HOW WILL DEATH OCCUR?

I have completed 4 rounds of Sutent, 50mg. 4 weeks on & 2 weeks off cycle.  My oncologist did not expect me to stay at that dose past 2 weeks into my first round because I'm petite & look where I am.  Side effects are tolerable.  My tumour is outside of the lung & it starting shrinking after 2 rounds of Sutent by a thired.   I'm still working, playing soccer, doing my 8 km. walks, etc.  Sutent has not stopped me from doing anything.  Don't give up.  Take care & best of luck.

Joanne

On 6/25/2009 Joanne I. wrote:

I have completed 4 rounds of Sutent, 50mg. 4 weeks on & 2 weeks off cycle.  My oncologist did not expect me to stay at that dose past 2 weeks into my first round because I'm petite & look where I am.  Side effects are tolerable.  My tumour is outside of the lung & it starting shrinking after 2 rounds of Sutent by a thired.   I'm still working, playing soccer, doing my 8 km. walks, etc.  Sutent has not stopped me from doing anything.  Don't give up.  Take care & best of luck.

Joanne

Joanne, thanks for the encouraging message.  If I calculate that right, you are some 6 months since diagnosis and are obviously going to beat the 6 months the oncologist told me I could expect to live untreated. Looks like you can expect to live for a long time with a high quality of life.

This insurance thing is complicated.  I have Medicare with the Plan D pharmacy supplement.  My co-pay for Sutent is $4,805.76 per 28 pills. Just one month will put me in the 'donut hole' where I don't have any coverage, but the second month will take me out of the donut hole where there is no coverage and put me into the next tier of coverage...it's all so confusing.  As I said in my earlier posts, I refuse to leave my devoted wife with a bunch of dept to buy cancer drugs that may or may not work for me, so unless I can get some help from Pfizer, I will probably just turn down treatment and play the hand out.  C'est la vie.

Hi Shotgun!

I'm so glad to hear that you have applied for assistance from the drug manufacturer.  YOU CANNOT GIVE UP!!  I feel very hopeful that they will supply you with this medication.  I've read alot about the Sutent.  Even though it has some nasty "possible" side effects, it doesn't mean you will have them.  Our oncologist told us that if the side effects got too bad, he'd reduce the dosage.  I am praying that my precious husband will be able to tolerate this drug, as it has helped many people.  I'm sure everyone dreads dealing with any side effects....but if reducing the dosage doesn't help them enough, there are other drugs available that y'all can try.

 My husband and I have been together 43 years......and he is my life, as I'm sure you mean the same to your wife.   Hang in there, and give your sweet wife a huge HUG!

My thoughts and prayers are with you!

Ingrid

On 6/26/2009 msgrace wrote:

Hi Shotgun!

I'm so glad to hear that you have applied for assistance from the drug manufacturer.  YOU CANNOT GIVE UP!!  I feel very hopeful that they will supply you with this medication.  I've read alot about the Sutent.  Even though it has some nasty "possible" side effects, it doesn't mean you will have them.  Our oncologist told us that if the side effects got too bad, he'd reduce the dosage.  I am praying that my precious husband will be able to tolerate this drug, as it has helped many people.  I'm sure everyone dreads dealing with any side effects....but if reducing the dosage doesn't help them enough, there are other drugs available that y'all can try.

 My husband and I have been together 43 years......and he is my life, as I'm sure you mean the same to your wife.   Hang in there, and give your sweet wife a huge HUG!

My thoughts and prayers are with you!

Ingrid

 

 

Hi Ingrid.  Got a little bit of an update.  The financial counselor at the cancer clinic I go to is the one who applied for me to Pfizer for a break in the price of the Sutent.  I haven't heard back from her, but today I got a letter from Humana who my Medicare Plan D pharmacy plan is through saying I've been approved for Nexavar 200 mg 2 per day.  Since I've never heard of that and didn't apply personally for the approval, the doctor's office must have done that and is thinking of Nexavar instead of Sutent.  I called Humana and the lady looked me up and cheerfully told me yes they have approved it and my co-pay will be $457 per month. I explained I live on Social Security and can't afford that either.  So then she said if my doctor will call this special phone number and ask they make 'an exception to the tiers' I can get it for $67 per month.  Now, I can afford that.  So I called the doctor's office to try to get that going, but it was Friday afternoon at 4 pm and no one was to be found.  Grrrrr.  That is the kind of stuff that drives me crazy. When I had the needle biopsy done confirming it was indeed RCC, the doctor called to tell me on Friday afternoon at 5:17 pm just after everyone was gone for the weekend, so I then lost 2 days of nothing getting done.  That is the way this whole thing has gone.....lose a day here, lose a day there and first thing you know, another week has been lost.  The return of my cancer was confirmed on June 12th and here it is 2 weeks... a half a month later, and still nothing is being done to stop the spread of the cancer.  Now that they have gotten the price down to where I can afford it, I'm anxious to get started but have to wait another weekend of inactivity.  On the one hand I'm thankful Humana cut the price down to $67, and on the other hand mad to know they could have done that several days ago and didn't.  It's like they are playing games with people's lives.

