1

(25 replies, posted in General Discussion)

Lisa,
I suffer the same hives.  I have since I was diagnosed with cancer. 

At first it was the excessive billirueben, in my bloodstream.   After the whipple, they would come on at such random times, that I too was ask if I changed laundry detergent, shampoo, ect ect.

We are now five years later, almost. 

I do know that I can not eat anything with red flavoring or coloring. 

Also, I stopped taking all my meds, then added them back in one at a time. 
It was none of those. 

Anyways, after five years, I have diagnosed myself.  Bread and butter. 

I don't know yet if I have developed a wheat allergy, ceilic, or gluton, or even just the yeast in the bread.  I just know that I stopped eating bread, and the hives are gone.

The reason I don't think its a wheat allergy, I can eat waffles, pizza crust, pie crust, and no breakout.    Not to mention,  both my Grandparents were wheat farmers and I have been around it my entire life. 

I have my next Dr. apt the first part of next week and will see what he suggests in the form of testing.

I hope this gives you hope and an idea or two on how to figure out what is causing yours.  I wish you the best.

2

(0 replies, posted in Websites)

http://www.ebay.com/sch/bakerlady31/m.h … amp;_rdc=1



I think she has less than 20 left.

Thanks Ladies.

But we need statistical analysis.  Collection, examination, summarization, manipulation and interpretation of quantitative data provide underling causes, patterns, trends, etc.

Marions, don't take this the wrong way, but, this sounds like some government run mumbo jumbo.  It would be simple enough to poll the members here with such choices as:

did you  or you loved one, have chemo following surgery....Yes, or NO
Date of Surgery,
Date of Death, or
Length of Survival thus far.

Maybe I am too simple minded....

Looking at this data, seems like its saying without surgery , average survival was only 5 months.  With chemo and radiation.

With surgery, then following with chemo and radiation, lengthens survival to 18 months. 

I have issues identifying with this study. Having no chemo nor radiation, I am now about to hit the 3 year mark. I would have loved for them to add to this study , those who did not take the chemo nor radiation. 

It really does seem that we are a rare breed.  Perhaps it is the area where I live, rural, where not one Dr. felt it was a real need, was only told there was no evidence that it would prevent the recurrance.

If one reads these forums enough, you would perhaps notice that most who do the chemo, after the surgery, are the very ones with the highest reccurance.  I just do not know what to think .

5

(3 replies, posted in General Discussion)

That rash is horrible, and it is from the elevated liver enzymes in his blood. I had this in the groin area, on the palms of my hands and my feet. Nothing relieved it, but, talking benedryl can help, along with Sarna , lotion.

This , along with yellowing eyes, it what took me to my first Dr and my dignosis.

If he is hospitalized, they do have a powder that is mixed with juice or liquid, that can help.

I got the final notice on this claim from BCBS of Ok. The denial stands. They included a whole list of cancers that the pet scan is considered appropriate for, however, this cancer is NOT included.

7

(134 replies, posted in General Discussion)

I am so sorry to read this. She fought the battle like no other and from her posts here, she never gave up and never let anyone tell her the battle was over. Very sad, but know her pain is gone now.

8

(4 replies, posted in Thought for the Day)

Today was the first time I ever heard this Diamond Rio Song on the radio and I immediately thought of you and Teddy, and his service today. Wanted to let you know that I am thinking good thoughts for you as you so bravely go though the day.

Last night I had a crazy dream
A wish was granted just for me
It could be for anything
I didn't ask for money
Or a mansion in Malibu
I simply wished, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

First thing I'd do, is pray for time to crawl
Then I'd unplug the telephone
And keep the TV off
I'd hold you every second
Say a million I love you's
That's what I'd do, with one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

Leave me wishing still, for one more day
Leave me wishing still, for one more day

9

(54 replies, posted in In Remembrance)

I am so sad that your soulmate is gone but yet, happy that his painful journey on this earth is over. God called him home knowing your a strong woman who wished the best for her man! 

Huge hugs to you Lainy!

