Calling all TNs

MBJ

Thanks Navymom:  That was at a roaring 20's new years party 2011 and my DH grew the mustache just for the night.

kathyrnn

Hi Everyone,

I'm living back down at my Mom's (which I refer to as the Land Before Time) which has no internet. (Okay, thank you very nice neighbor who didn't secure their linksys, but I can only access it outside up on the stone wall, lol)  I did get an IPhone, so I'm only about 10 pages back on catching up with y'all

Welcome to all the new members and contrats to those with good news.

I've done my 5/12th Taxol and I'm feeling great!  Some neuropathy, but I've lived with it for years from my back injury, so I guess it doesn't bother me much.  Only one rude surprise.  My nurse (my girlfriend refers to her as "dumbass research nurse from hell") told me my hair would "very gradually thin over the first two months of treatment", would be fairly thin during 3rd month, then I would lose the rest when I got the AC.  In 5 days after my 3rd treatment, I took enough hair for several small rodents, a Yorkshire Terrier and a Shetland pony out of my head.  Lost 70% of my hair in 6 days. Thing that ticked me off is that I have a "Shave the Head" party planned and I've now had to scramble to move the date up.  Other than that I'm great.  Not really any different physically than before starting chemo.  Hope that lasts through this round. 

I haven't quite caught up with all the posts but I do have a couple questions.

Suze, I've obviously missed something!  I read your scans were all good, then I saw you're doing chemo again.  What did I miss?????

Several people were talking about SE of joint stiffness, that didn't improve after chemo ended.  What specific chemo were you talking about.?

Thank you to whoever posted the Paula Young website.  I never would have thought of ordering to try and then shipping them back.

Be well everyone!

inmate4232010

Thanks all for the kind words of support.  

As it turns out I am not BRCA +.  I was tested when first diagnosed last year.  I spoke with my onc and he was surprised at the aggressive nature of this cancer given the treatment I had.  My margins were good with the lumpectomy.  I will be having "lefty" removed very soon and will need to decide on having the other one taken as well.  Does anyone have advice/opinion on doing both?  My first thought is yes.  I don't want to go through this again and quite honestly I'm more of a symmetrical kinda gal.

 Thanks again for the support and chuckles Heiditoo.  It was very nice to laugh so hard on such a rough day!

MBJ

inmate:  This is such a hard decision!  I opted to keep one as I have never had problems with this side  and I always had problems with my MX side.  What does your onc recommend?  Personally, I would go with my gut feeling combined with the facts.  Others feel so certain about removing both and that brings them peace of mind.  Call me crazy, but I have never really worried about it happening in my other breast.  I had my one year Mamo/US and my right breast is still clear and always has been.  I don't know if this helps at all but I think only you will know and that you will have peace of mind once you make your decision.  Hugs!

FrancesC

Happy 4th of July to all! Also my 13th wedding anniversary. DH just reassured me we will grow old together.

Anonymous

Greetings!

As many of you already know, I don't post too much in here on the actual subject of BC. I am almost two years out and prefer to leave the meat of the discussion to those going through the experience presently, with the support of those who are further along in their journey.

I prefer to drop in from time to time, skim the posts and add a bit of diversion through funny pictures, written humor, or a peek into my personal life if I feel it may help to lighten the load from time to time.

With that in mind, I have compiled a brief video (specifically for my friends in here) of my recent trip to NC with my horses. I sincerely hope that those choosing to view it will experience a little bit of the splendor behind my hobby/passion.

It was an enjoyable but challenging experience. Trails were steep (with "sudden death" drop-offs), rocky and had many switchbacks my home bred & trained father/son pair had to negotiate. However, the scenery was lovely and the weather divine. The footage is taken by a small hand-held video camera my hubby holds as we mosey along, hence the possible need for Dramamine before viewing!

Enjoy.

http://albums.phanfare.com/isolated/y6k4TOiQ/1/5184411

Babs37

HeidiToo- Beautiful video. It just looks soooo peaceful............

NavyMom

Beautiful video, Heidi.  I admire your love for animals, horses in particular.  I liked the music, too.  Thanks so much for sharing.

Navy

Anonymous

Babs37- It is peaceful.... if you don't mind the thought of encountering another carriage going in the opposite direction and falling off the mountain as you attempt to pass.... no, I'm not joking!

BTW, I found that my achy joints were not as achy while we were up in that cool, dry atmosphere. Something to think about...

