Calling all TNs
Comments
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Quick question: Does anyone have pancreatitis? or know a website to blog on? I"m having another attack and just need to bounce ideas off someone...like should I go to the hospital NOW or wait? lol
Before you say....don't take chances, go see what's up...I've been 3 times before and all they do is take me off all food and water and hook me up to an iv and I watch tv for 3 days. Funny thing is, I don't have the aching pain this time, but I do have edema. hmmm
Thanks ladies
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Hi ladies. I wanted to add something to the "dumb things people say....". We are dog people, so our 2 Akitas are a very important part of our family. Today, a friend said that I should think about giving them up because of the germs and dust they carry and it cant be good when going through chemo. Honestly, I can't imagine life without them!! Have your onc's ever suggested such a thing? Mine told me to carry on with living and that included not changing the things that I enjoy. The pups aren't going anywhere :-)
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A huge thanks to all who suggested Claritin. I was finally able to function today!! Took 1 with 2 alieve and felt better about 2 hours later. The benefits of Neulasta outweigh the pain, but Claritin makes it soooo muche easier to deal with. Thanks again
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I will join in from the original thread. I am 34 Years old. 3 kids. Dxn May 9th. BMX June 6th. Start DD chemo Monday 6/25. A/C bi weekly x 4 then T weekly x 12.
I have been given the option to do daily radiation for 12 weeks or have the ALND. After that. I will cross that bridge when I get there. After all of that I will start reconstruction.
I'm so glad we have our own TN thread. It is such a different animal. People just don't understand that having BC isn't cut and dry. I get so tired of explaining why my situation is different than their moms, aunts, cousins etc. People just don't get all of the variables with this disease. Of course neither did I until I had to start living it.
Thanks for all the tips and suggestions on this thread. Most of all the encouragement. I'm sure I'm not the only one here that when I found out I was TN I at first felt like a was screwed! Lol
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Hello to Everyone!
I mostly hang out at the Multiple Sclerosis & Breast Cancer thread (under DCIS, for some reason?), but do read this thread daily, since I am also TN. Having MS for 9+ years now, I'm pretty much an "expert" on all things tingly and numb!
I had DD Taxol x4, after DD A/C x4. Taxol was sooo much easier for me. I would feel lousy from day 3 to day 10 on A/C, but only had a few days that were bad on Taxol, with no nausea, but that lovely bone pain. I had a Neulasta shot the day after each chemo, so the bone pain was probably magnified by that.
At the initial consultation with my MO, he was trying to decide between Taxol and Taxotere, because of my unique situation (not wanting anymore neuropathy than I already had with MS). He also told me that he didn't have much experience with MS patients - I told him that I would educate him!!! He decided on Taxol, at the DD x4 course, because we wanted to be very agressive against this very agressive BrCa, but also told me that if I had too much trouble with that, he would switch me to the 12 week course. You receive the same amount of Taxol, just in smaller doses, each time. He told me that either I would not notice the neuropathy much, or it would double! Oh Goody!!!
Luckily, I did okay. I did start feeling neuropathy in my feet and fingertips, but not until the 3rd Taxol. I don't know if it made sense to him, but I could feel the difference between the Taxol tingling/numbness and my regular MS tingling/numbness. My left foot/leg, which I have had MS problems with, became weak and tingly after each chemo session, including A/C. After the first one, I thought that I had had a MS relapse, but when it happened each time, I knew chemo was the culprit. It seems that it hit my weakest areas. Chemo brain???!!!
I am now 4 mos PFC (the PFchemo version!), and the neuropathy in my fingertips has faded. I still have it in my feet - somedays it feels like I am walking on stones, other days it is a mild tingle. So...it does fade away, just hard to know how long it will take for each individual.
