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!

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.

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

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.

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.

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.

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.

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

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.

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~

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!

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!

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....

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.........

Two days down.....

Just wanted to let you all know that I am feeling well. No side effects.....YIPPEE!
I'll be in touch!

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!

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.

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

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.

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.

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.

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!

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!

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 :-)

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

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.

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

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

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

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.

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.

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.

Side Effects from Tomotherapy

My side effects were tiredness. It was a cumulative effect for sure. The more radiation I had, the more tired I would be. Because of the tumor’s location, the radiation gave me difficulty swallowing. I did have to do a liquid diet for a few weeks. I did have some nausea during the radiation.

Tomotherapy

Dr. Shah (radiation oncologist) administered the tomotherapy.

I started tomotherapy on March 13th and finished May 1st. I went everyday (Monday thru Friday) and I was only there for about 20 to 25 minutes each time. I saw Dr. Shah once a week. The main difference in the tomotherapy radiation is they scan you before each treatment. That way they know exactly where to target. It’s amazing!

March 2007 Radiation

March 2007, I was scanned and another para esophageal mass was found. This time it was dangerously close to the inferior vena cava line. If the tumor invades the inferior vena cava, it could cause internal bleeding and I would die within minutes I was told.
One of the main concerns is there was no space between the tumor and the inferior vena cava.

This is when I did 7 weeks of radiation (Tomotherapy). There are 90 Tomo machines in the WORLD and 4 in the state of Florida. One of the machines happened to be across the street from Dr. Nguyen’s office. How lucky am I. :-)

November 2006

In November 2006, I was scanned again and no new growth was found and the liver tumor continued to shrink.

Side Effects from 5FU & Interferon

My side effects were nausea, diarrhea, soreness in my feet with some blisters, mouth sores, severe headaches and migraines, some depression, and of course tiredness.

May 2006 Chemo

May 8, 2006, I started a chemo regimen which consisted of Interferon injections 3 times a week and 5FU which I received through a pump. I did this regimen for 3 weeks then off a week. I did this cycle for 4 months.

At the end, I had scans and the liver tumor had significantly decreased in size and the lung nodules had even decreased in size.

Power of the Internet...My new friend Rachel

Of course, we kept looking. In April 2006, I found Dr. Vinh Lin Nguyen. Three days after I had my first visit with him I got an email from a girl named Rachel in Indiana. She also has FHC and she saw my email on a friends blog. Thank goodness we met (online). She told me about her history, just as I am telling you of mine. I found out her doctors name and Dr. Nguyen called him because she was having some good success from the chemo she was on.

Never give up....

My mother was very diligent to find something that would help me. She was either on the phone or on the internet looking for something. We were not about to give up. She called every Cancer Center in the U.S.

I love you Mama!

Obstacles

The beginning of March I saw an oncologist in Tallahassee. He told me that he really didn't know anything about this type of cancer. He essentialy told me that I would die within 3 months to a year and a half. He told me that there was really no sense in doing any clinical trials, unless I wanted to be a guinea pig because they would do me no good. I was extremely devestated. This was the first oncologist I had dealt with and I seriously thought I was about to die very soon.

It is very sad to me that doctors will talk to patients the way this particular doctor talked to me and my family. I do not mind a doctor being "matter of fact" with me. I do not mind a doctor telling me things that I do not want to hear, if in deed what he is saying is factual. What I do not understand is this doctor admitting he did not know much about this type of cancer and told me I would probably be dead within a year and a half. Very very sad to me!

February 2006

February 2006 - scans.....tumor found attached to liver, para paraesophageal mass. Biopsy done the next morning, confirmed it was metastasis.

Dr. Bynon told me there was really nothing to be done. He said I could try some trial studies if I wanted to. He sent me back to Tallahassee, FL and have not had anymore contact with him since. I tried to talk to him but to no avail. I was very disappointed in him.

November 2005

November 2005 - scans.....no change.

August 2005

August 2005 - scans....nodules still there, no new growth.

May 2005

May 2005 - scans......nodules still in lungs, may have slightly grown, still did nothing.

Happily Married

April 2005 I married my best friend!

I would continue to be scanned at The Kirklin Clinic in Birmingham, AL.

February 2005

February 2005 - scans....small looking nodules still there, have not grown, still not sure.

November 2004

November 2004 - scans....everything seemed to be fine except they said some small looking nodules in my left lung...but not sure what they were. He said we would follow them with scans.

Recovery

My recovery went well. I lived with my mother at the time and she was very helpful to me. I had tons of support. I was very eager to get back on my feet. I had the usual aches and pains after surgery. To walk was a chore, but a neccessity.

I'll never forget when I asked my cousin if he knew how many muscles were used to sniff. He said, "how many?" I said, "I have no idea, but I know it's a lot, b/c everyone of mine hurt when I do sniff." We all got a good laugh from that. Even though it did hurt to laugh...I guess it was good for me.

The begining of my journey....August 2004

I was diagnosed in August 2004, I was 31 at the time.

July 8th, I woke up with severe abdominal pains and later that morning I saw a doctor at the hospital where I worked. Dr. Edge did x-rays and scans. About an hour later he told me he was admitting me because he found a large mass on my liver. They wanted to biopsy the mass but my mother thought better of that.
I was referred to Dr. Steve Bynon at the Kirklin Clinic in Birmingham, AL. He told me I needed to have the scan removed. He said it could possibly be an adnoma or possibly a malignant mass. I was in danger of the mass rupturing, so it had to come out.

In August, I had a partial liver resection. He said the surgery should last about 2 1/2 hours and it ended up lasting 7 hours and 45 minutes. Because of the way my blood vessels were formed at birth, he had to reconstruct my blood vessels. I was literally a text book case he said. I was in SICU for about 3 days. I had surgery on a Thursday and went home the next Thursday. I was told the mass was Fibrolamellar Hepatocellular Carcinoma. He said there would be no treatments done. He said surgery was the cure.

Dr. Bynon told me there was a 70% chance of the cancer coming back within the first year. He did tell me the survival rate after diagnosis was 5 years.

He told me I would be monitored by scans every 3 months for the first year and then every 6 monhts.

My surgery was done at UAB Hospital in Birmingham, Alabama by Dr. Steve Bynon.