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.