Calling all TNs
Comments
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I have never had shingles but I am on new med for nerve pain. It is lyrica and seriously I can already tell a difference. It says it is also for shingles and diabetic nerve pain. Hope you get some relief.
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Kathyrnn, I started laughing when you said I'd been through a lot, because I caught myself complaining the other day that "This damned breast cancer has ruined my health!" and I didn't mean the cancer itself. And then I caught myself and realized that sounded kinda dumb - of course, cancer ruins your health. That's kinda what it does.
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Hi Annie,
Gabapentin can make you very dizzy and unbalanced when you first start on it. The docs usually start you out on a low dose, and then work up to a dose that alleviates your symptoms.
It doesn't cause nausea per se, but if you get nauseated from dizziness, it might. Start it at night or on one of your late sleep-in mornings, so that those dizzy sensations are minimized. Give it a few days - once you get used to it, the dizziness and imbalance subsides.
Good luck - I hope your docs find the right answers for you.
Take Care ~ Shar
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Hi Ladies
I am having my own pity party here. I am sick, sick, sick of taxol. I wish I had never heard of the freaking stuff. I am sick of my freaking little sausages having no freaking feeling. I can't even put my freaking fingers together. They have no freaking stength in them. I can't open freaking anything. I can't do my freaking bra up (the old fellar gets the pleasure of that lol) I can't open the clasp to put my watch on and if the old fellar puts it on I can't undo it to take it freaking off. It took me all day to type seven freaking letters, I would normally do them in a freaking hour. My hands and arms are covered in a freaking itchy rash that is driving me freaking batty. I've got itchy thrush down the other end that drives me freaking mad all night regardless of what freaking cream I use. I don't want their freaking taxol and I don't want their freaking radiation cause that will bring its own freaking problems. I rang my oncologist who wasn't freaking there and her freaking nurse said go along to your 8th treatment on wednesday and will discuss it then, so freaking helpful. I am freaking tired and got no freaking energy.
So to all those ladies who don't like the heat, please send it my freaking way, cause its freaking cold here. AND just to top it off its freaking raining.
Can you gather ladies that I have had a freaking shit of a day and its not even freaking bed time. Now that I have got that lot off my freaking chest I feel freaking better.
I do hope you are well and happy and not having a freaking day. Annie
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Hey Kathrynn - any chance of a little romance between the casino chap who lives 1500 feet from you ???? lol
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So, now it's WT...FREAK !!!!!!!!!!!!!!!!
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Spica - good one lol
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HOLY FREAK, CS!!! Not a Freakin thing I can do to help but let ya know that I'm feelin for ya. OMG, so much to put up with and this miserable Taxol. I am just wondering.....Could your Onc switch you to Taxatare instead? Not sure if that would be a bit gentler to your system or not. Really, Really hoping things get better soon.
Wren, are you on any antiviral meds? They can help with the severity of the rash/blisters. I had a very mild case of shingles many, many years ago and took a course of antiviral meds.....can't think of the name of them. Damn chemo brain.
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I feel so FREAKING bad for you CS. I had taxol (4 rounds) and had numbness in my fingers and the heels of my feet. I think it's slowly going away now. It's freaking annoying, I agree. Just try to remember that it's all temporary and you'll be back to your old freaking self in no time.
And just to put in my two cents.......I LOVE THE FREAKING HEAT!!!! I always say I was born in the wrong country (Canada). I do love Canada but really hate winter and cold. So maybe I can trade places with those of you whole like the cold during our winter months if you are somewhere that's warm?! Just sayin.....
Enjoying my coffee while my boys are still asleep. I have the windows open and I'm listening to the early morning birds. Today's a new day, a new week and I'm embracing it. Love to you all for a FREAKING great week xoxo
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Wren- I have shingles now! It started 2 weeks ago with a small rash on my shoulder BC side and went in front to my collarbone and in back up my neck. Mine doesn't hurt too bad but it itched like crazy! I went to the doctor on day #4 and he started me on an antiviral for 7 days. I believe it help stop the spread. I used calamine and Benadryl spray to help with the itch. He told me to take Motrin if I had pain. To this day, the blisters have dried up and don't itch as much but it is still tender on my shoulder. Hope you feel better soon. Hugs.
