My husband has been battling liver cancer since 2016

[Sschiltz]

I am new here so bear with me. This has been an extraordinary journey filled with a roller coaster of emotions. From terrifying, low points to highs with those that have taken the journey with us in support. My husband has endured multiple radiation and chemo embolizations, was multi-listed for liver transplant, then delisted due to the tumors growing outside of criteria and is currently under daily chemotherapy with Lenvima. I’d welcome the opportunity to connect with others that have traveled a similar path and offer support or share my story with any of you. Thank you for listening!

[WayCas Patient]

Sschiltz,

This is Wayne C. You are welcome to read many of my replies and posts about my journey with HCC. First, I want to commend you husband on his survival since 2016. Second, it appears he has great support at home, also. This is the most important.

The HCC journey is certainly a roller coaster with few answers or definitive treatment options. I am 67 and have had HCC since 2017. My journey is similar to his. One day discuss transplant then the next day it is off the table. I have responded well the Opdivo a form of immunotheray. You did not mention this as one of his treatments.

Schiltz, once again please read my posts, feel free to ask me questions besides being an HCC patient I am also a healthcare provider and have family who are also.

So, until we talk again. Stay strong and I am praying for you.

Wayne

[Sschiltz Caregiver in reply to WayCas]

Hi Wayne -

thanks so much for reaching out and for sharing your story. I read your entry with interest and we certainly have shared a similar journey. Greg just turned 69 and is healthy otherwise. Opdivo is the next course of treatment for Greg if his tumors stop responding to the Lenvima treatment. We live in the Bay Area in California and were listed in San Francisco and at Ochsner in New Orleans. He rose to #1 on the transplant list there so we moved to NOLA and actually had 4 “offers” in 8 weeks, 2 “on the table” instances which were cancelled at the last minute due to harvested organ disease issues. During that time his tumors grew out of criteria so he was delisted and we moved back home and was accepted into an Astra Zeneca MEDI-TREM immunotherapy Clinical trial at UCSF where he is currently. His tumors didn’t respond so he went on Lenvima in August. So far his tumors are stable, cancer hasn’t metasticized and his AFP dropped from 27,000 to 11,000. Yay! Side affects are major fatigue, some nausea and weight loss. We celebrate every single “good” day! Well everyday actually :). I’m glad to hear that Opdivo is doing its magic on you - and yes we were told the same thing about unchartered territory. The good news is there are new drugs coming on the scene for HCC now.

Would love to hear about your story and experience with Opdivo and any advice on how I can be of support to Greg would be extremely helpful.

Again - thank you. I am sending positive mojo and healing prayers your way! - Sarah

[WayCas Patient in reply to Sschiltz]

Hi Sarah,

Greg's journey has been very similar to mine. We have even seen some of the same doctors. I went to Ochsner in December for the Transplant Orientation. Very informative. All went very well. My MELD Score is 11 which is low considering the size of my initial tumor. They want to wait 6 months to get a reclassification due to the HCC. Another problem I have is the immunotherapy my create a problem with a transplant at the graft sites due to having to take a suppression drug after the transplant. There is very little information on liver transplant patients who have been on immunotherapy before transplants. Ochsner said they have no experience. I see Dr. Therapondos on Tuesday for my 3 month evaluation and MRI. Have to see how that goes. Also, see Dr. Cohen.

I can't imagine the emotional roller coaster you were on with the transplant calls. Then, the rejection of the donor liver then being delisted. That is horrible. What was the reason for being delisted?

My AFP was 25,000 but is now 2.0 since I have been on immunotherapy. I live near Jackson, MS. They have a transplant program at University of Mississippi Medical Center with a very good surgeon who I also see. They are very conservative and will not consider me for a transplant due to the previous high AFP which was thought to be a metastasis to my lung but no evidence now. Also, concerned about PVTT. I had one episode of esophageal varies bleeding but no cirrhosis. Does Greg have PVTT? Is it a single tumor or multiple tumors?

How do you like UCSF? I have heard good things and that is one of my next places to be evaluated. What is the Astra Zeneca MEDI-TREM immunotherapy Clinical trial at UCSF?

Lenvima is my next step if immunotherapy stops being effective. I took Nexavar first with terrible side effects. I have had only minor problems with Opdivo. It has been mainly joint pain and small rashes. I am diabetic and it has exacerbated the diabetes. Just don't read the side effects (HA). Just read them and be aware of the possibilities. My doctor does regular thyroid blood tests as a precaution.

You are right there are new drugs coming out. We are so fortunate to have options and have survived much longer than predicted. I consider each day a gift. Having great family support is most important. When I go in for my Opdivo infusion every 2 weeks, I am thankful to be there and see many people worse than me. I just say a prayer for them. My wife and I make plans and don't consider the alternative. Have to move forward. Even though, the reality is all around you. I know it is hard to get your mind off of it. Especially, when you have pain, nausea or other symptoms that remind you that there is a beast inside you. My goal is to conquer that beast. "I have HCC it does not have me."

Sarah and Greg, STAY STRONG.

BLESSINGS AND PEACE,

Wayne

[Jowheeler84 Patient in reply to WayCas]

Hello Wayne! Hoping you are very well at this time! Such a story to follow and would love to talk more about your journey and ask some questions.

Thank you so much,

[AndreaWilson_Founder Partner Editor Caregiver]

Hello Sschilitz,

I'm sorry about your husband. I echo Wayne's sentiments. HCC, in particular, is a roller coaster of emotions (I liken it to Mr. Toad's Wild Ride at Disneyland only not fun at all!). Please feel free to reach out to me personally. I'm actually looking for patients or caregivers taking Lenvima who want to participate in a special project with me personally.

~Andrea, President & Founder

[e-mail]

[Shakyamuni12 Patient]

Hi I have HCC My first DEBTACE will be on Tuesday I am scared to death Prayers to yur husband and you

[Sschiltz Caregiver in reply to Shakyamuni12]

Hi there -

It’ll be easier than you think - and can have promising results! First 24-48 hours may be a bit icky with fatigue and nausea but just remember it’s temporary and will pass. Some of Greg’s TACE’s actually had a delayed affect where all was good for a couple of days - then fatigue and nausea hit but it did pass. Hope is stronger than fear. Always.

[Shakyamuni12 Patient in reply to Sschiltz]

Thanks Sschlitz

[WayCas Patient in reply to Shakyamuni12]

Hi Sammie,

This is Wayne. It looks like you have decided on TACE. What helped you make that decision? Wish you the best and let me know how it goes.

Blessings,

Wayne

[Sschiltz Caregiver in reply to WayCas]

Hi Wayne! Actually when Greg was first diagnosed he had 5 TACEs - then 4 or 5 Y90 radiation treatments on the tumors. These were in an effort to keep the tumors stable, within the transplant criteria. There is a mandatory 6 month waiting period when you are listed for transplant with HCC as they want to see how the tumors behave during that time. If they stay stable, you’re given exception points and a higher MELD, making you eligible for transplant - which Greg was #1 on the list for several weeks. But during that time, the tumors grew out of criteria and he was delisted. It’s highly likely that the cancer would have returned post transplant (especially under immunosuppressants). This happened to a friend/mentor of our’s that went through transplant, only to have the cancer return in 2 years and it took him quickly. Centers want to ensure you can have a long life and benefit from the organ as there are so many patients that need this gift. Greg has 3 tumors but they grew and now has more. Since he has had so many treatments it’s hard for the radiologist to see what are tumors or treatment effect. He began immunotherapy when we returned back home from NOLA, then onto Lenvima when that stopped working. I highly recommend UCSF - and Dr. Katie Kelley runs all of the liver cancer clinical trials too. We are fortunate to be under her care and also under Dr. Guy at Sutter CPMC in San Francisco is his hepatologist and transplant doctor. I’d be happy to help you navigate the waters if you choose to come out west. I can’t say enough good things about both centers. Stanford sucks - we had a horrible experience with their liver cancer program. You are an inspiration Wayne and I appreciate your support.

[watergirl1 in reply to Sschiltz]

I'm being treated by doctors at UCSF and have nothing but positive things to say. Every single doctor, employee, nurse, etc. have treated me very well and always with a smile. That's why they are No.1 in the state of California. I'm very fortunate in that I do not, or ever had any symptoms of cirrhosis or HCC. I have had three TACE procedures which were all very uncomplicated and with minor side effects. I recently was diagnosed with PVTT in the right branch of the portal vein. It is very small and was difficult to find, but thankfully they did. I'm curious if anyone else has had this, and if so are you ever able to have a liver transplant after treatment. I have a living donor available but I don't know if the criteria is different or the same. They are going to start me probably on Sofinalib soon to try and shrink the tumor. I'm very anxious about this because as I've said I haven't had any symptoms and I understand this drug has some very serious side effects.

