Updated information causing confusion - Blue Faery Liver ...

Blue Faery Liver Cancer

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Updated information causing confusion

Iggy08713287 profile image
Iggy08713287Patient
24 Replies

Hi all, my cancer recurred in January 2022. It’s in the right side of my liver this time. Three Tumor Boards later I have spent 10 weeks trying to come to an agreed upon plan and don’t yet have one. My cancer is aggressive so time is not on my side.

My local oncologist recommend Y90 and immunotherapy. The cancer research hospital referred me to the transplant team at another hospital. The transplant team recommends another resection.

These are the issues. Some feel with another resection there won’t be enough liver left if the cancer comes back a third time. It’s aggressive. As of now I don’t meet the criteria for transplant because the rest of me is too healthy. I have no other liver disease or other disease in general.

Some feel a Y90 won’t be able to get it all.

Immunotherapy is not suggested because if you have systemic treatment it hurts your chance to get a new liver.

As of this week, I have had all my tests redone to see what the tumors look like today. This is good. I have an appointment with the liver surgeon (transplant team) on Wednesday to review everything.

I have worked extremely hard to unite all my Doctors to come up with an agreed upon care plan. It’s been a full time job. The surgeon wants to cut and the oncologists wants to treat. The researchers want a new liver.

I Thank god I have the strength and ability to fight for myself at this time. The communication systems are being Improved tech wise but for the patient they are still broken and top it all off with Covid, need I say more.

24 Replies
WayCas profile image
WayCasPatient

Iggy,

This is all very confusing and difficult to sort out. Unfortunately, what you are experiencing is typical and similar to some of my experiences.

I have been before 2 transplant boards with similar answers. I was too healthy and my Meld score was too low at 14 for transplant. They only look at 28 or higher and still have low percentage to get transplant.

Surgeon considered reresection but recurrence is possible so this was not a good option.

I went with the suggestions of my Oncologist. I had 1 round of Y90 and 53 treatments of Opdivo, immunotherapy. So far, all has worked out very well. It has now been 2 years since last treatment. I feel this bet had better odds and so far it has paid off.

I hope these words give you some comfort. Blessings in all your decisions.

Wayne

Iggy08713287 profile image
Iggy08713287Patient in reply to WayCas

This is helpful ! Thanks. This is the first thing my Oncologist suggested. Then I went before the TB for transplant and they didn’t agree. But I have already had a resection and it came back fast. If it happens again I am done.Where was your cancer and what size were they?

WayCas profile image
WayCasPatient in reply to Iggy08713287

It was on right side. Started at 11cm after 2 years of treatment shrunk to 5cm. Doctors say cancer is stable. All liver function is normal. AFP was 25,000 at diagnosis. Now, 2.7. What is your tumor size and AFP?

Iggy08713287 profile image
Iggy08713287Patient in reply to WayCas

My first one was 7.5 on left side. That was resected. It had returned 8 months later on the right side a 2.2 and 1,1, but that was from my prior scan. I had another scan last week to get an update. Will have the results this week. I am not sure what AFPIs ? All my lab work is good.

I am not a usual candidate. I have no other health issues. My organs are good. No other liver damage either. Dr’s are a bit mystified. .

WayCas profile image
WayCasPatient in reply to Iggy08713287

AFP is a standard blood test for liver cancer activity. Ask oncologist, about it.I am also a rare liver cancer patient. Never drank, smoke and very healthy. Doctors believe this has helped with my prognosis. By the way, I am 70 now.

Since your new tumors are relatively small, has there been any discussion about microwave ablation? I had 1 small recurrence, 1.1cm, and it was successful.

Keep me posted and always here for support and questions.

Iggy08713287 profile image
Iggy08713287Patient

Yes I believe I have had all the blood tests. Wow that’s crazy about your health also. I am 68. Yes I had an ablation with my first resection. I have seen an intervention radiologist for a Y-90. I was all set up for that and the immunotherapy until the Dr decided I should see a transplant team first because my cancer has been so aggressive. I should have all the possible information I need this week and then we can look at a treatment plan. It is great that your treatment has worked so well. It gives me hope! Thank you for sharing all that!

Curly_Girl profile image
Curly_GirlCaregiver

This is all so much to take in - pretty much every treatment option (other than immunotherapy) being tossed in the ring! I hope Wednesday's visit helps clarify things. It really does suck that transplant is off the table because you are too healthy otherwise. I would think your general good health would make you an optimal candidate for fast recovery and a successful transplant, but hey, I'm not a doctor. (Nor do I play one on TV!)

