iowagirl

Diane…way to ace the scan exam!!! Seriously, 20% shrinkage is a really great response for any treatment of this cancer and in a short time. Good luck in October……for another 20%+ gone as well.

Julie T.

Scott, Welcome and thanks for sharing your story. I see that you’re an electrical engineer. My husband is/was also an electrical engineer (retired last year) and thanks to his excellent benefits even as a retiree, insurance has been excellent as far as paying for things as well for my surgery and treatment. You and I are both very fortunate not to have to struggle with the bills, in addition to the cancer. It sounds like you have been battling cholitis for a very long time….and now this too. Yes, there is a connection between the two….which sure seems like a slap in the face, doesn’t it? One is bad enough. I’m so glad to hear that you are planning the 2nd opinion with MD Anderson. I always maintain that the more eyes and ears and brain cells looking at the details/facts of your case, the better. As Lainy said, Knowledge is very important to fight this “thing”. We’ll be here if you need us.

Julie T.

Carol, I’m so sorry to hear that your dad has passed. I know right now you are in a place somewhere between saddness so deep that you can’t believe you can bear it and relief that your dad is now free of this ugly cancer. It may be difficult to come back here, but as time goes on, if you find you need to talk, we are here for you. Prayers and Hugs,

Julie T.

Duke, Duke, Duke…leave it to you to reflect on everything with one more profound statement, like “looking for the light” and finding it here in everyone. There are those here who will carry your message forward, but none of us could do it with your clarity….cutting to the chase. I can’t begin to count the times you brought me back to earth and got me focused again during all that crap last year. You’ve always stressed what is important…..to keep the eye on the prize. And….even when you’re not at your fullest, you still say in few words what we all need to hear. My friend, go softly into the dark night….knowing the help you’ve given, the lives you’ve changed. I’m so proud and fortunate to have met you and call you my friend. We will see you again some day down the road…so until then, see ya later alligator. (Here’s where you say, “After while, crocodile.”) I’m going to be watching for another post from you, and hope you will feel well enough to write one. But, if you don’t, I’ll be watching for that lucky penny to show up at my feet one day…and I’ll know it is you telling me you’re okay.

Melinda A., …..you’re welcome. I think that I was just as relieved , as I knew you would be, to see some evidence that John’s BG numbers may be from the meds. Hope that is the answer.

Glad to hear that his doctor is reducing the diabetes meds.

As for the scans…the MRI contrast may still affect the kidneys….but it did sound like there were a couple ways around it. If they’d agree to do it…I’d personally go ahead with hemodialysis after the scan with contrast, just to be able to get the scans a little closer together and get better pictures. But, I don’t know how eager the docs would be to do that.

Meds are just plain weird…..in that sometimes, the side effects are bad enough to warrant some other action. I just spent another night of nightmares……which had suddenly started a number of years back. Quite by accident , when I was reading about one of the drugs I take for heart issues, I discovered that it can cause nightmares. I have to take the drug….but it sure makes for some long nights. You just never know what kind of side effects these drugs will have.

Julie T.

Melinda,

Suddenly something struck me and I decided to do some trolling on the web to see if my hunch might be right. Those drugs that John is taking ….one or all of them could be the cause of the low blood sugars. I forgot the “rule”….whenever there’s a new symptoms….it could be a side effect and look to what you are taking for drugs.

Remeron : ONe thing I read said it can reduce blood glucose levels and if you are also on another drug (I can’t read my writing), then diabetics should be closely monitored for blood sugar levels.

Zoloft: A Review
in peoplage age 60 + esp, but some younger, it was noted that those taking the drug for less than a month and also take Seroquel and have depression may have reduced blood sugar levels

Xanax: This depresses the central nervous system and as such, acts as an appetite suppressent and thus lower intake of food for some and could cause hypoglycermia if you continue to take diabetes medication or shots in the same amount as before. While this drug may not directly cause low blood sugar….it sounds like it sure could cause a reduction of appetite, which John was also battling, right?

