1

(154 replies, posted in General Discussion)

Tom, I think you and Ben have touched the hearts of many people fighting the good fight, or supporting those who are currently faced with the cc challenge. Enjoy every minute of your stay at home. Your decision took a lot of courage but I think it was definitely the right one. Peace...love...hope.
Melinda

2

(154 replies, posted in General Discussion)

Dear Tom and Ben, Just read through all 6 pages of your posts and will include you both on my prayer list. I know it is trite to say, "Stay strong", but you have so many people pulling for you. Sounds like you're getting good care. I agree with Lainy, although it is definitely your decision to attend the wedding, I would advise you to go. Ben's sis in law will, I'm sure, take great care of him and will let you know if there is anything to bring you home. Caregivers really do need some time away to recharge and be ready to face the next chapter.
Positive energy and healing thoughts to you both.
Melinda

3

(11 replies, posted in Introductions!)

Welcome to a great site. I have read many links and posts from members and they have given me not only invaluable knowledge, but hope. Glad you are getting a second opinion. My husband's cancer also spread to his liver and they were able to remove it and follow up with chemo. Hang in there. You are not alone. Best wishes for your dad.

Hi Darlene, I'm so sorry that you are going through all of this as many of us are. My husband had great blood work, cancer markers normal and found the tumor incidentally due to blood in the urine. His only symptom was an unexplained weight loss, no itching or pain.  We started with the surgeon as well and was told that he would either do the chemo first or the resection if he was able.  My husband was diagnosed in April 19 of this year and had a resection for his 8x6x3cm tumor on May 2. Dr. Singh at the City of Hope in Duarte, CA took on this very difficult surgery  which was followed by the gem/cis regimen similar to what you are going through. He had his three month scan on August 4, and is still cancer free. We will go for six months and then have another scan. I would agree with the posters up above to get a second opinion from a hospital that has extensive experience with cc.  I think doctors and hospitals that do these resections frequently are better able or more willing to take on difficult cases. I'm not saying that doing chemo to reduce the size of the tumor is the wrong way to go, I'm just saying that some doctors are more aggressive at tackling these tumors that turn your world upside down.
Best of luck to you with your chemo treatments and upcoming scan on the 2nd. Stay head of the nausea with the meds that are prescribed and allow your body the rest that it so desperately craves.
Hang in there.
God Bless,
Melinda

Best news possible for three month check up. We just saw Dr. Gangandeep Singh at City of Hope and he explained that the shadows on John's three month ct scan were surgical remnants, meaning scar tissue and fluid accumulation from his resection on May 2.  John remains cancer free and blood work is good. Continuing with Gem/Cis until Thanksgiving, for a total of six months. I guess we will truly have reason to celebrate at this Saturday's family party at our house. Thank you all for your positive energy, prayers and encouragement. they kept me going until our appointment today. Nothing but great things to say about Dr. Singh and City of Hope for giving John the benefit of the doubt and doing the resection when others might have said it was inoperable.
Melinda

What a beautiful poem Lainy thank you for that...you're right, I got nothing I wanted and everything I needed. I will try to focus on this as I head into the day and weeks ahead of me. Some of your message is so familiar to me, especially the scrambled eggs with cheese and then apologizing because they tasted salty or "off".  I will try again with the Carnation and bananas...I will keep trying and will be strong. Thankful that our son will be home from DC on Friday and a family get together is planned for the 23rd. Both things to look forward to. I have to just keep positive, while recognizing his need to vent and just "be".
Thank you all. We'll see how the day goes.
Melinda A.

Dear Marion, Melinda B, Mary Beth, Gavin and Lainy,
You don't know how much your posts have helped. We just returned from dinner which John picked at and the whole time he was just so discouraged. It's so hard to carry on a conversation when he is afraid and disappointed that his chemo brain is preventing him from doing the things that came so easily in the past. John was a school principal for 37 years, all at the same school for severely handicapped students. The children were with him from age 3-22 and he often offered the only hope and inspiration that these parents received in a public school setting. Now, with his health in jeopardy, he doesn't allow himself to look beyond this blip in his treatment course.
The chemo is indeed been cumulative as this, his fourth round, is manifesting itself with longer and more severe nausea and lack of appetite. I know to push water and meal replacement shakes, etc., but it's just so hard when you see your Rock of Gibraltar start to chip and erode.
I will call tomorrow and see about getting an earlier appointment with Dr. Singh. The 25th was a date established back in May after his surgery. I know that I will be able to work something in as his doctor is such a compassionate man.
We will get through this and if it's bad news, we will weather that storm as well. It just sucks that a man who lived his live in service to his beloved severely retarded and handicapped children, can not have more than 2 years into retirement before faced with such an aggressive and deadly cancer. I have read success stories on this site. I know that people are walking miracles and have made it. I guess I'm just finally having a moment, brought on by seeing such a strong and caring man in pain.
To Rob, Mary Beth, and all those facing the anxiety that accompanies the wait...my prayers are being sent up for you all. As always, thank you all for your support and God Bless.
Melinda A.

Definitely a bump in the road. I'm sorry that everything seems to be an obstacle right now but keep fighting Julie....