I also bought a nice little tripod chair with backrest that is very portable and lightweight. I used it on some of our hikes for a little rest time along those arduous mountain paths. 

Suze35

Heidi - how beautiful!  And you set it to one of my absolute all-time favorite songs *heart.*  Horses are such wonderful, amazing animals, I'm sure you love being with yours and riding.  And yay on the joints!  I bet it was a combo of the air and doing what you loved :-).  Thank you for sharing.

Kathrynn - glad you are able to get on the internet, kinda sorta .  I too am living with my mother (she moved here to help us out) so I know what you mean, lol.  Sorry to hear about your hair though, that stinks!  Mine started to grow back on Taxol, although slowly...enjoy the shave party!  I'm doing more chemo in an attempt to prevent mets (I had a lot of disease left after surgery), although there is no scientific evidence to show it is effective.  There are several clinical trials that are looking at it though, and my MO agreed that I should throw whatever I have at this.  So back to the chair for me!  And bald again too, sigh...

~~~~

I hope everyone has a wonderful 4th of July!  We are going down to Boston for the fireworks, and my oldest will stay down there with grandma and grandpa to go to a Sox game then the cape.  He's gonna have a blast!

pat57

Thanks HeidiToo for the chuckle. :-))) Oh wow...do you ride horses and motorcycles? Way to go! I used to ride horses as a child and teenager...and road on the back of motorcycles...now, I want to learn to drive a motorcycle. My son thinks I've lost my mind...but, I think it's a great idea!

I need to something fun...besidea just fishing...which is what my boyfriend wants to do all the time.

MBJ

Heidi: Thank you so much for sharing-it felt like we were right there on the horses, too!  Beautiful countryside and your horses are just gorgeous.  I grew up riding, too, and really miss it. Happy 4th of July!

jenn3

Titan - thank you for the well wishes.........

MBJ - great avatar!

Just popping in to say hello and let you know that my scans were good.  I am currently on Gemzar/Carboplatin, week one and Gemzar, week two, off on week three.  Overall I'm doing okay, as we know there are good and bad days with chemo, but it's best to enjoy the good days and forget about the bad.

Hope all of you are having a great 4th or weekend if you're not in the States.

Paintingmywaythru

Hi All,

My daughter got married yeterday. It was the most wonderful time. So joyous and wonderful in every way possible. Got a second opinion at Mass General Hospital last week and came out woth same recommendation of taxatere and cytaxan 4 rounds. Has anyone had this?  Seems short for Triple neagative. Don't know. She said I could get AC with Taxol to follow but she would expect the same results as TC. Hard to feel confident. They will do a circulating tumor test prior to chemo. I am still sore form my lumpectomy that turned into 3 surgeries due to internal bleeding. Had an opening of my artwork in a group show today so was occupied nicely this weekend.Since my 3 surgeriesw were Jul8  June 8 and June 10th the surgeon said I shouldn't swim yet int he oceanand here we are at our Rhode Island home wiht eh water calling me.

Happy 4th to all!

I hope everyone can just breathe through the weekend.

Inmate....can only say  triple explicative! I do think there is more than one treatment out there so please hang in there. We are all with you.

Anonymous

Paint- quite a few of us in here have had Cytoxan/Taxotere X4. Sloan-Kettering recommended AC-T as their first choice (12 tx, as I recall) but their second choice was CT.

My local med onc said CT was enough for a node negative early stage BC. AC-T would be "like swatting a fly with a bazooka".

Sounded reasonable. The "A" part really concerned me, with its potential SE of cardio toxicity. I was glad I could avoid it and still be given a Standard of Care regimen.

Anonymous

PS- congrats on your daughter's wedding!

AND, the water will still be there in a few weeks. Last I heard the Sakkonet was still wet...

Luah

jenn3: So nice to hear from you here! I'm glad to hear your scans are good, and hope that chemo combo keeps blasting those mets, with only gentle SEs. 

TifJ

Paint- I too had TCx4. My onc thought A would be overkill. The worst was losing my hair, everything else was manageable. Hope all goes well for you.

mwilliams

