Husband Diagnosed with Kidney Cancer, Stage 4

alice124

Hello everyone. I've been a lurker on your discussions for the past couple of weeks and was a little intimidated to submit as everyone here seems very knowledgeable about options, tests, labs, etc. and I'm pretty much clueless. But I do believe sharing information and getting it out there is part of the key to some day find answers. And since my husband isn't ready to post just yet, I've decided to start without him and perhaps he'll join in. I'll start with a little history. First, John, my husband, was diagnosed with Stage IV kidney cancer on October 15, 2011, after being referred to an internist at Johns Hopkins Hospital in Baltimore. The reason for the visit was weight loss, which had been occurring since the beginning of the year. However, other than weight loss and an occasional cough, he felt fine. And the cough didn't cause great concern because his siblings (3 sisters and brother) all have a cough of unknown origin, though they have been tested extensively. Anyway, since the weight loss started John has seen his primary doctor numerous times and had blood work done, thyroid testing, colonoscopmy, endoscopy, xrays, etc. and everything was perfectly normal -- excellent in fact. However, the weight loss continued and his primary suggested he see an internist. His appointment with Dr. Wooster, a Hopkins Internist, was scheduled for October 14, 2011. Dr. Wooster ordered catscans amd scheduled John to return in a week. But later that same day, he called John and asked him to meet with him at noon the next day and to bring me. When John called me at work and told me that I became physically sick, knowing this couldn't be good. The next day Dr. Wooster showed us the catscans with a very large tumor on the right kidney and several nodules in his lungs. Next meeting was with a renal surgeon at Hopkins, Dr. Allaf, who scheduled kidney surgery on November 1. John underwent a radical nephrectomy of his right kidney. Next visit was with Dr. Hans Hammers of Hopkins who after several visits told John he believed he was an excellent candidate for IL-2 therapy. So his first high dose IL-2 treatment began on January 3, 2012. During the first round he had 14 doses, an incredible feat according to Dr. Hammers. However, once he came home that weekend, he experienced edema, terrible itching, extreme fatigue, etc. for several weeks. In fact Dr. Hammers postponed his second round which was scheduled to begin on January 26 to January 31. During his second stent, he received 10 doses. Again, upon coming home from the hospital, the side effects were tough. Again terrible itching, some nausea, thrush, and again extreme fatigue. Dr. Hammers commented that John was kind of unique in that his body tolerates the quantity of doses well, but the side effects and the length of time it takes for him to bounce back are longer and more difficult than it is for most. Now we're waiting to have the catscans to see if the IL-2 has helped. He's scheduled for March 15. Do you believe he chose the "ides of March?" But it's also his mom's birthday, hopsfully that makes it okay. . . Will keep you posted. Sorry if I've left out pertinent info; I'm new at this.

icemantoo

Good Hands
Alice123,

Your husband is in good hands at Johns Hopkins. A family member of mine had surgery there over 20 years ago. I for one would not want to comment medically regarding your husband's treatment other than to observe in my 9 and 1/2 years as a survivor that the outlook for those with stage 2, 3 and 4 has substantially improved. Others may chime in who are familiar with the treatments your husband is receiving. Hopefully he is on the road to recovery.

Best wishes,

Icemantoo

Texas_wedge

Information
Alice, sorry you're both having such a rough time.

We're only a little more informed than you are and only because we've been here for a bit, learning from each other and researching what we can. A cancer diagnosis has a wonderful way of focussing one's attention! Before long you'll be as "expert" as we are.

I'm a little surprised that your Husband has been hammered with IL2 treatment. Was it explained fully why this treatment was selected? Let's hope it was the best choice and pays off. Do you know what Grade his tumour was, aside from being Stage 4?

Do keep us posted so we can offer what thoughts and support we can muster between us.

PK_Chicago

Good Luck!
That's the whole idea of a discussion forum!

My advice is ask a lot of questions and do your homework! The web can be a comfort and a curse - you'll read one thing that's positive and the next that's not.

When I was diagnosed I started a Word document where I would snip things I came across on the web and used it as a reference for doctor discussions. It also helped to create a calendar and track everything. If you keep organized it won't seem so daunting.

