count me in...and out

[Joy]

Hi everyone, I was waiting on results to post and just trying to live a relatively normal life. I am sorry for some of you and recurrences and struggles with all of this crazy stuff. And happy for those who are truckin' along okay.

I had bad news yesterday. It looks like herceptin dm1 is not working. I had may second CT since starting in June and it showed a fair amount of progression in the liver. The one prior showed stability. My tumor markers are reflective of the progression as well. I am so mad and scared. I can't believe it stopped working already. I wonder if it just was never the drug for me or if the cancer is just too aggressive and nothing will work well.

My specialist wants to see the CT with his own eyes to make sure, but we are pretty sure, really, that it is what it is. He said he would call by friday and he will be calling and talking to my local onc too. I don't know what the plan will be. I hope there is one.

I am wondering about Tykerb/Herceptin/Avastin or some combination thereof. Otherwise another trial? I don't know.

I am very sad and feel a little hopeless and mad as h-e-double bamboo shoots. I think the world of you all and would love a refresher on your successful options and opinions for treatment. With so much love, Joy

[hutchibk]

Joy - I am sorry to hear that the trial isn't getting you continued good results~

I too am awaiting results from my PET... and crossing my fingers.

If it shows any progression in the body, we plan to add Herceptin back in with my Tykerb/Xeloda...

I know so many folks have had great results with Navalbine and liver mets, have you and your doc talked about that in combo with something else?

Keep us posted!

[naturaleigh]

Joy,

I am so sorry to hear your news. A few post back there was a thread on Rexin-G. Ask your Onc about this new drug to see if there is a trial for it.

I know I am probably pulling at strings, but have your tried Chrisy's liver de-tox recipe? It really helped her get her liver counts down.

Keep on fighting to find the drug that works for you.

Joy and hutchibk, my thougts and prayers are with you.

[chrisy]

Dang, Joy.

I was getting ready to pm you as I thought it would be about time for more information. I was so hopeful that the DM1 would work for you, as of course were you. But as you know, everyone is different and when one therapy fails, the next one may very well succeed. That is of course especially the case with the "experimental" therapies.

I know you and your team will come up with a plan for the next step.

You had in the past been doing research into RFA and the Theraspheres. Are either of these still options you could pursue? Lily is being treated with the spheres. I don't know if she has much info on response yet.

I know you're feeling sad and maybe a little defeated. You've got every right to feel that way and if you want to cry or scream or throw things, go ahead and do it. I just wish I could hug you right now.

But although you may be weary, you are NOT yet defeated!

Much much love and many prayers are whirling through the universe...to you right now.

Love
Chris

[Soccermom2006]

S*it, s*it...Joy I am so sorry...argh...sending you strength and energy to formulate your plan of attack, Hang on girl..we love you and wont let anything take the JOY out of JOY!
Marcia

[Mary Jo]

Hi Joy,

I can't offer any advice on tx options but do want to say that I'm so sorry this trial isn't working for you. Damn!!! I wish I could help...OH HOW I WISH I COULD.......

Love to you Joy...

Mary Jo

[PinkGirl]

Hi JoyGirl
Sorry 'bout this. You can feel any way you want, for today and
maybe part of tomorrow. Then it's "onward and upward". I know
your team will have lots of options for you. Good luck with all of
this.

[Kim in DC]

Hi Joy,

Sorry to hear the news. Have you tried RFA or cyberknife?

[tricia keegan]

Joy I'm sorry I don't have any advice for you but am sorry to hear this and hope your onc has a new plan of attack that'll work for you.

[WomanofSteel]

Sorry to hear your bad news, but I am sure your doctors must be working on something new for you to try. I know you are down, but stay strong.

[Caroline UK]

Joy, I remember your name and your beautiful picture, from when I used to come to this fantastic site in the midst of my 2006-7 bc experience. I'm very sorry to hear about this. It must be exhausting for you to be on this rollercoaster of hopes raised and hopes dashed.

I have no opinions or help to offer, as it's out of my experience, other than to say that i'm thinking of you and sending a hug from across the ocean.

Love

Caroline

[Vi Schorpp]

I feel bad and mad for you also. I wish I could say something very profound, but words escape me. All I can say is that we're rooting for you and your new plan of attack. Be well.

[Bill]

Joy, I'm sorry to hear about your results. I was just thinking of you yesterday. Please know that my thoughts and prayers are with you. Keep looking for a treatment that will work for you. I wish I could help. Love, Bill

[ElaineM]

I was very sorry to read your news. Don't give up. Keep on truckin". Maybe you can do a little research or talk to some other docs and see if they have suggetions you could present to your oncologist. One doc doesn't know everything about everything. All docs have had different experiences with patients and may have special interests in different areas than your oncologist. You might want to write down the suggestions of other docs and ask your oncologist about them.

[caya]

Joy, I am sorry to hear of your progression, but tomorrow the sun will shine and your onc. and his team will have a plan for you.

all the best
caya

[sassy]

Joy,

So sorry to hear of your progression, but there MUST be another treatment just waiting for you to find it. I will keep you and your team in my thoughts and prayers, praying for a quick new answer.

