I'm New Here Just Want To "Talk" To Someone

Hi, I just stumbled onto this website moments ago. 

       My husband, Herb was diagnosed with Bilateral Renal Carcinoma in September of 2005.  He had no symptoms, but thanks to an emergency appendectomy the kidney tumors were found.  My husband had to get 25% of one kidney removed and the other kidney totally removed.  We thought we were through with all this until this past February a scan revealed the return of renal cancer in his lungs.  Thus, my husband had been on Sutent since the end of June.  The Sutent is working but the side effects are becoming troublesome: diarrhea, weight loss, metallic taste and loss of appetite.  My husband has lost about 40 pounds and can't seem to keep up with having his clothes tailored.  He is fatigued and seems to be cold all the time. We are grateful that he has been able to work for 98% of the time he is on treatement, but I know he is tired.  (We also have a 4 year old who, unfortunately, is used to hospitals and doctors, and the phrase: "Daddy, isn't feeling well today, honey...........")

         My husband just returned home from the hospital on Thursday, October 4th.  It appears that he now has Gout on top of everything else - he is also a Diabetic, with high blood pressure and high cholesterol. The majority of treatments for Gout is not compatible with my husband's kidney situation, so we have to be careful here as well.

         At any rate, my husband is mid way through Round 3 of treatment with the Sutent.  He'll have his two weeks off, and then he'll be ready for another round.  My husband doesn't say much about his condition, but admitted to me yesterday, that: "...I'm tired of all of this..........." He feels bad that his physical problems take its toll on me and our daughter.  We seem to always be waiting for "the other shoe to drop."  Whenever a new physical problem becomes apparent, we cannot ignore it and oftentimes ask ourselves, "what next?"

Are we the only ones who feel this way?

Hello Herb's wife, your not the only one that feels the way you do,  I think we all do. We also thought they "got it all" when my husband  Danny, had his nephrectomy. We felt lucky that through an on the job injury, his kidney mass was found. How disappointed, and shocked, we were, when we found out, that in fact the cancer had returned. This time it had metastasised to his pelvic bone. My husband was on a study that included nexavar, Xeloda and Gemzar and last Friday we found out the medication has not worked and the cancer is progressing. Now the Oncologist is putting my husband on Sutent. My insurance won't pay it in full so I'm trying to find help. All I can  say is I pray and hope the Sutent works, 

These message boards are great, I don't know what I would do without them. Sometimes we feel so alone and hopeless.

I hope your husband feels better and things smooth out. All I can say is keep writing, and reading on the boards. It really helps. Good Luck and G-d Bless 

On 10/8/2007 mutha wrote:

Hello Herb's wife, your not the only one that feels the way you do,  I think we all do. We also thought they "got it all" when my husband  Danny, had his nephrectomy. We felt lucky that through an on the job injury, his kidney mass was found. How disappointed, and shocked, we were, when we found out, that in fact the cancer had returned. This time it had metastasised to his pelvic bone. My husband was on a study that included nexavar, Xeloda and Gemzar and last Friday we found out the medication has not worked and the cancer is progressing. Now the Oncologist is putting my husband on Sutent. My insurance won't pay it in full so I'm trying to find help. All I can  say is I pray and hope the Sutent works, 

These message boards are great, I don't know what I would do without them. Sometimes we feel so alone and hopeless.

I hope your husband feels better and things smooth out. All I can say is keep writing, and reading on the boards. It really helps. Good Luck and G-d Bless 

Hi, there, thanks so much for answering my message. 

    Yes, it seems that kidney tumors present no "symptoms" so most of us are finding out "by accident" that our loved ones have cancer.  The Sutent is working for my husband (he had tumors in both lungs; with the exception of a few, all tumors have shrunk or disappeared.)  My husband should have his next scan in about two weeks or so but his oncologist just wants him to go to Round 4 of treatment with no scans.  I have a problem with this.  If the lung nodules have disappeared after Round 3, why put my husband through 4  more weeks of treatment (with its side effects, etc.)

    With regard to the Sutent:  Log onto: www.sutent.com.  There is a section for help for those whose insurance does not cover the full cost.  (Click on the left hand side of screen) I just found this site yesterday.  Please let me know if this works for you.

Moregate

On 10/10/2007 Bunker wrote:

Hello Moregate,

My name is Bunker---maybe you have read some of my earlier postings. I share some common ground with your husband. My RCC was discovered in 12/2004 entirely by accident---due to a routine physical for life insurance. I had no symptoms and I was in reasonably good shape. I had my left kidney removed in 12/2004 (Stage I) but by 5/2005 the RCC had metastasized to my liver and I had two more surgeries to my liver (now Stage IV). I went on Sutent in August 2005 before it was approved by the FDA. I participated in a trial by Pfizer. I had great response to Sutent and my tumors have all disappeared. I went through a total of 6 treatment cycles and then stopped taking Sutent altogether. I have been tumor free for approximately 19 months and off Sutent for 17 months. I did have some of the side effects that you mentioned and we learned some "tricks" along the way. For example: my doctor was able to prescribe a medication for the diarrhea and we visited some buffets to determnie what foods were appealing and then my wife fixed those at home. I have also had trouble with gout in the past but have not had a problem for a few years. I do take a pill daily to help prevent the gout and it has not casued any issues with my remaining kidney. The medication is  called Allopurinol (300mg/day). I need to run for now but if you have addtional questions please don't hestitate to ask.

