Russian Roulette Diagnosis
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Hi Lainy,
I certainly agree about multiple opinions and as much input as possible. It can be hard to untangle what’s submitted. In my odd case, I have a very good onco and a very good internist. I also have an old friend from college who is almost a Dr. House- when at his best, he comes up with stuff no one else does. But it is I who have to integrate and decide, as in the end we are our own final doctor/decider.
I had a gastric spasm today in writing class. Grabbed baking soda and water and downed it. Wasn’t as bad as some of them, but they sure are stoppers. I am hardly ever hungry and easily too full. I WISH I could get the munchies. House wants me on Ensure, but I won’t get near it- too sugary. I have my own shake I make, and I’ll just have to keep sipping them all day long.
Be well, Jeff
Hi Jeff. It was my husband who had the CC, he had a Whipple surgery so no I have not had your type of experience. I am wondering though if you have had another opinion. We are big believers in 2nd and 3rd sometimes even 4th opinions and doing that almost always gets good results, you know a new set of eyes? CC is a crazy, rare monster and I personally feel we should not be diagnosing ourselves and setting time frames and doing things that do not help the situation. We have had many members who were told there was nothing more that could be done, went for an other opinion and ended up with surgery or other treatments and an excellent prognosis. We even have a member, Bob who is in his 15th year. We have a woman who just hit her 10th year. New things are being discovered all the time now as we are finally being noticed. The key is to hang in mentally and physically until that one item comes up for you. It is good that you are in good shape physically so now we just have to get the insides to catch up with the outside. Best of luck with what ever you decide to do.
Has anyone had my conflicting signs?
New growths not seen 4 months earlier
But an 11 mm. body not lighting up on a PETIf new and big, it should shine, not be totally dark.
Anyone had this?
Creon was not quite as good and I’m willing to try anything. I know there are a few other brands, but I’ve not found them yet.
If the nodules are inert, why do anything? If they are really cc mets, there’s nothing to be done. My House-like source says my 1.1 is extremely easy to get, an outpatient procedure. But if I learn something 4 weeks earlier it takes me 5 weeks to recover from, I’ve lost one week, so is that really what I want to do?
Wow Jeff! Sounds like you are back on the roller coaster. Can’t add much to what Marion has all suggested, but hope things settle down for you soon. Keep us posted.
Darla
Jeff…..is Zenpep the only thing that works for you? Sure is expensive to keep a stomach smiling.
RAF or microwave ablation are meant to destroy the nodules (if applicable) for you. Biopsy would require a different approach.
Hugs,
MarionHi Marion,
Thanks so much for your help this evening.
A “House-like” doc I know told me the 1.1 cm. mass in lung is very easy to get to where it happens to be. If true, I might take a sample. He also told me how futile my two liver biopsies were, something I wish I had known before having them.
As for the indigestion, I upped my quality of food, decreased the amount per meal and never take less than 3 Zenpep. My stomach’s smiling but my wallet’s crying. The Zenpep are around $560/mo. for 10 months/year.
Hugs,
JeffJeff….others will chime in, but at present it is only me. Those on the East Coast and Midwest are sleeping, our overseas people have not yet signed in.
From what I have learned, nodules in the lungs (generally) cause little problems. However; you might want to consult with an interventional radiologist and see if RFA or microwave ablation is applicable. As you have mentioned, it is only suspected that these nodules are metastases.
Regarding the rising tumor markers and your problems with indigestion: you might want to cut back on fats and ask the physician for an digestive aid. Often times the physician may prescribe Creon, but it is possible that over the counter proton inhibitors may work as well.
So, don’t stay away for too long and keep us posted.
Hugs,
MarionNote: Apologies for my postings being all over this site. I cannot find my string and add to it
but at least Marion got me to where I can say something at least. Thnx.January 8, 2014
PLAYING PEEK-A-BOO WITH CANCER
Hi Everyone,
It’s been quite some time since I released a report, and true to the old saw, no news has been good news. I feel great except for minor gastric woes, and my blood numbers have been exemplary.
Two months ago I weighed 163, an all-time high, and I felt sluggish. So I decided to lose some weight. Method: Eat until no longer starving, then stop eating. It works! I began each morning with my favorite breakfast- DuPar’s 2 rashers bacon, 2 eggs and 2 pancakes. With 8 T. liquid butter. I am a shameless butter addict. Consuming all that butter with no gallbladder and a sliver of a pancreas may have asked for trouble. Next thing I know I’m on the scale and weigh 139 and it’s just 23 days later. I am very strong and can do gymnastic moves no one my age can. So I lost 24 pounds in 23 days- on butter and with few internal organs that process fats. Could that throw my metabolism into a loopty-loo? You bet!
I start having symptoms of fat malabsoption, so I get a blood test. Suddenly, I have very different numbers, all in the wrong direction. I am inflamed and leaking liver enzymes, but the number that gets everyone’s attention is the cancer marker, CA 19-9. It’s supposed to be below 37. Before I went to Boston, it was 123. After the surgery it went 12, 9, 6, 9, 11, 8, 5, 4, 7, 10, 15, 19.5. To have these recent successive upticks that are cusping on 20 concerned me. So I schedule a scan. This time a PET scan. CT scans show presence of things and PET scans show metabolic activity.
What scan shows what when? Had I a PET back in September of 2011, I’d have seen the one major tumor and been able to avoid two surgeries whose anesthetics boiled my brain, the choly-sys and the ERCP. But you can’t PET everyone with a tummy ache, or you would approach living in a diagnostic chamber 24/7 searching for the culprit. Even if you find him, all you did was spend time searching for him. Many times finding him won’t help anyway. On the other hand, we all know of those who had they only got their info- scans, blood tests, whatever- just a bit sooner, they’d be here today. When to do what? No one knows!
I got the results of the January 7th PET. The PET part shows nothing lighting up but my bladder where the radioactive solution went after I drank it. My gut is dark- a good thing. The CT part showed nodules there not present four months earlier. They are in the left lung, evenly distributed, the largest being 1.1 cm.
Cancer markers rising and new, fast-growing objects in the lung raise the specter of metastatic cc cancer spread to lungs years ago but too small to be seen until just now. If that’s the case, my condition is ‘treatable’ but incurable, and time is relatively short. I could have a surgeon pluck out (needle or full resection) one of the bodies to see exactly what it is, but just how much I give up to get how much useful information is something I’m still evaluating as I write.
Right now I lean towards a scan in 2-3 months. If there are more lung spots and/or they are growing, I believe that will confirm metastatic cc, and I go Bucket right then at that point. I believe that I will have under a year with no treatment (from today), and I want to maximize the good time at the beginning so I have as much of it as possible.
How would you feel if a bullet racing toward your head were 1” away? You’d feel fine. At the moment. That may be me, just peachy for now but with certain irreversible doom nearing quickly. I just don’t know. The one thing I do know: I can easily do 10 superman pushups and 7 impossible 5 step pushups because I just did them, so for the moment I am strong and my body’s happy.
I have been drafting a cancer book based on my experience, and I hope to finish it before the cancer finishes me. Let’s see who wins the race.
Love to all,
Jeff
PS I just recall when I saw Master Wang for the first time in months, he rubbed over my left upper chest and said, “No good here.” He never referred to that area before. It’s where those left lung lesions are. Spooky.
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