Realization

[RolloMay]

I have had HCC 6 months now. I have come to realize the key in treating this is not whether the meds work; but rather whether you respond to the medication. I have read of good and great effects from the medications, however the response rate of immunotherapy agents is a maximum of 31% and a minimum of 15-20%. The oral chemo meds maximum resp rate of 40% and min of 8%. Hopefully soon, will figure out how to have more people respond to the medication it appears. (Not so much better medications). Anyone know of how to position oneself to more likely get a response?

[DancingEyes63 Moderator Caregiver]

Hi ..many times it also depends on what other health conditions you have, the condition of your liver, how you tolerate the treatment (side effects). Unfortunately another factor is that at the moment there is no treatment to cure HCC, only palliative treatment that hopefully will slow it down. Most of the treatments will hopefully gain you a few months. Some are lucky and gain years. Then there's the whole insurance problem. Some insurance companies make you try one treatment before they will approve the treatment that the doctor feels is best. You are right. Some treatment works great for one patient and does nothing for a different one. Some treatment works better for specific types. Problem is that since although we do have more options than even a couple of years ago, since there is no cure sometimes it becomes a "let's try anything" approach. I'm speaking from experience because when the Lenvima stopped working and we realized that Jimmy's liver was full of tumors , the oncologist exact words when recommending immunotherapy was "what do you have to lose '. Jimmy actually DID have something to lose. Due to his liver disease, while the immunotherapy was shrinking the tumors, it was also destroying what was left of his liver function. Thankfully his GI realized this and had us stop and gained us a year. Always remember you have to consider the WHOLE picture when you decide on treatment options and ask questions, especially if you're feeling worse. Sometimes we have to make a decision whether quality of life or quantity of life is most important. Does gaining three months matter if you're too sick to get out of bed due to treatment? It's a choice we often have to make.

Whatever time you have, do your best to live it and enjoy it. That's how you beat HCC. You don't let it take over your life where all you think about is cancer and all your days are filled with either having treatment or being in bed sick because you just had treatment. Believe me, we do still need better treatments. 💔. Sending my prayers and good wishes to you. Hang in there. If there's any opportunities to be involved in something as an advocate, really consider doing it. That's the only way things will change...we have to make them change.