Calling all TNs
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swiftbird: Thanks for sharing your encouraging story. A 99 percent response is excellent. Hopefully I will get something like that. My last MRI looked good, but my surgeon said we won't know for sure until after surgery. ..that's great you were able to work through chemo also. Good luck with radiation!
LynnB: I am sorry about your diagnosis, but I hope this board will help you.
Norma June: Welcome, sounds like you have the hard part behind you and hopefully will continue to be well.
Everyone's been talking about losing their eyebrows and eyelashes, which is what is happening to me. I went to Sephora today and found something called Browtech by Smashbox that works well for brows. I think the worst will be losing my eyelashes. Not sure how that will look. Am looking forward to getting my hair back at some point!
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Lynne: Swiftbird makes a great point: She was able to do a lumpectomy due to pre-chemo which is the goal. I still had to have the MX, but the chemo just gave the doctors better margins because of my very small breasts and 2 1/2 locations for the tumors would have left me with nothing even with a lumpectomy.
Swiftbird: You are a masochist working through treatment LOL! I used cancer as an excuse to get out of a bad work situation but I usually love what I do. So jealous your natural hair color came in--I went in brown with a few gray strands and came out all grey with a few black hairs so now I am a blonde!
NormaJune: Cancer is the loneliest disease in the world but here you will make many friends and you will always find support. I'm not sure they had a name for TN until recently.
Lynne: Welcome to the group and sorry you have to be here, but you will find alot of support here. I have heard of a combination of TN and inflamatory BC but I don't know much about it. I believe they are both very receptive to chemo. Anywone else?
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Heidi:
So glad to hear your good news! Get some rest now, there is nothing more tiresome than that from emotional worry.
Paulding Mom - keeping my fingers crossed that all goes well.
Welcome to all those that joined us. Sorry you have to be here, but you will get so much from posting here.
Linda
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swiftbird- "not latent hostility"---- you *lashed* out!
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Thanks for your replay..... I have my 2nd round of Chemo this morning.. My Onc. knows and wants to take a look before I start chemo. he thinks its not anything to worry about... but for me its annoying. Its now spreading to my arms. Last night was horrible... Tried with Ibuproin and cold compresses to help with the heat that comes from the Bumps.
I will fill yal in on what he said when I get back.... maybe it will help someone else who might get this reaction from chemo.
Ladies...have a great day !!
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hhfheidi and PauldingMom - How are you both doing my dears. A million hugs and all my love to you. May God shower you with tons of love and blessings today while you are going through this tough time of waiting to hear. As I pray for myself, I pray for all you ladies each day, with my eyes filled with tears asking God for the meaning of all this. A terror so big for women, who are the mothers, who bear children, do they have to bear all the burdens of the world too by going through these difficult terrors.
Ladies, my mom and sister, brother - they all live overseas, in New Zealand and Australia. I just told them about my cancer a few days ago, while I have known this for a month now. In NZ especially, it seems to be that Indian women like myself living there are a little less educated as regards health issues in that while women are given options to choose their treatment, they are not probably reading their reports etc. I originally come from Fiji Islands so I am basically talking about the Fiji Indian women. My sister told me today of at least 3 or 4 women who just chose to do mastectomy, or lumpectomy with radiation. They flatly refuse to do chemo. My mother suggested the same to me, not to do Chemo. I get so confused. And these women are all alive and doing well, not one of them have died to date.
I haven't really liked the attitude of my onc. He only goes to one website, punches in the patient's information and out comes the statistics, of whether to do Chemo or not. I am not 100% sure I want to believe him. While I am TN, there was no nodes involvement in my case and no metasasis seen on the PetScan.
How can I research more - I just don't like the side effects of Chemo and feel that I will die during treatement. Reason is I have very low estrogen (as I can see on the blood test) and I can totally feel it all the time. I am having a real hard time recovering from surgery right now, I just don't feel right, very weak and I know it is because of low progesterone/estrogen.