Bunker.  

Hi, Bunker - thanks for sharing the info with me.  My husband, Herb and I went to see his oncologist yesterday and he asked the doctor to come off the Sutent immediately.  Between my husband's recent hospitalization and the side effects of the medication, my husband feels just worn out.  Thankfully we were told last month that there are only two very tiny nodules still left in his lungs.  My husband will have some scans done in a week or so and we will see where we go from here.  At present, my husband is weak and cold and just feels miserable. He has no energy and seems depressed.  Next time around we'll do as you suggest and take some meds to counter act the diarrhea and we'll try different foods too.

Hope you're doing okay.

Moregate

Hi, I'm not sure if you are still checking for responses to your note but my heart goes out to you.  My husband was first diagnosed in 2001.  They found what we thought was a bone cyst in his left forearm 5 hours later I learned he had clear cell renal cell and did not even understand what the doctor was trying to tell me.  Within 3 weeks they removed his right kidney and a grapefruit sized tumor.  The only drugs available were so toxic that we decided to wait.  In 2003, they found 5 abnormalities in his pancreas and tried to biopsy them, almost killed him and it was undiagnostic, they were inoperable anyway so we decided to wait again.  On 9/11 they found 2 lethal brain tumors in his brain stem, doctor recommended whole brain radiaition.  We did not have peace about doing this but were told he had 3 weeks to live if we did not.  A wonderful friend of mine who I met last year is an oncology nurse and is in my ladies prayer group.  She got us in to see her radiation oncologist who recommended CyberKnife.  This new miracle technology can be used on tumors anywhere in the body except the bowel and tongue.  On 9/25 and 10/2 my husband was treated in outpatient procedures using the Cyberknife, it was painless and we believe that this has saved his life.  We will find out in 2 to 3 months if the tumors are dead as this changes the DNA of the tumor and causes them to die.  We feel it worked as my husbands symptoms are gone.  He is feeling fatigue but most of his side effects are coming from the strong steroid, dexamethsone that they prescribed.  Not sure what I felt led to tell you all of this but possibly the CyberKnife could be used to help your husband.  I know that prayer does help and we definitely feel that God's hand was involved in leading us to a doctor who uses it here in the Fort Worth, TX area.

In God's Hands - Susan

On 10/13/2007 Subob wrote:

Hi, I'm not sure if you are still checking for responses to your note but my heart goes out to you.  My husband was first diagnosed in 2001.  They found what we thought was a bone cyst in his left forearm 5 hours later I learned he had clear cell renal cell and did not even understand what the doctor was trying to tell me.  Within 3 weeks they removed his right kidney and a grapefruit sized tumor.  The only drugs available were so toxic that we decided to wait.  In 2003, they found 5 abnormalities in his pancreas and tried to biopsy them, almost killed him and it was undiagnostic, they were inoperable anyway so we decided to wait again.  On 9/11 they found 2 lethal brain tumors in his brain stem, doctor recommended whole brain radiaition.  We did not have peace about doing this but were told he had 3 weeks to live if we did not.  A wonderful friend of mine who I met last year is an oncology nurse and is in my ladies prayer group.  She got us in to see her radiation oncologist who recommended CyberKnife.  This new miracle technology can be used on tumors anywhere in the body except the bowel and tongue.  On 9/25 and 10/2 my husband was treated in outpatient procedures using the Cyberknife, it was painless and we believe that this has saved his life.  We will find out in 2 to 3 months if the tumors are dead as this changes the DNA of the tumor and causes them to die.  We feel it worked as my husbands symptoms are gone.  He is feeling fatigue but most of his side effects are coming from the strong steroid, dexamethsone that they prescribed.  Not sure what I felt led to tell you all of this but possibly the CyberKnife could be used to help your husband.  I know that prayer does help and we definitely feel that God's hand was involved in leading us to a doctor who uses it here in the Fort Worth, TX area.

In God's Hands - Susan

Hi, Subob - you've really been "through the fire too."  God Bless you for all your husband is going through.  I've never heard of CyberKnife.  Lord knows, I hope my husband doesn't have to undergo surgery again, but I'll keep this new technology in mind.  Our 4 year old daughter went to a birthday party today.  At the party there was a five year old whose mother has cancer, also.  This gave us an unexpected couple of hours to talk to someone who knows what we're going through.  One of the things we talked about is that my husband had absolutely no symptoms when he had the kidney cancer and even now with the lung tumors.  It's the treatment that has caused all the pain and unpleasantness. 

We have an excellent church community and they have been wonderful to us.  You should have seen us two years ago when we moved right after my husband was diagnosed and the week before his first kidney surgery.  It was the second weekend in September (our condo had been sold in early August while we were out of the country on vacation) plus, I'm a school principal and at that time our daughter was only 2 years old. They packed our house (my husband was recovering from the appendectomy that revealed the kidney cancer) helped to move us (there was the Budget Rental Truck) and eight cars, plus they UNPACKED us in our new house and brought food.  I literally looked at everybody (just about our whole choir was with us) and cried.  Little did I know that it was going to get harder from then on. They are the community that we can lean on - even better than our families. God always puts the right people in our lives at the right time.

Keep the faith!!

Moregate