CS- I feel for you.....Taxol #7-8-9 were hard on me too. I asked to put my fingers in ice during the Taxol infusion.I knew they did that for Taxotere to prevent neuropathy in fingers so I asked for ice because my fingers were numb from Taxol. It helped! Ask your nurse at your next Taxol. (((hugs)))
I read posts on here everyday and am sending big hugs to eveyone.
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Wren - I agree with Babs. Get a prescription for Valtrex - it will help knock the shingles out of your system. I'm lucky that I had the shingles vaccine two years ago before I started any BC treatment. I will never regret that decision. Way too many of us get shingles during or after treatment!
CS - My heart goes out to you. Neuropathy totally sucks, and your freakin' onc needs to pay attention. When I was on Taxol, I took Vitamin B6, Acetyl L-Carnitine and L Glutamine to help prevent neuropathy. There are clinical trials to determine if Acetyl L-Carnitine works, so talk to your onc and tell him you want to get on this mix of supplements.
http://www.clinicaltrials.gov/ct2/show/NCT00775645?term=acetyl+l-carnitine&rank=7
And tell him "no" is not an option.
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FREAK!!!! Sorry cocker!!! {{{{HUGS}}}} to you from Melbourne Florida where it is raining buckets. Hang in there love. Before you know it you will be done with chemo and onto bigger better things--like life! We all have the days where it just seems like there is no end in sight. We are here to help you and listen to your Freaking!! So freaking feel better.
xoxo--Maggie
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Mags - Send some of that Florida rain to Colorado so our entire state doesn't go up in flames! We need it . . . going for 5 days over 100+ degrees and that's not helping either.
I hope everyone has a great week!
Kathy
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Cocker-((HUGS)) You can make it just relax when you need to and just think it will soon be spring and you will be all DONE and ready to enjoy your normal activities again.
Ladies- don't worry too much about off the wall comments friends and family say. Sometimes folks just don't know what to say. I have said this before I didn't share my Dx with everyone because of that simple fact I didn't want to deal with all the extra attention. Only close family and friends know. I have little ones and I don't need thoughtless people just speaking from out of nowhere and upsetting them. My kids know but they know what they need to know at this point in time.
It is so toasty outside! Summer is definitely here!!!
Let's focus on making this week a GOOD ONE!!!
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Jazzyj-oh my, your friend must not be a dog type of person, lol. Dogs, and other animals, are so healing for so many people. At my mom's oncologist's office, they actually allow dogs in where people are getting chemo!
One onc. brings his Ridgeback to work with him every single day. I've seen it laying in his office a few times The chemo hallway has pictures of what I believe are all the Dr.'s and staff's dogs. Definitely a dog friendly office. I'm one of those people that believes people are germier than any animal That's just me though. I once tried to take my little Dachshund into Wal-Mart and the greeter stopped me and told me I couldn't because of all the germs she may carry, I just said "Really?! Have you seen the people that come in here? I guarantee my dog is cleaner than a lot of those people! Lol".Hope everyone is doing good. My mom only has two Taxol's left. Her side effects aren't as bad, thank God! Me, her and my three kids were able to go out to breakfast the day after her treatment last week, then she was even able to take her Grand kids summer clothes shopping! Something she's really been hoping to do, just been too weak. So that was great to see her out doing stuff again finally! Her onc. said her hemoglobin is still a little low, she has her on iron now, so if it's still low at her next appt. on July 5th, she'll have to have a blood transfusion. Hoping it goes up! As for myself, hoping to get my BRCA1 results this week
Pretty nervous, but ready to take on whatever is necessary. Have a great day everyone! 0 -
Wow! I haven't been on the board for a while and there is lots to catch up on!! I have some great news to share and I'm asking for opinions and advice. I had my LX 6/12 and just had my post op appt, NED!!! I had chemo first with a clinical trial and my docs still want me to have A/C this summer and rads in the fall. My dilemma is whether to go through A/C unnecessarily but don't want to miss anything either. Thoughts??
