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Joy 03-03-2009 11:13 AM

In 25 minutes
 
I go see the onc about my latest CT from a week ago. I have had 4 rounds of Epirubicin/Cytoxan/Herceptin for the stupid liver business. My stomach is doing flip-flops. I just hate these visits and at the moment I am thinking of hopping in my car and driving DIA and getting on a plane to Mexico instead of going to the appointment.

My fears are, obviously, that this isn't working or not working fast enough which would make yet another treatment protocol I've blown through in a fairly short time. And what the heck would we do next. Short of trials, which I am very willing to do, I feel as though I am close to the end of the list for treatments. I have become obsessive with worry and any little symptom-y thing and I have been forgetting how to just live my life. I am paralyzed by it and can't see a future/the future or plan for it. I so want to as I have so much going on that is great.

Soooooo, I guess, I am asking for some extra positive energy in the next hour or so from all of you. I'll try to absorb it and grow it and send it back to everyone.

Lori R 03-03-2009 11:18 AM

Joy,
Just logged in and saw your post. I am not far away so the "vibe" should be very strong. Sending you LOTS of good thoughts, warm hugs from the Denver Tech Center!!!

I'll be praying that this is the treatment that sends those liver buggers packing!!!

Lori

Sherryg683 03-03-2009 11:21 AM

Thinking of you right now and praying for good news. I have that run away place in the back of my mind also...I tell my husband that if I go missing..it's because I've bought a one way ticket to Tahiti and have said "to hell with it". sherryg683

Shobha 03-03-2009 11:25 AM

Praying for you and sending lots of positive vibes. May god bless you with good results for your CT scan and fill with hope and joy!

Praying hard!

love,
shobha

vickie h 03-03-2009 11:49 AM

Joy and Sherry,
Hmmm....Maybe that boarding a plane for exotic places isn't such a bad idea...wait for me! I'm packed and ready to go most days of late.
Joy, Hang in there, sweet girl, there are more trials coming sooon. I am waiting for RAD001 and am thinking about going to MD Anderson in the next few weeks. I, Too, have reached the end of the "protocol" train. Though, I will keep wishing for a miracle for us all, and a fear-free existence for the time we are here. My heart and love reach out to you in this hour of need. Let those tears fall freely and open your heart to the universe. There is help on the way...we're not ready to check out any time soon, Joy...and before we do, I say we get on a plane with all the others in our place and fly to the sun and sand and sea. I love you very much (I'm holding your hand as we speak), Vickie

Carolyns 03-03-2009 01:04 PM

Hi Joy,

Sending extra good vibes that this is working. Please keep us posted.

Carolyn

Soccermom 03-03-2009 01:17 PM

Thinking of you ,Joy..and am concerned...
please let us hear from you!
Marcia

Mary Anne in TX 03-03-2009 01:40 PM

Sending up prayers and the very best wishes for you Joy. ma

chrisy 03-03-2009 01:58 PM

Joy,
Hugs and prayers and love for you, no matter what information you get at your appointment. You are a shining light and I love you.

Chris

PS - I just read on another post; you were sending Colorado sunshine to Eric and Caryn just before posting this...so you really ARE a shining light!

lkc Gumby 03-03-2009 02:02 PM

Joy,
I am an infrequent visitor to these boards, but when I do come on, I am always amazed by your spirit.
I am thinking of you and praying that you get good results.
God Bless.

ElaineM 03-03-2009 02:40 PM

In 25 minutes
 
Good thoughts are coming your way from Hawaii.
Hang in there and keep putting one foot in front of the other. Please don't run away to Mexico yet. Stay here with us !!

