Stage IVPancreatic Cancer - from the patient's point of view

freeio

It is interesting to sit here, detached from the whole process, and watch the cancer take over my body. Dr. Posey (the oncologist) calls is “pancreatic cancer” and since that is where it all started, I guess he is right. He doesn't say much, though, and it is hard to accurately gauge what he suspects will happen next. The doctoral silence is, in itself, a bit unsettling. I Google for what answers there are, and find that perhaps one reason he doesn't say much is that the on-line descriptions show that what I have is Stage IV pancreatic cancer, where it has spread into the periteneal cavity, and spine, among other places. The pancreas is not involved right now. Maybe the previous round of radiation and chemo took care of that. Nevertheless, he calls it pancreatic cancer, since that is where it all started.

The gemcitabine may be helping for all I know, but from here, inside my own body, it is hard to tell. The pressure in my abdomen continues to increase, and the pain sometimes is sufficient to stop me entirely. There is pain medication I take all the time, and then there is a second level of pain medication which I take for “break-through pain.” It doesn't matter much, though. The pain is there, and keeps accelerating. It slows me down quite a bit, now. The medical professionals would prescribe more potent pain medication if I asked, but I am afraid of it. I want to keep what mental ability I still have, and the current set of pain medications are hard enough to deal with in that regard.

My expectation now is that I will almost certainly not make it until the new year. It is hard to tell how long I still have, but since the cancer is already well-spread and is progressing noticeably, I have to think that there is not long left. I have three friends right now who are in the same position. Tom Sachs in now being treated by hospice care, and Sam and Louise Chandler are both still taking big rounds of chemo. It hurts as badly to see them hurt as it does to hurt myself. They have fought this beast bravely, and now it is winning. Well, cancer's victory is in vain, because we all have a Certain Hope, and fully expect to see each other in Heaven shortly. Being a Christian is a good thing – we know the future is better, even as we suffer here. He is faithful, so we need not worry about our future.

My beloved Monica stands by me and is a tower of strength in my presence. I know this hurts her, and that she cannot let on, so that she can help me through this. May the Lord bless her mightily. She is wonderful. We have gone through all of the planning that one can. The will is up to date, all of the important documents have been located, and the regular and medical power of attorney documents are all properly signed. I am reminded of II Kings 20:1, where Hezekiah, the king of Judah, is told my the prophet Isaiah, “Thus says the Lord, 'Set your house in order, for you shall die and not live.'” I have a small and uncertain amount of time with which to get things in order, and this I will do. I will not do as Hezekiah, who asked for a longer life, only to have it granted and then to squander it consorting with evil Ahab and Jezebel. What the Lord has decided is the right thing, and I most willingly accept it.

It is interesting to consider that the mortality rate in the United States is exactly 100%. It could even be said in jest that we have spread this terrible plague all over the world, since now the worldwide mortality rate is just as high as ours is. So what is my point? It is this: we know that our time here on Earth is limited, and we must accomplish whatever we choose to do within that limited time period. There is no going back, and there is no avoiding this reality. So make the most of what time you have, since your time will also come. I know I will. “I have my responsibilities, you know!”
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 12

thank you. your words are reaching.

4VGA · Regular Joined: 31 Jul 2006 Posts: 13

[b]HOPE ALL IS WELL WITH YOU I LOST MY FATHER TO THIS CANCER IN 05 HE ALSO USED UAB....I AM IN THE BHAM AREA AND I WORK WITH PANCAN HAVE YOU HEARD OF IT (PANCREATIC CANCER ACTION NETWORK).ORG LET ME KNOW IF I CAN HELP[/b]

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

Your strength and courage through this awful disease is beyond words. I lost my mom in October 2005. I wish that someone can find a way of detecting this type of cancer in its early stages so that there would be a greater chance of survival. I wish we can just find a cure to cancer, and all those other incurable illnesses that are taking away so many precious lives.