9

(4 replies, posted in General Discussion)

Stella, I am so sorry for your loss and for the work that you are required to do after your husband's passing. I can't even imagine how you were both caregiver and business owner.
I want to thank you for taking the time to write out your thoughts on getting through each day with a terminal loved one.  Each tip that you included is so valuable. Ones that you think would be just common sense, but are so necessary to review when going through so many different things. I know that I am making notes about many of your hints and pray that we will make it through this horrible diagnosis.
My heart and prayers go out to you, dear.
God Bless,
Melinda

10

(16 replies, posted in General Discussion)

Thanks Lainy and Gavin, You're right. After I posted my question I saw that Rob was in the same boat. Hopefully, we will both have great news soon. I appreciate your prompt responses and will try to get in to see Dr. Singh at City of Hope sooner than the 25th. We are confident that we are in good hands with him and his team, but waiting is for the birds.
God Bless you both for the work you do here. I will keep you posted.
Good luck to Rob too.
Melinda

11

(11 replies, posted in General Discussion)

I just posted a similar post regarding my husband's three month ct scan. He has been receiving chemo since he also had clean margin and no lymph node involvement. "Something" showed up and now we wait for the surgeon to order more tests, most likely a MRI. I certainly know what you are doing through. My thoughts are with you and your family as you play the waiting game as we are.
Melinda

In May, my 68 year old husband had a liver resection to remove a large tumor after his cc diagnosis. The surgery was a success and John had clear margins and lymph nodes were clear. We started gem/cis and he is almost half way through with his 6 month treatment plan. He receives both drugs each Wednesday, two out of three Wednesdays.
Last Monday John had his first ct scan after surgery and we were heartbroken to see that there is "something" on his left lobe. The oncologist didn't know what it is, just suspicious and surprised that a new tumor would grow during such an aggressive chemo regimen. We see his surgeon on August 25th if not before. I expect he will order a MRI for a better idea of what it is.
Any thoughts out there? Has anyone had a recurrence just three months after surgery, while on gem/cis?
As with everyone, the wait and see is the most worrisome. Any ideas are appreciated.

13

(19 replies, posted in General Discussion)

Peggy, I'm so sorry to hear what your brother has gone through, as well as your whole family. This is a horrible disease. I will include you all in my prayers.
Melinda

14

(7 replies, posted in Introductions!)

Thanks all for your helpful comments. I think we will try not taking as much Zofran and see how he tolerates the nausea. We were just taking it, along with Marinol, several times each day, but maybe if we pull that back a bit, he will have more energy during the day. I hear you loud and clearly about hydrating. He used to drink tons of water and crystal light, now just doesn't seem to be able to drink as much.  Getting fluids from Boost, coffee, shakes and some water.
One thing that he has increased is his intake of ice cream and sugary snacks. He says they are the only thing that really taste good. I have heard that sugar "feeds" cancer cells. His surgeon said that having some is ok but that he should eat what ever he can tolerate.
We're still learning, just finishing up round 1 out of 16.
Thanks for your info. It is much appreciated.
Melinda

Hi all, I've posted before about my husband who was diagnosed on April 19, 2014, had a resection on May 2, and started chemo on June 4th. We are still trying to determine what our new normal is. Surgery was tolerated well, with no lymph node involvement and clear margins obtained. John had 55% of his liver removed. He is in Gem/Cis and is tolerating it pretty well I think. Mild nausea or queasiness, tired and no appetite. We are keeping his weight steady after a loss of 20 pounds since the diagnoses. John is doing the two week on, third week off regimen but my question is whether it's normal to always get the Gem/Cis, for a total of 6 months, instead of Gem/Cis, then Gem alone then off week? Wondering what the implications are that he is receiving both. Also, after his second infusion, his white blood count was low so he is now on Neupogen. He had an infusion on Wednesday, injections on Thursday and Friday. I know that everyone is different, but is the bone pain really intense? He is just starting to feel achy around his ribs. Onc indicated that chemo effect is compounded each week, so we are bracing ourselves.
Last question: Next week is our bye week. Does the nausea significantly subside during the week that you don't have infusion? We were thinking of traveling to Vegas to see the grand kids if typically the off week is better.
With this being our first round of Gem/Cis, we just aren't sure what to expect. Are all rounds pretty much the same or does it keep compounding throughout the 6 months?
Thanks so much for your help in answering these questions. I tried the search feature, but couldn't get specific answers.
Appreciate your help.
Melinda
Still

I agree wholeheartedly. I read reviews of doctors and hospitals and read about Dr. Fong from Sloane Kettering coming to City of Hope in Duarte Ca. Although Dr. Fong did not perform my husband's resection, he was on the Tumor Bd that discussed the treatment plan. We were so lucky to get Dr. Singh to be our surgeon. There is no doubt that his skilled hands worked miracles on my husband, evidenced by the surgical notes that I just received today. Oh my, it was such a complicated surgery but Dr. Singh gave him the benefit of the doubt and performed it. He even repaired an umbilical hernia "since he was already in there". LOL  Even though the margins came back clear, Dr. Singh has ordered 6 months of gem/cis to attack with a "full court press" as he called it. We are so thankful for his team and the whole philosophy of City of Hope...they really do give you hope and every patient is a unique individual.  God Bless them all...surgeons, nurses, lab technicians, volunteers, one and all.