[Joan M]

Joy,

I'm sorry that it seems your liver mets are progressing on the trial. I understand how you feel. Last year I had a wedge resection for a solitary pulmonary nodule and I had a "big" idea that I would get something like five years out of it but I got only one year. It was a local recurrence, and I had radiofrequency ablation in mid August. I'm due for my first follow-up scan next week.

I've been only on Herceptin since recurring but will probably be adding Xeloda even if the scan is clear.

Do you have only liver mets? Did you every think of doing RFA? It's done for primary and secondary liver cancer much more frequently than in the lung, and I think in some cases there are really good results for tumors under 3.5 cms.

If anything it could lighten the tumor load which would help make chemo more effective.

It's just a suggestion. I'll keep praying that you will find a good solution.

Joan

[BethC]

Joy, that SUCKS! Keep your chin up and keep fighting. We're here for you.

Love,
Beth

[kcherub]

Joy,

I don't have any advice for you, but I am so sorry that you are going through this! BC is just one unfair b*tch.

I will be thinking of you and checking your posts.

Take care,
Krista

[harrie]

Joy, Oh Crap!!
Wish I could offer you some advice, but I do want you to know I feel for you and I am with you all the way.
****hugs to you*****
We will all help you get through this together.
Lots of love.,
Maryanne

[Hopeful]

Joy,

You are in my thoughts. Best of luck to you with your treatment plan.

Hopeful

[lexigirl]

Dear Joy,

I am sorry to read of the progression to your liver. I am hopeful that you will find the right tx to get rid of the darned liver mets.

Hugs and Prayers,
Lexi

[jones7676]

Joy,

So sorry to hear your bad news...but there are so many new things out there - I hope they find something that works for you. Sending positive vibes your way. Hang in there.

[Jackie07]

Hi Joy,

I was just worried about liver mets - had dark, greasy stools lately and minor discomfort around the belly. Got a stool sample and blood test Wednesday. Will see my oncologist Monday.

Like many other members have stated, there are plenty of options out there. Please keep yourself in a positive mood because positive attitude increases endorphin which in turn improves our immune system which improves our fighting chances.

Thinking of you.

[Barbara H.]

Hi Joy,
Your news really upset me. Somehow I felt that this trial would work for you. It just shows that there are many varieties of HER2. I will be sending positive thoughts for you that your team will find the right drug/ treatment options. Keep us posted.
Best regards,
Barbara H.

[juanita]

sorry that you got bad news. i'll say an extra prayer for you tonight!

[Unregistered]

Joy, I don't blame you for feeling sad and disappointed and upset. I would feel the same way and most would too. Don't give up hope though, never give that up. There will be something else to hit this nasty disease with. Praying for you and hope they come up with something asap for you. In the meantime Joy, know you have everyone's love and support and we are here for you in good times and bad.

[rinaina]

that was a post by me and for some reason it came up as unregistered user. not sure why but trying to post to let you know who sent that reply.
Rina

[DanaRT]

Joy, This is upsetting. Praying for you and hoping your onc will have some news to boost you and another course of treatment that will be successful.
Take care,

[swimangel72]

Joy I'm sending you hugs and prayers..........you've been so upbeat and strong for us here - you have every right to feel angry and upset - I hope your onc will have a new tx plan for you soon!

[Patb]

Joy
I am sending you all the healing energy I can gather and
hope your Drs. come up with a treatment that is right
for you. There are so many out there. Best of luck and
my prayers are with you.
patb

[AlaskaAngel]

Joy,

It just ain't "right", Joy. You are again walking on the edge of uncharted territory. When it comes to the liver the first thought I have is of Full Of Beans and her success with chemoembolism.

How are you feeling physically?

AlaskaAngel

[janieR]

I also wish I could offer you advice and could help but all I can do is say I am thinking about you and wishing you well.

Take care and lots of love
Janie

[Darlene Denise]

Joy: I think a liver biopsy might be in order. Your Her2+ status may have changed. This has been the case with two of my friends who are long time metsters. It will give you fast results so you can formulate your best plan instead of just trying Tykerb/combos that might not even work.

Cyberknife can treat liver mets. There is one in Boulder Co, RockyMountain Cyberknife Center. WWW.Rockymountainck.com (http://www.Rockymountainck.com) 303-448-4620. Your onc may not know about this treatment, so be sure to check it out yourself if he doesn't offer to facilitate you to the Center.

There is the new chemo drug Iressa that might be an option.

I hope this helps somehow. I wish you and those that love you continued strength and wisdom to battle on. Please let us hear some positive news soon!!!!!!!!!!!

LOL Darlene in Virginia Beach

[Rich66]

Hi,
I hope your docs have tools at hand to help you immediately.
For other ideas to watch and bring up to forward thinking oncs, I reiterate treatments that have caught my attention:
Spheres(Thera or SIRS). You can have interventional radiologists interpret your scan and see if you are a candidate. SIRS is almost identical to Thera but is further along in BC treatment.

