lbj....I can't imagine the roller coaster of emotions you must have on a daily basis. But it ain't over till it's over. I know your doctors have given you a time frame but it's very possible you will outlive a lot of us "healthy" folks. It happens everyday, no reason why you can't be one of those that beats this. Take care of yourself physically and emotionally. I think about you often and I'm rooting for ya brother.

lbj I'm not having any luck finding that guy I mentioned but I'm not gonna stop trying. I the info in the link is the treatment he was talking about though.

http://www.fiercebiotech.com/s...rolizumab/2014-09-04

Glad to hear you are feeling a little bit better. That is always a good thing.

Today, we finally get to meet the doctor in charge of my case.

It will be our first meeting.
I kind of dread it, but have a lot of questions.

My weight has climbed up about 4lbs the last week or so.
Food tastes terrible but I have forced myself to eat. It seems lately my body, despite the fact everything tastes bad, seems to be demanding nutrition currently.

quote:

Originally posted by lbj:
My weight has climbed up about 4lbs the last week or so.

Excellent

Yeah, I am closing in on 160lbs.

For now, it seems the weight loss part is in check.

Something that might help the nutrition side is Met-Rx. It's a meal replacement powder that was originally developed to help burn victims IIRC but found favor in sports and bodybuilding. It's low calorie high nutrient but if you mix in some peanut butter or half and half it'll boost the caloric number without making the volume unbearable. If you get vanilla you can try to flavor it any way you wish in hopes that something won't taste awful.


www.metrx.com will give you all the info you need. I used it and it doesn't have much in the way of non natural ingredients. Might be worth asking the doctor or a nutritionist about it. It's readily available on Amazon.

We're gonna get you going on the Cheesecake and Premium Ice Cream Diet, lbj. In no time at all, we'll have the floorboards of your home dreading your approach.

We are not there with you, but we are here with you, all of us.

Maybe some funnel cake and fried Snickers bars?

I think the answer is bacon. That always seems to be the answer for weight gain. God Bless you, brother.

quote:

Originally posted by parabellum:

We are not there with you, but we are here with you, all of us.

+1
Couldn't have said it better.

Bacon = tasteless, so are most food items. The Votrient is the cause for the taste problem.

Chocolate and other sweets do have some taste.

I have also added Insure Plus Nutrition Shake to my diet the last week or so.
They are easy and quick to down. They have 350 calories per bottle. I actually like them.

While the calories from the drink are not exactly as good for me as food is, they seem to help.

I have a colleague working with this study for the treatment of Renal Cancer. You can go to Clinicaltrials.gov to see if there is a center close to you. Studies usually pay for the meds and a lot the procedures. Plus docs doing studies usually have a better than average grasp of treating the disease of study.

Clinical Study Evaluating Dalantercept in Combination with Axitinib Now Enrolling Advanced RCC Patients Nationwide

If you are battling kidney cancer, otherwise known as renal cell carcinoma (RCC), The DART Study may be the next treatment option for you to consider. Dalantercept, in combination with axitinib, an FDA approved therapy, aims to halt the growth and spread of RCC.

The DART Study is testing the safety and efficacy of dalantercept in combination with axitinib and is now enrolling patients with RCC nationwide.

Eligible participants must have:

A diagnosis of advanced renal cell carcinoma (RCC)
Received treatment with only one VEGF-pathway inhibitor such as sunitinib (Sutent), pazopanib (Votrient), bevacizumab (Avastin), sorafenib (Nexavar), cabozantinib (Cometriq), or tivozanib
Other prior therapies permitted but not required for participation include:

Either everolimus (Afinitor) or temsirolimus (Torisel)
Immunotherapy (therapies targeting the immune system)
Contact us today to see if you qualify:

855-7STUDY7

What is The DART Study Testing?

For cancer cells to grow, they need blood vessels to supply them with key nutrients; this process is called angiogenesis. Dalantercept and axinitib are both anti-angiogenic agents, which means they are thought to block the growth of blood vessels supporting the cancer cells.

The main goal of The DART Study is to determine whether dalantercept combined with axitinib is more effective than axitinib alone at preventing the growth and spread of renal cell carcinoma.

Acceleron Pharma aims to transform the lives of people suffering from cancer and orphan diseases through the discovery and development of more effective therapies.

Since its founding in 2004, Acceleron Pharma has distinguished itself as a world-leading developer of drugs to target various pathways of the transforming growth factor beta proteins (TGF-β). These proteins play a critical role in the growth and repair of tissues throughout the human body.

quote:

Originally posted by mrbill345:

quote:

Originally posted by parabellum:

We are not there with you, but we are here with you, all of us.

+1
Couldn't have said it better.

Damn straight

quote:

Originally posted by parabellum:

We are not there with you, but we are here with you, all of us.

AMEN!

Good luck with the doc visit, lbj.

Do they have blue bell in Colorado? If not, I will send you some.

Nothing really newsworthy from the doctor visit.
I go in for blood tests in a month, then sometime in mid to late May get a CT scan to compare to my old one.

I am doing Breyers chocolate ice cream which is pretty good.
I typically fill a tall glass with scoops, add some milk, stir, a kind of thick milkshake I eat with a spoon.

so its more of a sink rather than a float?

Yes, pretty much.

The doctor did say if I decide to stop treatment, 6 to 9 months.

The Votrient I am taking will eventually stop working as the cancer will eventually figure out a work around, then we would have to move on to something else like Optivo.

It appears that the immuno therapies available only work temporarily and then lose their effectiveness.