Calling all TNs
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Pinkpee- Love hearing that about your friend. I'm hoping that I get in for sure.
Titan- Where in Ohio? It would be so fun to meet you. I often drive through Ohio on plant buying trips.
The best thing that happened to me this evening was that I contacted a well known artist named Anthony Ryder who lives in Santa Fe, NM to see if he had any impromptu classes that I could join for a week and I talked with him for a while. Really nice guy. I told him the trip to go to Santa Fe and study art was on my bucket list. He welcomed me and I plan on going out in the next week or two in between my chemo. How exciting to be drawing a live figure for 8 hours a day with phenomenal instruction for a week. I can hardly wait. I'm also looking forward to going to all of their cool galleries. I'm really not sure how I will react to this chemo but I hope it is like the others and not to bad in the beginning. I want to take full advantage of my feeling this darn good. Fingers crossed that they accept me.
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Titan- My son can call out the scores on the computer, but nothing takes the place of not seeing Tommyboy in action.
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Laurajane: I am crossing my fingers and hope that you qualify and if not, do not despair. There are many things we can do to help ourselves and better our chances. Glad you are doing so very well!
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Laurajane - I know you've gotten a ton of info in the last few weeks... but if you get into the carboplatin trial, there's a few of us on here who were also given carb+taxotere/taxol recently. I had a follow up consult with my onc last week and he said that because I responded so thoroughly to that and the taxane that they felt very confident that my risk of re-occurrence will be less, as that has been their practical experience. That was great news. There are no trials where I got treatment, my onc just ordered it and viola, that was my chemo regimen. I don't understand how that happens. Good luck - we're here for ya!
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Laurajane - aha, didn't read til the end, you get PARP too. THat's cool. If you don't get into it, can you still get carboplatin mix for your treatment? I too had a "total pathologic response", with no PARP, but if you can get it all - hey, throw everything at it!!! Happy thoughts to you and everyone else this weekend!!!0
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Laurajane: That class sounds amazing! I found so many special things happened along with my diagnosis. Doors opened, people stepped forward, and miracles happened.
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On that same note - I will never fly any airline except Southwest. During my chemo, I took my family on a well-needed vacation. The flight home had a layover in TN and would have taken 5 hours. I knew I would never make it. I called the airline, but to switch would have cost us $600. I mentioned that I was undergoing chemo and anything that they could do would be appreciated. All 6 of us were on the next direct flight home without any added cost. Amazing!
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wow, Claire! That is great!
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Swift bird- I gained only an approx 3 week remission from Taxol than my cancer started spreading more aggressivly. I think I had 6 treatments total then emergency surgery. I am hoping that the carboplatinin has better results but I was told that statistically others that had this response from Taxol again only had approx. 3 weeks response to the carboplatin. That is the main reason I want this parp so bad. My onc could start me on the chemo mix without parp tomorrow if I wanted but I REALLY want the parp. I've been told thaat most TN's get positive results from Taxol or Taxotere but there are a few like me that don't get the expected results. I would imagine that in a few years they will come up with a new name for Tn's like me that don't have the anticipated response.
MBJ- Thank-you as always for all. You are correct so many positive life changes for so many of us that have cancer doors can really open when we decide to knock.
Claire- I just love what happened to you at the airport. Stories like this put such a huge smile on my face and fill me with complete joy and happiness. I felt similiar talking to that artist yesterday and I plan on flying Southwest. LOL
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Laurajane; That retreat sounds like heaven! There are many additional things you can take to up your odds of survival. If you are ever interested, check out the Natural Girls thread and also check out this link: breastcancerchoices.org. Lots of good info on there.
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Titan- Good Heavens... what a disaster! Glad I didn't have to suffer through it on the big screen.
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Disaster? I'm sorry that you had to suffer but we are smiling here in Ohio...eh well...there's always another game!
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MBJ- I thank-you and will check it out. This is the only thread I've been on maybe time to spread my wings.
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FYI - a fellow July 2009 chemo buddy Lisa (PauldingMom) who is also TN and has posted here occassionally, has just learned her cancer has returned in lymph nodes, brain and liver. I thought we all should know and give her some support.
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Gillyone- Oh my god! That just breaks my heart. They have got to come up with a cure for all of us. My sincer positive thoughts are with her. Damn it this makes me so angry. I feel so helpless and hope my positive thoughts will help. Pauldingmom is an inspriation to us all.
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Gill - thanks for letting us know about Lisa - I used to read her on July 09 while I was going through chemo and posting on Aug 09 (she always made me smile). Send her (((hugs))) and let her know I'm thinking of her.
LJ - your trip sounds fantastic and I know you'll have a great time!!!