Rexin-G has been used/approved in Phillipine (Asian Hospital, Manilla) trials for met cancers for a couple years. They tell me limited use with bc but there is a bc trial in Santa Monica CA currently recruiting in a phase I/II trial. I have talked with teh research coordinator. They are well underway trying different dosage levels. My mom doesn't qualify..no previous chemo, abnmormal liver function tests exclude her. There is the Lazerex foundation that can help with $$.
http://her2support.org/vbulletin/showthread.php?t=34486&highlight=rexin
http://her2support.org/vbulletin/showthread.php?t=25961&highlight=rexin

There is a human trial in England finishing by end of year on Doxorubicin followed by Zolendronate. I have made some e-mail contact with the lead researcher:
http://her2support.org/vbulletin/showthread.php?t=35392

There is the LIFT trial gearing up for human phase 1 http://www1.wfubmc.edu/LIFT This could be huge based on mice tests but no human data yet.
Lily has looked into this trial.


There is the Vitamin D/macrophage issue as outlined here:
http://her2support.org/vbulletin/showthread.php?t=35531
Writer of article suggests in e-mail to me that an independent onc could get this going? Supposedly N. Yamamoto is talking with Harvard med. I have a friend in Philly looking into the "Socrates Institute.." but says address is in a lower income residential area. Maybe all the research is in Japan? I e-mailed Yamamoto. No bounce back but no reply.

Liver support/anti-met of Milk Thistle here:
http://her2support.org/vbulletin/showthread.php?t=35588 Some oncs won't combine wit htreatment but others will. MD Anderson listing doesn't suggest it's a problem combining but the wording is a bit vague or restrained.

Erbitux/celebrex/ant-inflamm thread here:
http://her2support.org/vbulletin/showthread.php?t=35463

And a stretch here but Biocancell from Israel seems like a promising overall approach.
http://her2support.org/vbulletin/showthread.php?t=35528

I apologise if these things don't feel helpful at this point. I compiled them in case your oncs have the ability and resources to delve further on your and everyone's behalf. If not for immediate use, to hold in reserve. I'm just a scared son with a computer trying to find every option. It would be great if everyone here shared this list with their oncs for feedback. I also have a crude Word document which is a bit more of a paper read if that helps anyone.

[vickie h]

Joy, I was saddened to read your post but I am hoping that you can start another chemo/trial soon if you haven't already. I have failed on Herceptin, Tykerb and several others. I am now on Abraxane/Avastin and am doing pretty good. I go see my onc next week and she is talking about a new trial. I'll let you know as soon as I find out. I have been on chemo since early 2004 and just when I think I've reached the end of the road, a new path appears. Don't give up, Joy, stay just above the anger (but feel free to get it all out anyway you can) and know that there is another treatment coming. I understand how you feel...after 2 months on Tykerb I failed and my mets got worse, really worse.. Sending you lots of prayers and more hope. I'll let you know what I find out as soon as I can. Love, Vickie

[CLTann]

Joy, from the first day I came to this sight, your name and face have been making a lasting impression on me. It is so unfair that this dreadful disease has impacted you so severly. As a stage 1 person, it is so difficult for me to express my desire to help, but I have no pertinent info to send you, except my sincere wish that a way will be found that can materially change your progression. Good luck and my humble and best wish.

[sally]

Joy, I am so sorry the trial is not going well for you. You are in my thoughts and you always bring "joy" when I read your posts. Please stay strong and hopeful. I know it's easier said than done. I am also fighting a large mass and will be scanned in a couple weeks. Hopefully you still have alot of options and combiniations to try. It seems like there are alot to try. Good luck and take care. Sally

[MJo]

I am adding my prayers and thoughts to everyone else's. Yup, take a few days to cry and scream and then on with the next round of fighting. There are more combos out there for you.

[sarah]

oh Joy, I wish I had advice. There's so many drugs out there, I hope they find a combo that works well for you. Wasn't Iressa a drug for lungs? possibly it's an old drug that's been replaced.
kick their asses to get you a drug that works!
Big hug and love
sarah

[dixie46]

I am posting what one of my relatives wrote on another forum. She goes to md anderson for her treatment and they put her on Fareston an older drug and things are looking better for her. Might have your onc call md about their opinion of this drug. Now she was er/pr postive and not her2 positive so don't know if that was why they chose this.

Her message:

CA 27-29 was in normal range 33.8, still alittle high for me.

The Cat Scans showed nodularity on lung major fissure difficult to
visualize, the lesions that were pushing into my liver are considerably
decreased in size, everything has decreased considerably.

I am happy.. thank you doctors, thanks to the Fareston, thanks to the
nasty Colloidal Silver and thanks to "John of God".

[micheleu]

Joy, i will pray that something will be releaved for you to try. Hang in there, i know you try to stay so strong for us, but inside your hurting.

[Joy]

you marvelous! Thank you so much for your thoughts and compassion! Thank you to everyone!

[Barbara2]

Don't give up, Joy! Many are praying for you and for a treatment that will work for you. Good luck and hang in there...