Making switch "again"

[IRENE FROM TAMPA]

Hi everyone - have not been posting much this year but always have my eye on how everyone is doing. I have been feeling terrible since the holidays and had a difficult time shaking sinus issues and feeling very very down and tired. Am finally getting past that I hope. My taste buds died about 2 weeks into this combo (which I thought was very strange. This has never happened to me before so early on) I have lost about 10 pounds due to such bad taste. The pounds were welcome but not the lost of taste.

I started new combo in Dec. (Herceptin/Avastin/Taxotere) and was just scanned last Friday. It seems nothing much is happening and my CEA has elevated , tumors about same size but more uptake so we decided to stop and start on IXEMPRA/XELODA beginning this Friday. I think my cancer has found its way around taxanes. They do not seem to work for any longer. My onc. office is opening the Herceptin/DM1 trial but due to my having a little too much Adriamycyn back in 1999 mind you, I am excluded. I was so excited since we found out that Genetech was signing an amendment to the exclusion for more then 3 chemos., but now this.

Anyway, my next option is the Ixempra so we will give that a try.

If anyone is on this combo - can you please let me know how you are doing and the side effects you are having. I hear it is a pretty good drug but not much known since it is so new.

Thank you all again and everyone take care.

[Believe51]

As you PM stated, "I Love You" and I have missed you terribly. I am sorry your in this combo is not your magic potion, but I am praying the next course of treatment is. Cancer is a smart disease and can grow resistant to our ammo but thankfully we have many more options today. Also keep in mind even with that possibility, these can still be vital combinations in our futures. Ed's doctor and Dana Farber were considering him going back on past failures in the future as new combinations are born. WHY I asked, they stopped working in the beginning. Dana Farber said this was not a concern, that much has happened in research for it to be of concern. Still a bit hesitant since there are many things we have not tried and do not feel we are desperate enough to use them again just yet. Not to mention I am praying this is HIS magic potion.

There are a several ladies in chemo that are on or going to be on these drugs in the same combo. Of course you know I will be following them closely for all of us, but especially for you Irene. There are a few ladies here on Ixempra but since it is the end of my day, I cannot remember in what combination. Kareng, Lopsided...

I shall continue to have you close to heart as you enter this part of your journey. Oh, what is...."A little too much Adriamycin??" Ed is going to get 12 total doses, but we are using them in a different than normal manner for BC. You can get more than the 4-6 doses, I have a friend who has been on it in smaller doses for years for another cancer. MY CONCERN: Excluding him from future trials.

Sending All My Love, Prayers and Positive Thoughts To A Very Special Friend>>Believe51

[LOPSIDED]

Hi Irene,

I Sent You A Private Message And If You Have Anymore Questions, Please Message Me. I Have Great Hopes For Ixempra. Just 2 More Treatments For Me. I Will Keep Posting About My Progress. So Far So Good.

[Mary Anne in TX]

Oh Irene, it was so very good to hear from you, but not the news! I was so hoping that the current concoction was IT!!! I guess the right one is waiting to be found this time. I sure hope your sinuses behave and your new treatment is kind to you. Wishing you only the quickest positive response to your new meds and the very best of feeling like a million. And, oh yes....that those taste buds get back to work for you! Much love, ma

[runtolive]

irene.. which herceptin -dm1 trial were you excluded from..
the phase 2 (every 3 week trial) or the newer (once a week trial)

the once a week trial is expanding to a full 100 patients from what i here with fewer restrictions. than the 3 week trial..

what is the name of your treatment facility in florida.

run to live..

[IRENE FROM TAMPA]

The Herceptin/DM1 trial is the Phase II (I believe this is the every 3 weeks)

I was previously excluded due to the fact that I had had so many different chemos (over 3) I found out now that that was amended but one of the exclusions is the Adria. Apparently I must have had a little over what is allowed in this trial. All this back in 1996 too. this was my first chemo.

