Renal Cell Cancer Survivor and Votrient Side Affects

Bobcoos

I am an USAF retiree.  I retired from active duty in 1990.  During the Christmas Holidays of 2007, the onset of RCC or Kidney Cancer occurred out of the clear blue sky.  My 'About Me" page has more information about this.

Since the day of diagnosis, I have survived RCC three times.  I am now on an 800mg Votrient regiment daily due to RCC lesions in my liver, I have been on this med for slightly more than a month.  The only side affect(s), thus far, have been high blood pressure (controlled by Metoprolol) and, most recently, tiredness or extreme fatigue (which I had prior to this recent episode, somewhat controlled by Hydrocortisone).

I just found the csn webpage and was directed or rather guided by God to join.  If I can help but one person who has cancer through my experience and story with RCC then I consider the fact I have RCC as a good thing.  From the onset, I have had a positive attitude along with faith and have thus far survived.  My experience is not a short story so unless requested I will not tell it here.  But anyone interested in it can email me.

Jojo61

Welcome Bob!
It sounds like

Welcome Bob!

It sounds like that kidney cancer has given you quite the ride! Your attitude, great medical care and your faith will certainly get you through this!

Take care!

Hugs

Jojo

foxhd

Jojo61 said:

Welcome Bob!
It sounds like

Welcome Bob!

It sounds like that kidney cancer has given you quite the ride! Your attitude, great medical care and your faith will certainly get you through this!

Take care!

Hugs

Jojo

welcome Bob.

Enthusiasm goes a long way on this forum. Doubts can strike anyone during this trip. We encourage our members to avoid wasting time on negative thoughts as that time is never recoverable. Live forward, live positive, and be thankful every day. We all do this together. We can be quite the vicarious bunch.

jason.2835

Wow

Hey, Bob,

Thanks so much for your service to our country.  Sounds like you have your hands full; sorry to hear about your recent troubles and your wife.  This forum is a crucible of positive thinking; everything else is stripped away until you just have the PEOPLE left.  And we have some GOOD people here.  And a lot of times, people like me find this site as we search the internet trying to learn as much as we can about this disease.  Every voice helps.  Thanks for sharing your story.

- Jay

 

Ed Brabant

Votrient

My hair went white. Came back to a more 55 year old gray man’s color in aboput a year. I also have diarrhea quite a bit. Taking diphenoxylate for that.For the most part that takes care of it. Burn in the sun easier than before. Which stinks because I bass fish as much as I can. Have a scan 5/12/15 get the results the day I fly to Elpaso to bowl in the USBC open. So far so good been 26 months on the Votrient. Thank you for you service. 

ERS4150

Ed Brabant said:

Votrient

My hair went white. Came back to a more 55 year old gray man’s color in aboput a year. I also have diarrhea quite a bit. Taking diphenoxylate for that.For the most part that takes care of it. Burn in the sun easier than before. Which stinks because I bass fish as much as I can. Have a scan 5/12/15 get the results the day I fly to Elpaso to bowl in the USBC open. So far so good been 26 months on the Votrient. Thank you for you service. 

votrient

Hello,

My husband was diagnose last June, after finding the cancer in his ankle.  Actually, it has caused a stroke in April, but at the time, the neurologist said the stroke was a fluke.  When my husband was sent to radiology, I pressed that his MRI results be evaulated by a neuro onchologist?   Of course, it was confirmed that RCC has caused his stroke and he did have leisons in his brain.  The scans revealed that he has cancers in his lower left lobe of lung and left kidney and nodes.  Since then, he was placed on Sutent which did shrink some of his cancers, but follwing a two week cycle off, we decided to go check out Cancer Treatment Center in Tulsa, this past Feb.  We were told by onchologist the cough that was producing blood at thebtime was a normal side affect and that the open wound from his ankle incision was normal.  We said that the center could perform a COLD laser treatment that our current treatment couldn't provide.   During our trip,  the laser treatment started having immediate results,  plus the bloody cough wad treated with a bronchoscopy.   Apparently,  we the kidney cancer is known to create blockages in his passages,  so this is why he eas coughing up blood.  Now my husband has a pulmonary doctor, but we couldnt continue with CTCA due to cost of treatment, plus logistics.  It did open our eyes on difference of treatment.   Afterward, my husband was plaved on Affinator., taken off Sutent.  His ankle wound hasnt fully healed and we recently learned his adrenal glands tumors are growing.  Last week, we met with a new Onchologist who said, that the cancer hasnt so read and the adrenal glads are still growing.  He suugested looking into clinical trials at MD Anderson, but my husband is not certain, so I think that he should try VOTRIENT?  My husband was a fit 50 year old, but this diagnose has taken its toll on his mental.  He wemt from a relatively healthy 49 year old to this.  By the way, we have two sons,  ages 14 and 11.  Any advice would be greatly appreciated.   Hugs

todd121

Welcome

Hi Bob. Glad to welcome you here (except for the part about why you're here. That I don't wish on my enemies even.)

I can relate to your story, which I read on your profile page. I had a Stage 3 tumor found in late 2012 with similar symptoms and just had my right adrenal gland removed. Fortunately I still have one left, so not having to take hormones. However, I have an aunt who has had Addisons (adrenal insufficiency), so I know very well the problems associated with that.

I've also had issues with the oncologist telling me to see my family doc, and my family doc looking at me with this look of "damn. i don't know anything about renal cell cancer but I'll do the best i can." Being stuck between doctors is one of the pains of having a serious disease I think.

I've had a number of ER visits with various problems since my kidney was removed. I seem to get two different attitudes from the ER doctors. Attitude #1: You're a really (possibly) sick guy, so we are going to take this seriously and run some tests. Attitude #2: You're a really (possibly) sick guy, but there is probably nothing much I can do about it (they don't say this, of course) so let me shine you on with some mumbo jumbo so you get out of my ER and go home because you probably know more about RCC than I do anyway.

Anybody experience those attitudes in the ER?

I'm taking away the message of being positive. I'm doing better the second tumor around than the first. I realize the negativity buys me nothing. Unfortunately, sometimes I just can't help myself and sink into sadness or feeling powerless/helpless. But when I realize what I'm doing, I usually manage to pull out of it.

Thanks,

Todd

Jojo61

ERS4150 said:

votrient

Hello,

My husband was diagnose last June, after finding the cancer in his ankle.  Actually, it has caused a stroke in April, but at the time, the neurologist said the stroke was a fluke.  When my husband was sent to radiology, I pressed that his MRI results be evaulated by a neuro onchologist?   Of course, it was confirmed that RCC has caused his stroke and he did have leisons in his brain.  The scans revealed that he has cancers in his lower left lobe of lung and left kidney and nodes.  Since then, he was placed on Sutent which did shrink some of his cancers, but follwing a two week cycle off, we decided to go check out Cancer Treatment Center in Tulsa, this past Feb.  We were told by onchologist the cough that was producing blood at thebtime was a normal side affect and that the open wound from his ankle incision was normal.  We said that the center could perform a COLD laser treatment that our current treatment couldn't provide.   During our trip,  the laser treatment started having immediate results,  plus the bloody cough wad treated with a bronchoscopy.   Apparently,  we the kidney cancer is known to create blockages in his passages,  so this is why he eas coughing up blood.  Now my husband has a pulmonary doctor, but we couldnt continue with CTCA due to cost of treatment, plus logistics.  It did open our eyes on difference of treatment.   Afterward, my husband was plaved on Affinator., taken off Sutent.  His ankle wound hasnt fully healed and we recently learned his adrenal glands tumors are growing.  Last week, we met with a new Onchologist who said, that the cancer hasnt so read and the adrenal glads are still growing.  He suugested looking into clinical trials at MD Anderson, but my husband is not certain, so I think that he should try VOTRIENT?  My husband was a fit 50 year old, but this diagnose has taken its toll on his mental.  He wemt from a relatively healthy 49 year old to this.  By the way, we have two sons,  ages 14 and 11.  Any advice would be greatly appreciated.   Hugs

Welcome ERS4150

I hope others read your message. If possible, maybe you could re-post your message on a new thread? I am just afraid that it might get lost here.

You have been through so much and we are here to help support you. I am sure other more experienced members will chime in with some great advice.

Hugs

Jojo

 

todd121

ERS4150 said:

votrient

Hello,

My husband was diagnose last June, after finding the cancer in his ankle.  Actually, it has caused a stroke in April, but at the time, the neurologist said the stroke was a fluke.  When my husband was sent to radiology, I pressed that his MRI results be evaulated by a neuro onchologist?   Of course, it was confirmed that RCC has caused his stroke and he did have leisons in his brain.  The scans revealed that he has cancers in his lower left lobe of lung and left kidney and nodes.  Since then, he was placed on Sutent which did shrink some of his cancers, but follwing a two week cycle off, we decided to go check out Cancer Treatment Center in Tulsa, this past Feb.  We were told by onchologist the cough that was producing blood at thebtime was a normal side affect and that the open wound from his ankle incision was normal.  We said that the center could perform a COLD laser treatment that our current treatment couldn't provide.   During our trip,  the laser treatment started having immediate results,  plus the bloody cough wad treated with a bronchoscopy.   Apparently,  we the kidney cancer is known to create blockages in his passages,  so this is why he eas coughing up blood.  Now my husband has a pulmonary doctor, but we couldnt continue with CTCA due to cost of treatment, plus logistics.  It did open our eyes on difference of treatment.   Afterward, my husband was plaved on Affinator., taken off Sutent.  His ankle wound hasnt fully healed and we recently learned his adrenal glands tumors are growing.  Last week, we met with a new Onchologist who said, that the cancer hasnt so read and the adrenal glads are still growing.  He suugested looking into clinical trials at MD Anderson, but my husband is not certain, so I think that he should try VOTRIENT?  My husband was a fit 50 year old, but this diagnose has taken its toll on his mental.  He wemt from a relatively healthy 49 year old to this.  By the way, we have two sons,  ages 14 and 11.  Any advice would be greatly appreciated.   Hugs

Welcome

I hope you'll repost this on a new thread. Like Jojo said, it might get lost here.

Also, I hope you won't mind if I suggest you write all of this down on your profile so we can read your background later on when you post again? There should be a link at the top of your page where you can update your bio/profile and write down the story. It will save you answering the same questions over and over again when you post.

I'm very curious about your experience at Cancer Treatment Center in Tulsa. My mother lives in Tulsa and I travel there often. I see their ads on TV all the time. Unfortunately, because they are advertising alongside the ambulance chasers and some of the less desirable colleges on the afternoon TV, I was wondering if they are for real in terms of respectable, knowledgeable doctors. I'd love to hear what you thought of them. Still, a different/new thread would be a good idea for that too.

Best wishes,

Todd