What Does This All Mean

Two weeks ago my dad was traveling the world on business as usual.  Last week in Japan he started urinating blood and blood clots.  He got back to California and called me.  I thought he had a kidney infection.  The next morning he was admitted to the hospital.  After three days he was sent home and we were told to go find a clinical trail somewhere.  We found one at UCLA and we meet on Monday.  My question is what does all this mean?  The doctor said he has stage IV RCC.  He said he has a tumor on his lower right kidney, left kidney?, lung, somewhere in the chest area(near the esoughgus), liver, and behind the kidney near his back. I asked about his brain because the CAT scan didn't check that.  He said they wouldn't check that or do a PET scan at this point because it was too far gone and it wouldn't matter at this point. He hasn't lost weight, he is anemic, he has swelling and a little bit of back pain.  It just seems so strange.  They did say after an MRA that the "cysts" were not as big as originally thought. They sent us home and we haven't heard from them since.

 

On 11/24/2007 jensdad wrote:

Two weeks ago my dad was traveling the world on business as usual.  Last week in Japan he started urinating blood and blood clots.  He got back to California and called me.  I thought he had a kidney infection.  The next morning he was admitted to the hospital.  After three days he was sent home and we were told to go find a clinical trail somewhere.  We found one at UCLA and we meet on Monday.  My question is what does all this mean?  The doctor said he has stage IV RCC.  He said he has a tumor on his lower right kidney, left kidney?, lung, somewhere in the chest area(near the esoughgus), liver, and behind the kidney near his back. I asked about his brain because the CAT scan didn't check that.  He said they wouldn't check that or do a PET scan at this point because it was too far gone and it wouldn't matter at this point. He hasn't lost weight, he is anemic, he has swelling and a little bit of back pain.  It just seems so strange.  They did say after an MRA that the "cysts" were not as big as originally thought. They sent us home and we haven't heard from them since.

 

Find a reputable RCC specialists as soon as possible. There are many avenues of treatment

Hi!

I am a 58 years young female that has just completed my 7th session of sutent.

I was diagnosed with MRCC March of 2006. My left kidney was removed at that time.

I had several tumors in my lungs and one under my stomach. Doctors were not sure which treatment I needed to start with. I had lost many pounds before the kidney cancer was found. Started the sutent (50) in June, 2006. Insurance company did not want to pay as they outlined in their policy. I would have to pay $1800 per 28 pills. Things were not looking to good at that time, who has that kind of money. I had a lot of people working and praying about this problem. Finally the nurse that the insurance company had assigned to me talked to enough people that the insurance company came down to $150 per 28 pills but would have to order thru their mail-order pharmacy. Hey no problem,

Started sutent. Could not work due to the side effects of the sutent. Was able to get

Social Security disability. Side effects were taste all messed up everything tasted like it had a ton of salt on it or had no taste at all. Tongue was very sore hated to brush my teeth. Fatigue was terrible. Then the diarrhea kicked in. Got weaker and weaker. Doctor changed the timing of the pills. I would take a pill for two days and skip third day. This was much better, diarrhea not so bad could live with it. The longer I took the sutent the more side effects. Including hands tingling, rashes, heart burn, elevated blood pressure, very sensitive to the sun, water retention and others. Took Prilosec for the heart burn. I took my sutent pill before bedtime. This time seem to work better than morning. Would add DanActive to help with the diarrhea. And just endured the rest. During this time cat scan show reduction of tumors.

The last cycle was the worst. Started having horrible headaches, the kind where you just go to bed and cover up your head. Doctor took me off the sutent for 5 days, Headaches went away, and started back on the sutent headaches came back. Doctor decide that my body needed a rest for about a month. Stop the sutent within a few days felt good. Then great.

Call my grandchildren and told them to come to Grannys I would be ok for a month. Had a cat scan about 1/2 thru this wonderful month but would not ask for results until month was up.

I had a great time with the grandkids, husband and kids. Went to the doctor when the month was over for the results of the cat scan and to decide if to continue the sutent.

NO CANCER FOUND ANYWHERE!

The cat scan could not find any cancer. I am off the sutent and will do for checkups every six months.

I hope maybe this will help someone that is trying to deal with this type of cancer. Just

don't give up. I have become closer to my family and God during this ordeal. Don't block the people that you love out of your life at this time. Things are easier to endure if you know that you have their love and support. I truly believe that God has further plans for me has he has allowed the cancer to be cured. I did not find this web site until a few months ago wish I could have found sooner. It sure does have lots of info. When I first searched for sutent on the web there was very little out there.

Dont' give up find a doctor knows about kidney cancer.

God Bless each survivor and caregiver.

Thank you so much for your response! I got goosebumps reading it!  I will print it out for my dad to read.  I hope you continue to do great!!  Thank you again!!!!!

Hi Jen,

I really don't want to burst your bubble, but we need to be truthful and realistic here. Unfortunately Drudell's story didn't seem to add up to me. I did a search on the user name and found the following post. Please note that it was written over 3 months ago and contains most of the same details but different start and end dates.

I was also diagnosed in March and am in the last week of Sutent cycle 6. I had a short delay in starting Sutent because I had some radiation first.

Please get your dad to a RCC specialist ASAP to have his case reviewed.

