Calling all TNs
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Luah and Kris! YES YES YES! Happy for you...the anxiety sucks doesn't it...and once you do hear the good news it's like..ok..what do I do now..oh yeah move on..emotional roller coaster for sure!
Hey Gator..your Gators and my Buckeyes are duking it out right now on TV...assuming you are a Florida Gator fan from your screen name...I love watching college sports and not upset the NBA is on hold for awhile...too much $$$ and egos for me there....
Leanna Yes..chemo certainly isn't fun...but..it is doable...everyone on here has lots of tips and ways to handle it...read them and go with the tips that work for you! We will be with you the whole way and before you know it you will be posting words of encouragement to other women..really, you will...now...back to the basketball game..ha ha
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Riley..never had a sis but do work with some people that are from "controlled" churches so I understand where you are coming from.
My brother had the monk look going so he shaves his head..when I was bald we had a pic taken and I gave it to him at Christmas..I was laughing and crying at the same time... My SIL thought it was sad...yes maybe it was...but dang...it was actually a pretty good pic
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Luah, Denosumab is a bone-building drug that is used for Osteoporosis patients. The clinical trial I'm in is a study on its effectiveness in preventing or delaying the spread of B/C to the bone. I get a shot of the drug (or placebo...not sure which) once a month for 6 months and then I think it's every 3 months for 5 years. As A TN, when they offered me a chance to be in the trial, I thought "why not"...there's a 50/50 chance I'll get the actual drug and the extra follow-up and scans will hopefully provide some reassurance once I'm done my regular treatments.
Leeanna, welcome! When I first googled TNBC and started reading, I totally freaked out. Then I talked to my ONC who reassured me that a lot of the information on the internet is old and we know a LOT more about TNBC now than we did even 5 years ago. I learned from that to take everything I read with a grain of salt. As for chemo, everyone is different but I found it to be very doable! Did I have bad days? For sure....but the good days definitely outweighed the bad for me.
Bak94, YEAH....great news!
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Kym... you look great
Christina... hang in there.....hoping for less fatigue and more whities!
Suze... here's to an enriching family visit.
Leeanna... it is very scary to be diagnosed with TNBC. Most of what you find on the internet is outdated. This forum is a great place to ask questions and get up to date information from a community that understands. Chemo is definitely doable. I even found myself having a bit of fun. I know, hard to believe! You will get through this and may end up stronger because of it.
Hello to everyone. I have been very busy with my birthday week. My sister surprised me with a concert, my women's group made 200 hats and scarves for the Union Gospel Mission, I went to ladies night at the local hardware store and dinner with the girls, planned and executed a 70's themed 40th birthday party with costumes, black light, lava lamp and disco ball, last but not least, threw a baby shower for my BFF's niece. Whew, did I sleep all day yesterday?!
What a great distraction from the previous week! Today I started my new chemo. This round consists of 4 drugs, Methotrexate, Navelbine, 5-FU and Leucovorin. My MO says these have pretty minor side effects. Yeah for that! Infusing 2 on, one off, then repeat for 9 weeks. Now lets hope that these drugs work!
Luah...by my calculations I should be done with treatment on January 3rd. the rest of my winter will be spent ON THE SLOPES! Night skiing is one of my favorites, because it is so quiet and relaxing. I am hoping to get an actual trip in. Nothing like ski in ski out accommodations to maximize your time on the hill. Sorry to go on and on....can you tell I'm excited?
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Has anyone heard from LauraJane?
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Leanna, Vanderbilt is a great hospital, as is the U. of Birmingham hospital. Its good you are going to where the doctors are top notch, and its easier to have confidence in them knowing they are top doctors.
As everyone has said, the chemo is not fun, but you will get through it and its not as bad as you might imagine.
Inmate, night skiing sounds outrageously beautiful. I think its a great idea to plan a trip, or some treat, after treatment. Do be aware that you may not have your full strength back for a while. I was eager to get back to my sport after treatment, and I had continued to work out and be active during treatment, but lo and behold...my body did not react like I wanted it to. My muscles were strangly stiff and creaky, and I was very tired for months. You don't want to cause a muscle or tendon injury that would set you back in your sport. It was a full six months after treatment before my muscles starting behaving close to normal, and a year before I felt totally normal. Everyone is differnt, but be aware...