I'm very sorry that you've had to go through so much. I hope things get better for you in the future.

[Sschiltz Caregiver in reply to watergirl1]

I’m sorry to hear of your diagnosis - but you’re right - thankfully they discovered it! I have not had experience with PVTT and am unclear of transplant criteria for this. Nexavar and similar drugs all can have nasty side affects. My husband is on Lenvima as an alternative due to evidence of longer treatment effect and lower side affects. I suppose you have to weigh the risks versus reward with this. I’m glad you’re at UCSF and feel confident you’re being treated by the best. We’ve been under the care of multiple centers and they truly are. Stay strong and prayers your way!

[WayCas Patient in reply to watergirl1]

Watergirl,

I certainly understand your dilemma. PVTT just makes HCC even more complex and difficult to manage. I have PVTT and have been to 2 transplant centers. My first suggestion would be to see a transplant doctor and get their opinion. However, I will give you my experiences. The basics is at the center you will get a MELD score. The higher the score, the higher up you will be on the list for transplant. However, it doesn't stop there. With HCC you have to be stable for 6 months, then get an exemption showing that you have no metastasis, tumor size and other criteria before you are accepted as a transplant candidate. However, if you have cirrhosis and drink yourself to death with no HCC. You can get a transplant immediately. As a friend of mine did in 3 weeks. Whereas, I have lived a healthy life style and now have HCC and can't get a transplant. Sorry about the social commentary but it does make you mad. By the way, I just returned from my 3 month evaluation to get on a transplant list. Still have 3 more to go.

Back to PVTT. This was a no, no for a long time. Now, some doctors will consider a reconstruction of the portal vein but it is still considered risky. Most of the time it will cause you to be rejected for a transplant. My doctors will not consider a living donor transplant for HCC especially with PVTT. Another problem I have ran into is I am on immunotherapy, Opdivo. This is currently a contradiction for transplant due to graft rejection caused by the reaction with the immune suppression drugs after transplant. Also, due to HCC recurrance after transplant, there is no good treatment option. So, if you can take Sofinalib stay on it. I couldn't. It was horrible for me. However, if I knew immunotherapy might eliminate me from a transplant, I may have toughed it out more.

We are fortunate there is a constant amount of information available and new treatment. But, too many decision. Watergirl, I wish you the best and my prayers are with you.

Wayne

[Grank Patient in reply to WayCas]

I’m sorry for jumping in here. I believe we have corresponded before.

My husband was diagnosed with HCC in January and sent for transplant assessment but was declined in February as the HCC was said to be 4.3cm and adjacent PVTT was suspected in segment V of liver contraindicating resection. CT and MRI 6 weeks later confirmed this (no matter how hard we tried it was impossible to speed up the process).

My husband is Child Pugh Class A, has mild cirrhosis due to hereditary haemachromatosis, is a teetotal, and is in good health for 67.

He was listed for a resection, but due to waiting lists, delays all round, surgery didn’t take place until late March. By then the PVTT had travelled to segment VIII, and instead of laparoscopic surgery an open sectionectomy was needed.

My husband made a fantastic surgical recovery but we were dismayed with the path results showing an aggressive HCC, and although it was 3cm x 2.7cm (not 4.3cm) PVTT cells were seen microscopically at the cut end of the right portal vein branch. Having said that, the histology report was fairly poor and incomplete in parts.

When we enquired about post op treatment we were told my husband would be taking part in a trial but after a 4 week wait was told he was unsuitable. I requested an appointment regards post op treatment to mop up cells. The registrar said it was an aggressive cancer and further treatment was pointless. She said it had spread quickly in a very short time. She has prescribed a ‘watch and wait’ approach. I feel it important to add at this point that my husband had a CT scan in May 2014 to monitor his haemachromatosis and a 1.4cm lesion was found in segment V but the hospital told our doctor the scan was clear hence nothing was done about this lesion. We have evidence from scan results that the 3 x 2.7cm lesion excised is in the same place as the one noted 5 years ago.

I’m watching my husband building a stone wall 8 weeks post sectionectomy and am in disbelief at antediluvian attitudes and refusal to help an otherwise healthy man. We are in the U.K. and do not have private health cover, although we wouldn’t have got as far as we have without paying to speak to consultants. In Asia chemo embolisation is normal post op procedure either during or after PVTT excision.

I follow you all with great interest. I’m amazed at how well you are doing. As a carer I draw strength from you all.

