Calling all TNs

Anonymous

Suze... don't get ahead of yourself. Repeat... don't get ahead of yourself. They'll be plenty of time for that later. For now, take a deep breath (OK, maybe a Xanax) and try to enjoy *today*.

Easier said than done, I know. But try anyway. Remember practice makes perfect...one day at a time... keep breathing... Carpe Diem!

MBJ

Great advice, Heidi!

Babs37

Suze- Are the twinges on the rads side? If so it could be the nerves reaction to the rads........ I have plenty of twinges since I started my rads. I asked and they told me it was normal. Hope that's what is causing yours......... (((hugs))))

Suze35

Okay, now that I've taken my Ativan...

Met with the RO today - not my normal one, he's out of the office.  There are two palpable nodes and he had me scanned to see if they are in the radiation field.  Unfortunately, they are just outside of it.  He is going to add them to my treatment tomorrow and play catch-up, but he won't be able to fully catch me up by day 33.  He recommends finishing out my treatment and adding a week or so for these nodes...

I'll be talking with my MO tonight.  I'm not at all comfortable putting chemo off anymore.  I think I may insist on either over-lapping chemo/rads, or ending rads at 25 and starting.  We'll see what she says.

Babs - unfortunately, the pangs are on the non-rads side.  My PET was clear in April, but I did notice my liver SUV had creeped up to 2.4 (from 1.7 on first PET).  Hoping that was chemo changes.

Heidi - you are right, I shouldn't get ahead of myself.  Ativan is very helpful in that respect, lol.

It is a beautiful day here, and I'm going to sit on my deck and soak up a little Vitamin D.  I'm a realist, and my cancer seems to be a viscious little bastard, so I expect the worst, but I'm going to take this one step at a time.

bak94

Suze35, I am thinking of you. I am glad they are adding those to the rads field so it can kick some cancer a$$. I would be wanting to start chemo soon also, isn't that crazy? Wanting chemo! Big hugs to you. It sounds like you have a great team of doctors. What chemo are they going to put you on? I know you mentioned it before....

Lynn18

Suze35: I am glad you can talk to your MO tonight--I hope those nodes are normal.  Sounds like your RO is being vigilant by adding that to your treatment.  I find ativan really helps me at certain times; I just took one yesterday.  Enjoy the beautiful day, it's nice here also but windy!  (((Hugs!)))

Luah

Suze35, you have so much going on, I admire how well you are handling things. It does sound like your team of docs is great. I agree with the others, try not to get ahead of yourself. And as for liver enzymes, they really can be all over the place, as I've discovered, for very harmless reasons.

Suze35

bkj66 - I am going to be doing Xeloda with Avastin.  I was considering a clinical trial, but it isn't aggressive enough for me at this point.  It is weird when all you want is poison!!

Lynn and Luah - thanks guys.  One step at a time, right??

I did speak with my MO tonight - she called at 9:00, lol.  She agreed that we need to be aggressive, and feels that we can overlap the Xeloda with radiation as it is done in other types of cancer.  We are hoping to have a solid plan in place by Tuesday, but it looks like I'll be starting chemo either June 6th or the 13th.  And we will keep radiating the new nodes. 

She said we can get a liver MRI anytime I want - just say the word.  I'll have her set one up next week I think.  I need to rule as much out for my peace of mind.  Or for treatment purposes. 

It is concerning when my MO keeps saying how strong I am, and that she hopes that if she ever faces what I'm facing, she handles it like me.  I appreciate her words, but it just reinforces the seriousness of what I face.

Onwards and upwards...

Titan

Oh Suze!!!!  Hugging you here..can you feel it sweetie! I HATE CANCER...F''CANCER..I really just hate it and I get frustrated because what can we do..what can we DO?  I hate feeling helpless like this...

My sweetie uncle had his first chemo today...and had a horrific reaction to the first chemo..ended up up being taken by squad to ER..they are keeping him overnight for observation...He is to start another type of chemo in a week..My aunt is freaking because she wants him to do CHEMO now..He is the first person at the cancer center to experience a reaction like this..