I am now 2 mos post-rads, and 2 mos post-active tx. I had my check with both the MO and RO last week, and they were both amazed at how well I am doing. I have this shaggy, 3in hairdo, eyelashes and eyebrows. And, oh yes, all the unwanted hair is back, too. Darn! That's the "normal" I could have done without!!! They will never say you are cancer-free, but as far as I'm concerned, I am PFC!!!!!! (the other version!). Of course, I will be vigilantly watched, with visits to my MO every 4mos and my RO every 3mos, with mammos every 6mos, and other tests, as needed. There is life after BrCa tx! I sure had my dark days during tx where I began to doubt that, but I have been to Hell and came out the other side, and the sun is shining on that other side!!!
Now, it's back to dealing with MS - my normal.
All you Gals dealing with Taxol...I guess all I can say is "hang in there". It's tough, but it does get better with time.
Annie, you have a very difficult situation to deal with - typing. If you've never had numbness in your fingers before, it must seem that you have these unwieldy sausages to manipulate. I was quite clumsy at the worst of it, and felt for sure I wouldn't have a dish left in my kitchen cupboard, for all the dropping!
Hopeful999, I hope your Mom can get some relief, by talking to her MO. At least she has you to cheer her on/comfort her. That support is the most important thing of all. Between my great docs, wonderful chemo nurses (don't be afraid to ask them questions - they have the real "hands on" daily experiences with patients), and family & friends, I made it through. It's tough - but doable.
Neurontin (gabapentin is the generic - works as well, and is a lot cheaper) helps with nerve pain/neuropathy. I have been on it for years, and it really helps me. Be forewarned - if you do start taking it, it can throw you for a loop the first few days or so. It makes you very dizzy and unbalanced until you get used to it - not a good feeling. The docs start you out at a low dose and increase until it's effective. Just make sure you are in a safe place with safe activities, until you get used to it.
I was also told to take glutamine powder, 15grams, twice a day, to help with the neuropathy. It is an amino acid, so a natural remedy - I liked that. It did seem to help. It is very gritty, so mix it in something warm and drink it fast!
Don't be afraid/ashamed to use assistive devices, such as canes or walkers, if you get too numb and wobbly. I normally use a cane for keeping my balance, but on my worst Taxol days, I used a walker at home, for the security. Awkward, yes, but far better than a fall! Also, wear shoes that are supportive and protective - you don't want to risk clumsiness from loose, flimsy shoes. Tennies gave me support and good traction.
With some of these unGodly temperatures that we are having, it is a good idea to keep cool during Taxol tx (except Annie!) MSers usually suffer an increase in SEs when the temps rise. I don't know if heat would affect 'normal' folks on Taxol, but it might be a good precaution to stay cool, anyways.
Another thing I dealt with was "Taxol fingernails". Luckily, I never lost any, but I could see the nail bed changing, like it wanted to lift. I did have ridges develop, and this weird brown staining - looked like I had been refinishing furniture with wood stain! Wear rubber gloves when doing the dishes or anything that will be harsh on your hands/nails. Also keep your nails short, so that they don't catch and rip/lift. My nail problems have mostly grown out, now.
Be careful shaving, if needed. It is very disturbing to try to shave numb skin. I still have a numb underarm on my MX side, and it is a challenge. I also find that my skin, allover, is sensitive, and I nick myself easily with a razor. That is probably a consequence of all the chemo.
Talking about hair...it often starts growing during Taxol treatment. I had this fuzz everywhere, except my eyebrows and eyelashes that said "see you later" during Taxol tx. They are back, now. So far I have my usual straight hair, with the growth pattern making it swirly, and the white hair I had before is also back. However, it is very dark - much darker than my usual mousey brown. Kinda fun!
Has anyone had an increase in facial hair after chemo? I've always had peachfuzz, but yee-gads, I'm giving my Golden retriever competition for fluffiness!!!
Well, this is long enough. I think I have beat CS for wordiness!!!
May the sun shine on you, temps rise or fall for your comfort, and Life be gentle on you this weekend. As that wise-old sage, Red Green, says: "I'm pulling for you. We're all in this, together"
Take Care ~ Shar
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jazzyj - your friend probably poses more danger to you than those pups!
I was told to live my life and enjoy being around my almost-2 year old grandson...and we know that there isn't anything germier than an active little boy!!! I just had to stay away when there were active colds or flu in the family.