I am glad to have found such supportive and informed group as my wife and I face these next scary months.  She had a 3cm tumor removed about a month ago.  At the time, the general surgeon described it as non-malignant because the margins looked clear.  Turns out, it was cancerous and the margins were NOT clear.

We visited a BS and learned the tumor was TN and grade 3.  He examined her and found a suspect node, which he removed along with two others.  It turns out the suspect node contained a 1.8 cm tumor.  It looks like she is facing chemo and radiation (he obtained clean margins in breast).  However, the more I read about TN, the scarier it becomes.  

So, in a months time, she has been diagnosed with a benign growth, then with stage 1 BC, and finally stage IIB BC.  However, it might be higher because they only removed three nodes.  

To make sense of all of this, i have done tons of reading and have really studied the path reports.  However, I still have a few questions.  Would you all please help me with them?

1.  The 1.8cm tumor scares me.  It seems to have spread very quickly and grown pretty fast.  To me, it means there are more hidden somewhere.  Does 1.8cm seem too large to be contained to just the nodes?  I am thinking about asking for an MRI before she receive treatment to hunt down any other tumors.

 2.  I have read that TN tumors respond well to chemo and radiation.  Then I read only microscopic tumor respond well.  Does this mean larger ones do not?  How large is a non-microscopic tumor?  If they respond so well to chemo, why do some many of those with TN experience a reoccurence? 

 3.  It her cancer considered metastatic since it has spread to the lymph nodes?   

 4.  Is it common for TN tumors to receive a grade of 3 with a 9 sub score?

Thank you helping us through this time.  I have been my wife's conduit to information and support because she is just too frightened to read about her tumor.  Rather, she is relying on her friends and loved ones for support and me for information.  I am honest with her, but do not dwell on the negatives.  

Kimpossible69

Hello everyone.  Joining in.  I am starting neo-adjuvant chemo on Tuesday.  I will have treatment every two weeks for 16 weeks.  The first four treatments will be Adriamycin/Cytoxan.  Can anyone tell me what I can expect?  Thanks so much in advance for the info and support!

FrancesC

Dear mwilliams I cannot answer your questions but it is of any help, my lymph node is 2.5 cm whilst my lump was only 1.8 cm.  I had 4 nodes +ve and they have been taken out.  Spreading to nodes does not mean it is metastatic as I have been informed and it is also common for TN to be aggressive, ie grade 3 with a 9 sub score.  What I did once I was dx was to change my diet immediately and I have since cut out all sugars (except for fruits, honey), kept to a low fat diet and for protein I eat mainly fish. I had undergone a lumpectomy last week and as it still hurts I could not jog but have taken to 2 km walks everyday.  

Your love and support is crucial to your mrs now and please take it a step at a time, one day at a time.  Hope this helps.

Kimberly69 - Unable to help as I am on TC and starting next week.  All the best for your treatments.

 

sylviaexmouthuk

Hello Everyone

I just wanted to send greetings your way from all of us TNBCs in the UK and to wish you all a very happy July 4th. Enjoy your day.

I would also like to send belated greetings to all the Canadians on your thread for a happy Canada Day on July 1st.

Good luck to all of you during your various stages of treatment.

Best wishes

Sylvia

mwilliams

FrancesC, thank you for that information, especially the node information.  It puts my mind at ease a bit.  My wife is pretty fit and has always been a very healthy eater (low fat, no soda -wish I could say the same), but is not terribly restrictive with her diet (deserts at night).  I'll look into the diet, but would you send me a link or some direction to help me understand the benefits of it?

 Thank you for your concern about me.  I am lucky to be able to do some daily re-energizing things for myself.  It gives me the energy to support her and our teenagers the rest of the day.   

Anonymous

MWILLIAMS wrote:

1.  The 1.8cm tumor scares me.  It seems to have spread very quickly and grown pretty fast.  To me, it means there are more hidden somewhere.  Does 1.8cm seem too large to be contained to just the nodes?  I am thinking about asking for an MRI before she receive treatment to hunt down any other tumors.

MRI ARE ALWAYS A GOOD IDEA AND MANY (BUT NOT ALL) ONCS DO THEM AUTOMATICALLY. A 1.8 CM IS NOT UNCOMMON FOR TNBC AND MANY OF US HAVE HAD LARGER WITH NO NODAL INVOLVEMENT... AND ARE DOING JUST FINE.