Why does this crap happen to good people..I just don't understand this...and I know everyone feels the same way I do.

And maybe I'm stirring the pot here but there are some people on this board (not us)..that are acting like idiots..complaining about people's posts just because people don't agree with their views....I'm sorry..but that is sooo stupid and a complete waste of time.

Sorry..just ticked off here...I need to not read those threads and I certainly don't reply to them...

This is my home

Monisch..hey lady!   I love the fact that you get rehab..that is awesome. and can I ask you something about breast cancer treatment in Germany..you made have stated this b-4 but what treatment did you have?  I know alot of people go to Germany for their treatment (Farrah Fawcett was one)...I'm just curious...I wanted to know what is different than here in the US.

Suze35

Oh Titan, thank you so much. I really DO feel comforted. And I am so sorry your uncle had a bad reaction. I hope the new round goes well for him. Sending healing thoughts his way! I feel like your aunt - give me the chemo NOW!



I've not pondered the why's much on a philosophical level, and I suppose that is my way of coping. I have an unorthodox view of life and death, although I feel it is an uplifting viewpoint that gives me comfort. It allows me to have a measure of acceptance that terrible things happen to good people, that there is a reason, a balance, out there in the universe. It doesn't erase my anguish at leaving my beautiful children and hurting them so deeply...so much that I will fight to the bitter end for every day with them.



And boy, I know the posts you are talking about! There is a specific poster that I avoid like the plague because she is just so vile...I took the bait once, but not again. The other thread a few days ago that upset me was more a misunderstanding, not this ridiculousness that is going on currently. How can some of these people lack basic compassion and empathy?? I like my home here, warm and safe.

Suze35

Serial posting...



I'm feeling schmaltzy tonight over my kids...I grabbed my oldest son's journal (he's 10), and opened it to see if he'd been writing in it. I didn't read much, I swear! But I caught that he is in love with a classmate, and "just can't stop thinking about her". He thinks she kind of likes him. I shut it at that point and just started crying. He is growing up so fast, and he is so so dear and sweet, and handsome, and I am furious that I might not be around to see the man he will become. Or the man my 7 yo will become - he has this huge heart that is so big, it also leaves him so susceptible to anger and hurt. And my beautiful 4 yo daughter, who holds my face in her hands and gives me the most amazing kisses before dancing away.



Shit, this disease sucks. Thank you for letting me blaaaaagh.

Titan

Oh Suze..I like your post..you are comforting..I do realize that we have to accept the way things are....but it doesn't mean we have to like it...it is soo hard to understand the "why" of these things....I mean..why can't we all live to be bitchy old ladies?  I want to be a bitchy old lady so bad..

and thanks for your support of my uncle..who you guys don't even know..it means alot...

umater

Hi all, I am 55 and was just dx with TNBC IDC, 2.7 cm tumor w/some node involvment, apparently considered stage 2B. I am still completing some of tests. My onc suggested I begin with a protocol of 12 wkly taxol and then 4 wks of AC, surgery and then rad.  I may have lots of questions for this group as my treatments progess so I wanted to introduce and get familiar with this process now. 

Teka

Trolls.

Luah

umater: I answered you on the other thread. Welcome to this one!

Suze35

Umater - welcome. I hope we are able to answer any questions you have! Your treatment sounds right for your stage. A recent study has shown that Taxol before AC has a better survival benefit, and 12 weekly is easier to handle than dose dense. Sounds like a good plan. Neoadjuvant gives your doctors a chance to assess your response to chemo and make changes if necessary. Are you getting a port placed? When does chemo start?

Lynn18

umater:  welcome, your protocol sounds just like mine, only I had the AC before the Taxol.

Suze35:  Your posts are really affecting me tonight.  I like how you described your daughter dancing away.  That is such a lovely age . . .mine are teens now.  I know what you mean, I decided early on I would fight until the end to stay with them .. . .

