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.