I just found out today that I was excluded for this. This of course is very disappointing.

My oncs office is: BAY AREA ONCOLOGY and I know the trial cordinator was really trying hard to get me accepted. It do know that the Phase I is less strict but they are all out of Florida which would make it difficult to travel on a weekly basis. I believe the closes I found was in Nashville, TN and when I called they were not accepting any more patience's.

I will keep checking for more trials and also on this Her/DM1 to see if anything changes.

Meantime I need to begin something so hopefully this will keep me at the least stable for awhile.

This board is such a big help I just can't tell you. When I need new information , I just can't wait to get on line with my sisters/brothers because I know they will be there for me.

I love you all - Joe & Christine this board is a blessing for sure.
God bless you both for being its parents.

[MCS]

I, too, don't post regularly and I'm always so scared to find news about us.

I'm so sorry about the progress of this. Don't get tired, keep fighting for all the treatments you can. Your "voice" in the mail sounds like you are very fatigued, but just don't get tired. Keep looking for answers.

My prayers for you

love

maria

[lilyecuadorian]

Querida Irene ..te quiero mucho ... deseo y se que esta droga IXEMPRA/XELODA va a tener tu enfermedad controlada ....sigue haciendo buenas elecciones lo importante es continuar vivo .....I love you my friend and pray for you all the times .....

[Lolly]

Irene, I can relate to the tast buds "dying", and for me it was during Taxotere also. We switched to Taxol and I got my appetite back, so I'm sure it was Taxotere. Now just have to get my skin and nodes under control, or I'll probably be switching also. I'll be watching for your posts on Ixempra, as that will probably be next for me too...

<3 Lolly

[Joy]

I hope this new combination is so tolerable that you bounce right back. I'm curious, Irene, how much adria did you have? I'm still hoping that a trial of herceptin-dm 1 will take you and it will be convenient. What about fractionated cyberknife like Esther is doing?

[PinkGirl]

Hi Irene
I don't know anything about the chemo combos -
just want to say hi and wish you good luck on
your new treatments. It is always nice to hear
from you. Hope everything goes well and you
find the right cocktail. I will be thinking of you
and sending lots of good vibes your way.

[Sheila]

Irene
I am so sorry that the latest combo did not do its job, but I know you will find the right one...you are truly an inspiration to me, you are such a trooper with a great attitude....you are usually one step ahead of me on treatments...I have learned much....just wish this nasty disease would cut you some slack, and give you a break.....you are in my heart and prayers dear friend....I know you will overcome this setback.

[rinaina]

Irene, sending positive vibes and prayers that you get some relief. You have endured so much and have been such an inspiration to so many. I sure hope you get the break you deserve.

[chrisy]

Irene,
Well poo on that.
Interesting combo you are trying - and I think you and your onc are right to be monitoring this so closely. I think of you every day, and hope that this one will change the direction for you - it may well do so, being a completely new agent that those complacent cancer cells haven't seen yet. Remember how the new combo of tykerb/xeloda shocked them - I hope that will happen with this new pair.

Hang in there, my friend, we need your smiling face here!

[SoCalGal]

Irene-
Oy vey mine frient. Vey es mere and feh feh feh. Zuk-us der cancer-schmancer a gay kish-mere-in-tulchus-arine.
(Inspired by Lily's bilingual post and hoping to make you laugh. I hope you understand Yiddish. But if not - I will try to translate. I think what I said was "Oh-oh my friend. Woe is me and yuck yuck yuck. Tell that cancer to go kiss my tush").

Also - I know that a chronic sinusitis can affect your taste buds. I also know that a virus can make you loose your sense of taste but that it can also return - even after a whole year.

I am praying your way.
xoxo
Flori

[lexigirl]

Hi Irene,

Just wanting you to know that you are in my prayers for the new tx to do its job!! I am hopeful that you will do well.

Hugs and Prayers,
Lexi