malinger2
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My husband and I drive an hour to get to City of Hope for infusion and care from our wonderful doctors. Yes, we have Loma Linda, a wonderful hospital, close by but opted to go where they treat many more cases of cc. We tend to make a day of it, often getting a nice dinner after while the steroids he receive improve his appetite. Some of our best conversations occur during our drive to and from. I guess I would be frustrated as well, but my suggestion is to go where you feel comfortable with your doctor and where they have much more experience treating this monster of a cancer. Staying positive is critical to getting through this journey…go where your heart tells you to go.
Melinda AMy husband has diabetes, has had a quadruple bypass and a year before his diagnosis, and had a stent put in the “widow maker” vein in his heart a year before his diagnosis. He was on Crestor for many years but discontinued because of side effects (neuropathy). Put back on prior to his cc diagnosis. John had no symptoms other than weight loss, but he was experiencing major stress/depression since he retired two years ago. He was experiencing some forgetfulness/memory issues prior to retiring…thought it was due to the anesthesia from surgery. I know that stress is deadly to your body and often wonder if that compromised his immune system.
He cardiologist told him last month that he has certainly beaten the odds with all the major traumas his body has been through. Praying that his luck holds out and that I am still giving you updates for many years.
Melinda AMelinda,
You are certainly an inspiration to the rest of us just beginning our journeys. Congratulations for your healthy immune system and your continued success in fighting this ugly disease.
Please keep posting…you give me such hope.
God Bless,
Melinda AI feel the same way about this Christmas…receiving a great scan is the best incentive to celebrate and give thanks. When we saw our surgeon on Monday, John gave him a card with a gift card in it, just to thank him for his outstanding work and support over the months. I came home from shopping this morning and John said that his surgeon called him to thank HIM for making his day. John thought at first there was bad news to be delivered, but Dr. Singh just wanted John to know how touched he was by John’s inscription. Wow is all I can say.
I just found out that both of our kids will make it home for Christmas (from Vegas and DC) and that all my 3 siblings will also be with us to celebrate. I too feel like celebrating and decorating the house to welcome our two precious grand kids and family members. Going out to buy our tree and some poinsettias right now.
Yes, let’s keep in touch.
Merriest of Christmases,
Melinda AHi Julie. We met with John’s surgeon yesterday and he indicated that for the first year, he wants to do a CT scan every three months. The second year, her will extend it to every four months, and after that every 6 months. When I told him that our oncologist thought that scans could be done further apart and just rely on lab work, he said that John (and you) are among the 20% that had no indication from tumor markers or elevated levels on blood work prior to diagnosis, and that we needed to remind our oncologist about that should he want to just go by lab results.
We are lucky that Dr. Singh said that he likes to personally stay in touch with his surgical patients for one year following resections and chemo. Most surgeons turn their patients over to the oncologist who rely on the radiologists reports following a ct scan. He said that since he was “in there”, he knows first hand what shadows might be or where scar tissue is. We love Dr. Singh at City of Hope and trust his judgement immensely.
John’s liver has fully regrown and he has a clean bill of health until February 23 when the next scan is complete. With regards to a MRI vs CT Scan with contrast, Dr. Singh indicated that with this type of cancer, the ct scan with contrast gives a more complete view of microscopic changes, unlike other scans or images.
After drinking a ton of water since his last creatinine test, John’s levels were back within normal range and the thinking is that he just let himself get dehydrated prior to the scan on Nov. 24.
So, overall, good news for this visit and peace of mind for the holidays, where my entire family will gather from all parts of the country. First time in many years that we are going to be all together.
Continued best wishes to you…keep singing my favorite Christmas hymn at every opportunity. I love Silent Night as even during the depths of my mom’s Alzheimers, she recognized and tried to sing along with this one song at mass. Just beautiful.
God Bless…
Melinda AHi Julie, I have been following you as your story and my husbands are eerily similar. Diagnosed with stage 4 in April, resection in May and finished up with six months of gem/Cis on November 5. Clear margins after surgery. Had a ct scan on Nov 24 but couldn’t use contrast as creatinine was 1.66. Scan looked clear but will redo it in 3 months. We saw the oncologist last Wednesday, the 26, and he said that John might have been dehydrated to cause bad kidney functioning level. He has been drinking a ton if fluids since then as we have an appt on Monday, with our surgeon and he will recheck labs, especially the creatinine. We will be referred to a nephrologist if kidney levels are still high, knowing that cisplatin is so hard on the kidneys.
Anyway, their original plan was to do a ct every 6 months as well, with lab work each month. This made me nervous since his lab work was all normal prior to incidental finding of cc tumor. I will ask about having a ct sooner as well but not sure that they will ok it. At least we will have one more in 3 months, using contrast, to show closer detail which they couldn’t get this time.
I’ll keep you posted tho. We have such similar stories, it’s uncanny. I stressed out prior to the scan too so I know how you feel. Scanxiety is very real and alive in so cal.
What were some of the other burning questions on your list. Maybe I can ask Dr. Singh at City of Hope and see what he says, since we’re so similar.
Glad that your scan was clear too. Keep drinking water. 1.3 isn’t too far above normal. Hopefully you can just hydrate more before your next labs.
