2 Surgeries==> then IL-2 ==> now Votrient/Pazopanib

angec

Phoenix Rising said:

New Lab Results In!

Good news!  I had a CT scan and MRI last week, and the doc says my lungs mets and lymph node are stable.   Here are the specifics:

(Scans done with and without contrast)

 

Right hilar lymphadenopathy and, right lower lobe pulmonary nodule, and small right pleural effusion is seen.  The liver is normal in size and configuration.  Small scattered biliary hamartomas are identified. 

 

There is enlargement right hilum compatible with adenopathy, however, comparison is diffucult because lack of intravenous contrast as the node cannot be distinct from the surrounding vessels. It is, however, grossly unchanged from the recent PET CT. 

 

There are a few scattered pulmonary nodules, the largest of which is in the right lower lobe measuring 10 x 7 mm.  Another elongated nodule versus intravascular metastasis is seen.  There is also a stable 5 mm nodule right upper lobe, a 4 mm nodule in the right upper lobe, a 3 mm nodule on the right upper lobe.  No new pulmonary nodules are seen.  There is no pleural effusion (Huh?  I thought they just said above, small r. pleural effusion is seen). 

Postop changes are seen status post r. nephrectomy.  No aggressive osseous lesions are seen. 

 

Impression: 

1.  No change in the pulmonary nodules which are stable since the most recent PET CT new or increased from 2/25/10 exam probably metastasis. 

 

2.  Enlarged right hilar lymph node is difficult ot compare to our exams given lack of intravenous contrast byt is grossly unchanged from the most recent PET CT.

 

 

Another great report!!   Are

Another great report!!   Are you still on the 400 mgs? If so then glad to see it is working. Mom is on that as well.  Only a bit worried because she is losing weight and hasnt been eating. She lost 11 pounds in two or three weeks.  Are the side affects still tolerable for you?  Keep up the good work, hoping for NED for you but will take stable any day!!

aazbell

Max Power said:

side effects
I too had the common splinter hemorrhages and the doc's didn't think it warranted any action. Wouldn't it be nice if they gave you a list of side-effects so we didn't have to be surprised and run to Google!

Also, be prepared for your hair to turn pure white. When I got off Votrient my hair was all white and started growing dark again, but then when I started Sutent it started getting silver. This made my hair striped. Too funny!

Hair color

I went through 4 rounds of Sutent until it quit working and now I've went through a month of Votrient.  My hair turned silver with the Sutent and the two weeks that I was off turned darker then my original color.  I was off the meds for six weeks and then it went darker again.  I have heard that it will turn white with the Voltrient.  So now I can have poka-dot and strips.  I lost a lot of hair with the Sutent.  So far not so much with the Votrient.  I have papillary renal cell.  Is anyone having any luck with treatments?  I've been on Avastin also.

 

Phoenix Rising

Oopsy.

Oopsy.

Phoenix Rising

angec said:

Another great report!!   Are

Another great report!!   Are you still on the 400 mgs? If so then glad to see it is working. Mom is on that as well.  Only a bit worried because she is losing weight and hasnt been eating. She lost 11 pounds in two or three weeks.  Are the side affects still tolerable for you?  Keep up the good work, hoping for NED for you but will take stable any day!!

Still on 400mg

Hi Angec,

I am still on 400 mg and the Onc says increasing it will only increase the side effects, so I will stay at 400 mg.  The side effects are still tolerable, but I have forgotten what is feels like to be 100%.  I long for it, and I'm working toward it. 

You may want to look into Avemar for your mom.  It makes me have a very healthy appetite and while I have not gained weight, I haven't lost either.  Thanks for the positive reinforcement!

Phoenix Rising

aazbell said:

Hair color

I went through 4 rounds of Sutent until it quit working and now I've went through a month of Votrient.  My hair turned silver with the Sutent and the two weeks that I was off turned darker then my original color.  I was off the meds for six weeks and then it went darker again.  I have heard that it will turn white with the Voltrient.  So now I can have poka-dot and strips.  I lost a lot of hair with the Sutent.  So far not so much with the Votrient.  I have papillary renal cell.  Is anyone having any luck with treatments?  I've been on Avastin also.

 

Also papillary type

Hi Aazbell-
I have the papillary type, as well, and so far the Votrient is the only thing that has worked for me-- and by "works," I mean it is keeping me stable.

angec

NanoSecond said:

Sugar & Cancer

Hi Angec,

Very pleased you are going to check out the video.

Do read Gary Taubes piece as well.  It will take less time (the video is 90 minutes long), but, more importantly, at the end he spells out the connection to cancer.  Here is a portion of it (and show it to those doctors in the hospital):

"Now most researchers will agree that the link between Western diet or lifestyle and cancer manifests itself through this association with obesity, diabetes and metabolic syndrome — i.e., insulin resistance. This was the conclusion, for instance, of a 2007 report published by the World Cancer Research Fund and the American Institute for Cancer Research — “Food, Nutrition, Physical Activity and the Prevention of Cancer.”

So how does it work? Cancer researchers now consider that the problem with insulin resistance is that it leads us to secrete more insulin, and insulin (as well as a related hormone known as insulin-like growth factor) actually promotes tumor growth.

As it was explained to me by Craig Thompson, who has done much of this research and is now president of Memorial Sloan-Kettering Cancer Center in New York, the cells of many human cancers come to depend on insulin to provide the fuel (blood sugar) and materials they need to grow and multiply. Insulin and insulin-like growth factor (and related growth factors) also provide the signal, in effect, to do it. The more insulin, the better they do. Some cancers develop mutations that serve the purpose of increasing the influence of insulin on the cell; others take advantage of the elevated insulin levels that are common to metabolic syndrome, obesity and type 2 diabetes. Some do both. Thompson believes that many pre-cancerous cells would never acquire the mutations that turn them into malignant tumors if they weren’t being driven by insulin to take up more and more blood sugar and metabolize it.

