CC Family,

It is with great sadness that we report our beloved son, Jeff, passed away at home in the evening on 9/25/13. He was surrounded by our family and friends.

Some of you are familiar with our story and others are not. Our wonderful Jeff was diagnosed with CC about 14 months ago. Because Jeff had developmental disabilities and high functioning autism, we decided not to tell him. We knew that this would only frighten and worry him. We did not want to place that burden on him during his battle. Amazingly, he was able to carry on with his normal routine up until the end. He continued working up until a couple of weeks ago, because he absolutely loved his job and his friends at work. He continued his Saturday morning bowling up until a couple of months ago and even then he wanted to go to watch and support his friends.

We are grateful to the many wonderful, compassionate and caring doctors, nurses and medical professionals that assisted us with Jeff’s care. We are very thankful that we have two top-notch medical facilities in USC and UCLA that are close to us. We were able to utilize both of these medical centers during the course of his treatment. We are confident that between our local physicians and these two great medical centers we were able to get Jeff the very best medical treatment possible.

He was blessed with a high pain tolerance and did not take narcotic pain meds until about 2 days prior. He just never would complain. If people would ask him how he was doing, he would simply say “I am blessed”. We are very thankful that God chose us to be his earthly parents.
We are humbled by the outpouring of love and support from his work family at Mattel as well as our friends and family. We simply could not get through this without our loving family and friends.

During Jeff’s last 14 months, we were able to enjoy many things together. We took him to Las Vegas, Minnesota three times and Hawaii. We were able to enjoy a Minnesota Vikings game, a Laker game and get Jeff’s picture with Kobe. We were able to enjoy a Stanford football game with field passes and get his picture with the cheerleaders of both teams as well as some of the football players. We will have these wonderful memories to cherish for the rest of our lives.

The CC Family was such an important part of our lives following Jeff’s diagnosis. We are deeply grateful for the friendship and support, encouragement and prayers, well-wishes and day to day practical helpful information that our CC Family has provided. I wish I would have posted more. But even when we weren’t posting, we were reading about and praying for our CC Family members. We will be forever thankful.

This week has been a very busy one for us, making the arrangements. The services for our Jeffrey will be tomorrow (Friday, 10/4/13). His obituary can be found online at the website for White & Day Mortuary or at LAfuneral.com.

Bob & Nancy McCandless
(jeff’smom&dad)

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(25 replies, posted in General Discussion)

We are looking forward to reading your post in the Good News column on Monday. Our thoughts and prayers are with you, Kris.

Bob and Nancy
Jeff'smom&dad

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(8 replies, posted in General Discussion)

Hello CC Family,
We haven't posted on Jeff in a while. His last PET/CT in the end of June was bad. Disease has progressed & Taxol was ineffective for Jeff. Our ONC put him on Tarceva. He has developed the bad facial rash that is typical for this drug.

He has lost a lot of weight (& didn't have much to lose to start with). Get's pretty fatigued. Still does not seem to need pain meds. Not very much ambulation. Most waking hours spent in chair or wheelchair. He has just started to develop bed sores. Nancy and I are trying to manage this new challenge.

He still wants to go in to work & is able to get in most weekdays or 1 to 3 hours. Again his employer has been unbelievably supportive throughout this process. Jeff continues to amaze us with his positive attitude.

Next PET/CT in a few weeks hope & pray for better news.

Please keep our Jeff in your thoughts & prayers along with everyone else in this very special CC Family.

God Bless.

Bob & Nancy
jeff'smom&dad

Mark,
We are so happy to read about your great news! It is very encouraging for us to hear that the "one-two punch" of FOLFOX & radiation has been effective. Dr. Lenz sure knows his stuff.

Hope to here more good news in the future.

Jeff and I were so happy to meet you both when Dr. Lenz introduced us! I hope we were not intrusive.

God Bless You & Your Family,
Bob & Nancy
Jeff'smom&dad

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(18 replies, posted in General Discussion)

Tiffany,

You are truly blessed!  We will continue to keep you and your family in our prayers and will be waiting to hear about more of God's miracles in your life.

Blessings,
Bob and Nancy

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(3 replies, posted in General Discussion)

Dear Christine,
Everyone is different. Some people may have favorable results on one chemo regime while others may not. In our case, our son tolerated Taxol very well with few side effects, except for hair loss. Unfortunately, it was not very effective in slowing down his disease process. Then again, neither was cis - gem or oxal & xeloda. Again everyone is different & you may do well with Taxol. We (as most others on this cite) are firm believers in second opinions. Good luck in your journey. God Bless.

