Brian started his Chemo last Monday. So far we have been lucky, not too many side effects.
The doctor said he is now down to 124lbs. (he started about 178lbs in October) The oncologist said last week that at this rate that he will not last much longer. I asked them about TPN. They told me that they would talk to the surgeon and hopefully he could start on that. After a week and we have heard nothing, I called the doctor back today. He tells me that they will not do TPN, they said although it will "substain" him, that because the cancer is so far advanced that they are not willing to do this???? I'm not sure I understand the logic of this. He explained it like this......It is like someone is pouring cement into the bowels and as they are doing this, the cement is harding. I asked him what can be done, they tell me nothing. They even want to talk to him Monday about stopping the Chemo. They say that he is too weak and they don't feel it will benefit him.
I am angry, mad, sad and anxious. I can't understand any of this. In October, it was just some pain in the stomach, "Gas" the doctors say. How does this go to a bowel obstruction, to advanced cancer to only about 2 months survival. How did we end up where we are now. I wonder what if the doctors would say that the TPN wouldn't be worth it if it was his spouse, mother, father, daughter or son. I have read that the TPN is expensive, who are they to make the decision as to whom that expense is worth?
Two weeks ago they were telling us it was "Carcinoma of the Unknown Primary" Now again they are saying it is "Carcinoma of they are pretty sure it is Colon"
Is it appropriate for me to ask the doctors for all of the medical records?
How am I to sit here and watch my spouse fade away. How is that possible over just a few months. I ask for suggestions, anything that may be helpful. As I look at pictures of us only 3 months ago, I cry, when I look at him today, I can't believe this is happening, I can't believe it is the same person.

jelz, I am so sorry to hear your news....this is terrible and I am horrified that they would not be willing to give him TPN. They sound so cold, as if he is not a person any more. Not being part of your system it is difficult for me to advise you what to do but is there someone else you can talk to about these decisions that are being made without your input or approval. No wonder you are angry and upset. It is disgraceful! I do hope others on the board will be give more practical advice.....I just wanted to give you support.

Take care,

I am so sorry for your news. The only reason I can see for not doing TPN or any other medicines would be if they would make him UNcomfortable. If I were you I would get a second and/or third opinion. Lahey Clinic, Dana Farber/Brigham and Women's come to mind to me. Go to their web sites and call over there. Have his records faxed (You have every right to his medical records!!!). Even if the news is the same, it might give you some solace to know that you tried other avenues. I cannot imagine what a rollercoaster of emotions you are on right now. It is not fair how your life changes so dramatically because of this horrible disease.

Do you have insurance? When I was on TPN it was fully covered by my insurance as well as the visiting nurse who came to train me. Money should not be the overriding issue.

You are in my thoughts and prayers. I hope you are able to get some answers soon... Good luck and keep us posted,
Cats

My suggestion is not so much for your husband as it is for you.
Think about making a call to Hospice and ask to speak to one of their counselors?

What you are facing is scary, impossible to take in, beyond comprehension. Hospice has real experience in what you are dealing with. This stage of cancer is something that they can speak about from not just a medical standpoint but from an emotional one.
Something that you clearly are not getting from the medical community.

Cancer is not necessarily a forgiving curable disease yet. My Dad had a colonoscopy every year. He started with a "mass" in his colon at the end of a September and died the following February.
Did we do everything we could medically in those 4 months?? Of course! 2nd opinions too. Chemo, radiation.
We hoped for that miracle. That cure.
By the middle of January we found that what we were hoping for was that he be free of pain and at peace.
We were granted that last hope, and received a bit of peace ourselves knowing that he had fought the fight and was comfortable and surrounded by his family at the end.

I don't mean to go on about this when what you are looking for is a cure - a treatment - and yet I want you to know that you can be angry, you can blame God and/or the doctors, and yet Cancer is just like this sometimes - an event like an earthquake beneath our feet.

Please keep hoping - And spend every moment letting him know how much he means to you - that's whats most important no matter what the circumstances...
:angel:

I cry, when I look at him today, I can't believe this is happening, I can't believe it is the same person.

Your grief hits me hard. You made a good point about asking if the doc would treat his family the same as in your case. I was diagnosed as terminal and I asked my oncologist that question at our first visit. I ask my docs that almost every time I see them. Did you ask your doc that?

