Words Like Locusts Flew From Her Fingers

Another Disappointing Day

Well, I guess they can’t all be bright and shiny, eh?

I had my appointment with Dr. Marshall this afternoon. He’s a world class type specialist on colon cancer at Georgetown University Hospital. His view is that I have a (rare) form of colon cancer “that is not going to go away”. He said this is the hardest thing he had to say to me. In his opinion, it’s not going away.

Then we talked a lot about how my cancer is more aggressive than the typical Pseudomyxoma Peritonei, but is not behaving like the usual colon cancer.

Let me back up a little here for the benefit of people who haven’t been following along on this whole deal. Five years ago I had a large villous adenoma (a kind of polyp) removed from my colon. It was “dysplastic” but was removed with clean margins and all the lymph nodes they sampled were clean, so it wasn’t called a cancer and I didn’t receive any “cancer treatment” (chemo, whatever) afterwards. In the intervening five years, some cells that escaped during that surgery set up shop in my peritoneum (basically the whole area below the bottom of the rib cage) and have been growing in various abnormal ways. Some of them have formed tumors — one is on my liver and there are at least a couple in what’s left of my omentum (a layer of tissue that covers the peritoneum). Some of the other cells have just formed gelatinous goo that’s sort of sloshing around in my peritoneum. (The goo is typical of Pseudomyxoma Peritonei.)

Dr. Marshall’s view is that since this is a kind of metastasis from what was originally a colon tumor (though relatively benign), what I’ve got is a form of metastatic colon cancer. He views Pseudomyxoma Peritonei as being only the kind that is slow-growing and (apparently) of appendiceal origin. So… he’s kind of a purist when it comes to terminology. Some other doctors would refer to my condition as being a rare form of Pseudomyxoma Peritonei of an “intermediate” grade that’s a bit more aggressive but still isn’t full-blown “signet ring cell” cancer. PMP is rare and there’s still a good deal of controversy over how to describe it and what is or isn’t actually PMP.

I guess it doesn’t really matter. Dr. Marshall has a clear understanding of the source of my condition and if he wants to call it colon cancer, it doesn’t really change much other than perhaps make the whole thing a little scarier. I should add that even though he said “it’s not going away” he did at one point make reference to having cytoreduction surgery with HIPEC as “potentially curative”. Of course, I chimed in at that point: “That’s what I want obviously. To be cured.” To be honest, though, my impression is that he doesn’t have a lot of faith in HIPEC as a curative treatment. We all need to keep in mind, though, that Dr. M. is an oncologist who treats cancer with chemotherapy. He doesn’t do surgery. So his tendency would be to see cancer problems through the eyes of someone whose set of tools consist of chemo drugs. A surgeon sees problems with his own frame of reference. Between my two specialist doctors — Dr. Marshall and Dr. Esquivel (the surgeon) — I think I’m going to get the best ongoing treatment for my problem, whatever you want to call it.

Anyway, on to his recommendation: Dr. Marshall thinks I should have 3 or 4 more rounds of chemo — my current FOLFIRI with Avastin regimen — and then have another CT scan to see whether the new drug is having any effect on my tumors. Oh… I should add here that I now also have a better understanding (and acceptance) of why they’re wanting to do more chemo instead of just diving in with another surgery. Apparently, there’s no way of telling with a CT scan whether my tumors are just clumps of goo on the surface of my organs (liver in particular) or are actually “digging in” and getting nourishment from my blood supply. That I had no tumor shrinkage from the FOLFOX chemo “suggests” that they may not be getting blood (which is good), but the doctors want to be sure and if they ARE getting blood, they want to find a chemo regimen that will shrink the tumors and make them easier to remove. Okay, so… that’s that. So, after the next CT scan (which will be in about 6 weeks), a decision will be made (again) whether to continue chemo with another drug, continue chemo with more of the same drug (assuming results show that it’s working), OR move forward with another cytoreduction surgery — this time with the HIPEC. (Heated intraperitoneal chemotherapy that’s done during the surgery, for those of you new to this saga.) Several factors will come into play. Are the tumors growing or shrinking? If they’re growing, is it fast? Are they starting to impinge on the functioning of any of my organs in a serious sort of way? Would it be dangerous to put off surgery?

