression (two spots in hip bone and one at T7 in spine). Dr. said unless they come up with something she'll be on eribulin as long as it still keeps working.
Also said Medicare will soon pay for Foundation One testing. And Kaiser will have their own, in house, mutation testing lab. She did have a Spectrum Test done but none of her mutations had any treatments available.
Bad news but it could have been worse.
0 -
Hi there,
This is the place I always find empathy, support and inspiration!
I ve had my f/up mammogram in Jan (6 months after completing treatment) and it was alright! My BS wanted to see me a year later. I thought its gonna be too long but she's confident.
Donna I think you're absolutely right. Faith based and not fear based!
Love
Hariry
0 -
Hello,
First off, I've never "blogged" before so bear with me. I was 49 when I found a lump in my left breast. July 2018. A month before my 50th birthday. I had just graduated from a BSN nursing program as an RN. I worked 7 months before I found the lump. After all that hard work. Stage 3 Triple Negative. As far as I know, no history of breast cancer in my family. So, I guess I'm a pioneer. I had not been at my job long enough to receive Family Leave. That was a blow. No matter, I started chemotherapy with ac/ and "red devil" and then in November Taxol just kicked my butt. I had allergic reactions to it every time, I did it though. I left work in November and have been unemployed since. Chemo shrunk my (three now) tumors almost 2/3. It worked great. I had a lumpectomy - without clear margins, then subsequently 2 re-excisions. The 3rd was a success. I guess I was dilusional. When I went to have my first set up for radiation treatment to my breast the radiation oncologist noticed "spots" on my liver and sent me for a CT scan two days later. Okay. Great. Now we forego the breast and start working on the liver. A few days later I had a seizure. Terrifying. Went to ER. 3 brain tumors.All small. I did my treatment on that Thursday. Almost 2 hours of precise radiation and my doctor seems confident. In a week I will be starting oral meds to begin with for the liver - Xeloda. I have a son and a daughter and will be doing gene therapy as soon as they send me the paperwork. I live way up north in Northern Michigan and things don't happen fast around here. I have a son and a daughter and I want them to be able to know what they might be up against.
Any others with similar situations, words of advice?
0 -
dkmartens, what an ordeal you have been through! I am so sorry you find yourself here, but glad to be able to welcome you! This forum has a wealth of information and you will learn a lot. Besides posting here, you might want to use the search function to find recent threads about the various things you are dealing with... brain mets, Xeloda, genetic mutations, etc -- for those specific questions. I am sure people will appear soon to help you. Wishing you the best!
0 -
Hello all it has been a while since my last post. In March this yr I did my routine PET/CT screening and they found disease progression, so my oncologist decided to take me off the xeloda. Her plan was for me to start a chemo and immunotherapy regiment.
After countless hours of crying, praying, and speaking with family, I decided to decline the recommendations and go for a holistic approach. I UNDERSTAND THIS ISNT FOR EVERYONE. Since going holistic my WBC has increased from 3.7 to 6.3. My WBC hasn't been above 4.2 since my first tx in 2017.
But overall the disease is still progressing but now I feel stronger and believe if I have to do chemo then I am equipped to fight!🙏🏽. They just found four small spots in the brain. Their suggesting radiation. I have a consult May 10th. Oh also, they finally found out what was going on with my arm, there's a tumor sitting on my nerve preventing movement.
Continued prayers for you all🙏🏽❤
0 -
Hariry,
You keep living life, stay away from stress as best you can, eat clean and enjoy as you are doing all the best that you can!!!
Hugs,
Donna
0 -
Momkids,
Thanks for your update as was wondering how all was since your last post! I am sure, you are dealing with it and as far as I am personally to BC, let alone being TNC, you have to manage it the best way you can and to do it where you feel comfortable. I beleive and always thought if I had a recurrence it would al about how not to destroy my immune system. You are able to see results with your WBC and that is awesome.
I know that we are all doing the best we can having gone through this journey and it is always the thought what will happen if it comes back to another part off our body It s our body and our choice the way we want to manage it. I am sensitive to most meds, allergic to most as well and just know that my body will not be like the next person just because it is a protocol that is stated to do. I am not sure how I would do it if i had to. I get it and bless you and praying your body fights hard and continues to respond postiively as it has this new route.
Hugs,
Donna
0 -
dkmartens,
You are being embraced from afar and sorry for all you are going through. You sound strong and feel your courage! Getting the info for your children will be a great tool for them as it seems too, we have some many ways to get info about our genes etc. I had the BRCA 1 Gene so I not only had a Bil MX but ovaries removed.
You will get great info on this site and know you are not alone. Keep gettiing info on and staying proactive as you are!!
Hugs,
Donna
0 -
I've been in remission on my TNBC for 10 months. My mind is wondering whether I shoulld go back to work. My work is always under stress/pressure and tiring. My disability benefit will be cut off pretty soon. But as days go by, I want to choose life over money. I will look at glass half full instead of half empty. Counting all my blessings around.This forum helps. We will survive TNBC.
0 -
Librada,
You come out of this journey changed or as they call it the new normal! Things that we were doing or felt was important to us prior to BC can be altered and includes our careers. I today honor where I am and what intuitively feels right for me. There is no room to do things I do not like or feel pressed to have to do and especially having toxic people in my life as I use to be there for everyone. You will know what is right for you and you will be forever grateful that you are doing what is right for you!!!
Hugs,
Donna
0 -
hi I read your post and it resonates with my situation in 48 had a double mastectomy stage 2 grade 3 one lymph node micro involved. I am brca 1 positive and so scared of chemo as I have had two major heart surgery in last 15 years worried about my heart. I really want to be able to do all the treatments I hoping I don’t get too many side effects. My sister also battling ovarian cancer 7 years now. I went to every chemo session with her back in the day it was brutal for her her treatments Where for ovarian so I really don’t know if that differs from the breast chemos. Any suggestions? Grateful
0 -
hi I read your post and it resonates with my situation in 48 had a double mastectomy stage 2 grade 3 one lymph node micro involved. I am brca 1 positive and so scared of chemo as I have had two major heart surgery in last 15 years worried about my heart. I really want to be able to do all the treatments I hoping I don’t get too many side effects. My sister also battling ovarian cancer 7 years now. I went to every chemo session with her back in the day it was brutal for her her treatments Where for ovarian so I really don’t know if that differs from the breast chemos. Any suggestions? Grateful
0
