robjk
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Hi Serena,
My husband Rob had a resection in May with clean margins and negative lymph nodes . We were in the same position you and your mom are. My husband also was concerned about all of the side effects. The oncologist left the decision totally up to us and we decided not to take chemo. Within less than three months he started to have pain in his shoulders and not feeling just right. His repeat scan ended up showing several questionable areas but the surgeon in Miami said he didn’t know what it was and that the scan was done to close to surgery and to repeat the scan in a month. He was not concerned about the shoulder pain. Well, within less than a month, Rob started to show increased symptoms of pain and ascites and ended up in the hospital for three days. While he was there he had a liver biopsy and it came back positive: this time with lymph node involvement. The cancer is now mets all over his liver . He is now taking chemo!
The decision of whether to take chemo is a personal one and every situation is different. Some people never have a recurrence and some go for years. You just never know. In hindsight we wish we would have chosen to take chemo post resection!!
Sincerely,
Mary Beth
Hello again from Rob’s wife. Rob has had 2 rounds of chemo so far and we can already see improvement in his symptoms. It surely has not been easy for him or any of our family watching him go through this!! We are keeping the faith and feeling all of the love and prayers from all of you! He hasn’t had a lot of energy but today he perked up and there is a big improvement in his ascites and swelling of his lower extremities. Please keep us in your prayers. We are praying for a miracle!!
This is Rob’s wife Mary Beth. I wanted to update everyone on Rob’s scan results. We were told by the Miami Surgeon to wait for 1 month and then repeat Rob’s scan but Rob began to develop symptoms before the month was up. On Labor Day weekend Rob developed, ascites, pain, fatigue, and shortness of breath. He ended up being admitted to the hospital for 3 days and had a complete work up. He also had to have his abdomen drained 3 times.
On Friday Sept 5th, our youngest daughter’s 17th Birthday, we got the most devastating news in our lives. I was in Trader Joe’s with a shopping cart full of groceries and got a phone call that Rob’s biopsy results were positive and that the cancer was mets like willd fire all over Rob’s liver with node involvement! I don’t even know how I was able to drive home!
We ended up getting a second opinion from another oncologist who has given us some hope. He feels that Rob’s cancer is so active and hyper metabolic that the chemo will be able to attack it! Rob had his first chemo on Sept 12th which is Gemzar/ Oxaliplatin. He has had a rough week but seems better and has a great appetite! The ascites has lessened since the first chemo.
Please keep Rob, Me, and our 3 beautiful children in your prayers. God has been sending us blessings each day of overwhelming support from family , friends, co workers etc. My sister has been such a blessing also. She has been here for 2 weeks helping with everything! We are keeping the faith and praying for a miracle!
With Love
Mary Beth Karish
I should let the wife reply, she is so much better at this.
After having my 3 month scan reviewed by the radiologist, 2 general surgeons, an oncologist, and my surgical oncologist. No one has seen anything like this before and they don’t necessarily agree with the radiologist report or know what it is, “numerous small ring-enhancing lesion throughout the liver”. One common thought is, if the numerous lesions were cancer, I would be really sick and I wouldn’t be gaining weight (ugh), riding my bike 4 miles (last night), and working everyday. They seem to think a 3 month scan is too early after major surgery and the spots could be some type of trauma from the resection or related to the surgery. Also, everyone said this is way too early and aggressive for choangiocarcinoma?
We are going to do a CT scan next time in September or sooner if I get sick.
Rob
Hi Malinger,
This is Rob’s wife Mary Beth. This is just a total roller coaster ride that you wish would end!! The 25th is WAY too long to wait! I would start calling tomorrow and get the MRI as soon as possible. I thought waiting until tomorrow or Tuesday was long! I have some what of an advantage since I am a nurse in the recovery room at the local hospital and know the surgeons. The thing is, is that this cancer is so rare that it seems to be puzzling everyone! Rob’s first diagnosis in our town was metastatic stage 4 adenocarcinoma. We thought he was full of cancer and were told on the Thurs before Easter weekend and had to wait until Monday for the PET scan because of insurance! We had to tell our 3 kids and believe me; it was the longest weekend of our lives! The PET scan was clean except for the one tumor in the liver! Now they are saying Rob has mets all over his liver and spleen! I actually texted the surgical resident that assisted with Rob’s surgery and he said it would be highly unlikely that the cancer would grow back that fast with negative margins and lymphs. Rob’s local surgeon contacted another oncologist here since Rob’s is on vacation and he said he had a patient who had a liver resection who had spots all over her scan post resection and the repeat scan a month later was negative. This is what we are hoping and praying for; for both your husband and for Rob!!
Marion,
Yes, he even did my original biopsy. He also reviewed and made reference to my original MRI in this report. I will have another opinion of the MRI and results next week, a team review.Lainy,
Thanks, you’re the best!Rob
Thanks Marion,
Anyone know how the new survival rates compare to the old survival rates? I really don’t like the looks of the new ones, they seem lower?Thanks, Rob
Very good Matt, I have my 3 month scan coming up in a few weeks. Although, I started the process the same time as you did. It took me a little longer to schedule surgery, May 15th. I wish you well and stay strong my friend.
Rob
Thanks Everyone,
I’m thinking observation is for me, no chemo. I had a full workup before the liver resection, cameras have been everywhere looking for cancer, I even had a camera where I didn’t know they could send a camera, poor little guy!!! I had a cystoscopy, endoscopy, colonoscopy, CT scan, MRI and full body PET scan. I think most major organs have been biopsied and all my blood work was and continues to be normal, no cancer markers or elevated anything blood related.My Surgical Oncologist said, “go enjoy your life, no restrictions” and he wants a scan and follow up in 6 months, not sure what the Medical Oncologist is going to want for follow up and monitoring, he is waiting on my chemo decision.
I’m an odd case as far as I can tell compared to most of our friends here. Remember mine was an incidental find, no symptoms, no elevated blood work or positive markers. After the liver resection I have clear margins, clean lymph nodes & gallbladder and the tumor was described as encapsulated. The Surgical Oncologist said I am currently cancer free and I forgot to ask that same question to the Medical Oncologist yesterday, shit..
Still, if anyone thinks no-chemo in my case is a big mistake I would like to hear from you?
Diet…..
I want to make huge changes in my diet like everyone is suggesting. Can anyone recommend a good book? I will check out the diet post here also.Thanks, Rob
Thanks for all the love everyone.
Went to the medical oncologist today, first appointment after the successful resection. Looks like he is following the National Comprehensive Cancer Network (NCCN) guidelines.
For post resection status of (no residual local disease) = (R0 resection)
Adjuvant Treatment: Observe or Clinical Trial or Chemotherapy? My Choice!
I’m leaning towards Observe, anyone think I’m making a HUGE mistake? By the way, I’m 55 yr old and very healthy, (except).
Thanks, Rob
