Starting Chemo May 2008

kerry_lamb

Lewing.....have you been looking in my windows.............?

otter

Well, there is only one thing to say about everything I've read here:  it's obvious that y'all are in need of some BIG hugs.  So, here's a hug--grab ahold for awhile, and then pass it on.

...............HUG................

otter

Sable

Dang it! At my onc visit last week he looks at me and says "have you had any problems with mouth sores on taxol yet?" I looked him dead in the eye and said "No, but thanks now that you said that my body will think its a good idea now" He laughed it off....... guess what I woke up with today????? Flippin mouth sore...grrrrr How long does it take for these things to heal up anyway??

ellenoire

Heal up?

I had them for 4 months darling. 

I still have what I think is scar tissue far far back in my mouth from a mouth sore that got so bad I had to have antibiotics during my first chemo. I can feel it when I open my mouth to ...uh... eat. 

 If you gargle a lot and use a non SLS toothpaste you should get it to clear up soon.

Eat yogurt too, it might be yeast. 

  xoN

ewesterman

Kristy,

too long. Careful what music you listen to as you may associate it with unpleasantness....maybe listen to crappy music...it's like eating food you love with metal mouth or when you feel yukky...you may develop an aversion. Sorry for all that sitting still.

Kerry_lamb....welcome and I am maybe the only one on here who says fuck and thinks it's fun. If a person cannot say fuck related to cancer, when can they say it? Welcome and I love your writing.

Everyone else, my hair is NOT half an inch or 3/4 but my feeling is I am late to this game and just having hair is okay, right Jen? Eyebrows? NO. Eyelashes? Three. I am going to draw my eyebrows on tomorrow in a shape of a graph and see if anyone notices.

Each day is a bit better. It's incremental, but better knowing my next infusion is herceptin solo NOT chemo. Ciao..thinking of all of you. Chemooooooooo to those finishing and those going tomorrow. Roxi, hope the heceptin by itself was easier than chemo...Linda, stealing that poem to post on my blog...strike goes on. THey'll get an injunction tomorrow, blah, blah, blah. Talk later...Kerry....got any bald photos? Though your hair is lovely. Ah well. Ciao. 

drcrisc

Kerry - Welcome!  I think you are just the energy needed to infuse us!  And absolutely congrats on the eye/hook accomplishment!!  BRAVO!

Eddie - Glad it's continuing to get better for you.  Keep on truckin'...

Jen - Ow. Owie. Crap.  I've had a really sore mouth the last couple of days also, so today was mostly soft foods and even those hurt.  Feck.

Linda - LOVE the poem!!  Even though I only had one dose of Taxotere, it was definitely not my friend!! 

Gracie - How'd it go today?

Rock - Hey there!  I got nothin' else, but that'll do, right?

Otter - Passing around the............HUG.......................

Now for my partner in crime for tomorrow, Randie - Hey!  We're off to Antarctica!!  You will be posting some pictures, right?  I'm on the other page now and can't remember everything you said, but here we go!  Dh and I are going to have breakfast and maybe go tree shopping (?) (his idea, not mine) before the fun starts.  I go in late, 11:30, so it's going to be a loooooonngg day.  We won't be out until at least 5:00.  Chemoooooo!!!!

Gracie713

Waiting for Cristine and Randie here in Antarctica--the cool breezes are great for the hot flashes!

Last FEC went well-probably better than the previous 5.  Mild nausea starting, but have taken the Emend.  Have to go got Neualsta shot later this morning and driving myself since DH has to go to Louisville, so am trying to not take the other meds unless I have to.

Cobraing my insurance so for the next couple of weeks, I techically don't have insurance until they finish the paperwork-had to pay for all our prescriptions this month (one of DH's is $219-that's just one-total was $624).  Luckily onc gave me a voucher for the Emend-saved $256.  The other good part is that the insurance co. will reimburse everything that I have had to pay for!

Haven't had any  actual sores in my mouth, but tongue will get to feeling like it has been burned, irritated.  I have Magic mouthwash that I use faithfully and use Biotene. 

Jean-just wanted you to know that I am still holding you close and saying prayers.  

Love the poem Linda!   Next treatment I start Taxotere-may print it out and put on my fridge!

To the rest of my BC sisters-I hope that you all have a great day today!

familyroks

Randie - WOOHOOOHOOO!!!  Last Chemoooooooo!  Happy Day!!