Oh God, I don't know whether to do Chemo or not. Why can't I just do Radiation and be done with it? Somewhere inside my heart, I just don't feel like doing chemo.
I am not sure whether it is my family talking (the women of New Zealand) who believe more in God than scientific data or what. I had become ready for Chemo a few days ago, and now I am so confused. It is so scarry, especially maybe because I find my Oncologist a little (not sure what?) Everyone says really good things about him, that he is the best.
I am throwing some pretty confusing statements out here, for which I am so sorry, but I am just so confused, so not feeling well and just don't know what is the right decision for me.
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First round of chemo yesterday - whew! Started aout fine, no issues during therapy in the morning. Came home, ate turkey sandwich (BIG MISTAKE) thought nausea wouldn't hit til next day, if at all after all I had meds for it during chemo, and 3 different meds to take if I felt queasy. HA. Thought I was gonna die. Vomited till i peed on the bathroom floor, felt a little better after that, but nausea returned, until sometime around 10pm when I fell asleep somehow. Called onc doc, was reassured it would pass, but nothing else to do but follow anti-nausea routine. Also had terrible headache, would no be relieved by advil. Finally this morning I feel human again, but very shaky. I have red blotches on my cheeks, forehead and neck and upper chest. Wonder what thats all about, I;ll ask later. I have huge respect for you ladies going through this, and now I am one of you. Two more AC's and then 3 Taxols. I'm just checking 'em off.
Hope you are having a good day, love and hugs to you all, thanks for being my shoulder, this stuff SUCKS.
Lovelyface, I know you are contemplating this and I want to tell you even with the horrible side effects I had I would do it again in a heartbeat. I want every edge to get well and stay well. You are younger than me (I think) and have a wonderful life ahead of you. Trust in your doctors and God and you will beat this! My prayers are with you.
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Lovelyface: I'm no expert but usually oncs prescribe chemo for tumours larger than 2 cm (regardless of node status, the larger the tumour, the more chance it has had of "escaping" elsewhere in the body), and especially so in the case of young women with triple negative. Unless you have some complicating medical reasons, chemo is perfectly doable. I know it seems scary, but you, like all the rest of us, will get through it.0
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LOL NavyMom-I gave away most of my beanies to a friend going through Chemo. But kept my Bears one. I'm gonna wear it hair or no hair. My family fights over it.
Off to pre-op. Should be a breeze. Pink Hugs and thanks again for all your support.
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Lovelyface~ I agree with that Luah said... Even ER+ tumors bigger than 1cm get chemo. TN patients get it for tumors smaller than 1cm. The goal of chemo is to wipe out circulating cancer cells BEFORE mets occur. The cells can't be seen by a PET or other scans, they are too small. But, without chemo to squelch then, they can lodge in organs (lung, liver, and brain) and set up shop. You really want to prevent that if at all possible.
As for being spiritual... I'm a scientist by trade but a Catholic by faith. This is just my opinion but I feel like God gives us the gifts to get well. Be it a good oncologist or supportive friends (waving at MBJ) who have researched lifestyle changes, He places these people in our path. I certainly *do* believe that God can heal... don't get me wrong. But, I feel like a whole lot more healing goes on because God leads us to the right people. Does that make sense? Of course, this is just my opinion...
Chemo is doable. It really is. And, in the grand scheme of things, it is a short time of your loooooong life. You can do this, I promise you can.
xxoo
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{{{{PauldingMom}}}} Thinking about you today!!!
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Hi Lovelyface,
I know how scary this is because I'm in the same boat. I'll be starting chemo soon, and it's very frightening. But I have accepted that for me, it's the best and only option to fight this vile disease. Since I was diagnosed, people have been telling me stories about this woman or that, who had this treatment or that. They were trying to be helpful, but they're not experts. I eventually realized that every case of BC is different, and what they were telling me didn't necessarily apply to me. Also, I don't see this as a choice between trusting in God or trusting in science......personally, I want all the help I can get! If your oncologist hasn't answered your questions, keep asking until he does.....or find another one. Maybe then you will feel more secure in your decision. I'll be thinking of you and wishing you the best.