Titan:  I am sorry about your uncle.  I know what you mean about other threads, this one is the best.  My experiences on other threads have never been as positive as this one.  

Does anyone read the TNBC Foundation website?  There is information about a new trial involving a drug called "tigatuzumab" (I know, weird name) and it is for triple negatives.  The trial is funded by Susan G. Komen and the TNBC foundation.  I had heard a lot about the Parp, and it sounds like that one was not as promising, but I wonder about this one. 

Suze35

Lynn - I don't mean to be a downer, my kids are my greatest joy. And 4 is just so wonderful! We joke that Keegan (my daughter) NEVER walks. She skips, jumps, hops, slides, dances, and tiptoes her way around. She rules this house, and has her brothers tied in knots around her little finger. It is as it should be. I smile every day watching them .



I saw that new trial on the TNBC site...if I do end up Stage IV, I'll definitely be interested in something like this! I am also fascinated with the drugs that "boost" your immune system to fight the cancer...cutting edge stuff!



On a good note, I've decided to start my bucket list early, and DH and I are going to start looking for a cute MG convertible for me for the summer. Always a dream of mine!



Now I'm off to bed. Still with hope. Best to all.

Lynn18

Suze35:  You are never a "downer", the way you described your children made me think of mine.  I think it is always a good idea to start the bucket list; I've been thinkiing about that myself.  What color convertible?  I'm thinking red!

umater

thanks for all the responses to my post, I have another question, dx 5/2011, TNBC IDC, tumor 2.7 cm with at least one node, it was suggested that I also join a clinical trail with Carboplatin and or bevacizumab added to the standard chemo, taxol for 12 wks and 4 wks or AC.  I have researched bevacizumab and found they want to remove it from being used for breast cancer and I am not comfortable with this.  Has anyone experienced this trial? Thank you so much

Babs37

Suze- I think the way you are handeling all this is remarkable. Your children are lucky to have such a great mom! BIG HUGS to you...........

Titan- Can I just tell you that I love reading your posts. I always wait to read you before I go to bed. You have a way to tell it like it is but I feel your compassion and honesty and sense of humor too. Thanks for starting this thread. And I too hope your uncle will be ok and that his treatments can continue.

 And yes home is here!!! It's my little haven! I always come here to see how you are all doing. I just LOVE Heidi' s sense of humor too! Even if sometimes bad things happen to some of us, you can be sure that someone is there to lift you up and help you continue the battle. And that's what it's all about. I think all of you here are wonderfull. Thank you all for beeing here even if sometimes things get rough. Love. 

Fighter_34

Hi Umater: My tx plan was TC Taxotere and Cytoxin. I do know that bevacizumab was used in more advanced cases of BC, but I haven't heard whether it's making way or not. Try this Jennifer's blog she used it and she swears by it Jennifer Griffin. I followed her for awhile not so much now. My advise RESEARCH. RESEARCH. RESEARCH.

Titan hang in there w/ your uncle. Sending well wishes. You are right something has to be done about CANCER.

None of us know why we are here dealing w/ this, but fighting over it is so counter productive. Do what's best for you and your situation. As for me I go straight to my ONC and I ask away. I come here to see what other approaches I can incorporate. I avoid DRAMA since it's bad for my situation.

((((HUGS))))

alexanjb

Yes, we need to research and bottom line we need to trust our oncology team to make the right choices or we need to find a different team.  They studied this and research it and we will never know as much about it as they do.  Yes, we live with it, and it is our lives at stake but they dedicated their careers to it voluntarily.  We are reluctant participants to put it mildly and not really at our best or most objective.

Suze35

Lynn - I'm partial to red myself, but I'm not picky .  I've got my eye on a gorgeous little 1973 MG Midget, white, but it's in Michigan...may have to take a road trip!

