support for pancreac cancer

[dobronte]

My wife just went through pancreatic cancer surgery at the Mayo Clinic in Rochester and they weren't able to get the tumor out as it was to big it must be shrunk before they can operate will be coming back to TV for the chemo and radiation is there anybody with the similar situation
Dave

[benj]

Dave

wishing you two the best luck in your battle. I offer my prayers. Benj

[Boomer]

Dave,

I am composing something in Word right now. It is a little long. It is information that may help your wife as she goes through radiation. I know about this disease. I accompanied someone very close to me to appointments for quite a long time.

I never compose in Word when I write here, but I am doing that for this one. So I hope I can get it here soon.

You and your wife are in my thoughts and prayers.

Boomer

[graciegirl]

I am thinking of you both and sending love and prayers.

[Peachie]

Dave, are you able to get a referral or recommendation from the Mayo Clinic in Rochester, MN where your wife has received treatment to this point? Quite often these medical facilities are excellent in directing people to continuing treatment. I do know there is a Mayo Clinic in Jacksonville, FL but there must be a closer facility from which to receive treatment. Good luck and I hope you are able to locate a center with the level of treatment that satisfies your wife's medical requirements.

[Boomer]

My wife just went through pancreatic cancer surgery at the Mayo Clinic in Rochester and they weren't able to get the tumor out as it was to big it must be shrunk before they can operate will be coming back to TV for the chemo and radiation is there anybody with the similar situation
Dave


Hi Dave,

I had never intended to write about this on TOTV. But there was never a reason before.

My computer is in my kitchen. I just walked in here and put on a pot of sweet potatoes and thought I had better hang out close by so they do not boil over. And, of course, I looked in at TOTV and here I found your question.

I am not in TV. I am in Ohio. I do not know about support groups there. But I know a little something about pancreatic cancer. And I want to pass some information along to you on the chance that it may help as your wife goes through radiation. You may already know this because you have been with Mayo, and they know their stuff, so you may already be aware of what to expect. But I will put it out here anyway, on the chance that you do not know, and that it could help your wife or somebody else. And besides, the person I am talking about would want me to share this, in case it could help.

First of all, I know that you are talking about the Whipple and what needs to happen before she can undergo that surgery. The person that I am talking about who had this diagnosis was not a candidate for the Whipple because of other health issues. Had the other issues not been there, he would have been a good Whipple candidate.

And please let me say right here, before I start into the info, that at the end, the cause was not the cancer.

In this case, the treatment was radiation and chemo. For 3 years I went along to doctor and treatment appointments. The radiation was first. I am trying to remember the number of treatments. I think it may have been 25, done close together. Accompanied by a pill form of chemo. The radiation hit the tumor right in the middle, and I remember the doctor saying, "Necrotic tissue right in the middle." And I remember explaining to my family member that those were good words.

But here's the part that I want to share because I had to wrestle the oncologist a little bit over it. (I can do that. Does not bother me one bit to wrestle an onc.)

My dear close relative started dropping a significant amount of weight after the radiation treatments. Not to be indelicate here, but we are talking about the facts. Food was going straight through the system.

At that point, the radiation treatments had ended and the appointments were with the regular oncologist, fairly frequent appointments. And at each appointment we would say, "The weight loss is awful. The symptoms are awful. What can be done?"

And the oncologist would say, "Lomotil, Imodium.�

Pancreatic cancer was the big elephant in the room. Only instead of being a big elephant that everybody pretends not to see, it was the big elephant that was the ONLY thing that could be seen. And that was all the oncologist himself could see. It was being assumed that the fast weight loss was from the cancer itself. And that all that could be done was to try to manage symptoms.

But that was not what was going on.

So every appointment we would ask the same question. And every appointment the onc would say the same thing. It was like we were reading from a script or something.

But one day, the oncologist said, �Well, there are these enzymes.�

And I said, �What enzymes?�

And the onc said, �Oh it�s a prescription and they do not always work.�

And I said, �Can he have them?�

And the onc said, �They do not always work.�

And I said, �This is cancer we are talking about here. CAN HE TRY THESE THINGS?�

And the onc turned on his heel and left the room. (pushy woman that I am.)

