Wife of a cancer survivor

cheatinlil said:

I'm new and just need someone

I'm new and just need someone to hold me pwease I'm scared!  Here is my About Me pasted for feedback:

We were only dating at the time but around 12/5/2012 my (now husband) boyfriend had a tumor and laparoscopic resection of the right kidney.

Around 6/7/2014 - We thought my husband had kidney stones but they ran extra tests.

On 6/11/12 we met with an oncologist and she "said" my husband has stage 1 recurring kidney cancer that has metastasized (he has 2 tumors in the lungs and several in the abdomen).

On 6/17/2014 we are going to MD Anderson to get a second opinion because what I have learned online is that you can't be both "Stage 1" and "recurring and metastasized" together.

My husband has rheumatoid arthritis and high blood pressure.

Hi, I am so sorry to hear about your husband, I know how frightened you right now. I also had reoccurring kidney cancer stage 1. I had a partial nephrectomy to remove a tumour under 5cm, and within eight months it had metastasized. I have tumours around the original site, medastan between my lungs, in both lungs, also cancer in my lymph. There are some pretty successful treatments around now, they are not curative but can keep the cancer under control. I am on Votrient at the moment, this has been my first line of treatment so far.

You are very wise getting a second opinion, I assume you are seeing a kidney Oncologist. They will come up with a plan to help your husband fight this. Don't despair, stay as positive as you can, it's difficult I know. I will be thinking of you both and keeping you in my prayers. You are not alone, we will support you through this, sending you a big HUG:)

Djinnie xx

cheatinlil said:

I'm new and just need someone

I'm new and just need someone to hold me pwease I'm scared!  Here is my About Me pasted for feedback:

We were only dating at the time but around 12/5/2012 my (now husband) boyfriend had a tumor and laparoscopic resection of the right kidney.

Around 6/7/2014 - We thought my husband had kidney stones but they ran extra tests.

On 6/11/12 we met with an oncologist and she "said" my husband has stage 1 recurring kidney cancer that has metastasized (he has 2 tumors in the lungs and several in the abdomen).

On 6/17/2014 we are going to MD Anderson to get a second opinion because what I have learned online is that you can't be both "Stage 1" and "recurring and metastasized" together.

My husband has rheumatoid arthritis and high blood pressure.

Glad you found this site and sorry for all you and your hubby are enduring.

Know that you won't go through this alone, but here, we offer understanding and support, no matter what.

Sending you a warm hug~let us know how YOU are doing ok? We'll walk this journey along side you both.

Jan

I am so sorry to hear about your husband, It is a wise decision to take a second opinion and as we know about medical advancement so stay positive your husband will be cured for sure...:)

cheatinlil said:

Update

I wanted to give yall feedback before I respond to everyone.

The appointment was great.  He seemed more knowledgeable and positive.  Plus they handle everything.  They setup the appointment with the urologist.  They setup the Cat scans and pet scans.  I didn’t have to make the other appointments.  They setup our next appointment with the oncologist in a reasonable timeframe. 

So he recommended we start with Votrient on Wednesday and see how he responds.  In 3 months we will go back for rescans.  Surgery is an option down the line.  The other oncologist recommended first surgery then 4 weeks later Votrient. He said the treatments are improving by the day and has drastically improved since his last surgery 2 years ago. 

Yall, I’m sorry if this seems incentive please be gentle with my ignorance but I want to be realistic. I asked him if the best case scenario is that we fight and continue to fight that it is realistic to think we will be ok for 13 plus years.  He said he could say that a very short time ago advanced kidney cancer would make it 24 months. I was too scared to press him for what that meant in fear of worrying my husband.  Does that mean this fight is a 2 year battle or that 2 years used to be the life expectancy?  Me and my husband are very optimistic people.  However I am more of a realist and he is more of a “head in the sand” type of person.  I’m beating myself up for asking and still wanting an answer L

 

GSRon

Thanks for being here

You are right!  One of my dates should be 2014 and not 2012!  I can’t figure out how to change it.  J

 

DJinnie

My husband starts Votrient on Wednesday.  We are expected to meet with an Oncologist before Wednesday.  Fingers and toes crossed!  Thanks so much for your prayers.

 

Apny

Thanks for your feedback.  I am reading until so much info it is hard to absorb it all.

 

Jan4you

Thanks for the HUG! And I’m sending one right back at you!

 

Foxhd

Thanks you for the advice.  I’ve read some of your posts and you seem like a real positive straight shooter! J

 

Neelcancer

Thank you for putting the word “cured” in your post.  From what I read some of the battle is the battle of the mind!

Hi, 

I am glad to hear everything went so well, it sounds like you are in good hands now. Sometimes it takes a little footwork to find the right team of Doctors, the Oncologist has to be a good fit. It took me awhile to find one I was happy with. Are they starting your husband on 800 mg?

Nothing comes with any surefire guarantee, staying optimistic is the best way to be. Being a realist or a head in the sand type, I think maybe a little of both works. I am very aware of my predicament but I would not pose the question of time limit. We are all different, so many things factor into a life expectancy, who could possibly supply a definitive answer. Who would want to work toward a timeline?just work toward a future, it is less restrictive:)

All the best with the meds:)

Djinnie x

cheatinlil said:

Update

I wanted to give yall feedback before I respond to everyone.

The appointment was great.  He seemed more knowledgeable and positive.  Plus they handle everything.  They setup the appointment with the urologist.  They setup the Cat scans and pet scans.  I didn’t have to make the other appointments.  They setup our next appointment with the oncologist in a reasonable timeframe. 