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Gilly..thanks for letting us know about Lisa. ya know..this thread is for all triple negs..hopefully, maybe she will come back on here. we need to support each other.
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Gillyone: Thanks for the update on Pauldingmom. It breaks my heart. 0
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Hi Everyone
I have been reading all your threads for sometime and am writing here for the first time. Hello all of you TN's. I am also a TN. Finished two lumpetomies, one infection surgery, started chemo 4 AC, sept. 21 and am starting on dose dense Taxol on Nov. 16th. I am so terrified of Taxol, ladies. I had a 3.3 cm invasive tumor and a c.5 cm I situ, Stage II, grade II. After surgery they are clear by 3 cm. I am so very sick of chemo, the nausea. I am not sure if there is anyone out there like me, I am eating like a pig. It seems that when my stomach gets empty that's when I am wanting to vomit my stomach out. I can't even drink water, water is my worst enemy. I am really suffering, I can't do this. All the eating has made my ab so big it is huge, like a pregnant woman. The nurse had told me that Taxol is much easier, but I have read a few things up here, indicating that it is harsher than Taxotere. The taxol will be a 3 hour infusion. I am not sure I can sit and take the poison in for that long. Even when I write about AC, I have the vomit feeling. It has had such a bad effect on me, ladies. Has anyone else experienced Chemo as bad as I have? I have 4 dose dense Taxol to do, every 2 weeks. i think my Onc. thinks that I am so healthy I can handle anything, but I sure don't want to develop neuropathy. i feel that I just have really really bad luck. Like I read some of your threads, I have always paid attention to my health, eating salads while others are eating burger and fries, always finding this supplment or that, expensive things to keep myself healthy. And then this cancer crap came. The fear of recurrene is so great, as I have already told my family, I will never do chemo again, I would rather die. I just can't do it. I even smell the wig that I wear and it is horrible. someone please help me get through this. How will i take the 3 hour taxol infusion? Please help me. I did not have any positive nodes and my pet scan was clean so am wondering why the onc. gave me dose dense. I have two other TN's in my support group, they did clinical trials, every 3 weeks. I have no family history, insurance denied paying for the blood test, due to lack of family history of any cancer. what do you all think? Should I start with dose dense Taxol or ask my Onc. to change to Taxotere? Anyone with any experience on this subject? Also, anyone eating like a pig, like me? what are you doing about your digestive issues. sorry for the long post. I am so miserable today, 5 days after AC chemo. Love you all and my best wishes to everyone who is going through BC.
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I had CT given at the same time - 4x 3 weeks apart. I guess your Onc does what she/he thinks is best. I, too, never want to do chemo again, but who knows what I would decide if it came down to it. SE are awful, but we made it through and you will too.
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Gilly - thanks for letting us know about Pauldingmom. I'm so sorry to hear this news. I recall Lisa posting on here, I hope she comes back so we can offer her our support.
Welcome Lovelyface! The ladies on this thread are lovely and you'll get a lot of support here. I had Taxotere/Cytoxan every three weeks. It's no picnic but it's definately doable and you will get through it and be glad to did when you get to the other side of the fence. Hang in there...
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Lovelyface: I haven't started chemo, but I've read a lot and tons of people have gained weight while doing chemo. So you're not alone in eating and gaining and I hope that helps a little. As for the Taxol vs. Taxotere, each has similar SE's. I have read some studies indicating Taxol may be worse for neuropathy than Taxotere, but some people have done better with Taxol than Taxotere. I would certainly encourage you to get a second opinion if you're questioning which one to take. Everyone's different with reactions. It looks like I will probably have Taxotere/Cytoxan 4 rounds starting mid November. I'm not looking forward to it either... lots of fear of the unknown... fear of whether it's enough... but getting a second opinion should help which is what I decided to do. So many people on this board have gone through all of these treatments and did very well with them. I'm so happy you're done with AC! I remember reading your posts prior to that treatment too, and here you are on the other side of it... Congrats on that!0
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Gill:
I am sick to my stomach over reading your post about Paulding Mom, but want to also join the rest and thank you for letting us know. I find it so damn hard to believe that this could happen to her. How does this even happen??? I know none of us can ever have an answer, but it's just so hard to fathom that all of this could have been going on and growing so soon after her treatments. My heart breaks for her and for all of us - just goes to show no matter how much we go through, and no matter what our stats, this disease is just an insidious beast that follows no rules. I too hope she comes over to us here on this thread so that we can all hold her up with our arms. Geez, God bless you, Lisa, and God bless us all.
Linda
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Lovelyface,
I hear your heart cry --- you are not alone. This time last year I was at the same point you are now... I had horrible SEs and was not ready to start Taxol. I did 2 doses of Taxol and had very bad and unusual SEs so they switched me to Taxotere and had even worse SEs I'm sorry to say. Some have great success... but I didn't. The onc. decided to stop my treatments. I really had to trust that God knew what was going on and rest in that.
