Calling all TNs

Hi, Gill

Although tripe in chili sauce was very tasty to me, tripe in hot milk and onions sounds very odd, but I'll take your word that it was good. Seeing the blood sausage made is what turned me off as a child and persists to this day; walking into the kitchen and seeing the buckets of blood sitting on the floor as my aunts bustled around cleaning sausage casings while getting ready to prepare it was too much. They made another sausage with ground-up liver and other organs, didn't like it either. The only one I did like was the sausage made from scraps of meat too small to be anything else. The haggis sounds rather like the liver sausage, I would try it, can't promise I would like it!

Susie must tell us about jellied eels, I suppose. It doesn't sound like something I would rush off to try.

Something we all liked after a butchering was the brain of the animal. If you went in certain restaurants you could get a brain sandwich. Beef brains were better than pork brains, I thought. Now I think the selling and eating of brains is illegal because of the mad cow disease, and also very oddly, one of my brothers died of CJD at age 61. It is a horrid and very rare disease, and is related to the mad cow, although he had a form which is called sporadic, which means the docs have no idea why he got it. The only good thing about CJD is that it kills one quite quickly, but it is always fatal. That was a dreadful time.

I hope your PICC line got flushed allright, I wonder why they make such a big deal of it. When my husband had his, it was a matter of flushing the lines before and after each use. That consisted of putting in a syringe of saline before running the IV, after running the IV another syringe of saline and that would be followed by a syringe of heparin. Heparin keeps the blood from congealing in the line, I think. They gave me boxes of the stuff, and we kept up with it.

I hope you are feeling better after having a nice Christmas, and will be strong and ready for next time! Here's hoping we all have a great 2019!

Talk to you soon, love,

Mary

To all here:

Apologies! I meant to post my long rambles on another thread, accidentally put them here, and also there. Can't seem to get them off so here they will stay I suppose!

While I am here, I want to wish you all a very happy New Year, with good health and good luck! God bless us every one!

Mary

volleyballmom

I am close to your diagnosis, though I do not know my K167. I had one lymph node that was cancerous with another couple of slightly swollen ones. Stage 2B. My surgery was two days ago. I opted for lumpectomy, for a few reasons... mostly to have the less radical surgery if the survival stats are the same.

I have had friends with lymphedema and want to avoid that if I can. Also with TNBC you have to get radiation, even with MX. I had a very good response to the chemo... we'll see if they find any live cells in my pathology in a few days. I have done a lot to support myself nutritionally and with complimentary practices, so I think my system is now way less "friendly" to cancer. Plus you can have a recurrence with a MX anyhow... chest wall, scar site, etc.

I think people feel less afraid of recurrence with MX but there are definitely advantages to a less invasive surgery as well. I guess that's why they leave it up to us.

Thank you Santa Barbara and Moth. I never second guessed my decision until yesterday. You girls have talked me down with your experiences. Moth it is so true others don't know and further decisions can be made down the road.

Have a healthy and happy new year. Let's pray for a good 2019.

Sorry to hear that you had such difficulty during such a difficult time. Good luck on your scan tomorrow.

cccmc2 - thinking of you and your scan today. hugs.

the lump was fat necrosis! Yay!

Great news, cccmc2!!! Everyone have a very Happy New Year, and may 2019 bring much happiness and good health to all!

Vickki

I am a liberal arts major, as a disclaimer, but I think I might know why... Median time to relapse means the time at which HALF of the people have relapsed. So, hypothetically, if the study had 20 people with high kinase activity, and 9 people relapsed in 2 or 3 years, but the tenth person was an outlier, and relapsed after 9 years?-- the time by which half would have relapsed would be 9 years. (That's why the low relapse group is "not yet reached" since way fewer than half relapsed.) But it seems odd they did not discuss that if it were so.

cccm2 - TERRIFIC way to start the new year!!

Lets keep the good news coming!!

Hugs and BEST wishes for 2019 to all of my sweet friends here!!

Thanks for the response, Santabarbarian. I took Statistics way back in the early 1980's, but that relapse figure still seems off to me.

Congratulations, ccccmc2! My reduction surgery resulted in quite a bit of scar tissue & necrosis. Although it can present challenges for our doctors in terms of physical examinations, the radiologist did a great job of mapping everything during an ultrasound so we have a baseline in case I notice any changes. I know you must be very relieved!

Lyn

Hey Everyone, Just wanted to say hi and that I am 9 years out from my diagnostic mammogram and doing great! Best wishes.

Jody

Happy New Year. I haven't posted for quite awhile but I just received an update from a company doing clinical trial research for Triple Negative. I'm in the trial. There is a thread just for this trial but hardly any one posts there so I'm hoping this will get wider readership here. This is an update--not amazing results of anything wonderful like that--but interesting, none-the-less.

Below are excerpts from a news release made by the company sponsoring the Tapimmune trial:

"Marker Therapeutics also reported initial findings from its interim analysis of its dose-finding study (Study FRV-002) in patients with triple negative breast cancer, using TPIV200 as a maintenance therapy for patients in remission following first-line therapy. The four-arm study included low and high dose TPIV200 with or without cyclophosphamide.

Of 27 patients evaluated to date for immunogenicity, 26 showed significant immune response to the vaccine treatment. Of 80 patients treated at 11 clinical sites, 11 have shown disease progression to date following treatment with TPIV200."

Finally, our clinical sites have been very supportive of our Phase II vaccine studies in ovarian and breast cancer, and their rapid enrollment is a credit to our Principal Investigators and clinical investigative sites, as well as our clinical operations team. We are pleased with the progress in building our clinical development infrastructure and believe we can leverage that experience to drive our upcoming MultiTAA T cell studies efficiently."

I wish all of you good results and happy times with friends and family during the new year.

I have very good news to report. My pathology was perfect on the lumpectomy i had last week. No live cells. pCR. I am ecstatic!

I have a question ladies, have any of you quit midway of the heavy dose AC chemo and just started on the Taxol or Taxotere? I ask because I am little behind all of you and I want to know if any of you made this decision and are fine. I was fine after my 1st and 2nd dose but this 3rd dose of AC had me vomiting 3 to 4 times a day, cant keep food or liquid down, fatigue, light headed ness, anemia, feeling faint, shortness of breath while speaking. If I speak to someone too long I vomit. They have switched my nausea meds multiple times and still same issue. I had to return to hospital for an IV. I told them I refuse the 4th dose AC because I am miserable and feel like Im on my last leg. Its taken everything out of me. They are trying to talk me out of it saying but your a TN and you dont want it to return. I look at them and think no you dont want to lose the treatment funds. I have to make a final decision next week if I skip it and go straight to Taxol. Will it really make a difference? I am early stage 2A, no lymph, and was 2.1 cm but it has shrunk a little. I am eligible for nipple sparing Mastectomy. I dont plan to do a lumpectomy eventhough Im doing chemo 1st. I want to just get rid of the breast tissue and be done with it. The tumor is towards the back of my breast on side not near nipple. Just want to know your thoughts. I have read of one or two women that have skipped the 4th and they are fine so I dont know.