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Cubanito
Cubanito Member Posts: 9

Hi Everyone,

About 4 months ago I was diagnosed with stage IV kidney cancer. Unfortunately for me it has spread to lung and lymph nodes thus it being catorgorized stage IV. I had my left kidney/tumor removed on November 19th, 2015 and just finished my first round of HDIL2 treatment. I will now wait two months then have another cat scan to see if treatment is working if it is then I go back in for another round of HDIL2. If it does not work I guess I just go on some pill probably Sutent etc...

I have never been much of a person that opens up about his feelings but felt the need to reach out to other people that are going through the same thing that I am might help. It has not been easy thats for sure. I have wonderful support system that helps so much and would not be able to have gone this far without them.

Well that's a short summary of my story. Hope everyone has a great day!

Best regards,

Luis

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Comments

  • APny
    APny Member Posts: 1,995 Member
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    I'm very sorry you have to

    I'm very sorry you have to join us but this is a wonderful, supportive place with a vast amount of information and help. So I'm glad you reached out. There are many on here with stage IV kidney cancer so you are definitely not alone. It's great that you have a good support system; that is so important. Wish you the very best results on next CT scan!

  • Bonngo
    Bonngo Member Posts: 79
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    Welcome

    I am so sorry that we have to meet under these circumstances.  

    You will find tremendous support here with this awesome group of folks who, in varying degrees, are all in the same boat.  There will be those who can relate with you more as they may have undergone or are undergoing the same treatments.  

    It's wonderful that you have a great support system at home, but also know that you are not alone in this journey as we are here for you as well.  

    Try to stay positive as we all do, and yes, we like to laugh.

    ~Bonnie

     

  • Tim Wisneski
    Tim Wisneski Member Posts: 17
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    New to this

    Hi Luis,

    I just joined after finding out I have big tumors on each kidney last week. I think im still in shock over this news to tell the truth! I realy dont know anything about this situation, but I hope that the people here can help. 

    How much does the treatment you mentioned cost? No health insurance here for me, looks like we are going to sell off our ranch and all my accumilated big toys, get back to the basics and set my wife up with some sort of a buisness she can manage alone. (worst to worst)

    Regards

    Tim

  • foroughsh
    foroughsh Member Posts: 779 Member
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    Wellcome to the board no one

    Wellcome to the board no one wants to join!

    I was diagnosed 18 months ago, stage 2 and 36 years old! I was shocked and couldn't believe I had in for almost 12 years meaning I had a cancerous tumor in my 2nd decade! It made me feel hopeless, no matter how Healthy life I had or being athlet and spends hous and hours on excercises the result that was the result. I can't reach out either , didn't tell my mama as I thought it would break her depart, didn't tell my family as I thought they would be sad, didn't tell my coworkers because I hated them to feel pity for me. Didn't even cry when my hubby was home just because I didn't want to hurt him  more or meantime wanted to prove him and myself I ciuld handle it

    After a month I found this board, remmember myself crying for an hour when I was reading post and feedbacks,. It posted my first post and got positive, kind , energeric feedbcks from those who were going through the same thing.

    I read success stories and found hope, we have some members who were diagnosed as stage four but now are NED for three years and some with stable mets.

    It took me four,five months to finally open up with my hubby, he moved on as soon I got out of hospital as he deeply believes I am cure so he was shocked when I asked him, sit and listen to my emotions, That night I huged him and cried a lot, told him all my fears, from being a yound dead one to a girl never having the chance to have a baby, I am proud of my self to be finally able to open up, since then I feel more comfortable and we got closer. He read a book about how to cope with cancer and learned a lot from that book, now and then we talk and I tell him all my thoughts and fears , he tells me jokes and tell me stories about our eldery and makes me forget. I never told my mom or tge family or coworkers for the reason I wrote earlier.

    After seven months I found out it's too hard to back on track without a therapist's help. It helped me a lot too. I came back to gym, enjoyed reading about different touristic destintions and researched a lot about the history, culture,architecture,.... Of our next destinatiion so it took my free time in a positive way, I booked a dance class, joined a book reading group, teach my mom how to work with computers, joined some charity groups, made delicious healthy foods,... All these thing keep my mind busy so I dn't have time to waste on negative,hopeless thoughts.hope it can give you a clue.

    Forough

     

     

     

     

     

     

  • hardo718
    hardo718 Member Posts: 853 Member
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    foroughsh said:

    Wellcome to the board no one

    Wellcome to the board no one wants to join!

