Calling all TNs
Comments
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Pamelajo- I'm like you. I'm in very good health besides this cancer thing. I work out, eat well, never get sick, even when my children get sick. So now the question is, if someone asks if I'm healthy, do I say yes? I'm assuming that because I'm cancer free I can.
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chemotarded. That is me in a nutshell! My brain just feels broken and the scars, the hair loss, the pain--none of that matters as much as the loss of my brain power. My dr. ran all of these blood tests before we knew I had cancer and he was confused. He told me "your healthy" like I was lying about my diet and cheating and not following his advice.
LNFletch: Yes, we are now healthy. No cancer--YAY!!
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I tell people I am dancing with NED...No Evidence of Disease.
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My tumor hurt too! That's what made me go to the doctor - I was having shooting pains for about three weeks and then I felt a lump in the shower. I swear it appeared overnight. So much for cancer not hurting!!
Pamelajo - you have a great attitude - I love it!
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So many of us seemed very healthy until hit with cancer. Shocking really!
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I wish I could say chemotardation was something I got over, but my short term memory has times it won't work. Maybe it is stress, as it happens most at work. But I asked my Onc if chemo-brain could last indefinitely, and she indicated...no one is sure.
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I rarely get sick myself. However, I did manage to get mono when I was 36 years old....and not from kissing boys in the schoolyard!
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I want a curable disease you get from kissing LOL I'd much rather have that than this.
Note on Chemobrain:
I've taken chemo three times now. When I was 17, my chemobrain (no one knew it was a problem then, and just thought all of us affected were "tired") consisted of not being able to concentrate in class. That's about it. Sorta like ADHD. Fidgity.
Last year, when I took Taxotere and Cytoxan, I lost my ability to spell, and words I knew damn good and well were on the tip of my tongue, but would not make it past my lips. I'd get stuck on simple words like "window" or "tool".
This time, on Adriamycin and Cytoxan, I have recognition trouble. A guy I work with on Thursdays (a big computer geek like me), will tell me "click on the yellow arrow"...........and I can't find the yellow arrow. I see an arrow, but I don't recognize it's yellow. Or I see yellow and don't recognize the arrow shape. Or I will hunt for my shoes, and they are right in front of me, but I don't recognize they are shoes, or they are mine.
Each time, before this one at least, I recovered completely after about a year. My doctor says that it gets harder to recover as we age, but, it isn't due to permanent damage, it is due to stress, fatigue, and general blahs after chemo. He tells me to rest and to exercise my brain as much as I can each day without taxing myself. I have noticed that when I am tired or overwhelmed, it gets worse.
I will not be chemotarded forever. I've got too much to do. I have a huge army audit coming up in a couple weeks. I can just imagine how I'll get through that. Thank God I have good friends at work to help me........
p.s. the army won't allow you to blow stuff up (what I used to do) when you are taking chemo, due to chemobrain LOL How things have changed.
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I too was one of those "healthy" people..maybe a cold now and then...never got the flu..haven't called in sick for being "sick" at my job and I have been there 27 years...weird.
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My onc also said to excerise my brain as much as possible. She suggested crosswords, soduku or word games. I guess that's why I get irritated with those who are just posting on the word games on this site, just to get their numbers up, because I spend a lot of time making sure I play the games right. I force my brain to act smart!
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I agree with you Meece. I think it's important to play the games right. I like the the music games on this site and do find them challenging trying to think of the artist for the song listed. I have more trouble these days with information retrieval from memory and these games help!
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Pamelajo - ejection fraction! A new word I heard today. Mine came back at 46.5%, which meant my 1st day of chemo didn't happen. And now I've added a new doctor to my list - a cardiologist! Woopeee!!!!!
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I was pretty healthy, too, before my diagnosis. More than one person expressed astonishment when they asked me what medications I was on, and I told them none, except for the occasional OTC Zantac. Well, they sure fixed that for me! LOL
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oh Kittycat! I'm so sorry you missed your 1st treatment. Geesh, how sick does that sound? Seriously though, I know how important it is to stay on the schedule you have planned for this crap. Dang ejection fractions!!!!