There’s enough from what I saw on the web to make me think that John’s low blood sugar episodes may be caused by his medication. There’s a lot to read about those drugs and blood sugar levels and I just scratched the surface. One of the above also indicated it raises blood sugar…..so like a lot of things…it could have more than one side effect. It would be good if you did google searches for the three drugs since I’ve found the above….read for yourself. If it is one or all of the drugs…..and he needs these medications…I would suspect they tell you to just monitor BG very carefully and very often…maybe even setting an alarm in the night to wake up at least once to test his BG. I know I’d do that myself just to be sure I wasn’t getting into trouble and not waking up to know it. I’ve had a couple middle of the night lows in the lower 40s….and it’s really scary……I woke up ONLY because the sweat was pouring out of every pore in my body…running like a river down my face….my back …everywhere soaking wet. I thought that maybe this was my first and only hot flash….LOL……but then it struck me that maybe I shoiuld check my BG…and it was 42. I don’t think I’ve drunk juice so fast in my life!! ))))

Hope this gives you a little peace of mind. I know that I’d like to see a scan…..but in the meantime…..it looks like there’s some reason to think this is caused by one or more of those meds.

Kris…Thanks for the additional information. You are certainly at one of the big centers and one that deals with CC. As Lainy told you, that is where I had my surgery and ongoing followups.

First: Would you mind sharing the name of your oncologist and surgeon?
I was seen by Dr. Domingo, on fellowship in oncology….and as such, probably not the first line doctor I should have had….but my case was very clear cut once I was seen…surgery….everything with clean margins and no mets, so it is simple followup scans and labs with the adjuvant chemo I had here back at home. I came to really appreciate Dr. Domingo, who is extremely sharp and compassionate, an unusual combination in the medical field. However, his fellowship will be ending soon after my next set of scans in Nov, so I will be looking for another Mayo oncologist to follow my case.
There is a Dr. Gregory Gores there at Mayo who is extremely knowledgeable about CC and I would probably start there for myself as a possibility, though I suspect I would get one of his fellows under him with Dr. Gores overseeing everything. You might consider having your file looked at by Dr. Gores .
MD Anderson …..Yes…one of the best in CC…and there are 2 or 3 Drs there who specialize in CC….and one keeps coming up all the time. Somebody here help me…I can’t remember his name (chemo brain has attacked me again). From everything I hear, he is very open to consults and deals with trials as well.
St. Louis…..again…can’t remember the name of the hospital, but the Dr. is Dr. Chapman. While he has developed liver transplants for some patients who qualify (you and I don’t because we have intrahepatic)….he is another guy who really rocks when it comes to knowledge about CC and I think if you send your scans , etc to him, he will evaluate maybe without you going there.

BTW…..I live in Marion, Iowa, (connected to Cedar Rapids) and am just 3 hours from Rochester and probably about an hour and a half or so + from where you live if I have the location of your town right…….just south of the Twin Cities? We always joke about Marion/Cedar Rapids being the Twin Cities of Iowa. ))

Julie T.

Kris….I hope that someone else will be coming along soon to give you more info, but I will try to answer your questions. Other board members…feel free to add anything to this or correct me if I am wrong.

Stage IV B means that the cancer has spread from the localized area of your liver to a more distant area of your body…and in your case…the lymph nodes of your esophagus area.

Palliative intent chemotherapy means that they are doing chemo to lessen the symptoms of the cancer and hopefully slow it down, but they don’t feel it is stopable or curable.

What else to ask your oncologist….I’m not sure…but someone else may come on board with some insight for you.

If I saw those three words, “Paliative intent chemotherapy,” I think I’d be running fast for 2nd, 3rd, 4th or more opinions.

Has your oncologist not mentioned trying to get into a clinical trial since surgery could not be done and chemo thus far is showing progression? Why not? THAT is one question I would be asking for sure.

If you don’t mind sharing…where are you being treated? One of the really, very, very important things about treating this cancer is finding a doctor and a big medical center where they are very familiar with this rare cancer and regularly treat it. There are many good hospitals….and great doctors….but they don’t necessarily have the expertise you need.

Julie T….aka Iowa Girl