WWTBAM Bored

Particularly those with oncology experience:

MarleysDad's liver cancer is back.

The doctor wants to follow up the latest CT scan with a PET scan. Then, since this is apparently now inoperable, he's mentioned using a drug called Nexavar. I've been reading up on this, the bottom line being as follows:

Treatment with Nexavar has been shown to increase overall survival in patients with unresectable HCC. In a large study of 602 patients, Nexavar increased survival time (10.7 months with Nexavar vs 7.9 months with placebo) and the time until the tumor progressed or grew (5.5 months with Nexavar vs 2.8 months with placebo). This was the first time any therapy was proven to extend survival in patients with unresectable HCC. As a result, Nexavar became the first medication to be approved by the FDA for the treatment of patients with unresectable HCC.

In this same study, Nexavar was generally well tolerated by patients, but some serious side effects occurred. The most common side effects associated with Nexavar were diarrhea, fatigue, abdominal pain, weight loss, anorexia, nausea, hand-foot skin reaction, and rash/desquamation.

Notice the survival times mentioned above. What I can't determine from the summaries I've found is what stage the cancer was in the study patients. I presume, if they had later stage cancers, the survival time would be shorter than for those with an earlier stage. The CT scan report MarleysDad sent me doesn't specify, but it looks like he'd now be considered to have Stage II.

Comments?

No answer on the drug, but...

I am sooo sorry Marley.

Hugs to you.

Good luck to Dad and to you, Marley.

MarleysGh0st wrote:Particularly those with oncology experience:

MarleysDad's liver cancer is back.

Yikes! I'm sorry for your family's troubles. --Bob

I am sorry your dad has taken a turn for the worse. I am sorry you are dealing with this horrible disease.

You have my empathy and hopefulness.

Marley,

I am sorry to hear about your dad.

It's your father's decision of course, but I wouldn't take something like that - with all the possible side effects - just to live for three more months.

MarleysGh0st wrote:Particularly those with oncology experience:

MarleysDad's liver cancer is back.

The doctor wants to follow up the latest CT scan with a PET scan. Then, since this is apparently now inoperable, he's mentioned using a drug called Nexavar. I've been reading up on this, the bottom line being as follows:

Treatment with Nexavar has been shown to increase overall survival in patients with unresectable HCC. In a large study of 602 patients, Nexavar increased survival time (10.7 months with Nexavar vs 7.9 months with placebo) and the time until the tumor progressed or grew (5.5 months with Nexavar vs 2.8 months with placebo). This was the first time any therapy was proven to extend survival in patients with unresectable HCC. As a result, Nexavar became the first medication to be approved by the FDA for the treatment of patients with unresectable HCC.

In this same study, Nexavar was generally well tolerated by patients, but some serious side effects occurred. The most common side effects associated with Nexavar were diarrhea, fatigue, abdominal pain, weight loss, anorexia, nausea, hand-foot skin reaction, and rash/desquamation.

Notice the survival times mentioned above. What I can't determine from the summaries I've found is what stage the cancer was in the study patients. I presume, if they had later stage cancers, the survival time would be shorter than for those with an earlier stage. The CT scan report MarleysDad sent me doesn't specify, but it looks like he'd now be considered to have Stage II.

Comments?

I am not an oncologist, nor do I play one on tv. I was hoping one of the doctors would have weighed in by now. Are you really asking if Nexavar is worth the risk of the side effects? I don't think anybody can answer that with absolute certainty for any particular patient. The rock-and-a-hard-place situation your dad faces is that he's evidently offered no other choice beside surrender. I think that you should remember that the increase in survival time is an average. Some patients in the drug trial gained very little advantage, but some undoubtedly survived longer -- perhaps much longer -- than the time you cited. Side effects also vary greatly from person to person, from virtually none to an array of new discomforts. In short, I think the decision should be your father's to make, taking into account how much he wants to continue to keep fighting, and whether he is concerned that he might gain a few months, but at the risk having to fight some additional kinds of discomforts, too.

