Finished with treatments

I finished the Cyberknife treatments yesterday. I will see Dr. Tincher in 3 weeks and most likely have scans in one month. Here's to livin' the good life!

First treatment in the books....

Yesterday I had my first Cyberknife treatment. I put my ipod on a favorite playlist, settled in on the table, got as comfy as possible and slept off and on. 2 hours and 5 minutes later, the guy woke me up and told me it was time to get up.
I walked outside and just wanted to shout out loud, "one down, three to go."

I will go for another treatment Monday at 8:00 a.m. Then another at the same time, Tuesday morning. My 4th and final treatment will be Wednesday at 1:30 p.m.

There have been no side effects, :-)
The only thing I guess is I'm having a bit of trouble getting to sleep. Also, I'm waking up early, and that is not normal. This is because of the Decadron (steroid) I'm taking.

I will update soon!
Kelly

Starting Cyberknife tomorrow

I will have 4 treatments of Cyberknife. I will go tomorrow (Thursday), Friday, Monday and Tuesday. The treatment will take 1 1/2 - 2 hours.

Here's to getting rid of the lung nodules! :-)

Planning CT Scan

I had the planning CT Scan today. Dr. Tincher came in and told me how excited they are that we are getting started soon. After the radiation oncologist, pulmonolagist, and the physicist go over the scan from today, the CyberKnife Center will call me in about a week to let me know what the plan is. So I am waiting to hear from them. I will be in touch as soon as I do.

Kelly

The Markers in Lung Nodules are in place

Dr. Seigel, at Brookwood, placed the markers in the lung nodules this past Friday. He explained the entire procedure to me and Mama. He explained it so well that Mama didn't have any questions, that made me laugh. She always has questions!!

There are 3 nodules and he was able to treat two of them as one, meaning he only placed one marker for the 2 nodules at the base of the lung. The other nodule has its own marker.

I was extremely lucky there was no pneumothorax (no puntcure in the lung). That was one of the risks. Another risk is the markers could move from where they were placed.

I will see when I go get scanned on Monday, 9/21. If everything is in place and everything looks good, they will plan the treatment. So I should know that week when the CyberKnife will start.

Thank you all for your prayers.

CyberKnife Approved

Hello all....
I wanted to update what is going on with me.

A week ago today, I saw Dr. Larson, my medical oncologist. After talking with her and listening to her ideas, we decided to try something new. I have known since the beginning of this journey that hormones feed this type of cancer. Dr. Larson wants to try shutting down my ovaries and see what effect this will have. She gave me the Eligard injection and I will see her again in 6 weeks. (Eligard is used for prostate cancer)

Insurance approved the CyberKnife procedure. I will have the "fiducials" (markers) put in on this Friday. I have to be at Brookwood at 7 AM. They will inject the markers, which are tiny gold seeds. It will take 3 needles to get this done. I'm not all that crazy about 3 needles going in my lung, but this is best. This CyberKnife is amazing!

I will see Dr. Tincher (radiation oncologist) on Monday, the 21st. They will do the planning scans that day. I will start the actual treatments soon thereafter.

I will keep everyone posted!
Thanks!

Met with another doctor today

Today I met with a Thoracic Surgeon, Dr. Ronson, at Brookwood. I had to consult with him, since he could possibly be involved with the procedure of putting in the markers for CyberKnife. While talking with him, he asked if I had ever considered having the nodules resected. I told him I didn't think it was an option because other doctors told me that. He told me he could possibly resect one of the lobes of my left lung. The top lobe is where two of the nodules are. He also said he could possibly take the other nodule out completely. He even said that it may be an option to take out the mediastinal tumor. I was excited and overwhelmed at the same time.
I will hear something within 2 days I think. I will update as I know.

So...maybe I won't have to do the CyberKnife. I'll just have to wait to find out.

Thanks to you all!

Moving right along~

Today I had appointment with my new Radiation Oncologist, Dr. Tincher, at Brookwood. I was evaluated for CyberKnife (which is a form of radiation). She sent the paperwork for insurance approval today. Should hear back from that by the end of next week. Once we have insurance approval, then I will have markers put in place. They will put markers in each of the 3 lung nodules. I asked how they get the markers in and she told me by needle, yuck. The markers are little gold seeds. Anyway, after the markers are in place, I'll have to wait about a week for them to settle. Then, I'll take steroids for about 3 days. Then....I should be ready for treatment. The actual treatment will last about an hour and a half. I think she said I would have 3 treatments. Not sure how much time in between treatments. So...it will probably be about a month or so before I start the actual CyberKnife treatment.