I highly doubt mine is better next week. I don't feel any better....
Are they talking about changing your drugs? Its the adriamycin from what I understand, that causes the heart problems. My onc just deleted it from the treatment last time. still got the cytoxan
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hello girls i am 31 found out in march 7 centamerter tumer had chemo right a way in as soon as the port got put in have hade 4 rounds every 2 weeks of the cytoxan red devel it has shrunk almost to nothing ya its working. i just started taxoter last wen it was bad experance dock says my body just dose not like it only three to go then done with chemo last one july 14 then surgery and rads we can do this ladys.
has any one had probloms with the taxoter? i have blisters on my hands my nails hurt so bad for about 4 days they are better know day 7 but they sill hurt my body akes i was realy miserbal for 3 or 4 days. dock says not everyone feels like this he says im one that just dose not agree to it well he says just tree more then we are done and its working so well im praying and i know God will get me through this.
beast wishies to all of you prayers and hugs were gona beat this
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farfaith - sorry to hear of your troubles with Taxotere. My chemo nurse used to put bags with ice over my finger and toe nails during the Taxotere infusion and I didn't have any problems. As them for ice when the Taxotere is going into you...as it will help. Hang in there....
Sherri
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Kittycat: adriamycin does so much heart damage and I understand there are now other drugs that work without using this one. If this is your first time doing chemo, Taxotere/Cytoxan is usually enough without the adriamycin. I know it is late in the game and that you received 2 opinions but consider getting a third from Dr. Dennis Holmes at Norris Cancer Center in Los Angeles. Just my two cents.0
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Faith: I had problems towards the end of treatment with Taxotere and I am sorry you are experiencing this. My nails were destroyed by chemo and I hear the ice can help.0
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Faith- my nails too were destroyed by Taxotere. I had my last treatment in March and this past week I just lost two of my toe nails. Luckily it didn't hurt and there is growth from a new nail coming in. Try to keep your nails as short as possible. That will help too. I was also achy from Taxotere. It would last just two days before I was to get my next infusion. I was on Adriamycin/Cytoxan and preferred that because I knew the nausea would last a week then the next week I would feel better. It's great that your tumor is shrinking away. You are almost through- you can do this!
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I already had a heart isue before Adriamycin, and if I only knew then, I wuld not have taken that particular chemo. I have had some work done to fix me, but I will never be 100% again.
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I had to get a MUGA scan to check my heart before Adriamycin and will get another one when it is done. They initially got a 34% ejection fraction and we all freaked for a few minutes and then they scheduled a heart MRI (more accurate) and it was really a 67% ejection fraction! I don't know if it was bad technique with the MUGA or what, but it might be worth asking the doc to follow-up with a heart MRI to see what it really is.
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Titan ... I was tested for the BRCA gene just after my lumpectomy showed I had TNBC. Will do the bilateral mastectomy and ovary removal as soon as chemo is done. Hoping for surgery in September. My biggest worry now is my 23-year-old daughter and what her chances will be of inheriting that genetic mutation. AC is strong stuff -- am 3/4 of the way through and will be happy to say goodbye to AC!! Am hoping Taxol is as much easier as everyone says it is!!
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Thanks Kathleen for your info..and good luck with the FINAL AC! It really is a good thing to have that part done. Taxol is easier..somewhat..although every one is different with their SE's...I still freaked out about taxol because I knew what AC did...wasn't sure how I would react to Taxol. They will keep a close eye on you the first time especially to be sure you don't have a reaction to the taxol. I was told if you would that it would happen in the first 15 minutes..I was watching the clock closely. They will also monitor your blood pressure closely because Taxol can cause it to drop. I think that my brain was clearer during Taxol but I had more body aches. The "good" thing about taxol is that you are now 1/2 way done...and that really helps alot..to know that you are getting close to being done....