Most important - stay close to your husband! Talk about things - everything! I don't know what I would have done without support from my wife! She has kept my spirits up the entire time - it will be a lifelong battle!

Good luck!

PK_Chicago

garym

Welcome to the club...
Alice,

You need not worry or feel intimidated here, all are welcome and we try very hard to help each other, especially the new members like you, as much as we can. In many ways RCC can be harder on caregivers than actual patients, you experience the same fears and emotions, but while we are allowed to kick, scream, get angry, and vent, you likely have been maintaining a brave and calm front. You can come hear to kick, scream, be angry, and vent whenever you need to, we understand. We'll also try to help with any questions you might have.

I would echo what the iceman has said, you are in very good hands. Trust the team that you have picked and stay the course. I don't have personal experience with IL2, but it is one of several newer treatment options showing promise against RCC that were not available just a few years ago. Much progress has been made and we all hope the "magic bullet" is just around the corner.

Good luck and Godspeed,

Gary

alice124

icemantoo said:

Good Hands
Alice123,

Your husband is in good hands at Johns Hopkins. A family member of mine had surgery there over 20 years ago. I for one would not want to comment medically regarding your husband's treatment other than to observe in my 9 and 1/2 years as a survivor that the outlook for those with stage 2, 3 and 4 has substantially improved. Others may chime in who are familiar with the treatments your husband is receiving. Hopefully he is on the road to recovery.

Best wishes,

Icemantoo

9 and 1/2 years - congratulations
Icemantoo,

Comments like yours make me feel I've come to the right place. Thank you.

alice 124

alice124

Texas_wedge said:

Information
Alice, sorry you're both having such a rough time.

We're only a little more informed than you are and only because we've been here for a bit, learning from each other and researching what we can. A cancer diagnosis has a wonderful way of focussing one's attention! Before long you'll be as "expert" as we are.

I'm a little surprised that your Husband has been hammered with IL2 treatment. Was it explained fully why this treatment was selected? Let's hope it was the best choice and pays off. Do you know what Grade his tumour was, aside from being Stage 4?

Do keep us posted so we can offer what thoughts and support we can muster between us.

IL-2
Dr. Hammers explained that this was the best option because is was the most difficult treatment, and--if he were to start other medications--he probably would not be strong enough to undergo IL-2 at a later date.

Here's the info from his lab report: Fuhrman grade 4 with focal sarcomatoid features. Tumor size was 7 cm. pT3b.

Thanks for your response and interest.

Texas_wedge

alice124 said:

IL-2
Dr. Hammers explained that this was the best option because is was the most difficult treatment, and--if he were to start other medications--he probably would not be strong enough to undergo IL-2 at a later date.

Here's the info from his lab report: Fuhrman grade 4 with focal sarcomatoid features. Tumor size was 7 cm. pT3b.

Thanks for your response and interest.

IL2
Thanks for the info. Alice. That sounds a strange rationale to me.

Ironically, I may have more interest than either of us anticipated. My path. report is: Fuhrman grade 4, almost entirely sarcomatoid, tumour size 9cm and pT4. Your Husband's histology is probably clear cell -? (Mine chromophobe -> sarcomatoid).

livealive

garym said:

Welcome to the club...
Alice,

You need not worry or feel intimidated here, all are welcome and we try very hard to help each other, especially the new members like you, as much as we can. In many ways RCC can be harder on caregivers than actual patients, you experience the same fears and emotions, but while we are allowed to kick, scream, get angry, and vent, you likely have been maintaining a brave and calm front. You can come hear to kick, scream, be angry, and vent whenever you need to, we understand. We'll also try to help with any questions you might have.

I would echo what the iceman has said, you are in very good hands. Trust the team that you have picked and stay the course. I don't have personal experience with IL2, but it is one of several newer treatment options showing promise against RCC that were not available just a few years ago. Much progress has been made and we all hope the "magic bullet" is just around the corner.

Good luck and Godspeed,

Gary

IL
Johns Hopkins is one of the best places for this, not that this is a match - but take comfort in knowing he is being treated by someone who knows and understand this.

