JMS

Still praying you are doing well!

Hi JMS,
Thinking of you, would like to know how you are, always praying for you to have the strength to win!

Dear JMS, I have been thinking about you and praying for you. I've not seen a post from you and am concerned. I pray things are going well....my husband just had his 3rd 5FU treatment his CA 19 has gone up to 8000 It was 5800 before he started...new MRI in 3 weeks......so scared praying so hard for him....Chris

Hello JMS,
I hope that your quest for new treatment options is going well!

As I recall, you've participated in both the FOLFIRINOX and Gemcitabine and Abraxane regimens. After about 8 months of FOLFIRINOX treatments, my wife's oncologist is likely to recommend that she change to Gemzar and Abraxane treatments within the next few weeks. Understanding that everyone's different, anything that your willing to share regarding this regimen transition and related side-effects will be greatly appreciated.

In closing, a Huge Thank You for all of your contributions to the "What Next" community. Rick

Thanks for the welcome. I'm posting to your wall since I didn't know how to post a response to the question in your comment.

I'm currently on the gemzar/abraxane protocol. The combination has a been a tough regimen. My doctor says he often has to adjust the treatment schedule because it is physically taxing. But we're almost done with the treatments.

Hi JMS,

You're one of our PC Fighter Heroes. Any to share about your latest treatment strategy? Our best wishes and prayers are with you!

Hi JMS, Thank you very much for sharing your initial experience with the new clinical trial at Johns Hopkins. Please understand that I'm still on a quest for "What's next" for my life partner. Thus, I'm interested in even more details. Are you a participant in JH's Neoadjuvant Clinical Trial? If not, can you share name of the trial? Best wishes and prayers for your quests! Rick

Hello JMS, Thanks for sharing your grandchildren experience and advice. It makes sense and we greatly appreciate it. As I recall, you'll be starting a new treatment regimen. Anything to share? Rick

Thanks for your friendly email, I appreciate it. My mother is battling the Pancreatic-Monster right now and struggling a bit through the chemo. The doc and a friend both suggested medical marijuana - do you have any knowledge of the helpfulness of the products? Or best suggestions for overcoming the nausea and lack of appetite?

Hi JMS, just a note.....my husband has had 6 treatments of Gemzar and Abraxone, very mild side effects. Fuzzy headedness, slight hair loss and fatigue. In 2 months Feb-March, his tumor has been reduced by 50% and is no longer engulfing a major artery. What was inoperable may possibly be operable now. I know everyone reacts different to chemo. A friend of our told his wife couldn't tolerate chemotherapy because of something hormonal.......which may be a difference for men and women.......who knows.........I think faith is important in God and in your Doctors.........you will be in my prayers........

Hi JMS, Thanks for continuing to share the details of your experiences with FOLFIRNOX and other regimens. It's extremely helpful to those of us that are only guessing on how to prepare for what's next. We pray that your participation the clinical trial is a huge game breaker. Rick & Rita

Hello JMS, Thank you sharing your recommendation to see a dermatologist. After re-reading your suggestion for the third time in the last 2-3 weeks, it finally dawned on me that my wife has a sore on her nose that hasn't healed in a few weeks. Now, that I think about it, it looks just like the skin sores that we've all been warned to check-out. Thanks again for making a difference. I hope your latest treatment plan is going well. Rick

Have you experienced abdominal distention?

Hi JMS,

Sorry to hear that you have had to deal with additional surgeries and time in hospital. We are with Dr. Lei Zheng in a Folforinox clinical trial. The treatment was 6 months every 2 weeks and we are down to the last 2 treatments! After that we will be going into pancreatic vaccine trial. Do not know much about it just yet...there will be more small doses of chemo before the vaccine is given. We send out our thoughts and strength to you to continue your journey with more positive moments than not!

Keep us posted!

Hello JMS, Thank you. I think that your the PC's team leader in following and helping others. How are you doing?

JMS, my husband is Stage IV, mets to liver; he has never been given the option for radiation. When did you start your chemo and radiation?

JMS,

Fellow Hopkins patient..how are you doing? We are also IIB

Have you ever considered doing some thing really radical?