We found Dr. Singh and City of Hope after reading many posts here. Thank you all for sharing your journeys.
Melinda

I thought I would share with anyone that is interested that my husband tried the Canabis based, Marinol last night and it made all the difference for him in terms of increasing appetite. Since his liver resection on May 2, John has had little appetite and his taste buds were greatly affected, everything tasted salty. Maybe it was the placebo effect, but he took a pill last night before dinner, was feeling a bit loopy, or slightly high, but ate a great dinner, whistled on the way home, and was so much like his old self that, if for no other reason, the Marinol made him feel encouraged and like he could make it through the chemo that starts next Wednesday. We also got other drugs for nausea, but for now, the only thing we are worried about it building him up so that he will be stronger next week. One great dinner last night, one great breakfast today, a much better disposition.
I wanted to let people know in case they are worried about a serious lack of appetite or interested in Marinol.
Melinda

18

(11 replies, posted in General Discussion)

Hi all, Just got back from City of Hope where we found out that my husband will start chemo next Wednesday, for 6 months. He will be doing the gem/cis cocktail that many people talk about. They prescribed a few anti nausea drugs since he  currently has no appetite. Everything tastes salty to him. He will only be on 25mg of the Cisplatin, and I hear that this is the drug  that causes the side effects. I worry about him because he sleeps so much throughout the day, but the surgeon says that is normal as the liver is receiving all the nutrients in order to regenerate. Not that it matters, but does this chemo cocktail cause hair loss? I forgot to ask. They did do an audiological test today as they said that hearing loss is a side effect that they want to closely watch for. Getting the baseline today was great. City of Hope has been wonderful and are aggressive in fighting this horrible cancer. I'm going to go back now and search the boards for effects of chemo and what to expect. I know there are many threads. Just wasn't sure before today so I never ventured into them.
I really feel that you all are a wonderful safety net and although I don't know you and have only posted five times now, that you will be there to guide me through this journey and offer support and hope for as long as it takes.
Thank you so much for being here.
God Bless you all,
Melinda

19

(11 replies, posted in General Discussion)

Snowbird, Dr. Fong came to City of Hope on April 1 but is unable to perform actual surgeries until his license is approved. He was, however, in on the discussion with the Tumor Board and also had a 1:1 with Dr. Singh who performed my husband's surgery. Dr. Singh is currently the interim Chief of Surgery and Dr. Fong will take over shortly. We were very fortunate that COH  and Dr. Singh got things done STAT and as he said yesterday, using a "full court press".

20

(30 replies, posted in Introductions!)

Hello sdlinriverside. My husband was diagnosed at Riverside Medical Clinic and they immediately said that this was beyond their expertise so wanted to send him to UCI. We opted to go to City of Hope instead. He received the diagnosis on April 19 and he had surgery by the Chief of Surgery on May 2. City of Hope is incredible! Please look into going there if you can. Our doctor, Dr. Singh, is incredible and has the best bedside manner ever. Plus, Dr. Fong, from Sloane Kettering just came on board at COH. Every Thursday, a panel of 40 surgeons meet to discuss their cases. It's like 40 second opinions. With my husband, his CA19-9 was normal, he had no symptoms and this was caught incidentally. Large tumor and satellite tumor were removed on the 2nd, leaving 45% of his liver. Recuperation has been ok, but he doesn't drink enough water and had a couple bouts with dehydration, due to his insistence in walking at the Relay for Life, 15 days post surgery. What I'm trying to say is, although he had a quadruple bypass in the past, has two stents, diabetes and a stroke 1.5 years ago, they still decided to perform the resection surgery. They are aggressive in their treatment, and hopeful and positive in their outlook.
I wish you the best in this new life journey. Please don't settle for doctors who do not have the expertise to treat this very rare and complicated disease.
Melinda

21

(11 replies, posted in General Discussion)

Hello all, as many others have previously posted, I am glad that I found your site, yet wish it were under other terms. My husband was diagnosed with intrahepatic cc on April 18 and had 55% of his liver resected on May 2nd at City of Hope in Duarte, CA. The surgeon, hospital and staff have been nothing but confident, friendly and hopeful as we begin our journey. The primary tumor was about 8cm and they did find a satellite tumor when they went in to take a peak prior to surgery. The surgeon decided to perform the open surgery instead of closing him up. Margins and lymph nodes were clear and we will now begin a regimen of chemo next week. I have to tell you, this is scary stuff. I find myself going from hopeful to hopeless in his diagnosis and treatment. I know that many of you are long term survivors. God Bless you for sharing your stories of strength and winning your battle. My heart goes out to the families who have lost the battle with cc. I can only put my faith in the remarkable team of surgeons at COH, their positive attitudes and aggressive course of treatment. Not much more to say, but thank you all for sharing your hearts and your stories so that the rest of us can be informed and stay hopeful.
God Bless you all.