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constance08's picture
constance08
Posts: 7
Joined: Aug 2013

my 50 year old husband was recently diagnosed with right kidney cancer 2 weeks ago its stage 4 with multiple mets to pelvis, spine and lungs. biopsy has been done but while he is waiting for the results they have started him on sutent 25mg daily, steroids, just completed 5 rounds of radiation on his spine can anyone tell me anything that might help. He could not have the nephrectomy as his vena cava is encased by a portion of the tumor and could not be safely resected. Up until 3 weeks ago my husbands health had been excellent and in fact he had a total hip replacement 1 year ago for arthritis caused by years of playing soccer where he had full lood work, a ct, chest xray and bone scan prior to and nothing showed up, We live in Canada have 3 daughters and we are having a difficult time trying to understand all the information and I am hoping someone on this site my be able to help.

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Constance,

 

There are a number of  persons in our group who have been dealing successfully  with Stage IV and they should hopefully be on to help you soon. I was one of the lucky ones who was caught early so I can not help you from my personal experience. But I can hope and pray for your huband to beat this beast.

 

Icemantoo

 

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I'm sorry you and your family are shaving to deal with this. My 41 year old husband was diagnosed with stage 4 in March. He also did not have a nephrectomy, although it seems most do have that surgery. I can appreciate the shock you must be feeling. We try to focus on living and enjoying life. Some days are easier than others, but we recognize that we can't change the future by worrying about it. 

There are a lot of really knowledgeable people here. Maybe if you ask specific questions that would help people to help you. Also, there are past threads where you might find some good information. 

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Wow.. sounds difficult.. but there is a lot of hope..  I thought someone else may have given you suggestions.  But it would help if we knew where you are and who-where is giving treatment.   Sometimes people do not see the right doctor and people here can give further information.    I am saying this, as biopsy is unusual with what is being called Stage 4 Cancer.   And I had Renal Vein invasion, yet surgery went very well for me, but I had a Kidney Cancer specialist surgeon, he sees this type of situation about 10 times a year, here at Stanford, Ca.

Ron

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

As others mentioned, there are some very experienced, very wise people here who can and will provide some insights. I encourage you to come here often.  Folks like Texas Wedge, FoxHD, Nanosecond, GSRon, Alice, One putt to name only a few will be able to be more specific, more technically enabling about what you might expect.

Others, like me, can only offer our support  and our good wishes. Well, that and prayers!

Stay with us, we all differ in our gifts and our abilities, but we all share the hatred of RCC and the experience of carrying on the fight. We are all connected and have great affection for each member of this group.

Michael

Darron's picture
Darron
Posts: 222
Joined: Jun 2013

I was diagnosed with stage IV as well in October 2012. Full right a kidney removal followed within a week. Remaining tumor in my left adrenal gland is being treated with Sutent and a trial drug called Nivolumab. two mets in my lungs have completely disappeared and the tumor in my adrenal gland is down from 3.8 cm to 5 mm or less.

I agree with Ron, 2nd opinions are a good thing. It seems odd to put you on Sutent and not start at 50 mg (maximum dose). I was on 50 mg for my 1st 5 cycles and dropped to 37.5 as side effects became a bit too much to carry on daily life as normal.

My current oncologist was recommend by a friend who happened to be a colleague Of my oncologist. My urologist was not going to refer me to an oncologist because he "got it all in surgery". He never saw the other adrenal mass.

I am not suggesting that your doctor is wrong about not being able to perform the surgery, or your dosing on Sutent, but another expert opinion never hurt anyone.

let everyone know where you are locatedlot here are great kidney cancer doctors scattered, maybe someone here can throw out a name for a 2nd opinion. I would say make sure that they are a kidney cancer specialist, not just an oncology doctor.

sorry to meet like this. Kidney cancer sucks, but it is not a disease that can't be attacked. I am living proof of it.

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

 want to thank you today when we met with our lead oncologist he agreed to increase the sutent dose to 37.5 and explained that the zometa will be given every 4 weeks by iv infusion, We will also be seeing the radiologist to see if there are any areas of bone mets that he may be able to radiate. I would probably not known what questions to ask or even what to hope for if you had not have shared your information with me. Thank you so much.

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Hi Constance,

I am on a short vacation right now - with limited internet access.  However, one year ago I was diagnosed with stage IV mRCC with (only) bone mets located in 3 places - my left femur (hip/thigh); my sacrum (base of my spine); at T4/T5 vertebrae (about shoulder-blade level).

I started on Sutent at maximum dosage (50mg/day 4wks on/2wks off). I find it a bit troubling that your husband is not being started at this dosage.  I believe 25 mg is too low (at least I know it is for me). 

Most important - he must also be put on either Xgeva (Denosumab) or Zometa (Zoledronic Acid) along with Sutent.  Sutent rarely if ever is effective against bone mets WITHOUT the addition of either one of these drugs.  Of the two, I would prefer Xgeva because it works faster; does not stress the kidney in any way; is administered once a month by shot; likely works in additional ways to suppress the formation of new mets.

