Calling all TNs

Hi everyone. I'm new to the forum and wanted to talk to others with TN. I found a lump last September and started the whirlwind of tests. The first scheduled biopsy was canceled by the attending doctor as she said it was an infected cyst, prescribed me antibiotics and sent me on my way. A month later I had another biopsy that actually went through and the results took forever to come back. The first results came back as DCIS. They sent the results to Stanford and they came back as IDC. By the time I saw the oncologist, my tumor had grown twice as big as it was in September. We did neoadjuvant therapy to shrink the tumor and to move it away from my chest wall. I had surgery 2 weeks ago and the tumor did shrink by about half and the cancer was still alive (which really upset me, as I was expecting it all to be dead) and found evidence of it trying to invade my blood vessels and lymphatic system. My full path results are still not back from Stanford. The local report says IDC and DCIS found and possibly metaplastic. I don't know what metaplastic is. My nodes were 0/4, so I'm thrilled about that and my margins are clear. 

I go for my simulation appointment for radiation next week. Not looking forward to that. 

Mine is also Metaplastic.  We have a FB page for just us meta types.  It is a private group and you have to request to be added.  Look for Bena Roberts on FB and she can add you as she is the creator of the page.  It is so helpful as women from all over the world are on there just like here and it is specific to our needs! 

Maggie

Mags thanks for that I will look Bene up.

Mags and Cenri,

A friend of a friend was just diagnosed metaplastic last week and she asked me to see her tomorrow to give her advice. Any ideas, other than the FB page that was mentioned above? She is 4 cm, node positive but not sure how many, weakly er positive, pr hegative, her2 negative. Thanks and best wishes to you both.

I am TN, but not Metaplastic.

So sorry SaraJane, for the loss of your friend. Hopefully one day we will not lose each other because cancer is no more.

Sending love your way

Thanks Meadow and Nettie....Yes. She was stage IV from the beginning...but according to what her doctors were telling her, (so she shared with me anyway)that she would live a long life, no need in worrying about a will or getting her affairs in order,they had lots of drugs to try on her, if one failed they would try another ..no sweat.... We talked every other day, if not every day at least..she was still working a few hours a week...one day she stopped responding, didn't answer her phone when I called...her daughter contacted me and said they had done a brain mri and found several hemorrhages...and as a family had decided to go on hospice care....she died within a few days of that call...I am having a difficult accepting this, understanding how this could have happened so fast.....were the doctors filling her with false hope or was she fighting so hard, determined to beat this thing, regardless of what they were telling her, when there was no hope all along?????  I just don't know...its just so hard....we were there for each other each step of the way..and suddenly she is gone..just like that... 

Sarajane: so sorry for the loss of your friend.  I have just got to believe that the doctors had hope that some form of treatment would help her. Wishing you peace and comfort dear lady.

Wishing everyone a Happy Mothers Day.

placid44...there is not all that much info about MBC out there and some of it is too scary if you are just googling.  On the MBC FB page there are many articles all on one spot.  Even if she joins just to be able to read the articles about treatment etc I think it would help her so much.  There are many long term surviving ladies there too so that is always uplifting...knowing that YOU can beat this monster!

Maggie

Just checking in to say "hi" .   I have four more radiation boosts to go and I'm done!  This weekend I got a little more excitement than I bargined for.  I ate too many dried figs and ended up with a small bowel obstruction.  I've had them before due to adhesions from extensive abdominal surgery.  I could tell I was getting one on Friday, so I crawled into rads and asked them to take me early which they did right away.  Then I crawled over to the ER and they admitted me right away.  There is some benefit to looking like a cancer patient (no hair to speak of) when going to the ER!  I've never seen them get me in a room so fast and seen by a doc.    They put in an NG tube and everything finally resolved itself Saturday night.  I got checked out Sunday around noon....so it's back to rads on Monday.  Fortunately my skin is holding up really well. I didn't even think about it while I had that (painful) NG tube in!  I just feel very grateful that the obstruction resolved itself on it's own.  It requires surgery if it doesn't.

Fiercebluebird, that is amazing about your new test.  I hope that it helps you a lot in the future with new options.

I am curious too Boston, I finished chemo in December, I am still having issues with neuropathy. So you just lost a toenail?!! Curious to see if other have had this delayed side effect, I have read, it can take 2 years for toes to feel normal ,and maybe never....