Sable

YAY Randie!!!!!!!!!!!!!!!!! Last day of chemoooooooo. I'm in the water holding my hands out to ya girl!

ranD

Thanks all!!!!

Cristine, Mine starts at 2, so we leave at noon and then we celebrate by going out to dinner afterwards.  My 2 chemo pals are going with me.  I am bringing a camera, not sure what the pic will look like! Lets hope the infusion room is not backed up because I want out as fast as possible!

To prepare for Antartica, I a eating a nice big bowl of oatmeal, then I decided to take the day off yesterday, so I will be trying to get a btch of chocolate chip coconut cookies and then oatmeal to bring in.  I think I will go out for cheesecake,

see you on the other side! randie

Sable

Cris ~ do you have one more after this one or is this one it? Good luck today!

angelsaboveus

Good luck today Randie & Cristine. Way to go Randie on this being your last one , it really is a nice view from this side.

Jean my heart goes out to you and sending hugs as you go through this hard time.

Linda great poem, I can relate to every line in it ! So glad it is all over. Was feeling really good with the next step, with chemo behind me , really at peace with it all....then i see my onc for the last time before i go and he lays some info on me about a trial that he wants me to look into. He sends me home with a whole handfull of info and now my head is swimming. The head of it is in Kelowna where i'm going for my rads on Sunday , so he thought if i was interested i could have a consult while i was there.

It a Phase 3 trial of Bisphosphonates . It is hoping to show if two drugs ....Zoledronic Acid & Ibandronate are any better than Clodronate in helping to prevent or delay the spread of cancer to the bones. It is a random trial , so you don't know which drug you would be getting and you would be taking it for 3 years and being followed for 10yrs. And you wouldn't really know if it would be any benifit at all to you until they have stats 14ys later. As with all drugs they all have side effects , and one nasty one ....which they say is not common but present...osteonecrosis of the jaw (permanent damage to the jawbone...ouch! )

So right now I am leaning towards saying no, as I was comfortable with the action I had already taken and feeling good about leaving it all behind after rads. I just don't want to have to deal the extra side effects be it as small as they might be. With my luck i would be the one to get the jaw problems and just don't like the loss of control in not knowing what drug i would be getting. I just wish he hadn't layed it on me now as the brain goes in overdrive as you consider all the options. Has anyone been in this trial or taken any of these drugs ? Any info would help. I believe the Zoledronic acid is also known as Zometa. I do want to make an informed decision.

Sorry so long, hope everyone is doing well and plugging through , good luck to those with chemo or rads ahead. !

drcrisc

Hey Randie - Mine got pushed back to 1:30, so I'll be right in there with you!  Hope it goes o.k.

Jen - This is my second to last - one more October 2!!

Angels - Hope the rads goes well and it seems like I have heard of Zometa, so there must be other clinical trials somewhere.  Is there a thread for that?

See you all later!

Hood1980

Hi Angel,  I haven't started the Bisphosphante clinical trial yet but my onc gave me the same papers and asked me to consider it....saying that I am an excellent candidate.  I guess I am less worried about evil cancer spreading to the bones than I am it spreading to the other breast and ovaries.  I wish they would take them out so I wouldn't have to worry about that, then I could consider the bisphosphonate clincial trial.  I know what you mean...to much to think about and my head starts to hurt!  Dr. Otter, please help us!

sueper13

Happy Thursday, all...it's almost Friday, thank God!  I am soooooooo tired..I did too much yesterday and woke up with swollen ankles.  Worked all day, just got home, and am sitting in the recliner trying to stay awake long enough to type this!

Linda, love the poem. I'm sorta glad I had the taxane (Taxotere) with my AC, now that it's over. I saw my onc and she says the swelling and bone pain can last for months, not what I wanted to hear.

Otter, good to see you! How's the hair?  I have a confession to make.  I am just over 5 weeks post-chemo and still have eyebrows and eyelashes....who knew? Think I'll actually get to keep them?

Jen--so sorry about the mouth sores, they were hands-down the worst part of chemo for me.  Heal, sista!!

Noelle, where are you getting your energy? It is all I can do to work five days in a row..*whine*

Gracie--Randie--WOOHOO last chemo!!! Pole dance pics coming soon?

I still think we shoud all get together..where exactly is everyone?  We could at least figure out what would be a good place to meet that is sort of in the middle...you have all helped me so much and I would love to meet all of you in person.

