back from doctors

Joy · 04-03-2008, 12:57 PM

Well, the PET confirmed that there is progression in the liver. She is referrring me to a radiologist for RFA, which I hope will be feasible. Size wise it is, she was just unclear about position. She is also going to call Dr. Geyer in Pittsburgh who pulled together the tykerb/xeloda trials and consult with him regarding what to do when patients progress on this combination. Do we keep the tykerb and add other chemos, do we dump the tykerb and look at completely different regimens? She felt like he would be a good resource. She also is thinking aobut avastin added to t/x or with herceptin and she is looking into the herceptin DM or whatever it is called. She feels that since I am tolerating tykerb and xeloda so well and it has maintained control everywhere else that we should try targeting this breakthrough tumor activity. And then see how it is going after that.

I am also going to see my specialist in Denver again as he is so positive and experienced. He always gives me a boost of confidence. She said we are no where near the crisis point we were a year ago and that this is not life threatening. I asked her how many more bullets I could dodge and she said, "Oh, 100!" She said that I'm stronger than I give myself credit for and there is no doubt that I can get through this. I'm still trying to believe that. Again liver function is good, brain MRI was clear, last mammo was clear, lungs and bone are stable.

Thoughts, comments, success story reminders...I'm open to all of it. Thank you guys so much for your concern and help and support and love and know I share all of that with you-every one of you!

P.S. I know a few people have posted on this, but I'm curious about anyone else. My hair is falling out a little bit on t/x and it really bums me out. Can that stop or does it just continue? Any hints on how to stop it?

kcherub · 04-03-2008, 01:49 PM

Joy...I am sorry that I don't have any "words of wisdom" for you, but I can send out positive thoughts and prayers for you! I will be reading to keep up with your treatments. I am so glad that you have such great doctors--they sound like keepers!

Take care,

lilyecuadorian · 04-03-2008, 02:29 PM

Joy ...I'm sorry to hear that ...progre,...but your are optimist like I'm ......and with a lot of hope and with a Doctor's like you have I think that you are in the right path ...my best wishes ...and what you have in mind about tretment is excatly what I want for me ,about radiation etc ......................let's wait what our sister opinions are ...and I love your doctor in Denver ....I strongly thinking that we (all the Her2 group ) will go togethers to the Dr's appoiment ....that is a great idea .......tha be a (BIG PLUS)

runtolive · 04-03-2008, 02:45 PM

joy.. its trastuzumab.. dm1... so far to date i think we have had about 6-7 girls on this board on this drug..barb and marcia.mpb. have been been on the longest 4-6 months.. a few others,, chrisy kyhome.. caryn.. all recently started...
lily was on it for about 4 - 5 months before progression restarted.. i know a few others on it... the docs running the weekly study love the drug.. apparently everyone on it at dana-farber and sloan-kett are doing very well..

runtolive · 04-03-2008, 02:45 PM

lily .. are u still on trastuz-dm1 or was that stopped..

run to live

Mary Anne in TX · 04-03-2008, 02:53 PM

Joy, it appears that you have great care. And I'd just bet that you can tackle 101 more battles! You are strong, wise, and positive. I'm sending up prayer flares for you! ma

lilyecuadorian · 04-03-2008, 02:55 PM

I did stop , I'm now on tykerb and Xeloda ...and I'm waiting for 2 more weeks ...depends how the results are ...I like to do this radiosurgery using the Novalis® Shaped Beam Surgery<SUP>TM</SUP> accelerator. but my Doc dosent aproved yet he said that is "no date yet" and they doing on Rochester and anothers states ,and the trial that he put me on DM1 "is not data yet" also ...and work for couples months with really no much side effects .....and that is the reason why I want to see another doct ...because I'm er+pr+ and I dont have any anti-estrogene blockers .....I'm nervous ...about the waiting time ... and so far he is not telling me what else is next .....thanks for asking

dhealey · 04-03-2008, 02:59 PM

Joy, I have no words of wisdom, just sending lots of prayers your way!

Mary Jo · 04-03-2008, 03:02 PM

Hi Joy,

Just wanting to bring you special love and encouragement today. Yes, you ARE a strong, tough cookie and I don't doubt for one minute that you will come through this trial with flying colors.

