checking in
Hey everyone,
Steve had scans the other day. They put his IV in down in radiation and was preparing to give the contrast that allows them to see the tumors. When he came out to me I saw it and said " wow is your creatine better? He kinda sat down with a dejected look on his face and told me it was the highest it has ever been 4.5 !!!
When we saw his doctor he was puzzled about why it has slowly inched upward. He suggested that his growth has been millimeters for so long that it has grown to a size that bothers the function of the kidney. He said that his tumors appeared stable, with what he could see. When we look at the tumors with our doctor they appear fuzzy and not clear. He suggested that Steve see his kidney specialist. I can't spell nephrogist !!!! Crap!! At any rate they checked it a week later and it had come down to 3.7. A step in the right direction!
So the two doctors consulted and think that Sutent is the culprit.. I know that Steve will not want to come off it as he has been on it so long and kept him stable.
The kidney doctor is talking about him sending him to the dialysis clinic to see how things are done and the different types of dialysis. He first told me" I had rather die". He will adjust, he has to think about it. Our oldest daughter said Daddy it will take four hours and you will 20 hours to do what you want. Not saying that it is coming soon but just getting him adjusted to the thought. Our youngest daughter told him that he could stay where he is and be fine but if it continues to climb it IS a possibility The fact that he has nothing else wrong with him is a plus. His body will be able to withstand it better.
Am I scared? You better believe it. A life style change is what our daughter said. Please God, give us the strength to persevere.
Need your prayers,
Wanda
PS all of you who have kidney cancer listen to our specialist advice:
No dark drinks
No caffeine
very small portions of protein (hard on the kidney)
no salt
watch your potassium levels
keep your blood pressure in check (very important)
and your blood sugar in control
(the last two is the most common cause of kidney failure)
Steve had scans the other day. They put his IV in down in radiation and was preparing to give the contrast that allows them to see the tumors. When he came out to me I saw it and said " wow is your creatine better? He kinda sat down with a dejected look on his face and told me it was the highest it has ever been 4.5 !!!
When we saw his doctor he was puzzled about why it has slowly inched upward. He suggested that his growth has been millimeters for so long that it has grown to a size that bothers the function of the kidney. He said that his tumors appeared stable, with what he could see. When we look at the tumors with our doctor they appear fuzzy and not clear. He suggested that Steve see his kidney specialist. I can't spell nephrogist !!!! Crap!! At any rate they checked it a week later and it had come down to 3.7. A step in the right direction!
So the two doctors consulted and think that Sutent is the culprit.. I know that Steve will not want to come off it as he has been on it so long and kept him stable.
The kidney doctor is talking about him sending him to the dialysis clinic to see how things are done and the different types of dialysis. He first told me" I had rather die". He will adjust, he has to think about it. Our oldest daughter said Daddy it will take four hours and you will 20 hours to do what you want. Not saying that it is coming soon but just getting him adjusted to the thought. Our youngest daughter told him that he could stay where he is and be fine but if it continues to climb it IS a possibility The fact that he has nothing else wrong with him is a plus. His body will be able to withstand it better.
Am I scared? You better believe it. A life style change is what our daughter said. Please God, give us the strength to persevere.
Need your prayers,
Wanda
PS all of you who have kidney cancer listen to our specialist advice:
No dark drinks
No caffeine
very small portions of protein (hard on the kidney)
no salt
watch your potassium levels
keep your blood pressure in check (very important)
and your blood sugar in control
(the last two is the most common cause of kidney failure)
Replies
Hi Hon!
Our nephrologist encouraged us to visit their dialysis center too. If Ray was to try another chemo drug, she\'s sure he\'d have to go on dialysis. Of course, like Steve, Ray said, \"NO!\" That\'s the main reason he decided several years ago that he will never take another chemo. I know that many people live relatively normal lives with dialysis. It was hard for me to accept that Ray won\'t consider another treatment because of this probability. He has to have control over some things. Bless his heart. I will be praying that Steve will never have to face that. He\'s really done well on the Sutent, and is a walking miracle.
Hang in there, dear friend. We\'re all on this roller coaster together.
I love you,
Ingrid
Roller coaster is right. As I was reading this, the phone rang. My mother in law has fought Berkits lymphoma for about a year and it appears as if she has beat it. Her sister however, was diagnosed with lung cancer 2 weeks ago. She just died. Had a fever 2 days ago. Some type of bug attacked her. One old saying comes to mind. \"When you\'re down... they kick you\".
Hi Wanda,
Tell Ray that my son had to go on dialysis for several months while awaiting his second kidney transplant. It is not that bad and he can spend the time reading, listening to music, watching tv - it goes quickly. Hoping that it will not come to that and he is able to stay on the Sutent which has done right by him so far. Good luck with it all, and hang in there.
XO Gloria
Wanda - you have my prayers, and, I know that you both have every bit of the strength that you need for this new challenge. Horrible that you have to face it, but amazing that Sutent is still, after all this time, doing the job. Praying that the creatinine continues to inch down, and I know you can get through this new hurdle. Oh it\'s stressful though, and tiring to have to face it. Sending love and blessings
Meriel
Dear Wanda, I\'m sorry that you and Steve have to have such worry. My dad was much older than Steve when his kidneys failed and he had to have dialysis. At first it seemed like a burden, but then he accepted it as part of his life routine. He was able to travel and everything, just needed to make arrangements with hospitals or clinics in the area he was traveling to so he wouldn\'t miss his treatment. They had very comfortable lounging chairs and my dad usually took naps during the dialysis. It allowed him to live, and that meant everything to us. I hope Steve won\'t need dialysis, but, if he does, he can enjoy a long life with it\'s help. I know this is difficult for him...watching the control of his health slip little by little. My thoughts and prayers are with you both. Love, Linda
I hope he gets better. I have said before, I never understood that doctor mumbo-jumbo.
We can talk philosophy and psychology all day but medicine...Im lost! It is gibberish to me. Good/Bad...I get. I understand right direction...
I pray for you and think of you everyday.
ILU
Christi
I don\'t know how I missed this post.
My heart is with you, Steve, and all the family....That\'s scary news, but we all know that God is in control. Steve is blessed to have his family around him who all love him so much. I truly believe that can keep a person going.
Gives them a reason to live.
You\'re all in my thoughts and prayers...Love and hugs...Rachel
Thank you all my sweet friends!