Titan - I agree with Isabelle, you have such a nice way about you.  I enjoy your posts very much.

Babs - thank you .  I know you can relate well to what I'm going through.

umater - my treatment was 4 DD AC followed by 12 Taxol with Carboplatin.  The platins have been showing some success with TN, and I can tell you that it wasn't too hard on me.  My WBCs hit the crapper at the end, and I needed Neupogen shots the last 5 weeks, but SEs were pretty manageable.  That said, Carbo/Taxol worked very well at first, but my cancer became resistant to it. 

As for Avastin, I will be using it with my next round of chemo in a few weeks.  There are side effects that can be serious, but it is generally well tolerated.  It has been yanked for BC use, but there is a hearing on it the end of June to revisit that decision.  The doctor I met with at Dana Farber explained that the initial trials were flawed - they looked at the use of Avastin as a first-line chemo in metastatic BC, and if it extended lives.  But women with Stage IV go through MANY lines of chemo, and it is difficult to judge the effectiveness of Avastin so far down the line.  She also told me that information will be coming out soon that Avastin has a definite survival benefit for TN women, as our tumors are aggressive at building their own blood supply, which is what the drug targets.

In the end, you have to research your choices and trust your doctors to guide you.  I don't regret using Carbo, even though it didn't work for me.  I am hoping the Avastin with Xeloda does the trick.

bak94

After my ac  Iwill be on taxol/carbo. Does it usually have a good success rate Suze? I don't know much about it. Did you have taxol/carbo weekly? I am having the taxol weekly, not sure about the carbo.

MBJ

Hi everyone!  Sorry, I have been crazy busy and not on here much.  Just some words for all of you newbies:  You will find amazing support, love and laughter here.  Stay away from the negative postings and trolls, as they do not lift or help your spirit in any way.

Suze:  I married late in life and never had children but I can just picture yours and they sound absolutely precious, beautiful and amazing-just like their mom!  Hugs!

Titan:  I am so sorry to hear about your uncle's reaction to his first chemo and I hope that he does better with the second one.  Hugs!!!

Heidi:  Keep the humor coming as it always brightens our days!!!

Germany does alot of experimental procedures (like mistletoe which has anticancerous effects) and some questionable, unproven treatments, too.  They also test to see if a cancer procedure is going to work before giving it to a patient which I wish they did here.

Suze35

bkj66 - the use of Carbo is still kind of new, but a very small study came out last year (I believe) that showed a really good response rate, I believe over 70% of the participants had a pCR. 

Here it is:   http://www.asco.org/ASCOv2/Meetings/Abstracts?vmview=abst_detail_view&confID=100&abstractID=60453

The first 6 weeks I was on it, I literally felt my tumor shrinking away.  But I am pretty sure my cancer is basal, which is more resistant to chemos. I did both Taxol and Carbo weekly, my MO said it would be easier overall.  She didn't seem to think it made a difference if I had it weekly or every 3 weeks (the Carbo).  I think it is definitely promising! 

Anonymous

Some of you may be interested in this shirt. I would have bought it for sure!

http://cgi.ebay.com/Chemo-Makes-Me-Crabby-Crab-White-S-S-T-Shirt-S-New-/220789514780?pt=US_Womens_Tshirts&hash=item336814a21c

TiffanyF4

Suze35- I feel just the same! I have always felt I was put in this earth to be a Mother. I just want to do just that. I get so angry and scared sometimes! However, I have to remind myself often to not let cancer take away what I have NOW. I don't want to be that depressing Mom that never interacts with her kids. I will just do my best for each day!

tracie23

tiffanyF4, I can totally sympathize with you about not being that depressing mom.... I am now that mother that is so confused from all the chemo infusions . My daughter is always laughing at me. I sometimes go to tell her what to do and it comes out in a yell.... I hate that I do that and it hurts her feeling but i happens... I am a very different person from when I started chemo.

Heidi Here is another great shirt and I am wearing it today. From chemochicks.com