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Pancreatic cancer

Alhad123
Posts: 4
Joined: Feb 2014

I am suffering from stage 4 pancreatic cancer with cancer spread to liver and intestine. Whipple surgery was ruled out. However FOLFIRINOX chemo has brought down my chemo marker down from 18000 to 140. I am felling lot better. I know survival rate is 1% in a year. However I would like to know if anybody has survived beyond this span. If so, how they did it. Please help me.

amora
Posts: 1
Joined: Mar 2014

My husband was told in October 2012 that he had pancreatic cancer IV that spread to his liver. First treatment began on November 1, 2012-- flourouracil (Adrucil) IV_ 860 mg in first delivery and later in day 5,100 mg in second delivery, Irinotecan (Camptosar) IV_ 380 mg, leucovorin (Wellcovorin) IV_860 mg, exaliplatin (Eloxatin) IV 180 mg. Treatments were every two weeks until july 2013. Then it was every three weeks and gradual drop in some of the meds--flourouracil IV_was the same, irinotecan _260 mg, leucovorin IV_was same, oxaliplatin IV_100mg. Oncologists administers and adjusts each time according to need with over 20 other meds to counter the side effects. When husband began treatment he weighed in at 199 lbs. His cancer marker dropped to 18 in September 2013. Then it began to rise in December 2013 to 77. After MRI it was discovered the cancer spead to lymph node behind pancreas and the node doubled in size. Orinially he had a pancreatic tumor the size of 5"x 4"'x2" that shrunk to 2"x1/2" within nine months and originally had 13 spots on liver where there are only 3 in milimeters sizes now. last MRI has shown the pancreatic tumor and liver tumors have not grown, but have not shrunk any more. They also found several small tumors on lungs that he will have a biopsy on in a few weeks because they do not look like the tumors in pancreas becasue they are long and narrow. Because the original chemo did not effect the node and lungs, Abraxane with gemsor was given to replace the first chemo. He has had difficulty with high fevers and fatigue with this new chemo and it was stopped for three weeks although the cancer marker went back to normal after only three treatments in three weeks. Other patients on abraxane have had no problem. Abraxane has only been aproved for pancreatic cancer in November 2013 and is a human blood deriitve. My husband has type B blood. Just maybe his blood type has an adverse effect. He will continue treatment on March 10. Cancer surgeon is considering delivering chemo or radiation seeds directly to organs of concern under surgery. Oncologists is also searching for clinical trial in immunology/biological cancer treatment that has no side effects since it attacks only the cancer cells. We may need to travel, but we do have RV to use. 

Some cancer patients have left other centers in US to come here for treatment. Bon Secours Cancer Institute also accepts Medicare insurance. Cancer Centers of America do not. There are some patients from Canada and other states. If out of state, it only costs $20 per night for private room with bathroom for patient and guest at their center. Check out Dr. Abhishek and Dr. Avital, head of center, on internet.  

Someone asked my husband, "If you had unlimited back account, where would you go for chemo?" He answered, "God sent me here. Why would I change? I would only buy a house closer to the center. We travel 72 miles each way. The first doctor we went to told my husband in October 2012 that he had only 3 months to live. We were called by these doctors for a consultation. When they offered to take my husband as a patient they told him it would be a rough journey. My husband said, "Christ gave me a door to go through and carry my cross. If I do not go through that door it would be as if i committed suicide. Maybe i can help a child to have a better life with my journey." One doctor said to my husband that my husband has the faith and he has the science. The surgeon said, " I have the skills from God." Both doctors believe it is the faith that keeps my husband going. One is even doing research on faith in cancer treatment. Also my husband had heart rate problems way before he was diagnosed with cancer. This past June he had a heartpace maker put in. Years ago it would have been unheard of to have a pacemaker inserted on a phase IV cancer patient. Science is staying one step ahead of my husband's cancer. My husband eats well usually about 5 days after treatment until next treatmetn. He only lost only 8 pounds since October 2012. But then I do feed him what I deem to be healthy and what he enjoys. He takes vitamins at home and drinks whey protien drinks at least once a day between meals. He has also been able to keep his glucose near normal since his damaged pancreas has determined he is a diabetic 1.  Take each day and enjoy the best you can. Anyone can be that one percent!!!! More and more are joining to make it much higher than 1%. I can name four that I met at the infusion center who are way beyond the first year with pancreatic cancer who came to the center within a month of my husband. My husband was the first patient at the center which began in September 2012.
 
