Calling all TNs

anotherNYCGirl

VL22, I am sorry that you and your son (and of course, his friend) are having to cope with all of this. Children are very resilient though, and I hope that your son understands that every case is different, and that his friend's mom may not have been caught early, etc etc.

Hugs to all of you

anotherNYCGirl

Teka! YAYYY!! Wonderful update!

rdeesides

VL22, That is so very sad. I really feel for that girl and for you and for your son. It's so hard not to go down an emotional rabbit hole. I swear to god, we all probably have PTSD.

PaulaAtlantaGA

So today my body was marked up for radiation. I've known since I was diagnosed (10/2017) that my likely path would be two sets of chemo, surgery, radiation, Xeloda, and then a possible clinical trial for Keytruda. I've had CT and PET scans before. The technician today was kind. Now I have three places marked on my body, and I'll begin my 28 radiation visits in early June.

Surely we are all entitled to those days when we just break down and cry, and this is one for me. It's been such a long journey, and I'm feeling somewhat like an object with my DMX scars and radiation marks. I'm struggling for the gratitude for my excellent medical care and the support of those who love me. I'm just - today - wiped out. The tears flow and I wonder, "Why now?" But I accept them, and know I will move on when I'm ready.

rdeesides

Paula,

You are not alone. I wish we could all get together and have a group hug. Tears are part of the breast cancer package apparently. Radiation should hopefully not be too bad for you. I got burned for sure, but all in all it was the easiest part of the process so far. I will hope the same for you.

R

VL22

aww Paula - hugs to you. It is a struggle for sure and the road is long. But you’re right - when you’re ready you’ll move on - day by day. The strength we all have really does amaze and humble me.

You’re in my thoughts. You got this!

AgathaNYC

Paula - I had a very similar meltdown the day I was first marked up for radiation. It is completely understandable. It was the most exposed I'd felt in any of the treatment so far. Although the radiation therapists were very kind and gentle I felt like I was no more than a heavy object that was being pushed and pulled. I was face down so really couldn't see what was going on in the room. It felt very strange in an impersonal way. However, those feelings didn't return and I just finished up rads last week. Good luck with it!

rdeesides

Does anyone know about the Olympia trial and/or Parp inhibitors for TNBC? Someone mentioned I should check it out, but I couldn't find it on clinicaltrials.gov. I'm not sure where to look.

Thx,

R

AgathaNYC

Hi, R.

I once asked my MO at Sloan Kettering about Parp Inhibitors and she told me they wouldn't be right for me and my TNBC. I didn't ask follow up questions on the Parp Inhib. subject since I had more questions about treatment I was already getting.

Not that helpful, but thought I'd chime in.

Hope your current treatment is going well!

rdeesides

I think, upon a quick search, that parp inhibitors may be for BRCA + people, which I am not. <sigh>. There is nothing "special" about my cancer and therefore no additional treatments that seem right.

klvans

Paula, even though radiation was easier physically I felt it was harder emotionally because of its impersonal nature. I too felt like an object. It was disheartening. You are entitled to your tears; we all are. It helps if you can from a bond with your team. It can be hard to do under the circumstances but it does help. They don't mean to be impersonal, but the machines, positions, time limits tend to make it so. The most important thing is that you heal. Take care.

anotherNYCGirl

Paula, More hugs coming your way!

We have all had days like those and we surely understand how you feel.

Although most of the dr/nurses/techs/staff that I have dealt with are very kind, my experience on the day that I was marked up (and photographed!) for radiation was awful. The tech was talking to other people as though I wasnt even there. As I lay there naked, with tears streaming down the side of my face, he suddenly took a facial pic (so they'd have to match every time I was there for treatment). I still cringe when I remember the humiliation I felt. He had no clue how his lack of any consideration or understanding affected me.

Here's to better days ahead!!

Things DO get easier!! Keep your chin up!!

Valstim52

Hi Cathy, sorry for the late reply. Thinking ba ck to when we were “newbies” (less than a year from dx, still in treatment etc). I’m reminded when I read the thread now, of how much support we received from those further along in this terrible path.

I don’t visit this thread often, but want to tell all you cry when you want, be happy when you want. Most of all go easy on yourself and your feelings. It does get better. Look at my signature. I’ve been through the ringer so to speak. I still have bad moments, but time is helping. There are complete weeks where I don’t think about b at t all. We are all different, but a warrior survivor of TN told me, the waters get calm again, though you can’t see it during the storm. Words I live by now. It was our beloved Annie who told me those words when on round 2 of chemo.

Val

Valstim52

Just reaffirming what Nycgirl said. Getting on that hard table, being marked up, the chit chat by the techs all is so emotionally painful. I was only 2 weeks from my Dax, so in physical pain as well. I can recommend the starting spring rads for this year . The Mods usually start the thread. It helped so much with tips and sharing with others going through it the same time

LoveMyVizsla

I can relate. I did NOT want radiation, and was very upset about it. But it went okay and was just a step in the process.

I found this article today, on a new TN trial called BEAUTY2. https://medicalxpress.com/news/2018-05-potential-treatment-option-triple-negative.html

rdeesides

LoveMyVizsla,

Thanks for posting the study. I just emailed Dr. Goetz, who is leading it, to ask about eligibility for the clinical trial. :-) I will let you know what I find out. I would like to enroll in a trial after I finish Xeloda, but so far I haven't found a good fit.

Rebekah

PaulaAtlantaGA

LoveMyVizsla - I just got back from my second-opinion medical oncologist who is at Emory University and is participating in that trial. She said the response has been so strong that it may be closed by the time I finish radiation (first week of June). She also said that it would be in place of Xeloda, for me. I'm not sure if that's the trial in general or just because of where I am.

