Friday, August 13, 2010

Sutent Nation welcomes Liz

Back in 2006, when I was still statistically supposed to stay cancer free forever because my kidney tumor was "caught in time" I attended a kidney cancer patient support meeting at a local cancer support center.  The speaker was a young doctor from Cleveland Clinic named Brian Rini.  (cue foreshadowing) He spoke about the newest advances in drug treatment for metastatic kidney cancer.  At that point one drug, Sutent, had been approved and a couple of others were close behind in the FDA approval process.  He explained how the drugs were meant to work - they are anti-angiogenesis agents, which means that they stop the creation of new blood vessels to tumors.  No new blood vessels = no nutrition for tumors to grow.  The patient survival statistics he gave didn't sound all that great to me; I didn't know at the time that so early on in the drug's life, they just didn't have long term results yet, and didn't stop to think that many of the participants in the clinical trials were probably people who were very sick, looking for anything to try.  I remember coming home that evening and telling Jim that I sure hoped I would never need drug treatment because Dr. Rini's talk had scared the bejeezus out of me; there was no 'curative' chemotherapy available and so the choices sounded frankly pretty crappy.

Fast forward 4 years... in that time I had a lung nodule scare, which caused my uro-surgeon to send me to an oncologist... the first appointment available being with one Dr. Brian Rini.  The nodule turned out to be nothing and I enjoyed another 2 years of NVED status.  That joy was blown away by finding single metastases in July 2008 (surgically removed), Nov 2008 (surgically removed). July 2009 scans brought the motherlode - multiple lesions in the liver and a lesion on the ovary.  Goodbye surgery, hello High Dose Interleukin-2.  The IL-2 appeared to do wonders for the liver mets but the ovarian mass continued to grow, decided to balance things out by appearing on the other ovary, and just for fun, adding a mass that attached itself to my colon.   Last week's surgery caused me to go through menopause in 3 hours, but while my surgeon was able to remove the ovaries and their masses, he chose to leave the abdominal one behind.  His thinking was that I was going to need drug therapy, so opening me up to remove that mass would have caused me a much longer recuperation period before I could begin drug therapy.  (Oh and there's that pesky little business about how I would have had a temporary colostomy to deal with.) 

Dr. Rini and I met today, to truly discuss drug therapy for the first time.  He was in agreement with Dr. Drake's surgical decision.  At this point it's clear that as much as we chase the cancer around my body and pluck it out, there are still cells in there, waiting for their chance to be "alpha dog".  A couple of years ago I would have been willing to continue the chase, but even thick-headed me sees that it's never going to be the 'last one' removed surgically.  So, the question became, what drug would he recommend?  When we first talked about drug therapy last year, he recommended either Sutent or a clinical trial of two other drugs.  Prior to today's visit, Jim and I discussed what options I might be offered this time, and Jim said what I was thinking... no clinical trials right now.  Dr. Rini didn't mention trials this time anyhow.  He felt that my best options right now would be Sutent, which is considered the gold standard for renal cell carcinoma, or a similar but newer drug called Votrient.  Votrient is believed to maybe have fewer side effects than Sutent, but because it's so new, there's not much data on whether it's also more effective than Sutent.  Dr. Rini started off by saying he had no real leaning toward one or the other, but it became clear as we talked that if he had to pick for me, he'd pick Sutent, which is what I did choose.  He did also mention that since the liver mets are stable (except for the one that shrank, yay!) and the abdominal mass left seems stable, I could wait 3 months and re-scan before starting treatment.  He and I both shook our heads "no" at that idea.  Drugs are inevitable, and waiting 3 months might be okay, or might be a fertile breeding time for my cancer cells.  After all, I had clean scans in April of 2009, and all hell broke loose as a result of July's scans.

I need to do some more healing from my surgery, as stopping my body from creating blood vessels might not be a good idea while it's trying to mend.  Next week I will be going for scan-o-rama day on Tuesday... CT of head and chest, MRI of abdomen and pelvis.  When we talked in May, Dr. Rini told me that he'd probably have me do MRI of abdomen and pelvis from now on, and a chest xray.  I was surprised by that, and folks I know in the kidney cancer community were insistent that I should be having CT of the chest instead.  I asked him about it today and as I suspected, he's mostly concerned about the amount of contrast I'm having to take (not good for kidneys!) but agreed that we'd get a CT this time for a baseline.   I'll then see Dr. Rini on 8/25 and we'll decide when I start taking the Sutent.

It's an orally administered drug, so no having to go to the cancer center and be hooked up to an IV periodically.  The dosing schedule is 28 days on, and then 14 days off.  After two of those cycles I will have scans for comparison.  If side effects make me too miserable, we'll look at changing the dosage.  I asked Dr. Rini if it was reasonable to be able to keep working throughout treatment.  He said absolutely, that was the goal, and that having the drug help get rid of the cancer isn't worth it if you are too sick.  I was glad of that.  Another thing I thought was cool was that as soon as we decided on Sutent, he paged a financial counselor to look into what my health insurance copay will be for the drug.  I like that he was concerned about that aspect of the treatment; these drugs are EXPENSIVE.  I'll find out next week just how expensive for us. 

The side effects are just lovely; from the Sutent site they are listed as follows:

Common side effects

Patients who take SUTENT have these side effects more often than other side effects:
  • The medicine in SUTENT is yellow, and it may make your skin look yellow. Your skin and hair may get lighter in color
  • Tiredness
  • Weakness
  • Fever
  • Gastrointestinal symptoms, including diarrhea, nausea, vomiting, mouth sores, upset stomach, abdominal pain, and constipation. Talk with your healthcare provider about ways to handle these problems
  • Rash or other skin changes, including drier, thicker, or cracking skin
  • Blisters or a rash on the palms of your hands and soles of your feet
  • Taste changes
  • Loss of appetite
  • Pain or swelling in your arms or legs
  • Cough
  • Shortness of breath
  • Bleeding, such as nosebleeds or bleeding from cuts
I know many fellow kidney cancer patients who have had various combinations of the above; there's lots of information they have already and will share about combating these effects.  

Sounds like a treat, doesn't it?  I'll admit, I'm a bit scared that we've arrived at this point.  But I also feel hopeful that we'll see good results with the treatment.  And 5 other drugs have been approved since Sutent, so there are other avenues to try if it doesn't work for me.


minnie said...

A "bit scared"? I'd be running screaming to the hills if I'd read all that Sutend does to you! Sometimes I wonder if knowing all that is good for you. I hope the side -effects are bearable and I will be praying for you. Please believe me when I say I know that it sounds slightly trite to "pray" for someone but that is all that I can do and I will do it with every ounce of faith I have. Sometimes it helps to know that you are being prayed for. It has helped me in the past. God bless.

Sue G said...

I have been on full strength Sutent for over two years. I just found out that it is no longer effective for me and I will be moving on to another, as yet undetermined, therapy. I am a bit nervous about trying something new because I am so used to the Sutent. It is very doable. I had fatigue, some weakness (which I account for more due to not working out anymore rather than the Sutent itself), terrible taste in my mouth, and some diarrhea days (manageable). The other potential side effects did not pose a problem for me as I did not experience them.

I just thought I would write and mention all this to help you understand that not everyone gets all of the side effects listed. Quality of life is very good on Sutent. And when it is effective, it is quite effective.

Blessings to you. May God watch over you in your journey and supply all your needs.

onesillymama said...

Thanks, Minnie and Sue - I appreciate the comments. Sue, I hope your new therapy works even better than the Sutent did while it was working.

Anonymous said... haven't left my thoughts. I pray and think about you, pray and think about you. I'm about to head into an Enwisen meeting without you. I don't even like the thought of it! I think we should make a list of side effects of Enwisen! (hahaha...) When you feel weak....may you feel the strength of love of your friends all around you. We miss you terribly. Keep making tiaras and playing with those girls....the tiara looks good on you! See the world through their eyes and only think like an adult when you have to! Miss you my friend and I pray for good results with meds.

Nina said...

Liz, I am so glad to be able to "see" you here and learn your updates. You write so well.

I want you to know that I think about you a lot, even though I have been a member of the silent majority lately. :P

How was your scanathon? I'm sending more PVs for your healing and the start of this new branch of your RCC odyssey.

All the best,
PS: I love your family photo! A really great moment, there.

Anonymous said...

searching for sutent info on the internet ended up in your blog. First, WIsh you all the luck with the therapy!
I bet you are a not a "silly" mama but a "BRAVE" mama.
I just wanted to share this info with you, there is a clinical trial (phase 3) in the US that provides sutent as part of the study (that helps with the cost) and is testing a renal cell cancer vaccine.
Here is the link, not all patients are eligible, there is some blood test involved... I bet Dr Rini has the study.

Best of luck!

onesillymama said...

Thanks for your comment - that does sound like an interesting trial. I took a look at it and it looks like I don't qualify, as it's been more than a year since my initial diagnosis, and I have had prior systemic therapy - HDIL-2 in 2009. But I appreciate you thinking of me!