Calling all TNs
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Minxie......I have been rediagnosed with a local recurrance after AC, Taxol and radiation. Since I was rediagnosed immediately after completing treatment they deemed it ineffective and moved me onto new chemo drugs. With you being 3 years out from rediagnosis that might not be the case. I have a friend who is also TN BRCA- that had been rediagnosed as a local recurrance and they gave her AC again since it was some time away (1 year) from last diagnosis. There are a lot of good chemos out there to battle this little bugger so don't worry, they will give you another cancer kicker that will get you back on the road to NED. I have benn thinking about you every day and wish I could give you more support (in person). Let me know if you want to know the other drugs and details of my rediagnosis.
Lots of Love to you my dear!
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Fighter......exactly "what is normal?" I never really thought of myself as a control freak but maybe that is what I want right now. Control over my feelings, my body, my mind, my schedule. I just want to yell......Get off me! to everyone, all the time. If I had tourettes I could just swear randomly, all day, every day. That might make me feel better. Now I'm just rambling, sorry.
xoxoxo
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Inmate - so sorry that this chemo regime is not being so kind to you. Two years of treatment is a long time - I had 20 months so I have a pretty good idea what you mean. I am concerned about you, why do you have to have your chest drained every few days? Do you mind sharing the details of your recurrence? I ask because I'm going for a PET/CT tomorrow, elevated tumor markers suggesting trouble brewing again.
Cocker_Spaniel - I believe Inmate is correct that Abraxane is often given when there is a reaction to Taxol. It's the mixing agent that causes the reaction, and Abraxane's is known to be less likely to cause a reaction.
The best thing that happened to me today is lunch with my best friend and fun shopping for my trip to Paris - which begins two weeks from tomorrow!!!
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Just dropping in to say "hi". Haven't been in here since I posted that CA photo; haven't read all the posts in between either. Hope everyone is doing well!
Oh yeah.... wow, totally new format in here. Hardly recognized the old place!
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Inmate, you're allowed a little rant once in a while. Go ahead and scream, we hear ya! (where were you skiing, by the way?)
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Best thing that happened to me today? Oldest son brought his cap and gown to show me. He is graduating - ceremony on Saturday morning - with a BA in art after being a "full time" student for six years. Finally!!!! Now he just needs a job.
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Inmate baby..you swear all you want...I think we can handle it here..go for it girl...I use to think that using the f' word was bad..but you know what..it describes what we are going through here...it's like the ultimate bad word...in fact..I use it alot..I don't care...f..it...lol
Crap Minxie...this just sucks...glad it is local if it had to happen but crap that it had to happen at all..
so anyway...Happy Mom's Day to you all..whether you are a mom or not...seriously though...a phone call from my kids telling me that they love me ..not just on Sunday but any day is enough for me....
Gah..I just had another friend diagnosed with BC..she is having a lumpectomy on Tuesday....her tumor is 3 cm..put er positive......
Love to you all..I would appreciate good thoughts since I have a mammo on Monday..I don't feel anything but you can count on my feeling myself up for the next 72 hours...hope I don't get arrested..ha ha
Cocker...sorry about the taxol reaction...geez...they will watch you a little closer the next time...make sure they are carefull with you dang it...
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That is great about your son Gill!
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Haven't been on for a few days.
Minxie... so sorry hoping it is a local reoccurence. HUGS!!!
KS..great news.
Caroline 21..I was terrified when I joined this chat. It has been a wealth of support, caring, love, and information....and many many laughs...yes, you will laugh again.Get the best oncologist you can get and know there are many many treatments for us TN's.
Clowngirl...hoping things are going as best as they can.
Inmate...well enough is enough...of course a meltdown...you are welcome to many more. Some days things just are lousy.
Please send a prayer out for my cousins husband who is in an induced coma post stem cell transplant and has been hospitalized in Boston for 14 weeks. They are from upstate NY and my cousin is holding up but her poor husband appears to be rejecting his own stem cells and his chemo has led to him being on dialysis every day. He is in the ICU and the doctors said they have only seen 2 cases where the body rejects it's own stem cells. She is barely able to keep it together with bad news piling on top of bad news. Fortunately she believes in the power of prayer and is praying for a miracle to bring her husband back to her.She has not been out once so Saturday I am going to force her to go to the arboretum with me and take her to lunch. the nurses say she has to take a break andI hope she will. She says she will now but I hope she can give herself a break when I see them.
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Thanks for all of the words of encouragement. I was sprung at around 2:00 pm today. It only took about 30 minutes to travel by wheelchair from one end of the hall to the front doors,(lots of hugs and good wishes from coworkers and my MO). Then probably another hour or so of text messages from friends and relatives.