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Dropping in to say hello everyone. Pray all is well with everyone. Hang in there newbies it does get better.
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Night skiing *is* beautiful!
Having to report son's stolen Acura (last Tuesday) isn't.
Bought another pairs harness yesterday. Today I'm by the fire cleaning three sets of harness while it rains outside. I love the smell of leather.
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Leanna, I just finished TAC about 7 weeks ago and I can tell you before starting I was absolutely terrified. I cried everyday, walked around like a zombie and had no idea what to expect. Thought I was going to spend the next several months in bed sick every day.
Turns out it wasn't a horrific as I thought, not pleasant but doable, I only really felt bad days 3-6 then I would start to like my old self again. Each treatment I seemed to have different side effects as well, I would suggest that if your going to be getting the neulasta shot to help your WBC, take a claritin the day of the shot and the following 2 days after. Everyone says it causes extreme bone pain, I did the claritin everytime and had no bone pain whatsoever. Can't promise it was the claritin but it couldn't hurt.
Lost all my hair too, thought I would be devastated, while I wish it didn't happen I was able to find a good wig and that hasn't been as traumatic as I thought it would either.
I think the best thing was after my last treatment I couldn't believe how quickly the time went. Everyone had said it would be over before I knew it and they were right.
Also, I'm 41, so just about your age, my doc said that because I'm so young he thought I would handle it pretty well.
I've also learned to stay away from the internet, this is pretty much the only site I'll come too anymore in regards to Cancer.
Wishing you luck starting your treatments, the waiting is really the hardest part.
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Hello Everyone:
Bak94- Don't know why, but to see we have the same surgery date makes me cry. Glad you told me. I will be thinking of you.
LeannaClem: You are at Vandy now and I know they will take good care of you. I too immediately went crazy with internet overload. That's how I landed here.
I am working my way through my final visits to onc,surgeon, hospital and reconstruction surgeon. The amount of "visits" drives me nuts. My co-workers are sensational...
Sending support to all.
December 1=denjak 2.0
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I have done the final chemo. Worked great for about 6 weeks. I'm now looking for a new alternative clinic to go to. Have any of you heard anything about any clinics in Mexico etc. It's so difficult to determine what is real and what is a joke. I haven't been on in a while and will try and catch up. I'm still seeing my healer. My onc has thrown her hands up and said there is nothing else. She and two other oncs tried to talk me in to some stage 1 clinical trials as a guinea pig but I'm selfishly not ready to give up. She has told me before that I have weeks maybe a couple of months before, she said it again yesterday. I have now thrown my hands up and am now in charge again. Thinking aboutyou all.
Laura
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Laura, I am so sorry to hear this news. This disease is horrible. I don't know anything about alternative clinics but I know there is an active thread on this site and maybe the women there could direct you. I so wished the eribulin had worked for you. I'm sending you a PM.
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LJ---Do what feels right for YOU. I do not have any info to share with you regarding trials, but as always, I have hope for you and all of us that there will be better days ahead and a good treatment is right around the corner.....better yet---- a cure. Sending prayers and positve thoughts.
Navy
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Laura....my hope is that you find the right alternative treatment and that it works better than the conventional ones. My thoughts are with you daily. Sending you lots of good energy.0
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(((((((Laurajane))))))
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Laura: So sorry to hear your news, but I can hear -- practically feel -- your spirit and resolve through it all. You are one smart, tough lady, and taking charge is a very good thing. While I can't offer any help on the alternative front, I do hope others can, and wish you all the best.
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Laurajane so sorry to hear your news. I hope and pray the dr's are wrong and that you can find something that works for you! Keep working wtih that healer, stay strong and keep us posted.
((((hugs)))) and positive energy!