So he recommended we start with Votrient on Wednesday and see how he responds.  In 3 months we will go back for rescans.  Surgery is an option down the line.  The other oncologist recommended first surgery then 4 weeks later Votrient. He said the treatments are improving by the day and has drastically improved since his last surgery 2 years ago. 

Yall, I’m sorry if this seems incentive please be gentle with my ignorance but I want to be realistic. I asked him if the best case scenario is that we fight and continue to fight that it is realistic to think we will be ok for 13 plus years.  He said he could say that a very short time ago advanced kidney cancer would make it 24 months. I was too scared to press him for what that meant in fear of worrying my husband.  Does that mean this fight is a 2 year battle or that 2 years used to be the life expectancy?  Me and my husband are very optimistic people.  However I am more of a realist and he is more of a “head in the sand” type of person.  I’m beating myself up for asking and still wanting an answer L

 

GSRon

Thanks for being here

You are right!  One of my dates should be 2014 and not 2012!  I can’t figure out how to change it.  J

 

DJinnie

My husband starts Votrient on Wednesday.  We are expected to meet with an Oncologist before Wednesday.  Fingers and toes crossed!  Thanks so much for your prayers.

 

Apny

Thanks for your feedback.  I am reading until so much info it is hard to absorb it all.

 

Jan4you

Thanks for the HUG! And I’m sending one right back at you!

 

Foxhd

Thanks you for the advice.  I’ve read some of your posts and you seem like a real positive straight shooter! J

 

Neelcancer

Thank you for putting the word “cured” in your post.  From what I read some of the battle is the battle of the mind!

What a Bi.... to join this club. But welcome, anyway.

You will find that there are new letters and numbers attached to your hubby's diagnosis.

Because it has gone (metastasized) beyond the kidney, is is Stage IV.  Then, it's described with  T#N#M# .

T(Tumor) #.  T1 is a tumor under 7cm. T2 larger than 7cm.

N may have nothing after it if no positive nodes have been found.  Or N1 is if there have been positive nodes found but an undetermined number.

M may have nothing if there is no mets to another organ. Or M1 if there are mets to at least one positive organ.

The MD Anderson doc who said 24 months----that was an old number for several years ago.  Prior to the develpment and testing of several of the newer drugs such as Votrient.

To give you lots of hope, I was told at Dx that I might live 5-7 months without any treatment.  I had a very lengthy and invasive surgery to remove right kidney, set of nodes, left half of liver and several biopsy wedges from the right lobe, and a congenitally defective gall bladder.  When it was over and the path came back, I was thrown into the research pot of Stage IV, T2,N1,M1.  That was 8 years ago.  It recurred over the following two years in single nodes, which were both removed.

So put on your work clothes and prepare to get him through this situation.  Then put on your party clothes to celebrate every year.

Good Luck.

Donna

cheatinlil said:

Update

I wanted to give yall feedback before I respond to everyone.

The appointment was great.  He seemed more knowledgeable and positive.  Plus they handle everything.  They setup the appointment with the urologist.  They setup the Cat scans and pet scans.  I didn’t have to make the other appointments.  They setup our next appointment with the oncologist in a reasonable timeframe. 

So he recommended we start with Votrient on Wednesday and see how he responds.  In 3 months we will go back for rescans.  Surgery is an option down the line.  The other oncologist recommended first surgery then 4 weeks later Votrient. He said the treatments are improving by the day and has drastically improved since his last surgery 2 years ago. 

Yall, I’m sorry if this seems incentive please be gentle with my ignorance but I want to be realistic. I asked him if the best case scenario is that we fight and continue to fight that it is realistic to think we will be ok for 13 plus years.  He said he could say that a very short time ago advanced kidney cancer would make it 24 months. I was too scared to press him for what that meant in fear of worrying my husband.  Does that mean this fight is a 2 year battle or that 2 years used to be the life expectancy?  Me and my husband are very optimistic people.  However I am more of a realist and he is more of a “head in the sand” type of person.  I’m beating myself up for asking and still wanting an answer L

 

GSRon

Thanks for being here

You are right!  One of my dates should be 2014 and not 2012!  I can’t figure out how to change it.  J

 

DJinnie

My husband starts Votrient on Wednesday.  We are expected to meet with an Oncologist before Wednesday.  Fingers and toes crossed!  Thanks so much for your prayers.

 

Apny

Thanks for your feedback.  I am reading until so much info it is hard to absorb it all.

 

Jan4you

Thanks for the HUG! And I’m sending one right back at you!

 

Foxhd

Thanks you for the advice.  I’ve read some of your posts and you seem like a real positive straight shooter! J

 

Neelcancer

Thank you for putting the word “cured” in your post.  From what I read some of the battle is the battle of the mind!

Cheatinlil,

Please hang in there and remain tough and focused on what you need to do.  I know, as I am going through it now, this can be very difficult and sad.  However, your positive approach, encouragement and love/support is the best thing I could imagine for your husband right now.  I know in my situation I feel better about things when my wife is encouraging.  It can be difficult I know.   I am very new at this and I too am considering the MD Anderson approach.  I have an appointment today and next Thursday with another provider, but I hear really good things about MD Anderson.  I believe that they have to give you the statistical #'s and the worst case scenario so that you do not get over promised.  Take it day by day, step by step and do the best you can to focus on the here and now and what you can do today to maximize your time and success in fighting this dreaded disease.  When you win the battle you will know that it was difficult, but nothing worth fighting for is every easy.  That is how I am looking at it, rightly or wrongly.  It is what keeps me pressing forward!    

Again, I am completely new to this, have a skewed sense of reality because I simiply do not know.  I am trying to remain positive and offer to you a prayer for you and your husband. 

Take Care!

TBuck1971