Bob & Nancy
Jeff'smom&dad

Dear Matt & Lisa,
We are sorry that you have had to become part of the CC Family. After our son's CC diagnosis, finding the CC Foundation & Family was the best thing to happen to us.

We are happy that liver resection is still a possibility for Lisa. We are also glad that she has been able to tolerate chemo.

Dr. Selby is an excellent physician and surgeon and a caring compassionate man. Our experience with Dr. Selby was a very positive one. We took our son to Dr. Selby who attempted a liver resection when other doctors would not.

Stay strong and keep turning over those stones. God Bless.

Bob & Nancy
jeff'smom&dad

Hi CC Family,
Over the last week, Jeff has been more nauseous than usual  and has had trouble with constipation. Zofran did not seem to help at all. We called the clinic and learned that our ONC was out of town for a few days. The NP or PA suggested that we try Reglan to help with the nausea and constipation. When we went to the pharmacy to pick it up, the pharmacist refused to fill it because of an adverse reaction potential with one of his other meds (Abilify). We called the clinic & spoke with a different ONC who knew nothing about Jeff or his case but suggested that we take him to the ER because it sounded like he was pretty sick. We did. 

On Thursday in the ER at our local hospital, they ran a CT scan and discovered an intestinal blockage in the duodenum area. He was hospitalized that night and surgery was scheduled for Friday. He had to be transferred to another local hospital for the surgery and then transferred back to the first one following the surgery.

The GI docs were not sure that they would be able to place a duodenal stint until they actually went in with endoscopy. Fortunately they were able to place the stint and it did open up the pipe which was an answer to our prayers. Alternative treatment options were not good, if they were unable to place the stint.

Jeff's disease has progressed to the point where tumors on the outside were compressing the digestive track in the area of the duodenum which was what was causing the occlusion.

Since Jeff was in the hospital on Friday when our next PET/CT scan was scheduled up at UCLA, we could not have that test done. Unfortunately, we found out enough with the CT scan to know that we are in some trouble here.

He was discharged from the hospital this afternoon because he was tolerating the liquid diet (and then soft food lunch this afternoon) well enough to go home. From my perspective, being healthy enough  for discharge was the best Father's Day Gift.

We plan to follow up with our ONC up at UCLA next week as well as the local GI docs who did the procedure. For now, he continues with the soft foods diet - mostly soups and pureed stuff. Does anyone have menu suggestions?

As is typical for Jeff, he charmed the nurses and medical staff in both hospitals. He had a steady stream of family & friends come visit for which we are most grateful. 

Please keep our Jeff in your thoughts and prayers. We are hoping for a better week.

Bob & Nancy
jeff'smom&dad

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(9 replies, posted in General Discussion)

Hi CC Family,
Since our last post, Jeff has had 4 chemo infusions of Taxol at 3 week intervals. His next PET/CT scan is set for this Friday. We are hoping and praying for some favorable test results.

In mid-May, we were blessed to be able to take Jeff to Hawaii. He used his wheelchair (which he has named "hot wheels") most of the time. While he wasn't able to get up and do the hula, he was able to enjoy an occassional mai tai with his family and friends. He had a wonderful time and we have treasured memories of our time with Jeff.

His last infusion was on 5/30 and at that time, his WBC count was elevated and his Calcium levels were way way up. He needed extra hydration and a calcium bonding agent called Zometa biophosphate. When we went back for another blood draw on 6/3, his blood levels were back to normal.

Nancy and I have seen a gradual increase in Jeff's symptoms with fatigue, nausea and some pain. Still, he has an amazing positive attitude. He is continuing to go to work, most days, but isn't able to get around as easily.

Jeff is an amazing man of Faith. Whenever he sees or hears of someone not feeling well, he always says a little prayer for them. It is just touching to see this young developmentally disabled young man, who has lost most of his hair from chemo, nauseous, fatigued and in pain, sitting in his wheelchair praying for others and being concerned for others well-being.

Bob & Nancy
jeff'smom&dad

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(167 replies, posted in General Discussion)

Dear Pam,
We are so deeply saddened to hear about Lauren's passing. There are no words. Please accept our deepest sympathy. Please know that our thoughts and prayers are with you and your family.

Bob & Nancy
Jeff's Mom & Dad

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(11 replies, posted in General Discussion)

Mark,
Nancy checks the site daily and shares the posts with me. It has been a while since we've seen a post from you and we were wondering how you were doing. We are so sorry to learn about your bad news.

