Calling all TNs

rdeesides

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

SoniaL

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.

Connie1230

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

DiV

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!

jenjenl

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

PaulaAtlantaGA

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.

VL22

jenjenl - glad to hear.

Div - you’re in my thoughts.

anotherNYCGirl

jen, - good update, - thanks for letting us know!

diV, - thinking of you and wishing you improvement and relief!!

Be well wishes to all here!

rdeesides

Paula, thanks for the offer. I have a contact number for the trial here too, so I can call her!

Div, I am hoping you are feeling ok both physically and emotionally.

JenJen, good news.

Thinking of you all and hoping everyone is doing well.

R

LoveMyVizsla

DiV, I know you had ACT chemo before. Just wondering about the taxotere. Can they not use taxol again?

PaulaAtlantaGA

I am upset this morning, after getting a call from my breast surgeon about the DMX results from 4/27. After five months of chemo, I have a residual 2 cm cancer tumor in breast, margins clear. When looking at my images pre-mastectomy, she's said nodes looked good. In fact, after axillary node dissection, 2/14 still malignant. I have an appointment next week with my MO who will put me in touch with my RO for 26-30 rads, then follow with Xeloda and maybe trial for Keytruda. I know I'm still stage III, but I am frightened, just now, about the long-term outlook. I know so many of you are dealing with even more than this. I'm just sad to get this news this morning. Left breast, prophylatic, was benign as expected.

Flynn

Div, I hope the rads & chemo go smoothly. I’m sorry that you have to go thru this again.

Paula, I’m sorry about the rough news from your BS. It’s very disappointing to go thru aggressive treatment and still end up with residual. Good luck starting rads and please keep us posted as you finalize the rest of your plan.

VL22

oh Paula - I’m sorry. You must be so disappointed and afraid. I’ve read through all of these TN threads going back years and one lady mentioned that before neoadjuvant chemo, you just didn’t know if adjuvant chemo worked or not. Her point was that so many women go on and live long lives, but obviously they all didn’t get pcr.

I didn’t know my cancer was TN until after surgery so I was devastated that I couldn’t get chemo first. But I think both scenarios can be full of angst. I hate this disease!

It’s great that you will get Xeloda and hopefully a trial.

Hugs.

sylviaexmouthuk

Hello everyone,

I am just popping in to say hello and to wish all of you on the TNs the very best as you go through your cancer treatment. It is so good that this thread is very active and that newly diagnosed patients are getting lots of support and information. I was thinking of Titan today who started this thread on May 2nd 2010, eight years ago today. I do hope she is still well and enjoying life and that she may still be viewing if not posting. I shall never forget you, Titan.

To all of you, never give up and keep looking forward. I am nearly thirteen years since diagnosis and if I can do so can you.

Thinking of you all.

Fond thoughts.

Sylvia

LoveMyVizsla

Paula, my MO told me that only 40%get a pCR, or maybe it was the other way around, 40% don’t get it. Either way, you are not alone and surgery and rads should do the trick.

aterry

I'm catching up on the thread, after a week away. I'm reading everyone's news with interest and well wishes.

Yesterday I had a follow-up with my MO 30 days after last injection on the tap immune trial. There won't be any results for awhile. But it was the first I'd seen my MO since osteoporosis diagnosis. I've been weighing whether to do Prolia--I'm worried about the risk of necrosis in the jaw. She said she'd only had one patient, in 16 years of prescribing Prolia, who had developed jaw necrosis. Still, she said, this is a very bad side effect and not to be dismissed.

One piece of news to me is that Prolia has some benefit for prevention of recurrence and for helping to slow down bone cancer. This is more so with the hormone positive cancers but has some application to TNs, as well. She said they always prescribe it for patients who have mets to the bone. She gave me a scientific explanation of how it helps with bone cancer (something to do with osteoclasts?) but my brain damaged brain couldn't absorb the info. This tips me a little more to the prolia side though I'm still worried about the necrosis.