What these researchers call elevated insulin (or insulin-like growth factor) signaling appears to be a necessary step in many human cancers, particularly cancers like breast and colon cancer. Lewis Cantley, director of the Cancer Center at Beth Israel Deaconess Medical Center at Harvard Medical School, says that up to 80 percent of all human cancers are driven by either mutations or environmental factors that work to enhance or mimic the effect of insulin on the incipient tumor cells. Cantley is now the leader of one of five scientific “dream teams,” financed by a national coalition called Stand Up to Cancer, to study, in the case of Cantley’s team, precisely this link between a specific insulin-signaling gene (known technically as PI3K) and tumor development in breast and other cancers common to women...

“I have eliminated refined sugar from my diet and eat as little as I possibly can,” Thompson told me, “because I believe ultimately it’s something I can do to decrease my risk of cancer.” Cantley put it this way: “Sugar scares me.”

 

Nano, thanks for the info.

Nano, thanks for the info. After reviewing all of the formation I k ow this to be correct.  In fact, i have known about the sugar / insulin connection to the progression of cancer for a while.  I personally feel the Information is spot on.  

angec

Phoenix Rising said:

Still on 400mg

Hi Angec,

I am still on 400 mg and the Onc says increasing it will only increase the side effects, so I will stay at 400 mg.  The side effects are still tolerable, but I have forgotten what is feels like to be 100%.  I long for it, and I'm working toward it. 

You may want to look into Avemar for your mom.  It makes me have a very healthy appetite and while I have not gained weight, I haven't lost either.  Thanks for the positive reinforcement!

Thank you!  I will I deed

Thank you!  I will I deed look into it.  I have tried to get her to put the toppings on her ceReal or oatmeal but she doesn't like it.  400 mgs seems to work also and you really have to work with your body.  Keep up the good work!!  Xxoo

NanoSecond

angec said:

Nano, thanks for the info.

Nano, thanks for the info. After reviewing all of the formation I k ow this to be correct.  In fact, i have known about the sugar / insulin connection to the progression of cancer for a while.  I personally feel the Information is spot on.  

Proper Hydration

Hi Angec,

I am glad you agree about that information.  Digging further though, why was your Mom taking Gatorade in the first place?  For hydration - or for another reason such as weight gain?

If it was for hydration due to a loss of electrolytes I suspect the best thing for her might be Pedialyte:

http://pedialyte.com/

This stuff does contain glucose (as Dextrose) but the manufacturer claims the amount included is only enough to vacilitate getting its other nutrients absorbed in the gut.  Regardless, there is no fructose in it and that is the bad stuff.

An excellent source of "good" calories is whey protein.  I don't normally endorse consuming any dairy products at all but whey does not have any casein protein which is the primary cancer-promoting agent found in milk (makes up 87% of it).  Also, whey normally does not have any lactose in it either.

I noted an earlier discussion about Avemar which is a fine product for increasing the amount of NK (Natural Killer) cells in the body.  I personally don't take it because it is made from wheat germ, but that is just me being a bit concerned about Gluten.  Instead I take a mix of Shiitake, Maitake, and Reishi mushroom concentrate which can give similar results.

I suspect you have done a fair amount of research on these and many other topics regarding proper nutrition.  If so, you might be interested in what I am doing regarding my diet and certain supplements I take.  It's a long .pdf document so if you email me privately at: n.feldman@videopost.com I would be happy send you a copy for your consideration and any comments.

Best wishes,

 

-NanoSecond (Neil)

aazbell

Phoenix Rising said:

New Lab Results In!

Good news!  I had a CT scan and MRI last week, and the doc says my lungs mets and lymph node are stable.   Here are the specifics:

(Scans done with and without contrast)

 

Right hilar lymphadenopathy and, right lower lobe pulmonary nodule, and small right pleural effusion is seen.  The liver is normal in size and configuration.  Small scattered biliary hamartomas are identified. 

 

There is enlargement right hilum compatible with adenopathy, however, comparison is diffucult because lack of intravenous contrast as the node cannot be distinct from the surrounding vessels. It is, however, grossly unchanged from the recent PET CT. 

 

There are a few scattered pulmonary nodules, the largest of which is in the right lower lobe measuring 10 x 7 mm.  Another elongated nodule versus intravascular metastasis is seen.  There is also a stable 5 mm nodule right upper lobe, a 4 mm nodule in the right upper lobe, a 3 mm nodule on the right upper lobe.  No new pulmonary nodules are seen.  There is no pleural effusion (Huh?  I thought they just said above, small r. pleural effusion is seen). 

Postop changes are seen status post r. nephrectomy.  No aggressive osseous lesions are seen. 

 

Impression: 

1.  No change in the pulmonary nodules which are stable since the most recent PET CT new or increased from 2/25/10 exam probably metastasis. 

 

2.  Enlarged right hilar lymph node is difficult ot compare to our exams given lack of intravenous contrast byt is grossly unchanged from the most recent PET CT.

 

 

Great News

I am so glad to hear that you are having good results with the Votrient.  I am going to try some of your other ideas.  I havn't had much good news sense this whole thing started in September of 2011, but I keep on trying.  My Oncologist said that there is a new treatment that looks promising.  XL 184.  I hope that you continue with good news.  I'm taking 800 mg a day and the side effects havn't been as bad as Sutent.