I met a group of people who claimed to have recovered their health with the help of Chaga mushroom. One guy testified that he had had pancreatic cancer when he began using the extract. He said his doctors simply declared his recovery spontaneous remission. In truth, I believed his story. I keep Chaga mushroom in the house and use it sometimes, as a tea or an extract. I couldn't get involved with the group because they were into multi level marketing which I don't very much like but I do like (and believe) in the mushroom.

It grows in the North country on dying birch trees. It is said to be off the charts in ORAC rating.

http://www.eartherbs.com/index.php?page=83

http://altmedicine.about.com/od/herbsupplementguide/a/chaga.htm

Memorial Sloan Kettering has a list of botanicals. Chaga is one of them. Because it is not patentable, there are few studies on it despite it being effective, if you read the following "mechanics in action" you will see it inhibits cancer growth.

http://www.mskcc.org/cancer-care/herb/chaga-mushroom

There are no adverse reactions from Chaga. No one knows how it might act if taken with pharmaceutical medicines.

I'm so sad for you to need to make such choices. I hope your holidays are filled with loving family and friends.

Any experience with cyst in eye from pancreatic cancer

Hi Zoe. Thanks for the information. My husband has so many other problems like diabetes, Parkinsons and neuropathy. WAs your xeloda covered under insurance? My pharmacy tried to put the xeloda under his prescription coverage and of course it did not cover. The cost is $2200.00 for 56 pils. Someone said that medicare part B is where it should be billed. My concern is that medicare will only approve so much and i will have to pay the balance.

Thank you so much. The doctors office is working on this right now. I really appreciate your kind offer. I will let you know. It is so hard to stay strong but I know we have to. Keep in touch

Thanks...I'll let you know how my flu shot goes in the next week or so...I'm so happy about this !
I have chickened out and walked out of CVS more than once.

hello Jms,
We have had gemzar and then folfox a brief experience with a parp inhibitor trial
Now told there is only ironitican left and will not be very effective/needless to say I am very down.Itt is my husband who is stage 4,Can not do abraxane because of the neuropathy from the folfox, Thanks for any info Country

Hello JMS,
Did you start the clinical trial? Hope the Holiday was spent with good friends and family!
Country

Thank you very much for sharing your experience with FOLFIRINOX. My wife just completed her 3rd treatment and has been tolerating the initial side effects really well. That said, it's extremely helpful to hear about the long-term effects that you're enduring along with the new strategies you're undertaking. While we're currently committed to the FOLFIRINOX regimen, I've read about new initiatives at The Ohio State University (http://cancer.osu.edu/mediaroom/releases/Pages/Ohio-State-University-To-Lead-New-Pancreatic-Cancer-Trial.aspx) and University of Minnesota's futuristic "Project Stealth" (http://projectstealth.org/). Best wishes in your quest to improve your quality of life and share your journey with others. Thanks again, I'll definitely study the information that you've already shared to prepare for future discussions and decision making. Rick

Hello JMS,

First of all Merry Christmas
Thanks for the input, Will you be able to participate in a cinical trial. Did they test your tumor for specific expressions. I think you are at johns H/ We thought about there but instead go to tgen at Arizona .Hoping now the surgery is over you can
find a trial, Hope you are feeling well enough to enjoy your Holidays.
Deb S/Country

Dear JMS, Thank you for your answer. Best wishes for the future.
Marty

Thanks JMS! My husband has prostate cancer( being put to sleep with hormone drugs and he now gets the fun experience of hot flashes!)-they found kidney and ureter (removed right) after his whipple in Feb. He did 30 days of radiation and zoledo and now has 4 infusion treatments left. He is the eternal opptimist and that has been really great. Did you have any interaction with elevated c19-9 during treatment? We are waiting for information from Doc about that now-been over a week. I hope you are feeling well

I do hope your procedure the week of 4/8 went well, doing great with recovery, and you are able to enjoy all the goof stuff again!

Thank you for your response . I didn't know how to post the questions you asked me. I'm having surgery May 8 . I have a tumor on the head of my pancreas. He plans on going in liproscopic to look around if he doesn't see any other cancer he will go ahead and cut me open and try to remove tumor only, if that isn't able he will do whipple.
I have a lot of back pain,and burning under my ribs. I'm ready to get this behind me. I'm just a little scared.