We know you are getting the best medical treatment available.  Both Dr. Lenz and Taline were so compassionate and caring with Jeff during our visit to see them. It is truely a blessing to have such great physicians and medical treatment.

You have been an inspiration and comfort to us in our CC journey with Jeff. We want to thank you and we want to let you know that you have touched our lives.

You are absolutely right when you say: "No matter the ultimate outcome, the cancer can't beat me." The cancer may invade this body part or that body part but it CANNOT attack your strong spirit! You indicated that you hope that you can live this stage of your life with dignity and integrity. Of this, we have no doubt.

We continue to pray for you and your family. We continue to pray for your wisdom and strength in face of adversity. We feel your wisdom and strength in the face of adversity, even if it is just through a post.

Stay strong Mark.

Bob & Nancy
Jeff's Mom & Dad

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(42 replies, posted in General Discussion)

Pam and Lauren,

We are soooo happy that you are now able to have surgery, prayers are being answered.  You have so much life to look forward to with your wedding around the corner and a wonderful family to support you.  We will be praying for a speedy recovery. 

Bob and Nancy

Hello CC Family,
Completed 7th infusion of Cis/gem on 2/25. PET scan on 3/5 showed significant progression. Primary liver tumor up to 13.7 x 16.9 cm. was 11.4x 12.3 on 1/15.

Second onc opinion @ USC with Dr. Heinz Lenz went well. Got some good suggestions, but basically in agreement with Tx todate. Loved office staff, NP Taline & Dr. Lenz.

Port placement today. Chemo with Taxol on next Monday. Liver biopsy on tuesday.

Any one familiar with Taxol chemo? Liver biopsy to check for HER 2. Hope is to supplement Taxol with chemo for HER 2, depending on biopsy results. Seems unconventional. But we don't want to wait for results for 3 weeks without any treatment, so onc is giving taxol a try.

On personal side, Jeff continues to work 75% of full time. (this is therapeutic for jeff.) Swelling feet & ankles. Nausea @ night 3-4 times per week. Distended abdomen, hard stomach. At last chemo, IV moved and Jeff got some cis infusion into muscle tissue of right arm. Sore and red but he does not complain. Ever. He is very fatigued.

Also on personal note, his uncle arranged for Laker game. Through series of unique unexplainable series of events, he met one of his heros, Kobe, who signed his hat! He is still smiling. Both his uncle and I think Jeff is the hero.
Also found out he will go to state bowling tournament with special Olympics / ARC in Sacramento on 5/4. He is exstatic.jeff has taught me that it is all about what you choose to focus on.

Anyway, input & info on Taxol would be appreciated. Please keep Jeff in your thoughts and prayers.

Bob & Nancy
Jeff's mom & dad

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(6 replies, posted in General Discussion)

Gerardo,
Our thoughts and prayers are with you and your family on this day.
God Bless You.
Bob & Nancy
Jeff's Mom &Dad

Hi CC Family,
We haven't posted an update on Jeffrey since the aborted liver resection. Since then, we have continued with cis/gem through our ONC at UCLA. He is continuing to get more fatigued. We are scaling back some of his regular activities. He continues to work at the job he loves so much but is now down to between half and three quarters time. He continues to bowl through Special Olympics on Saturdays. We are using a wheelchair to helphim when we are doing things that require alot of walking. He still has his infectiously positive outlook and attitude.

We have a second opinion set with Dr. Lenz at USC to explore any possible alternative options.

Question #1: He is due for another stint replacement in his bile duct. That doc has suggested changing to a more permanent metallic stint rather than the plastic ones which need to be replaced about every 3 months. How might this change affect his chemo regime and or other forms of alternative therapies & diagnostic tests?

Question #2: Thin clay colored stools...what is that about? Is that from the CC or the chemo? Last upper/lower GI was back in 10/12 and was clean.

Thanks for your time & consideration.

Please keep Jeff in your prayers. Along with many of you, we continue to pray for a miracle.

We love you guys.

Bob & Nancy
Jeff's Mom & Dad

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(17 replies, posted in General Discussion)

Hi Julie,
We would just echo what Mark said. In fact, Mark provided us with information about USC and Dr. Rick Selby. We share Mark's view that USC, in general, took a more aggressive approach to surgery.

Our ONC is at UCLA (Dr. Sadeghi). We have had a good experience with both Dr. Sadeghi and his office staff. Our son has been treated at UCLA for years for unrelated urological issues and extensive urological surgery. It was through that connection that we were referred upstairs to Dr. Sammy Saab and then to Dr. Busuttil. Both liver surgeons were very nice and as Mark advised, they are world renown. In our son's case, they declined surgery. We took Mark's advice and consulted with Dr. Selby at USC. He was wonderful and did proceed with surgery.