My dream is that we all live to 100 and at that time, we sleep the sleep of peace. I figure, by the time we're 100 years old, our loved ones would pretty much be sick of us by then (hahaha).

So tired of hurting...so tired of being sad...so tired of crying. Someone, please find a cure to cancer!

Mitz · New User Joined: 05 Aug 2006 Posts: 3

Thank you for your patient's point of view. We've been reading your posts for a couple of months now to find out what is ahead of us. My husband had a Whipple on 7/7/06 so he is still recoveirng. He has lost 54 lbs. since June 1. He is still unable to keep most solids on his stomach - already has constant back pain and is on hydromorphone. We too use UAB - Dr. Heslin. (We were probably in the hospital at UAB at the same time in June.) Dr. Heslin has yet to refer us to an oncologist, but I think it might be Dr. Posey. They have yet to reach a conclusion if the tumor was ampullary (bile duct) or pancriatic - path says pancriatic yet Heslin says ampullary. From what the Internet tell us, he is probably already in stage III if ampullary, but we can't get a doc to confirm that. (Why are they so secretive with our lives?) We visit Heslin on 8/10 and will push for answers and an oncologist. I had breast cancer last year so we could use my oncologist, but Heslin says he is not best for this type cancer. We'll see.

Thank you for your openness and telling us what to expect. Your strength and courage are amazing. I have found this openness no where else. Your beloved Monica must be so strong - I know I went through this for myself much easier than watching someone I love go through it. Yes, He is faithful and He will take away all this pain.

4VGA · Regular Joined: 31 Jul 2006 Posts: 13

WHEN YOU GO TO THE DOC ON 8/1O DEMAND ANSWERS MY FATHER WENT THERE AND GOT THE RUN AROUND WE TOOK ELSE WHERE
STAY STRONG....ALSO HAVE YOU HEARED OF PANCAN
I AM IN BIRMINGHAM AREA AND I WORK WITH THEM

Mitz · New User Joined: 05 Aug 2006 Posts: 3

We did as you suggested and got answers - we really didn't have to press hard for answers this visit. We will see Dr. Posey soon, Then we can get more answers to help make the decision about treatment or not. Thanks for advice and prayers

freeio

Today the Lord granted me another day. I am pleased to wake up in the morning, and be able to get up and serve Him. If He is happy, I am happy. So be it.

Today was largely spent at Kirklin Clinic, In Birmingham, Alabama. Monica and I left the house at about 5:30 a.m. for the long drive, and arrived at about 7:30 a.m. So we made it there on time. First, there was a blood test, and then an injection of morphine to help control the pain I would feel being supine for the CT scan. Next came the CT scan, and then after a while, we got to see Dr. Posey, the oncologist. After that, we stopped for lunch, and drove back to Guntersville, arriving at about 3:30 p.m. Things went reasonably quickly, as compared to some other days.

The news from the blood test and the CT scan was, once again, not pleasant. The CA19-9 blood marker continues to rise (up ten points this time to 76) which would seem to indicate that the tumor activity is continuing to increase. Furthermore, the CT scan showed some tumor progression, and that the tumor is putting increasing compression on the inferior vena cava and the renal vein. These have life-threatening potential all their own. Also, for the first time, the CT scan showed a specific sclerotic lesion. This is the first time that metastatic bone involvement has been detected by the CT scan. The lymph nodes in this periteneal area are considerably enlarged, as well.

I did not ask the doctor to give me a positive time scale progression, and where I am on it, because this is as much a matter of statistics as anything else. He doesn't know how my particular case will work out, and we all know that. Having said that, the need for continuing treatment to slow the growth of the tumors is very important. As long I continue to tolerate it, he intends to keep me on Gemcitabine-based chemotherapy. He also mentioned the possibility of high-dose radiation aimed at those specific lymph nodes, to see if it will not reduce the back pain. Because of the course of radiation I had in 2003-2004, he indicated that more radiation in the same area may not be allowable.