Another thing Dr. Marshall talked about was the possibility of getting into clinical trials with other drugs. Again, it all kinda depends. Also he mentioned the possibility of sometime down the road having a special blood test to find out whether I’ve got a certain genetic mutation that increases the likelihood of colon cancer. He brought it up because several of my paternal relatives have died of colon cancer. If I’ve got this mutation, it would then be wise for, say, my nieces and nephews to also be tested so they could have a “heads up” on the statistical possibilities.

He also talked about the possibility of continuing on chemotherapy (something I’d get every day, presumably a pill of some kind that he said is well-tolerated) even after crs/HIPEC just to help insure against additional tumor growth. Like I hinted earlier, I don’t think he’s got a lot of faith in HIPEC. But…hey… it’s not one of the tools he specializes in.

So, I think that was pretty much it.

I was hoping I’d see him and he’d say, “Oh, heck yeah! You don’t need to be on systemic chemo! You need to have another surgery ASAP and this time with HIPEC! That’ll fix you up!” Sigh…probably unrealistic. So, I’m disappointed and kinda bummed by his less-than-rosy prognosis. I still think I’ve got a reasonably good chance of beating this, though, and that’s the position I’m taking as I move forward with it.

Their Best and Brightest

The Michigan debate: One candidate falls, one runs away with it – Right Turn – The Washington Post.

Ai yi yi.

Perry can’t remember what he’s going to do if he becomes president.

Cain continues to refer to the sexual harassment complaints against him as “unfounded” character assassination when it’s a matter of public record that the National Restaurant Association paid out millions of dollars to settle two complaints severals years ago before he even became a candidate. (Apparently, the NRA found the complaints believable enough.) And besides all that, what on earth qualifies a former pizza king with no real political experience to run the country.

Michele Bachmann is just crazy. (And creepy…really creepy. Like she lures children into her little candy house in the forest and then eats them.)

Most of the other Republican candidates are so ignored by the press that god only knows what their qualifications and policy positions are.

The only Republican whom I would consider capable of perhaps being a reasonable president is Mitt Romney — and he’s the one the Republicans don’t want because he’s “too liberal”.

This is the best they can do? There was a time (before Reagan, incidentally) when I might have considered myself “Republican-esque” in my political thinking. No more. The party’s been taken over by freaks.

Disappointing Day

I’ve heard back from Dr. Esquivel’s office and he wants me to have six more cycles of chemotherapy. I’ll be changing from the FOLFOX regimen to the FOLFIRI regimen. The difference being that instead of oxaliplatin, I’ll be getting irinotecan. I’ll still have the 46-hour 5FU infusion. Yippee. I should have fewer neurological side effects, but more diarrhea. (Yikes.)

This is really disappointing. I was looking forward to being done with this part of the program and getting on with the whole “chemo washout” and preparation for more surgery part.

In addition, Dr. E. would like me to have a second opinion consultation with Dr. Marshall at Georgetown. (Well, actually, the man himself or one of his associates.) Apparently, Dr. Marshall is another world-class expert kind of guy. My impression is that Dr. E. knows him and, this is really good, it turns out that my oncologist at Kaiser also knows him and did her fellowship under him. All good! My impression (optimistic, as always) is that since my situation isn’t dire enough to require immediate surgery, they want to mess around with chemo drugs a bit to see whether they can get any effect from them on the goo attached to my liver and the other little blobs of goo elsewhere.

Anyway, so that’s the plan. Dr. Marshall is not a Kaiser Permanente doctor, so we’ll be paying his bill ourselves (and I expect it to be a whopper of a bill.) Thank goodness for savings — and for insurance that’s covered the rest of my care. And thank goodness we live in an area where there are a lot of REALLY good doctors.

I’m considering canceling my participation in holiday concerts. I had expected to be off chemo and feeling better by December, but that’s not going to be happening. I expect to be feeling worse. (More diarrhea than I’m dealing with even now and definitely more fatigue.) So… it may turn out to be a very very low key winter for me.

