Calling all TNs
Comments
-
Div,
I hate this stupid cancer. So sorry to hear the news. Sending virtual hugs.
R
0 -
Div, I’m so sorry about your news. Sending you positive thoughts. I hope your docs come up with a good plan.
Paula, thanks for your note. I had my first consult yesterday and this doc also does not think that I need xeloda. She says when the residual left behind is very small and nodes not impacted, she doesn’t foresee a benefit. She also thinks my residual amount will notqualify for ongoing keytruda trials. I guess it’s good news that it’s so small. We’ll see what my other consult says.
0 -
DiV
I am so sorry about your news. WE have GOT to figure this shit out- science and medicine are making huge strides but not fast enough. I bet you are feeling this more than most. Was there any discussion about immunotherapy?
Your strength and resilience are no match to this damn disease.
We all stand with you.
0 -
Well said Batesburg. Once you're in this you get so angry and not just on behalf of yourself.
DiV - stay strong-we're in your corner.
0 -
My wife once had metaplastic BC in her lymph nodes (She also had 2 different types of ER+ at the same time; different story). Radiation killed off the metaplastic in her lymph nodes. Just for info, her ER/PR+ turned regular triple negative about a year ago. Last PET scan 2 weeks ago showed most cancers gone and what was left showed increased activity. Her oncologist believes this is tumor flare because you don't get heightened activity without progression. Xeloda seems to be working for now.
Here is a link to a treatment for metaplastic BC. Also, there's a forum on Facebook just for that subject.
https://www.nature.com/articles/s41523-017-0011-0
MikeW.
0 -
Div, so sorry to hear this news - praying your doctors will come up with a good plan to fight this. Stay strong!
0 -
Thank you everyone for the well wishes, hugs and positive words. Cancer sucks! After losing my arm to this damn disease I really thought I beat it, but here we go again. My oncologist says probably a week of radiation then chemo taxotere. I worry so much about the bills. The Clinic has been paying my Cobra and medical Bill's for which I'm very grateful. My Cobra runs out Dec 1st then I have to get my own medical until Medicare kicks in May 1st. I know it will be high due to pre-existing conditions. I just can't win.
0 -
Flynn, good news that you don't need Xeloda! I know that in a way continuing tx gives you some sense of security, but it really is good news that your oncologist is so optimistic! Mine is always the face of gloom and doom. It makes me mad sometimes.
Div, I wonder if you can't get financial aid from a cancer organization? Just wondering.... I am meeting with someone today that heads up a cancer support group here. I will ask her if she knows any organizations that give financial help.
Rebekah
0 -
Mike3121, thanks for your post about what your wife has experienced with metaplastic BC. I hadn't heard the term although I've read many posts about patients who have experienced different types of BC sometimes simultaneous. The BC topic is huge and confusing.
0 -
DiV, did you hear that expletive I just uttered on your behalf? 😉 Stupid cancer!! 🤬🤬🤬😡. We are all here for you. I’m surprised your radiation isn’t more than a week.
0 -
Just had a consult with a clinical research physician and he wants me to get in a clinical trial for Keytruda after I am done with Xeloda. I will have to drive an hour for treatment, but I think I will do it
Rebekah
0 -
rdeesides,I think the treatment is worth the drive.
To everyone, Happy Earth Day.
0 -
rdeesides..that is great about the clinical trial. An hour isn't that bad. I drive into Boston for appointments and it's often over an hour with traffic, but worth it! Do you mind me asking what the criteria is to be a candidate for the trial? I did bloodwork for an immunotherapy trial that I was barely eligible for but didn't have the biomarker.
Thanks!0 -
A4ggy,
The trial is for Keytruda. I can send you the NCT# if you are interested. There are something like 550 locations across the US and it is a phase 3 trial. I do not have the PD1/PDL1 biomarker but the doctor I met with on Friday said I should still consider it, so I will call on Monday and enroll. I don't remember the reasoning, but he gave me a cd of our conversation so I will have to go back and listen. Basically he said there was still a chance it could work for me and that I should do everything I can. He is a very well respected doctor at a research institution and only focuses on breast for the past 30 years so I trust his opinion.