I don't have good advice or experience to offer because any kind of surgery was off the table for my husband (portal vein thrombus threw a wrench in the works). But at least you do have lots of very good options available - it's just a bit of a gamble deciding which way to go. I will pray and wish you all the best!

Wendy

Iggy08713287 profile image
Iggy08713287Patient in reply to Curly_Girl

Thank you for your response. I will dig a little deeper about transplant when I have my appointment.

WayCas profile image
WayCasPatient in reply to Iggy08713287

I am told transplant is totally dependent on MELD score and national transplant registry board. Reserved for sickest patients. Portal vein issues can cause some surgeons to reject patients.

Wifey2021 profile image
Wifey2021Caregiver

You have such a large team! I have a very small but trusted, mostly, team. Not sure which is better, but your current situation would make me crazy. If I had a vote, it would be for locoregional therapy approaches while your liver is still good. Those have the best percentages of success for most people. The systemic treatments, which have pretty low success rates, can come later or in addition. Just my 2 cents. I’m not a doctor. I am praying for all of us, always. This is so hard. 😥

Iggy08713287 profile image
Iggy08713287Patient

Thank you! I appreciate your response.

dylan620 profile image
dylan620Patient

Hi Iggy, So sorry to hear about the recurrence. I know you don't want to do immunotherapy, but,

I want to share with you the results I've had with it. I was diagnosed with HCC in 2/21 & was

immediately started on Avastin & Tecentriq infusions every three weeks.

My AFP was 273,660 in 2/21. After one year on this treatment, my AFP is 3.2.

I had multiple tumors on one lobe. After they were shrunk by the infusions, I had Interventional Radiology Embolization in 8/21. I'm currently on the infusions every 4 weeks.

Peace and blessings in your journey.

Teri

Iggy08713287 profile image
Iggy08713287Patient in reply to dylan620

I might have posted in the wrong place. How are you feeling?

dylan620 profile image
dylan620Patient in reply to Iggy08713287

I feel great! There are side effects that I had to learn to deal with. I normally havelow blood pressure 110/70. Avastin gave me high blood pressure, but I have a

cardiologist now who monitors my heart & prescribes my medication.

Iggy08713287 profile image
Iggy08713287Patient

Thank you! How are you feeling health wise?

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner

Hello Iggy,I'm so thrilled to see how our community has responded. Do you have any updates? I encourage people to look at all aspects of treatment. From time, expectations, side effects, goals, finances, convenience, etc. Let us know if you've have any new news.

~Andrea

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

Hi Andrea. Actually I had my appointment with my liver surgeon and found out that my last MRI showed another tumor on a different part of my liver. Because the new one is further away from the others I have been taken off the surgical resection list.

My options are transplant which is being suggested. My cancer is growing very fast so I am not sure systemic treatment would work. I have 3 tumors that are recurring after my initial diagnosis that I had resected last May. The newest one showed up in 8 weeks.

If I go for transplant I can’t do -systemic anyway but I can have Y-90. This may be m best option to try to keep my tumors from growing and spreading which would not be good.

Anyone have more info on transplants? Dr said my meld score would start of at 26.

Thanks

Iggy

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Hello Iggy,Transplants are the best curative measure assuming you get a healthy liver. However, the waitlist is often long and some patients fall out of criteria while waiting for a liver. If Y-90 will control tumor growth and it doesn't make you ineligible to receive a liver (double and triple check this fact), I would do it if it were me.

UPMC has one of the best liver transplant programs in the country and one of the few living donor liver transplant programs. Go here: upmc.com/services/transplan...

Unos has a great overview of transplantation. Go here: unos.org/transplant/facts/

Also, our newest liver cancer guide has information about transplants. It's not on our website yet but I can send you a PDF. Just shoot me an email.

~Andrea

andrea@bluefaery.org

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

Thank you Andrea, I live in the Tampa Florida area. Have been referred to TGH. Please do send me the new informationVictoriadomanderson@gmail.com

I appreciate your reaching out.

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Hey Iggy, I'm not sure if I have the correct email. Does it include or exclude the word information? ~A

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

It starts with VictoriaThanks!

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Great! Did you receive my email from two days ago?

Iggy08713287 profile image
Iggy08713287Patient in reply to AndreaWilson_Founder

No I didn’t .. here is my email again

Victoriadomanderson@gmail.com

AndreaWilson_Founder profile image
AndreaWilson_FounderPartner in reply to Iggy08713287

Just resent the email! 😊

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