Lisa, somewhere here I posted about my frustration regarding this very topic. It was a year or so ago. Whenever the telemarketers call my home wanting me to donate, I simply state that my belief is there are many other cancers out there that do not get the funding they need.

Isisman,

I probably owe you an apology. After watching my relatives fight the good fight until they took their last breath, there was never talk of giving up by the patient and dang sure none of that from the caretakers. 

My whipple surgery was on Sept 20. 08. Just passed my two year anniversary with NO sign of recurrance, and I DID NOT, undergo any Chemo nor Radiation. Something you are constantly telling people must be done. Why?

My pain after surgery lasted at most six month, but, was off pain pills at about three months.  I still have some pain and uncomfort, but, this is more from my new digestive system, and is not related to cancer, and is more along the lines of an upset stomach type of pain, picture a little child saying my tummy hurts.

I certainly hope that the Dr's can figure out why your husband is hurting so much despite having a nerve block and internal and external morphine pumps. Perhaps, its just in his head, as there is no way he is feeling anything at this point? Do you have a trusted minister or counselor that you could approach?

lsisman wrote:

No his esophogus issues was never an issue. They "found" it and treated it but he never knew he had it nor experienced any "better feeling" after it was treated.   Also, we like our doctors and treatment facilities, there is nothing wrong with throwing in the towel as sometimes prolonging survival when the end comes anyway, is grueling!   We have no interest to get another opinion and find it crazy in seeing what people go through just to add one more year. My husband is in really bad shape and it would be a miracle to get him to survive this.  There is more comfort in not driving yourslef crazy with more appointments and he does not want to travel.  Besides all his labs show normal results and more than one opinion confirmed this, only cancer in tiny infected nodes shows on the scan. I think i was just venting, but I realize now that as soon a you vent, everyone wants to offer  you advice and in most cases it is always "you should get another opinion".  I'm tired of all of this, I'm sick of it actually, I dont' want to add appointments and mailings and all new conversations to my already hectic days and weeks. Yes I sound stubborn and selfish but I have no quality of life now either and I don't like seeing him suffer. I know this is not the opinion of everyone else on this website, but I say things as I feel them and I don't sugar coat anything. My husband respects that part of me and he is the same way...guess he taught me well.   Anyway, thanks for your interest, but we are fine. I think I need to stay off this site. It makes me very defensive, sorry.

Ya know, I have tried to follow whats going on with your husband and perhaps, like others here, it just does not make sense. A morphine pump, spinal block , nothing is helping with his pain, but, yet his bloodtests are all normal.  Yet, you posts indicate you wish he would just go ahead and die so you can go on with your life. This is what I read from your posts.

Most who post here are looking for support from one another. Common symptoms, prognosis, treatments, draw them together, to form a bond. I think it probably is best if you move along, as there aren't anyone here for you to share you wish of death, for you husband, especially when, there is no diagnosis yet, of what his illness is. 

Sorry to be so blunt. Perhaps it was the recent death of yet a third member of my family, Lung Cancer, who fought for two years, was never in any pain and was having an enjoyable day at the casino with his family the day before he passed on Sept 18th. 

I read similar stories on this forum all the time, and do not recall a single member here posting anything close to what your saying is happening with your husband.  Perhaps I too am just venting. Perhaps you just rub me the wrong way because there are members on this very forum who are fighting the good fight and have fought this fight for many years and here you are, wishing death would come to someone you supposedly love?

If I had a terminal prognosis, your posts, would make me question my family as to how they really feel about my fighting this battle. Perhaps your husband would be better served if you were to place him in a care facility, or a truly loved member of his family, and then you get get back to what you call your life.  Just WOW.  No sugar coating here either!

13

(14 replies, posted in General Discussion)

Ok, glad to hear he is already on the enzymes. Can you give us an idea of what he is trying to eat? I know for at least six months after my surgery, any thing made with hambuger was out of the question. Eventually, we could buy a 97% /3%, very lean, mix. Ensure was a big help, given to me by the case by the American Cancer Society. My confort food during this time was cottage cheese of all things. Oh, and popcycles. Its been almost two years since my whipple and I still can not eat much fatty foods at all. Chocolate of any kind, makes me pay, no potato chips of any kind, ice cream, or even frozen yougurt, gasses me up to where I am so miserable, I can not stand myself. Cheese does the same at times.

