Hi all - Never thought I'd be here

Adagio7780

Good results today at Duke. The tumors in the pancreas and pelvis are a bit smaller than they were two months ago, and the tumor marker CA19-9 is down, from 10,800 to 1,600. The shrinkage of the tumors indicates that I am responding to the treatments, although not enough to be moved from the 'Stable' to the 'Responsive' group. I will have another CT Scan in two months. I have unfortunately become anemic, and get really tired after only a couple of hours of any kind of activity. Because treating the anemia would also strengthen the cancer, this is a condition I will have to live with unless it gets much worse. The doctor tells me that it is very difficult to keep from losing weight with this disease, and the fact that I have put on a few pounds gives him as much or more encouragement than all the test results. He obviously doesn't know how easily my family can pack on the lb's.

So the treatment seems to be doing what was both hoped for and expected. I am hopeful that I can get off the Gemzar after a few more months and then enjoy a period of relatively good health, during which time a miracle cure will come along and cure us all. Wink

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Man tracht, Got lacht (Man plans, God laughs)

audib · Regular Joined: 29 Jun 2007 Posts: 36

good news! Hope you have continued good results. Did the doctor say they might attempt surgery if the tumor shrinks enough?

Adagio7780

Thanks, audib. Surgery seems like a long shot for me because the cancer has metastasized to the peritoneal wall, where there are dozens of tumors now. There is also a pretty significant tumor in my pelvis. Nonetheless, when my wife asked your question directly to the surgeon a couple of months ago, he said, "It's possible." So I am looking forward to more shrinkage over the next two cycles.
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Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

Hi Floyd,

just wondering how you're doing these days and how you're tolerating Gemzar.
My mom is on a similar Gemzar regiment as you, receiving a 1600 mg dose once a week. She has so far received three, and the doctor has yet to decide what to do next week based on the US and tumor markers that he'll be checking. He might decide to skip an off week and just administer 7 back to back dosages of Gemzar, or just discontinue it altogether.
Her weekly blood test yesterday showed a decline in bilirubin and dr believes that the pressure on intrahepatic bile ducts that caused the jaundice and elevated bilirubin might no longer be there.
However, her liver enzymes continue to rise, so it's really hard to guess at this point.
Your description of gemzar side effects has helped my mom a lot, as I told her what to expect (her doctor told her that gemzar has no side effects Rolling Eyes

) and so far she is handling it pretty well.
Her worst times are usually 30-48 hours after the chemo, after that she seems to recover fast. Her appetite is very good, though she has lost 4 pounds so far. I blame it on chemo, rather than the disease.

Hope your treatment continues to show progress and that you'll be moved into the 'Responsive group' at your next check up.
Stay strong and keep us posted!

Adagio7780

Hi LucyInTheSky and others,

Thanks for keeping check on me - I visit the board often and try to contribute when I feel I have something positive. I am still on my regimen of 3 wks on/1 off of Gemzar and a study drug (AMG655 or placebo) which is given on the first and third weeks. The side effects have been reliable since the beginning, weakness and fever for about three days after treatment. I am just finishing up my third cycle and will start number four May 5. Since my primary tumor is mid-body pancreas, I fortunately do not have the bile duct/jaundice issues. My hemoglobin is low at 10.4, resulting in my having very little stamina. My wife and I used to hike a few miles on our camping trips, but that is out of the question for now. This being the weekend at the end of my 'skip week', we just got back from a trip to the NC mountains in our old motorhome. Just plugging it in and hooking up the water, etc left me very winded, but we had a great time nevertheless. Next scan is due at the start of cycle five, one month from now.

Thanks for all the support, thoughts, and prayers, and I am praying for each of you here.

Best,
Floyd
_________________
Man tracht, Got lacht (Man plans, God laughs)

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

A7780:
Been away for awhile, but just wanted to wish you well. Your strength, optimism & bravery has to be inspiration to others. Keep it going and don't forget to have fun at every oppt.

Adagio7780

Just to let you know, wannaknow, I think about your advice often. On my skip week, I not only went on the camping trip, but took a country motorcycle ride with a good friend, and finagled a trip for me and my two grown sons through a private car collection owned by one of the premier names in NASCAR. ($15 MILLION worth of collector cars!) An old friend emailed me and asked me if I suffered from any depression. Here is part of my response:

"Not depressed but very sad at times and I certainly shed a tear on occasion. I have much to be thankful for and consider myself extraordinarily fortunate. I have lived my life in the best region of the best country on this earth, during fantastic times. Let me tell you about my sons, my father. I still have the love of a small group of faithful (if gullible) women. My cancer was caught early enough that I may live a few years instead of a few months.

I am not happy about my situation, and I hate Tuesdays. I wanted to see my wife retire and tend her flowers and visit her sisters. To travel more in our old coach. To meet my grandchildren.

So I am sad at times but I do not think depressed, and I will get what I can out of each day. Today's high point so far has been the great therapy I got from answering your email. I am so glad you wrote!"

