Topic: One step forward - two steps back. Discouraging news.

Hello CC Family. Here is an update on our son, Jeff.

In our last post, we discussed our second surgical opinion with Dr. Rick Selby at USC. Dr. Selby wanted to do a PET/CT Scan to get additional information necessary for surgery.

Our PET/CT Scan results showed that Jeff's liver tumor has more than doubled in size since his prior MRI study 3 months ago. He has completed two rounds of Oxaliplatin and Xeloda. Obviously, this regime has not been effective for Jeff. It is as if the chemo nourished the stupid tumor! The tumor in his left lung has not changed but now there is a questionable finding in one of his lymph nodes.

We have an appointment set on Monday with our ONC at UCLA. We were supposed to start our 3rd round of chemo, but I suspect that the ONC will want to change the recipe a bit.

Dr. Selby arranged for an urgent consult with a thoracic surgeon at USC which is set for Tuesday. Our follow up with Dr. Selby is set for Friday along with an MRI of the billiary tree.

The PET/CT Scan results were a bit of a surprise to us because Jeff's symptoms and side effects have actually improved. He continues to be fatigued and has a nagging cough which seems to be his biggest complaint. We are not sure if the cough is related to the lung tumor or something else. His intermittent pain has actually improved.

In any event, Jeff continues to enjoy going to work everyday and does so with a smile on his face. He amazes me.

We knew this was an aggressive cancer, but for the liver tumor to more than double in size in a period of 3 months while on chemo, that's ridiculous! It's a good thing we had the PET/CT scan or we would have continued on the same chemo regime for another two rounds over 6 weeks while the tumor would have continued to grow.

Has anyone else seen this kind of tumor growth in such a short period of time while on chemo?

Happy Thanksgiving to all of our CCF friends and family. CCF is one of the things that we are most thankful for. Thank you CCF members for your love, support, information and personal stories.

Bob & Nancy
(jeff'smom&dad)

Re: One step forward - two steps back. Discouraging news.

Dear Jeff's parents, I am so very sorry to hear this, but I just have a gut feeling that with a change of cocktails they will nail this sucker. It's been done many times.
What a fabulous person Jeff must be. His attitude helps in making you all strong.
Hope you are having a good turkey day. Please let us know what the Docs say. Sadly this shows that CC has a mind of it's own but know that there are many chemo options out there, just have to get the right one. Be strong!

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: One step forward - two steps back. Discouraging news.

Jeff's Mom & Dad;
Happy Thanksgiving to you and your family.  We are praying for you.  What a strong son you have, going to work with the smile.  God bless him.  I am sorry about the treatment not doing the job and will be waiting to hear what the doctor recommends next.  You try so hard and it's so disappointing to deal with this.  Jeff has strength and courage and wonderful parents.
I am not sure how often scans can be done.  And, I don't know how fast the chemo would work if it was going to.
I am happy to send love and support to you.

Re: One step forward - two steps back. Discouraging news.

Hi Bob and Nancy:

I continue to be amazed by Jeff's strength and positive attitude. He sounds like such a good-hearted person. It breaks my heart to hear the news about the tumor growth. I know that this cancer responds to different chemo regimens in each persom. Dr. Sadeghi knows this cancer very well, and I'm sure he'll make an immediate change. We will pray for its effectiveness.

I had significant lymph node involvement, but still had a resection. We will continue to hope with you that further tests indicate that surgery is an option.

You are in our thoughts and prayers during this time. I hope that even with this news, you were able to have a good day together and that Jeff enjoyed the holiday.

Mark

Re: One step forward - two steps back. Discouraging news.

Bob and Nancy....I too am sorry to hear of the non-response to the current chemo regimen and hope with all my heart that the next treatment will be effective.  Hidden in our numerous postings you will find many discussion of “lazy" tumor vs. an aggressive tumor.  It appears that Jeff has the later.  Also based on what we have seen on this board, coughing often times accompanies lung metastases.
Also I would like to mention that our Ken's (Obrianfam5) lung tumors seem to appear periodically and his physician performs wedge surgery. For your convenience I am enclosing a link to his posting:
http://www.cholangiocarcinoma.org/punbb … 646#p66646
Please know that my fingers are crossed for Tuesday's visit to bring good news your and Jeff's way. 
Hugs,
Marion

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: One step forward - two steps back. Discouraging news.

Hello Bob And Nancy,

My name is Gerardo and I'm the person that works at the school that Annie works for up in Palos Verdes.My wife is Ginger and she is the one that got diagnosed with CC.

I'm so sorry to know about Jeff's results.What a great person Jeff is to still have the courage to go to work even after  fighting this terrible disease.You certainly have come to the right website,for knowledge and an enormous amount of support.Please know that You,Bob and Jeff are not alone.Please receive mine and Gingers love and support and most of all Prayers lots of Prayers.I will be calling you soon to see if we can meet each other since we are also going through the same emotions.We are only a few minutes away from each other.

  I will be posting an update on my wife Gingers medical condition soon.

   Lots of Love,Support And Prayers for You,Bob And Jeff.

Re: One step forward - two steps back. Discouraging news.

Hi Bob and Nancy,

I am sorry I just saw this post or I would have written sooner. I am very sorry to hear about the growth of Jeff's tumor. I know how that feels when you are so hopeful that treatments will work. Lauren had radioembolization called Y-90 this past May and we were so hopeful that all the small tumors would be gone on the one side. In like six weeks, she developed a new 3 x 4cm. tumor! They still aren't sure if it is a tumor or dead spot from radiation, but it is still there. We were all devastated. It was like the end of the world...for about a day. Then we picked ourselves up and decided on a new plan of attack. You have to stay positive and hopeful that a new treatment will do the trick. I know you will do that because you seem very positive and upbeat. Lauren has been on a few chemos that have shrunk her tumors and actually her large tumor is almost half its size and half dead. But chemo only works for so long and then a new one needs to be started. Jeff is such an amazing person. Bless his heart for going to work every day with a smile on his face. I am sending many prayers, love, and hugs to all of you. Please keep us posted on Jeff's progress.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: One step forward - two steps back. Discouraging news.

Bob & Nancy,

I too just read about Jeff's current issues.  I was sorry to hear about this set back.  Hoping this appointment will bring some better news.  Thinking of you all.

Love &  Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: One step forward - two steps back. Discouraging news.

Really Thinking you and especially of Jeff during this time. I expect the Dr will quickly change gears with chemo. Please keep us posted, Willow

Willow

Re: One step forward - two steps back. Discouraging news.

Hi Bob and Nancy,  So sorry to hear about the turn of events for Jeff. I would think that they will look at another chemo combination. Cisplatin and Gemcitabine seem to be the most popular. Jeff sounds amazing, getting himself to work everyday. If attitude was a cure he would be long cured, but it certainly helps to appreciate life so well. Sending lots of well wishes to Jeff and you two. Hugs. Nancy

Loving my husband from afar.

Re: One step forward - two steps back. Discouraging news.

Bob and Nancy,

I'm sending out prayers for Jeff and for you both as well. How fortunate to have discovered now that the regimen he was on was not working in order to try something else. Some of the other respondents seem to mention some other combinations, so there sound as if there are possibilities!  Hang in there and you'll all be in my thoughts and prayers.

God Bless,
Missing U