I am praying for you and your spouse. Ruth's advice is what I would say as well. Be there for him. Love to you and I hope you find strength during this trying time.

Dear Jelz,

I read your post 3 times trying to desperately find the words that might offer you some sort of comfort, or at the very least offer some sort of useful suggestion, but still everything I think of seems so inadequate.

I know it is very difficult to find some ME time in between being with your husband and doctors appointments and so forth, but please try and find some time to take care of yourself during this really difficult time.

You haven't said whether your husband is aware of what those cold hearted (dare I say doctors?) are recommending or whether you are bearing the brunt of this yourself? Ruth's suggestion of contacting a hospice is a great one and will not only help you in practiable matters, but they will also help you try and deal with this horrible situation as well.

You are in our thoughts.

maria_z :wave:

Oh Jelz, my heart goes out to you. I did a little research on TPN. If you get on Medline and look up "colon cancer" and TPN, it seems it does not increase survival and in some cases even decreases survival. I would block copy the research here but think it is against the rules.

Contacting hospice is a good idea... They are not just for care but for emotional support as well. For hubby as well as YOU. I'm sorry your docs are so chilly; it's likely they're uncomfortable imparting bad news and do it in a cold and impersonal way to avoid having to deal with it themselves.

You're in my prayers.

Michelle

Jelz, how are you doing? I hope you can let us know about you and your husband. You are in my prayers, and a huge cyberhug is going out your way...
Ruth
:angel:

ok.. I dont even know what TPN is, but I agree about trying to get another 2nd. 3rd opinion. Im not sure if Ive missed your postings somewhere else but have they told you what stage he is at??
I just wanted to give u a big hug... I cant tell you everything will be alright, but that you do have support here.
Take care of you.
((Hugs))
Maz

Hi Jelz, hope you know that we're all pulling for you and that you and Brian are in our prayers...
Ruth
:angel:

I tried to talk Brian into getting a second opinion but he won't. He is quite aware of the situation although I did get a chance to talk to the doctor on my own last week. The told me that the cancer is through both bowels but also is peritoneal.
I have a question about something that I am not even sure I can discuss on this site. Brian's parents are both about 80 years old. They have a neighbour who has cancer who does have a perscription for pot. I have alot of mixed feelings about this. Brian seems to feel that this would be okay, he tells me that because it is much less addictive then moriphine that there is nothing wrong with it. I don't want to see him in pain but on the other hand, from what I read, the only thing it seems to help is with nausea (which he doesn't seem to have) I also have a 14 year old that I would have no idea how to explain this to. Once other problem is I do notice when he smokes it he becomes hungry and eats everything in site then pays for it for 3 days. (I mean in bed sick)
I need some input on this.

Jelz, I'm so glad that you were able to let us know how things are going - I know that we'd all love the news to be better.
I'll be honest, your situation with the pot is a difficult one for me. Part of me is saying "Whatever he wants". The other is that in most states it IS illegal and there's the 14 yr old to consider.
On top of that, morphine IS legal and while I don't know how to put this gently, addiction is most likely not an issue for most people with late stage IV colon cancer. Morphine is considered palliative care at that point and a blessing as far as my family was concerned with my Dad.

Is Brian still getting any chemo?
How are YOU doing??? I was hoping that you would check back in - I got to worrying since you were so understandably upset last we talked. Do you have someone to talk to about all of this?
You've got a big hug here ,
Ruth
:angel:

Absolutely get copies of the medical records. They will have all the info on your husband's diagnosis, stage, etc. If nothing else this info will give you some insight to begin your own research as to possible treatments, therapies and so on. I agree on getting a second oppinion also the records will be available for you to copy or fax to other institutions to see what they advise. Do not take no for an answer when it comes to dealing with your loved ones life. In the end you will know that at the very least you did all you could. Just having all the info helps us to see the bigger picture. Get records, go online, go to your library, or anywhere else you can to do your research on your loved ones diagonosis. This way you will have an arsenal of information which will help you when dealing with the Doctors. Being more informed allows us to ask questions we would normally not think of to ask. I will be praying for you and your loved one as well as all the other people dealing with this, and all other cancers. :confused: