I saw Dr. Burnette last Friday and he was very encouraging. He may be the first doctor I've talked to who had a positive outlook at the start of our meeting. He told me I am among a largely growing population - that being people with uncurable cancers that are able to be treated.
He thought it best to meet with a medical oncologist (he is a radiation oncologist) before I start any treatments. The two of them will map out my treatment plan together. I should hear from him by the end of the week.
As always, I will be in touch.
Thursday, July 30, 2009
Friday, July 17, 2009
Next Dr. Appt
I will have a consultation with Dr. Burnette here in Birmingham at The Wallace Tumor Institute on Friday, July 24. He is with Radiation Oncology. I will know more once I meet with him.
I will be in touch!
Kelly
I will be in touch!
Kelly
Wednesday, July 8, 2009
5 years ago today...
5 years ago today....
5 years ago today I had some major pain in my abdomen area which led to x-rays, scans and surgery. I am happy to sit here tonight and send this update 5 years later. If you know anything about cancer, then you know hitting the 5 year mark is a very big accomplishment. The average life span of someone with my kind of cancer after diagnosis is 32 months. Well, I have certainly beat that. :-) I actually have another goal to reach. I will let you all know when I have reached it, because I will...I have no doubt.
I had scans two weeks ago today. Saw Dr. Amanze a week ago today.
The mediastinal tumor has not changed in size, which is wonderful. This is the tumor very close to my esophogus.
Two of the lung nodules have doubled in size, the largest one now is 2.5 cm's, it's at the base of the left lung.
Dr. Amanze is referring me to an oncologist here in Birmingham.
She wants me to do CyberKnife. Remember that is what they wanted to do in Naples to the medialstinal spot, but it was too dangerous because of its location.
There is now a CyberKnife machine here in B'ham. Just got here 2 months ago.
I am waiting to see if I am a candidate for CyberKnife. If I'm not, then I'll go ahead and start the Sutent. Either way, I'll do Sutent. Sutent is a chemo pill.
I don't know when I'll start, but I will certainly let you all know. I am going to be just fine. You know, I am perfectly healthy other than this cancer. The chemo is what makes me sick and that is something you have to go through so the cancer will not get out of hand.
My mom told me today that God has brought me so far through all of this...and HE has!!
Keep the prayers coming!
Much love,
Kelly
5 years ago today I had some major pain in my abdomen area which led to x-rays, scans and surgery. I am happy to sit here tonight and send this update 5 years later. If you know anything about cancer, then you know hitting the 5 year mark is a very big accomplishment. The average life span of someone with my kind of cancer after diagnosis is 32 months. Well, I have certainly beat that. :-) I actually have another goal to reach. I will let you all know when I have reached it, because I will...I have no doubt.
I had scans two weeks ago today. Saw Dr. Amanze a week ago today.
The mediastinal tumor has not changed in size, which is wonderful. This is the tumor very close to my esophogus.
Two of the lung nodules have doubled in size, the largest one now is 2.5 cm's, it's at the base of the left lung.
Dr. Amanze is referring me to an oncologist here in Birmingham.
She wants me to do CyberKnife. Remember that is what they wanted to do in Naples to the medialstinal spot, but it was too dangerous because of its location.
There is now a CyberKnife machine here in B'ham. Just got here 2 months ago.
I am waiting to see if I am a candidate for CyberKnife. If I'm not, then I'll go ahead and start the Sutent. Either way, I'll do Sutent. Sutent is a chemo pill.
I don't know when I'll start, but I will certainly let you all know. I am going to be just fine. You know, I am perfectly healthy other than this cancer. The chemo is what makes me sick and that is something you have to go through so the cancer will not get out of hand.
My mom told me today that God has brought me so far through all of this...and HE has!!
Keep the prayers coming!
Much love,
Kelly
Monday, May 18, 2009
Updating...
I have scans on June 24th. Will have appointment with Dr. Amanze the following Wednesday to get results. Just letting you know.
Kelly
Kelly
Tuesday, February 24, 2009
2/24/09 Update
Another good report is what I got today from Dr. Amanze. The tumor behind my esophagus has not changed in size since last scans. It's so amazing. This tumor was found in February of 2006. After rounds of chemo in 2006, finishing radiation in May 2007, and having the last chemo treatment on November 16, 2007....the tumor has not grown! Again I say, it's so amazing! I know God has allowed the medicine to work and it is continuing to work. WOW!
The 3 nodules in my left lung have grown just a bit. They have actually grown a slight bit each time I've had scans since 2004. The largest one is 1.6 centimeters in size. Dr. Amanze is okay with them at this point. She did tell me that if they grow to a size of 2 centimeters or more, she wants me to try a new chemo (Sutent or Nexavar). I'm not completely sold on that idea. Of course I am not going to worry about that.
I'll be scanned again in 4 months!
Thanks for letting me share...
Kelly
The 3 nodules in my left lung have grown just a bit. They have actually grown a slight bit each time I've had scans since 2004. The largest one is 1.6 centimeters in size. Dr. Amanze is okay with them at this point. She did tell me that if they grow to a size of 2 centimeters or more, she wants me to try a new chemo (Sutent or Nexavar). I'm not completely sold on that idea. Of course I am not going to worry about that.
I'll be scanned again in 4 months!
Thanks for letting me share...
Kelly
Monday, February 9, 2009
Scans next week
Hello everyone, just wanted to let you know I'll be having scans on Febraury 17th. I'll see Dr. Amanze the following Tuesday to get results.
Kelly
Kelly
Thursday, November 20, 2008
Scan results
I saw Dr. Bhandari this morning. My doctor was on hospital duty this week. I really wanted to see her, but I understand.
I got good news. He said the liver is clean with no tumors. The lung nodules have grown just the least little bit, nothing to be concerned about right now. The tumor between the esophagus and the inferior vena cava blood line has continued to shrink! Is that awesome or what? God continues to heal me and I've not have any chemo/radiation since November 16, 2007. So it's been a whole year since any treatments and the tumor is still shrinking....it gives me chills to think how amazing God is.
I'll have scans again in 3 months. Take care all and again I say thank you to each and everyone of you!
Lots of love,
Kelly
I got good news. He said the liver is clean with no tumors. The lung nodules have grown just the least little bit, nothing to be concerned about right now. The tumor between the esophagus and the inferior vena cava blood line has continued to shrink! Is that awesome or what? God continues to heal me and I've not have any chemo/radiation since November 16, 2007. So it's been a whole year since any treatments and the tumor is still shrinking....it gives me chills to think how amazing God is.
I'll have scans again in 3 months. Take care all and again I say thank you to each and everyone of you!
Lots of love,
Kelly
Monday, November 10, 2008
Quick Update
Just wanted to let everyone know I am feeling GREAT! I've got scans next week. Will update results as I get them. Thanks for all the continued prayers.
Thursday, October 2, 2008
Doctor today
I'm going to see Dr. Zorn this afternoon. It's been almost 2 weeks since he took the port out. Everything is going well.
I have scans on the 18th of November.
Will see Dr. Amanze on that Thursday, November 20th.
I have scans on the 18th of November.
Will see Dr. Amanze on that Thursday, November 20th.
Friday, September 19, 2008
I'm doing well
Hello everyone,
I am home and doing well. We left the hospital around noon and I had a craving for Olive Garden. It was so good. Came home and slept until time for supper. Now I'm back in the recliner and I wanted to let you know I am doing very good. I'm sure I'm about to go back to sleep.
Hope everything is well with all of you,
Kelly
I am home and doing well. We left the hospital around noon and I had a craving for Olive Garden. It was so good. Came home and slept until time for supper. Now I'm back in the recliner and I wanted to let you know I am doing very good. I'm sure I'm about to go back to sleep.
Hope everything is well with all of you,
Kelly
Wednesday, September 17, 2008
Minor Surgery
Hello everyone, I will be getting my port taken out this Friday, September 19th. Don't know what time as of right now. Will find that out tomorrow. The port has been giving me some problems, so we've decided to take it out. Not going to have another put in with the hopes that I won't need it.
I have scans again on Tuesday, November 18th and will see Dr. Amanze on Thursday, November 20th.
I will post again on Saturday to let you know how I'm doing. The surgery is minor and should take no more than 10 - 15 minutes. I will go home and sleep for hours I'm sure.
Hope everyone is well,
Kelly
I have scans again on Tuesday, November 18th and will see Dr. Amanze on Thursday, November 20th.
I will post again on Saturday to let you know how I'm doing. The surgery is minor and should take no more than 10 - 15 minutes. I will go home and sleep for hours I'm sure.
Hope everyone is well,
Kelly
Saturday, July 26, 2008
Scans report
I had scans Wednesday, July 23rd. Saw Dr. Amanze yesterday, Friday, and got a good report. The is no change in the liver which is wonderful. One of the nodules in the lung has grown 1 mm, which is no big deal. It's not even 1 cm, so we are not worried about that. And the most amazing news is the mediastinum node appears to be smaller. How awesome is that. My last radiation was end of March 2007 and the last chemo was November 2007 and it's STILL SHRINKING! How awesome is that? Don't worry, I know it's not just the medicine....I know God has his had directly over me, no doubt in my mind. I've known from the very beginning God is in complete control of this journey.
Dr. Amanze was pleased and she'll see me again in 4 months. I guess I'll have scans then, not exactly sure. One thing for sure, I will let you know.
Burt and Mama were right there beside me when I got the good news.
I want to share about my friend Rachel. I've told you all about her several times....she has been my hero during all of this since the first time I read her post on Sallie's blog. (Another awesome way God works) Even though I've not met Rachel in person, we've emailed and talked on the phone, and I know she has one of the sweetest hearts ever. While God has chosen to keep me all clear, he is letting Rachel fight the battle yet another time. I have no doubts, the doctors will get it all though. I will share her latest email with you.....
Hello!
I apologize in advance that this information is coming to you via mass email but this is the quickest and easiest way for me to tell you. Sorry.
Some of you might know that I recently had a biopsy done on a suspicious lesion on my liver. The results came back this week and confirmed that it is cancer. There is only one tumor and my doctors are confident that we have caught it early and that treatment will be successful. I don't have a lot of information to offer you right now but I do know that within the next couple of weeks I will have surgery to burn the tumor. The surgery is pretty minor but will leave me with sore ribs so if you see me around hug gently please :) I'm not sure that I will take chemo at this point but it is a possibility that I am discussing with my oncologist. I will try and keep you all posted but I'm not very great at that so feel free to email me if you haven't heard anything in a while. Sorry again for the bombshell.
Rachel
Okay, here's the deal....while we are giving God thanks for my good news, please continue to pray for Rachel as she is going through this surgery.
I am extremely lucky to have so many people in my corner....
Thanks to you all...Much love,
Kelly
Dr. Amanze was pleased and she'll see me again in 4 months. I guess I'll have scans then, not exactly sure. One thing for sure, I will let you know.
Burt and Mama were right there beside me when I got the good news.
I want to share about my friend Rachel. I've told you all about her several times....she has been my hero during all of this since the first time I read her post on Sallie's blog. (Another awesome way God works) Even though I've not met Rachel in person, we've emailed and talked on the phone, and I know she has one of the sweetest hearts ever. While God has chosen to keep me all clear, he is letting Rachel fight the battle yet another time. I have no doubts, the doctors will get it all though. I will share her latest email with you.....
Hello!
I apologize in advance that this information is coming to you via mass email but this is the quickest and easiest way for me to tell you. Sorry.
Some of you might know that I recently had a biopsy done on a suspicious lesion on my liver. The results came back this week and confirmed that it is cancer. There is only one tumor and my doctors are confident that we have caught it early and that treatment will be successful. I don't have a lot of information to offer you right now but I do know that within the next couple of weeks I will have surgery to burn the tumor. The surgery is pretty minor but will leave me with sore ribs so if you see me around hug gently please :) I'm not sure that I will take chemo at this point but it is a possibility that I am discussing with my oncologist. I will try and keep you all posted but I'm not very great at that so feel free to email me if you haven't heard anything in a while. Sorry again for the bombshell.
Rachel
Okay, here's the deal....while we are giving God thanks for my good news, please continue to pray for Rachel as she is going through this surgery.
I am extremely lucky to have so many people in my corner....
Thanks to you all...Much love,
Kelly
Tuesday, June 24, 2008
Small Update
I saw Dr. Amanze last week. She said I'm looking good. Blood work was good. I'll have scans on July 21st. For the past year I've only had chest scans. I asked Dr. Amanze to please let me get abdomen, pelvic, and chest scans. I wanted to get a good look at the liver. I'll report my good news as soon as I get the results!
Thanks to everyone for your continued support...
I appreciate you more than you will ever know.
Thanks to everyone for your continued support...
I appreciate you more than you will ever know.
Saturday, April 19, 2008
April Scan results
Hello everyone....as promised I am updating. It's pretty late, but I don't really want to go to sleep. I saw Dr. Amanze today and there is no new growth, that's what we wanted to hear. There was no change in size of the tumor or the lung nodules. Isn't that wonderful!!!!!!! I was very heavy hearted walking in to the appointment. Needless to say, walking out, I felt a huge weight had been lifted off me. Thank you all for the prayers, thoughts, and never ending support. I got in the car, put the top down and rode home just breathing in the fresh air.
I'll see Dr. Amanze again in 2 months and I'll have scans in 3 months.
I'll be in touch!
Kelly
I'll see Dr. Amanze again in 2 months and I'll have scans in 3 months.
I'll be in touch!
Kelly
Wednesday, April 16, 2008
change of plans
Just wanted to let everyone know that I am having my scans today and will see Dr. Amanze Friday. Just wanted to update.
I'll be in touch on Friday.
Kelly
I'll be in touch on Friday.
Kelly
Sunday, April 13, 2008
Been to long....
Sorry I've not updated in a while. Things are going really well. I have scans this Friday. Will meet with Dr. Amanze on Tuesday. (of course I will call my nurse friend and find out asap about the results)
I've started going to the gym and exercising. It feels really great.
I promise to update as soon as I find out scan results.
Again, sorry I've not updated in a while...and thanks for all the support.
Much love,
Kelly
I've started going to the gym and exercising. It feels really great.
I promise to update as soon as I find out scan results.
Again, sorry I've not updated in a while...and thanks for all the support.
Much love,
Kelly
Tuesday, January 8, 2008
Scan results
I saw Dr. Amanze today. Good news is what we got. There was no change in the tumor. She wants me to continue with NO chemo. :-) I will be scanned again in 3 months. We are very happy and very thankful. Thanks for letting us share this wonderful news with you all!
Friday, December 28, 2007
Scans next week
Hello all....I do hope you all had a wonderful Christmas and enjoyed time with your families as I did.
I am scheduled to have scans on Friday, January 4th at 2:15. I'll have to wait till the next Tuesday, January 8th at 1:30 to get results from Dr. Amanze. We'll certainly be looking for good news. Hopefully I won't have to do any more chemo. I have certainly enjoyed being off of that yucky stuff.
My hair is starting to grow back.
I'll be in touch with the results!
I am scheduled to have scans on Friday, January 4th at 2:15. I'll have to wait till the next Tuesday, January 8th at 1:30 to get results from Dr. Amanze. We'll certainly be looking for good news. Hopefully I won't have to do any more chemo. I have certainly enjoyed being off of that yucky stuff.
My hair is starting to grow back.
I'll be in touch with the results!
Friday, December 7, 2007
Just updating....
Hello everyone,
Just wanted to let you all know that I am doing well and life is good. It's been almost a month since I last posted..where does the time go? I had my last treatment on November 16th and the break has been wonderful. I had blood work about two weeks ago and everything looked good. I was pretty tired and puney feeling the first two weeks after the last treatment, but feeling better and better.
I don't have a date yet for my scans in January, but I will keep you all posted.
Hope you are all enjoying the holidays! Isn't it such a wonderful time of the year...I just love it.
Just wanted to let you all know that I am doing well and life is good. It's been almost a month since I last posted..where does the time go? I had my last treatment on November 16th and the break has been wonderful. I had blood work about two weeks ago and everything looked good. I was pretty tired and puney feeling the first two weeks after the last treatment, but feeling better and better.
I don't have a date yet for my scans in January, but I will keep you all posted.
Hope you are all enjoying the holidays! Isn't it such a wonderful time of the year...I just love it.
Friday, November 9, 2007
Exciting News :-)
Hello everyone! I am typing this with a smiling face. I saw Dr. Amanze today and she said I will finish this cycle a week from today and then take a break from the chemo. I am so happy. We'll do scans in January, so that means I'll get at least a 2 month break. I can't tell you how happy I am right now. She continues to say that the goal of the chemo is to make sure there is no new growth. If we get shrinkage on the tumor, then that is great...but the goal is to have no new growth. She told me we have options but she doesn't want to ware my body out. She is wonderful. You all know how much I appreciated Dr. Nguyen, and I must tell you....she is just as good. I can't say enough good things about her. She told me today that she was honored to be my doctor and that I was going to make it. She hugged my neck and told me that I was very special. Of course she made me cry and I thanked her for thinking outside the box for me.
I just wanted to share my good news with my huge support team out there! Thank you all for the prayers, I continue to feel them. You all are amazing!
Much love,
Kelly & Burt
I just wanted to share my good news with my huge support team out there! Thank you all for the prayers, I continue to feel them. You all are amazing!
Much love,
Kelly & Burt
Tuesday, October 16, 2007
Doctor Update
I saw Dr. Amanze today. She and I are thinking the same, thank goodness. She wants me to have scans after this round of treatments, then two more. That would mean the scans would be the week of December 10th. She is thinking that maybe I can stop this chemo regimen and possibly do something else. Just wanted to update you all.
Monday, October 15, 2007
Starting another cycle
Hello all...I started another round of treatments today. Red blood cell count is a little low. Will get a shot of Araness tomorrow to help with that. Still very tired. The Araness should help with that also. All in all, everything is going pretty good.
Sunday, September 30, 2007
Results from Scans
I found out Friday my results. The lung nodules have not changed in size. The paraesophageal mass appears to have shrunk by about 20%. Dr. Amanze talked to me about the dangerous location of the paraesophageal mass. I told her I understood. We will keep on doing the chemo and scan again in 3 months.
Monday, September 24, 2007
Update
I know it's been awhile since I've posted....sorry!
I started my fourth cycle today.
Had a PET scan last Friday.
Dr. Amanze said the lung nodules appeared to be smaller. The esophageal mass was difficult to see. She wants me to have a CT scan of the chest to better see the esophageal mass....or who knows, maybe it's not there. Wouldn't that be great. I'll have the scan Wednesday.
I've been doing good. I get tired real easy, but that's nothing new.
All in all, things are going well.
I started my fourth cycle today.
Had a PET scan last Friday.
Dr. Amanze said the lung nodules appeared to be smaller. The esophageal mass was difficult to see. She wants me to have a CT scan of the chest to better see the esophageal mass....or who knows, maybe it's not there. Wouldn't that be great. I'll have the scan Wednesday.
I've been doing good. I get tired real easy, but that's nothing new.
All in all, things are going well.
Thursday, August 30, 2007
Radiation Oncology Appointment
I saw Dr. Shah (radiation oncologist) this afternoon.
Since I've been having some trouble swallowing, he suggested once again that I see a G.I. doctor and have an endoscopy and possibly have my esophagus stretched.
He is going to contact Dr. Amanze (my medical oncologist) to see if she says it's okay for me to see the G.I. doc. Not sure what will happen, but I will keep you posted.
I've enjoyed my week off of chemo. I start back on Tuesday.
Still have lots of numbness in my fingers.
I'm sporting a new hair style now...let's just say it doesn't take me much time to fix my hair...haha. Actually I just have to decide which hat, scarf or turbin to wear. My sweet mother-in-law is making me my own special hats. She even made me an Auburn one. I'll be sporting that one on Saturday.
I'll be in touch soon.....
Kelly
Since I've been having some trouble swallowing, he suggested once again that I see a G.I. doctor and have an endoscopy and possibly have my esophagus stretched.
He is going to contact Dr. Amanze (my medical oncologist) to see if she says it's okay for me to see the G.I. doc. Not sure what will happen, but I will keep you posted.
I've enjoyed my week off of chemo. I start back on Tuesday.
Still have lots of numbness in my fingers.
I'm sporting a new hair style now...let's just say it doesn't take me much time to fix my hair...haha. Actually I just have to decide which hat, scarf or turbin to wear. My sweet mother-in-law is making me my own special hats. She even made me an Auburn one. I'll be sporting that one on Saturday.
I'll be in touch soon.....
Kelly
Saturday, August 25, 2007
Week off
I'm finished with 2 cycles....4 weeks of treatment. I feel good, just really tired. Fingertips are still numb, feels very weird. Everything is going well.
I'll be in touch soon.
I'll be in touch soon.
Wednesday, August 15, 2007
Cycle 2 begins....
Monday I saw Dr. Amanze and got the scans results. There is no new growth in any of the tumors. That is Wonderful! Apparently there is pneumonia on my left lung. She said there was nothing to be done about this. The pneumonia was caused from the radiation.
Dr. Amanze was very surprised that I already had neuropathy (numbness and tingling) in my fingertips and feet this soon into the treatment.
Dr. Amanze wants to do scans again the week of September 17th. This will be after 3 cycles of the chemo.
At the hospital they gave me the Irinotecan over an hour and a half. Monday I started getting chemo at Dr. Amanze's office. They decided to give it to me in 45 minutes. Fine with me.
She also cut the amount of Decadron (steroid) from 8 mg to 4 mg. Hopefully this will help with the lack of sleep and the tiredness on my week off.
The Vincristine is also causing me not to sleep well at night.
I must say, so far so good!
BTW, Burt and I had a fabulous time on the cruise.
More later~
Dr. Amanze was very surprised that I already had neuropathy (numbness and tingling) in my fingertips and feet this soon into the treatment.
Dr. Amanze wants to do scans again the week of September 17th. This will be after 3 cycles of the chemo.
At the hospital they gave me the Irinotecan over an hour and a half. Monday I started getting chemo at Dr. Amanze's office. They decided to give it to me in 45 minutes. Fine with me.
She also cut the amount of Decadron (steroid) from 8 mg to 4 mg. Hopefully this will help with the lack of sleep and the tiredness on my week off.
The Vincristine is also causing me not to sleep well at night.
I must say, so far so good!
BTW, Burt and I had a fabulous time on the cruise.
More later~
Thursday, August 9, 2007
Updating...
I'm in my week off of chemo. I've been extremely tired this week.
While I was doing chemo the 2 previous weeks, I received two medications before getting the chemo, Zofran and Decadron. The Zofran is to prevent nausea and the Decadron (which is a steroid) helps the Zofran to work even better.
While I was getting the steroids the previous 2 weeks, I was feeling good, had energy, and had the appetite of a growing teenager.
Monday started my week off, which started the tiredness and more tiredness, b/c I'm not getting the steroid this week. Speaking of teenagers, my face looks like I'm 15. The steroid is causing my face to break out big time.
Burt and I are going on a cruise tomorrow, so I'm hoping to get some good rest out in the open seas.
I start back on chemo Monday, 8/13. I'll see Dr. Amanze on Tuesday, 8/14.
I talked to the nurse about the scans I had on 7/20. She said there was no new growth. Everything seemed to be the same size in the lungs and the paraesophageal mass. There was a new cyst on my right ovary.....I'm going to get that checked out on Tuesday, 8/14.
Of course, I'll be in touch soon!
While I was doing chemo the 2 previous weeks, I received two medications before getting the chemo, Zofran and Decadron. The Zofran is to prevent nausea and the Decadron (which is a steroid) helps the Zofran to work even better.
While I was getting the steroids the previous 2 weeks, I was feeling good, had energy, and had the appetite of a growing teenager.
Monday started my week off, which started the tiredness and more tiredness, b/c I'm not getting the steroid this week. Speaking of teenagers, my face looks like I'm 15. The steroid is causing my face to break out big time.
Burt and I are going on a cruise tomorrow, so I'm hoping to get some good rest out in the open seas.
I start back on chemo Monday, 8/13. I'll see Dr. Amanze on Tuesday, 8/14.
I talked to the nurse about the scans I had on 7/20. She said there was no new growth. Everything seemed to be the same size in the lungs and the paraesophageal mass. There was a new cyst on my right ovary.....I'm going to get that checked out on Tuesday, 8/14.
Of course, I'll be in touch soon!
Thursday, August 2, 2007
Thursday.....
Tomorrow is my last day of the first cycle. I'm so glad. Today I have not felt so great. I guess it's the cumulative effect of the chemo. The tips of my fingers are very numb. I'm getting hot flashes very tired, and just feeling a little achy.
I'm looking forward to a week off.
Take care everyone!
I'm looking forward to a week off.
Take care everyone!
Monday, July 30, 2007
Week two begins.....
I've got 5 treatments this week. One down....doing good so far. Still numb in my fingertips.
I have appointment with Dr. Amanze on Tuesday, August 14th.
I guess I will have to wait till the appointment to get my last scan results.
I'll be in touch....
I have appointment with Dr. Amanze on Tuesday, August 14th.
I guess I will have to wait till the appointment to get my last scan results.
I'll be in touch....
Saturday, July 28, 2007
Finished with one week!
Just letting you all know that I'm done with the first week. Last night my feet started tingling a little bit and this morning my fingers are just the least bit numb on the tips. This is from the Vincristine I received on Monday.
No other side effects and that is great!
Just wanted to keep you all updated!
Have a great weekend.........
No other side effects and that is great!
Just wanted to keep you all updated!
Have a great weekend.........
Tuesday, July 24, 2007
Two days down.....
Just wanted to let you all know that I am feeling well. No side effects.....YIPPEE!
I'll be in touch!
I'll be in touch!
Monday, July 23, 2007
First day....done
I've completed the first day of chemo. It took about 4 hours and now I'm resting. Just wanted you all to know I'm doing good and we are going to make it!
Saturday, July 21, 2007
Confusion
I think I need to clarify one thing. I will not be admitted to the hospital on Monday and Tuesday. I will only recieve the chemo treatment at the hospital b/c the doctors office can't get the medicine yet. It takes them about a week b/c of insurance.
Sorry for the confusion.
Sorry for the confusion.
Wednesday, July 18, 2007
The Plan
I saw Dr. Amanze today and she was a totally different doctor from last time. She was very nice and prepared for my visit this time. :-)
I will have scans this Friday (7/20) and will start chemo on Monday, July 23rd. The regimen is what Dr. Nguyen recommended and is the same thing Rachel did....Irinotecan and Vincristine. Here's hoping I have as much success with it as Rachel did.
I will have my first two days of chemo at the hospital and then after that will have it at Dr. Amanze's office. I will also attend a Chemo Awareness class on Monday night.
When I start Monday, I will go for 2 weeks and then have a week off. Then another 2 weeks and a week off. And the cycle repeats....don't know how long. I will have scans periodically.
Thanks for all your support and your thoughts, I can feel them each and every one.
Much love to you all....
Kelly
I will have scans this Friday (7/20) and will start chemo on Monday, July 23rd. The regimen is what Dr. Nguyen recommended and is the same thing Rachel did....Irinotecan and Vincristine. Here's hoping I have as much success with it as Rachel did.
I will have my first two days of chemo at the hospital and then after that will have it at Dr. Amanze's office. I will also attend a Chemo Awareness class on Monday night.
When I start Monday, I will go for 2 weeks and then have a week off. Then another 2 weeks and a week off. And the cycle repeats....don't know how long. I will have scans periodically.
Thanks for all your support and your thoughts, I can feel them each and every one.
Much love to you all....
Kelly
Tuesday, July 17, 2007
Appointment tomorrow
I have an appointment with Dr. Amanze tomorrow at noon. She is the oncologist I was referred to since Dr. Nguyen is no longer here. Just wanted to let everyone know. I'll update after the appointment.
Monday, July 16, 2007
July 11, 2007
Memorial Sloan Kettering
Dr. Abou-Alfa
Got to the appointment went in around 12 noon. Dr. David Huitzil, from Mexico, came in and did complete history. He had done a complete research of my records and he checked me over.
I had a time line of all my events and his were accurate with mine. I told Dr. Huitzil of the different regimens suggested to me. Irinotecan & Vincristine. I also told him of the three options that Mayo gave me. 1. Nexavar & Adriamycin 2. RFA 3. Monitor w/ scans. He left to get Dr. Abou-Alfa. Dr. Abou-Alfa came in and he was in there for around 25 minutes. He started off by saying, I guess you are here to see what I recommend you do. He said I realize you’ve been going through this for several years now and at this point I recommend you to do Nexavar with possible Adriamycin. He said he would not do the Irinotican and Vincristine. He said there are no studies and no proven facts that this would work. He said the doctor that recommended that regimen was way before their time and if it did work for someone else, that is great but it may not work for me. I told him that the Irinotecan and Vincristine worked for Rachel after doing it for 1 ½ years and he said you can’t go on what someone else has done. (This kinda threw me for a loop b/c there are no proven studies for this type of cancer, so what else do you have to go on besides what someone else has done???)
I asked did he have any patients he was treating with Nexavar and he said yes. He said it’s not a proven drug for FHC. He said he was nervous about the Adriamycin with Nexavar b/c the doctor would definitely need to know what they were doing with combining the two drugs. With the Adriamycin you have to be very careful with the heart. You have to have Muga scans to make sure your heart can handle the drug. By the way, Nexavar is a pill you would take every day and Adriamycin you would take by shot in the muscle once every 3 weeks.
I asked him if the tumor could be resected and he said absolutley not. He said he would not do the RFA at all.
I told him some had suggested to monitor with scans only and he said he would definitely not do that. He would be active in treatment. He said as you know this cancer is not curable, but it is treatable. You don’t sit and wait for something to happen, for new growth.
He told me I looked good and healthy. I asked how long would he do the Nexavar and possible Adriamycin and he said forever. It would be lifelong. He said you do it for as long as your body can stand it. He said you would have to monitor very carefully while doing this. I asked him if the chemo would get rid of the tumors or would it shrink them and he said no. He said the chemo would be done to stop new growth. Again he said he strongly suggested not to do the Irinotecan and Vincristine.
Side effects of Nexavar would be rash, fatigue, diarrhea, rare side effect is bleeding....again very rare. 1% chance.
Adriamycin, lose hair, orange urine, monitor hear with Muga scans for heart.
I asked him about what dosage to give and he said the doctor would know. It’s a routine dosage. It’s a normal protocol.
He told me to be very careful of what I read on the internet. He said each persons body is different and I can’t go on what they experienced.
Memorial Sloan Kettering
Dr. Abou-Alfa
Got to the appointment went in around 12 noon. Dr. David Huitzil, from Mexico, came in and did complete history. He had done a complete research of my records and he checked me over.
I had a time line of all my events and his were accurate with mine. I told Dr. Huitzil of the different regimens suggested to me. Irinotecan & Vincristine. I also told him of the three options that Mayo gave me. 1. Nexavar & Adriamycin 2. RFA 3. Monitor w/ scans. He left to get Dr. Abou-Alfa. Dr. Abou-Alfa came in and he was in there for around 25 minutes. He started off by saying, I guess you are here to see what I recommend you do. He said I realize you’ve been going through this for several years now and at this point I recommend you to do Nexavar with possible Adriamycin. He said he would not do the Irinotican and Vincristine. He said there are no studies and no proven facts that this would work. He said the doctor that recommended that regimen was way before their time and if it did work for someone else, that is great but it may not work for me. I told him that the Irinotecan and Vincristine worked for Rachel after doing it for 1 ½ years and he said you can’t go on what someone else has done. (This kinda threw me for a loop b/c there are no proven studies for this type of cancer, so what else do you have to go on besides what someone else has done???)
I asked did he have any patients he was treating with Nexavar and he said yes. He said it’s not a proven drug for FHC. He said he was nervous about the Adriamycin with Nexavar b/c the doctor would definitely need to know what they were doing with combining the two drugs. With the Adriamycin you have to be very careful with the heart. You have to have Muga scans to make sure your heart can handle the drug. By the way, Nexavar is a pill you would take every day and Adriamycin you would take by shot in the muscle once every 3 weeks.
I asked him if the tumor could be resected and he said absolutley not. He said he would not do the RFA at all.
I told him some had suggested to monitor with scans only and he said he would definitely not do that. He would be active in treatment. He said as you know this cancer is not curable, but it is treatable. You don’t sit and wait for something to happen, for new growth.
He told me I looked good and healthy. I asked how long would he do the Nexavar and possible Adriamycin and he said forever. It would be lifelong. He said you do it for as long as your body can stand it. He said you would have to monitor very carefully while doing this. I asked him if the chemo would get rid of the tumors or would it shrink them and he said no. He said the chemo would be done to stop new growth. Again he said he strongly suggested not to do the Irinotecan and Vincristine.
Side effects of Nexavar would be rash, fatigue, diarrhea, rare side effect is bleeding....again very rare. 1% chance.
Adriamycin, lose hair, orange urine, monitor hear with Muga scans for heart.
I asked him about what dosage to give and he said the doctor would know. It’s a routine dosage. It’s a normal protocol.
He told me to be very careful of what I read on the internet. He said each persons body is different and I can’t go on what they experienced.
Wednesday, July 11, 2007
Our "other" blog
Just in case you are interested in our "other" blog. Here it is...
http://kellyandburtpitts.blogspot.com/
I've put some updates about our trip here in New York.
http://kellyandburtpitts.blogspot.com/
I've put some updates about our trip here in New York.
Appointment is over
Dr. Abou-Alfa reccomended Nexavar and Adriamycin for treatment. Not exactly what I was expecting. He was very nice and he told us to contact him whenever we needed to. We have some big decisions to make. More later......we're going to walk around the big city now.
We've arrived in the Big Apple!
Well, our flight from Tallahassee to Tampa was uneventful. Not the case from Tampa to New York. We were supposed to land at 10:06 p.m. in New York and we took off from Tampa at 10:12 p.m. At one point we were wondering if we would make the appointment......but here we are. We are staying on the 28th floor of the Courtyard Marriott. And I must admit that Burt and Mama were both right, the office building Dr. Abou-Alfa is in is also in this building. He's on the 4th floor. So, we don't even have to leave the building to go to the appointment....later this morning. I've got to get to bed. More tomorrow!
Monday, July 2, 2007
Update
A week from tomorrow we will fly to New York for the appointment at Sloan Kettering.
I also have a follow up appointment with Mayo in a few weeks, if necessary. They have me scheduled to see a cardiothoracic surgeon that day also. Not sure if I'll keep the appointment or not. We'll just wait to see what Dr. Abou-Alfa has to say.
We'll be in touch!
I also have a follow up appointment with Mayo in a few weeks, if necessary. They have me scheduled to see a cardiothoracic surgeon that day also. Not sure if I'll keep the appointment or not. We'll just wait to see what Dr. Abou-Alfa has to say.
We'll be in touch!
Tuesday, June 19, 2007
No new news
I've not heard back from the radiologist from Mayo as of yet. Just patiently waiting.... (yes, I can be patient at times :-)
Thursday, June 14, 2007
New Oncologist, Dr. Amanze June 14, 2007
Today I saw Dr. Amanze, the new oncologist here in Tallahassee. Not exactly what I was expecting. But once you've had the best, anything is a disappointment I guess. Dr. Nguyen spoiled me.
She had not looked at my chart the first time until walking in the room with her head down. Anyway, I'll spare you all the details. I should keep my blood pressure down I guess.
In a nutshell, we are going to wait till I see the doctor at Sloan Kettering before we start anything. She is on board to do whatever he suggests, so that is good.
She guaranteed me she would know more about FHC once I see her again, which will be July 18th, the Wednesday after I see Dr. Abou-Alfa.
At the begining of the appointment I wanted to choke her, by the time we left I did feel a little better about everything.
More to you as I know more....
Kelly
She had not looked at my chart the first time until walking in the room with her head down. Anyway, I'll spare you all the details. I should keep my blood pressure down I guess.
In a nutshell, we are going to wait till I see the doctor at Sloan Kettering before we start anything. She is on board to do whatever he suggests, so that is good.
She guaranteed me she would know more about FHC once I see her again, which will be July 18th, the Wednesday after I see Dr. Abou-Alfa.
At the begining of the appointment I wanted to choke her, by the time we left I did feel a little better about everything.
More to you as I know more....
Kelly
Wednesday, June 13, 2007
Update from Mayo
I got a call from Dr. Walser this afternoon on my way home from the spa. I thought it was time for a little Kelly time. Massage, manicure, pedicure....anyway....
Dr. Walser is a radiation oncologist and he is one of the surgeons that performs the Radio Frequency Ablation. He is going to look at my scans and give me a call back by Friday. I told him my concerns about the lung nodules being small and slow growing and did not see the need to touch them at this point. He said those were valid concerns and since I was so young and otherwise healthy, we would really have to research.
I did ask him about surgically removing the mediastinal lymph node and he said he will have a Thoracic surgeon look at my scans. I will wait to hear back from him on this Friday.
Dr. Walser is a radiation oncologist and he is one of the surgeons that performs the Radio Frequency Ablation. He is going to look at my scans and give me a call back by Friday. I told him my concerns about the lung nodules being small and slow growing and did not see the need to touch them at this point. He said those were valid concerns and since I was so young and otherwise healthy, we would really have to research.
I did ask him about surgically removing the mediastinal lymph node and he said he will have a Thoracic surgeon look at my scans. I will wait to hear back from him on this Friday.
Good News....
I got it, I got the appointment with Sloan Kettering in New York. I will see Dr. Abou-Alfa. He is the liver guru when it comes to my type of cancer. The appointment is July 11th. Less than a month away.
I talked to them two weeks ago and I really didn't think he was going to agree to see me.
I have so many emotions going on right now....happy, anxious, blessed.....
I'll just keep on keeping on.
I'll be in touch!
Kelly
I talked to them two weeks ago and I really didn't think he was going to agree to see me.
I have so many emotions going on right now....happy, anxious, blessed.....
I'll just keep on keeping on.
I'll be in touch!
Kelly
Tuesday, June 12, 2007
Mayo Clinic Visit June 11, 2007
Monday, June 11th, I saw Dr. McDonough at The Mayo Clinic in Jacksonville, FL.
We had a 3 hour visit. He was very attentive and had thoroughly gone through my records. After looking at my scans with another Gastro-Oncologist, they told me they thought I had 3 options at this point. They saw 3, possibly 4 lung nodules in the left lung and saw the paraesophogeal mass.
Option 1. Radio Frequency Ablation to the lung nodules.
Option 2. Nexavar with Adriamycin chemo regimen.
Option 3. Monitor with scans.
I will see the radiation oncologist in a week or so at Mayo to talk about the Radio Frequency Ablation possibilities.
In the meantime I will see the new oncologist here in Tallahassee, Dr. Amanze, on Thursday.
We've made no decisions at this point. Of course I will keep everyone posted.
Take care everyone~
Kelly
We had a 3 hour visit. He was very attentive and had thoroughly gone through my records. After looking at my scans with another Gastro-Oncologist, they told me they thought I had 3 options at this point. They saw 3, possibly 4 lung nodules in the left lung and saw the paraesophogeal mass.
Option 1. Radio Frequency Ablation to the lung nodules.
Option 2. Nexavar with Adriamycin chemo regimen.
Option 3. Monitor with scans.
I will see the radiation oncologist in a week or so at Mayo to talk about the Radio Frequency Ablation possibilities.
In the meantime I will see the new oncologist here in Tallahassee, Dr. Amanze, on Thursday.
We've made no decisions at this point. Of course I will keep everyone posted.
Take care everyone~
Kelly
Last visit with Dr. Nguyen May 2007
I saw Dr. Nguyen this afternoon....
I will have my port taken out and put back in on Tuesday, May 29th. We'll do this in Bessemer at the new Surgery Center. Dr. Issis will do the minor surgery.
Dr. Nguyen has talked with Rachel's doctor about what we should do. (By the way...Rachel is doing very well. She has been on maintenance chemo for over a year and is hopefully about to stop) She has been very helpful to me and very encouraging!
Dr. Nguyen has suggested I start a regimen of chemo in the next few weeks, not sure exactly when. I would do two weeks of chemo and then off for a week. That will complete one cycle. Then I will have two more weeks of chemo and then off a week. You guessed it, that will complete two cycles. Then I will most likely have scans to see if we are getting positive results from this. I am not sure how long I will remain on this chemo regimen. Dr. Nguyen said it could be 6 months, maybe a year. We won't know until we see how my body reacts to the chemo and we see if we are getting a positive response, ie...is the liver tumor along with the lung nodules...are they shrinking? That will be the big question.
The name of the two chemo drugs I may possibly start are:
Irinotecan & Vincristine
That is where we are for now.
I'll be in touch!
Kelly
I will have my port taken out and put back in on Tuesday, May 29th. We'll do this in Bessemer at the new Surgery Center. Dr. Issis will do the minor surgery.
Dr. Nguyen has talked with Rachel's doctor about what we should do. (By the way...Rachel is doing very well. She has been on maintenance chemo for over a year and is hopefully about to stop) She has been very helpful to me and very encouraging!
Dr. Nguyen has suggested I start a regimen of chemo in the next few weeks, not sure exactly when. I would do two weeks of chemo and then off for a week. That will complete one cycle. Then I will have two more weeks of chemo and then off a week. You guessed it, that will complete two cycles. Then I will most likely have scans to see if we are getting positive results from this. I am not sure how long I will remain on this chemo regimen. Dr. Nguyen said it could be 6 months, maybe a year. We won't know until we see how my body reacts to the chemo and we see if we are getting a positive response, ie...is the liver tumor along with the lung nodules...are they shrinking? That will be the big question.
The name of the two chemo drugs I may possibly start are:
Irinotecan & Vincristine
That is where we are for now.
I'll be in touch!
Kelly
Searching for answers....
We are now in search of a new oncologist. Dr. Nguyen has sugessted for me to see a liver oncologist specialist at one of the Cancer Centers.
I have been in touch with Mayo Clinic in Jacksonville, FL and also Sloan Kettering in New York. I'm waiting to hear from both.
I will see Dr. Marie Amanze here in Tallahassee on Thursday, June 14th. I do think it is important to have a local oncologist.
I have been in touch with Mayo Clinic in Jacksonville, FL and also Sloan Kettering in New York. I'm waiting to hear from both.
I will see Dr. Marie Amanze here in Tallahassee on Thursday, June 14th. I do think it is important to have a local oncologist.
Monday, June 11, 2007
Moving on....
I received news that Dr. Nguyen, my favorite doctor in the whole wide world was relocating to California. I was devastated.
I know there are other doctors out there, but Dr. Nguyen is absolutely wonderful and I am so going to miss him.
I know there are other doctors out there, but Dr. Nguyen is absolutely wonderful and I am so going to miss him.
Scans...May 2007
May 21st I was scanned again and found that the tomotherapy did good. There was now a space between the tumor and the inferior vena cava line. Dr. Shah was thrilled.
At this point, we really don’t have an accurate size of the tumor b/c of scarring. Dr. Shah says we will just have to wait and see.
On this same scan, several of the lung nodules that were previously present had doubled in size and there are several new nodules. They also pointed out there is possibly new growth on my liver.
At this point, we really don’t have an accurate size of the tumor b/c of scarring. Dr. Shah says we will just have to wait and see.
On this same scan, several of the lung nodules that were previously present had doubled in size and there are several new nodules. They also pointed out there is possibly new growth on my liver.
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