Kathrynn- we share the same docs and I agree that our MO doesn't like to hear suggestions that aren't part of "protocol"( I'm also a nurse).I also told them that DF needs case managers!!! (like minds!)
CS- I got some of my best advice from chemo nurses who talk and listen to their patients. One suggested going off the dexamethasone after infusion and take more anti nausea meds as needed for break through nausea (Compazine or Zofran). I did that and felt SOOO much better!! The dex is often the reason for so many nasty SEs as well as the gas pain. I also ate ginger in every form for nausea. Also B6 helped with the neuropathy. A pharmacist told me that chemo benefits most in the first 24 hrs, after that pure toxicity, so flush it out before damage occurs!!
Maggie- good luck with recon. Did you look at the Miami Breast Center?? They do Micro fat grafting where they lipo and use your body fat for recon and not extensive surgery. Some women started a blog with good info.
I've turned into a research junkie and on this site I saw info on Xeloda. The study ref was in 2008 (not sure if new info is available) in a TN ask the expert section and think it 's worth reading and asking MO about it if they are ordering it.
Best to all!! Nance
born to survive- keep up the fight and tell your " friend" what I used to tell my nursing students; that life is terminal!!
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Bornto... I hear ya about crying at the drop of a hat.... My DH calls me tear drop tilly now. Happy you got it out of your system.
Kathyrnn... fate is a funny thing
Cocker... sorry you are having such a freaking sucky time of it - pity away.
KSteve... me and mags could send you rain from both sides... BC is currently being washed away and they have Debbie ? really hope they can get those fires under control... scary stuff. I was evacuated a few years ago cos of forest fires... thankfully no one was hurt and 3 days later the weather was kind to us and we could all go back home. Mother Nature is a bitch.
LNBCA - good luck with the BRCA1 result. Ha ha on the dog and walmart story... so true.
To all those I've missed - sorry but still thinking of you all (chemo brain fog - PFC - woo hoo!). Really wish that all those suffering at the moment, the SE's are more kind to you each hour.
Peace & hugs xx
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Nah Titan, I was just being a wise-a**, he has a girlfriend. Though, (for Cocker too) I did, lol, store in my data banks that he referred to her "as the girl I'm seeing" and not as his girlfriend. One of the things that I learned from Steve Harvey's book, Think Like a Man, Act Like a Lady, is that men who are serious about a relationship, do 3 things: They profess, protect, and provide. If they are serious, they will ways refer to you as "my girlfriend".
Wrenwood, everyone already gave you great advice (Thanks, LuvRV, like NavyMom, my chemo brain couldn't come up with Valtrex to save my soul). The sooner you get on antivirals the better. My doctor immediately gave me an oxycodone Rx for short term pain (I was very lucky and didn't need it) , and talked about Lyrica later if it was needed. Feel better.
Jan69 - I have a lovely treadmill I can send you to expand your storage options.
Riley - I don't think it was dumb at all. In the beginning the CA, doesn't cause us any pain, as compared to some of the other SE. I remember when they were talking about the heart damage A/C can cause, well isn't this wonderful, I'm taking a shot at heart damage to beat the Ca, and with my luck I'll beat the ca, toast my heart, and won't even be able to get on a heart transplant list because I have Ca. Funny what runs through our mind.
Cocker - I'm so sorry you're feeling so bad and LuvRv, said it perfectly, "no, is not an option". I do have one suggestion. I've spent my whole life dealing with chronic yeast infections (trust me, Monistat shareholders owe me a thank you for their profits, and sadly it didn't do s*it). About 2 years before my dx I convinced my NP put me on Diflucan (fluconazole). It was an absolute miracle drug for me. When I got dx'd, going back to a continuous yeast infection was one of my fears. I asked the MO, if I could take the Diflucan if necessary and she said yes. (don't know if I trusted her advice because my PCP, was agains't it). Diflucan is very hard on the liver, so I don't know how good an idea it is while on chemo, but the other side to the argument is that to treat vaginal candiasis, only requires a one time single dose of 150 mg. It may be something to bring up with your MO and see what they think. (and if he's male, be insistent, because they have no concept of how miserable it can be). I also think in your current state it's time to graduate from "freaking" to f*#king. Hang in there.