 2.  I have read that TN tumors respond well to chemo and radiation.  Then I read only microscopic tumor respond well.  Does this mean larger ones do not?  How large is a non-microscopic tumor?  If they respond so well to chemo, why do some many of those with TN experience a reoccurence? 

IN THE NEOADJUVANT SETTING (BEFORE SURGERY) CHEMO OFTEN WORKS WELL ON THE SMALLER TUMORS. HOWEVER, MOST ONCS MONITOR THE TUMOR SHRINKAGE AND WILL MODIFY CHEMO IN ORDER TO GET THE BEST RESULT. RECURRENCE IS ALWAYS A CRAPSHOOT, AND NOT FULLY UNDERSTOOD BY THE MEDICAL COMMUNITY. CURRENT THINKING IS THAT TNBC HAS MANY SUBSETS STILL BEING DISCOVERED AT THE MICROSCOPIC LEVEL AND THAT IS WHY THESE OFTEN INEXPLICABLE "LUCK OF THE DRAW" RESULTS OCCUR. ALSO, IT HAS A POSSIBLY GREATER TENDENCY TO SPREAD THROUGH THE LVI & BLOODSTEAM THAN A ER/PR BC. THE BRCA GENE MAY ALSO BE A FACTOR---CONSIDER/ASK ABOUT GENETIC TESTING.

 3.  It her cancer considered metastatic since it has spread to the lymph nodes?  

NO, I BELIEVE THE TERM IS CONSIDERED "LOCALLY ADVANCED"...*NOT* METASTATIC AND, AS SUCH, SHE WILL PROBABLY BE MONITORED VERY CLOSELY.

 4.  Is it common for TN tumors to receive a grade of 3 with a 9 sub score?

ABSOLUTELY, AS ANOTHER POSTER HAS ALREADY POINTED OUT. TNBC IS TYPICALLY GRADE 3 AGGRESSIVE.

You are wise to be the buffer between your wife nd the Internet. There is a sh*tload of scary stuff out there and most of us have read it. keep in mind though, that many of the "results" are based on  outdated studies. TNBC is the hot topic in BC. It is not a death sentence and there is plenty of reason to stay hopeful (albeit) frightened) throughout the journey. It will get better....somehow, we all learn to deal with our fears of recurrence and beyond. You will too.

Keep breathing, and tell your wife to do the same.

Anonymous

WRT Diet- you will find several opinions on the subject. Personally, I was scared into a 20% low-fat, no sugar, all whole grains, etc. eating habit..... *for awhile*.

Then, I got my balance back and said "f*ck it" (I am known for my "language" in here). The benefits of a diet are often the same as for anyone, with or without, cancer. Eating well, exercising, and maintaining a good weight are *always* going to be in a person's best interest. Don't let it scare you into turning your world upside-down.

Many will offer opinions on a gazillion different supplements and health regimens that you may or may not find helpful. Try to maintain a perspective on all of it, and make the choices based on knowledge, not fear.There are no "miracle" herbs, cures, or food to make the beast go away. The best you can do is to learn to live with it so that it doesn't take over your life because then, it wins and will eat you alive and spit out the pieces. Don't let it.

Stay focused, stay strong and before you know it you will be "on the other side looking back". 

I hope this helps. Now, go have some barbecue...

Paintingmywaythru

Just for levity...I am watching hummingbirds, relishing in my daughters wedding and working on the garden.

For a  peak at what I do when I am not at my day job go to www.susanmedyn.com

I have several shows coming up in anyone is in RI, MA or Hoboken!

bak94

Kimberly69, sorry you have to join us! AC can be rough but as most say, it is doable. I just had my 5 round out of 6. days 2-4 are the worst and then I start to feel better. Come on over to the chemo boards to get even more info that can help, all kinds of tips over there.

MBJ

Painting:  I had 6 x TC and my onc also said AC was overkill for me.  I had started with a different BS who recommended 6 rounds but if I had gone to my BS that I ended up with, I would have had only 4 rounds and more did nothing to further shrink it-I just ended up with more SE's from chemo because of this.  My onc is pretty mad about me having any SE's and blames the direction of the first BS.  4 x TC is standard of care here for the most part and AC or ACT is used, too though there is more risk of heart damage.

MBJ

I had to steal this from another thread and share with you: Happy 4th of July!!

 

mwilliams

Oh, thank-you HeidiToo. This is great information.  We will be spending the next two days meeting our "cancer team."  Having as much advanced knowledge is very helpful.  

 I, personally, find myself falling asleep thinking we are doom one night and very hopeful the other.  However, the more I learn, the more optimistic I become.