She was also the first to apply the term "high risk" to me, having a resistant tumor and two nodes still malignant after neoadjuvant chemo. It's not like I didn't know that - but it is still hard to hear. I hope I have the option of the trial, or that I can stick it out through the eight sessions (2 weeks on, 1 week off) of Xeloda to better my odds. May we all enjoy this nice long weekend (rainy nights in GA).

NavyMom

Hello to everyone. I am an oldie on this thread. Joined in when it was just on page 3! Yesterday marked 9 years since my diagnosis. And guess what..........I didn't even know it! Figured it out this morning. I was having so much fun with my navyson and his family and friends that I didn't even think about cancer.

To those in treatment, just do the best that you can. Allow others to help you get through this terrible time. Know that you're not alone.

For those out of treatment. Hang on. Things will get better. It takes time to calm the worries and those run away thoughts.

Hugs to all.

PS: Please take a moment to thank a Vet/Active duty military service member and their families. The price they pay to step up to do what they do is heartbreaking.

sylviaexmouthuk

Hello NavyMom,

I am someone who remembers you from page 3! It does seem a long time ago. Congratulations on reaching 9 years since diagnosis. I was glad to know that life is treating you well.

I shall reach 13 years since diagnosis on June 20^th this year and am living normally and happily and am still trying to help people going through their breast cancer treatment.

We are both living proof that there is life after diagnosis.

Sending you my very best wishes.

Sylvia xxxx

moth

Hi, always nice to hear from people who've come out the other side! Thanks for checking in NavyMom, and thanks Sylvia for keeping this thread going.

Yesterday I was thinking again about the plans I had made before my cancer diagnosis: back to school for new career, work for 10+ years, retirement, pensions, savings etc & how it would all work out.

It seems odd to be making such long term plans but on the other hand, I guess I should just assume it will all work out, & that I won't have any recurrences, and plan for the best life possible. There are times though when my mind just freezes at thinking that far ahead. It's a good thing I hatched this plan & put it in motion way ahead of the diagnosis because I'm not sure that I would have had the confidence now to think that far ahead & assume the best.

anotherNYCGirl

Thank you NavyMom and Sylvia for your comforting words, and hugs to you (and everyone here) as we remember the service members and their families on this Memorial Day.

I check this board often, - I dont know how I would have managed without all of you! With much appreciation and BE WELL wishes to all!

VL22

Navymom - when I was first diagnosed I looked for inspiration and you are one of the people I’ve latched onto! Thanks so much for thinking of us and just know I am so thrilled you are enjoying life!

Sylvia - thank you for always helping along us newbies!

Moth - I’m with you - the fear can freeze you in your tracks. I don’t let it keep me from making plans - in fact I’m making more than ever. Michael J Fox said something about if you worry and let fear in and then something bad does happen, you’re experiencing it twice. It stuck with me. I can’t wait for the day when we can all really breath

anotherNYCGirl

OFF TOPIC- not BC related. Moderators, I hope you can permit this, - I am looking for support/advice and this is my go to place. I dont know where else to ask.

Has anyone here had experience with a high risk pregnancy with complete placenta previa? My daughter is in this situation, and she is stressed and nervous as we all are. I am looking for any advice, suggestions, and positive outcomes! She is due in August, and has had 2 episodes of bleeding. She was able to stop it by keeping her feet up, and will go for cortisone injections tomorrow and Wed to speed up the baby's lung development. The hope is that she can hold out until late july and have C section then. She is so worried about the baby, and I am so worried about HER.

THANK YOU for hearing me out, and for any (good) experiences you can share!

LoveMyVizsla

Best wishes for your daughter and grandchild AnotherNYCgal. I don’t have any advice except to say that I had a niece born at 14 ounces and she is alive and doing great over 4 1/2 years later. Hang in there.

Moth, you absolutely should be planning and executing those plans. At Stage 1 you should have an excellent prognosis.

NavyMom, is your son still out near me? We’ve been having some very nice weather for this time of year.

NavyMom

Yes, he is still in WA. But new orders will send him back to Jacksonville, Florida in about 2 months. He is also re-enlisting for another 6 years and will be going on his 3rd deployment this fall.

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anotherNYCGirl

Thank you so much LoveMyVisla. I appreciate your good wishes and good story of your niece!!

NavyMom, thank you for your son's service!

rdeesides

Hi All,

I heard back from Dr. Goetz this morning and I do not qualify for the BEAUTY2 trial because it is only for those who have not yet had surgery.

He did say he has a trial for a vaccine that I may be eligible for post Xeloda. I asked him to send me more information, so when I hear back on that I will let you guys know what I find out.

Just wanted to throw that out there for those that are interested in clinical trials.

NavyMom and Sylvia, thank you so much for popping in to reassure those of us that are still in the thick of it. It means a lot to hear from people who are well on the other side.

Rebekah

VL22

thanks for the info Rebekah. It seems I qualify for nothing because I had surgery prior to chemo. But maybe I could qualify for the vaccine....thanks for keeping us posted. I really stink at finding trial info

A4ggy

Rebekah, is this the immunotherapy trial? I have 4 more rounds of xeloda then I would love to go on a trial. I didn't qualify for immunotherapy, so it will be interesting to hear more info about this vaccine. Thank you!

Also, I love hearing the positive stories! They are so helpful )

Have a great day everyone!

rdeesides

VL22, I hear you. I was so focused on getting the show on the road when I was first diagnosed that I did not take the opportunity to enroll in a clinical trial. I want to kick myself now that I know what I know. There are few trials that anyone qualifies for if they have already had surgery and chemo, but there are some. Hopefully this doctor replies to me, but I think he will given that he answered me in the first place. I'll keep you posted.

R