Borntosurvive - have spent time in Montreal in the winter, no freaking way I'm switching!
Babs37 - ((hugs back))
Fighter - I can see why with children you would keep it private and thanks for that reminder so I never stick my hoof in my mouth when children are around.
LNBCA - glad to hear Mom is doing well and I'll keep my fingers
crossed for you.
Tazzy - chemo brain really is a
Bitch. I now have to write a list before I go run errands, and I get halfway there and remember I forgot to take the list!
Njprn - I'm thrilled to hear that your NED. You hadn't been here, so I hadn't shared with the group that we found out in a PM that we have the exact same doctors at DF. I swear if I hear "that's not our standard of care" one more time, I'll scream. I love the "like minds"! I also agree that the chemo nurse i had was wonderful. I don't know what you received for tx in your clinical trial, so I don't know what to say about the A/C, but I do like Katie's approach of hitting it as hard as you can.
Wishing everyone joy today.0 -
Wren - hope you get some relief soon!
Annie - oh sweetie, I am so sorry the neuropathy is so severe. Big, gentle hug.0 -
Njprn: Were you pCR by the time you had surgery? - I think that would be a big determining factor of whether or not to do further chemo... also, on presentation, the size of original tumour, evidence of node involvement, age, health etc. I'd get my docs to justify their recommendation, and run with that. What chemo did you do already?
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njprn: in regards to a/c. Do what feels right for you. Maybe a second opinion if you are still unsure? As you know, TN is a beast and very aggressive. That being said, I'd take the chemo..and KILL the BEAST! (and I did)
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Annie - Honey, I can hear you, I feel for you, I also had some neuropathy, that stuff is out of this world, it is horrible. I wish that your Onc. could really pay attention to you, my Onc. staff were on top of any SE's I was having. Same day appointment, attention, options, meds, everything. No one should suffer to this extent, there's gotta be some remedies. I did 4 rounds of Taxol every two weeks, which is called dose dense. Dose dense is so much harsher than weekly doses and by the fourth I had neuropathy. I had major neuropathy much later, which I don't think was caused by Taxol but it was caused by Aridimex. Anyway, Taxol is a very difficult drug to take and it seems like it is taking a big huge toll on your body. Your Doc can advise you whether you need to stop or take some other meds to get you through this. I am wondering whether the effects lessen in between treatments. I believe you have had only two so far, right? And I believe you are doing them 3 weeks apart?
I am sending tons of sunshine your way. Pray hard for every moment, and maybe stop working altogether, girl. Stop typing, you will be able to type again later.
As a mood lifter for everyone - my deputy exec. director, the only other lady at work who has had BC, came back to work today without her wig, with a full head of curly thick hair. I am not sure what she was complaining about earlier telling me her hair was not growing. She looks amazing, is back on track with her life. She is one year behind me. I am almost 2 years out from diagnosis, she is 1 year out. Life does get back to normal, it is just a matter of time and perseverance.
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Cocker.... Oh boy on the Taxol! Wish I could help with advise but all I have is an air hug. Sounds like August will be scary when I start Taxol, phase 2...
I agree with all who love the heat! We moved to SW Florida as part of our 3-5 year plan.... That was 17 years ago!! Fell in love with everything about it, except for leaving my family up North.
Last night was quiet a mess here though. 60mph winds ripped screens out from our enclosure, threw plants all over the place followed with massive rain. Mud, mud mud everywhere!! My poor hubby (or is that what DH is?) was outside securing the patio furniture while all this was going on! We are so lucky nothing hit the windows..... Something kind of funny, we had a GIANT frog in the pool! Our 120 lb Akita, Blaze, was going nuts, but not nuts enough to go for a swim. He's a big fluffy mush mush hound :-).
