Progression & Toxic on Taxol, dont know whats next

[hutchibk]

Maybe ask your doc about Tykerb/Xeloda - even though you've already had Xeloda, it would be worth trying in combo w/ Tykerb. Or, adding Tykerb to your Herception?

[rinaina]

Sheila, so sorry to hear your update and bummed to hear that your treatment has stopped working. Two years is better then nothing but it is so frustrating that you are now faced with trying something new again. You are entitled to get disgusted but don't get too down because you need that positive attitude to help you too. I am confident that your onc will find a winning combo treatment to knock the socks off those stubborn nodes. Maybe you will qualify for the trial but if not, there are other drugs that will work. You hang in there girlfriend. Sorry also to hear about your mom, as if you don't have enough on your plate. I know how much added stress caring for a parent can be. My mother in law, who has always been like a second mom to me, has alzheimers and it has been just awful to see the progression and decline in her well being. She is totally dependent and can't walk anymore. We have had to put her into a home because she just progressed so much. Dealing with the guilt of that on a daily basis. Please keep us updated and my prayers, love and positive thoughts are with you always.

[SoCalGal]

Hello my her2sisterSheila,
Jeez...I am not happy to read your news. And I appreciate your words to me. You really hit the nail on the head. I wonder if adding tykerb has ever been considered. And like Brenda said, what about adding back in xeloda? Another thought is radiation for the nodes. Have they ruled that out? This disease is the pits. Here you are in this moment in time, so stressed and distressed. Fast forward to a future (but not very far) moment and you get on TDM1 with a great response in the first four weeks. In theory, 8 weeks from now you could be in remission. It's just crazy the ups and downs. And yes, the symptoms and side effects we endure. I am up because I have a pounding headache and a dry annoying cough. Is it my brain? (no - hormones more likely) The cough - Is it lung mets active or our dry windy weather (yes). It's just so hard to stay steady. And it is absolutely screwed to loose your hair, especially again and again. I know you are a smart and strong woman. I see those BEAUTIFUL and loving faces of the grandkids. Drink them up whenever possible. Draw strength and love and laughter from them. Let them distract you. Babysit everyday! Finger paint, bake, make messes, feed them cookies and ice cream (don't tell the parents) and keep a camera right there to document it all. My parents are gone but their five beautiful grandchildren (now age 16 - 21) cherish their memories with my mom and dad and when mine went to college, the only family photo they took was the one with Gramma and Poppy! You are blessed by them and I can see the love between you all in the photo. Sending you a jumbo hug.

[tricia keegan]

Sheila,

I'm sorry to read your news, just wanted to send hugs and please know you'll be in my thoughts. I hope your onc will come up with the magic bullet for you and hopefully it'll give you an easier time than the taxol.

[Mary Anne in TX]

Good Morning, Sheila! Your grandkids are the luckiest ever! What a wonderful picture! Love all over the place....coming from the big love giver....
So wishing for a good day for you. Much love, ma

[lisajones4]

I am so sorry to hear about your news. You are in my thoughts and prayers!

[Believe51]

Oh My Sweet Sheila, I am so sorry to hear of this progression. When I follow the journeys of the people I have grown to love, I take it like a personal blow. My heart pains me to hear the sadness and worry in your voice. There are moments here that I want to jump on a plane just to hug someone who needs one. This time is no different for me.

If God does give us what we can handle then I am sure that his faith in your is endless. You are at another crossroad, Sheila and it is with your winning spirit that you will look all ways and then trudge forward once more. Remember that we are all here petitioning for time. As said before, we need science to catch up with our disease while we are gaining that time. Science right now is on fast forward!

So My Dear, I understand the sadness and worry. I understand that your plate is full and you have had your share of this all. You have had a rough year trying to get better and the news of this takes whatever peace of mind you have and tests it again. I know you are off to the drawing board once more, writing your stategy and gathering ammo. During this time I pray for your peace of mind.

I have witnessed great feats of accomplishment from you since we met. I pray too that your spirit stays strong as you embark on the next annihilation process. In the mean time please know we will be right here routing you on, keeping you strong.

I am also sorry about Mom and her health issues. Hopefully those strong shoulders of yours will get a break soon. Keep in mind that relief is on the way. Whatever course of action you will take will be the best decision you can make with the information at hand. Whatever plan of attack you conclude to will give you the time you seek. If it does not, the gameplan will change to that magic mix for you. Personally, I wold love to see you on the trial.