Joy 03-03-2009 03:43 PM

well color me surprised
 
Thank you so much for all the vibes-i think they helped. The E/C/H combo has caused regression of liver activity by 30-40%. I am pleased, as is the doc. So since I had 4 Epirubicins recently and 4 Adrias in 2000 she thought instead of waiting until progression on E/C/H and run the anthracycline option out due to lifetime maximum we would start Tykerb again, but with herceptin. And I believe that is the 4 pills, rather than 5-right gals? And I have to refresh my memory-is that empty or full stomach? And I have to remember if I prefered night or day last time. I know there are threads I can look up. I did not have much of an issue with diarrhea when I was on the tykerb/xeloda mix, but we will see with this. So that is the current plan. As you know there is some good data on the combination. What we are a little unsure of is the fact that I have progressed on both in other combinations, but she said that shouldn't exclude the potential for this combo to work. If any of you have had this experience, I would love to know. As in, had you had H then progression and T and then prgression, but then combined them.

My oncs office has started doing phase I trials in addition to later phase trials and the first one they are offering is for CX-4945. I think it is a targeted therapy for solid tumors. They have 2 people on it so far in the dose escalation phase, both older men, one with prostate and one with lung. So far so good for tolerating. This is a cohort study so other facilities are/will be participating. May be something to look into for someone and we are keeeping it in ouir back pocket for now.

So, again, thank you to everyone for your support and thoughts and more coming your way from me.

chrisy 03-03-2009 04:00 PM

Dang, girl! That is impressive results my dear. I really like your oncologist - got you out of the woods with the aggressive chemo, but really wants to put you back into a more targeted regime. Just when you were getting used to having no hair - go figure!

Good work, Joy - and I deliberately give you credit.

Now to refresh your memory....it's EMPTY stomach on the Tykerb and it doesn't matter if it's am or pm - it sort of depends on how your body reacts to it.

Flori is I think the expert in tykerb+herceptin. I don't think she progressed on Tykerb previously but I'm sure she will chime in.

There was a presentation at San Antonio in the general session where Jenny Chang looked at the different mechanisms of action in Herceptin and Tykerb. It clearly showed they acted on different pathways. So it made sense why one might work while another didn't, and to me it also explained why there might be synergy between the two, moving towards the closing all doors approach. If resistance develops on one path, ambush it on the other path. I know your oncologist will watch you closely on this.

Thanks for the great news!

Gerri 03-03-2009 04:09 PM

Great news Joy!! I am looking forward to even better news once you are on the Herceptin/Tykerb combo. You are such an inspiration to so many. Thanks for sharing your heart so freely with all of us.

Much love,

jones7676 03-03-2009 04:45 PM

Joy, I am glad you got some better news and most of all that your doctor is working that hard for you.

I think of you all the time and wonder how you are doing, so I am glad that you posted.

I hope you will continue to come here for positive thoughts and feedback because we love to help you when we can.

Becky 03-03-2009 04:51 PM

Hola

I guess its no Mexico for you yet! Plus, when you go, you have to drive (with me and other friends). Only provisions are a case of Coke Cola (the real thing), a carton of cigarettes (your choice) and probably some rum since we'll get all the Kahlua and Tequila we want once we get down south (which won't be anytime soon since you're doing well).

Keep smiling Joy. Your smile is great for all of us.

WomanofSteel 03-03-2009 08:51 PM

Glad to hear about your good results. Hope things continue to work out with the new treatment.

karen z 03-03-2009 09:02 PM

Wonderful news Joy!!
I am so glad.
karen

Jackie07 03-03-2009 09:40 PM

That is wonderful!

Didn't get to read your thread until after your 'crisis' had passed. So glad everything turned out so well. Love your smile.

caya 03-03-2009 09:46 PM

Great news Joy... so happy for you.

all the best
caya

harrie 03-03-2009 11:19 PM

Joy, I just found this thread! SO....that means my prayers for you will be prayers of thanks and gratitude!! Way to go Joy!!

Rich66 03-04-2009 01:07 AM

Joyous news indeed. Have they a way to check for circulating estrogen? Just wondering about putting the brakes on another potential food source. Any chance of spheres, LC beads or an isolated hepatic perfusion approach (closed loop chemo)?

MJo 03-04-2009 07:05 AM

Yippee, Joy. When you and Becky start driving south for that trip to Mexico, you will find me hitchhiking by the side of the road. Last week I looked into running away to Spain. Mexico will do.

Hopeful 03-04-2009 07:59 AM

Joy,

So happy to hear your good news. Best of luck to you with your new tx.

