Topic: How Do You Know If Your In The End Stage?

Nancy had her Pet/CT Scan last Tuesday 6-6-10 to see how she was reacting to the Chemo (Gemsar/Oloxitan). We had an apointment with Dr. McClay her Oncologist on Thursday 6-8 to discuss the results, however when she went to Dr. McClay's office on Wednesday 6-7 to recieve her next round of Chemo she was told that the results of the Pet/CT Scan showed the tumor in her bile duct had extended into the stomach lining and the tumors in her lungs had increased in size from 2.8 cm to 3.5 cm. Her Chemo was canceled and Dr. McClay wants to try Avastin next. He has to get approval from Cigna first.  I don't know if Nancy can handle another round of Chemo. Since this started in April, Nancy has virtually no appetite and struggles keep hydrated. If she does eat or drink it usually comes back up. We take her to her Oncologist's office to get rehydrated 2 to 3 times per week. I thought it was due to the Chemo, however she hasn't had Chemo for two and half weeks and she still doesn't get out of bed, eat or hardly drink. Is Nancy at the end stage of this disease? I know she can not continue to not eat and survive. I have read a few books that say you should not force patients to eat or drink at the end stage as it results in prolonged suffering.

Steve & Nancy St.Germain
(49)        (49)

Re: How Do You Know If Your In The End Stage?

Steve.... I remember you speaking with Dr. Lenz and he was willing to address only the questions coming from Nancy. It appears that Nancy needs hydration because, as you have mentioned, food or liquid by mouth will cause her to vomit. Is  possible for you to speak with Dr. McClay?  I believe that you need some clarification regarding Nancy's condition.  That is of course only, if Nancy has given permission to Dr. McClay to discuss her disease with you.  I do not think that you should withhold any food from Nancy.  That is a decision only she can make.  Please, let me know what Dr. McClay has shared with you.
I am thinking of you and am sending all my best wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How Do You Know If Your In The End Stage?

Marion,
We have been taking Nancy to get rehydrated 2 to 3 times per week at Dr. McClay's office. We have an advanced directive (Five Wishes) so I can talk to Dr. McClay. I did contact him and he is prescribing Marinol to see if that will work. Nancy has numerous anti nausea medications but they don't work. When I asked if Nancy was at the end stage of this disease, Dr. McClay  said that if this next round of Chemo is not successfull, it may be time to stop. I don't know how long a person can go without eating. Nancy can only sit up for a short time and needs a wheel chair if she has to walk more than 100 feet. She sleeps most of the time. We have never or will ever withhold food or liquids from Nancy. But from what I have read, when the patient gets close to the end, they do not want food or water as their bodies shut down and most families have a difficult time with this. I guess I'm just trying to figure out what stage Nancy's in. What the doctors won't tell you, the members of this site help fill in some the blanks.
Regarding Dr. Lenz, he refered us to Dr. Genyk at USC for surgery. Both Dr. Lenz and Dr. Genyk are not convinced that the tumors in Nancy's lungs are malignant. They said that metastasis to the lungs is unusual for CC. Dr. Genyk said he needs more CT Scans to make a determination if it resectable but cautioned us that even if there was no metastasis to the lungs, it would be a very difficult surgery.

Steve & Nancy
(49)       (49)

Re: How Do You Know If Your In The End Stage?

Steve....Thanks for clarifying.  I would not be concerned about offering food or liquids to Nancy at this time. Unfortunately, the vomiting can be difficult to control.  I found suppositories to be quite helpful.  You might want to give it a try.  I figured anything bypassing the biliary system by entering through the blood stream might be of great use. But of course there are no guarantees. 
You will have a clearer picture after completion of the next therapy session as to how Nancy is responding to the current treatment. The extreme weakness you are describing is not so unusual.  We have seen, on this board, plenty of times for a person to bounce back steadily after treatment have been halted.  I am wishing the same for Nancy.
Several of our members have been diagnosed with lung metastases.  In fact, you may read up on previous postings by entering "lungs" or, "lung metastases" into the google search function, top right hand side of page. Also, Lisa had posted on it today as has Linda. 
Hang in there.  Others have described this disease as a roller coaster ride and I happen to agree with that statement.
I am hoping for other members to also come forward and share their knowledge with you.
Many warm wishes are coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How Do You Know If Your In The End Stage?

Steve,

I am sorry to hear that Nancy is having such a tough time right now. My dad suffered a lot with nausea and also spent an awful lot of time in his bed. Like Nancy, he tried a variety of anti-nausea meds and also different combinations of them with varying success and failure. One that he was given as the nausea progressed was Buccastem which I think is a product name for Prochlorperazine. Dad was given this as he could not keep his meds down and also could not keep his food down either. This worked a bit for him as you dissolve it under your tongue so you dont hae to swallow it. Has Nancy tried this one?

I posted quite a lot about my dad so you can search for my posts using the search function here and entering my name as the author. I wish that there was some more that I could say to you right now that would be of help to you and Nancy.

My best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: How Do You Know If Your In The End Stage?

Dear Steve, I am very sorry to hear what you're both going through.  My sister has quite a lot of nausea & her fatigue is also extremely debilitating.  We've wondered whether she's dehydrated because she drips with sweat so much of the time.  She was prescribed Fortisip when she couldn't eat but Nancy may not be able to keep that down, either, as it's in drink form.

I'm thinking of you both & send my very best wishes.

Julia

"Time may be a great healer, but it's a lousy beautician."