CT Scan Results

I got the results back from my recent CT scan and since you’re reading this, I figured I might as well just copy the report right in here for your total edification. It’s down at the bottom of this post. As you’ll see, the goo continues to grow in my peritoneum, most specifically on my liver and in a few spots on what remains of my omentum. This is not unexpected. Systemic chemotherapy isn’t effective with pseudomyxoma peritonei because the goo isn’t really connected to any blood supply. I’m getting the chemo as sort of a precautionary measure, but it doesn’t really appear to be doing anything for me besides making me feel sick most of the time. My tumor marker results continue to rise at an alarming rate. The goo continues to grow. With any luck, I’m done — or very close to being done — with chemo. My oncologist is talking about switching me to some other drugs, but honestly I can’t see where that would make much difference. I await the word of my surgeon, Dr. Esquivel, as he is a true expert with this disease.

Anyway, so… the bad (though unsurprising) news with the CT scan is that the goo is still there and is growing. The good news is that it’s all still confined to my peritoneum and shows no signs at all of acting like a regular metastatic colon cancer. This is very VERY good news.

On my reports like this, they keep referring to my diagnosis as “colon cancer metastatic to peritoneum”, but that’s really not entirely accurate. The cells that escaped into my peritoneum and began multiplying as pseudomyxoma peritonei were not malignant. They were from a benign villous adenoma. Granted, villous adenomas are especially prone to go bad (“Bad polyp! Bad!!”), but mine was not malignant when it was removed. So… I’m guessing the various doctors, most of whom are likely unfamiliar with PMP, are just trying to come up with a description that seems reasonably accurate.

Anyway, here it is. I hope to be hearing from Dr. E. some time in the next few days and I’ll report back then.

———–

INDICATION: Followup cancer metastatic to peritoneum. 

STUDY: CT OF THE CHEST, ABDOMEN AND PELVIS W/ORALAND INTRAVENOUS 
CONTRAST, 10/25/2011

TECHNIQUE: Axial multidetector CT of the chest, abdomen and pelvis 
was performed during intravenous administration of non-ionic 
contrast. Oral contrast was also administered. Delayed images were 
obtained through the kidneys, ureters and bladder.

FINDINGS: Comparison is made with abdominal CT’S performed 5/31/2011 and 3/3/2011.

CHEST: There is a chemotherapy injection port implanted in the 
right anterior chest wall with catheter extending into the upper 
aspect of the right atrium. There are no significantly enlarged 
hilar or mediastinal lymph nodes. The lungs are clear. No axillary 
adenopathy is seen. A right thyroid nodule seen on the March study 
is not as conspicuous on today’s exam but certainly does not appear 
to have increased in size. No pleural effusions are seen. 

ABDOMEN AND PELVIS: The previously noted subcapsular collection 
surrounding the right lobe of the liver has continued to increase in 
size, now measuring up to 1 cm in width compared to about 0.8 cm 
before. This extends into the subhepatic space where it has a 
nodular configuration that measures approximately 2.6 x 1.6 cm 
compared to 2.1 x 1.2 cm previously. Findings are consistent with 
serosal metastases.Again noted are a number of ill-defined soft 
tissue densities involving the omentum with some interval progression 
since 5/31/2011. Image 2.191 on the current scan shows two nodular 
soft tissue densities just medial to the ascending colon that were 
not clearly visualized previously. These measure 1.2 and 1.3 cm in 
maximum diameter. An increased amount of ascites is seen in the 
right aspect of the pelvis, which, in the absence of intraperitoneal 
chemotherapy, would be suspicious for progression of disease as well. 

As noted before, the patient has had a hysterectomy. A number of 
clips surgical clips are seen in the omentum. 

As noted previously, the patient has had cholecystectomy. There is 
a small amount of pneumobilia. No focal liver parenchymal lesions 
are seen. The spleen, pancreas and kidneys are unremarkable. Bone 
windows are unremarkable. 

IMPRESSION: Findings are consistent with progression of disease.