Know anything about this Nexavar drug?

I live in Canada and as you know the medical system is based on socialized medicine with it very good and bad issues; but nevertheless, over all very good system.

Regarding you medications… first you yourself can take some initiative and call the drug companies yourself and tell them your story. Don’t wait for someone to do it for you . As a rule, they, the workers, will not go out of their way. They finish work at 4:30 PM and it will wait until the next day. In many cases the drug companies   are sympathetic  to people problems due to the bad reputation they have had  in the last few years regarding their earnings. In addition, you should Googol Clinical trials for RCC and see if there is a centre near you, you can join. When on trials all medications are free; and there is always a risk when on trial for yet not approved drugs.  

I am giving you a Canadian website that lists all the new meds and phone numbers to contact. Please try and don’t give up.  http://www.kidneycancercanada.org/main.php?p=332&lan=1

I hope it help you.

Cleo

Hi Shotgun!

What wonderful news about the reduction in price of that drug.  No, I'm afraid I know nothing about it.  However, I've gotten very active on the Daily Strength on-line support group, under RCC.  Many of those wonderful people have been dealing with this disease for a long time, and have used several of the different drugs.  I would encourage you to go there asap, as these people are so helpful!  When you enter a subject there, be certain to see something like "PLEASE HELP NOW!"  Memos are sent to all members when someone posts something new, and that would definitely get attention immediately.

God bless you and know that I am your friend.

Ms Grace 

On 6/27/2009 msgrace wrote:

Hi Shotgun!

What wonderful news about the reduction in price of that drug.  No, I'm afraid I know nothing about it.  However, I've gotten very active on the Daily Strength on-line support group, under RCC.  Many of those wonderful people have been dealing with this disease for a long time, and have used several of the different drugs.  I would encourage you to go there asap, as these people are so helpful!  When you enter a subject there, be certain to see something like "PLEASE HELP NOW!"  Memos are sent to all members when someone posts something new, and that would definitely get attention immediately.

God bless you and know that I am your friend.

Ms Grace 

 

Thank you Ms Grace. I presume "daily strength" is somwwhere on this blog, so I'll got look for it.,

 Best regards,

Shotgun

On 6/25/2009 Shotgun wrote:

I have been diagnosed with metastasized renal cell carcinoma manifesting itself in my lungs.  My oncologist estimates I will die in about 6 months.

How does death occur?

How will I know when my time is near? 

 

My upper arm broke unexpectly 42 months ago.  I was 59 at the time.  It was caused by a metastized tumor from kidney cancer.  My cancer had also metastized to my spine and ribs as well as both lungs.  I was told 10 months.  Yesterday my oncologist said I will be around for several more years.  My cancer is not in remission, but is well controlled.  Today I was splitting firewood for next winter.  My quality of life today is similar to what it was before the diagosis except my arm has limitations.

I had surgery, radiation and drugs.  Nexavar worked for about 1 year and Sutent is still working after 26 months.  I had great insurance so can not offer much guidance in that regard.  There is financial help available from various sources.

I remember how I felt after the diagnosis.  My wife would not let me give up.  It has been an up and down journey, but it has been well worth the effort.  The first 2 months were the worst due to all the uncertainity.  Please keep fighting.

Good Evening Shotgun;

I trust you won't mind my comments. I usually write on MM but logged on and saw your post.

I refuse to leave my devoted wife with a bunch of debt. I will probably just turn down treatment and play the hand out.

Very commendable! How's SHE feel about this? How about the kids?

C'est la vie.

It's been proven that timid patients usually fair far worse than aggressive ones.

Me? I'm like Waylon says: "Angry, onery and mean!" When the Grim Reaper comes calling for me He better not come alone! I want my family to remember that Ol' K.C. fought to the bitter end.

While I understand your feelings I don't agree with them one bit. I share the previous patients' opinion. But accept that cancer affects us all differently.

I wish you well in your decision.

Take care,

Kevin