Finally My Turn
After my failed surgery in January (open/close liver non-resection) I started a new chemo cocktail and liver radiation. The surgeon had found more/larger tumors on the liver than the pre-surgery had indicated and he also found 3 positive celiac lymph nodes. 3 weeks after completing the rads I had a CT scan. Again, the lymph nodes didn't show up. They have never shown on any CT I've had. The tumors we had radiated (all 6 of them) were already showing signs of necrosis. VERY good news. More chemo - wait and see with rads. I asked for a PET scan to try and locate any nodes we can work on while waiting for more liver regeneration.
My team took my case back to the tumor board for node treatment approval. The tumor board was so pleased with my progress that I was approved "enthusiastically and unanimously". A tumor board that is enthusiastic? Cool. So I had a PET scan last week. The scan was Wednesday and The Liver Symposium started Thursday evening. Off to Chicago, scanxiety and all.
I have a special arrangement with all of my docs to get test results immediately - I don't wait for appts. I email my doc as a reminder and they fax the results to me as soon as they become available. So I emailed Dr Ted and my results were faxed on Friday. Great, I'm in Chicago. I went to my room between sessions and dinner (we got a 2 hour break) and checked my email on my phone. Dr Ted had responded more completely than usual, but here is the message in its entirety:
"Will do.
You have had a complete response; no evidence of active disease.
I am so pleased
Ted "
No Evidence of Active Disease - Magical words. Words I never thought I'd hear. It is real. His PA, Leah, called this morning to cancel my appt with him for tomorrow. He only sees sick people and I don't qualify anymore.
How long will it last? Who knows? I'll take 3 months, 3 years, 30 years....whatever I can. I will see my medical oncologist tomorrow for my chemo treatment plan. I imagine it won't be much different than what I'm on. Maintenance chemo? (chemo lite) Probably. I can live with that for a very long time!This is not No Evidence of Disease. This is not a 'cure'. But it is wonderful in its own right. I am content with this small miracle for now. Yes, I still want more. I will get there. Baby steps. More waiting. More scanxiety. I'm still Living with canzer. Notice the word capitalized in that sentence. I'm now LIVING large! LOL
Time to remind my docs of their job so they don't slack off now. They need to get me 5 years. In that time, I believe technology will get me 5 more, and 10 will get you 20 every time! Rock on!
Kimby
Comments
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YAYAYAYAYAYA!
Kimby, that is FABULOUS news!!! Better than FABULOUS!! There isn't a word that describes just how wonderful this is!!!
Now, just so that I understand your post correctly... .does this mean that you have tumours or nodules or "suspicious" areas that, at one point, were metabolically active but now are not showing any sign of metabolic activity? IE: None of them lit up on a PET scan, even though you and your doctors know they are there?
We have all sorts of spots, cysts, scars, etc. in our bodies at any given time and as long as they are not metabolically active, meaning the cancer cells are not active... then heck, I'm with you on that one! I could live with that too
I am sooooo thrilled for you!!! I hope you are planning on one heck of a celebration!!
Hugggggggs,
Cheryl0 -
CherylCherylHutch said:YAYAYAYAYAYA!
Kimby, that is FABULOUS news!!! Better than FABULOUS!! There isn't a word that describes just how wonderful this is!!!
Now, just so that I understand your post correctly... .does this mean that you have tumours or nodules or "suspicious" areas that, at one point, were metabolically active but now are not showing any sign of metabolic activity? IE: None of them lit up on a PET scan, even though you and your doctors know they are there?
We have all sorts of spots, cysts, scars, etc. in our bodies at any given time and as long as they are not metabolically active, meaning the cancer cells are not active... then heck, I'm with you on that one! I could live with that too
I am sooooo thrilled for you!!! I hope you are planning on one heck of a celebration!!
Hugggggggs,
Cheryl
Yep, I still have liver tumors in my left lobe that have not been radiated yet. We were going to work on those celiac lymph nodes next. Since we know 3 were positive we needed a PET to find the rest. Then we were going to work on that left lobe of the liver.
I'll see my rad onc in a couple of months to check on those tumors in the right lobe that we just radiated and I won't see him again until there is active disease. I love him but I don't think I'll miss him much.
I decided to have a Memorial Day BBQ to celebrate. I'm still so fatigued from the rads that I don't know how I'll pull it off - good thing I have lots of family and friends that can do all the work.
WooHoo!
Kimby0 -
awesome newskimby said:Cheryl
Yep, I still have liver tumors in my left lobe that have not been radiated yet. We were going to work on those celiac lymph nodes next. Since we know 3 were positive we needed a PET to find the rest. Then we were going to work on that left lobe of the liver.
I'll see my rad onc in a couple of months to check on those tumors in the right lobe that we just radiated and I won't see him again until there is active disease. I love him but I don't think I'll miss him much.
I decided to have a Memorial Day BBQ to celebrate. I'm still so fatigued from the rads that I don't know how I'll pull it off - good thing I have lots of family and friends that can do all the work.
WooHoo!
Kimby
that news kicks ****. Enjoy the rest of your spring and summer0 -
Hooray!CherylHutch said:YAYAYAYAYAYA!
Kimby, that is FABULOUS news!!! Better than FABULOUS!! There isn't a word that describes just how wonderful this is!!!
Now, just so that I understand your post correctly... .does this mean that you have tumours or nodules or "suspicious" areas that, at one point, were metabolically active but now are not showing any sign of metabolic activity? IE: None of them lit up on a PET scan, even though you and your doctors know they are there?