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Hi Laurajane
All I can offer is this Ayurvedic Institute in Alburqueque New Mexico where Dr. Vasant Lad practices out of. Here is the link http://ayurveda.com/ . It is one of the leading ayurvedic institutions outside of India. Ayurveda is an ancient Indian healing system. Dr. Lad has written a ton of books and is highly in demand. Pancha Karma therapy is a way of cleansing out your system of all toxins and it is done there. Some of my friends have gone there to get that done. They might have a cancer program. Their phone number is (505) 291-9698. If I was in your place, this is where I would go. I saw Dr. Vasant Ladd in the 1990's. He also does vedic astrology and took a moment to look at my palms. He told me a few things about me and my son, and I was flabbergasted at his knowledge. I am not sure if he is still practicing seeing patients, but he is an extremely compassionate man, maybe if you request that you be seen by him, they might make an exception. I understand he lives 6 months here and 6 months in India. Let me know if you have any questions on this alternative therapy. I grew up with ayurvedic herbs, as my grandmother practiced this on her children and grandchildren and I must say that I grew up pretty healthy. All Indians in India practice some part of ayurveda as many of their herbs are part of their daily diet. It is mainly about balancing your air, water, and ether in your body. I wish you my heartfelt prayers and best wishes on this very difficult journey.
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LJ- I simply don't know what I can say, except that I think of you daily and wish you the best in whatever lies ahead. I'm not very good at expressing emotion in here... it just eats me up to think of what this disease does to people.0
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LJ - sending positive vibes your way and hoping for success with whatever path you choose.
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LJ - thinking of you and sending positive, healing thoughts your way.
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LJ: I can only begin to imagine how you must feel with the outcome of this latest disappointing chemo - since it started off with what seemed such wonderful promise, I pray for strength and insight for you, so that you may find yet another path that leads to something else that might help reverse this beast. I can't let go of the belief that there is yet something else to try. Unfortunately, I am not the least be schooled in any type of alternative meds, whether they be here in the states, or in Mexico. Wherever you may go, whatever you may choose to pursue, please know that we are all here for you, praying for resolution and a reversal of this disease for you.
Linda
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Laura..you have the strength and knowledge to know what you need to do. I would think there might be somewhere on these boards some info on alternative clinics. Sending you hugs and peace and positive thoughts. I am so glad you are continunig to see your healer. I think of you daily.
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LJ- no words of wisdom. just a warm hug and good thoughts!
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Teka - Thanks for responding
Titan - huge Gator fan since I was a little girl. Congrats to your Bueckeyes because they sure made us look silly last night.
Starting chemo on Dec. 1st and I am scared to death. I am already freaked out and today they tell me I have to come back the next day for a nueslasta shot? What doess nuelasta do and what should I expect as far as side effects from it?
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Ditto Heidi's post LJ...tho I talk alot about stupid stuff I have a hard time talking about when things need to be REAL...know that I think about you constantly..and worry too and try to will things to go your way..for once..dang..we need a miracle/cure/whatever here..
I hate this f'ing disease..
Will support you and whatever you choose to do from here...let us know..we are all behind you...
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gator Nueslasta shot keeps your blood counts up, I however got mine the same day as chemo, my dr said their is no evidence that you cant do that, and I never got sick. Take a claritan and aleve and you will feel no pain from it. It pulls from the bone marrow. you can google it.
good luck!
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Gator.....Neulasta helps build up your white count. It can cause some bone pain, but I did not have too much trouble with that. You can do this! Think of each chemo session as a bit of YOU time. No phone calls or interruptions. Take a project, magazine or good book with you to pass the time. My posse enjoyed coloring books.
You will find the nurses to be the rockstars of the profession. Very courteous and supportive. I found myself looking forward to each week just to see my "friends" and relax, away from the rest of the world for a few hours. You will do great!
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Gator..oh....I thought it was a good game...the Buckeyes tried to give it away at the end..your Gators sure can shoot the 3! My dh was yelling at the TV..I guess it helped..
Oh..the nuelasta shot..I did hate that freaking shot but that was just me...most of us handle it quite well...I didn't like it..it felt like I had the flu..achy, my bones hurt...BUT..the shot did it's job..my white blood cell count was always very high so I was always able to have my treatments...and that was the important thing..to get those treatments over with....
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hi girls. I haven't posted In age...but want to send a cyber hug to Laura Jane.
After an 8.5 mo hiatus, my chemo pause is officially over. I don't know which was worse, the harsh and quite abrupt menopause, or the fact that I will get to do it twice... Should I live that long of course.
my hair is finally coming back in. Last chemo was April 28.
I opted into the metformin trial. Is anyone doing that? I've read every journal article I could find, and it seems pretty promising.
My date of diagnosis was Nov 19 of last year. It feels odd to be coming up on 1 year. How the hell do you get back to your life without worrying about cancer coming back? Mostly I'm just hoping that the holidays will be much brighter this year than last.
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