Stopping clinical trial

[lorrainem]

Wish you nothing but the best dear Belle, and right now it's best that you stop. As soon as you recover and regroup do something you can enjoy for you, then get back to work on the stupid cancer. Sending love and best wishes to you and your family. You continue to be an inspiration to us all.

[abuttigi]

Belle,

I agree with everything that's been said. You are an incredibly strong woman. Hoping for a miracle in this season as well, and that you feel well enough to enjoy this season with your family.

Best,

Angie

[Lee]

Belle,

So sorry the trial drug was to much. As others have said, you are a strong & brave person and probably took on more than most of us here could have endured. Thank you for all you have shared.

I hope you have a wonderful holiday season with family and friends. And that 2015 brings new promises for you.

Lee

[stevieb]

Thinking of you Belle and wishing you the best!

[Asterix]

Hope you feel better soon Belle, and thank you for participating in this trial, as your experience will contribute the the knowledge of this drug and how it works.

[tammylayne]

Belle...hope you are feeling better and were able to enjoy the holidays with friends and family.

Always in awe of you...

[rp1954]

Belle, have they ever analyzed or named the pleural effusions you are having. I ran across this chylothorax paper, one type of pleural effusion, while reading. So often effusions and ascities seem to reflect a shortage of something that might be delivered nutritionally, if they can identify the problem specifically.

[NWgirl]

Belle, have they ever analyzed or named the pleural effusions you are having. I ran across this chylothorax paper, one type of pleural effusion, while reading. So often effusions and ascities seem to reflect a shortage of something that might be delivered nutritionally, if they can identify the problem specifically.

I don't know. All I know is they tested it for cancer - negative. I think it's a side effect of the trial drug - part of that Cytokines Release Syndrome that DK mentioned previously. That said, could it be continuing because of some nutritional deficiency? I don't know. My oncologist has no experience personally with immunotherapy drugs but he knows the oncologist who runs the trial so they can talk. Hopefully they can come up with some answers. I just want it to stop. It's painful and resolving it is even more painful.

[Maia]

That said, could it be continuing because of some nutritional deficiency?

Belle, if you want to give it a try to what rp1954 is saying, that would mean that you should lower (or eliminate) all saturated and trans fats of your diet, during a time, and use only medium-chain triglyceride (MCT) fats. Which means: try and use coconut oil in all. Don't use whole milk, cream, ice cream, whole-milk cheeses, meats with fat (beef, poultry with skin, or lamb) (all that is saturated fat) or (worse) margarine and all the stuff with trans fats (all those manufactured cookies, crackers, donuts, french fries, etc.).
(If you want an explanation: it may seem silly and little, but it makes sense. The MCT fats (say, coconut oil) are absorbed directly into the portal venous blood; instead, saturated and trans fats are absorbed via the lymphatic system. If one 'gives a vacation' to the lymphatics, you're creating favorable conditions for healing of the effusion. It's the way that kind of pleural effusion (chylothorax) that rp1954 mentioned is treated in children (1974) and also the recommended diet for those adults who had a pulmonary resection and mediastinal lymph nodes taken off (2014)

I had to read a bit about fats because, sadly, my daughter has epilepsy and ketogenic diets (based on fats; one of them, MCT based) are one of the treatments for that condition. Also, I had pleurisy past month so I had to remember about MCT. I think it helped me to finally get better...

Nobody says it's a cure but, for a while, it can't hurt if you eliminate the saturated fats and use coconut oil, and it may help to heal...

[NWgirl]

I'm not a big dairy fan, but give up my sweets!? Oh Maia, how could you suggest such a thing!

Although I eat very little now, I do feel better when I choose healthy options and less well if I eat junk.

I'll keep this in mind and try to stick with healthier choices.

[Maia]

but give up my sweets!? Oh Maia, how could you suggest such a thing!

Ahhh, no, no, you just enjoy your sweets! I didn't want to sound like a food nazi. It's only about saturated and trans fats, no even sweets. And I said, "for a while", to hopefully give you an upper hand in this crisis. And maybe someone can cook something yummy for you with sugar *and* coconut oil... Good ole homemade food, a little pampering for you.
And of course don't give up beer and wine! A girl needs some joy

[NWgirl]

Yeah, that's another draw back of doing this trial. My body just doesn't want alcohol of any kind and nothing acidic - which means no coffee!!!!!

So I have little to no appetite, no alcohol, no coffee, back pain, shortness of breath, nausea - enough already!!!! I want to feel at least close to normal again.

[elise]

Belle, I'm so sorry. You are such a strong woman, I have no doubt you gave it your all. Rest and then make decisions.

(((HUGS)))

Elise

[Maia]

Ah, that sucks, Belle. Elise is totally right -just rest and that's all. ((hugs))