And then the onc came back. And the onc handed us the prescription.

And things changed immediately. Nutrients from food did not go straight through. Weight returned. Quality of life was greatly, greatly improved.

One of the jobs of the pancreas is to produce enzymes that metabolize fat. When the pancreas was hit by the radiation treatments, the treatments hit the tumor but also compromised the pancreas� ability to do one of its jobs.

The pill is called �Creon� and it is by prescription only. It is also given to cystic fibrosis patients.

Why were these things not offered in the beginning? All those weeks of weight loss and misery. Sure, the enzymes do not always work. But this time they did. Not a cure. But life sure got better and stayed that way for a very long time. It was so simple. But the oncologist could only see the cancer itself as the cause of that weight loss.

Something else that I learned that makes this even so much more clear is what I read about that OTC diet pill called �Alli.� I know someone who tried it. It sent the food straight through. Fat does not stick around. Well, guess how it does that. It blocks the pancreatic enzymes that help to keep some fat for the body to use. Interesting, huh?. Why wasn�t that onc�s first, or at least second, thought to at least try �Creon� or something like it to see if the weight would come back? That weight that had been lost, not due to the cancer itself, but due to the radiation treatments. The treatments that hit the tumor as they needed to do. But took out enzyme producing ability that could easily be replaced by just swallowing a pill with meals. Why wasn't "Creon" tried immediately. Tried.

Maybe Mayo told you this. But just in case, and if you see that rapid weight loss with radiation, please keep this in mind. When things are so hard, you sometimes find that you often end up as an advocate for the one you love. It should not be that way. But sometimes, not always, it is.

So there it is. My closeup experience with seeing pancreatic cancer treatment. I have told this story a few times. But never here. There was never a reason before.

I am thinking of your wife and you. And I pray that everything goes right and that she is soon on her way to the surgery that can help her.

Take care.

Boomer

(And I forgot to say here that I have no medical background. This is just information gained from experience. I always put my little disclaimer on here when I write about anything medical which is not too often. Just when I think it might help somebody maybe.)

[tkret]

Boomer,

Great post; very interesting, a lot of food for thought. Thank you!

dobronte ,,, rooting for you and your bride with prayers for answers and support. really feel for you both.

[Boomer]

Boomer,

Great post; very interesting, a lot of food for thought. Thank you!



tkret,

As I looked back at what I just wrote, I think I see the steam is still coming out of my ears because that oncologist did not try these things right away because "they do not always work." And, of course, it is not a cure. It sure did improve things though. It's a prescription for enzymes for goodness sakes, not some experimental drug. We asked the same question week after week. I did not realize that I was still so mad. It happened a while ago.

And I did not tell in that post what I did after that.

What I did after that was that I told that oncologist almost every time I saw him what a great idea he had to give that prescription for Creon. I wanted him to try that stuff right away next time someone showed that rapid weight loss after radiation to the pancreas. This case was one where that try was sure worth it. And you know what. His own stats were improved by trying something so simple, even if it did not always work. I just wanted to keep it on his mind. So I told him what a great idea it was. Every single time I saw him. I do not think he ever tired of hearing it.

And Dave, I really think Mayo will be much better. But I wanted you to have this information, just in case it might help.

Boomer

[tkret]

Boomer for Surgeon General of the U.S. :#1: I very much admire your style.

[Blondie]

Dave,

I don't know much about pancreatic cancer; however, in addition to the wonderful insight Boomer has given you, TV and TOTV can offer the most positive support by way of friends, thoughts and prayers that would be difficult to duplicate.

You and your wife are in my thoughts and prayers, Dave.

md blondie

[KathieI]

Dave, this is a perfect time to post on "Helping Hands" thread. We are here for you and your wife. I know you will probably need some support in the coming months, of things that you would like to do but can't. We have all posted under this thread, the kinds of things we can help you with. Please take us up on it. TOTV forum peeps are really reliable and good friends in a time of need.