Oatmeal and toast is my normal breakfast. Maybe a turkey sandwich or a salad for lunch. Porkchops or steak,  or fish,or  chicken with baked potato and vegetable is normally dinner. 

I lost 70 lbs. post whipple and have now managed to gain back only about ten.

14

(14 replies, posted in General Discussion)

Get a script for some enzymes. I lost weight until at six months after my whipple, my surgeon gave me those. Helps with absorbing the nutrients from his food.

Praying and watching for updates.

After turning this over to our state insurance comm. the only thing I have heard is that they changed the status from denied, to pending. They are telling them that it was a mistake to send out the letters, although there were many of them, saying denied. They are now pending, waiting on medical records. I am sure this is a delay tactic, when appeals run out, they will again be denied.

However, my decision to have them at OU medical Center in OKC, has worked out in my favor as they are a preferred provider and due to the contract between them, bcbs and OU med center, the Med center has to accept what BCBS sends. If they send nothing, they can not then, sue me for the unpaid portion.  This is per a rep from BCBS.

To be continued, I am sure.

My sister does hospice care up around the Denver area. She tells me that to qualify, so to say, its a diagnosis of 6 months or less left, also, the company she works for, not sure if this is nationwide, the paitent is no longer seeking to have life saving surgery. Pallative chemo is allowed if it is helping to relieve some symptoms.

Hope this gives you a little bit more info.

((((Rick))))

Updating with what little info I have.
I have yet to hear from insurance commissioner, however, I did get a letter from BCBS stating they were reopening the claim! Thats all I got for now!

Lainy wrote:

Jill...I cannot resist this...but instead of a PPO should it not be POOP!~

HA HA HA! Lainy, I happen to agree with your assessment!

Still have not heard a single word, via email nor phone call from this PAF.

Thanks to all that have responded here. I am getting all the paperwork together right now to send into the state insurance commission.

Oh, and someone ask if my plan was hmo or ppo, it is a ppo.

Thanks Lainy and Marion.

Here is the thing. This time last year, same thing. I wish to get this resolved for all of us in Oklhoma. I have found where other state insurance commissioners, have taken them to court and ruled that the PET scan is not experimental. Our commissioner has sent me a form to fill out and send in and believe me, I am printing out the other states findings to send along with.  We, paitents and familiy members , should not have to fight this every single time it comes up. GRRRRRRRR

Marion, they do pay for the ct, partially. These bills are for what the insurance will not pay and our local hospital does not have an agreement with BCBS, so whatever they don't pay, becomes my responsibility.  I also got notice of non payment of PET, today, at another hospital where they do have the agreement, however, since they deemed it, experimental, the statement says I have to pay these charges, looks like about six thousand dollars.

Both the oncologist and my surgeon, did request the pet scans. Says it is the best tool they have to detect cancer.....

I am looking for anyone who has BCBS. Need to know if they have ever paid for one of your PET scans.

We have just had a claim denied saying this is experimental or investigational.

Thanks. I am just so upset right now with all the medical bills and this for a person who had paid health insurance premiums for over 25 years. I can not imagine what those with no insurance are going through. 

Maybe I just need to get divorced and go on Medicaid.


Jeez..........

Thanks for posting the link. I just requested help with medical bills. My Insurance , BCBS, of Oklahoma, just again denied paying for PET scan. Says this is a expiramental or investigational precedure. I had the hospital call me again last night, wanting payment, but, you see, this hospital, everytime you walk in the door, opens a new account. I have at this time 5 different accounts, so even though we are making paments, on the oldest account, they sent the others to collection. I am just getting overwhelmed with all the bills and have at this time, stopped going for my checkups, thus, even though it would be time for another ct scan or pet scan, I just can not handle getting one more medical bill.   I certainly look forward to hearing from your organization, and will report back here if they are of any help ! Just sign me extremely frustrated at this point!!

Praying for both of you! Hoping for good news.