I am happy for everyone who has good news this week, and saddened and praying for those with not so good news or upcoming tests.
BTW: CANCER SUCKS!!!
Becca0 -
I can't tell you all how much I appreciate your help while I deal with this local recurrence... I feel like a selfish slug not responding to each of you and your issues individually but my life the past few days has been a whirlwind of dr visits, tests, research, planning, phone calls... I do wish the best for all of you, from the bottom of my heart.
Inmate, thanks for all your info. I can so understand your anger and frustration, dealing with this illness for 2 years straight would make anyone pissed! Did they try Gemzar/Carboplatin on you? I am hearing it is a milder chemo and it's importatnt to me to have some QOL. AC/Taxol knocked me flat out and left me that way the whole 5 months. My most horrible memories from that time were being too weak to play with my children...Can't go back to that.
LuvRVing, thanks for your input as well. Yesterday my breast surgeon told me that the chances of BC recurring locally after mastectomy were less than one percent. Damn, I should play the lottery, I defy all the odds.
Update - so went to BS yesterday for consult/MRI. I am very MRI/CAT medical machine phobic. I asked for Valium, popped it at 1:50, MRI was scheduled at 2:00. Well I didn't get my consult until 3:00, didn't hit the MRI machine until 4:00. Which meant I was super groggy for my consult, (hope I asked all the right questions) and then NOT RELAXED AT ALL for the MRI because the Valium was worn off by then and I was just exhausted. I could feel the panic wash over me when I saw the machine, started crying, but I of course couldn't sob during the procedure because you can't move. Every time the MRI started up with those hellish sounds I was silently screaming in my head and all these visions of demons and gore assaulted me (I'm an artist and my mind is my worst enemy sometimes). To sum it up, IT SUCKED.
My BS says she has to have a PS present during the surgery. the problem is that since I had a mastectomy, there is so little tissue left to excise to get clear margins that she has to takeout 2 sq inches of skin, and she's not sure how to get it to close up again. I was saying fine, I don't care about the aesthetics, mutilate me, just get it out, but I guess she's concerned a wound that big would re-open? So I'm trying to get an appt set up with a PS today so he can look at it and see if he'll agree to do it. It's a short surgery, but she says very complicated due to the previous MX and lack of available breast tissue.
I had my first can of Coke since my original 3.5 year DX yesterday. If all my juicing, exercising, and eating veggies has made no difference, what the heck. Maybe Coke is the cure.
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Just received this in Google Alerts: Sure looks real hopeful, especially for those newly diagnosed:
http://web.mit.edu/newsoffice/2012/dual-drug-order-chemotherapy-0511.html
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LRM216-Thank you for the article, looks promising indeed!! I had read somewhere on here, not sure if it was this thread or another (chemo brain) about one gal getting this chemo.0
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Quick question first, I updated the bio info that shows at the end of my post, but how do I insert a quote in there?
*waves Hi to Bernie* Votes yay for laughter.
Cocker - don't be to nervous about your next taxol. If you were having an allergic reaction, it would have reoccurred when they restarted the IV. Could have been some other kind of SE. Just please have what I call a "bulldog friend" with you. That's the kind of friend that will literally grab a nurse and drag them into the room if necessary
Clowngirl - your in my thoughts and prayers today.
NavyMom,- I can't fit gardening into my to-do list, so thank you for the flowere for LJ, Suze, and MBJ.
beljmc - so sorry for the hell you're going thru right now.
Inmate - I have no idea how you have stayed this strong this long. (and all you other ladies going thru relapses). Yours was especially awful Inmate because you didn't even get a break from round 1 before you got slammed into round 2. I know I couldn't have held up as well as you have and I admire your courage. Sending you some red party panties to go along with
those "big shoes"
Fighter - you don't need Tourette's. Just tell everyone it's a SE of your treatment and swear as needed!
LuvRV - have a blast in Paris!
Gilly - congrats on your sons graduation.
Painting - Prayers for your cousin and her husband. I can't begin to imagine the fear and pain they're going through .
Minxie- No "selfish-slug thoughts allowed. Sometimes you have to be in "it's all about me" modes and this is one of those times. Just please keep us updated, like you're doing and enjoy the Coke!!!
LRM - great article!0 -
Kathy, in the profile tab scroll down to signature, then click on edit. add it there.