I would look upon the drug as a bullet -- not a "magic bullet," because it won't cure the cancer -- but because it can cripple the enemy for a while, giving more time to get things done that might still need doing and hoping for continuing medical advances and/or miracles to appear.

I'm very sorry your dad, you, and your entire family are faced with this kind of decision. My prayers are with you all.

Dang Marley, I'm so sorry. I didn't even remember that your dad had liver cancer.
My mom didn't have cancer, but my dad was diagnosed at age 92. He decided to undergo
radiation and chemo and actually lived 9 months longer than any doctor ever thought he would. Those
nine months were pretty good quality months of living. He didn't get really get sick until the very end.

Each individual is different so it really might be worth it. I don't know your dad's age, but no one ever
thought my dad should even consider any treatment at 92. However, he was a vital, active 92 year old
and still had a good quality of life at the time.

Good luck with your decision and my thoughts and prayers are with you.
Kay

I was asking for general comments, SC, but one specific one was about the stage of cancer of the patients in the study, in comparison to MarleysDad's stage. If theirs was much further along, then those average figures might not be relevant in this case. And I understand that averages don't necessarily apply to to individual cases, etc.

And this is just the tip of the iceberg in a whole can of worms (to mix my metaphors). The big, long-term one: MarleysDad is the primary caretaker (with part-time help from a home health aide) for MarleysMom, who has never gotten her strength back since she was in the hospital, two years ago. And, mostly because of her fear of what might happen, she doesn't want to be left alone, ever. So someone has to be with her 24/7. She hated, absolutely hated, being in a nursing home for a month, after her hospital stay. If she had to move in with me (Ithaca) or MarleysSister (California), we'd still need to make some arrangements.

A year ago, I talked about the filters/attitudes that MarleysDad has about the doctors and the medical industry. I don't know how much info he's really absorbing from what the doctor tells him, but he told me a year ago that he felt "this is it" and no doubt he's feeling that, again.

And, did I mention that MarleysDad and MarleysMom have never really been able to have serious discussions about anything, much less about the subjects that will be on the table now?

Kay, he got the diagnosis on Dec. 24, 2007. A nice Christmas Eve, huh? But he had surgery to remove the tumor last January, which went very well. The margins were clean and follow-up blood tests were all good, so we thought they'd got it all, until this month.

MarleysDad and MarleysMom are both 80.

Aw, jeez. Double-tough spot, squared.

I can offer only this unhelpful and seemingly pointless advice: If you spot a matched set of American Tourister Luggage under the stairs, even if nobody has touched it for 40 years, just leave it there.

silvercamaro wrote:I can offer only this unhelpful and seemingly pointless advice: If you spot a matched set of American Tourister Luggage under the stairs, even if nobody has touched it for 40 years, just leave it there.

Yes, I remember that story well!

Marley, I'm so very sorry for what your dad and family are going thru right now. It'll be a hard decision, and weighing out the pros and cons of treatment will be complicated for all involved. I send my sympathies and hopes for the best for father, whatever that turns out to be - and for mother as well. You may find they are both stronger than you realized.

Oh, Marley.

I am so sorry to read this.

Sending all my best wishes for our whole family.

what friggin news to occupy the most dismal month of the year, after the holiday period.

I assume from the context that MarleyDad's cancer is primary hepatocellular carcinoma, AKA hepatoma, AKA HCC, which was resected.

I am just confirming that because in man-on-the-street as opposed to strictly medical parlance, often "liver cancer" is used to mean, simply, cancer in the liver, and not that the cancer has originated i the liver itself (hepatoma),.
(as opposed to, of course, alternately, having travelled from somewhere else, like the colon).


It also appears that you are quoting from the nexavar website, which appears to be pretty fair, but is of course written by the company which sells the drug. It's a new drug to me, but a lot of new agents are coming into use in oncology, with varying degree of efficacy.