As you know, this is a very aggressive disease. This is certainly true with our son's situation. In the relatively sort period of time between the initial diagnosis, diagnostic testing and actual performatnce of the surgery, the disease had spread to the point where the liver resection could not be completed, so the surgery was terminated without the resection. We went from hope and elation to disappointment.

However, most importantly, Dr. Selby at USC gave our son the best chance of becomming disease free by agreeing to attempt the surgery. We are very grateful to Dr. Selby who attempted the surgery when others would not.

We did not change our ONC to USC. We were and are happy with Dr. Sadeghi at UCLA. However since our son's treatment options now appear to be limited to chemo, we are probably going to look for additional opinions, starting with USC.

As Mark said, you are very lucky to live in an area where we have not one, but two wonderful medical institutions with expertise in the treatment of cholangiocarcinoma.

Good Luck and God Bless You, your family and especially your father.

Bob & Nancy
(Jeff's Mom & Dad)

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(13 replies, posted in General Discussion)

Dear Gerardo,
We know that there is nothing that we can say at this time to ease your pain. We wish there was. Nancy and I are so very sorry for the loss of your loving wife, Ginger. You have both been so supportive for our family in your words, hopes and prayers and we are so grateful to both of you for that.

We know from our discussions with Annie that Ginger was surrounded by the love of students, friends and faculty at the school and that she will be missed by all.

God has blessed both of you with each other and many fond and happy memories. It is our hope and prayer that those happy and loving memories will help ease your pain.  It is also our hope and prayer that your Faith and knowing that Ginger is with the Lord in a place without pain, without suffering, and without CC ,will help ease your pain.

Gerardo, again, we are so so sorry. Please accept our deepest sympathy.

Love,

Bob & Nancy McCandless
(Jeff's Mom & Dad)

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(5 replies, posted in Introductions!)

Dear Let's Live,
I am so glad that you found the CC Family and so sorry that you had to look for us.

Nancy and I are relatively new at this also. Our CC saga started with our son who was diagnosed in 8/12. We have consulted and treated with many wonderful, caring and skilled physicians at two well known institutions out here in California. However, by far, the best thing that has happened to us since this journey began was finding the CC Family. In fact, we found some of our physicians through other CC family members and their gift of sharing. I cannot imagine a more loving, caring and supportive group of people.

You will see this as your journey continues and as you continue to explore this website and read these very personal stories. You will find happy stories ans sad stories, successes and some disappointments all of which truely mirror the hills and valleys of this disease. You will find a wealth of information about the disease and the treatment.

Our thoughts and prayers are with you. Stay strong and be brave.

God Bless You.

Bob & Nancy
Jeff's Mom & Dad

Dear Mark, Let me start by just saying thank you. I cannot tell you how much your posts have meant to us. We are deeply deeply grateful. Your information, guidance and support lead us to Dr. Selby and our best chance against this (explitive deleted) thing. We love you and thank you. You are a light in our lives.

We are so sorry to hear about the bad news.There is never a good time for this, but around holiday season, it's just plain worse.

It is wonderful to see the love and support for you by the other members of our CC family. PCL1029 has some great information and encouragement with a base of first hand experience that may be helpful for you.

We know you are in good hands with Dr. Selby and his team at USC Keck Med Center and that's a great place to start. Obviously, he knows your liver better than anyone. He has actually SEEN it!

Our hope and prayer is for your healing and that your surgeons and doctors will be able to provide the best  treatment plan possible, be it surgery or RFA or whatever.

God Bless You, Mark. Stay strong and positive. Thank you.

Bob & Nancy
Jeff's Mom & Dad

Dear CC Family,
Jeff's liver resection surgery was scheduled for 12/20 (not 12/22 as I mistakenly posted earlier) with Dr. Rick Selby at USC Keck Medical Center.

Unfortunately, when Dr. Selby opened him up for the liver resection, he discovered that the tumor had spread, dramatically, since the PET/CT scan. He was closed up without the liver resection. It would appear that surgery is no longer an option for Jeff.

He will start another round of chemo, probably after the first of the year with Dr. Sadeghi at UCLA Medical Center.

We are very thankful for all of our wonderful doctors, but especially for Dr. Selby and his team who attempted surgery when others would not. The extreme aggressiveness of this tumor and the extent to which it has spread in such a short period of time is something that none of us expected.