Keep lovin' those pups ~Shar
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Tazzy, I would be lost without my dogs
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Welcome Simplybless!!!
Shar - great advice! Sorry you are having to deal with the double trouble of BC and MS.
Heather - what a lovely experience!
It must be nice, to be back with your family.
So glad your DH is going to visit next weekend. I would be lost without mine! I mean who would take out the trash, do the laundry & the dishes ;o0 -
spica..on the facial hair w taxol..yes...I shaved it with my husbands razor and it never came back..now that was weird...standing in the bathroom shaving w my husband...very strange
Hey simplyblessed..welcome to this thread...agree with you on how hard it is to explain tn to people..they just get confused...
Ok..ladies..my 5k today..it was hot as heck but I made it through the whole thing..all because of you..I thought of Mary, Suze and Laura and all of your thighs clapping for me...and it worked...took a minute off my time from the last year's race...placed 6th in my age group...this was a run for triple negative research so it means alot to me...
Thanks for your support! There were 3 freaking hills and I just wanted to quit..but I couldn't....
There were over 500 participants...it was awesome...I just hope and pray that some day...very, very soon..our new ladies can come on here and say..I was diagnosed with tn...and they are giving me this pill, vaccine..whatever..and now it is GONE...forever....I want this so bad
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Woohoo, Titan!!!
My hair stylist shaved away my facial fuzz when I got my first "trim" and it never came back. Don't be afraid to remove it.
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Hello everyone. I've been hanging out on the surgery board, but came across this one tonight. Hopefully, this post will make sense. I'm having a L UMX on Tuesday and not thinking clearly at the moment. Brief history:
DX 12/02 with IDC, ER/PR-, HER-2+, 3 cm, 0/4, stage 2a. I had a R UMX with 4 rounds of A/C and reconstruction with implant and augmentation on good side.
DX 5/12 with new primary IDC, ER/PR-, HER-2- by core biopsy. U/S and mammogram showed two benign appearing nodes, 1.8 and .8 mm tumors. I will get my staging after my R UMX.
Ten years ago, with the first DX, Herceptin was not given as the standard of care with HER-2. At that time, only women that had advanced BC. Therefore, my only treatment was UMX and A/C x 4. I have had no problems 10 years later. Now, I have TNS. Isn't it basically the same dynamic as what I had before, since I had no treatment for ER/PR- and HER-2+ BC?
On the other hand, my friend, who was ER/PR+ and HER-2-, she decided to have a MX, with DD A/C x 4 and DD Taxol x 4. She decided not to take the Tamox for five years.
In addition, I was told that chemo works better on women who have ER/PR- Any thoughts or comments?
Don't these scenarios seem all the same? Am I making any sense at all??
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Titan--Hip hip hooray! I'm in total awe of your achievment today. I can't seem motivate myself to even dust off the exercise bike. I'm so ashamed.
SimplyBlessed--I agree, this is a wonderful site to get love, encouragement, and support. I'm nearly a year NED, and still want to stay connected with women who really understand.
Jan
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Well done Titan!!!!
Welcome Lovemysamoyds - too tired to figure put your question, but I sure someone will come along to help. I had a/c/t the first go round - you can only have the A once - causes heart damage. So with my new dx - I was given T/C.
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lovemysamoyeds-sounds like you did have treatment for your er pr neg her pos the first time, the 4 ac. OBXK is right that most docs won't do ac a second time due to heart damage, but I did get ac a second time! Kinda scary, but he said I did not go over my lifetime dose and he delivered it with a 24 hour drip. Well, I struggled with the idea of having ac a second time but it is the treatment I decided to go with and I had a complete response to it, I just hope i don't wind up with other issues later. They did a muga scan on me with each treatment and so far my heart function is really good. Going thorugh bc a second time pretty much sucks, but I felt my decesions were much more researched out this time.
Annie-I hope you know I was teasing you:) I don't know how so many remember so many names! Even when I go back to look again I forget!
Great Job Titan!!!!!!
