Starting Chemo June 2013!?!?!

aaoaao

KatiAK, I also was prescribed potassium due to low levels on my blood tests.  I get Taxol weekly (3 weeks on, 1 week off).  So I guess Taxol can reduce potassium levels.  I also believe it plays a part in muscle pain and weakness.  I hate taking the potassium pill because they are HUGE.  Gags me everytime...I've spat it out on more than one occasion because I couldn't swallow it.  I've been breaking them in half just to be able to get them down.

Robin-Lynn

Hey Ladies, we're on to something! Thank you Ocean - what a nice generous offer, it sounds beautiful and fun. I'm in New Jersey...pretty far but would try my darndest to get there. Celebrating with woman who have been on the same journey would be wonderful. Chemo and radiation end for me around Thanksgiving.

dlm425

Robin I'm in long island and I vacation in seaside heights every year since birth we can meet and go together I'm doing taxol 3 today and I feel so good don't want to go but I will wah '''''' good luck ocean

annika12

I would def. try me best sounds so wonderful:) This group has been a big part of my cancer walk!! My first taxol has so far been so much easier then AC.... but then I won a puke bucket from my chemo nurses for being the sickest patient through there office......I also won't be done until Thanksgiving!!!

Laka

I'm going to my first taxol tomorrow . What to expect? Is it easer than a/c ? I know everyone is different .Has anyone received neulasta shot after taxol. My doctor told me I won't get it after taxol.

aaoaao

I do taxol every week for 3 weeks/1 week off.  I don't get the Neulasta shot.  I haven't had too many SEs from Taxol.  The worst ones are the fatigue and constipation.  I've had a little neuropathy but nothing I can't handle.  I hope you do better on Taxol than on AC.  Keep your head up and the end goal in sight.

Robin-Lynn

Dim - Sounds good! at the Jersey shore! Good luck with your next Taxol treatment hoping for little trouble.



Laka - I'm Getting dose dense Taxol – every two weeks so my doctor insists On the Neulasta shot which is what I think causes some of the bad side effects - bone and joint pain. Your white blood count doesn't drop so low with Taxol so your bone marrow is in overdrive after the Nuelasta. So if you're not getting the shot I don't think you'll feel too bad. You won't get the nausea you get from AC . Good luck.

OceanWarrior

Back from my 3rd Taxol.  Again, a bit of a pin cushion took 4 pokes to find a cooperative vein but we did and the actual infusion part was a breeze and I had a bit of a nap during the 'make you sleepy' part.  Feel like I have a plan to ward off and manage nerve pain if/when it occurs and am hoping for an easy time.  Still really tired now.  Light dinner (soup and sandwich made by hub) then for an early night.  

Good thoughts, care and encouragement to everyone.

VAL1966

Had my 2nd taxotere today ... Was concerned that I wouldn't get it at all because of the vision problems I had with the first tx ... They suggested lowering the dose and I said NO! Anyone else experiencing blurred/cloudy vision, double vision, very itchy eyes ??

I'm finding the taxotere much easier than the first 3 FEC treatments .. I wonder and the pain will be this time as my first taxotere treatment, the pain only lasted about 3 days and it was bearable . I'm so excited that only one more to go on sept 19 then bring on the radiation and let me get back to my normal life . Wishing everyone a great long weekend with no SE xox

Angstapp

Hi Val - I've had itchy, watery stingy/itchy eyes since my first taxotere, it sucks as each time I itch the eyelashes are falling out - arghhhhh!  I was terrible on FEC but have also struggled with stomach cramps with the taxotere, I'm hoping to lower the doasge but am a bit scared by the prospect as I've been googling a bit too much information on triple negative BC and it's scared me a bit with the statistics of recurrance.

dlm425

Goodmorning 3rd taxol felt awful right after with the worst stomach pains. Feel ok today couldn't really sleep from the steroids but I have work today than off for 3 know I will be sick ONE MORE TO GO everyone says and in my head I say one was to much...NP asked me if onc talked to me about radiation I said I had a double mastectomy.

What does he want to radiate. I told her why don't he try some. I sometimes feel they want money more than caring for the patients...

kmurphy

This has been a rough week.  I thought the Taxol would be easier but it's just different.  I had the Nuelasta with the AC and no real problems other than the aches.  This time the doc said my white bc is off the chart high and caused my body to go into overdrive.  This has caused lots of exhaustion and pain.  I would wake up in the middle of the night yelling in pain.  I also had a very short temper and would either snap at people or cry.  That may be part of menopause.  I probably won't get the Nuelasta next time.  Just have to get through today and then 3 day weekend!!  Yeh!!

NisaVilla

Oh boy, so many of us in bad shape from chemo this week!