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Hi guys. I'm back. Had first round of chemo tuesday. They are hitting me fast and hard. Gonna do 4 dense A/C then 4 dense Taxol! Get a 3 week break in between. I am wondering does this get harder with each treatment? Cause this one has been surprisingly manageable, of course I'm still taking zofran and steroids! Get rid of those tomorrow! Anyone know what to expect?
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Michele - Well said!!!!!!
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Lovelyface- first of all, NOBODY wants to do chemo....
TN is a highly aggressive animal which usually responds well to chemo, especially early stage, which you are. For me, the *thought* of chemo was MUCH worse than the physical *experience*of chemo. I cried for a long time after that first needle went in. I sat there thinking, "So, this is my life now".
Darn right it was. I wanted to know that I did *everything* in my power to fight this dreaded disease. NO regrets.
Ask yourself, lovelyface... what is in *your* power? I am not as spiritual as you, perhaps, but I did find myself reminding myself that God never gives us more than we can bear.
Perhaps we just think he does...
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lovelyface- on the scientific side...
Adjuvant Online is not the end-all answer for chemo... it is a *tool* for assessing the need for chemo. There will always be exceptions to the statistical "evidence" such tools provide.
Don't count on nodes or early evidence of no mets. I know this is scary (remember, we've all been down this road) but this fact just underscores my earlier statement about TN being a "bad animal to have" as my oncologist said.
It has a well-documented tendency to skip nodes, and go straight to lymphovascular/bloodstream routes. THIS is the reason many oncs recommend chemo. Size is still a factor, but it is becoming less of one. It's the cell microbiology that is really being focused on in today's oncology studies.
Remember to keep breathing...
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Lovelyface: I agree with everyone above! When I was first diagnosed with BC I thought chemo was an extreme measure but once the facts of TN were laid out before me, I knew that it was the choice I had to make. I am not very spiritual however I agree wholeheartedly with Michelle, amazing people were put in my path to help me along here on this site and everywhere I turned in my life, when I sought help, help was offered. You want to avoid having mets and chemo is how you do this. I cannot say this enough, you must listen to yourself and not to family or friends in this matter. Your BC is unlike anyone elses. Get three opinions so that you are secure in your choices. If something is truly bothering you in your gut, then listen to it, do your research and do what you need to do to fight TN. Chemo was a breeze compared to my surgery but now it is all just a memory even though I stood in your shoes in September of last year. Be strong, you can get through this.
((((PauldingMom)))))) Good luck today! We are all thinking of you!
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Thank you all you wonderful, beautiful ladies. Believe me you are such an amazing help right now for me, words fail me. I am going to meet with the Chemo nurse in half hour who will explain the whole therapy to me and my family. I love you all so much. May you be blessed in all your decisions and results today. You all have helped me heaps and heaps today. I look forward to Chemo now, I really really do.
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Lovelyface, keep in mind too that in the U.S., we're on the cutting edge of treatments and meds for side effects. I was likewise dreading chemo - the thought of it freaked me out more than the actual doing it. Wasn't nearly as bad as I imagined it. I hope that helps... your family will support you, I suspect, especially if you reassure that you have the best and latest treatments available to you, and triple neg isn't the run of the mill BC so it requires different approach.
barbbasile, if you can, maybe talk to them about ativan (helped me, although made me a little more goofy) or emend. They put me on compazine which I took my first round, which was okay. Then i started taking ativan the rest of my rounds - not a lot, but for breakthrough on top of compazine. Then the last 2 treatments, when SEs were getting a little tougher and I took advice of other ladies on these boards... I asked for emend, which is expensive, but worth it (which is why they don't immediately prescribe it but will in many cases if you have severe breakthrough, like it sounds you had already). Sorry about feeling so oogie. I had dry heaves once when I didn't stay on top of my comp/ativan cocktail... that sucked, so I feel for you and your SE experience this week!!! {{{{feel better}}}}
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lovelyface- when I had that little break down when I received my first chemo I kept repeating to myself "chemo is my friend, chemo is my friend".