Either way Miss Sheila Girl, I am here following your journey as close as a surgeon examines a brain. I love you with all my heart. You just do your best and leave the rest up to us. Now I do believe you have some planning to do...(smiling). Go get 'em Sheila, remind cancer how much you will not welcome it!!>>Believe51

[mmoons]

Sheila-

Having your mom not well and your own health worries is just so much. I am so sorry. I wish I could lighten your load, along with everyone here. I pray you get into the trial or that one of the other drug combinations proves to quickly be the right one with less toxicity for you.

Oh Sheila, what a beautiful bunch of children in your photo...all loving on you. What lucky children...!

Love,
Maureen

[Shobha]

Praying for you, dear Sheila. So sorry that you have to deal with so much all at once. God has to find a way to start healing you now and find the right combination of drugs to help you fight this battle!

Prayers and lots of positive thoughts coming your way!

hugs,
shobha

[flynny]

Hi Sheila,

You are in my thoughts and prayers daily. I think you are one amazing woman and I am so proud of you for all of the times you are so upbeat. No one knows what our future will bring, however there are so many options and trials for us all to try - we just can't give up.

What you have done "isn't for nothing", you have shown that this drug can work, but now its time to try something different.

Here's a big cyber hug from me to you!

[Julie2]

Hi Shiela,

Will your onc. consider any local treatment for the nodes? Also how about trying Tykerb with Herceptin or the T-DM1 trial or HSP trial? I keep thinking about you and is there a way to deal it locally since you have just those nodes since so many years. Whatever you decide wishing you a wonderful outcome and NED.

Julie

[michka]

My dear Sheila, I feel very upset knowing that your treatment is not working well enough anymore. I know how much you went through and how courageous you are. You are very special to our group and to me. I can imagine even more to your family and to those beautiful grandchildren around you. You did not do all that for nothing! You are here with them and with us. I am sure you will quickly find the best new combination with your onc and then fight back.I am thinking of you and sending you hugs. Michka

[StephN]

Dear Sheila -
Getting a bit behind on the board here, what with getting ready to go to Denver to the cancer researchers' meeting.

So very bummed and torn to learn that you did not have such good news. Taxol was a good drug for me and I think it did fight your cancer well for a long time. Believe me - Sheila, you are the OPPOSITE of toxic!!!

As for what is next. Do you think that the T-DM1 is far enough along in trials that it could be given "off label" if you don't qualify for a trial?? Maybe time someone pushed this question.

Then there is the new drug that got rave reviews in San Antonio - Neratinib.

Also Sutent in various combinations.

Just keep in mind that the treatment you have been on is still working in your body to some extent due to their half life.

I am sure it has been a hard row to hoe (not with a PINK one!) getting over the pneumonia while somewhat weakened from the chemo. This break should do you some good as far as your stamina goes. Get some fresh air and practice some deep breathing exercises.

I hope and pray that your mother is doing better by now and will continue to regain some of the lost movement.

[Patb]

Please know that I care and will be praying for a
break for you, something that will knock this thing
for good. You have fought the good fight and I know
you will continue. I will also add your mother to my
prayer list. Take care.
patb

[Carolyns]

Dear Sheila,

I am sorry to hear this news. I agree with Brenda about the Tykerb w/ Herceptin - I got 3 months out of that and it was easy. Someone else mentioned the Heat Shock Protein trial and that sounds promising too if you can't get TDM1 off label / compassionate use.

You remain in my prayers. You will find the next "good" medicine and knock this disease back down.

Love, Hope, Peace,
Carolyn

[Barbara2]

Keeping you in my prayers, Sheila. I'm just sure they will find something that will knock back the cancer. Praying for your mom and family, too.

[Gerri]

Shelia,

So sorry to hear about your progression and your mother's stroke. The amazing thing about you is that even with all you have going on you still manage to push forward.

Hang in there Shelia. I'm sending all the strength I can muster your way and praying that you get the break you need and a treatment plan that works.

[chrisy]

Sheila, you know that you are always in my prayers but especially so this past week. I pray for you to be filled with strength and energy as doctors and researchers are guided to make wise choices...

Wrapping you in love right now...
chris

[Believe51]

Thoughts of you flooded into my mind as I cleaned the house. Although I tried to have some will power, I could not resist stopping in and telling you that I am thinking of you today. You are always in my prayers, Sheila and today is no different. Sending you healing prayers now more than ever....(if that is even possible My Warrior!)>>Believe51

[Brenda_D]

Sheila, I'm so sorry to hear this. You were a big help to me when I first came here, and I want to thank you for that. I hope that your onc can find a new combo or drug that can get you back to ned. My thoughts and prayers are with you. Hugs, Brenda