Anybody I missed, I am sorry--I still have chemobrain.

Love,

Sue 

kerry_lamb

Hey girls,

Yesterday was my lowest point in the whole debacle. I noticed on the dex box that they doubled my dose, so the letdown must have been twice as bad..anyway today I feel better, the shite from the neulasta has worn off and there's just joy on this board!  and there is a great thunderstorm going on here. (My family loves a storm.)

Re Zometa: I am lucky enough to be on the batphone to possibly the most respected modern oncologist/chemo king in the southern hemisphere. I have thoroughly quizzed him about zometa, and he is really excited about. His bottom line is, if it was his wife she would be on it in a flash. Here in Australia there are no trials for it..we have to pay, and it's not approved for bc, only osteoporosis and only on the free list ONLY IF YOU'VE BROKEN A BONE FROM OSTEOPOROSIS!!, for feck's sake!

I am paying, and starting on Sept 26 (MY LAST CHEMO) (Have I mentioned that once or twice?) 

I'm so excited that you girls are finishing! Proves it can be done, and I need proof this week! 

Sable

Cris~ your last chemo is the first day of my herceptin. We will be buddies that day!

Welcome all the newbies! It's nice to see all the fresh faces :O)

My mouth sore is feeling a bit better today. Hopefully it will go away soon. I really don't want it to set up house or anything, especially not bring friends. Got up this morning feeling like crap. Stomach hurt and just dragging like crazy today. Wonder if it was my "first time in 8 years" alcohol I had last nite. I feel a tad better now... had a teeny nap earlier.

I was living dangerously earlier. Had to make a cake for hubs to take to work tomorrow.... I licked the bowl! raw eggs and everything, mwhahahahahahahahahaha. I'll probably pay for that as well somehow, it was nice to be "normal" for the moment.

Ladies don't forget to post your pole dance pics for me, I don't want anyone left out. Or if you don't have a pole dance pic a nakkie head pic will do just fiiiiiiiiiiine.

chemoooOOOOoooooooooo/tawanda!

familyroks

ROFL at your avatar Sable!!  You slay me!

ewesterman

Randie ---woooo hooooo!

Crissy --- one more down and ONE TO GO!

Jen, I think your new hair is longer than mine....see...mine came in faster, but yours is growing faster. LOVE THAT AVATAR!  

Sue, whining is fine. Glad you're on the recliner healing.

I found out today that my insurance will cover an unlimited number of bras and that Nordstrom will let me pick ANY bra and sew in a pocket for my FOOB. I may even get two foobs, but if I do, I promise I won't try to wear them at the same time. Angels...are you already in Kelowna?

Noelle,

There is some piece in our newspaper about collaborating between Seattle and Toronto. I want to tell them we've been collaborating all along -- after all, you got me to use a washcloth in the shower.

Kerry,

September 26 is RIGHT AROUND THE CORNER. We are waiting patiently just as we are for OCTOBER 2. 

Love you all. 

lewing

Glad people liked the poem!  It was fun writing it . . . some of it was pulled more or less directly from this thread.  (Kerry, maybe that's why it seemed like I'd been peeking in your windows!)

Angels, there's a thread on the bisphosphonate trial under the "Hormonal Therapy" topic . . . I think the title is, "Zometa Trial Study."  You'll find some good discussion there, including from Dr. Otter.  I had an (inconclusive) conversation with my onc early on . . . my second opinion pushed this trial, my own dr., not so much.  I guess I should ask about it at tomorrow's appointment.  (How's that for wild enthusiasm?  I guess I'm at a point where, as grateful as I am for ongoing clinical research, all I want to do is grab my rx for tamoxifen and disengage from the medical profession for awhile.)

Sue, enjoy those eyebrows and eyelashes.  We all know you'd share them around if you could.  (You would, right?  RIGHT??)

Jen, I know what you mean about living dangerously.  Guess what I did this week: ate feta cheese!!  and eggs over easy!!!  (Not at the same time, though.)  Afterwards I realized that, as far as my body is concerned, I might just as well still be in chemo (three weeks out today, the same as the interval between treatments).  But mentally, I'm in a different place. 

Randie, CONGRATULATIONS!!!!  You did it, girl.

Linda

KristyAnn

Jen,

I am working on getting a nekkie head shot for the pic - please send me a link so I can see what is there so far!

