I recently had liver resection due to stage 2 HCC. Everything seems to be doing good. By 12 weeks the platelet count went down to 150 which is still normal but when it hits 14 weeks it drops to 132. Does anyone here had that experienced. I have friend who started with 120 platelet count after liver resection and buttom down at 60 at the end of one year. Sometimes it goes up to 104. (He has diabetes. He elected to take the surgery due to liver cell mutation and not HCC)
Does anyone have that same experienced. ThAnk you for sharing
Thanks for sharing your story and sorry you’ve been through such a rough time. I think @Kinoti is the only one on the forum that I know who has had a liver resection. I’m not sure if he can help.
Possibly @HealthExperts might be able to chime in here too.
Hi Ccheng8346
I am happy to hear your story and that you are doing well. I had liver resection on 12.11.2022 and my platelet count was 162.Eight months later, that is, on June 2023,they were at 178.Unfortunately I suffered multiple pulmonary metastasis and the platelets dropped to 132.I am responding well to lenvatinib cupsules and will consider lungs resection if the metastasis reduce to a resectable number. I have lost lot of weight and experience lot of dry cough which keep me uncomfortable. Probably that’s why I choose to be away from our forum until I am reasonably recovered.
Kinoti
At what stage your HCC when you had resection ? I read that if platelet is high there is a chance the HCC May re occur . You have metastasis from the liver to the lungs? Will Tagrisso help with lung metastasis ? I am not sure how they classify your lung metastasis. My sister has Primary lung cancer and she is stable with Tagrisso without any resection . What country are you in?
Thank you for your email. My HCC was at the intermidiate stage (stage 3) with AFP of 32.
I am new to Tagraso as you are mentioning it to me for the first time. May be I will pick it up with my oncologist on Wednesday during my monthly visits.
HCC as I read it has a very high rate of recurrence. I pray however this doesn’t happen to you.
Kinoti
All my test are perfect score even my alpha feto protein are way low plus the CA19-9 are very low. My fibrosis score are perfect . Those blood test are elusive . I get ultrasound every 6 months they saw a 1.1 cm and they ignore it. ( I had small lesion 15 yrs ago and it comes and go. The following 6 months they can’t see any lesion …then on April they found the lesion at 4.7 cm and the MRI shows it’s HCC. They did a pathology report and it’s HCC and isolated in only that one lesion stage 2. Will be getting my MRI on Oct 22. Followed with meeting my surgeon and my hepatologist. The only worry I have is my platelet starts dropping two months ago. My hepa doesn’t seem to worry. The only indication for a functional cure if is our HVBs antigen is less than a 100. There are clinical 3 from GSK to inactivate the CCCDNA so people who have chronic liver disease
See their HVBs Antigen drop below 100 to be called cute . Hope they can treat your metastasis to the lungs with another targeted therapy
Hi carlo
I forgot to tell you that I am an African male in a small East African country called Kenya. Intermidiate stage of HCC is stage 2 not 3 has I have written in my email
Kinoti
I understand the cccDNA hides in liver cells and even after liver resection the disease will re occur unless the Pharma like GSK find us a cure . The anti retroviral drug just suppressed the virus but as long as the HBVs antigen is less than 100 , the disease is still active. . I hope and pray you will overcome this dreaded disease and go on remission. Some targeted therapy are very powerful drug even the disease metastasizes, it still works.
GSK Pharma is testing its drug in clinical three hope it gets approved next year. The usage maybe limited .
By the way, all my AFP are <3 and my CA19/9 are normal . My Alt’s are in the mid teens 16-19 and and my liver fibrosis shows no indication
of cirrhosis . Though my HBVs antigen is at 150 . My platelet count is as high as 198 before and after resection. Then it’s starts to drop after 12 weeks to 150 then 4 weeks ago it was at 132. I am not sure what’s happening . I will be getting my first MRI in 3 weeks then follow up with my surgeon and my hepatologist .
I know one guy who had liver resection 5 or 8 yrs ago (not sure what stage he is in when he had his resection )
It’s good to see you post. We have been wondering and worrying about you. What you are going through sounds so scary to me. You and now Carlos are the only two people I have ever personally known of, that have had any cancer resections in their body.
I don’t remember how many months ago it was, but you had asked me to email you with some info. I did send you that email, so I hope you received it. I just want you to know that I understand that you can’t be very active on the forums during this hardship but I also want you to know that you aren’t going through this alone. Even when you aren’t on the forums, you are thought of. We wonder about you and discuss our concern for you amongst the leadership. So hopefully it helps your heart a little to know that we care. I appreciate the update and knowing you are still kicking.
Let me know if you didn’t get my email and I will send it again.
Stay strong for yourself, for your family and friends… and for us,
Hi paul
Thanks Paul for always allowing me to be part of your thoughts.
Today I was in hospital for my four months follow up. I have been on lenvatinib treatment but it isn’t working out. My doctor is working on another regimen. How we wish we had somebody to support us with immunotherapy such as opdivo. It’s very expensive he tells me. Anybody who can help me?
Sure I love this forum and I read all your emails. They are such an encouragement to me even with my current predicaments.
Please continue praying for me.
Kinoti
They already starts clinical 3 . I do hope this drug works to help us people with Hep B for a functional cure
Phase 3 Multicenter, Randomized, Double-Blind, Study to Assess the Efficacy and Safety of Treatment With Bepirovirsen in Nucleos(t)Ide Analogue-treated Participants With Chronic Hepatitis B Virus (B-Well 2)
Hi carlo
Thanks again.
People look at things differently at different times. My problem is no longer hep b, it’s HCC that is now killing me. How do I get out of here?
You mentioned about these combination therapy of two monoclonal antibodies for HCC, these was accelerated approvals. Do you have these drugs in your country ?
Hi carlo
You did ask if opdivo is available in my country. The answer is no, but any interested person can buy and sent it to in Kenya. My oncologist tells me it is very expensive. How I wish I can get someone to help.
Kinoti
Yes Monoclonal antibodies are expensive and it’s only available for few now since they speed up the approval . Not sure if your doctor can request directly from those two drug companies if they can send some dosage to you out of compassion . Or you can inquire with this organization. Hope it’s not only limited for us citizen
Try to inquire they may have funds for HCC
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