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Cancer: Kidney Message Board
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Old 08-05-2008, 07:20 AM   #1
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Ridesthewind HB User
Unhappy Surprise! Kidney Cancer turned my brother to a dead man walking

My brother went in for a regular check up last week. It was found that he has a baseball sized mass on his right kidney, several in his liver and innumerable in his lungs. The doctor's have given us a grave prognosis about a 20% chance of survival in the next year. We will have the kidney removed ASAP but....quality of life issues enter my mind. With additional trreatment will this young 51 yo man spend his last months in great pain? Is there ANY hope? Does anyone know if IL-2 is of any benifit, I understand that traditional chemo does not respond as well with kidney cancer patients. Please someone, give us a little hope.

 
Old 08-05-2008, 08:06 AM   #2
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

Hi,

Boy, can I ever relate to what you're going through with your brother! I lost my Mom to pancreatic cancer just a little over a year ago (she only lived for 3 weeks after we found out about her cancer), and just as I was finally starting to heal emotionally from that trauma, one month ago I found out that my husband has stage IV kidney cancer. He has a tumor the size of a grapefruit on his left kidney, a smaller tumor on his right kidney, metastases to both adrenal glands, both lungs (over 40 different nodules in the lungs), AND the lymph nodes in the chest. We've been devastated, of course. I cried nearly nonstop for a week after we found out about this. You are not alone. You will find many people on these forums and others who are going through the same thing.

I don't know your brother's situation, but if he is in fairly good health otherwise then his chances are better. My husband is 64 years old. I know age comes into play a little bit here. Your brother is fairly young, and if he's not already experiencing a lot of symptoms then he might just surprise you. Don't throw in the towel just yet. I think a lot of it has to do with attitude. After the initial shock and devastation when you find out about the cancer, then you have to find a good oncologist and formulate a plan of attack and fight, fight, fight! Keeping a positive attitude really helps.

I can't offer you a lot of answers. My husband and I are in uncharted waters here, too. We don't know what tomorrow holds in store for us. What we are doing is taking one day at a time and thanking God for each good day He gives us. We're enjoying life as much as possible and appreciating those little things that formerly seemed to go unnoticed.

My hubby is currently inoperable due to the horrible spread of this cancer all over his body. I still can't figure out how someone can be so close to death and not even know it! Dave is on a treatment once a week, intravenously, with a drug called Torisel. And I have got to tell you, this Torisel has helped Dave tremendously. Prior to starting the Torisel, he was coughing nearly continuously due to the lung and lymph node mets. He couldn't sleep because of the coughing. He couldn't lie on his back or on his right side because he would just cough nonstop. About 2 days after starting the Torisel his cough completely went away! He looks and feels so much better now. He's due to have another CT scan in 3 weeks to see if the tumors are shrinking, but I can already tell you they are. How could they not be? This man is like a whole different person with this medicine. Now, our doctor has told us that there is usually a good initial response to Torisel, and the challenge is to keep it going long-term (the chances of that are not good, according to the stats).

I don't think your brother's situation is totally hopeless. I think the doctors can say whatever they want, but in the end it's still up to the Man upstairs. I honestly don't think a diagnosis of stage IV kidney cancer is an automatic death sentence. At least, I hope not, because we're in the same boat as you. I will be praying for you and your family. Sorry my answer wasn't more helpful. I'm new to this, too. There are others here on the forum who will be able to give better answers. Just know that you're not alone.

Nancy

 
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Old 08-05-2008, 08:22 AM   #3
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

Thank you so much, we will be seeing a doctor at the Seattle Cancer treatment center today to discuss options. I will print out your respnse and reply later with what the Oncologist (2nd one) says today. Blessings and prayer to your family!

 
Old 08-05-2008, 05:02 PM   #4
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

Don't throw in the towel. Sometimes when you take the primary tumor out (specifically kidney cancer) the others sometimes either stop growing or regress.

My husband died of kidney cancer 2 months ago. When he had his kidney removed 12 years ago, the first surgeon that we saw gave him 2 years.

So - statistics are statistics. Just do all you can, get as informed as you possibly can because there are many possibilities. I would also look into Insuline Potentiated Treatment IPT. I personally know of people that got cured from stage 4 cancers that were also as hard to deal with as kidney cancer.

Unfortunately it did not work for my husband, but one never knows.
Good luck.

Last edited by moderator2; 08-06-2008 at 10:17 AM. Reason: if you want to share a website, please have it pre-approved by the administrator, as per the posting policy

 
Old 08-06-2008, 12:17 AM   #5
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

My brother and I spent quite awhile at the Seattle Kidney Treatment center today. The information we received was 180 degrees from what we were initially told. As Nancy said earlier, Torisel was offered as an option. The doctor there was surprised that a biopsy was not done and ordered one to be completed in two days. The first Torisel treatment will be done on Friday. We went from a 20% or 6 months to 2/3 chance of survival.
We're in muddy water here. This past week has been an emotional challange. I have had to research and try to keep my brother together. All of the what ifs and his being alone. His 20 yo son is now begining to ask questions.