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Good Evening Ladies
Thanks to everyone who answered my post on neuropathy. I will have to talk to my oncologist when I see her next but they give me the feeling that I should continue with the taxol and give my typing away which I am not ready to do yet. They keep saying we will monitor you closely and I keep telling them what is happening but they still insist on giving it to me anyway so when does the close monitoring start??
Heather - glad you are enjoying your job and new life and that you caught up with some long ago memories. Good that your hubby and babies will be with you soon.
I couldn't be without my dogs (well may be Chloe lol) either or my big boy cat. I have never caught anything from them and neither did my girls catch anything when they were growing up around animals. They are cleaner than some people. I don't stay away from the grandkids either unless they were going down with a cold and then of course it would be stupid to go near them but on the whole I see them almost as often as if I did not have BC.
Titan - well done. We are so proud of you. We knew you could do it and at a quicker time too. I'm glad you could hear us clapping cause we went all out and even waved banners!! We too want the pill or vaccine and one day it will come hopefully in time for all of us. I hope you opened that bottle of wine when you were finished, you certainly deserve it. Well done girl.
Jan69 - whats an exercise bike????
Bak94 - of course I know you was teasing but I am sorry I missed you out and won't ever do it again. I seem to keep promising not to do things again on this site, I must put my foot in it quite a few times lol, typical me.
Oh dear those dratted abbreviations are stuffing me up again. I just don't know what you are talking about so will leave it up to the ladies that do know how to answer questions.
Spica16 - that is just what my fingers are like fat sausages that won't move. I'm so sick of putting my chinese typing correct and its really stressing me out. Spica does Gaberpentin make you vomit or feel nausous at all?
Have a great day ladies and enjoy your sun whilst you have it, my turn next lol.
Annie
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Titan - Congrats on finishing the 5K! And thanks for doing it, for all of us. I feel so guilty...spent the day trying to talk myself into going to the gym, decided it was too hot, and never got there. I think you've shamed me into going today.
Annie - I'm sorry you're having such a tough time with Taxol. I had minimal side effects from it so no wisdom to offer, but it sounds like you've gotten some good advice from others.
Heather - Such a lovely experience you had at your old house. I guess that's partly the point of moving back home...to be close to the people and memories that are so dear .
Have a good day everybody!
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Annie - I forgot to mention this....I'm one of those oddballs who hates the summer...I always feel happier and more energetic in cold weather....freaky, I know.....but I envy you right now!
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Dear Lord, you have been busy bees on here this weekend!
Want to tell you my "small world" story. I landed on a poker table with a nice man (good player, good sport) that I had played with last time I was there. I was teasing him, that he had told the truth that he came there often, and asked if he lived near the casino? He said no, he actually lived about 80 miles away. Trying not to pry to much, I asked him, North or South? He said, " you probably wouldn't know it, I live in a small town called Raynham". I kept my poker face on, kept playing, and reached into my wallet and showed him my license. He looked at it and burst out laughing, when he saw I lived in the same town. (Now the whole table is laughing at the small world occurrence). He reached in his pocket (he has an even better poker face than I do) and showed me his license. I looked the address, and burst out with, "OMG, if I walk out my back door, your house is about 1500 feet from mine!". Very small world!
KSteve - have a wonderful do over!
Bak94- congrats on school, but boooo to the drain. Don't you dare think of leaving us Missy!!!
Minxie - How is DH's recovery progressing after his remark? *big grin*
Jan69 - sounds like lunch with your friends was wonderful!
Mags - you are right about this disease making you re-evaluate the people in your life. I'm blessed by wonderful friends, but a couple people got kicked to the acquaintance list. Hope you danced your a** off!
Welcome Hopeful999 - please come back for support or questions about your Mom anytime. ((Hug))
Titan - I actually did get lucky.....ooooh you meant the casino? (sorry, reading 50 Shades and Cocker's "Guess Who" cartoon has put the devil in me). Congrats on your achievement, I'm in awe. *Applause*
Sugar77 - Congrats on the great check up. My vote would be for a PT, who has treated CA patients (best of both worlds). Can't remember you location (can't flip back to look) but if in US, try your local chapter of the American Cancer Assoc. for a recommendation. "I've been tied up reading the 50 Shade book". BEST LAUGH of the day!!!!! Anyone reading them caught it immediately.
