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

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Hello All,

The Onc told me the Interleukin did not work (although I am inclined to disagree), so we are moving on to Votrient. The last MRI before the IL-2 was done in February 2012, and the two rounds of IL-2 were done in June, and July. The MRI/PET scan performed after the IL-2 treatment showed slight increase, but I believe the distance between the two scans can account for the slight increase, and the increase didn't occur AFTER the IL-2. I say this because I felt like a million bucks after the side effects from IL-2 wore off. I felt better than I did before the IL-2, and I had mental clarity afterward. I could always tell when I had metasticism because I would have what I describe as brain fog. After the mets are removed-- my head always clears up, and my head cleared after the IL-2.

Well anyhoo, I just began th 1st dose of Votrient last Tuesday. The Onc said it is well tolerated in most people, and he told me to work up to three pills (600 mg) per day, and that most people don't take 4/day. So Tuesday and Wednesday I took 1 pill before bed (someone said bedtime is the best time-- to avoid the nausea), and I immediately felt a little muscle weakness in the legs the next day. I also had a little diarrhea the first two mornings but no problem since then.

Then I bumped it up to 2 pills Thursday and the muscle weakness is gone. I had a bout with nausea and vomiting last night, but I believe it was due to the Naproxen I took for pelvic pain related to a recent UFE procedure. I violated my self imposed rule of staying in good enough health that I don't have to take any other presciption medication while taking Votrient, but I caved-in and took some Naproxen. No more pain killer for me; I can deal with the pelvic pain and it will go away as time passes. I am not nauseated today.

I am still taking 2 Votrient pills before bed, will take 3 beginning next Thursday, and will see the Onc the Thursday after that. I have had no other symptoms yet, and I hope it stays that way.

I should note something very important--

* I began using the Budwig Diet in 2009 and was NED until I slacked off. Then the lung mets showed up in 2011. Wish I could go back and do it right!

* I am now following the basics of the Budwig Diet (organic fruits and veggies, juicing, no meat, no sugar, no oils), but I am not doing the flax portion of it now because of the blood thinning properties of flax and the Votrient side effect that does not allow wounds to heal or slows healing.

* I am taking Avemar/Ave/AWGE in the morning and I start the day feeling great. I began taking it two weeks before I started Votrient. Avemar is supposed to ease side effects of chemotherapy, and help with appetite, as well as help boost the effect of the treatment. Now I have a huge appetite-- so far, so good.

* I drink Essiac tea in the morning and before bed- about an hour before the Votrient. I sarted drinking it about a month ago.

* I do coffee enemas once each month.

* If I start to develop any other side effects, particlarly nausea, I am going to see an acupuncturist.

I work a nine to five desk job every day and I am hoping I will not have any debilitating side effects from the Votrient so I can continue to work and receive these great health care benefits! I have played 18 holes golf regularly, and gone snow skiing each winter since my diagnosis, although I haven't played much golf this summer because of the IL-2 and the UFE.

*************************************************************************************

2009-- Dx w/ stage 4 papillary renal cell carcinoma-- Right rad nephrectomy, IVC thrombectomy, lymph resect- mets in 3 of 9 nodes (I think)
2011-- Video assisted thoracic surgery to remove a single mets in right lung
2012-- Multiple mets in both lungs
2012-- Two rounds of IL-2, showed slight increase in subsequent MRI/PET scan
2012-- Prescribed Votrient

angec's picture
angec
Posts: 615
Joined: Mar 2012

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.  

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

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)

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Great news glad to hear also that the side effects have been manageable.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

So glad to hear the good news Phoenix - YES. Quality of life on the upswing for you and your pooch. The only bad thing I read is you'll have to start paying for those highlights at the salon!

Keep up the good work!

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Phoenix, Wonderful news to hear! This also goes for girlypants. For everyone, this is the news that we all want to hear. It is the hope and aspiration of all of us. It's why we keep the faith. Deal with each hurdle and persist in our quest. The numbers of those improving continues to increase. Let's keep our eyes on the prize!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

PR,

We never get enough good news around here, so glad the "Big V" is working for you. I hope to hear Tex is on the same path very soon. Don't worry about the added light brown hair, you know what they say about people looking like their dogs, ha, ha.

Rock on,

Gary

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Gary, now that you mention it, my eyebrows ARE headed in the same direction as the Rottweiler's eyebrows! Reddish brown!

angec's picture
angec
Posts: 615
Joined: Mar 2012

Phoenix, one more thing. That Avemar sounds like it is very helpful and vital. Did the doctor prescribe this for you or did you get it over the counter? How did you come to know of it? I was VERY surprised reading about this today! It sounds like everyone should take it. It is also helping your appetite? Thanks for the info.

I found this link on it, is this the same thing?
http://betterhealthinternational.com/ave.asp?gclid=COSq4dvq0bMCFQqe4Aod2gcALA

TW, i suppose you should get some soon...

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

I have always believed patients in similar situations make great advisors, so I look at what other cancer, and especially kidney cancer patients say helped them. Then I research the info and make a decision based on what's reasonable and makes sense. That line of thinking always works out well for me.

So... I found Avemar through some kidney cancer patient testimonials, read up on it, and found that it is heavily researched, clinically proven, and recommended by oncologists at Sloan-Kettering. I buy it over the counter.

There are are several Avermar-like products out there, but through reading various websites, the original, tested formula is the one sold through www.avemar.com

Once on the site, click on Avemar Worldwide, click on the country you live in, and click on "where to buy" to find the distributor selling the right product. There are only two distributors in the United States, and only one of them has a website, the other is through email. In the U.S. it is sold as AWGE.

It is definitely helping my appetite. I eat large quantities for my size, and I snack in between. I have to be careful to keep it healthy though!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Actually Ange, I already do. At least I have, for many years, used something similar (maybe superior?) - straight wheatgerm, which, together with milled flaxseed, I sprinkle liberally over my porridge. That's basically all I have for breakfast now, after stopping grapefruit juice now that I'm on Votrient (though the jury's still out on that one!). Avemar has had a huge promotion in the last couple of years in the UK. The one thing that strikes me is that it looks like a horrendously pricey way of eating wheatgerm!!

I use that research algorithm too, Phoenix, and I commend it also. My version is a bit simpler, though - I rely almost entirely on what you say, your postings invariably being highly informative and useful.

Is Rotty your pooch's name? Maybe eats like you so that's why (s)he's always seen to be lying down :) Should maybe take up golf and skiing!

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

The Rott's name is Scorpio and he eats like two of me--

I was using wheat germ, but stopped eating it when I stopped eating glutens- since I thought it might have been exascerbating the Crohn's disease that I later found I did NOT have after being treated for it more than 15 years. Hmph!

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

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.

 

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Glad to hear this Phoenix. Woohoo! Next goal --reduction; after that  NED;   and then back into those cute little heels! 

Honestly, really pleased for you.

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Thanks Alice!

And what is life really all about if a lady can't wear cute heels? I've just gotta get to NED, if for nothing else-- the heels!

angec's picture
angec
Posts: 615
Joined: Mar 2012

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!!

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

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!

angec's picture
angec
Posts: 615
Joined: Mar 2012

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

aazbell
Posts: 8
Joined: Feb 2013

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.

 

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Oopsy.

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