God Bless Joy with continued strength.................

Love to you....

Mary Jo

StephN · 04-03-2008, 03:18 PM

Dear Joy -
It seems to be mixed news, but NOT bad. Your doctor feels good about it. They see so many patients unable to hang in like most of us can, and know what they are talking about when they say we are strong!

I pray that the RFA will be doable and will get you closer to that dance with NED.

I think you need some healing energy that a visit from Tiptoe and Tex can provide! They are great fun and there is a sense of power that they bring with them.

chrisy · 04-03-2008, 04:05 PM

Wow Joy, you really have some great doctors! I love that she is really going to bat for you and looking into RFA, questioning the experts for "next steps" after T/X, and especially the strength she (and we) sees in you.

I particularly want you to pay attention to her comments regarding how "you are nowhere near the crisis point you were at a year ago" and that this progression is not life threatening. You are in fantastic health and apparently still quite agile as she feels you can dodge 100 more bullets. As Steph says, I think the good ones really can see what the patient brings to the equation, as well as what the medical community does. And you bring more stength, humor, and joy for life than almost anyone I know.

As for success stories, how about yourself for starters? How many times have you felt like you were at the brink and then stepped way back from the cliff and gone the other direction? I know you don't want to have to change your battle plan again, but I also know you WILL.

As for success stories with liver mets, don't forget Stephanie and Esther, and Irene has slapped down liver mets with RFA more than once.

Hang in there, dear Joy.

Chris

sassy · 04-03-2008, 04:24 PM

Joy,

I just want you to know that you ARE one of the success stories and will continue to be with your strength and fantastic team of docs! My prayers are with you.

Bill · 04-03-2008, 05:43 PM

Joy, you have so much positive energy pouring out of you, you can dodge this one, too. You're in my thoughts and prayers, Love, Bill

lisajones4 · 04-03-2008, 05:54 PM

I am sending prayers your way. You are going to win this battle to.

Lisa

fullofbeans · 04-03-2008, 06:07 PM

So sorry that you have to find yourself having to be brave again..

Also I wanted to say that for direct treatment to the liver I learned/was told that RFA or equivalent (i did laser) should be done on stable tumours only i.e. if they are growing they did not recomend it. So you may have to tame these first. I felt I needed to tell you about what I was told (i.e. this is why I had chemoembolisation first). However perhaps your liver mets are small and a large safety margin may be possible..so perhaps it is ok.

lots of loving and kind thoughts your way.

juanita · 04-03-2008, 06:19 PM

All I can do is send my prayers your way along with all of the others! I'll be watching for updates.

SusanV · 04-04-2008, 12:47 PM

Joy,

Just wanted to add, I see that your Dr. is doing a phone consult with a Dr. from Pittsburgh. If You ever need to come to Pittsburgh for any reason, You are welcome to stay at my house.....
Thinking positive thoughts, and sending them all your way

rinaina · 04-05-2008, 08:18 PM

Joy, if anyone can beat this it is you. You have everyone's support, prayers and positive thoughts. Just another log in the stream, fly in the ointment, nothing that you can't handle. Stay tough and positive.

eric · 04-06-2008, 04:18 AM

Joy,

Sorry you have to go through this now. Your doc sounds great and we all know that you are. My thoughts are with you as you prepare for this next phase in your fight with 100 bullets still in your gun.

Eric

Joy · 04-06-2008, 07:57 AM

YOU GUYS ARE THE BEST!!!! Thank you for all of your encouragement. I like to read and reread it when I'm down and doubtful and it helps so much. And Susan thank you for your beautiful offer of hospitality and I will keep that in mind definitely. Which reminds me that if anyone here ever needed a place to stay in Colorado for any reason I open my crazy home and would even reign in some of the crazy. We are not in the most beautiful part of colorado, but we have easy access to some lovely places around here. May is my favorite month in Ft. Collins. It is green after our 9 month brown season and flowers bloom so spectactularly here. It is usually warm and sunny. Just more to look forward to, right?

Thank you again!