Back on the Taxol Train for ME

[Sheila]

Boy, I feel like Cinderella....I just knew the clock would strike midnight! Tried everything to get the insurance to pay for Abraxane, but they won't until I fail on Taxol. I received a 2 month vacation from it, after 10 months straight of treatment....it wasn't the Taxol but the steroids making me swell like Violet in Willi Wonka, shortness of breath, bloody noses...all the nice things, oh and the neuropathy and indigestion...I was hoping the darn nodes would behave, but in just 2 months, they are back like crazy in my neck....NOTHING SEEMS TO WORK....no sing of mets to any other organs, but there is a suspicious area on my left hip....I am praying that it is arthritis!!!! So 12 hours today for Dr visit, tests, blood counts, Decadron IV pUSH, Benedryl, my every 2 week Taxol and my best friend, the Herceptin....the countdown begins again till I lose the 1 1/2 in of growth that resembles real hair instead of bird feathers...the fight is ongoing...and through a few tears, I am not giving in!!! This must be the weepy week for many of us.
And I am blessed with so many BC experts to talk to here....I Love You All because you truly understand all of this!

[chrisy]

Sheila, sorry your taxol holiday was only long enough to give you a TASTE of how nice it is to have a bad hair day. Much as I know you hate getting back on that train, taxol not failing you is of course a good thing. And only a breast cancer fighter would hope for arthritis!

I know how discouraged you must feel...and at the same time I know your next step will be to get really pissed off at that dumb canser and then it better watch out. Have a good cry, then suit up with that pirate bandanna...

I'm sure you've considered this, but have you ever tried to maybe reduce the dose on the decadron? I used to get it as an IV drip and after a couple of weeks I asked them to drop the dose, and they were able to cut it in half. It helped me a lot - I used to get a cherry red face the next day - and of course kept me from being up all night wanting to clean house or something. That of course, is my husband's job!

Hang in there, my sweet sister.

Love
Chris

[Julie2]

Shiela,

I am sure you would have thought about it but is there any way to do surgery or radiation(I read somebody did cyberknife for their mediastinal nodes) or someother thing locally than to be on a chemo? If only one area is getting affected repeatedly why can't we treat it locally? You have been on my mind latley and this is what I keep thinking about you.

Julie

[dhealey]

Shelia, Hang in there, as the Bruce Springsteen song says" there are better days ahead.

[Bill]

Sweet Sheila, I'm sorry about the Taxol/Abraxane thing. You are such an incredibly strong warrior. Keep fighting the good fight! And when you feel low, and down, just take a deep breath, and look out the nearest window, and glance out at the stars, moon, or sun, and know that we are all doing the same, and praying that our Love and Light will be reflected from our spirits into yours. Love, Bill

[Gerri]

Shelia,

I was just wondering about you and if you were still on chemovacation. You are another one of the SUPERSTARS of this board - so positive in spite of your endless battle. Sorry to hear that you are having to get on board the Taxol Train once again. Chrisy had a great suggestion about the decadron. I'm pretty sure I only had to have it when getting AC. I believe with Taxol the only pre-med I had was Benadryl - but then I could be thinking that just because I didn't have to take it for 3 days post treatment like I did with AC. Hope it can somehow be made more tolerable for you this time around.

Thanks for being such an inspiration to all of us here.

[Becky]

Awww rats Sheila. Those nodes seem to be so pesky. I wish I could be there and give you a big hug. Know that I am thinking about you.

[Joy]

You are so tough and I know you can do this, but geez I'm sorry you have to do the dumb taxol. And it makes me CRRazy that insurance can be so dopey. Maybe some of their decision makers should have to jump through the toxic hoops to know why streamlining is so importatn (I know that is not a nice thing to say, but sometimes they aren't nice). I am thinking of you so much and hoping the decadron issue gets resolved.

[Jean]

Sheila,
geeees, enough already....these insurance guys really annoy the heck out of me. I am so sorry you have to
get on board....the trian...please know I am thinking of you.