We have all sorts of spots, cysts, scars, etc. in our bodies at any given time and as long as they are not metabolically active, meaning the cancer cells are not active... then heck, I'm with you on that one! I could live with that too
I am sooooo thrilled for you!!! I hope you are planning on one heck of a celebration!!
Hugggggggs,
Cheryl
Hi KIMBY
I am sooooo thrilled for you. I remember when I posted "calling all stage IV's" looking for encouragement. When you responded I was so impressed with they way you "lived" with the disease. Your attitude is super and I hear that NEAD has a very very close relationship with NED!!!!
I am having scanxiety- it's less than 2 weeks away.Keep your fingers crossed.
Couldnt be happier for you.
Dawn0 -
u deserve a break todayyyydmdwins said:Hooray!
Hi KIMBY
I am sooooo thrilled for you. I remember when I posted "calling all stage IV's" looking for encouragement. When you responded I was so impressed with they way you "lived" with the disease. Your attitude is super and I hear that NEAD has a very very close relationship with NED!!!!
I am having scanxiety- it's less than 2 weeks away.Keep your fingers crossed.
Couldnt be happier for you.
Dawn
ahhhKimby....that is good news. Good Girl!!! I am so thrilled for you. Whoops all teary eyed here....hoooorayyyy
hugs and more hugs
~mags~0 -
Wonderful!dmdwins said:Hooray!
Hi KIMBY
I am sooooo thrilled for you. I remember when I posted "calling all stage IV's" looking for encouragement. When you responded I was so impressed with they way you "lived" with the disease. Your attitude is super and I hear that NEAD has a very very close relationship with NED!!!!
I am having scanxiety- it's less than 2 weeks away.Keep your fingers crossed.
Couldnt be happier for you.
Dawn
Hi Kimby:
What absolutely wonderful news. It made my day to read your post. I'm so glad that it is your turn and hope that many more "turns" await others on this board (and beyond).
Have a relaxing, exhilarating, happy day and enjoy your BBQ. Heck. Have seconds and thirds of the BBQ.
Hatshepsut0 -
GreatVickiCO said:Hey Kimby
First of all YEAH!!!!!
I am doing the naked happy dance. OK, only my new nearly bald head is naked! Don't want to scare the cat.
Soon you will drop the A and have your NED.
Many Hugs!! Vicki
Kimby that is great news. I know you are wanting to do the happy dance right about now. It is wonderful that the tumor board was so on your side. It helps to have great board. I am happy for you. Enjoy your summer.
Kim0 -
kimbyVickiCO said:Hey Kimby
First of all YEAH!!!!!
I am doing the naked happy dance. OK, only my new nearly bald head is naked! Don't want to scare the cat.
Soon you will drop the A and have your NED.
Many Hugs!! Vicki
That is very good news, I so longed to hear those words from angels doctors but sadly didn;t happen. It is great hearing people do get rid of the cancer I am happy that you are ned.
michelle0 -
Great news.
wonderful news. Hope you have a wonderful summer. Live it up.0 -
NEAD!
Kimby,
I'm so glad to hear the news you've gotten! No evidence of active disease is wonderful to hear, too! That's the boat I'm now in (except I'm now waiting cause the CEA has inched up), but I was also given the NEAD too. How we both long to hear the NED, but I know we'll take this, for sure!! Enjoy, girl and have fun at that BBQ!
Hugs,
Lisa0 -
Kimby......lisa42 said:NEAD!
Kimby,
I'm so glad to hear the news you've gotten! No evidence of active disease is wonderful to hear, too! That's the boat I'm now in (except I'm now waiting cause the CEA has inched up), but I was also given the NEAD too. How we both long to hear the NED, but I know we'll take this, for sure!! Enjoy, girl and have fun at that BBQ!
Hugs,
Lisa
Only we know how elated words like that make us...it is sometimes surreal until we slap ourselves and know its actually what we've heard....I am so happy for ya girl...I hope in time all of us will be saying the same thing...then NED...then cured...Good Luck and enjoy your longgggg life ....and start with this summer and your BBQ........and keep that pretty smile going .... :-)0 -
WOOHOO!!!Buzzard said:Kimby......
Only we know how elated words like that make us...it is sometimes surreal until we slap ourselves and know its actually what we've heard....I am so happy for ya girl...I hope in time all of us will be saying the same thing...then NED...then cured...Good Luck and enjoy your longgggg life ....and start with this summer and your BBQ........and keep that pretty smile going .... :-)
Kimby,
I am so happy for you; having been in that boat together, I can say it really is nice to see you finally get that break.
I have had great success with my new therapy, too. I am almost tumor-free thanks to Gleevec. I had tumors in all of my organs and in the brain- they didn't think I had more than weeks to live and then... I got my miracle. The Gleevec started shrinking every tumor and most are now gone! I hope to be able to do the happy dance with you, when we both get NED.
With so much love and happiness,
Holly0 -
Holly!hollyberry said:WOOHOO!!!
Kimby,
I am so happy for you; having been in that boat together, I can say it really is nice to see you finally get that break.
I have had great success with my new therapy, too. I am almost tumor-free thanks to Gleevec. I had tumors in all of my organs and in the brain- they didn't think I had more than weeks to live and then... I got my miracle. The Gleevec started shrinking every tumor and most are now gone! I hope to be able to do the happy dance with you, when we both get NED.
With so much love and happiness,
Holly
What FABULOUS news! I can't wait to Happy Dance with you! Miracles do happen, don't they? This is exactly why I never asked "Why me?" - I don't want to ask that now!
Congrats on your news and PLEASE keep me updated. I can't wait for your next news~
Kimby0
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