We have an appointment for a second opinion at another hospital in a weeks time.

[Sschiltz Caregiver in reply to Grank]

Frank - What a journey you’re on! I can relate to the emotional roller coaster. You’re husband is a lucky guy to have you at the helm of the ship as it sounds like you’re on it! I’ll be interested to learn of how the next hospital approaches your husbands care. Please feel free to private message me if I can be of any support.

To Life!

Sarah

[Curly_Girl Caregiver in reply to Grank]

Oh my gosh -- I can't believe they would take a 'wait and watch' approach. I am so frustrated on your behalf! We are in the US and my husband's care is through the VA (Veteran's Administration) which also means long wait times for appointments, scans, etc. and I completely empathize with you on that front. It's a helpless feeling to not be able to speed up the process.

Your comment about watching your husband building a stone wall and his remarkable recovery thus far really resonates with me. Dave is working on our house and going to the gym, etc. while on Nexavar (he had a Y90 in July last year -- they will not do a resection on him because he, too, has PVTT). I am very happy to hear you have an appointment for a second opinion and I truly hope they have options for your husband. Sending you both strength and many positive vibes!

[reddog88 Patient in reply to Grank]

Sorry to hear of the difficulties you're having, it seems the health care systems in the UK and the US share a lot of the same inadequacies.

I'm currently on Nexavar and it seems to be working, altho not w/o some side effects.

I have pvtt, also. I recently figured out that it is basically a big blood clot(offhand remark by the Dr. as we were leaving) and I thought there were some things available that might help with that. Not the normal blood thinners they prescribe because I have low platelets from a bone marrow transplant in '93.

I came across several articles talking about nattokinase, an enzyme derived from fermented soybeans. I liked the gist of what people were saying about it and I started taking a combination of it and serrapeptase, another thing that helps break down fibrin in the body.

Both of these will supposedly break down fibrin and dissolve clots.

I won't get another CT scan for about 8 weeks and by then I figure the results will show up(or not).

I've been taking it for about a week and have had no ill effects.

I'm not advocating for anyone to try this or to use it to replace any prescription they may be taking.

ALWAYS talk to your Dr. before trying something new.

I'll update any progress after my next scan to see if it helps.

Again, best of luck to you and your husband!

[Shakyamuni12 Patient in reply to WayCas]

Hiya Way Cas It is 12 days post treatment. What a nightmare....anxiety made me change my mind...which now I am not so sure I chose correctly. When I arrived in procedure room the doctor noticed lab sent WRONG mixture...........I wanted to leave they sedated me and an hour later did procedure. After procedure was discomfort , however 4 days after it hurt to breathe. One day of nausea....tired of course....food does not stay in my body long...hoping that will start to change..I am in the occasional discomfort stage....headaches, bone aches, OTC for pain. my MRI will be a week from Monday.....having PTSD dreams of procedure room and wanting to leave and unable to. So we are all wired differently Happy to still have hair on my head....thanks for asking I will keep you posted peace Sammie

[WayCas Patient in reply to Shakyamuni12]

Sammie,

So good to hear from you. Glad you were able to make a decision. I have been praying for you and for the best decision and best treatment. I never had TACE but Y90 sounds about the same post treatment symptoms. Hope they go away quickly.

The PTSD is something that I have had with all procedures. It is something that really never goes away because you are living with the problem and never know when another procedure will be needed. I have learned to use it as a learning experience and learn from the feelings, visual things seen and even the emotions of other people during that time. These are the coping skills that have helped me.

Glad you still have your hair. That is a victory in itself.

Hope your next MRI shows good results. I literally live from MRI to MRI. I asked my doctor if I could have one every week. He laughed and said better not do that.

Well good luck and keep me posted.

Stay Strong and Prayers,

Wayne

[Shakyamuni12 Patient in reply to WayCas]

HI MRI tomorrow Not looking forward to more chemical in my body as chemo is still in there.....thought I saw some hair loss but could be normal so tired, depressed and still trying to find a med to sleep Don't want to leave the house but force myself due to boredom and it helps to be around people Trying so hard to think positive thoughts ...hard to flip into that mode....anyway good t hear from you and I will keep you posted Sammmie

[Sschiltz Caregiver]

Sending good luck with the MRI and hopes that it will reveal tumor shrinkage! There is such a thing called scanxiety - we have it every 6-8 weeks with each CT. Keep the faith there are new treatments coming all the time, and one will work for you that enables you to have more good days and a longer life!