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This post is just for anyone who wants to laugh today. I know I've mentioned that I'm in back pain again, but I don't think I've told you the story of how it happened this time. (backstory: spent 5 mo. In killer pain from a herniated disk. Had surgery last April with poor results. Got diagnosed with TN, 3 weeks after surgery. Pain was at manageable levels during treatment. Last week of radiation it let go again)
I now live with (I get to visit my home, lol) and care for my 86 yo Mom. Mom can be a handful. She usually does her worst damage when she's trying to "help me"
During one of my last radiation days, the oxygen delivery man was late. I told my Mom I had
to take a shower, and to please bang on the bathroom door when he got there. I got out of the shower and was drying off when I heard what sounded like the rattle of my Mother's walker hitting the kitchen cabinet and a loud thump. I thought my Mother had fallen, so I came charging out of the bathroom. As I started to turn right to go to the kitchen, something flashed in my left eye. I spun around to see the oxygen delivery man looking like a deer in headlights! The poor man was face to face with a semi-bald, fat, middle aged woman with one bright fire engine boob. The poor young man will need therapy for many years. At that point I did a very ungainly 180 degree pirouette and DOVE back into the bathroom. (how I re-injured my back).
After I got a bathrobe on and apologized to him profusely (he was very sweet, said he'd do the exact same thing if he thought his Mom had fallen), I asked my Mom why she hadn't knocked on the door like I asked? She told me " oh, I decided not to bother you". I didn't have the heart to tell here what happened till the next day.
So Happy Mother's Day to all the Moms on here and have faith that no matter what your children's age, you will have a chance to get revenge on them for all their misdeeds someday! **big-a**ed grin**0 -
Thank you Lory!
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LuvRVing.....wow, 20 months. Ugh, right?! I had surgery on the 3rd of april to remove the most recent relapse, skin mets. They weren't able to remove the internal node because it would have involved removing the end of my first rib as well. When they removed the skin mets, my BS had to take about a 4 x 6 inch section of skin and pull up my skin to close. The doctor called it a reverse tummy tuck. Yet my tummy doesn't look tucked. Whatever! He did not insert a drain this time and now when I build up fluid I have to actually go and have him manually drain me. He is concerned that I will actually bust open my incision and if that happens he doesn't think he can reclose it because it is so tight. The last two weeks I have actually been leaking through two small holes in the incision that just don't seem to want to heal. On one hand it's great because it helps to drain the fluid, on the other hand it is not attractive to have a constant wet spot on my non-boob chest. I have been wearing a lot of black lately.
This is the 4th surgery on what is left of lefty. I now wish that I would have just left the skin mets and let the chemo take care of it. I was just so panicked at the time and wanted to have the cancer removed at any cost. Well, now I know exactly what it cost.
Sorry for such a long response to a simple question.
Gotta run and help a friend before chemo. I will come back and chat with everyone.
Minxie.........thinking of you my dear!
Love to you all.
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Kathy- that was awesome!! Thank you for the giggle..
But I would have doen the same thing!! 0 -
Inmate - please don't ever apologise for a long response - we love hearing from you. You are one heck of a strong woman. You already have a beautiful tummy, why would you need a tummy tuck anyway, right? I hope the wounds heal this weekend. The sun and spring is here to heal all of us mothers, sisters, daughters, one and all.
Kathyrnn - that was so funny! You mean completely naked? Sorry, I am slow to catch on. Ha! ha! ha! nice, sweet guy, though. Mom's are so so so very precious, aren't they? They are nothing but next to God. I love you mom.
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Just wanted to drop in and say I am thinking of all of you! I hope you can manage to have a good weekend..
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Lovelyface - that would be b*tt-a**ed naked and still dripping wet!
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Kathrynn, you're lucky u didn't slip and fall right in front of him, thanks for sharing..
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Ok...I'm laughing and crying here...Kathy..gosh..I don't know what to say..the visual is there in my brain....bet that guy needed some oxygen...and hey..there's nothing wrong with naked, bald middle-aged women..we've got experience..right? we can show those young'ens a thing or two..lol
Minxie..hell...drink a 12 pack of Coke if you need too ..I had one today after I read your post..it tasted good. and I lifted my Coke to you girl..
re..mom's day...my 78 year old mom sent me a card..ok..we live in the same town...seriously...but anyway..it was a card thanking me for giving her grandchildren..ok...whatever...I guess I'm glad I did that..but..really???? the thing that scares me is that I AM GOING TO BE LIKE THAT....I know that and it freaks me out
oh..and I don't like this new format either...but I will get used to it.
Mammo for me on Monday..not sure why but I'm freaking..not sure if I freaked one year ago but I'm sure I did....anxiety sucks...and so does cancer....(back at you Becca)...
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Ladies, I need help from one of you and I can't remember who posted it, nor can I find the post. One of you said you were on Metformin 850 x 2. Apparently, I have read the research studies wrong. The one I read said they were testing the minimum effective dose, and they were using 850 mg once a day. To be safe I had my doctor put me on 500 mg x 2. Would whoever posted that let me know where that dose came from, so I can have my doctor increase my dose if need be.
Titan - will be sending you tons of positive energy Monday.
