salsarcat

I’d like to affirm this advice…My husband had a liver tumor and was diagnosed as “unknown primary” and told by two medical oncologists that the only treatment was systemic chemo which would probably not do much. The dr. (Dr. C) he chose as his main ono, my husband hit it off well with him…and this was his “second opinion” guy as the first one neither of us felt comfortable with. But still, Dr. C also said that the tumor was inoperable. Six months after this diagnosis, and a try out with a chemo that had no effect, Dr. C had my husband scanned and said the liver tumor was starting to grow (up til then it hadn’t increased in size) So THEN after all that time, Dr. C said, “Well, I’ll set you up with an appointment with Dr. H who is a surgical oncologist and one of the most accomplished at liver surgery” What?! The thing I still don’t understand is that Dr. H the surgeon is employed in the same oncologist group that Dr. C is the head of. Why didn’t he refer my husband to Dr.H months earlier. So as it turned out, Dr. H told my husband, “I might not be able to get this tumor out, but looking at the location from all the scans, I think I can reach it and I’m willing to try.” It was a 4 1/2 hour surgery…and five months til my husband felt halfway normal again. But he WAS a candidate for surgery even though the first two oncologists said no. Dr. H did not give false promises and said he would do the best he could but wouldn’t know til he looked inside exactly what he could accomplish. But he reviewed my husband’s case carefully with a surgeon’s eyes and ended up giving a different answer. On top of that, my husband recently had the lung spot that also showed up on the original scans in 2006 treated through radiofrequency ablation. The first onco we saw just laughed at the idea of RFA and said Tom was stage 4 and none of those “new procedures” would help. Now my hub and I know that cancer could return in the liver area; we are not naive, but he is alive and moderately well because he got one more opinion. I am still frustrated and a bit angry witing this, and it all happened nine months ago, but when the head physician oncologist doesn’t refer a patient to his top surgeon with a surgical question, I just don’t get it. So please, all who read, investigate the options…talk to surgical, radiological, and medical oncologists. Each has a different perspective because they work with different treatments. Actually it was surgeon Dr. H who finally gave my husband a more precise diagnosis of cholangiocarcinoma….how strange that in that case knowing it was cc actually made us feel better because we knew what area the cancer started in and what symptoms to expect. That “unknown primary” scared my husband so bad because not only did he have a terminal diagnosis but it seemed to be just floating in his body. My hub was given 6 to 9 months and he’s still here after 15 and is up and around the house…does the hosuework while I work. He had taken early retirement and this isn’t exactly what he’d planned, but is grateful for the last two doctors that they took a chance on him.

I Just wanted to say I remember my positive encounters with MD Anderson…it is definitely a place to start. Although we ended up not going there, the patient intake coordinator communicated with us via email for a few weeks to get my husband an appointment and find the best dr to consult. At that time my dh was diagnosed adenocarcinoma of unknown primary…it was in his liver but the biospy suggested cholangio. He ended up having surgery after chemo did nothing for him…and a local surgeon reviewed his case and was willing to give it a try and removed tumor which was in liver but then he typed it as cholangio. Very strange turn of events…definitely investigate and have hope at this point…something so deep within the body, it is hard to know at first which is the best approach.

Is he taking any morphine? There is a jittery/hyper phase to this, at least for my husband there was. It wasn’t exactly anxiety, but more like a racing mind. When they first started him on it, he went to the computer store with me and kept going from aisle to aisle and talking about the products, more than he usually does out loud. Also, meds can interact…he went through a time when he couldn’t sleep much and kept taking Ambien which seemed to have a rebound effect of restlessness.

So one thing you might consider is what other meds he is taking and whether they have side effects. Also maybe the anticipation of chemo, with or without any other meds in his system, brings on a bit of “hyper” ness. Just some possibilities. Is he already on chemo? I’m not sure from reading your post, but I just woke up

Good question to ask…any behavioral changes are worth noting and investigation. Hope others here have some info.

Blessings,

Sarah

Thanks, he had follow up CT and PET scans a couple of weeks ago that didn’t show any new flare ups, although the dr in his usual grim way said “Well, it’s only been a couple of months.” That wasn’t the surgeon, who is very upbeat.

Tom had an addiction to opiates years ago and has a high tolerance. Then with the cancer/gallbladder pain he was feeling last fall, he was on morphine but needed a much higher dose than a lot of people. He told the intake people about this when he went for his pre-surgical appointment. But he was in surgery so long that the pain meds had started to wear off when he came out from anesthesia. They kept giving him more, but it took awhile for them to take effect. He had an epidural plus IV.

He hated the hospital because of the nose and beeping things. He was on Dilaudid for a day or two. It worked on the pain, but he hallucinated terribly and got no sleep. It was quite a week.

But mercifully his memory of it is starting to fade. He knows they all did their best to take care of him.

Oh, I am so sorry to read of such a sudden loss for you. I don’t have any definite answers…when my husband was diagnosed last summer, the docs said maybe he’d had the liver tumor “about a year and a half.” At least that’s what I remember, but I think it was just a guess. The CC tumor was discovered on a follow up scan to a prostate biopsy. Otherwise things may have followed about the same schedule. Tom started getting abdominal pain in fall of 06 and really bad reflux and a little bit jaundiced. I’m sorry I can’t offer more but just want you to know you’re not alone in the wondering.

My husband took Xeloda for three months, Sept – Dec 06. He didn’t have excessive nausea, and what nausea he did have was probably because of the diseased liver. He didn’t lose his hair although his hair thinned a little. The main side effect was the irritation and peeling of his hands and feet. He would do two weeks on the pills and one week off. The first sets weren’t much different in the way he felt, but by the time he got to the last batch of pills, he was really tired. But overall, he didn’t have a harsh experience. Xeloda had no effect on his liver tumor though. But he still thought it was worth trying. I’ve read some people say Xeloda was harsh, but he didn’t experience it that way.

Hi Keith, I don’t have a lot of experience with this directly, but my husband was on chemo for awhile…and he did get forgetful about short term things, and also would say wording that was slightly “off” like using one word when he meant another, or commenting on something he was thinking about rather than answering what I or another person was talking about.

Somewhere on other cancer info site, I read about the state of “chemo brain” and some explanations that made sense. My husband would even joke about it a little. when he did something strange or couldn’t remember, he would just shake his head and say “chemo brain.”

I think if you did a Google for the term “chemo brain” you’d find some resources. The basid theory seems to be that if chemo is circulating throughout the body, then naturally it will hit some brain cells. Also the body/brain is adjusting to extra substances being in the bloodstream, and the systems just get tired out occasionally.

I hope others have additional info…sounds like a “normal” reaction given the circumstances…

Blessings,

Sarah

Hi marylloyd, so glad he had clear scans. My husb just had appointment to review first scans after his liver/gallbladder surgery done Jan. 10 and no hotspots showed up, so he doesn’t need to start on any chemo. I am interested in nutritional approaches; he is too but likes me to do the investigating. Thanks for sharing your info. Mr. also has hepatitis C and prostate cancer. He’s still walking though. It has been a rough year with the surgery. CC was at last a diagnosis…before, his liver tumor was “unknown primary.” More of our story is in introductions from a couple of months ago. The diet you describe sounds very healthful. I hadn’t heard of the mushrooms you mention. My husband is a vegetarian but eats cheese, milk, and eggs. He lost a lot of weight but it has finally stabilized. Hope you have continued good luck. Nice to meet you.

Sarah