Latest message from Nancy

LaundryQueen said:

Thanks for the feedback
Carlene: Thanks for following up on the TPN issue. In my opinion, Nancy is kidding herself about getting her protein requirements met orally. Because of all the ascites that Nancy is having drained off, I think that Nancy is canabalizing her muscle tissue--that includes heart tissue (another source of protein for the body to tap into when someone is in the condiditon Nancy is in).

Nancy had so much ascites drained--ascites is full of protein! It sounded like Nancy had a port put in so that she could continue to drain the ascites--there's more protein lost.

This situation is a slippery slope: the lower the plasma protein level gets from the protein loss via ascites, the lower the osmotic pressure where the body cannot keep fluid in the venous circulation, therefore, the more fluid leaks into the belly, consequently, the more ascites needs tapped off...you get the picture. This has very little to do with Nancy's activity level or what Nancy is eating. If you ask Nancy how her muscle tone is in her legs & arms, I wouldn't be surprised if she is shrinking & Nancy wasn't a big person to begin with.

Cancer makes a protein-blocking substance that makes it difficult for the liver to synthesize adequate amounts of the necessary plasma proteins, that's why you find people dying of cachexia (wasting away like Jayne did before she was gone) and will do so even if their cancer isn't that extensive.

You may not want to share any of this with Nancy--you are a good friend to her. OR you could just ask Nancy if she knows what her "prealbumin level" is. If the prealbumin level is more than 20, then Nancy is doing fine. However, I think she has no idea how bad her state of malnutrition is and I would be surprised if her doctor has even checked the prealbumin level. I would LOVE to be wrong about this. Please tell me that I am and I will be elated. Hahahaha!

Try doing a Google search on prealbumin levels and cancer survival rates--it's important enough of a a subject that there is research on it. The survival rate is pretty grim when the prealbumin level is less than 10. That's why I am making such a big deal about this--you probably think I am over-reacting about this but I cannot help it. Forgive me.

I have a personal opinion that the ascites is a bigger problem than MOST oncologists are aware of and poor management of the ascites contributes to the dismal survival rates for those of us riding the teal bus.

I think that, despite her medical eductation, Nancy can't possibly be thinking straight at this time due to the pain meds. AND most nurses are ignorant about prealbumin levels--that's something dieticians would know more about.

What I think Nancy needs is just IV amino acids (probably every other day) but most doctors won't just give just Aminosyn IVs, they go all the way with TPN (which messes up the blood sugar). I was on Aminosyn & lipids for several months and I think it helped save my life. I know TPN helped save your life, Carlene.

If you think sharing this information will only upset Nancy amd do no good whatsoever, then I respect that you do not pursue the TPN issue with Nancy any further.

I am not an oncologist, or even a doctor. All of the above is just my personal opinion (I learned a lot of this from the integrative osteopath who is treating me) and I couldn't live with myself if I didn't share it.

Now I'm done with the subject.

LQ

I did mention TPN to Nancy
I did mention TPN to Nancy and her care is being directed by an outstanding team of specialists from MSKCC. I have a lot of faith in Dr Sabbantini. I also think Nancy has a great support system, and I really believe every viable option will be explored and addressed.

TPN for advanced cancer is not alwaya a good idea. I found a number of studies that concluded the risk of complications outweighed the potential benefits. Weight loss with advanced disease is significantly more complicated, according to these studies, than simply replacing calories, as cancer produces a multitude of chemicals that also lead to weight loss.


Carlene

LaundryQueen said:

Thanks, Carlene. I think
Thanks, Carlene. I think it's the glucose in the TPN that is the problem (causing insulin spikes & promoting inflammation thereby promoting cancer). I'm gonna see if there is any research on amino acid replacement in cancer patients.

Drat! I promised that I would drop the subject! OK, I mean it this time.

LQ

It's ok. I think it's fine
It's ok. I think it's fine to promote any information you might find.

Amino acids are virtually always included in TPN, I believe. My TPN was made up outside the hospital and delivered each night at 9PM (I called it the world's most expensive take-out food). It was a "standard" TPN solution, to which they added a lot of fat/calories because I was unable to eat. I lost over 30 pounds in the 16 days I was hospitalized.

Carlene