Clowngirl - you're still in my thoughts.
Teka- I'm concerned and hoping you are okay? All your posts have been deleted.0 -
Hi all,Well I'm pretty manic. Right on schedule. What a day today was. About 10 minutes or so after my infusion I had a reaction. My face turned beet red, my heart fluttered, my tongue and toes got tingly, I was dizzy and my throat started to get itchy. Oh boy did that start a chain of events. The nurse took off running, called the MO, about 7 other nurses came running and then she called rapid response. My day involved a lot of extra people. Oh, and my blood pressure went up to 170 over 145. In the end the shot of benedryl made it all better and now I'm back to my regularly scheduled self. Huh! That was fun! Now this was the 3rd time I got erubilin but the first time for a reaction like that. The one thing different is he upped my dosage from 1.2 to 1.4 cause my blood counts looked so good. I guess next week we will go back to 1.2 and add benedryl for good measure. I'm totally with you Cocker. Cancer can suck it!Luah.....the pic was taken at Stevens Pass on the front side of the mountain. I'm already looking forward to next year. Gillyone.....Yeah for your sons graduation.Titan.....I will be thinking of you on Monday. Ah the f-word. My favorite swear word. So flexible it can be inserted anywhere and never seem out of place. Yes, the f word, my favorite swear word. Heiditoo.....Hi back! Paintingmywaythru.......sending lots of good energy your friends way. I hope you are able to get her to take a small break with you.Minxie.....I don't know how I missed your post. I did have Gemzar and Cisplatin and it was an absolute breeze in terms of side effects. Very easy to handle for me. The Cisplatin did require overnight stays in the hospital to infuse because it has to include over 10 hours of extra hydration. It is hard on the kidneys. Are you sure that is what they are going with? I also had a combination of navelbine and methotrexate along with 5-fu and lucovorin (which is another version of Xeloda). Those were also easy to tolerate for me. Right now I'm on erubilin and this one is testing my patience after today. Hopefully that was just a one-off . I still have three more to go and this drug is supposed to be very effective for us TNs.Still not tired so you may see several posts from me tonight. Love to you all!0
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kathymn- I've been on the metformin clinical trial since april 2011. The dosage of the trial is 850mg X 2 a day on my trial information sheet. There are 2 threads on here called "Metformin- Anyone on this trial?" and "METFORMIN AND BREAST CANCER" that can give you additional info. I think that 850.mg X2 a day is the dosage of Metformin for everyone on the trial.
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Inmate - There's nothing like a reaction to rip your day apart. Freaky, fucking freaky man. I thought I was going to die. Couldn't see a thing, but my BP went really low and I'm sure someone was sitting on my chest causing the red face!. Mind you my BP is always high anyway but scary as you were girl. Know exactly how you feel. Scared shit about the next one this coming Wednesday. I'm going to take a bucket full of Diazepam before I go otherwise they can shove this chemo up their arse cause I've had enough. Its ok for them to say they thought it was an anxiety attack but freaking hell never had an anxiety attack like that before and I feel 100% they are wrong. I love the F word too right at this moment. With you all the way Inmate.
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Morning Ladies,
I had a lot to catch up on so I'm sorry if I miss someone.
Welcome to the new ladies, so sorry your here but you couldn't have come to a better place. You'll find, wisdom, compassion and support from these ladies.
Mixie, so sorry it's a recurrance but only local, that's a positive!
Hoping your surgery went well Clowngirl.
Thinking of you today LuvRVing. Praying for good results
KS - Yay!
Bernie, glad to see you back. I feel the same way, I've missed almost a week and I start to worry about all of us and need to know what's going on.
Beccad - Glad your out and feeling better.
Inmate - You are an inspiration to me. I hate F*ing Cancer! You have an amazing strength that comes thru on every post. My DH and I always pick a celebrity that we would like to have a drink with and really talk with for an hour or so. I'm changing my choice to you. I'm sorry you have to go thru this shit right now. I know it doesn't compare to the shit your going thru but my lumpectomy, (top of very big & heavy breast) filled up, got infected, had to get a wound vac, then when only 3-4 cm deep and 7 cm wide left open to close on its own. HORRIBLE. I was positive it would never heal. The anxiety it caused!
Well Ladies,
I'm pretty much all settled in to PA. Have to hang curtains in the bedroom and a few more pics but that's about it. DH left for Florida on Thursday. I absolutely love this little apt and the area but its really hard without him. He's lonely and wants to move up here ASAP. I have 2 job interviews on Monday, really hope I get the one, it's right down the road and sounds perfect.
Best thing that happened to me, I'm finally home after 7 long years.
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Heather, glad you are settling in. Good luck with the job, hope you get the one you want!
Hope everyone has a lovely day!
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