KittiesWarriors

Hi All!

I'm new here. My name is Kristina and I finished chemo on March 30th and had a bilateral mastectomy on April 24th. I got good news that I had a complete pathological response. I'm kind of in that phase now of "what now?" all I've known for the last four months has been chemo and endless appointments. It's a strange feeling and I was so happy a few days ago, but not I feel like I am already worried about it coming back. I'm sure it's a normal state of mind for everyone, just looking for some advice from TN women who have been through this.

jamorcar

Kristina,

Congrats to you on your pCR! I finished chemo March 19 and had BMX April 11. I also had a pCR. I just need to get through reconstruction, and I'm done. No radiation. No oral chemo. I'm equally excited and terrified. The past six months have been a whirlwind. Not sure what "getting back to normal" even means.

I don't think the fear of recurrence will ever go away, but we can't let it control our daily lives. Cancer has robbed us of so much these past few months. I refuse to let it continue to control me now. Choose joy. For me, I'll control what I can. I need to try to lose 15 more pounds. I'll go for daily walks, eat as healthy as possible, avoid sugar, take a few supplements, drink pomegranate juice, green tea, write in my gratitude journal, pray and enjoy my husband and three children. And remember to breathe.

My MO wouldn't give me stats for recurrence. She just said that a pCR lowered the odds, which are in our favor.

Love and blessings to you.

VL22

Cocooncat - hi to you and sorry you’re here. So great your tumor is responding to chemo! Yes, googling is the worst we can do, but hard not to do it. The worst for me was when I was first coming here and I’d be on a threadreading and someone would be just diagnosed and someone would say “at least you’re not TN” ouch!

But when you look at the legitimate research our prognosis is good. We do all we can and just keep on living. I so look forward to the day when we can believe it was just a glitch!

Good luck to you.

rdeesides

CocoonCat,

Welcome. This could very well just be a glitch, the odds are in your favor. I still keep thinking they made a mistake, even though clearly they didn't. So awesome that the AC seems to be working. It's so hard not to google, I think we are all probably guilty of it. <sigh>.

Rebekah

A4ggy

Hi everyone,

So many positive posts here and I feel that urge to "like" them. Lol. This is such a supportive forum. I was having a particularly bad case of the Mondays and my worries were taking over but I popped in here and read a bit and I feel better. The odds are in our favor and we do have to choose joy. Thank you everyone for these wise words!

I was very guilty of googling, and sometimes still get sucked in, but there isn't anything I haven't read it seems! I try to stay away.

For anyone on Xeloda, did you have elevated liver enzymes?

Have a great day everyone

rdeesides

A4ggy,

I had elevated liver enzymes all through AC and Taxol. My MO kept asking me if I was drinking alcohol, which I wasn't. ;-) I just started Xeloda and am worried about them getting elevated again, but I haven't even finished one round yet. Are you having that problem?

R

A4ggy

Rdeesides, I am. They weren’t elevated during ACT but after surgery I was taking tylenol and they went up and now are up again. My bilirubin is higher too but still within normal. They said if still high next month,I will take time off to see if lower

rdeesides

Which cycle are you on? Gah all these blood tests are so frustrating.

R

A4ggy

I just finished my 3rd round. They are frustrating and anxiety provoking.

rdeesides

Yeah, from what I hear 3rd round is when a lot of people need dose reduction. I will keep you posted if my numbers go up.

A4ggy

what dose are you on? I’m on 3500

rdeesides

4300 mg/day. Kind of high. I am 5'6" and 155 pounds. I'm wondering how long I will make it at this dose.

LoveMyVizsla

For the elevated liver enzymes, milk thistle works to help reduce them. Works on humans, and dogs!

CocconCat, sorry you had need to join us. But, if you’re going to google, this site is a good source, as is Mayo Clinic.

A4ggy

Thank you for the milk thistle recommendation. I'll try it and add it to my list of vitamins