Regardless, this therapy can be quite effective.  After one year I still have had no new mets appear and all my bone lesions are either shrinking; stable; or showing new bone growth.

Also, I have been fortunate in that I have suffered no significant side effects while taking Sutent.  This is not a fluke (I feel).  It is due to my special diet and certain supplements I take.  What I am doing is based on the latest science and lab research on cell metabolism and other isssues related to deciphering what is "healthy" nutrition.

Happy to share the results of my research and my own personal experiments if you (or anyone) is interested.  Just send me an email at:

n.feldman@videopost.com

And I will send you my guide to "proper" nutrition.  It is presently about 58 pages long (.pdf file).

Hang in there and try to ease him off of or go easy on those steroids.

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

I'm sorry they put you through the biopsy :(.  I had one 9 days ago myself (2nd try too) and it is no picnic.  I've already told my doctor I will never do another one. 

 

I'm in Canada too- please feel free to message me if you'd like to chat or share info.  I'm available anytime you need.

 

Hugs.  Best wishes from your fellow Canuck.

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

where in canada are you being treated?

 

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

I want to thank you today when we met with our lead oncologist he agreed to increase the sutent dose to 37.5 and explained that the zometa will be given every 4 weeks by iv infusion, We will also be seeing the radiologist to see if there are any areas of bone mets that he may be able to radiate. I would probably not known what questions to ask or even what to hope for if you had not have shared your information with me. Thank you so much.

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

I want to thank you today when we met with our lead oncologist he agreed to increase the sutent dose to 37.5 and explained that the zometa will be given every 4 weeks by iv infusion, We will also be seeing the radiologist to see if there are any areas of bone mets that he may be able to radiate. I would probably not known what questions to ask or even what to hope for if you had not have shared your information with me. Thank you so much.

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

Thank you so much for all your information, You have all provided us with information we would not have been able to access on our own and certainly i will be questioning our dr's in the morning about the sutent strength. My husband was given zometa but we were not told that he would have it routinely only that he would get it if his calcium levels increased again. We live just outside of toronto ontario but our dr's have referred him to the juravinski cancer center in hamilton ontario his primary care physicain is a dr. sebastien Hotte a medical oncologist. I am not aware of any oncologists in our area who deal specifically with kidney cancer. My family and I thank you all so much for all your information and I have to tell you I am feeling hopeful for the first time in the past 2 weeks.

 

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Happy to assist in any way I can.

I think that you will find that most everyone here will advise you to seek out an oncologist who is well familiar with RCC (renal cell carcinoma) if it is at all possible.

However, Zometa must be given routinely (I believe the routine is an infusion once a week but I may be mistaken since I take Xgeva) - and the dosage must be correct (that is, much higher) in treating bone mets and should not just be based on your husband's calcium level. 

I actually also consult every 6 months with a bone cancer specialist (in addition to my local oncologist) just be on the safe side.

I wish I could give you much more specific information about finding doctors in your area but I know very little about how the Canadian medical system works.

 

-N

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

I know a lot how the Cdn system works.  Every second opinion/specialist etc requires a referral.  We are free to find a Dr's name, and request to be seen by them, but not every referring doctor is willing or able to.  My Gp just told me on Friday she cannot refer out of province (Canada is made up of provinces-similar to states, but we only have 10) as her licensing doesn't allow her to.  I'm on the hunt now for a dr who can. 

 

The Juravinski centre is excellent, and one of the few places I'm willing to access if I can.  They are a state of the art agency with many renowned specialist.  You will be in good hands!

Vivaldi
Posts: 19
Joined: Jun 2013

I wish I could remember the name of the urologist in Toronto I was told about, he is the absolute top guy in the country.  He is running a huge kidney cancer study too.  All I know is he is at the Princess Margaret Hospital, one of the hospitals involved in the study and also works out of U of T as well.  Find out who is doing the study there, that is the guy to see.  My urologist studied under him and is involved in the study too.  You want the best, he is the best.  Being enrolled in the study means having access to drugs you might otherwise not get.  Good luck to you, this is a terrifically difficult thing to face, wishing you strength on your journey.

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

Vivaldi:  I think you're referring to Dr Michael Jewett?  at UHN.  Yes, he looks like the go-to guy!

 

Or Dr Anil Kapoor in Hamilton.  I imagine she's seeing him or one of his colleagues. 

 

 

 

I am alive
Posts: 221
Joined: Jul 2012

Constance

  There is another website you may or may not know about called SmartPatients.com which,  like ths site, is all about cancer patients and caregivers sharing vital information and experiences. There is a Canada-specific thread over there with links to Canada RCC help sites. I believe it's called someting like "hello Canadian and other international RCC patients." Between SmartPatients.com and this site you will get quite an RCC education!

  Regarding the tumor that is strangling your husband's vena cava, I had a tumor between my aorta and vena cava and found a surgeon who specializes in removing tumors from that area. Now, I don't know if that is at all relevant to where exactly your husband's tumor is and what it is doing, but I'll share that name with you. He is Dr. Joel Sheinfeld at Memorial Sloan-Kettering in NYC. He specializes in retro peritoneal lymph node dissection or RPLND.  