IL2 I thought is usually for clear cell, but we don't know the pathology grade.

http://www.youtube.com/watch?v=Ga2fKAD5-uU

Tex - I think it makes sense the way the doctor handled this, Dr Dutcher in the above video says IL2 is the best shot at a cure, should it be needed. I am NOT qualified to write this, but, you know, hey, I wrote it anyway. Many minds, many opinions.

Alice, we feel the fear, the anxiety, not for someone else, but for each one of us ourself. It has been huge for me, but what can I do, so at some point I have to reconcile (new word, learned from Tex today) to what has happened factually, and what do I do now?

Do what you can, ask for help, question everyone, be cynical. If you'll have good doctors, great.

Raj.

foxhd

livealive said:

IL
Johns Hopkins is one of the best places for this, not that this is a match - but take comfort in knowing he is being treated by someone who knows and understand this.

IL2 I thought is usually for clear cell, but we don't know the pathology grade.

http://www.youtube.com/watch?v=Ga2fKAD5-uU

Tex - I think it makes sense the way the doctor handled this, Dr Dutcher in the above video says IL2 is the best shot at a cure, should it be needed. I am NOT qualified to write this, but, you know, hey, I wrote it anyway. Many minds, many opinions.

Alice, we feel the fear, the anxiety, not for someone else, but for each one of us ourself. It has been huge for me, but what can I do, so at some point I have to reconcile (new word, learned from Tex today) to what has happened factually, and what do I do now?

Do what you can, ask for help, question everyone, be cynical. If you'll have good doctors, great.

Raj.

Stage 4
You've come to the right place. Keep reading posts. Many of us understand the stage 4 concept well. As Iceman says, treatments have improved. Believe me. I know. Continue with your support. It IS harder for a loved one than the patient. Knowledge is power. Good luck.
Fox

alice124

alice124 said:

IL-2
Dr. Hammers explained that this was the best option because is was the most difficult treatment, and--if he were to start other medications--he probably would not be strong enough to undergo IL-2 at a later date.

Here's the info from his lab report: Fuhrman grade 4 with focal sarcomatoid features. Tumor size was 7 cm. pT3b.

Thanks for your response and interest.

It is clear cell w/sarcomatoid features
Sorry I thought I had written that, clear cell w/sarcomatoid features. I can't tell everyone how thankful I am for the response to my posting. I've joined a couple of groups prior to this and this one is much more active and triggers me to be more active, as I believe it will John once he sees how responsive and knowledgeable this group is. Plus John too was an active golfer prior to the nephrectomy. He decided to take temporary leave from the Club after the operation as he just didn't feel strong enough. I know he'll be envious of all of you still swinging away. I told him this morning about joining and about the response and he asked "what is my login?" Touchdown!!!

alice124

PK_Chicago said:

Good Luck!
That's the whole idea of a discussion forum!

My advice is ask a lot of questions and do your homework! The web can be a comfort and a curse - you'll read one thing that's positive and the next that's not.

When I was diagnosed I started a Word document where I would snip things I came across on the web and used it as a reference for doctor discussions. It also helped to create a calendar and track everything. If you keep organized it won't seem so daunting.

Most important - stay close to your husband! Talk about things - everything! I don't know what I would have done without support from my wife! She has kept my spirits up the entire time - it will be a lifelong battle!

Good luck!

PK_Chicago

Great advice
Thanks PK-can't tell you how valuable I'm finding this forum. I am trying to do what I can for John and we talk, talk, talk (probably more than he wants me to). Thanks for being there for everyone.

alice124

garym said:

Welcome to the club...
Alice,

You need not worry or feel intimidated here, all are welcome and we try very hard to help each other, especially the new members like you, as much as we can. In many ways RCC can be harder on caregivers than actual patients, you experience the same fears and emotions, but while we are allowed to kick, scream, get angry, and vent, you likely have been maintaining a brave and calm front. You can come hear to kick, scream, be angry, and vent whenever you need to, we understand. We'll also try to help with any questions you might have.

I would echo what the iceman has said, you are in very good hands. Trust the team that you have picked and stay the course. I don't have personal experience with IL2, but it is one of several newer treatment options showing promise against RCC that were not available just a few years ago. Much progress has been made and we all hope the "magic bullet" is just around the corner.

