HCC PATIENT LOOKING FOR NEXT STEP

[WayCas]

I want to give you a brief history of my treatment. I have had a combined treatment of Y90 Radioembolization with Nivolumab. All my doctors say I am not in the textbooks or in uncharted territory. They really don't know what to offer me. My goal is first tell you my results and success and ask your knowledge and assistance in what you think of my treatment and what my future treatment should be. Let me think you first for your time and knowledge.

I am a 66 years old male, healthy, with no history of cirrhosis, smoking or hepatitis. But, June 2017 I was diagnosed with advanced HCC with PVTT. The tumor is in the right lobe and was 12.8 cm x 10.2 cm with portal vein tumor involvement and my initial AFP was 2500. In July, I had Therasphere with Y90. My AFP was 18,000 on September 1 and 25,000 on October 15.

I was started on Sorafenib and took for 1 month which made me very sick. Started Nivolumab Nov. 8.

After 8 Nivolumab 240mg treatments, CT was done on Feb. 27, 2018. CT showed shrinkage of the tumor to 4.8cm x 6.0cm. My AFP was 3.2. A month later the AFP is 2.1. There is still portal vein involvement. Initially, there was some question about metastasis to right lung and L4. This has been evaluated by several radiologists and latest there is no metastasis.

Currently, I am feeling very good. Liver function is normal. I am now looking at the next step. I am continuing the Nivolumab 240 mg every other week. My doctors really don't have an answer. They are considering Y90 again even though my initial response was poor. There has been some consideration of resection. But, they say there is no bridge to that treatment at present. They are also concerned about the toxicity of Y90.

I am really looking for direction. I want to enhance the properties of the immunotherapy. And, find the next step

[andersoncathl Caregiver]

Hi,

Thanks for sharing your story and what you have done. It sounds like you have had good success with the Nivolumab. I am not personally familiar with that but my husband had HCC in 2003 which was a very long time ago in terms of what is now available. I remember feeling that they really weren't sure what to try for him back then either. Has your response to Nivolumab 'leveled off' or does it seem to continue to be shrinking the tumor? I can understand the interest in resection. One just feels like it should be removed if it gets small enough. Not having direct experience (and not being a doctor), the only thing I might suggest is getting other opinions at major cancer centers dealing with HCC if you have not already done that. We had gone to Sloan Kettering, UPMC and MD Anderson in Houston. Please keep us posted on what you decide to do. I wish you all the best. I hope your response to Nivolumab continues to be positive!

[WayCas Patient in reply to andersoncathl]

Thank you for your reply and encouraging words. I started Nivolumab at the first of November. The CT was done at the end of February. At that time, the tumor had shrunk to 1/3 it size. I am not scheduled for another CT until June. Praying the shrinkage will continue.

The Nivolumab (Opdivo) was approved for the liver only a few weeks before I started getting it. Prior to that my prognosis was less than 6 months. Since then I feel better, have gained 40 of the 50 pounds I lost (almost too much). The long term results are not known. I have reviewed all the clinical trials and people are doing better but there is no good data on future treatment. A lot are trying to make the effect of Nivolumab last longer so apparently the immune system does slow down. I still believe it is more Miracles than Medicine.

As far as other cancer centers, when I was first diagnosed it was so bad no one would consider any options. Now that I have had a good response, options are available and I am willing to go anywhere. Any suggestions?

The wild card in my treatment is the portal vein. I have had one severe esophageal varices bleed that left me in a comma for 4 days. Doctors say it is fragile with anastomosis. Any specialist in this area?

Thanks again, I will keep you posted on my next CT in June.

[andersoncathl Caregiver in reply to WayCas]

After seeing your post about Nivolumab I did some quick research and it does seem quite new but some people (like you) are getting good results. Of course, as you say, there isn't much data on the longer term effects since it is so new for HCC which is frustrating. We saw Brian Carr at UPMC back in 2003 - it seems he may be in Philadelphia now, here is a link: linkedin.com/in/brian-carr-.... We also saw Dr. Abou-Alfa at Sloan Kettering bluefaery.org/dr-ghassan-ab.... I can't find the name of the doctor from MD Anderson but they have HCC specialists there as well. My late husband's family members were physicians and so these were the places they wanted us to go. We are on the East Coast. It really sounds like your doctor is following all of the best known options but second opinions (or third or fourth) can't hurt if you are up for it. I am very impressed with your taking such an active role when I'm sure you are not feeling very well! Hang in there!

