Just Diagnosed, HCC, Trials - Blue Faery Liver ...

Blue Faery Liver Cancer

Just Diagnosed, HCC, Trials

agc3fcn
agc3fcnPatient

Hi,

Last month I was told I have a 9x9x7 HCC tumor in segment 6, maybe 7 too... I have had 2 biopsies, one MRI, a CT scan and am interviewing multidisciplinary teams this week here in Colo. and Texas. Maybe I should ask for a PET scan? I have been told there is small possibility of it having spread. Last week Mayo Minn. asked me to participate in a trial with EBRT and DC's. Things seem to be moving really fast and I am trying to learn about the available/approved drugs and treatment options, before I commit to "conventional" treatment and surgery...

I am leaning to participating in trials of vaccines and immunotherapies and combination therapies, not chemo, radiation, and surgery as the only answer for a cure. I have been told that TACE, chemo, and resectioning is the cure. But, most teams seem to be led by surgeons and surgeons sell surgery. Research finds answers. I had 5 of my Family pass in 9 months from cancer in the 80's; I am not sure if the cancer took them or the chemo and radiation, before any of them could even get to surgery. Most were caught too late for the treatments available then... and, research was just breaking through the chemo, radiation, surgery models...

So, I have been through trial chemo drugs for Hep C years ago, and was cured, although the drug I used was not approved because of extreme side effects and deaths. Each week I was in oncology for procrit for anemia and had multiple blood transfusions. It was 6 months active and 2 years before I felt full recovery. My liver function was restored, is still good, and I continue to consider myself "healthy".

But this is how advancements are made that help others. By volunteering, when the opportunity presents itself to travel, meet new people, learn new things, possibly be a living investment in the future of others, that counts. Since I am a man of strong Faith, I believe this is happening for a reason that will bless others, somehow. If for the chance to share a positive testimony, represent hope, I could be happy.

Someone said: "if you are to get what you have never had, you must be prepared to learn what you have never known, and do what you have never done".

I pray for each of you in challenges, especially you that are caregivers, those that support and fund cures, and for those who will not give up the fight to help find answers. God bless you all.

I will continue to share my experiences, don't give up.

Regards,

FC(Skip)Newman

10 Replies
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WayCas
WayCasPatient

Skip,

First, I want to send you my thoughts and prayers. I was sitting in your chair in June 2017. I was diagnosed with the same size cancer and location. I also had portal vein hypertension. Do you have this?

The doctors had now answers and gave me 6 months. They did not want TACE or resection due to liver damage and could cause failure. I started seeing doctors and contacting every center in the US. You have to be your own advocate.

I found studies from Duke in Singapore that were using Y90 with Therasperes followed by immunotherapy, Opdivo. I got my Ocologist to agree to this even at that time it had not been approved by FDA. Today, it is first line treatment. I had 53 rounds of Opdivo and finished on January 3, 2020. Today my cancer is stable and the mass is half the size.

All I can say is check this out and don't give up.

Let me know if you have anything other questions.

Wayne

agc3fcn
agc3fcnPatient in reply to WayCas

Wayne,

Thank you so much for the words and prayers... I took the time to look at your posts from a couple of years ago. Amazing that your determination and faith is bringing your life healing.

I am looking at trials of immune drugs, ablation, and dendritic cell combinations, there are studies that are recruiting and I have just opened to possibilities that are less intrusive, less damaging, and less toxic. You were blessed to get Y90 and immune therapy when you started, seems like a lot of oncologists and doctors struggle to use these options as they are not yet considered "cures", and I imagine privately funded in many cases.

I will keep posting as I move forward... GOD bless you,

Skip

Hello Skip,

Thank you for sharing your story in such detail. With HCC, surgery is your best option if it is an option and it isn't for most people. HCC can come back up to 50% of the time even with surgery, but it's still the best option if you're a candidate. What stage are you? That's the one thing missing in your details. Feel free to email me directly. andrea@bluefaery.org

~Andrea Wilson Woods, President & Founder

Also--if you would like a free membership to Cancer University (We have a great Liver Cancer 300 course), let me know.

agc3fcn
agc3fcnPatient in reply to AndreaWilson_Founder

Hi, I have consulted with multiple teams and my cancer is IIIA. All opinions see a resection

or removal of half the liver is my best option with strong dose of Y90 initially to kill the tumor and observe effects, This is a team from a major university cancer center here in Colo. that helped cure my hep c in 2009.