My SEs are always delayed so, as expected, i will be dealing with stuff between today through Monday. To start, the usual swollen and super-white tongue, metallic taste, chest and lower back bone pain, and the darn neuropathy that has been in for 4 weeks.



Mely - I have those days too. They are hard. We are expected to be celebrating the end of treatments but reminders take away from daily joy. Thanks for details of your treatment, it helps me a lot to read about others.



Ocean - Yeah to you! sounds like you did well. Please share your plan for nerve-pain issues.



Aacaao - Please tell me about your neuropathy and what helps you. Was it ever more and it got better? If so, how,long?



VAL - Never heard of vision troubles, sounds scary. Hope,it goes away soon!



Kmurphy - Wow, I am sorry you are going through so much right now. We are on similar schedule. We wil be sick thru Mondaynand then slowly back to life...may it happen fast!



With so many updates today, I hope I responded to everyone. Best wishes sisters! Long weekend ahead for many of us.



Hugs, Nisa

Dyvgrl

Round four AC down! Sooo glad to have that nastiness behind me. Praying that Taxol is easier on me. My NO gave me several supplements to avoid neuropathy and bone pain. I won't be getting any Neulasta with it. Today is my very last Neulasta shot ever. Hallelujah!!

Laka

Thank you ladies . I'm sitting and waiting .1st taxol hope it won't be too bad. Plus i have a low fever and nasal congestion don't feel good at all. Hope you ladies feel good.

NisaVilla

Dyvgrl - Horray to your last AC and no more Neulasta! Was it today? Enjoy your next yummy meal before metallic taste sets in. Please share what was recommended as supplement for neuropathy if anything other than B6.



Laka - I hope you can visualize the end of treatment so today is not so bad. Distraction by talking and reading helps me during infusions. Taxol seems tolerable to some... Hope that"s the case for you too.



Hugs, Nisa

aaoaao

NisaVilla..I haven't done anything for the neuropathy since it has been very mild and my MO is just keeping an eye on it if becomes more predominant.  I hope you have very few SEs on Taxol too. 

KatiAK

Laka - I hope your Taxol tx goes well.

Dyvgrl - Wahoo!  AC is over.  That is some nasty stuff!

I'm still doing the neulasta shots after Taxol.  I find it interesting that they bill it out at $24000 and my insurance pays about $340 and makes them discount the rest.  Sorry - I'm a medical biller so I notice these things.

I had Taxol #2 on Tuesday and the pain has started today.  Thankfully the mild painkiller takes it from about a 7 or 8 to about a 2 or 3.  Unfortunately it's primarily Tylenol so it's hard on my liver which won't help my already messed up liver enzymes.  I get a vitamin B12 shot the day before my tx.  I'm taking claritin and L-Glutamine and a B complex.  I guess it helps with neuropathy - I haven't had a lot, but other than pain I haven't had a lot of side effects.  I'm not extremely tired, but I try to get at least 9 hours of sleep at night and/or a nap.  I don't have the metallic taste.  Just the constipation, pain for 4 or 5 days, a low grade stomach ache and then the browning fingernails that hurt from time to time.  ("just" hahaha!)

So, in about a month we'll be finishing up chemo and moving on to rads.  I can't wait!  We're nearing the end! But some days I still worry about recurrance and longevity and other cancers.  I hear a thousand different ways to rid the body of cancers ALL the time.  I'm being given advice constantly about not eating sugar, doing body cleanses, taking suppliments.  And then I know of at least two ladies who've had BC a few years ago and they continue with their regular lifestyles, both smoke, etc.

Has anybody else been thinking about where we go from here?  Do we just go back to the same way we were (with more worries)?

Just thinking out loud I guess.  Hope everybody has a good weekend.  I have 3 days off.  Hoping for some down time and yet would like to get some things done.  Might just be lazy.

Dyvgrl

My doc told me to take Eupatorium Perfolatium for bone pain. It's a plant extract. Also L Glutamine and B Complex for neuropathy. He had a few other suggestions for neuropathy but I don't have my sheet with me.