Weighing in on the options we now have: Pros and Cons. Taking the kidney and mass would severely weaken him initially and then chemo. Quality of life seems to be the larger factor than just survival for a year.

Eblgium: I am so sorry to hear about your husband's passing but very encouraged that he survived 12 years after the fact. ( removed ) I'd be very interested in learning as much as I can before we pass the time of choice. It seems to be individualized in so many cases. Doctors having so many varied opinions; most with only grave outcomes. We question ourselves about physician motives. Our first impression of a young Urologist was just that we were another number on his assembly line tables. The bedside mannor of a cocky jock. This is such a vunerable time in a person's life; so much coming at you all at one time and difficult to choose the option that is going to save a life.
Thank you both so much! My heart and prayers are with you.
Thankfully,
Laura

Last edited by moderator2; 08-06-2008 at 05:39 AM. Reason: please do not ask members to post against the rules

 
Old 08-06-2008, 05:50 AM   #6
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

Good Mornin All,

I would like to add... dont give up that easy. Kidney cancer treatments have come a long way just in the three years my father has had it. At first he was offered the IL2. He did not go with that due to the side effects and many trips to the doctors. He was offered Sutent .. which had recently been FDA approved. So here we are 22 months since he started the Sutent and now having to change our coarse of action. He has done very well with the Sutent compared to most I have chatted with or posts I have read. Thank God for that. He will start as soon as he gets some the drug called Nexavar.
It is simular to the Sutent with the side effects its just aministered differently.
Instead of the one pill a day for four weeks and then two weeks off. Its two pills in the morning and two pills in the evening. I hope he does as well with the side effects as he did with the Sutent. However the Sutent has now stopped working for him. I think his body has gotten use to it. We have been throught the same feelings as you and there are times the stress can get you. However theres no time to just give up and say I cant fight. As this is a fight that can be fought.

Do you know what cell type you brothers cancer is? There are three types and the most common is clear cell. This one is the easiest to treat. As for the others well you will have to look into as much info as you can. As another family memeber dealing with a parent and or brother in your case. Or like those that have husbands. It can be very hard to feel like you can do nothing. All we can do is be there and support and love our loved one and make the most of the time we have together. I pray for you and your brother and give you the strength to fight this battle as we are the warriors.

A Friend Wendy

Last edited by moderator2; 08-06-2008 at 08:18 AM. Reason: do not direct off board searches or direct members to websites - except as per the posting policy

 
Old 08-06-2008, 06:49 AM   #7
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Re: Surprise! Kidney Cancer turned my brother to a dead man walking

Laura,

12 years ago we were told that to biopsy would be to increase the risk of a bleed (the kidney is highly vascular) and it would be safer to take the kidney out with the tumor. As the doctor said "whatever it is, it should not be there, so let's take it out". He proved right. The surgery is hard, but I gave my husband Jin Shin Jyutsu (a gentle type of accupressure that is easy to apply in hospital settings. You can search it and it is easy to find someone) from the moment he was back in the room. He walked out of the hospital in 3 days with no complication and not too much pain (I atribute that to the Jin Shin Jyutsu because the doctors were puzzled). Three weeks later he cooked a dinner for 20 people (he was a chef).

I think - from all that I have been reading in the last year when my husband was sick - that there are other options besides even torisel. Read. Read. Read.

My husband also did alternative diets, all of them have a common denominator that is NO SUGAR WHATSOEVER. From the fruit family, only berries.

Look into high dose vitamin C infusions. There is some evidence that it could help metastatic kidney cancer. I believe it helped prolong my husbands life.
Good luck. If you need to ask any questions, I come and check the boards almost everyday.

Last edited by moderator2; 08-06-2008 at 07:10 AM. Reason: if you want to share a website, please have it pre-approved by the administrator, as per the posting policy

 
Old 08-06-2008, 10:12 AM   #8
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William Y HB User
Re: Surprise! Kidney Cancer turned my brother to a dead man walking

I have a 4.3 cm Kidney Mass found in May, 2004. There was 1/2 cm bigger in one year later and 1 cm bigger was measured in three years later, in May this year. No biopsy was made because of the risk of Kidney bleeding. No medicine was given without taking out of the Kidney first. I am still ok without symptom. Doctor said that I could not wait for the surgery to take out the Kidney and the Renal Cell would kill me since May, 2004.

Last edited by William Y; 08-06-2008 at 12:48 PM.

 
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