TomLand

My heart goes out to you. You, without a doubt, have to be the bravest person ever, or the stubbornest! Maybe some of your Kentucky orneriness coming out. I would advise anyone who ever thinks about giving up to read your story. By sharing your experiences, you have helped Pete and me feel more positive, even when there seems to be nothing to be positive about.

Thank you for being you , and God Bless you!

Linda

Thanks for the reply. I'm sure he will come around and realize how helpful you have been, by your own choice.

I've been gone from Sloans Valley pretty much since graduating from Burnside High School (yep, there used to be a HS there) in 1968.

Here is an idea that may help move your sweetie into acceptance and out of the dark hole of "Why did this happen to me?". The link is to my site on Caring Bridge, you can check it out then go from there to the main page to set up a site. Donations are not required and the site is free. I have found keeping the journal soothing for myself. Somehow putting things in print makes them more real and acceptable.

http://www.caringbridge.org/visit/tomland1

Hope it proves helpful.

As you will see, I was not eligible for surgery because it had already spread to the liver. I had 2 tumors on the pancreas and 7 on the liver. Having had surgery his recovery is pretty rough as I understand it, biut it gives him a chance to be a long term survivor. In my case a two year survival is rare and 5 year almost unheard of. Remind him how fortunate he is.

Good luck on the scans. I get the results of my six month scans in the morning - can't wait. I'm always nervous but so far my results have been very good.

Just thought I would check how your 6 month scans, went-- hope everything turned out well.

My cantakerous boyfriend is now feeling like a lucky guy afterall. I shared your story with him, as well as a few more on this site- now he is getting some idea of how much worse his situation could be, and it has actually helped him. I think some of the intitial shock is wearing off and things are becoming clearer to him now. He is not such a bear with me anymore either. Thanks a million!!! It is amazing how much help a few words can be.

We will be starting chemo/radiation this next Monday. We are going to use Xeloda orally while doing radiotherapy. With any luck there won't be too many horrible side effects.

Thanks for all your help!

Hugs and prayers sent your way!
Linda

Thank you, Tom. I also had Gemzar infusions. Didn't shrink the tumor but stabilized it. Hasn't spread to other organs or lymph nodes. Did you say you had surgery?

Tom,

I'm sorry to hear about your pain. My mother has stage III pancreatic cancer and she had considerable pain for quite some time. I don't know if this will help you, but my mom got two shots for the pain. From my understanding, they literally stuck some kind of tube down her throat and into and through her stomach and then injected something into her. I'm not sure whether it was the tumor or the nerve, however. On her first attempt, the shot did not work very well, but it did on the second. She has no pain associated with the tumor any more. Hope this helps and I wish you all the best.

If you would like more info, please ask me and I will ask her exactly what type of shot she got.

Thanks - that is something I have not heard of before, nor did I see it in my research. Would be glad to know more about it.

Tom,

I spoke with my mom today and she said it was an endoscopic ultrasound guided celiac plexus neurolysis. I hope I have that name correct. She had it at the University of Washington Medical Center in Seattle and it has really been helpful for her. Her pain dissipated slowly, but within one month or so from her first shot, it was pretty much all gone. Hope this helps and if you have any other questions please ask me. I could probably get you the doctor's name, as well, if you like. I wish you the best Tom.

The system will not save so am pasting here.

Following the positive evaluation of the second Gemzar chemo series the decision was made to continue with a third series which started Valentines Day - hope it is sweet to me :)

Hi TomLand,

Just this. What was the problem? I'd like to get it fixed so it doesn't happen to you again. You can either respond here or email to contactus @ whatnext (dot) com

Thanks,
Dave

System will not let me save so am pasting here so I don't lose the thought :)

CT and PET scans at the end of the second series of 6 Gemzar treatments indicate no new tumors, all tumors on pancreas and liver are shrinking and are metabolizing at background tissue levels.

After two series (13 treatments) of Gemzar it continues to work much better than expected with no sign of losing effectiveness. All cause for celebration!

The system will not let me save so am posting here until it will.

As a type II diabetic for some 15 years I can say I never experienced neuropathy. If my blood sugar went low I would get a little tingling in my fingers first, kind of a warning of bad things to come. Never any other problems and never in my feet. After a few weeks of starting the Gemzar chemo treatments I started to notice problems in my toes. At first I did not know what it was. As treatments progressed so did the neuropathy and soon there was no doubt what was going on. My feet became entirely involved and it started in my fingers. It got to the point walking was painful. My oncologist wants to blame it on the diabetes however there is no doubt in my mind it is a direct byproduct of the chemotherapy. The first treatment was Amitriptiline (Sp) which provided a good night's sleep and some lessening of the neuropathy but the improvement would end around mid-day. I have recently switched to Lyrica with better results. It does not have the increase in drowsiness effect but has improved and longer lasting reduction in the neuropathy.

Non-related to the neuropathy but also a quality of life impacting development has been swelling (edema) primarily in my feet and legs. It became quite severs pretty quickly and at its' peak severely impacted my ability to walk. A combination of a Furosemide (a water pill), elevating my feet at night and good quality support stockings have greatly reduced the swelling.

I think as long as the Gemzar chemotherapy continues these side effects will continue to be a part of my life. I will continue to work with my Docs (the Oncologist likes to refer 'side-effects' to my primary care physician) to improve treatment results. The Oncologist says such symptoms occur in only about 3% of patients on Gemzar - guess I am one of those lucky 3%.

Hi Tom,

Glad to hear the good news. I too, am on Gemzar and find it helping me. Thanks for the update.

Lizzy

Hi Tom,

Thanks for your post. It looks like you have had surgery. Did you have the Whipple? I am not a candidate for surgery since it has spread to 5 places. I feel well daily with the help of pain medications. My husband and I juice every evening and feel so much healthier having all those nutrients at one time. I did lose my hair a few days ago and I am dealing with getting used to it. Men don't have to worry about that. lol

Thanks again for writing. Let's stay in touch.

Lizzy

Lizzy - Mine had spread before diagnosis, 7 tumors on the liver in addition to the 2 on the pancreas. So I was not a candidate for the Whipple surgery or any other. I am on Gemzar, 7 on, one off due to being in a study. I have #3 in series 2 Tuesday morning. The first series worked well, especially on the liver tumors. Chemo has not cost me what hair I started with.

I am not a juicer but had a call from my sister-in-law last evening regarding someone she heard about in church that credited juicing asparagus with curing their cancer. Don't know what kind of cancer or any details.

So far it seems the one thing I/we (those with pancreatic cancer) have to do most is 'get used to' the constant changes. I don't know about you but it seems to me there is a new challenge after every weekly chemo session. My current, as of the last couple of days, is swelling in feet & legs. Oh well, this too shall pass (the sooner the better).