As for driving an hour for appointments... how do you and others handle it? I have a small child that needs school pick up and I don't have any family nearby. I am also working full time. So, If I got a doctor's appointment in the late afternoon in order to accommodate my child's schedule, I have to take her with me. If I get an appointment during the day, I have to miss work for a minimum of three hours since it is an hour each way and then an hour for the appointment. If I get in this trial I may need to be seen every three weeks for a year. I am going t have to figure something out....
Rebekah
0 -
I am 59 newly diagnosed triple neg. IDC Grade 3 . This week I have a MRI, Bone Scan, EKG, Echo and nutritionist . Next week meet with the chemo oncologolist and get port to start chemo. Meet with the surgical oncologist the plan of attack is chem 4-6 weeks then surgery depending on the the brca test and all the other testing what kind then 4-6 weeks radiation.
0 -
llup - Welcome! The beginning is such a whirlwind, but it sounds like you're heading the right direction. Wishing you nothing but the best through this journey and you've reached a great spot for help (or just understanding). I am 7-1/2 years out and doing great. You can do this!
Hugs,
Kathy
0 -
llup,
Let us know if you have any questions! Sounds like you are on the right track. Hang in there... Once you get started it gets easier.
Rebekah
0 -
llup, welcome, fellow Washingtonian! Sorry you had need to join us, but everyone here is very helpful.
0 -
Rebekah- great news on the trial!
llup- greetings - this is a great place. Sometimes this nonsense can be very lonely - I find much solace here.
Hugs
0 -
I had a pelvis xray and just had an abdominal CT scan. I should have results EOW. I'm feeling hopefully since its been less painful this week.
0 -
Best wishes for a rather "uneventful" result jenjenl
0 -
jenjenl - thanks for the update. Glad you’re feeling better.
0 -
Welcome to the group llupp! I’m sorry that you have to join us but there’s lots of good info here. Keep us posted.
Jenjenl- sending you best wishes for good results.
Rebekah- Childcare is tricky, especially when you’re far from family. During the worst of chemo, I used a sitter who picked up the kids. She was a college student who had free time after class. I’ve also used friends. My sons have soccer once a week and one of my friends picks up my kids and brings them to soccer with her son if I’m tied up. Anybody who could help along those lines? Good luck! I also hope your dr remembersto be more positive. Being upfront is one thing but constant negativity is another.
0 -
Anyone on the Keytruda (Pembrolizumab) trial? I can call the trial coordinator but wonder if you can have surgery while on it. If not, and I decide to do the trial, I may have to have my TE's for TWO years. There are a bunch of rules about when you have to enroll in it post Xeloda and I don't think Iwill be able to do the exchange prior to starting the trial.
R
0 -
rdeesides...I'm not on Keytruda, but I did end up having two surgeries (in a ten-day timeframe) while taking Xeloda. It wouldn't have been my oncologist's first choice, but I had complications with my TE, and then my implant and so doing the surgery was my only choice. I did fine, so I'm thinking you probably wouldn't have any trouble doing surgery while doing the Keytruda trial. But yes probably good to get the ok from the coordinator or your oncologist. If your TEs feel like mine did, I can't imagine having them for two years - they were so uncomfortable. Good luck! I hope you can do the exchange as soon as possible.
0 -
DiV, I don’t often post but read frequently. I cannot tell you how much I hated reading what¡s going on with you. Prayers that the bone scan doesn’t show anything
0 -
Hi all , thank you all for the well wishes. Pet scan confirms breast cancer metastasis to lung. Also have an enlarged lymph node in lung but it didn't light up so Dr wants to start immediately on radiation for the positive mass. Start high dose radiation treatment may 11. Will get 3 treatments may 11, 14, 17 then 2-3 weeks recovery then chemo taxotere. Don't know how many chemo treatments yet will know more on 18th when I see oncologist again. Dr said once metastasis fo lungs I will never be cancer free and will probably be on maintenance chemo the rest of my life. Still trying to stay positive and not think about it.
Praying for everyone waiting for results!
0 -
Flow up with results - Xray shows arthritis in hips. CT scan of abdomen shows are small hernia.
DIV, I'm so upset to read your results. I'm hopeful that the radiation will take care of it. Thinking and praying for you. xo
0 -
Rdeesides - My MO is one of many running the Keytruda clinical trials. DM me if you think calling her would allow you to get some answers and cut through beurecratic tape. She's busy but also kind and accessible.
0 -
jenjenl - glad to hear.
Div - you’re in my thoughts.
0
