Progression & Toxic on Taxol, dont know whats next
 

Guess #60 was my magic number because when I went for my onc. visit yesterday, I learned that I am progressing on the Taxol, and showing signs of Toxicity...the shortness of breath after each treatment has gotten progressively worse, and my feet are making walking a chore from the neuropathy...then, the fact that my neck nodes have doubled in the past month...not good. So received my Herceptin, and am scheduled for all scans yet again before a new treatment plan is decided. Oh, and a visit to the throat Dr, due to continued hoarseness left over from when I had pneumonia...I went from having the sultry voice of a phone sex operator to the voice fo a person sucking on helium balloons!

I do feel let down, feel like I have lost my hair 3 times for nothing in the past 2 years, but then i think hey, I did get almost 2 years out of this drug! The Dr is hoping I can get into the T DM-1 phase III trial that will be starting, but I read previous Xeloda use will probably get me the boot!. I just keep telling myself when one door shuts, or slams in my face, another will open...

Guess I am overly emotional at this latest news, still coping with my Mom having a major stroke last week which has limited her speech and movement....I keep asking..Just How big of shoulders does the guy upstairs think we have anyway????

Tomorrow is a new day, and I have to refrain from thinking that things are growing while I wait for the after effects of the last chemo to leave my body so I can gain some strength, and a new plan can begin. Keep me in your prayers...I need your strength right now.

Sorry to hear this. On the positive side, the long run on Taxol seems to leave a number of options to try. Some which might be better tolerated, too.
Has adding Tykerb to the Herceptin come up? Navelbine? Gemzar?
Can a biopsy be had for any of the mets? Maybe they are ER+.

Sheila,
I too am downhearted to read your post. You have been fighting the battle long and hard. I guess the big guy knows you do have the largest shoulders. But after all enough is enough....I am sorry to hear about your Mom. :(

I am keeping you in my very special prayers and will continue to do so...I am hoping the trial will open up for you as we are hearing so many positive results with the sisters who are in the trial.

I wish I could do more for you Sheila....you have always been such a model for me. I feel frustrated, please know I am reaching out to you and sending you a huge strong healing hug filled with loving energy.

Love your new photo with your beautiful family!
Best Personal Regards,
jean

Hi Sheila so sorry to hear you are having such a bad time. I am due to start a taxane with herceptin for a contra-lateral axillary lymph node recurrence.Please don't loose hope you have stayed on top of this thing for years and will beat it! I will pray that your new treatment is effective and cause you less side effects than the taxol.Hugs from across the pond. Ellie

Rats!
 

Just rats! That makes me so mad. And yet I'm surely glad that Taxol gave you 2 years of work. You know, Sheila, I did herceptin and navelbine after taxol and herceptin and carboplatin and it was with the time that I was doing navelbine and herceptin that my tumor markers began to go down more. I still believe that it took every single dose of all that "poison" to get me to this point. You know I don't know anything about anything, but I do believe it was all those combinations together that has me here.
I'm sending loads of love and good thoughts to you. I think your shoulders are mighty huge, but I wish they could get a BIG REST!
Lots of love, ma

Hi Shiela,
I really hope you can get on the T-DM trial. You will find it so much easier than Taxol. The first dose is a little difficult. After that, I have not found it much more difficult than taking Herceptin alone. I've been on it since Sept. 07.
Best wishes,
Barbara H.

Sheila,
I am sorry to read your post. First of all I'm sorry to hear of your mother's stroke. I hope she will regain strength and function.
You got 2 yrs out of taxol. That was good. But it sounds like with the neuropathy etc it was getting harder to tolerate too. It's a scary time when one med stops working and we have to change to a new treatment. Will it work? How will I feel on it, etc. How long will it work? Taxol only worked 8 months for me. I was on taxol & avastin. I dont know which drug caused what se exactly, but now that I'm on gemzar & herceptin (since Feb) I feel much better. You've got lots of yet unused chemo options - that's always a good thing. I'll be waiting to hear about your scans & next treatment decision. I didn't know dm1 was starting a phase III trial - that's exciting. I've been hoping to get on that too eventually, but if xeloda is a deal breaker that counts me out too - for now. You are always such a support & inspiration to me. Know that I am thinking about you as you wait now for decision on the next treatment plan.

I'm not "Jordan" I'm Pam_P. I had trouble logging in & I don't know how this got mixed up. Jordan was a user name I tried briefly a long time ago. I may have to ask Joe to help me get Pam back as my user name.

Dear Sheila,
You are always in my prayers. You are so dear to me.

Hugs,
Gemma

oh, it's Pam P... ( not Jordan, or Pam_P) I finally figured out my mistake in signing in. That's what I get for being absent for awhile.

Shelia,

I am sorry that you have had progression.That is never nice to hear but I believe that your onc will find just the right treatment for you. Does Xeloda exclude you from the trial? I thought others on the trial had been on Xeloda. It is worth checking into.

Tonya

Sheila, sorry to hear about your progression and that you have now become the toxic avenger. You indeed should be thankful taxol gave you 2 years, it didn't treat me that kindly. Hang in there honey. I know it's been a long hard road, but we both know there are easy times between. Sorry to hear about your mom, I know first hand that parent issues can wear on you more than the treatment itself. You will be fine dear and we are all here with prayer, love and support.

Oh Sheila, I'm so upset that you are still burdened with the nasty nodes. What a stubborn spot. Your onc has really been able to stay with something and get a long lasting effect with it.

I am sure she will come up with something new that will knock those mets back. Since you haven't been heavily pretreated, you have a lot of opinions left. I just wish everything would just go away and not come back.

Love, Becky

Sheila,

You are in my thoughts & prayers. I am hoping that you end up on a better treatment with less toxicity.

Sheila,

You look great in that picture with the kiddos. 'Courage is when you have someone or something that you love that...' - and you have so many loving friends and families.

Like the others have said, your doctors are going to figure out the next steps. I am sending positive thoughts from Texas...

Hi Sheila....

Sending love and prayers. I'm so sorry you had to hear this news. Know I care....

Mary Jo

Sheila,

Take and deep breath--we're all taking one with you--and getready for the next round that will once again put you into remission. Two years at a time works---it gives you two more years with those lovely children who I know love grandma to distraction.

I am keeping you in my thoughts and prayers.

Dear Sheila,

Thinking of you and praying for your doc to find the tx to knock down those darned nodes.

I am sorry that your mom isn't doing too well. I hope that she will recover her speech and mobility.

Rest and lean on us. You need your physical strength and your emotional strength now so you can fight this ca off. His shoulders are big enough to handle this. We are here too.

You are an inspiration to me Sheila and I know that we will have you here for many years ahead.

Hugs,
Lexi

Dearest Sheila,
I am so sorry to hear about your Mom and the progression. Rats! The good news is that you have so many more options to choose from. Navelbine has been a life saver for so many (and you ger to keep your hair or most of it). The DM1 trials would be great if you can qualify. I, too, was on Xeloda and had progression...so that is out for me.
Give your mom a hug for me and remember we all love you very much. You are such an inspiration to all who come here.
Sending you lots of love and hugs tonight,
Vickie

Progression & Toxic on Taxol, dont know whats next
 

I am so sorry to hear your news. You have a right to be down.
If you are estrogen positive you may want to ask your doc about an aromatase inhibitor like Femara with the Herceptin or add Tykerb to Herceptin and Femara.
How about a trial? There must be something you are eligible for.
I hope your Mother feels better soon too.
Hang in there and keep putting one foot in front of the other.

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?

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.

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.

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.

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

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

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

praying hard
 

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

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

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!

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

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

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.

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

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

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.

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.

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

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