Topic: Unbelievable PET Scan Results

We received my husband's PET scan results yesterday and we, and his doctors, are amazed.  The PET shows NO CANCER in his liver or abdomen!  Today,  his oncologist told him she believes his tumor is dead and atrophied with the left lobe of his liver.  There are no other visible tumors in his body!  Both the oncologist and our primary care physician are dumbfounded and can't explain what has  happened.

A little history--Dan was diagnosed with cc in August, 2005.  Resection was attempted, but stopped after finding "abdominal studding" --it had spread to his gallbladder, abdomen, and diaphram.  He began treatments with Xeloda and Gemzar in October 2005 and has continued these treatments, except for interruptions because of infections, fluid accumulation and blood clots.  At the time of diagnosis, his tumor measured 6.1 cm.  Subsequent CT scans showed the disease  had stabilized and in early August 2006 the CT showed the tumor had decreased to 3 cm.  The PET scan taken last week shows no active tumors and, like I said above, the oncologist believes the tumor is dead.

We still have a large hurdle ahead of us.  The PET did show some "hypermetabolism" in the pericardial area--the sac surrounding the heart.  We know that this cancer can metasticize to this area, but the oncologist does not believe at this time that it is cancer.  She said it is probably fluid accumulation from the large cyst Dan  has on his liver (he's had this cyst since before diagnosis).  She's ordered an echocardiogram to try and determine what this may be.

Whatever the outcome, we feel we have been given a miracle and we thank God for the gift we have been given.  Seven months ago, our oncologist suggested we call hospice and we even had a hospice volunteer at our home to get us to "sign up" for hospice care.  Dan just wasn't ready to give up so we decided to continue the chemo and keep fighting.

We are cautious and know this disease doesn't let go.  You can never let down your guard and we realize it could all change over night.   But, after 13 months to be told his tumor has died and that there is no sign of cancer in his abdomen--it is more than we could have ever hoped for.   

We will follow through with the echocardiogram and, if it is clear (please pray it is), we are going to USC to see Dr. Lentz to ask what Dan needs to do.  He was suggesting resection when we met with him last and it we are excited to learn if he believes that this is still an option. 

No matter---we are ecstatic and so very thankful.  No matter what happens, we thank God for today and the wonderful news we've been given.  We can't ask for more!

Re: Unbelievable PET Scan Results

Thank you for sharing such wonderful news!  It was just the story we needed to hear to offer hope and encouragement for everyone as they battle their illness.  Keep us posted after your Dr. visits.   My husband's scans are in a week.  I hope we will have similar good news to report.  So happy for your family.
Joyce

Re: Unbelievable PET Scan Results

YEAH!  What great news. My huband had a resection (Whipple Surgery)a year ago and his scan last week was clean!  Its a good news week!  We LOVE it!!!!      Lainy

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Unbelievable PET Scan Results

What beautiful wonderful news! Love to you both!

Re: Unbelievable PET Scan Results

Dan saw the cardiologist today and had his echocardiogram---more great news!  No cancer in the sac surrounding his heart!!  Basically, the PET and echo show no active cancer in him at all!!

Next stop...USC to have Dr. Lentz review his blood tests (CA-19-9 continues to stay low and is down to 67) and scans and give us his opinion.  Hopefully, we'll be able to see  him next week. 

God is so good to us!  We will forever thank Him for this gift of time and hope.  We continue to keep you all in our prayers--please pray for Dan, as well.

Juanita

6 (edited by Ida Tue, 26 Sep 2006 07:43:22)

Re: Unbelievable PET Scan Results

Hello Juanita,

Our father, who is 58, is taking both Gemzar and Xeloda. He's having the same problems with infections and fluid accumulation. His main side effect from the chemo is this problems and some stomach pain. I just wanted to know how they have treated the fluid accumulation. How often this has been drained etc.

It was fantastic to read your story, since our story seems so simular. Our father (he also has 3 daugthers) was going to have surgery in june, but then they found out that the cancer had spread to his abdomen. He started the chemo in august, but because of two infections his first cure is still not finished and has not been evaluated yet. But his last x-ray shows that it seems like the tumors stopped growing since august. His main tumor (klatskin) is placed in the bile duct and has spread to his liver. He also have this "small cell" of spread in his abdomen. 

We would really appriciate to hear more about your husbands treatment, what kind of tumors he had etc. and your experiences.

Ida, and my sisters Stina and Hilde

7 (edited by marions Mon, 05 Nov 2007 16:18:32)

Re: Unbelievable PET Scan Results

Hello Ida, Stina and Hilde,

My husband's scans also showed that the left lobe of his liver had been effected by the spread of CC however, the pathology report following his resection showed otherwise. The klatskin tumor had cut off the blood supply to that lobe causing this part of the liver to atrophy.  As we were told by Dr. Fong at Sloan Kettering, Dr. Calhoun at Sedar Sinea and of course by Dr. Jenkins (who ultimately was chosen by us to perform the surgery) the extent of the spread truly is only visible during the operation. 
Thinking of you
MarionS

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unbelievable PET Scan Results

Fantastic news!  Keep us updated on what Dr. Lenz has to say.