After the office visit with Dr. Tincher, I had CT Scans and labs.
I must say, this was the best time I had getting scans. I made friends and had people laughing. As far as being at the doctor and having scans and getting blood drawn, I had a really great day! Brookwood really knows how to treat their patients. Once again, God has put me in the right place.

I will post as I know more!

KELLY

A new day - a breath of fresh air~

I had an appointment with medical oncologist today at Brookwood Medical Center here in Birmingham. She was so very nice and knowledge about the chemo drug I should be starting soon. I have appointment with radiation oncologist soon to be evaluated for cyberknife. She talked about starting me on Nexavar after cyberknife. I asked her why Nexavar instead of Sutent....after discussing a bit, she is going to tell me which will be better for me at my next appointment. I should hear from her soon.

On a side note, I ask all of you to remember my friend Dave in your prayers. He has just been diagnosed with Membranous Glomerulonephritis. He will be meeting with oncology next week to discuss starting chemo. He does not have cancer. His kidneys are shutting down and the chemo IS going to get rid of the bad cells and the kidneys WILL begin to work properly. That is my prayer and I do hope you will all join me.

I spoke to him earlier this evening and we were comparing doctor visits from today. He said his doctor has never treated anyone with Membranous Glomerulonephritis. We couldn't help but laugh when I told him my new oncologist has never treated anyone with my type of cancer. I keep reminding Dave it's good to laugh!

Thank you all for allowing me to share and I greatly appreciate each and everyone of you!
You are my angels that I just don't get to see everyday.
Much love,
Kelly

Next appointment

I have an appointment on Monday, August 17th. I think it's at 11:00. Will update afterwards.

Hurdles

Well, I saw the medical oncologist this morning. I got there at 7:40 a.m. Went back to the room at 8:25 a.m. and the doctor walked in at 11:20. You would think that would disappoint me or surprise me, but it did not. I guess you get used to these things like waiting.

Anyway, at this stage in the game, after dealing with this for 5 years, I do expect a few things:

#1. I expect once a referral has been made, I expect the doctor to have at least looked at my chart and to know what type of cancer I have.
#2. I do not have HCC, I have FHC, please notice the difference Dr.
#3. Please do not belittle my knowledge with the cancer that I have dealt with for the past 5 years.

Needless to say, I was not very pleased with my visit this morning. He offered nothing to me. Many of you know how I feel about doctors. When you see them for the first time, it's like an interview. This doctor will not get a second interview.

So I am on to looking for another medical oncologist. A referral is in the works as I type this.
Please pray that I find the right doctor for me.

On another note....lunch was fabulous. P.F. Changs is one of my favorites. As we sat there for lunch, we were talking and Mama commented on a particular doctor telling me to enjoy life now b/c I wouldn't be around much longer to enjoy it (of course, he didn't get the job either). (BTW, he told me that in March of 2006... Little did he know!!)
I commented to Mama and Daddy that if everyone listened to what the first doctor said, it would be a sad world. And then it HIT me.....5 years ago today, I had my first surgery! 5 YEARS AGO TODAY. August 12, 2004, I had a partial liver resection and my doctor told me there was nothing else I could do after the surgery. That is when I learned in the medical field, you have to take a lot of the responsibility for your care in your own hands. Thanks to my family, I have not had to do that alone. So...once I realized it has been exactly 5 years since I had surgery....we made a date for August 12, 2014, to have lunch at the same P.F. Changs, to celebrate another 5 years. Daddy called Greg and requested his presence for that date. I am already looking forward it.

Thanks for letting me share!

With love....Kelly

New Doctor

I will see Dr. Posey at the Kirklin Clinic in Birmingham on this Wednesday at 8:00 a.m. I will update shortly after. Dr. Posey is the Medical Oncologist that will be working with the radiation guy for my treatment plan.

Appointment next Thursday

I got a call from Dr. Burnette (radiation oncology) today. I am scheduled to see Dr. James A. Posey (medical oncology) Thursday, August 13th.
Just wanted to let everyone know.

Kelly

Haven't heard anything yet...

Dr. Burnette did call me Friday afternoon to tell me he has not found a medical oncologist yet for me. He has someone in mind, but they were on vacation last week. He told me he didn't want just anyone handling my special case.
Just wanted to keep you all up to date.

Kelly

Appointment update

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.

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

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

Updating...

I have scans on June 24th. Will have appointment with Dr. Amanze the following Wednesday to get results. Just letting you know.

Kelly

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

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