[WayCas Patient in reply to andersoncathl]

Thank you again for your reply and for all the information that you have given me. This is very helpful. I am a retired dentist and our 4 sons are in the healthcare profession. Also, 2 daughter-in-laws are Physicians. So, has been been an incredible effort to find what the best treatment should be. Since my diagnosis in June and 6 month prognosis, it has brought the family together even though this may not have been what most people plan. Much of my work has been done to find answers and try to help others at the same time. Being a patient and a healthcare provider has enlightened me.

Thank you again. Please let me know anything that develops. I am so sorry about the loss of your husband.

[WayCas Patient in reply to andersoncathl]

Thank very much for all your help and information. I am so glad you are there to help. Even though my tumor has been shrinking. My portal vein is still the major problem and limits all other treatment. Do you have any resources to read or doctors to see who specialize in the portal vein? I know this topic is very close to you since your husband had portal vein issues. Thank you for your help and sorry for your loss. Wayne

[SMH40]

My sister was diagnosed with HCC in March, but she really had bile duct cancer. Sadly, she passed away last Monday. Her body was weak even at diagnosis and she couldn’t handle the treatments.

There is some very promising research being done with hyperbaric oxygen therapy and HCC happens to be a cancer that may respond to it. If my sister was not confined to a bed on life support during her last few weeks of life she would have tried it. She didn’t have the chance. Here is a link to a Ted Talk on the treatment: youtu.be/3fM9o72ykww(Not working as expected?). If you look it up on PubMed, you will find more info.

I hope this helps and I wish you the very best.

[WayCas Patient in reply to SMH40]

So sorry about the loss of your sister. Thank you for the information. I was not aware of hyperbaric oxygen and HCC. Will certainly check it out. Thanks again.

[AndreaWilson_Founder Partner Editor Caregiver in reply to WayCas]

Did you check into our Perthera report? bluefaery.org/precision-can...

Maybe it will help you identify the best treatment options going forward. At this time, it is free to all HCC patients referred through Blue Faery.

~Andrea

[Grank Patient]

Hi there, it’s Grank’s wife again! I thought I would introduce us.

So many similarities between yourself and my husband John. He’s 67, a none smoker and drinker, fit and strong, and with hereditary haemachromatosis. Cirrhosis is assumed, but has never been properly evaluated. Apart from spider veins he’s symptom free. They say his liver is compensated.

His supposedly 3cm HCC was accidentally found at our hospital in Wales in December. Upon referral to QEHB they read the MRI and diagnosed a 4.3 x 3.1 tumour with adjacent PVTT. His referring hospital said initially that without a transplant he would die, but they didn’t see the PVTT on MRI and this rules out transplant. What a shock that was!

We are waiting to see whether the tumour remains under 5cm which appears to be a condition of surgery. The latest CT scan and MRI hopefully won’t flag anything else, but as you know, stuff happens. I’ve been looking at the various other options and you have had a lot of success with the route you have taken.

The PVTT is a big issue, and although it’s branch, they tend to lump them all together for diagnostic purposes. In the east they appear to stage them.

I’m following you with great interest and wish you all the luck in the world. Susan.

[George0871 in reply to Grank]

My tumor was 7 cm and was able to be removed by traditional liver resection . I am to have bloodwork every 3 months and MRI in 6 months. No other treatment yet.

[WayCas Patient]

Susan,

Thanks so much for telling me more about yourself. There are many similarities. PVTT is my most serious problem if we can continue tumor shrinkage. We are facing the same battles in different parts of the world. Please keep in touch. I feel we can help each other. Wayne

[Eastwolf Patient]

I wonder if taking Nivolumab could help me