Use of Xeloda and radiation after Whipple Procedure

scodaman · New User Joined: 23 Apr 2006 Posts: 5

Dear Marty,
Sorry to hear you are having so many problems following your whipples,it seems to make a huge difference if you have it done for a malignancy-i expect having radiotherapy could worsen scar tissue and cause more pain.I hope your scan goes well,it's not always a good idea to look at statistics--keep optimistic.I was really annoyed to have such major surgery which wasn't really needed but I am starting to think I have been very lucky.None of us know what the future holds ,make sure you get good pain control while you wait for your results--thinking of you.
scodaman(woman actualy)

freeio

The results from the PET/CT scan were inconclusive. They saw nothing unusual, which I take as an indication that the continuing pain is due to what has been done in the past, and not due to a new malignancy.

Dr. Vickers stated that he does not know the cause of the pain. It appears to be a not uncommon side effect of pancreatic cancer treatment. At our last appointment, he suggested that a celiac block might be appropriate, so that the pain pathway would be closed, and I might not have to take the continuous pain medication which I am taking now. In the meantime, he prescribed a more potent set of pain-killers which has made it possible to sleep through the night. The next appointment with Dr. Vickers at Kirklin Clinic (Birmingham, AL) is Monday May 8th.

One issue is that the pain medication makes it illegal to drive. It was pointed out to me that if I were caught with this in my system, it would result in a felony charge. While this is inconvenient, it was enough to convince my employer to allow me to work from home.

Cheers!

Marty
_________________
-------------------------------------------------
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

scodaman · New User Joined: 23 Apr 2006 Posts: 5

Hi Marty,
Really pleased to hear of your good result from your scan-hope you are feeling much better now your pain is more controlled.
Do you have any problems with anaemia?I have to take iron and b12 injections,in fact so far most of my problems have been related to my partial-gastrectomy,bile+acid reflux are a nuicance but controlled fairly well with medication. you mentioned on an earlier posting you had your pancreatic stent removed-do you know if they always put a stent in?I had a biliary stent before surgery but don't know if I have a pancreatic one.
all the best,
scodaman

matynne · Regular Joined: 14 Dec 2005 Posts: 23

Hi,

Pain from Post-pancreatic treatment is common. Keep us updated on the pain and what treatment you took for the same.
_________________
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freeio · Posted: Mon Jun 19, 2006 12:38 pm Post subject: It's back

I was notified by the oncologist's office on Friday that the cancer is back. Dr. Posey will be calling me this week to schedule the next round of chemo (gemcitabine).

This spring has been a hard and painful time. In February, I noticed symptoms that something had changed. There was low level back pain, and abdominal pain after eating. It took very little food to make it feel terribly bloated, and it hurt for hours thereafter. Dr Vickers thought that it was a sign of chronic pancreatitis, and hospitalized me for a week while they diagnosed it, and then removed a stent from my pancreas. It didn't help. Things just kept getting worse.

The CA19-9 marker was increasing every time it was measured. Although the numbers were not terribly high, Dr. Vickers (the gastroenterologist) referred me back to Dr. Posey (the oncologist). His thought was that the back pain was not caused by a back issue, but rather was pancreatic pain. They put me through several CT scans through the spring, and there was a bit of change between them, but nothing really obvious.

In the last few weeks, things got more interesting. Dr. Vickers notified us (by mail) that he is leaving UAB hospital and will not be seeing us any more. Neither was there any referral to anyone else. This is not easy to deal with. As about his last act. Dr. Vickers got me approved (by BCBS) for a PET scan.

The PET scan was not particularly helpful. In the first place, it hurt terribly, because by now the back pain is so bad that I cannot lie down at all without great stabbing pain. Being strapped down to the table for 40 minutes was just awful. But then the results were strange, too. The only unusual uptake detected by the the PET scan was in the psoas muscles. That made sense only in that because of the terrible pain, I may have been flexing that muscle during the test. So Dr. Posey scheduled me for yet another CT scan.

About this time, I had a regular appointment with Dr Winter Wilson (my local gastroenterologist). I explained the whole sequence to him, and since UAB had not sent him a single result of any test or anything else in more than a year (in spite of having suthorized and requested it repeatedly) he was working mostly in the dark. After my description of the back pain, he scheuled a bone scan, saying that while it wasn't his specialty, the results could potentially tell us some things concerning whether this was a back issue or not.

The bone scan was not difficult (other than having to lie perfectly still on my back again) and the results were fascinating. No other diagnostic had been very helpful, but there on the screen the technician pointed to a very bright object on the screen: The L1 and L2 vertebrae glowed four times as brightly as anything else on the screen. She said, "That's where it hurts, isn't it?" She was right, of course. But since she is a technician and not a doctor, that was all she could say.

So now all of the doctors have all of the recent test results. No one is being particularly forthcoming with understandable words, beyond that they are recommending more rounds of chemo. Seeing that bone scan leads me to believe that what I was seeing is a sign of metastasis. It would seem that no longer am I dealing with self contained cholangiocarcinoma, but rather that it is spreading aggressively. It has taken four months from first reporting the changes to seeing someting which can be seen and measured with the instrumentation. It also looks to me that this may have been four months too many.