Anyway, have a great week ladies! Air Hugs.0 -
LNBCA - Your little guy wouldn't be denied here! In the area where I live, dogs are welcome almost everywhere. We even have Yappy Hours at some places that include 1/2 drinks and app's for the owners!! Gosh I miss Wine. Sorry thing to miss, right?!
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Lovleyface - You wrote while I was writing so I missed it. Thanks for the positive comments regarding you and Your colleague. It's definitely a mood lifter so thanks for sharing! Okay, I know, one post at a time newbie :-)
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Ok. Getting really Freaked out again! I am back from vacation with my husband. Well actually back Friday. The weekend we had my daughters 6th dance recital! It was so great to see her on stage and how much she has grown since she started! Now I am back to reality and looking ahead to Thursday when I start AC treatment. I am still a wreck and am hoping for minimal SE's....
Jazzyj.... I know u started the same exact treatment last week. How are you feeling? It would be nice to hear from someone on the same schedule as me!0 -
Ok. Getting really Freaked out again! I am back from vacation with my husband. Well actually back Friday. The weekend we had my daughters 6th dance recital! It was so great to see her on stage and how much she has grown since she started! Now I am back to reality and looking ahead to Thursday when I start AC treatment. I am still a wreck and am hoping for minimal SE's....
Jazzyj.... I know u started the same exact treatment last week. How are you feeling? It would be nice to hear from someone on the same schedule as me!0 -
LuvRVing, that's interesting. I've been taking Acetyl L-Carnitine because MBJ said it was good for chemo brain. I still have my moments, but I think it has helped.
Hugs to everyone having freaking issues of any kind. Annie, I'd love to switch climates with you for a couple of days; it might help both of us. It's so hot and dry we're not only under burn bans, but they're issuing extreme danger of fire warnings. But limit watering anything, because the reservoir levels are way down. Yuck.
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Hi Melissa119!!!! So glad you wrote! Well, I had my first A/C last Tuesday. Felt slightly foggy and had dry mouth and a little metal taste in my mouth later that night, but nothing unbearable. I kept myself well hydrated, drank a super smoothie every morning loaded with vitamins and protein, rinced my mouth every 3-4 hours and load on the lotion after I shower. Took my nausea meds when I even felt even the slightest queezy. I've had an appetite, so no problem there, but my gums are a bit sore.
The day after Chemo, I had a dose of Neulasta. The next day, I had roaming discomfort throughout my body, but nothing unbearable until later that night. I had intense pain across my shoulders and neck along with a pounding headache. Our lovely friends on this board recommended 24 hour Claritin (non D) and advil, and thank goodness it worked! Bearable pain after that. Ask you Onc tomorrow and then stop at the store ont e way home! All in al my dear, not as horrific as I expected, but not a walk in the park either. Just try to listen to your body and give it what it needs, and hydrate, hydrate hydrate!! Short term baby! There is an end to our treatment, and together with our families, the wonderful people on this board, our talented medical team and love of live, WE WILL get thought this!! I'll be thinking of you Thursday... Hugs:-)0 -
Melissa....please try not to panic...i know it is easier said than done...I remember it all too well. Just be sure to alternate the nausea meds. I had to alternate mine..my doc gave me two scripts and I took one then the other four hours later than the other again in 4 hours. I would even wake up to take them. Did just fine. Drink lots of water and have some easy foods on hand like yogurt, crackers, etc. Check out the thread about preparing for chemo and pack a bag to take with you of things you personally want to have on hand. For me I know it was more mental than physical and almost wonder if I did not make myself sick. We are here holding your hand through it all. You are strong and you have got this baby!!!! Now go kick some cancer butt
i just got the email from my PS's office --I have a consult on Sunday with her....I am so excited yet so nervous all in one. Cannot wait for some gorgeous boobies!!
Maggie
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