Calling all TNs

maryna8

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

maryna8

Hi, Sylvia

Sugary treats are everywhere, and at all times. Hard to miss! Now we will be approaching Valentine's Day, so the candies wrapped in green and red will be put all in red and formed into hearts. Funny how pagan festivals become Saint's Days, and those days become only the means to sell little bits of chocolate!

Grocery shopping is to be done around the outer perimeters of the grocery stores, I do venture into the aisles for olive oil, coffee, spices and popcorn. One of my vices is my afternoon salty tooth, it seems every afternoon about 3 PM I really want something salty. I keep a bag of organic, air-popped popcorn handy and snack on that. I don't buy bags of unpopped popcorn because I don't eat it fast enough, it is usually past its' prime long before it's gone.

I will look up Debra (inspired by dolce), I remember her too.

I do venture into other places on this site too, I have posted in several. About neuropathy, and managing life after cancer treatment, and a few others.

The work on my farmhouse is finally starting to look like something good, he has tiled the bathroom and it's beautiful. Could I have opinions please on the following question: do you think the ceiling in a shower should be tiled? Right now he has tiled the shower walls, the floor but not the ceiling. In his opinion it's not necessary. In this house I have 2 showers and they are both tiled on ceiling, as well as walls. Would having bare ceilings with only fiberboard tiles be asking for trouble inside a shower?

Closing for now, I have one more Christmas today, and hope it will start early and be done early. Then on to 2019, which I hope brings health, happiness and serenity to all of us!

Talk soon, love, Mary

maryna8

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

Volleyballmom2008

Good Morning. I got my mri results, my tumers have shrunk significantly with neoadjunct chemo. I have a lumpectomy scheduled for Jan. 4th. I was good with this decision then people keep questioning me why not mastectomy? Now I am not sure if I am making the right decision. My surgeon feels since my BRCA was negative there was really no difference statistically between the two. Any thoughts or advice from anyone i would appreciate. Obviously the people questioning my decision have never been down the road we have. Thank you. Not sure if my stats are showing but I was diagnosed i. June. TNBC, hig k167, small breast lump on yearly mamogram, IDC, spread to one lymph node.

santabarbarian

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.

moth

Volleyballmom, I think people questioning your decision might simply not be up to date on current research about outcomes and overall survival. I think it's important to be able tune out or dial down the volume on questions or advice from people who are not super knowledgeable about breast cancer.

There are very good reasons to choose a lumpectomy over a mastectomy and if your oncology team didn't think it was a good option, they would not have recommended it. A mastectomy is much more involved surgery, more risks of complications in the short and long term. Some women really do need them (or want them - & that's ok too) , and I was and am still prepared to do it if it turns out I need it but I'm ok with my lumpectomy decision (I'm a year post surgery now).

I think sometimes people might make us feel that if we didn't choose mastectomy we're not treating as aggressively as we 'should'. I also think some people underplay lumpectomy surgery; I've had people say things like 'oh you only had a lumpectomy?" as if it's nothing and means your cancer isn't as serious or something. Again, I've found I just have to shrug off people's uninformed input. If it's not my breast surgeon or my oncologist talking, I don't take their comments very seriously.

Look at all the information and remember, you can always have a mastectomy later on down the line if that's what you and your medical team decides makes sense then. I'd suggest you be at peace about your surgery on Jan 4 and tell yourself you can always reoperate later. Once you get a path report and find out about margins etc, you can make another decision about what to do next.

Volleyballmom2008

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.

cccmc2

I had a right sided mastectomy for a rather small lump, but I was misdiagnosed as E+ and had surgery prior to chemo. I was so overwhelmed and undereducated at the time. I don’t really regret my decision to have a mastectomy but I wish I had been better informed. I actually have a scan tomorrow for a lump I feel under my scar site. Praying it’s nothing to worry about. And I wasn’t offered radiation with my mx. Some are and some aren’t. I think it depends on lymph node involvement but not 100% on that.

Volleyballmom2008

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

cccmc2

thank you

moth

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

santabarbarian

good luck cccmc2!!

A lumpectomy FYI for people deciding... I was very fortunate re my lumpectomy. Had surgery Friday, and only needed one pain pill Fri afternoon. Granted my tumor and lymph node were pretty close to one another and near to the surface of my skin, so they might have been not too complicated to remove. But I am surprised at how minor the pain has been.

cccmc2

the lump was fat necrosis! Yay!

santabarbarian

whooooo! awesome

Vslush

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

Vickki

VLH

Santabarbarian, Although much of the Nature.com article you shared is far above my understanding, I found one thing puzzling. Since you're more knowledgeable, I thought you might provide some input. The article speaks to a nine year median time to relapse in the group with high activity in six kinases. With TNBC, I thought relapse / metastasis typically occurred in the first five years and very rarely beyond 8 years?

"whose tumors showed high activity of any of the 6 kinases versus patients whose tumors showed no such activity. The resulting variable (K-high) allowed stratification of the 113 patients into two groups; one containing 81 cases (71%, high activity of any of the 6 kinases) and one containing 32 cases (29%, low activity of any of the 6 kinases). The respective relapse rates were 47% and 6.5% after 12 + years follow-up, and the respective median times to relapse were 9 years and not reached (Log Rank P < 0.001; Fig. 4)."

Lyn

santabarbarian

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.

urdrago71

That amazingly good news, cccmc2! Happy New Year ...cyber hugs

anotherNYCGirl

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!!

santabarbarian

Here's another article I found about sub-typing for those with an interest. Anyone who has had genetic testing of their cancer might find some matches in this article.

https://www.sciencedirect.com/science/article/pii/S1526820918300934

VLH

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

cccmc2

thanks Ladies!! XO

JJ62

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

Jody

urdrago71

JJ62, woohoo Congrats!!Thanks for good news, enjoy seeing inspiring facts for being NED..

aterry

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.

Flynn

Hello, TN friends! I’m running a little behind but I wanted to wish you all the best for the year ahead!

Thanks to those who posted links and info. We took some time to visit family over the holidays but I’m back and planning to catch up on my reading soon.

santabarbarian

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!

Parrynd1

Wooooooo! That’s awesome

HopeBry

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.

santabarbarian

Thank you, Parrynd1 !!!

HopeBry my MO explained it to me as the # of times they need to whack the cancer in a row. Every further treatment makes a small difference. if 2 was as good as 4 they'd give everyone 2.