Stacie

Re: Unbelievable PET Scan Results

Juster,

Congratulations on the results of your husband Dan.  It does seem like a miracle. 

Do they recommend this treatment for patients who have had CC resection with negative margins for CC and negative lymph nodes.

Thanks,
Maneesh

Re: Unbelievable PET Scan Results

Juanita,
what wonderful news.  We know miracles still happen in this day and age , we just don't read about them often.  We will pray for you and Dan that this good news continues and you have quality time.  God Bless  Mary Anne

Re: Unbelievable PET Scan Results

It has been a long time since I first posted our great PET scan results.  Unfortunately, our happiness was short lived.  Shortly after my post, Dan was hospitalized several times with pneumonia, heart irregularities caused by fluid accumulation in his lungs, and a severe infection.  It wasn't long after that, that he began  having difficulty swallowing.  An endoscopy showed a tumor in his stomach--this after a PET/CT showed no new tumors.  In fact, a recent CT scan still shows no tumors in his abdomen.   The only way the tumor can be seen is through an endoscopy.

In December, Dan had a medi-port inserted and began TPN (intravenous) feedings.  He has been unable to even swallow fluids.  Worse than that is the constant vomiting and nausea--regardless of whether he trys to eat or not.  This goes on all day and all night.  It has been horrible watching him suffer and be so miserable.    In early February, Dan decided to undero radiation in the hopes of shrinking the tumor so he could get some relief and hopefully, allow him to eat again.  He was warned that the risks of this treatment were high because he had already been radiated in this area in 1991 when he had  stomach cancer.  Generally, you can't receive radiation in the same place twice, but since it's been almost 16 years, the radiologist thought low dose radiation may be safe for him.  It wasn't.  Dan had 18 radiation treatments and the day after his last treatment he began to bleed internally.  In the emergency room, the doctor told us he was dying and to say goodbye.  It was an emotional nightmare for our family.  Finally, an angel doctor came into his room and said he would like to begin blood transfusions and see if he could find the cause of the bleeding and try and stop it.  Through an endoscopy, he found two huge bleeding ulcers, which he cauterized.  The next day, Dan began to bleed again and this time it was his stomach tumor bleeding.  Again it was cauterized and the bleeding stopped. 

After a few days and at least 8 blood transfusions, Dan was released from the hospital.  He was  home only  one day when he collapsed at home.  His blood pressure dropped to 40 over 20.  He was rushed by ambulance to the  hospital where an emergency endoscopy was done and more cauterization to stop internal bleeding.  He was placed in intensive care.  He had another bleed in the hospital and this time 3 areas of his stomach were cauterized.  His hemoglobin dropped to 6.1.  On top of it all, he developed septic shock--his white count went up to 48.  We were again told that he would die and that there was nothing they could do for him and our family went through another day of saying goodbye.  We prayed for a miracle and, as of today, we think we have received one.  As of yesterday, the bleeding has stopped and his white count is now down to 28.   His hemoglobin is up to 12.1.  He has been moved out of ICU.  We know he is not out of the woods, is very weak, and still  has to fight this infection.  More bleeding is still a possibility and he is being monitored closely for this.  But today he was awake and responsive and able to eat a little soft food---and was able to swallow it and keep it down! 

Dan is a true miracle in so many ways.  He survived stomach cancer in 1991, non-hodgkins lymphoma in 1996, and several severe infections and medical emergencies caused by cholangio--though none as severe as his most recent set back.   We truly thought he would not be here today and thank God with all our hearts for the extra gift of time he has given us.

For those of  you that aren't aware, Dan was diagnosed with cholangio in August 2005.  He began chemotherapy in November 2005--Gemzar and Xeloda.  While on radiation, he continued low dose chemo with Gemzar only, since he is unable to swallow the Xeloda pills.   Dan's goal is to come home and be able to eat again--and we pray he will be able to reach this goal.  His gastroenterologist said that it may be possible to insert a stent in his stomach that would allow food to bypass the tumor.  Of course, Dan needs to recover from the infection and bleeding before this can be done.  We have not lost hope that this can still be done and that Dan will eat again and can continue chemo treatments. 

I read this site almost daily but have never read about cholangio spreading to the stomach with anyone else.   Has anyone experienced this and, if so, what treatments have you done?  We expected a lot of things to happen with this cholangio, but never thought his stomach would be blocked by a tumor.  It is so much worse than anything we could have imagined.

I know this post is long and I apologize for going on and on.  So much has happened, yet our family still feels blessed and incredibly thankful to God for all he has given us.  A happy note---our middle daughter gave birth to twin boys about 6 weeks ago.  They were premature and have been in NICU, but we learned today they may come home tomorrow!  Now we just need Dan to come home soon so he can meet his new little grandbabies and given them his special blessing. 

Our love, prayers, and good thoughts go out to all of you battling this terrible disease, and to your families who share this journey with you.   Thank you for sharing with us---you give us all so much strength.