I hope you are well, wannaknow, and thank you for your posts.
_________________
Man tracht, Got lacht (Man plans, God laughs)

wannaknow · Senior User Joined: 19 Oct 2007 Posts: 118

A7780:
That's the spirit - Rock On

Grab those moments

floatinggal · New User Joined: 14 May 2009 Posts: 1

Dear Adagio,

I wish you so much luck and strength in the times to come.

I just wanted to know if you have tried any natural remedies. I have done lots of research on them and really believe in their potencies. Pharamceutical companies often like to play them down as they can't be patented.

I am thinking about Coenzyme q10, Wheatgrass, and other immune boots: Vitamin C, E, Echinicea, Zinc, Selenium.

I really think they can't help, and it is worth doing some research into CQ10.

Anyway, best of luck to you and all those out there dealing with this.

Adagio7780

Hi everyone,

I'm happy to report that the results of the June 1st CT Scan are quite good. While there has been no significant change in the tumor in the pancreas, there is a marked decrease in size of the tumor in my pelvis. Also, the many small tumors on the abdominal wall seemed to have shrunk. These tumors cannot be seen on the CT Scan, but leave a 'scalloping' on the liver which can be detected, and there is less of that since my last scan two months ago. Also, the tumor markers (CA19-9) have decreased to 1000 from 1600 (two months ago) and 8600 (four months ago). All of this indicates that the chemo is having a positive effect, and treatment will continue as long as that is the case. It is expected that the cancer will eventually become resistant to the chemo, and while the doctors are unable to predict when that might happen, the range we heard was from a few months to two years or more. When the current treatment is no longer beneficial, other treatments options will be evaluated.

The good doctor did give the ok for me to skip an entire cycle (one month) any time I want and take a vacation or whatever. I think I will make that decision after my next scan around the first of August, with the idea of taking off in my old motorhome for the month of September. Any experiences skipping a cycle will be read with great interest!

Thanks for all the kind words, thoughts, and prayers.
_________________
Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

Thanks for the update, and with such great news Adagio!

I read that even a CA19-9 decrease of only 20% after 8 weeks of treatment means a significant improvement of life expectancy, so I've been pulling out my calculator every time my mom's blood results come in.

Are you still participating in the trial as well?
It is good to know that you can safely take a month of vacation, that means your doctor is very confident in the treatment you're on.

All the best, and keep us posted Smile

Adagio7780

LucyInTheSky, I am still in the trial. It is closed to new patients now and we hope to start getting some feedback soon. How is your mom?
_________________
Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

My mom is doing reasonably well, thank you for asking.
As I previously mentioned, she lives in Europe, but we talk several times a day.
Reading your posts has helped me a lot in preparing mom for what to expect in terms of treatment and side effects of Gemzar as well as the initial results. For that I am very thankful Smile

So far she has been feeling pretty much the same as you after receiving the chemo, for the first 2-3 days, then it would slowly get better.
Her one cycle lasts seven weeks, with one week off. It has been eight weeks since she started, and this is her first week off. She is in high spirits and is planning on doing some spring cleaning.
Mom's doctors didn't exactly tell her how serious this disease is and what the life expectancy is. I think that works out well for my mom, although I know everyone is different. She is mostly in good spirits, willing to try different supplements, as long as they're approved by her oncologist of course. I am worried that she would just give up fighting if she knew what the statistics say since unlike me, she believes in statistics Wink

I admire you for your strength and good spirits. Please keep us posted when you get a chance, in the meantime, I hope you have a great time sailing, biking, camping, traveling and enjoying life!

Adagio7780

Hi all, just a quick update on my status.

My wife and I spent another refreshing couple of days at Duke last week, and the results of the latest scan are pretty good overall. The pancreas tumor is unchanged in size, but no growth is considered a good thing. Better if it would shrink, of course. The tumor marker blood test continues to show improvement. In January it was 10800 and has steadily decreased to 607 today. On the down side, my hemoglobin is 10.4, which is pretty low to be starting a new cycle of treatment. We would like to see this in the mid-11's; normal is 13+. Also, urinalysis shows blood in my urine, although not enough to be visible at this time. The doctor says this is a fairly common side effect of the chemo (20%) and no real cause for concern.

I will take two more cycles of treatments (Gemzar + AMG655 study drug, 3wks on/1 off) and then we are taking off September 8 for a two week vacation to Mt Rushmore, Yellowstone, Grand Tetons, and the Redwood National Forest. My next scan is due late September.

Continued good luck to everyone. I am now eight months out from initial stage 4 diagnosis.
_________________
Man tracht, Got lacht (Man plans, God laughs)

LucyInTheSky · Regular Joined: 20 Jan 2009 Posts: 14

Thanks for the update, I was wondering how you've been. Smile

I'm very happy to read about your continued progress and well being.

How are you feeling otherwise? My mom complains a lot about fatigue, weakness and lack of appetite lately. Her CA19-9 levels continue to drop as well, her latest CA19-9 came back at 3,514 which is a far cry from 36,000 she started out with.

Stay strong and keep us posted!

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