Hopeful

Joy 03-04-2009 08:42 AM

Thank you All and Becky, Mary Jo...
 
brush up on your Spanish cause I like the way you are thinking!!!

Colleens_Husband 03-04-2009 09:00 AM

Joy:

I am so sorry to hear that cancer has taken such a toll on your spirit. It is perfectly alright to have down moments and down days. I am confident that you will be back and ready to kick some cancer butt in due time.

There is a thread in the 'Keeping your mind off BC' forum that Bill started called "The Campfire" that I believe has some relevance to the way you are feeling. Please feel free to join us there.

Please know that you are not alone. We are here for you. Remember that you are in our hearts and in our prayers.

Lee

lkc Gumby 03-04-2009 09:25 AM

Great news, So happy to hear.

Shobha 03-04-2009 09:44 AM

Great news Joy! May God continue to bless you with good results and help beat this!

love,
shobha

mts 03-04-2009 10:09 AM

Superb results... Way to GO !

By the way, If you do go to Mejico- I will be your translator !

Maria

SoCalGal 03-04-2009 04:02 PM

!Hola Joy! DING DING DING i'm chimmin' in
 
Fresh off the PET/ct table myself.

I started on Tykerb-Xeloda at stage 4 dx - April 2007. Stayed on Tykerb thru all changes, additions, etc but NEVER w/Herceptin until switching Onc's in Dec 2007 (just over one year ago.). I did a wash-out (gotta love that crapola term) in Nov 2007 while I got my ducks in a row.

So basically I've been on Tykerb since 4/07 and added in Herceptin December 2007. Improvement. Then added Avastin in March 2008. More improvement. (tykerb/herceptin every 3 weeks - no pre or post meds). Then Zometa (every 6 weeks). Lungs were clear at the last scan. Markers are stable, much lower and near "normal". And sternum was stable on CT w/some discussion on PET results. I'll know more tomorrow after my results are in from my scan today.

Joy- when I saw Dr Glasby at UCLA last Dec 2008 he explained to me that there IS synergy between Ty and Herceptin. He used a roadblock analogy, saying if you put one road block in the road and cars are going around it, don't remove that block, just strengthen it - add to it. He said "they" (whoever they are) feel that there is definately synergy.

My current Onc agreed with him and that's why I switched up my regime.

Way back when the Tykerb Tigers & Diarhia Diva's started, we all used to take our Tykerb first thing in the AM. I still take mine first thing with my coffee. The only other advice is to start out gradually with Tykerb - (3)pills for 3-4 days then (4)pills for 3-4 days and then go to full dose - (5) pills a day on EMPTY. I think that really makes a difference in keeping side effects to a low roar. Brenda can also chime in - she's on Tykerb-Herceptin, too, but I'm pretty sure she takes (4) tykerb a day.

Hope all this info helps. Stay present Joy. It's the only way to deal with this stuff.
xo Flori

julierene 03-09-2009 06:14 AM

I feel you honey. I just went through my own progression scares. But finally, an old treatment was tried and started working. I felt the same way about burning through all these great medicines (Navelbine and Gemzar!!!), and they weren't working! I felt like I was about 80 years old with the mets in my back. Anyway, this old treatment was changed up just a little bit with the Abraxane instead of Taxol and it's working! Next, he has Avastin approved, and some other drug I forgot the name of that I haven't ever had any class of... He is trying to prepare me for the idea that Herceptin and Tykerb are ineffective. But I have a little ways to go yet.

hermiracles 03-09-2009 06:26 AM

Bet that bought a big smile to your sweet smiling face Joy. Hope you keep getting more reasons to smile Sis.Blessings
Hermiracles

Joan M 03-10-2009 05:12 AM

Joy,

Great news on your scan results.

Joan

julierene 03-10-2009 06:03 AM

It's time for an updated signature JOY! :) Wooo Hooo!

harrie 03-11-2009 12:14 AM

Joy, I just wanted to tell you that the other day, I thought of you at the end of my yoga practice and I dedicated my practice and positive energy to you.


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