This is the first time I have posted on this site. I have no idea where to go to correct spelling. So please forgive spelling. God Bless!
Alhad123
Posts: 4
Joined: Feb 2014

Thank you for your reply. One drug is taken out of Filfifonox since my platelets would drop low. Now my chemo is every fourth week. My chemo marker CA19-9 went down from 18000 to 125 and now climbed back to 340. I don't know if it means to change the treatment. My pet scan is scheduled for this Tuesday. Then we will know more. My oncologist has give me permission to go to India for between two chemo as I feel great. Then end of May I will go to Chicago for my daughter's graduation in medicine. After that my oncologist will change medication. 

Visited Father Pio's church in PA. He was known to cure cancer and other life threatening diseases. Prayer and hope are best tools to fight cancer. 

lcouture's picture
lcouture
Posts: 1
Joined: Jun 2014

Bless your heart, 

 

I would like to read more updates from you. My husband Pierre was diagnosed April 24, 2014. Pancreatic cancer, no metastasis so far but tumor 5 inches in size. Started chemo on May 23, 2014 with Folfirinox (one day at hospital, +1 day 1/2 with bottle resembling nursing bottle) + Oxaliplatin, Irinotecan, Leucovorin and 5-Fluorouracil.  Treatment will spread over 6 months.

For the time being, the worst ill effects for Pierre were felt during digestion and elimination processes and of course, for morale. Pierre measures 6 feet 1 inch and went from 170 pounds to 152. Devastating.

I'm not familiar with the 'cancer marker' concept.

Have you ever heard of a patient who had his or her tumour reduced enough to undergo Whipple procedure? 

Keep up the good work

 

Louise Couture, Victoriaville, Québec, Canada

 

Alhad123
Posts: 4
Joined: Feb 2014

The tumor marker or Chemo marker is CA-19-9 test. It measures a specific protein released by cancer cells. The normal range is 0-35. In my case it was elevated to 18000. Now with Chemo it has come down to 900. All patients with the adenocarcinoma of pancreas will not show increase in CA-19-9. I was lucky to have this protein in my blood so oncologist could monitor my cancer.

i was told that Whipple surgery was ruled out in cases where cancer had spread to liver. Then only Chemo or ablation are the options. Tumor on my liver was removed by microwave ablation. Same thing was done with my lung tumor. However these tumors have to be local and of certain size.

I don't know about the stage your husband's cancer. If it is localized to the pancreas, then Whipple surgery is possible. However according to my information, it should be done before Chemo.

i experienced an intense stomach pain during the first bouts of Folfirinox and would go to bathroom at least 30-45 times a day during first week. This is common according to my oncologist for this specific regimen. It was a night mare. My weight was reduced from 175 lbs to 132 lbs. Now I am gaining weight and gained back 150 lbs. 

I will reach one year status for my cancer in August 2014. I am hopeful. But the positive spirit and exercise are extremely important in healing. Soft massage and heating pad are great help. Since your husband is getting Folfirinox, the neuropathy of hands and feet is a common side effect. I started taking Lyrica for it. But it is better to take that capsule at night, since it causes dizziness. I was taking marinol to boast my appetite. It is legal in NJ with the Doctor's prescription. However after switching to Folfirox my appetite has improved without marinol, so I have stopped it.

BEST of LUCK to YOUR HUBAND. From my own experience, I would not wish this cancer for anyone in this world. But statistically, number of people affected by this cancer is going up every year. I don't know why. But major drug companies or Government agencies will not spend money for this cancer as only 40000-50000 people are affected every year.

SurvivorsHusband
Posts: 1
Joined: Sep 2014

Louise,

My wife was diagnosed with PC in August 2012 with an unresectable tumor and lymph node involvement. The surgeon told us it was inperable and that she had a few months at most. The oncologist said she thought there was a chance we could beat this thing. My wife went on Folfirinox and the tumor disappeared. She had the Whipple in November of that year. So yes, it is possible for the tumor to be reduced enough to go for the Whipple.

It has recurred twice since then, so the Whipple isn't the end of the road, but it has given us some more time.

Good luck and God bless.

Lecassidain's picture
Lecassidain
Posts: 1
Joined: Mar 2014

One percent a year survival rate is 100% crap. I've been repeatedly told by oncologists and other doctors not to pay any attention to statistics. I don't think this is French cynicism (I'm French and live in France). I believe ignoring cancer statistics is quite justified.