Hope my post is mostly legible. Writing it in a car on my iPhone, and wanted to respond to you as soon as I could.
God Bless you, and all the posters, in this journey.
Melinda APorter, I totally agree with your questions and what you are feeling after resection and chemo. My husband has just finished chemo after his surgery and feels exactly the same way. He is emotionally lost without his weekly trips to City of Hope, searching for support and information about his new normal. When does taste come back? chemo brain leave? food? CT scans more often or rely on lab work when his labs were normal pre diagnosis. Odds of cc returning, etc….
Thanks for verbalizing what we have been scratching our heads over for the past few weeks.
MelindaGreat news Lainy. You have every right to celebrate by dancing till the cows come home. You are such an inspiration to all of us on here and I couldn’t be happier that you are cancer free. Here’s to another 5.
Melinda AHi Michelle, Welcome to the site. You will find that the folks on here are incredibly supportive and have a wealth of information from their own experiences or from the experiences of a loved one. As Lainy said, do not get caught up in the stage that you have been given. Every one is different and you should not place yourself into any statistic based on that.
My advice to you is to research on this site and other reputable sites on the web. Keep as positive an attitude as you can…it’s hugely important. Keep busy. Allow people to help you and pray for you if that is your belief. Be good to yourself. Some days will be easier than others. Don’t get down on yourself if you don’t feel like eating or doing much of anything. It’s your life…
God Bless you Michelle. Please keep us posted.
Melinda A.Serena, I don’t think you insulted your doctors at all when talking about getting a second opinion. I think that is such a standard practice these days that doctors probably expect it. We did not opt for a second opinion because when we found out how many physicians were discussing John’s case, and came to consensus that surgery was the course of action, we felt this was as if we had 46 second opinions. I think if you were to ask Dr. Selby if they have a Chinese speaking oncologist at USC, he could point you in the right direction. I know that there are some at COH, but am not sure about our specific doc. Most hospitals are so willing to go the extra mile for patients and their families…ask about family services, translation services (not over the phone) and how they can best meet your needs. I’m sure that there are many volunteers that you could get to know, some many speak Chinese. We have been at COH since April and are so impressed at how they do everything imaginable to help you in your difficult journey. Ask about it at USC, and about their tumor board. They have a wonderful program. I am sure that this will bring your mom more peace.
MelindaSerena, I am not sure if Dr. Chung at City of Hope speaks Chinese or Mandarin. I’m sure that you could find out. My question to you is why you would have an outside oncologist (one from COH) when you are thrilled with your surgeon at USC? I heard great things about Dr. Selby as well and I know that they have wonderful oncologists on board.
At City of Hope, and probably at most cancer research hospitals, each patient’s case is brought before a tumor board consisting, in part, of surgeons, oncologists, radiologists, etc. Each week, they discuss the best course of action amongst the 46 doctors on the board and that is the course of treatment that is followed. City of Hope was very fortunate to have Dr. Yuman Fong, from Sloan Kettering in NY, come to Duarte to be Chair of Surgery. He is internationally renowned and advised on my husband’s case which is being handled by surgeon, Dr. Singh, who also is wonderful.
Since Dr. Selby is also held in high regard, and USC also brings cases before their tumor board, would you not want part of his team to be treating your mom, instead of splitting two facilities? I am new to all this and not sure what the benefit would be other than proximity of the hospital and comfort level with a oncologist who may speak your mom’s primary language. I just know that I find great peace of mind knowing that if there is a question, our oncologist can pick up the phone or run downstairs to ask his colleagues what their thoughts are.Hercules, you are such an inspiration and your advise is not falling on deaf ears. My husband is almost done with chemo, after a successful resection. My first thought was that of fear, knowing that the chemo safety net was being removed. You are so right…don’t wait around wondering if the cancer will come back. I will look into taking those trips that we never made, visiting the kids, traveling to the ends of the world and back. Bless you for your work with people with cc. Congratulations on your 9 years. You should indeed be shouting from the mountain tops.
God Bless,
Melinda AHi Porter, my husband had a CT scan three months after resection and scan showed both a shadow and a spot. Oncologist said he’d be surprised if they were cancerous since John was on gem/cis. Saw the surgeon and he said that the shadow was fluid from the surgery and the spot was scar tissue from where he had removed a spot on his liver. The good advice we received from the Onc, was not to worry about it intil we saw the surgeon. He was in there and had detailed notes on what he saw during surgery….when he saw the CT scan, he knew exactly where it was and that it was scar tissue. I had myself all worked up for nothing.
Melinda ASerena, Yes we are at City of Hope. Our surgeon was Dr. Gagandeep Singh and our oncologist is Dr. Chung. We love the hospital and the aggressive treatment that they provide while still being hopeful and individual. Found out yesterday that we will be done with chemo on November 5th instead of the 25 as we originally thought. It’s been six months and my husband was starting to get pretty discouraged. This small change in end dates was enough to encourage him that the end of the side effects are hopefully nearby. CT scan in November and that will become our new baseline. So thankful that we only have three more infusions left.
Best of luck,
Melinda