However, Dec. 1 will be 1 year from my last chemo and I am doing well. I even was able to get a haircut last week!!! (Hurray for new hair!) Some SEs do hang on and I was told recently to give myself a year to feel better. I didn't do that, and last year - I over did a lot - even broke a rib (just from painting a cabinet). One of the lasting Side Effects that they didn't warn me about was that bones can be weakened from the chemo! A bone scan showed no bone cancer (which was my big worry) and I healed well, but definitely took life a bit easier after that.
I just think some of us really have a harder time with the treatments than others. But no matter what you are going through now, I can tell you that a year from now, it will begin to fade. You'll remember, but you won't be experiencing the same things.
I will say a prayer for you!
Vickilynn
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Titan- enjoy your victory...
Just remember who's got the most Super Bowl wins...
Lovelyface- FWIW I breezed through both chemo and rads. I don't say that to "brag" (the emotional devastation more than made up for the minor SEs). I say it because you could have the same experience. Try not to get too freaked out about possible SEs (easier said than done). I know I worried about the same things and, in the end, worried for nothing. Well, OK... something... but it's not a given. Focus on the positive. I hated chemo and rads, never felt too conversational during treatment and couldn't wait to be done with it. I had to keep telling myself "Chemo is my friend". Believe it or not I think I actually believed it after awhile. Take a deep breath. You can do this and you will better your odds.
PauldingMom (wherever you are)- you are in my thoughts and prayers. Damn cancer.
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Hi all found out I am on a lottery for the Parp. Drag
. Yup just figured out how to add the smiley face! Kind of fun. They have decided to start the gem/carbo on Wed. Says it can't wait to win the lottery. Although I plan on winning the lottery soon. I guess it is undecided whether I am stage 3 or 4 Ha! with all of my positive lymphnodes they had assumed it had already mets. Well, my positive ass will not allow it. LOL. If I sound a little nuts it's because I am. The rollercoaster our docs, oncs,BS's put us on is enough to drive us all crazy don't you think? Still have my final drain, 3 weeks since surgery but I have to much fluid still 35-40 ML's a day. I'd rather keep my drain until it's time. There is plenty of time I try and believe. Still I had a great day. Today was a beautiful day and looking forward to tomorrow. Start the new landscape job tomorrow. A fun one using lots of cool rare plants. I hope everyone has a great evening.Laura
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AAhh..Heidi..I couldn't even tell you who won last year's Super Bowl..oh wait..it was New Orleans..guess the chemo brain is getting better..at least in football! Maybe!...We in Ohio are celebrating our wins over NO and the Pats..hasn't happened for a long time..we are so used to being the underdog..it's just nice to have a good win now and then..
LJ...just because you have infected nodes doesn't mean you are Stage 4..."they" haven't found it anywhere else have they? So..you are not..Good luck with your new chemo..hopefully it will kill any stupid stray cancer cells wandering around your body (if they are)...I think you will be fine..I really do....
So..anyway..had the doc appts last week...been in a "funk" even tho things were ok..I just really dislike going to these appts..I would rather live in the land of Denile. I like it there...I hate thinking that every twinge etc is mets...sorry..I'm whining..it just that you think you are doing OK..then you see the doc or catch a cold (I have one). ..and immediately you are back "there" again..I don't like it..but guess I need to get used to it..right?
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lovelyface- welcome to the boards and I'm sorry you had to find your way here... The women on these boards are wonderful and you will find that you are not alone in your emotional and physical symptoms. The steriods and/or emotional roller coaster probably have you eating foods you wouldn't normally eat or more than usual. I had terrible SE's from the chemo and it seemed I got every one there was to get. I know you're having a tough time, but you will get through it. (((hugs))).
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"So..anyway..had the doc appts last week...been in a "funk" even tho things were ok..I just really dislike going to these appts..I would rather live in the land of Denile. I like it there...I hate thinking that every twinge etc is mets...sorry..I'm whining..it just that you think you are doing OK..then you see the doc or catch a cold (I have one). ..and immediately you are back "there" again..I don't like it..but guess I need to get used to it..right?"
TITAN- stop stealing my brainwaves! I swear we are two people sharing one brain.
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Wow! Titan, I echo what others have posted here--so sorry to hear about Pauldingmom (Lisa). I will PM her. I have a dear friend going throug it, too. Cancer sucks.
LJ: That is correct: Not stage 4! That means there is hope. Sorry there is a lottery for the Parps. Is there anywhere else you can go to participate?
Finally got to have my PT today. 4 1/2 months later. Guess it's better then nothing. Still fighting so that I can get it until January.
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