That is awful news.  My toenails and fingernails hurt like crazy although none have come off yet.

Boston, I finished AC/Taxotere (only 1 rd of taxol) in Nov of 2012. My nails were horrible! Since then, left biggie came half way off, both biggies were like hooves, knarly, thick, discolored, crooked. The smaller toes were also very thick and almost seemed like the skin thickened and adhered to them. I have continued on other chemo's since, but happy to say my fingernails are back to normal. The small toes are also back to normal, but my big toes STILL look disgusting. Only about 1/3 of each nail has grown back in normal so far. 1/3  ugly nail and 1/3 no nail on left, while 2/3 nail on right is still there but knarly. Who knew it would take more than a year and a half to grow back in, and there still is probably months to go yet!

Bluebird, I LOVE that poem! I am an avid birder, although still novice. Last week, My dh and I watched a bald eagle in a nest, then saw it fly into another tree. They are making a comeback in this area, so only in the past few years have we been able to see them. Over the weekend in upstate PA, watched orioles, ruffous sided towhee's,and hummingbirds at my sisters house. My friend reported a small flock of Indigo buntings in her yard! They are georgous! In my dreams of my future, I had planned on moving to a more rural area after retirement and the kids were out of college. I am so saddened that I may never see that in lieu of my cancer that just doesn't seem to want to leave me. I am getting disability retirement early, but the kids are still in high school, and then, hopefully college. So, I retire to my backyard, sit next to the pool and the bird feaders, and hope to see the occasional elusive songbird. And I know when I really miss the nature, I can visit my mom and sisters in upstate PA.

Cat, your log home with acreage sounds divine. Enjoy!

We are having a super year at the bird feeder this summer.  Two pairs of cardinals, pairs of nuthatches, titmouse, wren, finches, 3 doves, and a blue jay so far.  We missed our first hummer and they haven't come back yet though we are still hopeful.

to slv58 and sarajane - regarding eyes...My ophthalmologist told me that my potential cataracts had REALLY become ready for surgery while I was doing chemo, and I had the surgery a year after the chemo was over. It's wonderful to be able to read road signs, (and even the aisle signs in the grocery!) again. I was driving only to places where I knew my way around, because my eyes were so bad. And night driving was downright dangerous. I still have tear problems, this time of year I'm not sure if that is from allergies, or still the result of "chemo eyes".

to mommom (and others) - Nail problems.  It's been a year and a half since my chemo was finished. My fingernails came back to normal fairly quickly (and I did ice pack them during chemotherapy). My big toes took longer, and one of them is not completely right. It's getting better however.

Neuropathy - just a bit of numbness of the fingertips and toes, except my left foot felt like it had gone to sleep at about mile 11 of the half-marathon I did. By mile 12, it was ok...I just kept walking, but it was a weird feeling. I have "restless leg syndrome" and take Ropinirole for that. I think that's related to the neuropathy. I guess I'm fortunate that those symptoms are so mild.

sarajane. I'm sorry to hear of the loss of your friend. I guess you were close enough friends that she would have told you if she knew her prognosis was so bad. I wouldn't tell people anything except my good news all the time I was going through treatments. Only my husband knew how bad it was.  

hi everybody..

read through all the posts and so happy to hear that all are doing well.

in the meantime it was so nice to read through a virtual alumni get together. Must have been wonderful coming back here and meeting everybody.

and yes, i got a bird sitting on my window since ac infusion 2 and i have made sure it is still there. Of late it has begun getting his partner along too!

simple: happy to hear that radiations went smoothly

cocker: thanks for those pictures you keep posting on and off..quite hilarious!

cat, fierce, fighter: thinking of u

jianchi, inspired: didnt hear from u girls since a long time..hope all ok

ally: even i had my 4th ac infusion postponed by a week because of low blood counts, also the dose had to be tapered down by 10 percent. If they would have administered full dose and timely chemo inspite of low blood counts then it might have created any kind of medical emergency. Dose dense regime is a recent protocol. 3 years ago women used to get 3 weekly chemos and the survival rate difference between 3 week vs 2 week, I read somewhere is around 4 percent for early stage cancers. In your case, you completed every cycle fine , just one had to be delayed so the survival rate would not have got affected much. During this treatment ( chemo, rads, hormone therapy) its always Benefit vs Risk ratio which determines decisions.

love and hugs to all...