Kristy 

otter

Hi, all-- 

Sue, I think a reunion would be great, but is it OK if I don't come to Texas in the next few days?  Things sound sort of busy there, right now.  'Course, it's a big state, so even if part of it is being blasted by Ike, the rest should be OK.  I hope you're in a safe spot... 

Oh, and I hope you get to keep your lashes and brows.  Did you pay homage to the proper authorities?  Apparently I missed that memo.  My lashes and brow hairs started falling out around.... (drumroll, and big sigh):  week 5 after my last dose of TC.  The chemo regimen you're on might make a difference, though.  The good news, like everyone says, is that the eyebrow & eyelash hairs come back a lot quicker than anything else.

Angels and Hood, my med onco gave me the info on that bisphosphonate trial, but I declined.  She hit me at a bad time--3 days before I was scheduled to start chemo.  I didn't realize one of the options was to wait until the chemo was finished before starting the bisphosphonate trial.  I thought I'd have to do it at the same time as chemo, and I thought that would be too many SE's for my poor mind and body to handle.  (I was probably right.)  Now, though, waaaay too late, I'm wondering if I made the right decision.   Everybody always says, "Make a decision, and don't look back!"  How can we do that???

BTW, here's an NCI website describing the bisphosphonate trial you're talking about:  http://www.cancer.gov/clinicaltrials/SWOG-S0307 

Rats, Jen--mouth sores, huh?  That sucks.  Use that magic stuff.  I was lucky--I never got mouth sores, but I did have a sore mouth and tongue through the first week of every cycle.  Another gift from Taxotere...

Randie, hon, here's a towel.  How was the water?  (More importantly, how was the cheesecake?)  I was splashing around in the river all day, waiting for you to get there but having great fun in the meantime.  The waves were a bit higher than usual--must have been because of that darn Hurricane Ike...

Hugs to everyone!

otter 

SherriM

Hello to all!  I haven't posted in quite a while, my ds was here all last week and then I was able to work monday, tuesday & wednesday, so haven't had much time to get online...now I'm 5 pages behind! 

Today I had my 4th and final tx.....woooooohoooooo!!! 

Linda, even though I know I've got another 10 days or so of yuckiness, I can relate to what you say about being in a different place mentally.  They had problems with my port today, and I won't detail them, but when they started talking about delaying my tx and running dye tests on my line, I freaked.  Long story short, I told them we were doing the tx today even if they had to start an IV.  We did use the port and all went well.  There was no way I was going to agree to delay it--I was too psyched to get it over with.  

Well, I'll be on steroids for the next 5 days, so I'll have plenty of time to catch up with those missed pages.......:-)

Blessings and hugs to all,

Sherri

Sable

You still have to hold my head a certain way, in the right light and the moon has to be in a certain fase to see it.... but at least there is something growing. My eyebrows aren't doing too bad. I have (goes to count) maybe 10 on one side and 15 on the other about 1/32 of an inch long coming in. Eyelashes..... I "think" I see 1 new one coming in.  I have one eye that is just sparce on the top and 1 lonely lash on the bottom. And the other sparce but the center is bare and 4 lashes on the bottom all huddled together singing campfire songs. My aunt came to visit the other day and told me how nice I got my eyebrows on and how pretty they were. I told her all those years of oil painting lessons finally paid off. (I knew how to how the brush har har)

Sherri~ Congrats!!!!!!!!!!!!!!!

rock

Jen --- You, your baby hair photo, and your post have made my day.  ("huddled together singing campfire songs....")

Randie -- HURRRRRRRRAAAAAAYYYYYYYYYYYYYYYY!!! Whoop whoop! Randie had her last infusion-- WHOOOOOOOO HOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.

Linda -- Your poem is like a candle in a window, like a bright shining star, like a post-it atop jen's head or a pole-dancing woman on chemo, like Otter and her river metaphors.... it just makes me happy.

