Bunker's Recent Scan Results

Hello all,

Hard to believe that it's already been 5 months since my last scan. My wife (AKA Superstar Caregiver) and I met with my doctor this week and still no signs of the cancer. This means that it has been 33 months since any tumors and 31 months since I stopped taking Sutent all togther.

Bunker 

On 11/14/2008 Bunker wrote:

Hello all,

Hard to believe that it's already been 5 months since my last scan. My wife (AKA Superstar Caregiver) and I met with my doctor this week and still no signs of the cancer. This means that it has been 33 months since any tumors and 31 months since I stopped taking Sutent all togther.

Bunker 

 

Hi Bunker,

That is really great to hear and certainly gives the rest of us a reason to smile.  Since I am new to this site and don't know your history I am curious.  Could you please share for us newbies???????????

My husband was diagnosed with stage 4 RCC in June and has since had his left kidney removed and some resectioning of the small intestine for metatastic lesions that were bleeding and could cause blockagaes.  He has lesions in the messentary region and two in his left lung.  All were relatively small in mid-September when he had his pre-sutent scan.  We are due for another scan on Nov. 25th.  He had severe side effects on his first round of sutent and the oncologist stopped it after 21 days, gave him a 21 day rest, and now he is back on at 37.5 rather than his original 50.  His side effects are considerably less.   We are also dealing with the information that it clear cell with 70% sarcomatoid features which we understand to be more agressive.

I guess we would like to know about your case, what stage you were at, whether you had surgery, and how long (and what dose) you were on sutent.

Thanks.

On 11/14/2008 Bunker wrote:

Hello all,

Hard to believe that it's already been 5 months since my last scan. My wife (AKA Superstar Caregiver) and I met with my doctor this week and still no signs of the cancer. This means that it has been 33 months since any tumors and 31 months since I stopped taking Sutent all togther.

Bunker 

 

Hi Bunker,

 Your positive post was exactly what I needed to see this morning.  November 2007 my husband had his right kidney together with a softball sized tumor removed.  HIs scans have been clear until the one last Thursday.  The doc had requested an appointment today (monday) as there is something on the scan.  I have been very brave all weekend and know that there is no need to get upset until I have all the info.  But, it felt good to read your post this morning.  Thank you!!!

Singjan

Hello Jem-em,

I'm sorry to read about your husband's journey with RCC---we share some common background. I'm attaching a brief history that I've posted before about my own journey and I hope this is helpful and answers your questions. If not, please don't hesitate to ask additional questions. Here goes: 

I was first diagnosed with RCC on 12/6/04. I was 47 years old, had never smoked and in reasonably good shape. This surprise came totally by accident during a routine physical for life insurance. My urine test showed high levels of protein. Needless to say the insurance company turned me down and I was ticked but this was the luckiest day of my life. My wife and I have been lucky many times during this journey. The first plan of attack was to have my left kidney removed. Like many RCC patients, we were told that the tumor was totally encapsulated in the kidney and since I was diagnosed as Stage I RCC, no additional treatments were planned. I was to be scanned every 6 months.  Five months later I was at a routine visit with my general doctor due to minor swelling in my ankles and she recommended another CT scan. Then came surprise #2---the RCC had metastasized to my liver. Once again we were lucky. More surgery on my liver and I was now considered Stage IV. Three months after liver surgery the tumors appeared once again in the surgical area of the liver. At this point it was time to look for another strategy. While surgery had been effective in removing the tumor it was defensive at best. I wanted something that would treat my whole body given my opinion that if blood flowed into a tumor to provide nourishment why that same flow of blood couldn’t carry the cancer cells elsewhere. I am not a doctor but this seemed logical to me and I wanted to be more pro-active in my treatment. Luck once again fell upon us by finding Dr. Dudek (RCC specialist) at the University of Minnesota and more importantly he had a trial going for a yet to be approved new drug called Sutent. We studied what we could find and asked a lot of questions before determining that this was just what we had been looking for---something that would treat the whole body. We first had to qualify for the trial in the eyes of Pfizer. We went on a campaign to prove our "worthiness" and used a series of uniquely designed T-shirts to make our case. It must have worked because we were allowed into the trial (again that luck thing) and started Sutent in late August 2005---at 50mg/day. Because of the trial requirements I was able to have a CT scan after each cycle because Pfizer wanted the feedback. My doctor felt strongly about using a PET scan instead and Pfizer approved a PET/CT combination (I'll return to the significance of a PET scan later). After my first cycle we saw a 34% reduction in tumor size---we were very excited. I enjoyed my first 14 days off but was very anxious to return to Sutent. After my second treatment cycle (at 50 mg/day) we saw another reduction in tumor size but more importantly there was no longer any metabolic activity in the tumors---meaning that they were dead. It was the PET scan that told my doctor that the tumors were dead even though the mass still showed in the CT scan. This is the significance of a PET scan. We continued to take Sutent via the Pfizer trial for 4 more cycles but at the reduced rate of 37.5 mg/day. Our strategy was to continue to take Sutent until it gained FDA approval because if I left the study my access to Sutent would be gone. Once FDA approved, we made the decision (along with my doctor) to stop taking Sutent. That was on 4/30/06 and I have not had any signs of tumors since Feb. of 2006. While on Sutent, I did have the common side effects: fatigue; nausea; diarrhea; dehydration; taste change; some mouth sores; and even a change in hair color. We learned some "tricks" along the way to deal with most of these side effects. Attitude and humor played an important role also. I've often referred to Sutent as the "wunderdrug" and some folks take exception to that classification. I'm not trying to offend anyone but given our experiences and the fact that just 3 years ago the treatment options for RCC were fairly limited, I consider all of these new cancer drugs (Nexavar; Sutent; Torisel) to be miracle drugs. They may not work for everyone and they may not completely wipe out RCC but even if they buy us some time, a true "cure" might come along. I like that mental approach.   Today I am monitored every 3 months with a PET/CT scan and I feel great. My spouse of 27 years is unbelievable. Her support reminds me so much of the other caregivers that I read about on this site and others. We are not sure why we have been so lucky or blessed through our journey but we truly feel that our purpose is to help others. We share our story often and have encountered folks with esophageal; kidney and liver cancer. It seems like we all have an instant bond and we encourage them to ask us any and all questions. While we are not educated as doctors we have gotten quite an education :)