The crucial points which occur to me on reading this same material are that this is an oral medication, which is a lot simpler than IV or intra-arterial therapy, and that as such, and working differently from the older classes of chemotherapeutic agents, at least some of the horrid side effects which one might have to accept in return for some degree of life prolongation are not there. Or don't seem to be. Like decreased white cells, decreased platelets, high risk of generalized sepsis, and so on.

I would want to know more about drug-related fatigue, and the skin reaction.

From the web-site material I don't see much on anatomic staging, at least in part because the study protocol was much more concerned about functional staging, and given the strong relation of HCC with cirrhosis, the concern about functional staging is reasonable to begin with.

I think this is enough for one post, and I am interested in hearing other medical types chime in.

I'll leave the advice to the doctors...but I will let you know that your Dad is in my thoughts and prayers. As are the rest of you.

no info here either, but hugs and good thoughts for you.

etaoin22 wrote:I assume from the context that MarleyDad's cancer is primary hepatocellular carcinoma, AKA hepatoma, AKA HCC, which was resected.

Yes, you're right about that and about my quoting from the Nexavar website. HCC, which was resected with apparent great success, last January. And Dad caught a lucky break there, IMHO, because he had gallstones which were causing him pain; the doctors were doing an ultrasound of the gallstones when they found the tumor in the liver. I understand that the early stages of HCC are asymtomatic, so that by the time a patient feels anything, it is generally much too late.

etaoin22 wrote:From the web-site material I don't see much on anatomic staging, at least in part because the study protocol was much more concerned about functional staging, and given the strong relation of HCC with cirrhosis, the concern about functional staging is reasonable to begin with.

Anatomic staging? Functional staging? What do those mean to a layman?

Marley, I'm saddened and sorry to hear this news about your Dad.

Minty man

Marley

I'm no oncologist, but if you want to think 'out of the box', you may want to look into the major anti-oxidant things that are out there. I read alot of stuff about anti-cancer foods like acai berry (and other related berries). I have given a drink called "Monavie" to one of my patients who has just found he has liver cancer Grade 4, and doesn't want to go the chemo-radiation route.

There are many doctors who preach alternatives to the typical medical treatments. Look them up online.

Otherwise, I pray for you and both your folks.

The side effects are horrible. So are the effects of cancer. But the skin stuff is the only stuff he couldn't already expect from the cancer. One question on the abdominal pain is "would the pain meds he'll already be on cover it?"

Your father gets to choose.

I would choose to at least try it, but might reconsider if the effects are too horrible. You have to note that not everybody will have these effects, but supposedly everybody will have the life-prolonging effects.

Also: Are there any test trials of even better drugs he could get into, & would he want to? If your doctor doesn't know, try to get referrals to someone who does.

My heart goes out to you & your family on this.

Marley, I'm so sorry about this. Prayers and hugs for your Dad, and your Moma and for you and your sis.

SWMBO's mom is going through something similar, but as etaoin pointed out her cancer is in the liver, but not of it. A biopsy revealed that it is the same uterine cancer she endured several years ago, but migrated to the liver. In fact, it was even messier than that, since it was also attached to the diaphragm. Here's what little I do know about what you're facing:

the PET scan is to get a better look at where the cancer is, presumably to help diagnose, but also so they can do a biopsy. True liver cancer (HCC) is nastier than, for instance, my MIL's uterine cancer in the liver. If our experience is any judge, the oncologist won't tell you much of anything until s/he's seen all the scans.

Like Marley'sDad, SWMBO'sMom had surgery on her cancer, and is now in the middle of a course of chemotherapy to reduce the remaining tumors. There are at least two "areas of concern," and they do not appear to have been affected (so far) by the chemo. If she finishes chemo and the spots are still there, we have not been told anything about other options yet, except that they will not operate again.

Good luck, and don't hesitate to make a nuisance of yourself when you're talking to doctors who actually know something about the situation. Ask about everything and anything that might be germane, and don't be afraid to take a list with you.

I'm glad that your Dad at least appears to have the wherewithal to make an informed decision. I hope you're glad, too. Best wishes.

Marley'sG-

So sorry you and your family are going through this. Hugs.

t.