I have a daughter that will be 22 very soon...She did talked to her ob/gyn last summer..was decided that she will not undergo the testing. but that she will be watched closer. She was told to feel herself up every month (was instructed how to do a breast exam) and that she should start her mammos earlier. I was diagnosed at 49 so she was told to start at 35.
Been reading the "chemo brain" stories with interest...it sure is nasty stuff isn't it? I'm a little better now...but I do remember checking to make sure I had the same shoes on walking out the door in the morning..then trying to remember if I turned off the coffee pot, shut the garage door..etc...
Plus..I experienced alot of road rage...did anyone else have that? I was just mad at every car that was in front of me....I still kinda drive like a bat out of hell...I need to chill with that a bit.
Anyway..all of you have an awesome weekend...I'm going away for the night with some girlfriends..leaving the DH and kids at home....looking forward to it....just trying to get my life back....
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Titan: That is so funny that you mention "road rage". I have been driving from the Westside to the eastside, about a 13 mile trip to the dr's, and the last two days have been an hour of gridlock. I think because it is so hard for us after chemo to concentrate on more then one thing at a time that we just get frustrated! I know that I do. I called my onc and asked him today, while sitting in my car not moving, what I can take as a supplement for "chemo brain" and he recommended 600 mg 2 x a day of Alpha-Lipoic Acid.
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My vet said he saw me out driving the other day, that he honked and waved, and I never noticed. He chalked it up to my being a very focused driver. Actually, I'm finding I have to concentrate more now while I drive. My chemo brain is frustrating the heck out of me.
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Riley - that is very interesting! I really question the technique of the technician that I saw. She didn't seem to know what she's doing. I am going to see the cardiologist on Monday morning. I hope to get some answers. I don't want to do TC. I'm scared of Taxotere. I know a lot of you ladies have done it, but I don't want to do it!
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Pamelajo - yes it does sound sick that I was sad to not get chemo. LOL! I just think the longer I wait the more time I could get cancer again! I hate this disease!
I wonder what else they can give me for chemo??? The cardiologist said I was borderline and it all is based on the scan (could be the tech). Anyway, he wants to monitor me while I'm on chemo. I was a healthy person before all this cancer crap!
I got a mole removed from my back today. I decided to see my dermatologist while I could. let's hope for clear margins! She said it just looked a little suspicious. Before cancer, I never worried about this stuff!!!
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kittycat - yeah, I had doubts about my tech, too. He did it over and over with this little frown of concentration. I'm being tested before, midway through, and after my chemo because I'm in a clinical trial (less than a 50% ejection fraction would have gotten me booted out of the trial, so thank goodness they did the MRI).
I like that the study means I get tested well and often. I feel like my best chance of beating this TN beastie is to kick its ass thoroughly the first time. I'm very nervous about our recurrence stats the first few years vs. the hormone-receptor positive gals, so I like that my clinical trial treats me as though I have mets, even though I don't have any (that are detectable, anyway).
I get Avastin all the way through X 8. The first 4 cycles I also got Taxotere and Xeloda. I had a lot of GI issues and my hands have finally stopped peeling and cracking, although I'm going to lose one fingernail for sure and two others are iffy. My feet are still peeling. I was blaming the Xeloda for the hand/foot thing - was it the Taxotere, instead?
These last 4 cycles, I also get the A/C. I was dreading it, but it's been easier than the T/X! But I am getting Emend and Neulasta with these, so maybe that's why it's easier on me. BTW, thanks for the gals who said to take Claritin with the Neulasta, and to get the shot in my stomach. I think it really helps! I'm only a little achy. But VERY tired.
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Adriamycin: For those who are having problems with their heart after having this chemo drug, my integrative dr. who has over 30 years experience with cancer patients recommends these supplements to help you recover:
1. COQ10-100 mg two x day
2. Dribose 2 x day
3. Carnitine 500mg 2 x day
4. Magnesium 250 mg 2 x day0 -
Kittycat: I have used liquid iodine on borderline moles and it seems to reduce the signs like darkening, roughening and growth. It's very inexpensive and if you have a problem with another one it's worth a try.0