7/7/08 Update:

It has been about 29 months since any signs of cancer and 27 months since I last took Sutent. My doctor continues to monitor me every 6 months via a CT/PET scan. My wife and I continue to help educate others to cancer in general and Sutent specifically.

11/11/08 Update:

Nov. scan is clear, no signs of RCC.  This translates into 33 months since any signs of cancer and 31 months since I last took Sutent.

Regards,

Your friend Bunker.

Bunker,

 That is great news and it is so refreshing to hear good news concerning RCC.

Perkins7

On 11/14/2008 Bunker wrote:

Hello all,

Hard to believe that it's already been 5 months since my last scan. My wife (AKA Superstar Caregiver) and I met with my doctor this week and still no signs of the cancer. This means that it has been 33 months since any tumors and 31 months since I stopped taking Sutent all togther.

Bunker 

 

Hi Bunker I have been following your messages for some time about your progress, Im a new member and my name is pat and i live on the gold coast in australia. I was dx with kidney cancer in april 2007 and had my left kidney out, I had a renal vein which meant that I had scans to see where it had spread every three months, nothing showed up for 15 mths till the 3rd scan showed mets in the lungs, my oncologist put me on sutent at my request as my daughter is a pharmacist in a hospital and she knew all about it as it has good reviews.

Im now in the middle of my second lot of sutent after this I go for scans and bloods hopefully the sutent will have done some good, Im very positive, got a few side effects first time round one being the flu which really knocked me about but this time im feeling much better just tiredness and sore feet nothing compared to first time.

Its very good news with your scan results you are a inspiration to everyone with rcc and I hope your good results carry on forever.

what have you been doing since you are off the sutent , do you have good nutritous food any vitamins would love to hear from you with any hints etc as you seem to be a leader in this field, love to your dogs I have two sealyham terriors one is 12 and the other will be 15 in march but going well, have to say goodbye for the time being as golf is on tv.

kind regards pat

Hi Pat,

Thanks for your kind words.

One of the really important beliefs I have is to not let cancer control how I live my life. To that end I refer to Sutent as a miracle drug and truely believe that it has done it's job. This approach is also evident in my eating habits. First, I've not really changed anything dramatic. I try to control the amount of food that I eat but not to where I starve myself or do without. For me, that just makes me want to eat more. I do try to limit my intake of carbohydrates, especially sodas. I will also say that I lead a pretty boring life---no drinking, no smoking, and not a lot of sweets. I'm not sure if this is the secret or not. I do laugh/joke a lot and I feel that this is great therapy. I think pets really help too. For my wife and I, dogs. I love your intesrest in golf. In fact we have 4 "golf" dogs---all Boston Terriers (Birdie; Bogey; Divot; and the well-known one, Bunker). See, there's that sense of humor sneaking in. 

The stuff above was probably not real helpful but if you have questions about Sutent or how to deal with some of the side effects please ask. We learned a few tricks along the way that worked for me.

Your friend,

Bunker. 

Hi Bunker

Thanks so much for your quick reply, yes we do love the golf in this household my husband plays 3 times a week, and you have boston terriers mine are a welsh dog sealyhams look like scotties only white.

Did you get sore feet because thats what i have at the moment and a real pain in fact the skin is coming off under the heel and its quite raw and very sore to walk on, have been using udder cream but it does't seem to do much good for me, other then that Im doing real good with the sutent for the second cycle only another 8 more tablets then I have ct scans and bloods done looking forward to good results.

kind regards

pat 

Good afternoon Pat,

I was lucky as I did not have the foot problems that you described. However, what I understand from my doctor is that they do see this side effect frequently and it seems to be due to the skin getting really thin. Weight seems to esculate this problem. I have read about people who have used udder cream but that does not appear to have worked for you. Other solutions I've seen mentioned are to wear soft shoes or slippers when possible or even use a riding cart. You might check with a company that caters to diabetics as foot problems are also a concern with that particular disease. Sorry that I did not have a better answer.

Your friend,

Bunker

Pat,

My father used asper cream (extra strength) for his feet when he was on sutent and it seemed to help ease the soreness.  He did have his entire layer of skin on his foot peel off before that.  I have also heard that icing your feet can help prevent the blisters from forming, my dad wasn't crazy about that idea though.  Best of luck!

 It certainly is wonderful to read about Bunker's terrific scan results!

Hope this helps!