It's not a friend any of us would have chosen, but in the end it may just be the friend who saves your life.
Not bad for the beginning of a new "friendship".
Breath, exhale, repeat...
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Hope you guys like pink elephants...
This is MacFry, elephant extraordinare. He goes everywhere with us, including his sidekick Baba Looey. In his satchel he carries an emergency peanut.
Doesn't everyone?
Civil Disobedience...
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OMG!! You are all too great!! Been gone just two days with work and have soo much to catch up on!!
Heidi - You are too funny - love the elephant! So happy about your news and Happy Beleated B-day!
PauldingMom- Prayers going out to you and wishing good thoughts!
NavyMom - Are you from Wisconsin? I see you live in ILL. and I am a total Packer's Fan!!! Go Packers!!
barbbasile - I would ask for the emend!! I did the same thing you did although it was a sub!! Very bad night and had to go back next day for fluids! The next AC I got emend and did not get throwing up sick again - helps a lot since there are so many other SE's we have to deal with.
Well I made it through the first long day of inservice and open house then off to a second day of inservice and survived!! Very tired tonight but tomorrow I can hopefully sleep!!
You women are soo strong and caring it is a relief and pleasure to be able to come here for support and talk!! THANKS!!!
Kelli
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Pennyfarmer - glad to hear that you are doing good with your AC. I found that I got a little more tired with each AC but I worked full time through it all with the exception of the day of treatment and about 1/2 day off the day after. Overall the Taxol is easier for me than the AC. I have had some bone pain, but no neauseau and very little fatigue. Best of luck and I hope you keep doing well.
Jen
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Emend worked well for me. I only had two maybe three bouts of nausea that caused me to get sick. It's expensive, but well worth it.
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I used a combo of compazine and Zofran. Both pills every 6 hours for 3 days after chemo. Worked like a charm. I have 22 extra pounds to prove it!
Kad22: I married a packer fan 25 years ago. We have been to Green Bay a few times for games. I absolutely love That town and the people there. We have also gone to Soldier field when the pack played the bears. And the chicago fans were terrible. "ladies" flipping us the bird as we got out of our car with our packers jerseys on. My son was 12 years old at the time. Things got worse once inside the stadium. Some very large man actually tried picking a fight with my son. It was ugly and uncalled for. What a dufus. Anyway. I am signing off now to go catch some of the preseason game. GO PACK GO
Thinking of you today Paulding mom---
Navy
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Barbasile..yes..definitely ask for the Emend..I probably shouldn't say anything but why should I stop now...you should have had the EMEND for your first chemo..I'm sorry but WTF. I paid $60 each time..your insurance should pay alot of it...my cancer center said that if it was more than that you could check with them and they would find ways to help out...I still felt a little bit queasy even with the Emend but took the companzine.
Bottom line is...in this day and age with all of the medical advances with chemo.YOU SHOULD NOT EVER EVER THROW UP!...That is wrong.
Remember this lovelyface..ask for the emend if they don't offer it to you!
Hey Paulding Mom..how are you doing?
We are also OSU Buckeye fans...We have season tickets but sell alot of them...We gave our son our Michigan-OSU tickets this year..he will be 20 years old and going to his first OSU-Michigan game ever...we told him that it was a privilege..not a "right" to go to that game...
Navy Mom..that is bad when fans are so nasty...we went to an OSU-Penn State game a few years ago and we heard the "f' word tons..they would say F' you and we would just agree with them..you had too...we went to Happy Valley a year ago and people couldn't be nicer..not sure why..do you think that maybe it was because it was my first outing "topless"? we actually got to go down on the field and stand with the OSU players...it was amazing.