I really have no other words at this time. I will post later.

Thank you all for your support and for being there for us.

Bob & Nancy
Jeff's Mom & Dad

Hello CC Family,

Since our last post on 11/22/12, the familiar CC roller coaster has continued.

Jeff had a lymph node biopsy (ebus endobrachial ultrasound and mediastynoscopy). The doctors were pretty sure that the lymph nodes lite up on the PET Scan were positive. However, we caught our first break. The pathology report came back showing that the lymph nodes were negative!

While we were waiting for the path reports from the biopsy, everyone seemed so sure that the results would be positive that we were desperate to change the chemo regime and get him a new chemo cocktail ASAP (since the liver tumor had doubled in size on the prior chemo regime).

Our ONC  at UCLA (Dr. Sadeghi) was extremely cooperative and set us up for a third round of chemo, but it was the first with a new cocktail - Gemzar and Cisplatin. That was on Monday and on Wednesday of that week, we discovered the good news that the lymph nodes were not yet diseased.

Liver resection surgery has been scheduled at USC Keck Medical Center for 12/22. Our liver surgeon, Dr. Selby wanted him off of chemo for at least two weeks prior to the surgery but also wanted the surgery to be scheduled sooner rather than later, so it looks like Christmas in the hospital. Again, this is probably the best Christmas gift ever!

After a period of recover following the liver surgery, the plan is that Jeff will be scheduled for a lung surgery to remove the tumor in his left lung. This will also be done at USC.

Simply put, our prayers have been answered. Thank you everyone for your support, prayers, kind hopeful thoughts, encouragement and "good vibrations". We want to keep this positiveness moving through our CC Family, so we are doing our best to send all of this right back to all of you. May you all receive good news like this.

Bob & Nancy
Jeff's Mom & Dad

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)

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(13 replies, posted in Introductions!)

Dear Greynosa,
I was happy to read your post yesterday, we have a mutual friend, Annie, she is my sister-in-law and a teacher at the school where you work. I was talking to her yesterday about you and Ginger and come home to find your post...small world! She was going to track you down at work today and ask you to call us.  We went to USC on Friday for a second opinion and was very happy with the Drs. there(we are having trt at UCLA now). Dr Selby gave us a ray of hope regarding surgery for our son Jeff, we know its a long shot, but any shot is good. Please feel free to call us (310)370-1317, know that we are praying for you and Ginger and for all the wonderful people on this site.  Everyone here is such a blessing to our family. Take care and hope to here from you soon.

Nancy

Jeff has continued his regime of chemo with Oxaliplatin and Xeloda. He is having some of the expected side-effects, but so far, he has continued to work and continues to maintain his normal routine.

For those of you that encouraged us to get a second opinion (and especially to Mark) we cannot thank you enough. For those of you considering a second opinion, we hope you can benefit from our experience and we would strongly encourage you to consider obtaining a second opinion.

In our case, one of CCF's fellow members, Mark, recommended Dr. Rick Selby at USC as a possible second opinion regarding surgery for our son, Jeff. We had our evaluation with Dr. Selby on Friday.

We had a totally positive experience. In Jeff's situation, Dr. Selby was able to provide us with some additional options concerning possible surgery, but most importantly, - he provided us with a ray of hope. Those of you going through this CC experience KNOW what a special gift such a ray of hope can be.

Dr. Selby and his team will be running an additional round of diagnostic testing including a PET Scan and probably another MRCP procedure to take another closer look at the bile duct. Of course, the hope and prayer is that we do not find any previously unknown tumors. (We know that Jeff has tumors in his bile duct, liver and left lung.)

Additionally, Dr. Selby hopes to get a better idea as to just exactly how the bile duct tumor is situated. IF things go well with the testing, then surgery IS a viable option for Jeff. The scheduling for the additional testing will begin on Monday and hopefully, within a couple of weeks, we will be in a position of being able to obtain surgery.

For our son Jeff, please hope and pray for clean scans and diagnostic testing results that make surgery a viable option for him.

We really really liked Dr. Selby! Thank you Mark for your recommendation.

As always, our thoughts and prayers continue to be with our new CCF family.

With renewed hope...
Bob & Nancy (Jeff's Mom & Dad)

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(11 replies, posted in General Discussion)

Hi Lynn,
In our situation with Jeff, he started having bad night sweats about twice a week. However, for Jeff, this started after CC diagnosis but prior to treatment. He is on chemo and has not had radiation therapy. We suspect it may be somehow related to the cancer.

Bob & Nancy
(Jeff's Mom & Dad)