Message from madubois63

madubois63 · 02-17-2006, 06:20 AM

Thanks for the concern everyone....I am still kicking!!! I've had a few scares, a relationship breakup (I left him) and computer problems. On my last set of tests, the PET and bone scan showed possible met's in my skull, spine, ribs and clavicle. The onc ordered MORE tests and thankfully everything turned out good. A few months back, I had a dip on my MUGA rating and had to take a break from Herceptin. After a three months vacation, my heart is back to normal, and I am back on Herceptin. I also have a new MILD case of lymphodema - nothing to complain about, but something to take care of (more doctors - as if I didn't have enough). I haven't had chemo since December because of very low counts. I have been getting neupogen, nuelasta and a few other things that just haven't been working for me. Soooo, after many months of refusing a triple dose chemo plan, that is the way I am going. Starting Monday, I will be getting triple dose Herceptin, Carboplaten and Taxotere. I will also be getting three days of steroids (ugh) and a series of shots starting 24 hours after chemo. I am still on daily Femara. Now if you are confused...I have Inflammatory BC (1/2000) that spread to my lungs and liver in October of 2004. I have been NED since April 2005....Why am I still getting chemo???? Good question. Because of the aggressive nature of IBC, my onc does not believe I should take the chance in stopping chemo and letting this take over. We have decided that continuous or maintenance chemo is the best way to go FOR ME. I am permanently disabled/retired, so work is not an issue anymore (hard to accept but that's the way it is FOR NOW). My job is staying alive and keeping the beast away. I see a nutritionist and take lots of doctor approved supplements and herbs. I have taken up Reiki and am part of a great spiritual-BC support group. I also post on the AOL BC site where I run a weekly calendar for the "Amazons" (stage IV ladies). Hmmmm, what else - oh yeah, my teenage daughter has taken a liking to concerts. She pays - I drive. She has a part time job at the movie theater and all her money goes for concerts and tee shirts. I figure it this way, I'm not doing anything anyway, she will always remember me for this and I know EXACTLY where she is and what she's doing. Sneaky on my part, but...it works. I used to work at a radio station (many moons ago) and concerts were a hobby of mine - so I really don't mind. If you go to the back of the room, there is always a bunch of moms hanging out. And, I have to say, my daughter has pretty good taste in music. So you see, I have been pretty busy. Sometime the BC boards get overwhelming and I stay away. I appreciate the concern and recent flood of e-mails. I have lurked, but I haven't posted. I PROMISE I will check in more often....I ALWAYS pray for us all...

jojo · 02-17-2006, 09:00 AM

Good to hear that you are taking good charge of your life. :-)

Just a quickie... you are getting triple dose chemo, based on the possible mets of your spine, skull, rib, and clavicle nodes, correct? Will you be getting a repeat PET scan in 3 months for comparison?

Sending warm hugs to you from Sunny California. :-)

RhondaH · 02-17-2006, 09:45 AM

and glad you are doing so well. Take care and God bless.

Rhonda

Lolly · 02-17-2006, 10:03 AM

Dear Maryanne, I'm so glad to hear you're doing well and living life to the fullest, and I mean fullest (is that a word?)! Whew, no wonder we haven't heard from you lately, you've been a busy lady what with taking care of you and spending precious time with your daughter. Thanks for checking in, it eases my mind to know everythings going ok

<3 Lolly

Sandy H · 02-17-2006, 02:57 PM

Maryanne: You made my day to hear from you. I sent you an e-mail but if you don't have time to answer it this one will do. Wishing you well I am your IBC sister from Maine. Your not that far from me in Long Island. Now, you know we keep tabs on each here. Hugs, Sandy

StephN · 02-17-2006, 05:04 PM

The main thing is that your life is going well enough and you have plenty to do besides fight your cancer.
Taxotere was a drug that was hard on me and you have to take the steroids with that one. Hope it will not inconvenience you too much - mainly I had bad flu-like symptoms - just a heads up that you might get this and could be from the cancer drug.

Glad you are finding some on-line friends close to home and that your daughter wants you to have a big part in her life.

I continue to hang in here and will send a prayer or two your direction.

sherri · 02-17-2006, 05:20 PM

Dear Maryanne,

It's great to hear from you. All the oncologists except my own told me I had IBC, and mine was very aggressive too. I was reading all your posts before and was worried about you, but hopping you are doing well. I'm glad you are NED again. LiveStrong Maryanne!

mamacze · 02-17-2006, 09:16 PM

Dear Maryanne,

It is great to hear from you and to hear that you are busy living. Your daughter is the one that my daughters are pea green with envy over...!!! (I give my girls the worried mama talk...don't go to concerts...you'll get in trouble...), and your philosophy is "if you can't beat them, join them!" And you are right...I guess I'll start dusting off my Springsteen t-shirt.....
I'm happy to hear you are doing well...
Love Kim from CT

Maryanne · 02-18-2006, 09:27 AM

Hi Maryanne,

I just noticed you are also on L.I.!
If there is anything I can do or even if you just would like to chat, please feel free to contact me.

Warm regards,
Maryanne

02-19-2006, 02:31 AM

"not doing anything anyway, she will always remember me for this and I know EXACTLY where she is and what she's doing."

Ooh, that's good sneaky

madubois63 · 02-19-2006, 06:31 AM

Jojo - I am getting triple dose based on my counts - not possible met's. My onc is very aggressive with me and does not feel that I should stop chemo - ever again. I had 4 1/2 years of remission without chemo before the relapse. This is a maintenance plan FOR ME. It may not be the best thing for someone else with IBC, but so far it's working for me. I believe (correct me if I'm wrong) Sandy also has IBC, but it has stayed pretty local (not that any of this is easy/less scary or fun). My vital organs (lungs and liver) have already been invaded. We are trying to not let that happen again. I was getting this combo (Taxotere/carbo and Herceptin) every other week for 13 months until my counts dropped and hit a stand still. So - like a diet/exercise plateau - it's time to change the plan around a little. Stick with the same exercise - just move things a round a little. Does that make sense??? As this is a HER2 board, we all have an aggressive form of BC, but I have IBC that is HER2 - which is really the worst of the worst. I know this (chemo while being NED) seems a little harsh, but like many of you have said you would do what ever it takes to stay alive - that's what I am doing. Being me, being 42, being a single mom, being in relatively good health (except for BC) - maybe all these things make it easier for me to handle continuous chemo then someone else. I just don't know. Do any of us really know?? Thanks so much for the replies and concern. It's so nice to know I have friends that worry about me!!!

..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

madubois63 · 02-19-2006, 06:34 AM

Thanks everyone!! You really made my day!!!..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

madubois63 · 02-19-2006, 06:37 AM

Kim - There is always a bunch of moms at the back of the crowd...I'll be looking for you!!!
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

madubois63 · 02-19-2006, 06:40 AM

Maryanne - All my life, I NEVER knew another "Maryann." Now, I know so many. There is another Maryann I met that lives in Smithtown (also has BC) and a Marianne down the block that I have become really close with...You can e-mail me at madubois63@aol.com anytime!!!