Oh..and I'm a Cleveland Browns fan! But alot of us in Cleveland area like the Packers too! We like our cheese! Not sure about Brett Farve though..kinda off BC but man..either retire or NOT...I think he just doesn't like to go to practice!
Sorry to rant but dang it..it just isn't right...when these drugs are available and we are not offered them...
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A picture is worth a thousand words...
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Titan -- too funny about Farve!! Yes I think he doesn't like practice!!! ;-)
Navy Mom - Fans can just be nasty! Hope we are better up here in WI. but because tickets are soo hard to come by I have only been to a Family Night pre-season game and those are always fun and great because kids can enjoy too!
Just had a whole inservice on Character Ed. and how people are changing soo much and not using their manners!! Hmmm.
Heidi - my best friends who live right next store are Patriot fans - booo!! ;-) Although, Tom Brady is nice to look at!!
Kelli
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Feeling fabulous yesterday great today on 2 hours sleep last night. A little manic maybe. Had 2nd taxol yesterday something about it keeps me up for about 48 hours and then I crash. I might try the sleeping pill they prescribed but I get so scared of the side effects when I read all of that. Sleep walking, driving while a sleep etc.My boyfriend is taking me shopping tomorrow to buy some new clothes I've lost 18 lbs since May. I'm hoping my wieght stabilizes now that I'm on Taxol. Accupuncture has indeed helped me in many ways. I'm hoping the kidney pain doesn't hit me tomorrow like last time.
Jenn3 & Swift birdDoc says I can try herbs for hotflashes but recommended Effexer says it would help with the hotflashes better. It's also an antidepressent which might help with my sudden unexpected occasional bouts of cryingfits in grocerystores and yoga classes.
Kad22- Congrats on #8
HHheidi- Happy belated birthday and great news. I'm sorry you had to worry what stress.
jenn & Lynn18 Onc told me yesterday her new plan for me was DDac (did) Taxol 12X, surgery, rads and more chemo (carboplatinin). First I heard of this plan. I'm only on my 2nd taxol and feel a difference in the decrease of my B tumor, no phisical change in Lymph yet. I hope she will reconsider her plan and like MBJ my cancer is completly dead when I have surgery.
Cathy559 - I had unexplained pain in my breast also and doc said it couldn't be cancer because cancer doesn't hurt. Ha! two months later agreed to see me and dound out it was stage 3 with lymph invasion. Now my right breast has been hurting the same way for a month and Onc says she has never heard of cancer jumping to the other breast in this stage and not to worry. I requested an ultasound yesterday and she said it wasn't necessary. I hate it when people say don't worry ecpecially when its the doc. and they have been wrong in the past. I understand the rollercoaster ride which we all do. This site has been so wonderful and I hope you receive the same support that I have from all of these wonderful ladies. I have had so many questions answered and it is the shared experiences that have also really helped.
Congratulations Summer
Lynn18- My hair started growing back fine baby white hair last week 3 weeks after final AC I was afraid the chemo wasn't working. I guess when my eyebrows and eyelashes start falling out from Taxol I'll know it is. Red swollen balloon face and sunburn look on chest after AC for two days probably from the steroids. Then went away.
Pennyfarmer- I did 4DDac and just started 12Xtaxol.
Heidi - Love the elephant.
I hope you all have a fabulous week-end. It's finally cooler here and can't wait to go out and play in my neglected gardens.
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Laurajane: Because I have heard of cancer moving to another breast, I would seek a second and third opinion. I didn't push when they decided a year before my diagnosis that what they saw on an ultrasound was nothing and those same nothings are where I had cancer less then a year later, which I found myself in the form of a lump. I went to alot of support groups when first diagnosed and this is how I found out which dr's were reputable, where was the best place to go, who did the best plastic surgery. I hurt on and off for 3 1/2 years before my diagnosis in my MX breast.
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