Wow Riley, that was both informative and scarey. You've been through a lot.
Tazzy - congrats on being PFC (your definition!). *Sends a psychic a** kick to your neighbor*
NavyMom - some people are just unbelievable. Tazzy's comment on the book about the book on what people say was interesting. Maybe we should all put our heads together and write a booklet on what NOT to say to CA patients, that can be given to family and friends.
McCrimmon - glad you got to see the house and that it was re-done in a way that gave you happy memories.
TnbcRuth- Hope we haven't heard back, because you got thee to the hospital! Feel better. (pancreatitis is awful)
Jazzy- hug those puppies often, it's wonderful therapy.
Welcome Simplyblessed. - I was scared chitless until I found this thread, also. I'm curious about 2 things. What is ALND? Also, 12 weeks of radiation? My rad onc. Said they never would do more than 7-8 weeks max.
Hi Spica- welcome. Wonderful info about BrCa and MS. I remember driving down the highway one day (still bald) and looking in the rear view mirror and seeing that I was growing a lovely curly Santa Claus beard. First thought was Cocker's WTF!!!
Lovemysamoyeds - can't help with your question but best wishes for your surgery.
OBXK - great reminder to grab and enjoy every day we are given.
LuvRv - would love to get together and compare notes. I was at Foxwoods, but you'd never want to meet me there. Unless you play poker, you'd never see me, lol. I'll PM you.
Actually my MO is a lovely young lady, with great bedside manner, and who has been VERY patient with me. (Nurses are the worst patients). My BS, is an absolute sweetheart, and I'll give her real props for telling me "wow, this is a serious mistake" when we discovered that i should have been BRACA tested. I would say my biggest complaint would be the lack of information, or misinformation given. I truely believe DF needs Nurse Navigators assigned to every patient to improve the quality of care.
I also did get lucky at the casino. Played video poker for 10 minutes before heading to the poker room and hit $100.00 on a .25 play. Has never happened in all the years I've gone there! (Thank you God, going toward the $800. I have to pay for my BRACA test.)
And last but not least, Cocker I hope that you are hanging in there. I think I have now officially beat you for the longest post. *big ole evil grin*. I'm trying to take up the slack for you because I know you're having trouble typing.
Hoping every one is having a wonderful weekend. I have to get moving I have a funeral memorial to get to.0 -
And while I was typing this book above Ms. Cocker came and snuck in. We must have been typing at the same time! *smooch*
Hope - I vote with you, I hate really hot weather.0 -
I am never going to catch up today with all the posts... but just wanted to check in and say hi and thinking of you all.
Titan..you go girl... what an amazing achievement - you put me to shame too.
Hi to all the new ladies - welcome. This is a great board.
When my brain is not in chemo fog I will read back, even if I dont respond.. I love reading all your posts.
Just wanted to say hello, thinking of you and hoping you can have enjoyable days, and anyone with SE's (me included) they are bearable and minimal.
Peace and hugs xxxxxxxx
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Kathy: ALND is axillary lymph node disection.
Titan: Great job on your race. And a sincere thank you for doing it. I have only done one "pink" fundraiser. I found it to be very emotional. I am hoping sometime in the future to do another one.
A big welcome to all the new gals.
Have a restful Sunday everyone.
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Annie - I am about 2 months post-DD taxol and still have bad neuropathy even though I was taking both Glutamine and Acetyl Lipoic Acid (both are supposed to help with neuropathy). I just stopped the Acetyl supplement a couple of days ago and started the Gaberpentin. I wanted to get off the Acetyl because it can lower your blood glucose, and I wanted to start Metformin which also lowers your blood glucose. I was afraid to take both at the same time. I am taking the Metformin for anti-cancer properties, not diabetes. The Acetyl Lipoic Acid really did help with the neuropathy because when I would cut back, my feet were real bad, like walking on rough gravel and hurt. I am only taking the Gaberpentin at night because it makes you sleepy but I don't sleep well anyway. The Gaberpentin has been helping a little, but not much with the neuropathy. When I work up to taking 3 of them a day, maybe it will help more. I really want to exercise more like I used to by walking 2-3 miles, but I cannot because my feet hurt so much. I hated Taxol as I had the worst side effects, much worse than AC, but I know that is a lot different than most people experienced.