 Sometimes doctors put patients on drug therapy first in hopes of shrinking the tumor before attempting surgery. I wholeheartedly agree with the suggestions above to find an RCC specialist to honcho your husband's overall treatment.

 Wishing you all the best. Take one day at a time. You WILL get a handle on this.

 

Peg

srbelle1
Posts: 123
Joined: Jul 2013

My name is Sarah and we live in Northern CA; my husband was dx on July 1, 2013 with a large mass on his right kidney and mets to the lumbar and thoracic parts of the spine.

He had a spinal resection, fusion to the lumbar region to avoid compression and paralysis. 

Prior to dx, he was active and playing tennis 1-3 times a week; in fact, he was set to play on the day of dx. Based on a partial MRI which 2 doctors said was incomplete, he was told he might have a year to live and considered him stage IV.

After the spinal surgery, he was evaluated by an e experienced oncologist and told that he should get radiation for the lumbar to take out any microscopic disease as well as cyber radiation to the thoracic met which is small and then a nephrectomy. His thought was that reducing the cancer load might lead to either slowing down the cancer or regression. After he is done, the onc thinks he should be seen every 3-4 months and if there is metastasis, the targeted medications would be used.

A far different approach than the first onc; my husband's timing was messed up when he spent 15 days dealing with a partial small bowel obstruction. Thankfully it resolved without surgery. He lost 10 pounds and we are trying to have him weight. He is slim and those 10 pounds are significant. The obstruction had nothing to do with his cancer nor did it reveal any type of other cancer.

Has anyone had this approach? I am so grateful to have found this foliklik

Like all of you, this dx was stunning and the summer has been hell. 

We have a 9 month old granddaughter and another grandchild due in March. From the time we were in our 20's, he has dreamed of grandchildren and I want to do whatever is needed to make sure that his dream of grandchildren will come true.

Very glad to have found this forum and look forward to your responses; thanks in advance. Sarah aka srbelle 1

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Hi Sara.. you said you are in Nor Cal, but please be a bit more specific..   I go to Stanford, and also we have UCSF, both have excellent doctors.    It is important that you have a true "up to date" Onc and because the Kidney Operation is not done yet, you need a Kidney-RCC specialist surgeon.   Please do not take this lightly...  With Mets, that means stage 4, and proper treatment is out there..  Yes 90 day follow ups is very normal for late stage RCC.  The idea is to catch any new growths early and go after them.  Please read some of the stories here, and I think you will see that there is a distinct path to a potentially much longer life.  Yes it is scarey.. yes it is intense, but.. it can be rewarding to be your own advocate and take control.

I should add, that whereever you go for the surgery, that Dr MUST get proper scans to be sure he/she knows exactly what is inside, before surgery.  In my case I had Renal Vein Invastion and that was a lot longer more complicated surgery, but it saved a second surgery at a minimum.  My Dr knew what to do and did it very well...

Good Luck..

Ron

srbelle1
Posts: 123
Joined: Jul 2013

We live in San Rafael and my husband is being treated at UCour his oncologist is Chuk Ryan and the surgeon is Dr. Max Meng. Both are very experienced with this disease.

We have not taken this lightly; this has taken over our lives; radiation is at what used to be Mt. Ziom. I am very worried about the weight loss from the intestinal obstruction and current lack of appetite. Radiation is really wiping him out and this is not good for his upcoming nephrectomy. 

I used to envy his metabolism and the fact that he had not gained a pound since I have known him. Now, that metabolism will make it difficult for him to gain weight.

 

srbelle1
Posts: 123
Joined: Jul 2013

I meant UCSF and Dr. Chuck Ryan as oncologist. 

GSRon's picture
GSRon
Posts: 1253
Joined: Jan 2013

Sorry srbelle.. I should not of used the word "lightly"  should of said to stay dilligent.  Regardless of who the Docs are, they can be "human" too..  Lots of good info here in past postings.. being the patient advocate can help big time..! 

Ron

srbelle1
Posts: 123
Joined: Jul 2013

Ron:

Apology not needed; your intent was to wake me to the seriousness of this disease. From my experience on breast cancer forums in the '90's, it is patients who provide the best information on all related treatments and side effects.

 

I am learning about these new, promising treatments which have some not-so-great side effects.

 

Will keep reading despite a growing anxiety and sadness.

 

thanks, Sarah

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

I have been Through much of the same journey since march 2011. Active, fit and strong. Next thing it is a nephrectomy with enough mets to fill a football team roster. I was fortunate to have been on the trial drug nivolumab for 18 months with awesome results. But after a few new mets, I am now having Il-2. Still awaiting ct scans on that. However the point is that we are still leading happy productive lives. Concentrate on the goal. Don't waste time worrying. That is unrecoverable time lost. Be proactive. Research your options and persue them. Stay in the drivers seat. And be sure you have the rifght doctors.

constance08's picture
constance08
Posts: 7
Joined: Aug 2013

thank you for your response wishing you well with your nexr scan.

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