VAL1966

Katiak--- I like you cannot wait to get off this nasty chemo and move on to rads...definitely nearing the end. I worry all the time too about recurrance because I can almost be considered triple negavite because I was only at 1% positive for estrogen, but my onc still wants to treat me with tamoxifen and I've read some nasty stuff it. Like you I wonder about changing life style... I don't smoke, enjoy wine and beer occasionally and well who doesn't love sugar 😄... Well lets get through treatment before we make these decision about changing lifestyles ... If anyone has advice for me regarding tamoxifen would love to hear from you..Have a great weekend everyone 😊

dlm425

Katiak Im right there with you I have to tell you Our lives are changed forever..We will most definitely worry so much more about every test result or any aliment we will have. But finishing up with chemo isthe most important I just cant wait... NP said hair will continue to fall out after last treatment wont start to come back till 6weeks after txs are finished I have such a neck and back ache today. Tastebuds not working and dam taxol makes me nauseous. Not as bad as AC but such a gross feeling. I was always such a happy person and chemo takes me smile away. Cant wait to be happy. Oh and these cindertits are killing me aka tissue expanded:( Enjoy your.long weekend ill be in bed ill enjoy next weekend. NO Pain to all

dlm425

Oh how come my gem of a Dr said not vitamins till after tx. Only allowed one cup of.green tea and only vitamin D. I wanted to take B he said not to

dlm425

As for anyone smoking.cigarette's after any cancer.dx is not taking.life serious.

dlm425

Val my cousin. Like you was low with estro positive and she said tamoxifen isn't bad at all she has no side effects and after menapause you change meds. You can try it ask to be regulated on it. All of it is bad but what choice do we have.

Dyvgrl

I'd read up on the side effects of hormone therapy before taking it. For me, the small chance of recurrence that it prevents isn't worth the memory loss and cognitive function loss that it brings. Chemo brain is bad enough. For me, I can't spend the next 10 years (yes me onc says 10 now not 5) in a mental fog and that loss is permanent. I'm 43 and work on computers for a living. I'm getting a hyster/ ooph done after rads so I will have little estrogen left in my system anyway. So this girl isn't doing it. Just be educated with all these treatments. They aren't always necessary.

raindeer1217

When I walk by a mirror or a window and catch my reflection in passing, I startle myself. Thinking in a fleeing moment; poor woman. Then I realize that person is me.



I haven't cried but two times on the journey. I've managed to keep my shit together. Strong head held high keeping that ever positive smile in place, laughing joking even in those real lonely scary moments.



Today. I feel great. Took my doggy Beans for double track 30 minute mountain bike ride. It's a pale comparison of the rides I used to do.



Beans n I got back from our ride passing a large football field where practice was in session, I made sure we skirted as far around from the field as possible hugging the tree line. We made it safely to the parking lot just in time for practice to end. Normally I hold my head high and baldness and all. Today I found myself sitting in a far bleacher back to the kids and parents patiently waiting for the masses to get In their cars and drive away. While I sat back turned alone petting my dog.



And cried.



I took a picture of my self on my iPhone. I hardly see the person I used to be.

annika12

Raindeer- I cried when I read your post, we are so on the same journey!! But one day we will be our selfs again only stronger and more compassionate !! I used to be social....love to talk to new people...old friends...just about anyone...now going anywhere is a big to do!! I have my good/safe friends I love to see but I have a hard time feeling like I fit in anymore!!! But one day soon.......

aaoaao

Dlm, I don't know why your doctor doesn't want you to take any vitamins.  My MO said everyone should take a daily multivitamin when my son asked her if I should be taking them.  Maybe there is something in most vitamins that concerns him/her.  You should ask what about the vitamins bother him.

NisaVilla

Rain - your writing seems to capture, with such eloquence, everything I feel and think and suffer through. I would not be surprised if you write poetry. I thought of you this week and wanted to ask how is the transition to your new place going?



I have a before-the-cancer-tsunami photo of myself that I look at frequently. I do not recognize myself either. Hang tight, we are going to get through this - we have to!

KatiAK

Oh Rain - you made me cry too.  Only because I can relate SO well.  I even go grocery shopping early in the mornings, hoping to avoid people.  Wasilla is a small town so everywhere I go I see people I know.  Some are okay but I get tired of explaining, explaining, explaining.  Thank you baldness.  I have heard that those of us completing chemo/rads at Thanksgiving probably won't see growth until at least Christmas.  sigh.

Yes, we are changed forever.  But like I tell my friend who completed this journey before me, I can't wait to be some one else's hope.  I hope to give strength to women who must face this dx in the future.  I know several women who've been on this path before and are living a full life now.  Deedee Jonrowe is one well known Alaskan (Iditarod musher). 

I have always been a strong (physically) woman.  I do the "upkeep" chores around here - mowing the lawn, etc and usually ride 3 horses a week.  I haven't done that this summer.  I just tried to mow one small portion of our lawn and just about died!  I am SO out of shape!  I'll be one of those New Years resolution people I guess.  Pray for muscle memory! 

Yep - we've lost ourselves, but we'll get us back.  We'll be stronger, we'll be wiser and we'll be there for some one else! 

I take a lot of vitamins.  My onc said I could continue anything except anti-oxidents.  It would be nice if these guys got on the same page and then were able to explain to us why we're on that page!