This is a painful process. I recall that this is exactly how my mother died 25 years ago. The initial cancer was treatable, but was the wedge which allowed in the several kinds of cancer which followed, and which finally took her life, after more than a year of fighting it. She died after a year of medical torture. And now I am looking at the same probable sequence of events.

It makes me wonder what is the best course of treatemnt to follow. Dr. Wilson warned me almost two years ago that I should take control of my treatment, and make the decisions as to what outcomes are acceptable. I have choices to make. I see the end approaching quickly, but I will not go passively.
_________________
-------------------------------------------------
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

rechargeable

Marty,

I'm very sorry to read such difficult news. My father, who had a total pancreatectomy in July 2005 and subsequent chemo and radiation for many months, was diagnosed two weeks ago with a major recurrence. A week ago he began a new round of chemo (bi-weekly oxaliplatin infusions along with Xeloda orally) that we hope will shrink the tumors and make him feel better for a reasonable time to come. If he can tolerate the oxaliplatin, they'll soon include Avastin in the infusions, which is a drug that interferes with the tumor blood supply.

From all you've written, you seem to have continuously approached this terrible situation with strength and wisdom. I'm sure whichever choices you make will be right. Please keep us updated.

freeio · Posted: Thu Jun 22, 2006 2:43 pm Post subject: It has come to my attention...

I spoke with Dr. Posey (the oncologist) on June 20th. I was told that no one CT scan was clear as to what had happened, but that looking at the series of them from the last several months shows that the major part of a tumor is growing in in front of the left psoas muscle, but extends all the way across to the other side. Furthermore, the bone scan showed what at first was diagnosed as degeneration in the L4 and L5/S1 area of the spine, but which is being regarded as potentially also cancerous. I asked him if there was a specific name for this, and he said that it is still pancreatic cancer.

The treatment with gemcitabine will begin on June 26th, on a bi-weekly basis. Dr. Posey stated that he hopes to arrest or slow the growth. If he is hopeful about this, he most certianly did not show it.

What I am about to say may offend some readers. As a convinced Christian, I refuse to worry about this matter. I am dealing with a potentially fatal body failure, but that is all it is. It is not as if it were something serious, like a moral failing. I trust that the future will be better, though I am passing through some difficult times on the way.
_________________
-------------------------------------------------
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

scodaman · New User Joined: 23 Apr 2006 Posts: 5

sorry to hear so many people don't do very well after a whipples,it makes me wonder if I should really be writing to this page.It will be 8 years next month since I had mine(benign).I keep quite well so far with medication-next check up next month when I get the result of my bone scan +have bloods checked.My best wishes to everyone-keep optimistic.

freeio

IV chemo treatments began on June 26th – 1.5 grams of Gemsar diluted in saline solution, pumped in over 90 minutes' time. The schedule is for every two weeks, so it happened again on July 10th. The infusion lab is a cold place (quite literally, it must be near or below 60 F all the time) with a dozen recliners. The technician sits me down, hooks up the IV, waits for the pharmacy to deliver the Gemsar, and then hooks up the pump, with the flow rate computed to deliver the fine poison at the proper rate to take 90 minutes. I sleep if I can, since there is nothing better to do, although it is not easy with the indoctrination video tape going loudly in the background (“If you have other symptoms, call your nurse or doctor...”) The Gemsar stings a bit, and this last time the technician diluted it a bit further with more saline solution, which helped. The pharmacy bags of liquid come straight out of the refrigerator, and the liquid feels like ice in my veins.

There are few new symptoms that I can attribute to the chemo. The most obvious symptom is that the gastric disturbance got worse. After the Whipple procedure, while taking major pain medication, the intestines are already slowed to a crawl. (Opiates greatly slow smooth muscle function, and so with the opiates comes constipation). To solve that Dr. Wilson, the GI Doctor, has me on 17 grams of Glycolax (Polytehylene Glycol 3350) twice a day. It helps a bit, and gets the motility somewhere above zero. Add in the Gemsar, and it slows down things even more. The doctors urge me to stop losing weight, but it is very hard when nothing moves to make room for more food.

The pain is increasing and spreading. I spoke with Jill (Dr. Posey's nurse) on July 10th, and she asked if now that I was on chemo the pain were decreasing, and I told her that if anything the pain is accelerating. She seemed surprised, and offered more drugs to combat the pain. I am riding a fine line here, in that I am taking major pain medication, but only enough to keep the pain sort of at bay, so that I can remain lucid throughout the treatment. During my stay at UAB hospital in October of 2004, they drugged me to the level that I could not think or talk normally, and I had to ask them to turn it way down. I do not like pain at all, but I choose to medicate it minimally so that can still be in my right mind. So I am taking three different types of medication, each with its own issues: Celebrex, 200mg, once a day, an anti-inflammatory which is controversial because it can cause heart problems; Oxycodone, 20mg, three times a day, an opiate which is terribly addictive; and Darvocet, 650mg, as required for breakthrough pain. I do not like any of them. They all are bad stuff. But it is hard to get to the terminal phase of life where the pain is so bad at times that I really do not care to live any further, and to end up relying on the medication to make it possible to even consider continuing with the other treatment.

So why do I continue my treatment? I continue because my wife and my friends do not want me to leave, and would prefer that I stick around as long as I can. For them I will do this. Life is with people, and my life is not just my own. “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

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