You can post or PM any of us as to what help you need, and we will be there for you two guys....

God be with you both, and we're praying for ya.... Kath

[tkret]

Dave, this is a perfect time to post on "Helping Hands" thread. We are here for you and your wife. I know you will probably need some support in the coming months, of things that you would like to do but can't. We have all posted under this thread, the kinds of things we can help you with. Please take us up on it. TOTV forum peeps are really reliable and good friends in a time of need.

You can post or PM any of us as to what help you need, and we will be there for you two guys....

God be with you both, and we're praying for ya.... Kath


Beautifully stated Kath.

DAVE, what a community! They are there for you if needed.

[dobronte]

Thanks everyone for your kind words and inspiration during this time of need and hopeless feeling I GET and I'm sure Shirley feels the same way we will be in R OCHESTER for about a week and she wants to be in TV for her Chemo and radiation We do have a carringbridge site telling her day to day progress its Shirleybronte

Thanks again everyone

[KathieI]

Hi dobronte, Are you and Shirley in TV yet? Its been a little over a week and you stated that you would be returning around this time.

Please let us know if you need ANY help whatsoever. As I previously stated, you can PM us, especially me, and let me know what assistance either of you might be needing.

I'm praying for you guys. KathieI

[parksummit]

Dave--My thoughts and prayers are with you and your wife. Feel blessed that her condition is operable--the Whipple method that was mentioned in an earlier post can be very effective.
My wife was also diagnosed with Pancreatic Cancer in February 2005; hers was inoperable. We were fortunate enough that with the help of a fantastic oncologist and prayers and support from a great network of friends and family to prolong her stay on this earth for 18 months. We went through all of the treatments, the radiation and the chemo and dedicated all of our time and efforts to making the most of the time left together. We shared our 31st wedding anniversary in the hospital with a renewal of our vows with friends, family and our Pastor in the room.
It has been two years (August 12) since she passed with all 3 of our children and other family members present. It was peaceful and she was ready. Her passing has left a tremendous hole in all of our hearts but we take pleasure in knowing that we did everything that we possibly could to ease the suffering and pain as she put up such a strong fight. I will spare you the details.
I guess the reason that I am posting this is to try to help you and your wife to retain a positive attitude and be so glad that the Whipple method is available. We became very active locally with cancer support groups and I personally know of three (out of three) that went through the Whipple treatment and are now CANCER FREE!!!!! My prayers are with you and please feel free to send a private message if you would like to talk.....

[dobronte]

Its been a while since I've posted as we have been very busy with all her procedures. The Mayo Clinic was not able to perform the whipple procedure as the tumor was to close to some blood vessels. So we came back to Fl. Shirley is doing the chemo here in the villages with a Dr. Tumala at southern trace and is getting it in the form of a 24 7 pump that she carries around. The radiation is everyday at the cancer center here in the villages with Dr. Flink who seems very smart and is very good.The problem is she is losing so much weight and that is a concern at the time Thanks for your concern Dave

[nONIE]

Dave,

We will continue to keep your wife in our thoughts and prayers.
Gods strength to you both.

[Boomer]

Hi Dave,

You and your wife are in my thoughts and prayers. The weight loss you mention -- is there a chance that it could be due to the radiation effect on the enzyme producing capability of the pancreas?

When I first saw this thread, I wrote here about the experience my family member had with weight loss that was caused by the treatments rather than by the cancer itself. Enzymes given by prescription, though not a cure, helped so much to return quality of life. This does not work for everyone. But in the case I was close to, nutrients were not being absorbed from food and weight loss was rapid.

Please do not feel that you must answer my question about this. I just wanted to post here again to let you know that I care very much about what you and yours are going through. I understand. And, just in case, you had not remembered about my old post that is here in the thread, I wanted to remind you, on the outside chance, your wife could be given back some quality of life, as was my dad.

These enzymes are not a health food store item. These are a prescription medicine. My earlier post here from September explains it all. Your dear wife's situation may not be the same as my dad's was, but I did not want to not mention it again -- just in case. It's on the first page of this thread, a little after midnight, on September 11.

Boomer