You are one strong cookie....yet sweet and soft at the same time...make sense? Anyways, you know what I mean....just know there are many shoes to buy sweet friend...and they are just waiting for you.

Hugs,
Jean

[Mary Jo]

Hands folded in prayer for you sweet "sister" and then arms opened wide to give you a big, gentle hug.

Love to you.......

Mary Jo

[sassy]

Sheila,

I am so sorry you are having these problems and must go back on Taxol. I hope you can reduce the Decadron. When I was on it, I skimmed the algea from our small lake! I couldn't do that now by any means! Maybe you have some "chores" to do?!

[Faith in Him]

Shelia,

So sorry you have to get back on chemo. I am thinking of you.

Tonya

[Mary Anne in TX]

Sure wish this one could have passed you by, Sheila. You've been in this line already! I'm sending prayers, hugs, and whatever silly thing will make you smile. Much love, ma

[madubois63]

Sheila - can I ask what insurance you have? I am VERY lucky to have medicare. My doc gives me what I need. Medicare denies coverage. Then we (doc and I) write letters why I needed the treatment they denied and then after a few months they cover it. Happens all the time. I am lucky enough my doc works with me, but then again my treatments are huge in cost and he always gets paid in the end. Good luck sweetie. Believe me, I know very well how much this stinks. I've been bald six times, and just this week I was able to pull my hair back into a small pony tail!!!! Hang in there!!!!

[Unregistered]

It's me - StephN - across the state at Mom's.
Just wanted to peek in and found this post that I can't ignore.
BLAST those darn nodes. I think you should start working on a transplant and get rid of them.
Did you try Abraxane? Can't recall just now.

Yes, back to owlet down for hair. I still miss my very short hair at times. Have one friend who never lets hers get more than 1 inch long. It is really cute, even though she is now 10 years passed her treatment.

Just keep that fighting spirit hanging tough. You know we will be thinking some VERY nasty thoughts for those nodes to behave or else!

[harrie]

Ok Cinderella....like the Daniel Powter song (Bad Day)...

Cause you had a bad day
You're taking one down
You sing a sad song just to turn it around
You're coming back down and you really don't mind
You had a bad day

I use to play this song over and over and over again as I was kick'n ass during those chemo days. It gave me strength!
I know you are a fighter just like us and you have this huge support network right here cheering you on!!
Before you know it you will be enjoying your Blue Sky holiday! I just know it!!
Aloha,
Maryanne

[Pam P]

Sheila -
I read your posts often. I'm sorry to hear both of the insurance issues and your return to taxol.

I want to tell you that I'm on taxol & avastin. I've just had my 3rd weekly treatment. I've really hated decadron side effects from previous treatments so I asked the doc for reduced dose. The 1st tx I had 10 mg, 2nd tx 5 mg, and 3rd tx no decadron. It went fine so I think he'll say I won't need it for other tx. This was all in the pre-meds; I don't take the pills either. Maybe you could try a reduction & see how it works.

Wish you an easy ride.

[Sheila]

Thanks to everyone for all the love and support.... always know I can come here anytime of day and find love, support, answers....
This morning, I do look like I was in the sun all day yesterday, lovely bright red face...oh the marvels of decadron...I do live on a large pond, but I have not skimmed it yet....no swimsuits for this decadron enhanced body! The plan is already in place to continually reduce the decadron and hopefully the benedryl so I can drive myself to treatments...this week is was 8mg Dec IV, 50 IV Benedryl...same next time, then 3rd RX 6mg Dec and 25 Benedryl....that for 2 sessions...hopefully being able to wean the Dec down to 2mg per RX. I won't miss the butt burn at all from that stuff!!!!

[caya]

Good luck Sheila. I'm sorry you have to go through this, but as the warrior you are I know you will come through with flying colours.

all the best
caya

[Patb]

Sheila
My thoughts are with you as you start down another
road on this journey. May this road be paved with
healing and better days for you dear sister. I will
be thinking of you and sending good thoughts your
way.

patb

[Pam P]

Sheila -
Do you know if they'll ever reduce the benadryl below 25mg? or is that the lowest they'll go? I got the decedon eliminated, but I'm SO tired for a couple of days after tx & think if I could do less benadryl it would help.