Good luck and Godspeed,

Gary

Thank you
Thank you Gary. In lurking around, I have seen quite a few of your postings and not only appreciate your knowledge, but your sense of humor. You're therapeutic for us all.

alice124

foxhd said:

Stage 4
You've come to the right place. Keep reading posts. Many of us understand the stage 4 concept well. As Iceman says, treatments have improved. Believe me. I know. Continue with your support. It IS harder for a loved one than the patient. Knowledge is power. Good luck.
Fox

thank you
fox - thanks. I can only say that while it may be hard, having this group available makes it easier. thanks for posting.

alice124

livealive said:

IL
Johns Hopkins is one of the best places for this, not that this is a match - but take comfort in knowing he is being treated by someone who knows and understand this.

IL2 I thought is usually for clear cell, but we don't know the pathology grade.

http://www.youtube.com/watch?v=Ga2fKAD5-uU

Tex - I think it makes sense the way the doctor handled this, Dr Dutcher in the above video says IL2 is the best shot at a cure, should it be needed. I am NOT qualified to write this, but, you know, hey, I wrote it anyway. Many minds, many opinions.

Alice, we feel the fear, the anxiety, not for someone else, but for each one of us ourself. It has been huge for me, but what can I do, so at some point I have to reconcile (new word, learned from Tex today) to what has happened factually, and what do I do now?

Do what you can, ask for help, question everyone, be cynical. If you'll have good doctors, great.

Raj.

just watched video
thanks for reference; just watched it. I also follow Chris Battle's postings who underwent IL unsuccessfully but is knowledgeable and has the same Dr. as John. If anyone is interested in IL2 or other kidney cancer treatments (because he's had several), he's a good source and a good read. thanks again.

Roggy

Good Luck
Good luck to you both !!

rae_rae

Roggy said:

Good Luck
Good luck to you both !!

in my prayers
Alice and John,

You will both be in my prayers. This is a great forum. I am glad you are posting and not lurking anymore. There is a lot of encouragement to be found here, along with humor and golf banter. Keep the faith.

God Bless,

Rae

LISAinTN

Welcome
Hi Alice,

I am glad you found this site and glad you have joined in here. I hope John, (if he hasn't already) feels like joining us soon. There is comfort here, for us all, in talking with other's that have walked in our shoes. It's not just a little community, but a family here. You are both in my prayers.

Blessings,
Lisa

alice124

LISAinTN said:

Welcome
Hi Alice,

I am glad you found this site and glad you have joined in here. I hope John, (if he hasn't already) feels like joining us soon. There is comfort here, for us all, in talking with other's that have walked in our shoes. It's not just a little community, but a family here. You are both in my prayers.

Blessings,
Lisa

so glad I've joined
thanks for the nice words everyone. I feel very fortunate to have found you (kidney cancer survivors). The warmth, hope, and information given here is a gift and so comforting.

With John's catscan scheduled for Thursday, I have butterflys and am sure it will only get worse as the minutes tick by. John I believe is ready to join. He already knows a lot of you by signon name and will ask me what's new on the site? I'll continue to encourage but don't want to push too hard. I want it to be his decision.

I know he is nervous about Thursday; we just deal with that nervousness differently. He has a tendency to get a little quiet (or maybe it's his absorption in the golf tournament) and I become the energizer bunny, unable to sit still.

Thanks again for continued support and prayers. Back to you all!

Texas_wedge

alice124 said:

so glad I've joined
thanks for the nice words everyone. I feel very fortunate to have found you (kidney cancer survivors). The warmth, hope, and information given here is a gift and so comforting.

With John's catscan scheduled for Thursday, I have butterflys and am sure it will only get worse as the minutes tick by. John I believe is ready to join. He already knows a lot of you by signon name and will ask me what's new on the site? I'll continue to encourage but don't want to push too hard. I want it to be his decision.

I know he is nervous about Thursday; we just deal with that nervousness differently. He has a tendency to get a little quiet (or maybe it's his absorption in the golf tournament) and I become the energizer bunny, unable to sit still.

Thanks again for continued support and prayers. Back to you all!

Quietness
Alice, believe me, it will be the golf tournament.

alice124

Texas_wedge said:

Quietness
Alice, believe me, it will be the golf tournament.

quietness
think you're right!