I'm going for a walk. I find I feel less panicky  if I compose my to-do lists while I'm on a walk rather than while laying awake in bed at 3 am.

ellenoire

I can just see Rock now, walking through the streets of New York composing to-do lists smacking into people while trying to walk with her head down and write in her notebook at the same time... Excuse me! Pardon me! hee hee!

ellenoire

Yup Rock ( re comment on the Road to hell thread) I did a 10km workout with a friend. It was his pushing that made me do the distance. It was not an event, just a workout(well it was an event of sorts given that I have not done a 10 km since high school)

Siouxie- re energy. 1) I generally have more energy than the average person. Working 12 hour days with no real break was normal for me B4BC. 2) I am now 8 weeks out of chemo 3) I am a tenacious pain in the ass and push myself too hard 4) I try really really hard to eat lots of small meals with almost no white carbs which keeps my energy level up

Chemooooo! to Cris and Gracie and Randie and Sherri

 Randie and Sherri I hope you got to shore with a minimum of drama! 

Jean, I was thinking about you and Sue's comment about the 'luxury of notice'. Sue is right, once the loved one is gone despite the notice it does not feel the same as a sudden death. My feeling has always been that the shock of a sudden death shifts the grieving stages. I think the "luxury of notice" allows the ones left behind to be a tiny bit more peaceful about things sooner. My friends 17 year old son died a few weeks ago( I mentioned him earlier)died in his sleep of an aneurysm, and her grief has so much more anguish in it. I dunno, I know how I dealt with it, and I just hope that having that time with Ruby made the process seem a little easier. When my mom died I watched her go, I watched her drift away in the last few days. She needed it to be over and it was like our river analogy almost.... she was swimming away to another shore where there were happy people waiting for her to come I was standing on my shore waving with tears streaming down my face, happy to see her go but still desperate to drag her back. 

  Eddie, what are Toronto and Seattle collaborating on? I am curious now!

 Linda, may I also steal your poem for my blog? 

ok, I am determined to get a lot done today. 

 Chemoo and Hair growth to all. 

xoN

ranD

Hey all, splashing around on the other side. Loving the water overhere....

Noelle, you had to talk about drama...here goes.

Okay started the day by sending dh and kids to their once a week classes, so had the whole huse to myself until noon.  Baked  coconut chocolate chip shortbread cookies and then took a basic oatmeal cookie recipe and added cocoa powder, chips and cocnut...very good, they are a winner....lol

Got to the Cancer Center for my130  appt and didn;t see the dr til 2 (same time as my infusion). Doc said nodes and breasts were clear, released me to see the surgeon next thursday. She know is okay with removing bth breats and the ovaries and thinks maybe can be done at the same time.  Also scheduled me with the dietician and a radiologist after surgery.  she now thinks I am int he gray area and will lt the rad make the call.  My dh wants me to go if I am in the gray, just so I won.t look back later nd wish i had, I am on that train as well.

Got to infusion about 1/2 huor late and they had no nurses available to stick me, bummer, lol, but, they did put me in the only single room since it was my last time and toldf us to party hardy, lol.  I was told that I was considered the fun patint and they loved to eavesdrop on our convos.  The cool room had a tv that got local stations and , DRUM ROLL, it had a bathroom that I could reach without unplugging the pole...I LOVED IT...Crap, why couldn't I have had it each time, I actually sleeped thru most of the seewsion.  They didn't start til 4, but after a half hour,they bumped it to max speed, so I was out of there in 2 1/2 hours.  No bad SEs from the hyper-infusion, I just seemed to sleep better, lol.

Afterwards, we went to Black Angus, I had a huge Caeser salad and we ordered 2 sets of their garlic cheese bread.  Best part?  I convinced the waitress that since it was last chemo, i shouild get a free dessert, and I did....YUMMY creme` brule.

Got home at 9, watched all my TIVO'd shows and slept or about 3 hours before Mr. Steroid woke me up.

 So that's it until I start the vicodin coma tomorrow afternoon. Hope yours went well, Gracie, Chris one more who hoooo, and its the day after my birthday, so there will be cake waiting for you.....

randie

pole picture coming

Sable

Randie~ oh man I needed a good laugh today, I needed that. You sound like me conning your way into a free dessert! ROFL!

drcrisc

Oooo, cake from Randie, now there's an incentive!!

Mine was rather uneventful just very, very long...we didn't get out until six and it took 3 pokes (veins are rebelling!) to get the IV in - and she had to use the 'baby" one besides, which meant we couldn't just zip along.  Oh well, all done now.  Steriods kept me awake until I drowned them out with other meds. 

I have to teach today (ha!) so we'll see how that goes.  Just a quickie to say I'm o.k. and HIP HIP HOORAY FOR RANDIE!