[Sheila]

Pam
The Benedryl is the downer in the premed group....the 50 mg knocks me on my butt! I am wondering if I will feel the same on 25...but it hits so fast when it is direct into my port...like mainlining benedryl....they told me the lowest they will go on the decadron is 2-3 mg....they said I will always get some. What dose of Taxol are you getting ad how often? Just be sure to keep your B/P in check while on the Avastin...it made mine go super high...had to go on B/P meds!

[Barbara H.]

Hi Sheila,
Have you asked about the Herceptin MCC DM1 trial. It would greatly improve your quality of life and many are doing really well on it. I know I couldn't handle taking all the taxol.
You continue to be in my thoughts and would wish you could get more of a break.
Best wishes,
Barbara H.

[Sheila]

Barbara
I will ask when I see the onc. again in 3 weeks...it is so promising to see your good results with this drug....and minimal side effects and best of all no pre meds!!!

[Pam P]

Sheila -
Since I've been able to get the taxol without decadron it has helped. Once you are at 2 mg I hope the effect will be minimal.

When I see my dr. before my next tx I'm going to ask if I can get a lower dose of benedryl too. Last time it was 25 mg & it still wiped me out for 2 days (probably hit harder since I didn't have the decadron to rev me up!)

Will they ever drop the benedryl lower than 25 mg? I hope so - even down to 20 might help.

I hope you will feel better next time on the lower pre-med.

[Pam P]

Sheila -
I forgot to respond to your dose question. I get taxol weekly for 3 weeks then 1 week off. I don't know the dose each time. I will ask the next time I'm there. This is my week off -yeah! Already my hemoglobin is 9.2. I'll get an aranesp shot the next time I'm in. And they said to take iron supplements, but I haven't done that yet - I've got enough constipation issues with this as it is. My hair is starting to come out now too.... oh the fun never ends!

[mimiflower07]

hi sheila
Just thinking about you this morning...how are you doing. Stay strong!!
You are in my thoughts
Suzanne

[Believe51]

So sorry about your problems and the need to call off your vacation for now. Wanted to let you know I am thinking and praying for your well-being. The twists and turns on this journey is exhausting and I know you are tired but not tired enough to beat the heck out of these nasty cells!!! Just cannot stop thinking about you. Holding you close to heart as always. May there be some ease for you in the very near future! Lots of love Sheila. You are my hero.>>Believe51

[chrisy]

I think she meant you're not TOO TIRED to fight that stupid cancer!

[Believe51]

Thanks Love, so glad you know me well enough to be able to know what I am saying. Thinking about you too and so happy you are my friend. Keep that chin up Girl, you are doing great>>Believe51

[GemmaG]

My love to you Sheila. We're all in this fight together. Hang tight!

[Soccermom]

My thoughts are with you too, Sheila...I remember my own journey and it pains my heart to see you slogging through your own. We are here...
Marcia

[michka]

Sending my love to you, Sheila! I hated Taxol but now that I know it worked for you, I love it. The insurance story is just not human.
I will be thinking of you, hoping you are knocking down those d--n nodes again!
Michka

[Carolyns]

Sheila,

Thinking of you and praying for good results. This just stinks that you can't get the drug you want due to insurance bull%#@t.

Love, Hope, Peace,

Carolyn

[Sheila]

Thank you all for all the support in this Taxol trist! I am feeling less run over by a train and ready for the next treatment next week. One more full decadron then the reduction begins. I actually went out and looked at wigs yesterday...I think I am going to be a redhead this time...(this is a perk of chemo, new hair!!!) ....it must be all the talk of Ginger from Gilligans Island that has me thinking red. I am lucky in that my insurance pays for a new wig every year.

[jones7676]

Sheila, I hope they can do something to give you a break in this fight....oh how I know what fun decadron can be. If you don't get an easier dose, I hope all the positive thoughts from this site will help you.

[kareneg]

Your in my prayers my friend, all my love!