Because of the fact that chemotherapy will continue, on Monday August 21st I will go in very early in the morning for an out-patient surgery, to have the surgeons install a “port.” The port will eliminate most of the horridness involved in hooking up IVs and drawing blood. As long as the chemotherapy is planned to continue indefinitely, the installation of a port makes good sense.

What is the significance of all of this? Although the doctor does not dwell on the negatives, this is definitely a downhill course. Nowhere do I hear any words concerning a possible cure or remission. The treatments are strictly to give a bit more time, and perhaps a bit more livability during what time I have left. So I will go forth and live the remaining bit of life as “me” and do it with all of the joy I can stand. I have been so very blessed. Now is the time to end well.
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

freeio · Posted: Thu Jan 04, 2007 7:42 pm Post subject: A sudden improvement!

I have a brief update to list here.

Things continued downhill through September and October. They continued to give me 1.8 grams of gemcitabine every two weeks (chemo) and other than that, there was no treatment. The pain of trying to lie down was outrageous. In mid-October, the pain began to dissipate, and by October 30th, 2006, when I went for my CT scan at Kirklin Clinic (Birmingham, Alabama) I could lie down without hurting much. The CA19-9 tumor marker, which had been rising constantly, fell from 76 to 30, which is near the top of the normal range.

In the following weeks the pain disappeared entirely, and so I took myself off of the oxycontin (I had been taking 40 mg, twice a day). The withdrawal symptoms were awful, but after about five days they were gone and there was still no pain. Without the pain medication I have felt much, much better.

Dr. James Posey (my oncologist at Kirklin Clinic) calls this entire sequence of events “highly atypical.” So I would guess from his statement that this does not happen very often. My last chemo treatment was at the end of November. They had a hard time deciding whether to continue or not, and in the end decided to let it lapse for a while.

The next appointment with Dr. Posey is at the end of January, assuming that the insurance company will approve the CT scan by then. Perhaps after that we will better know what has happened. In the meantime, I am so very glad to have the pain gone, without the pain medication, and without the continuing chemo to have my blood counts back to normal.

See my cancer blog, listed below, for full details.
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

freeio · Posted: Wed Feb 07, 2007 4:26 pm Post subject: February 7 update

I had my latest CT scan on February 5, and yesterday evening Dr. Posey called back with the results of that and the blood tests. First of all, the CA19-9 pancreatic tumor marker is up to 94, which is higher than it was ever seen last year (it had topped out at 76 in August). The CT scan showed Mesenteric Adenopathy involving the Omentum. As he explained it, there are a couple of enlarged lymph nodes there, which seem to indicate a secondary lymphoma (secondary because this is the spread of pancreatic cancer, and not lymphoma). In order to combat this, he is prescribing at least twelve weeks of additional chemotherapy, using the same agent (gemcitabine) which was used the last time. I tolerate it well, and it seems to work. The bi-weekly chemo infusions will recommence as soon at they can be scheduled.

The peritoneal tumor (soft tissue) seems unchanged from June, and the sclerotic lesion (bone cancer) of the right illium (pelvis) has not changed either. There is, however, an indication of blood clots in this area, and so he is prescribing a blood thinner called Arixtra. I will have to give myself daily injections of this. We checked with Buddy Bunch, our favorite pharmacist, and he indicated that Arixtra is one of those really new drugs ($100 per injection), and that he has never had anyone need it before, so it is on order.

Dr. Posey noted that there is evidence of Fibrosis, which is a common side effect of the large doses of radiation and chemotherapy I have had during the cancer treatment. This could be the cause of some of the pain I have had, because it ties things together which are not usually attached, and thus makes it so that internal parts tug on one another, causing pain.

So now I have gone eleven weeks without chemotherapy, and it appears that the gemcitabine was holding some things at bay, which have begun to grow as the chemotherapy was stopped. So now the treatments will continue, and we shall see what happens.

I have no reason to complain. For someone who has been dealing with stage IV pancreatic adenocarcinoma, I am doing remarkably well.
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

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