I am doing radiation now and will be done with my last 4 "boosts" on Thursday of this week. Then, I will meet with my BS to decide on taking out my port and which follow-up tests/screenings I will have. I don't see my MO for 3 months. He said he considers me cancer-free (even though I've had no tests to back that up). I had adjuvant chemo, so there is no knowing and I am still fearing it isn't all gone until I have some follow-up tests.
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Annie--I don't know if you are serious or joking---what's an exercise bike? Well, in case you are serious, an exercise bike is a stationary-type bike with one wheel which doesn't touch the ground, but you pedal it like a bike. I bought the type that you have to work your arms back and forth, so it gives me and upper body workout too. My physical therapy clinic used the exact same one. They only thing I don't like mine is that I have to actually get on it and pedal the thing. I seem to operate my life on the recliner with my laptop on my lap. So pitiful.
I'm going to visit my little grandkids tomorrow and stay about 4 days. DH is staying home. He'll have to go the supermarket to buy his frozen meals. His kitchen skills are limited to scrambled eggs. So pitiful.
We are having blessed relief from heat these few days. I love it. Finally planted my tomatoes today. So pitiful.
To all those who are are hurting today, both physically and emotionally, you are in my heart and I know you will have brighter days soon. Jan
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Hard to keep up with this thread, but just popping in to say hi and hope you are all enjoying the weekend.
Titan: You rock!! That is a great accomplishment... and a wonderful thing to do for TN. Congrats.
Annie: Are you already on a weekly schedule? (because that would be one option). Or ask your doc about switching to taxotere - for some women, the neuropathy is not as bad.
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Jan69 - I was joking. You said you was going to dust yours off, I said what is an exercise cycle meaning I haven't been on one for years and (don't intend to, haven't got the energy. I will leave that up to Titan). lol
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Kathy - I love your small world story! Hope your BRCA test comes back negative.
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AWESOMe Job Titan and YES I also hope that one day the TN sisters can just take a pill or a vaccine and that's the end of that.
I wanted to say THANK YOU for all the love and support after my pity party post the other day. I was more mad at myself (I realized) for letting this "friend" second guess myself and get myself down again. I was stuck in a rut the rest of the day and night. I was in bed by 8:30pm and just cried myself to sleep. I haven't done that since being in chemo. It's frustrating when people truly just don't get it. Thank you ladies for understanding and being there to hold me up when I just wanted to crawl in a hole and cry my eyes out. You're all amazing.
I had a great weekend of kiddie birthday parties and family pictures for my in-laws 40th wedding anniversary. My baby turns 2 on Tuesday and my 3.5 year old graduates preschool on Thursday. It's going to be a busy week - better have my kleenex ready. I think they took out the cork for my tear ducks when they removed my boobs.....I cry at the drop of a hat now. Happy Sunday everyone xoxo
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I don't like hot weather either...when Cocker talks about it being cold in NZ I'm jealous!
Kathrynn...happy to hear you got lucky..heh heh...with the guy next door...??? and you had to drive 80 miles to a poker table to find him...funny stuff
Geez borntosurvive..that "friend" isn't worth your time...please dont let people like her get you down...talk to your oncs and come on here for support and realistic advice.
Have a great week everyone...ugh..I hate Mondays
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Has anyone had Shingles? This is my first experience and it is sooooo painful. Any ideas on how to stop the pain and the horrible blisters. It is around my midsection on my BC side.
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Annie--OK, my answer about "What is an exercise bike?" It actually is a fancy word for clothes rack. Quite useful, too. If you'd like one, they are often found at yard sales. Of course I bought mine at full price because I was going to be serious about getting and staying fit! I'm so pitiful. Jan
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