 Date: 08/09/2007

Thank you Recnac!  Wow that is strange. Fortunately I have done a lot of research and realize what we're up against. We did meet today with the RCC specialists at UCLA.  We have to do further testing to know more. I am curious how the Sutent is working for you and your background with this.  If you don't want to share, I understand.  It is funny how the first doctor told us there was nothing that could be done except for some possible clinical trails and the doctors today seemed optimistic without saying anything.  My family does realize the reality from research, the tests we have, his age(68), and the fact that they haven't even looked at his brain or bones yet.  I appreciate real advice and info.  We can handle anything we just would like any true stories.  It helps us to prepare.

Thank you!!

Jen 

 

 

On 11/25/2007 Drudell wrote:

Hi!

I am a 58 years young female that has just completed my 7th session of sutent.

I was diagnosed with MRCC March of 2006. My left kidney was removed at that time.

I had several tumors in my lungs and one under my stomach. Doctors were not sure which treatment I needed to start with. I had lost many pounds before the kidney cancer was found. Started the sutent (50) in June, 2006. Insurance company did not want to pay as they outlined in their policy. I would have to pay $1800 per 28 pills. Things were not looking to good at that time, who has that kind of money. I had a lot of people working and praying about this problem. Finally the nurse that the insurance company had assigned to me talked to enough people that the insurance company came down to $150 per 28 pills but would have to order thru their mail-order pharmacy. Hey no problem,

Started sutent. Could not work due to the side effects of the sutent. Was able to get

Social Security disability. Side effects were taste all messed up everything tasted like it had a ton of salt on it or had no taste at all. Tongue was very sore hated to brush my teeth. Fatigue was terrible. Then the diarrhea kicked in. Got weaker and weaker. Doctor changed the timing of the pills. I would take a pill for two days and skip third day. This was much better, diarrhea not so bad could live with it. The longer I took the sutent the more side effects. Including hands tingling, rashes, heart burn, elevated blood pressure, very sensitive to the sun, water retention and others. Took Prilosec for the heart burn. I took my sutent pill before bedtime. This time seem to work better than morning. Would add DanActive to help with the diarrhea. And just endured the rest. During this time cat scan show reduction of tumors.

The last cycle was the worst. Started having horrible headaches, the kind where you just go to bed and cover up your head. Doctor took me off the sutent for 5 days, Headaches went away, and started back on the sutent headaches came back. Doctor decide that my body needed a rest for about a month. Stop the sutent within a few days felt good. Then great.

Call my grandchildren and told them to come to Grannys I would be ok for a month. Had a cat scan about 1/2 thru this wonderful month but would not ask for results until month was up.

I had a great time with the grandkids, husband and kids. Went to the doctor when the month was over for the results of the cat scan and to decide if to continue the sutent.

NO CANCER FOUND ANYWHERE!

The cat scan could not find any cancer. I am off the sutent and will do for checkups every six months.

I hope maybe this will help someone that is trying to deal with this type of cancer. Just

don't give up. I have become closer to my family and God during this ordeal. Don't block the people that you love out of your life at this time. Things are easier to endure if you know that you have their love and support. I truly believe that God has further plans for me has he has allowed the cancer to be cured. I did not find this web site until a few months ago wish I could have found sooner. It sure does have lots of info. When I first searched for sutent on the web there was very little out there.

Dont' give up find a doctor knows about kidney cancer.

God Bless each survivor and caregiver.

My husband also has kidney cancer, 3 years ago had his rigth kidney remove, after a year went to his lung,had some of it remove, then in Aug.07 they found it back to where it first started, now he is on Nexavar.So far so good THANKS TO GOD!! he does have good Dr.How can I be a good caregiver for my husband, who he 50.I love my husband so much.He does not like getting on the computer to do research, but I do, cause I want to know about these as much as possible.We also have grandkids. It scares me to see live without my MICK. My prayer with you and your family .

                                            Rally 53

 

On 11/27/2007 jensdad wrote:

Thank you Recnac!  Wow that is strange. Fortunately I have done a lot of research and realize what we're up against. We did meet today with the RCC specialists at UCLA.  We have to do further testing to know more. I am curious how the Sutent is working for you and your background with this.  If you don't want to share, I understand.  It is funny how the first doctor told us there was nothing that could be done except for some possible clinical trails and the doctors today seemed optimistic without saying anything.  My family does realize the reality from research, the tests we have, his age(68), and the fact that they haven't even looked at his brain or bones yet.  I appreciate real advice and info.  We can handle anything we just would like any true stories.  It helps us to prepare.

Thank you!!

Jen 

 

 

I am sorry that you do not believe  my experience with MRCC.  Maybe I did not put the dates correctly. The message I sent I had wrote most it when I had gone off the Sutent and did not think of the dates being confusing.  But I did complete 7 cycles of Sutent and I am cancer free at this time.  

 

 

 

I've very sorry to have questioned your story. In my own "Sutent brain" state, I mis-read the year you wer diagnosed. I was thinking we just left 2006 and there wasn't enough time to have had surgery and then gotten in that many rounds of Sutent. I was wrong and hope you continue to be cancer free forever. It gives the rest of hope for a cure. The other part that threw me is that the doctor would stop the Sutent completely that quickly and then not do a scan for 6 months. Mt doctor would keep me on for a few more cycles and scan every 3 months. I guess they're all different. My apologies for doubting your story!

The reason we stop the sutent was because of the headaches I was having.  They were terrible the kind were you want no sound,no light and no movement.  When I would stop the Sutent the headaches  would go away.  I believe that it was God's way of telling me the sutent need to be stopped. 

I pray that you will also be healed of the cancer.

 

God Bless

D