First, by definition statistics are outdated, while cancer is a domain where progress is made continuously. When statistics tell you that survival rate after 5 years for pancreatic cancer is 5%, such numbers can only refer to cases discovered 5 years ago or more. To take one example, the Folfirinox chemo that brought down your chemo marker was first described in 2010, that's 4 years ago, and in certain countries many doctors have been very reluctant to prescribe it. More on cancer statistics in the generally excellent book by Siddhartha Mukherjee, "Cancer, the Emperor of all Maladies".

Second, latest cancer research shows that each case is absolutely unique. The exact process by which a couple cells went beserk in your body 10 or 15 years ago is not exactly the same as the process by which a couple cells went beserk in my body at about the same time. You may be doing worse than the next guy, or you may be doing a lot better. For us who have pancreatic cancer, the only thing to do is for each one not to waste energy brooding on statistics, but to fight and grab as much quality life as he or she can.

I've been told I had stage 4 pancreatic cancer with cancer spread to liver, on September 30, 2012. I was 70 and otherwise in excellent health. Surgery was ruled out because of several reasons including tumor location. That was nearly 18 months ago. Furthermore, in retrospect, the disease could have been detected as early as July. If it had, I could boast having survived 20 months.

Anyhow, by Christmas 2012, Folforinox chemo had my chemo marker down in a spectacular way. Because I was extremely tired and had lost a lot of weigh (Folforinox is a most poisonous mixture) the oncologist then switched to Folfox, a less agressive chemo. By March 2012 cancer appeared to be under control, and I was back to nearly normal life (moderate wine,  moderate ski, moderate sex, moderate travelling, etc.) but by mid-summer 2013 it appeared that cancer was certainly not under control. Back to chemos. Then by late fall 2013 I had pancreatic pleural effusion, that is excess fluid that accumulates in the space that surrounds the lungs: metastatic cancer had spread from the metastatic tumors on the liver. On the eve of December 31st, 2013, I could hardly breathe. On January 1, 2014 I was rushed to hospital where doctors extracted seven liters (two gallons?) of fluid which had been squeezing my lungs. It took me 6 weeks to recover. By mid-February 2014, the problem appeared to be fixed: I had little excess fluid left, I could breathe normally, and I was again leading a nearly normal life. Not for long. The latest news is that I now have ascites (peritoneal cavity fluid) due to metastatic cancer having spread from the liver below the belt. As Folfox is now useless, the oncologist is trying Folfiri. We hope it will work. We'll see. Here is what I'm concentrating on: my wife and I have arranged a trip to Spain, to take place around Easter, with all children, their spouses, and grand-children invited. Five hotel rooms. Aim is to celebrate our 50th wedding anniversary. In reality, this will be our 48th wedding anniversary, but as we are not certain I'll be around in 2016, we decided to celebrate 2 years early. If I'm still around in 2016, we"ll celebrate again.

In conclusion, I've led a nearly normal or at least acceptable life during 14 of the 18 months since diagnostic. My short term objective is to be able to make the family trip to Spain in 4 week's time. My long term objective, stretched but not impossible according to my oncologist, is to make the real 50-year wedding anniversary, in 2 years' time. I hope you ahe just as exciting objectives.

Cheers!

Alhad123
Posts: 4
Joined: Feb 2014

I got bittersweet results from pet scan. pancreatic activity and lymph node SUV activity is low. However there is a new spot on liver and lung. Oncologist is recommending ablation therapy for liver and lung. Is it possible? What is it and are there are any side effects. Other Alternative is change chemo from folfiron to gemzar and abraxane.

 

TeresaB3346's picture
TeresaB3346
Posts: 2
Joined: Oct 2013

My Mother was diagnosed last week with Pancreatic Cancer.  We have been given no other information at this time.  She is scheduled to go back to her GP tomorrow.  I live in another state and am wondering what kind of Oncologist does she need to see?  Can someone provide me with that information? 

 

 

Oneshot
Posts: 61
Joined: Jul 2009

TheresaB 3346,

I haven't checked this board much in the last yr. So I appologize for such a late reply.  With that said I'd suggest finding both a surgeon and an oncologist that are specialized in Pancreatic Cancer.   I live in Texas and used Texas Oncology. This was due to the ER Dr. suggesting this to me the day I was diagnosed with pc.  in 2008. 

 

Will keep your family in my prayers,

Oneshot

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