I have been studying and looking at many treatments that seem much less intrusive and are said to be effective, but, my doctors say that most of these type treatments are option for unresectionable patients or patients with smaller tumors. Losing the right side of my liver seems unnatural, but, I am told it is the only path to a cure.

AndreaWilson_Founder
AndreaWilson_FounderAdministrator in reply to agc3fcn

From my experience with HCC based on the stage of cancer and the information you provided, I agree with your team. Keep in mind, the liver is the only internal organ that can regenerate its tissue. It is magnificent and powerful. It's almost always preferable to keep your own liver rather than attempt a liver transplant (many complications, long waitlist). Do you have a palliative care specialist on your team? What about a pain specialist?

agc3fcn
agc3fcnPatient in reply to AndreaWilson_Founder

Hi Andrea,

I appreciate your concerns and responses, I know about losing loved ones to cancer and suicide... I am sorry for your Sister, she must have been a bright light. If you are a person of the Spirit and Faith, then, you known where she is... even brighter.

UCHealth Anschutz in Denver for the Y90 and possible surgery, Rocky Mtn Cancer Center oncologist for other services. I will investigate palliative and pain, good suggestions.

MD Anderson wanted me down there this week, but, I can start mapping next Mon., and Y90 Dec 7 here in Colo... so, I'll call Anderson, but, unless they have a better path, I'm going for Y90. Mayo wanted EBRT, Prevnar, and D cells trial if I qualified. But, so many options to consider, few present hope for cure, and I can submit for trials after Y90 for many different trials for palliative/ post treatment options, before surgery that are being conducted at multiple locations... because my liver seems to be functioning well and a good candidate for resection, I am compelled to start... I always felt if I got cancer, I would head to a Mexican clinic, for naturopathic options.

I still might... at some point. Maybe look around, the story about Hoxey has intrigued me, since I saw Ty Ballinger's first "Truth About Cancer" production, now, I'm not sure about what he is doing. Maybe gives hope to those that really need some answers other than "conventional" treatment. Seems like a lot of clinics around the border, but, I do not know how to trust their results and over sight...

Thank you for your interest and consideration, support groups are the source of hope and strength that got me through the HepC treatments... I pray I am making good decisions and that possibly, these conversations could help others...

God bless you,

Skip

AndreaWilson_Founder
AndreaWilson_FounderAdministrator in reply to agc3fcn

Hello Skip,

I would love to offer you a free membership to Cancer U, my health tech startup (separate company). We have a Liver Cancer course as well as a Proactive Patient course. However, I think you'll really like the Share Your Story interviews where patients, survivors, and caregivers share their stories. If you're looking for alternative options, I know many survivors who have chosen that path after trying traditional treatment. Please email me directly and I'll get you set up -- totally free.

~Andrea

andrea@bluefaery.org

P.S. You can check out Cancer U here: cancer.university (we're revamping a few things this week so some of the buttons may not work)

agc3fcn
agc3fcnPatient in reply to AndreaWilson_Founder

Andrea,

I would be honored and love the opportunity to participate in the Cancer U.

Blessings,

Skip

AndreaWilson_Founder
AndreaWilson_FounderAdministrator in reply to agc3fcn

Hello Skip,

Please email me directly and I'll get you set up. :)

andrea@cancer.university or

andrea@bluefaery.org.

~Andrea

AndreaWilson_Founder
AndreaWilson_FounderAdministrator in reply to agc3fcn

I do believe Adrienne watches over me every day. I do my best to make her proud. If you would like to read her story, here is a free copy of my medical memoir (though it may be too difficult right now): bit.ly/BetterOffBald

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