    I was diagnosed 18 months ago, stage 2 and 36 years old! I was shocked and couldn't believe I had in for almost 12 years meaning I had a cancerous tumor in my 2nd decade! It made me feel hopeless, no matter how Healthy life I had or being athlet and spends hous and hours on excercises the result that was the result. I can't reach out either , didn't tell my mama as I thought it would break her depart, didn't tell my family as I thought they would be sad, didn't tell my coworkers because I hated them to feel pity for me. Didn't even cry when my hubby was home just because I didn't want to hurt him  more or meantime wanted to prove him and myself I ciuld handle it

    After a month I found this board, remmember myself crying for an hour when I was reading post and feedbacks,. It posted my first post and got positive, kind , energeric feedbcks from those who were going through the same thing.

    I read success stories and found hope, we have some members who were diagnosed as stage four but now are NED for three years and some with stable mets.

    It took me four,five months to finally open up with my hubby, he moved on as soon I got out of hospital as he deeply believes I am cure so he was shocked when I asked him, sit and listen to my emotions, That night I huged him and cried a lot, told him all my fears, from being a yound dead one to a girl never having the chance to have a baby, I am proud of my self to be finally able to open up, since then I feel more comfortable and we got closer. He read a book about how to cope with cancer and learned a lot from that book, now and then we talk and I tell him all my thoughts and fears , he tells me jokes and tell me stories about our eldery and makes me forget. I never told my mom or tge family or coworkers for the reason I wrote earlier.

    After seven months I found out it's too hard to back on track without a therapist's help. It helped me a lot too. I came back to gym, enjoyed reading about different touristic destintions and researched a lot about the history, culture,architecture,.... Of our next destinatiion so it took my free time in a positive way, I booked a dance class, joined a book reading group, teach my mom how to work with computers, joined some charity groups, made delicious healthy foods,... All these thing keep my mind busy so I dn't have time to waste on negative,hopeless thoughts.hope it can give you a clue.

    Forough

     

     

     

     

     

     

    Welcome Luis!

    I can only relate in the sense that I too had kidney cancer, but luckily only a stage 1.  Others here will be able to identify with your specifics, so I wanted to reassure you, you came to the right place.  I also have a great support system at home, but I recently have found that since they've never experienced what I have, it's helpful to be on this forum and associate with those that have.

    I'll keep you in my prayers and hope that your next scan will prove your efforts beneficial in beating the beast.

    Best wishes, keep us updated on your progress.

    Donna~

  • Pandabear1011
    Pandabear1011 Member Posts: 123 Member
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    Hi Luis...

    Welcome...Although I can't relate to being Stage 4 (I am Stage 1 ). I will send positive vibes your way that the HDIL2 works wonders and you become a complete responder.

  • foxhd
    foxhd Member Posts: 3,181 Member
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    Hi Luis...

    Welcome...Although I can't relate to being Stage 4 (I am Stage 1 ). I will send positive vibes your way that the HDIL2 works wonders and you become a complete responder.

    kidney ca.

    Luis, I'm stage 4. Almost 5 years. Not always easy. But...

    We are LIVING with cancer. Not dying from it. Just stay tough. It's a life changing event, but we all are doing it.

  • mrou50
    mrou50 Member Posts: 389 Member
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    Luis

    Sorry to meet you this way your situation is much like mine, this is a great site for support and to share with people who know what you are going through thre is no judgements here either.  Feel free to share with us as we will with you.  This is a frustrating journey sometimes but as Stuart Scott said, no matter what happens cancer never wins.  Keep up the fight and stay in contact.

     

    Mark

  • marosa
    marosa Member Posts: 334 Member
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    mrou50 said:

    Luis

    Sorry to meet you this way your situation is much like mine, this is a great site for support and to share with people who know what you are going through thre is no judgements here either.  Feel free to share with us as we will with you.  This is a frustrating journey sometimes but as Stuart Scott said, no matter what happens cancer never wins.  Keep up the fight and stay in contact.

     

    Mark

    Hola Luis!

    I was going to attempt to write to you about the emotional part of living with cancer since I lack the knowledge many of our members here have to offer you anything more  .  But after reading what Forough wrote, I feel she expressed so well how many of us feel and how we go about dealing with it and living our life. I felt totally identified with her thoughts and feelings so I subscribe to her writings!

    Sorry to have to welcome you to this board but having said this, I can't put into words how good it has been for me to be a part of this family. 

    Stay positive, let us know how you are doing. I hope your next check-up shows improvement with the treatments.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    foxhd said:

    kidney ca.

    Luis, I'm stage 4. Almost 5 years. Not always easy. But...

    We are LIVING with cancer. Not dying from it. Just stay tough. It's a life changing event, but we all are doing it.

    Fox has got it right. Watch

    Fox has got it right. Watch this guy, occasionally pearls of wisdom come pouring out. The thing is, this is a new reality. Ive been stage 4 since May 13 2013, & I aint dead yet. Thinkikng about it, theres nothing scarey now that wasnt there before.

  • Positive_Mental_Attitude
    Options
    Luis, sorry you had to join

    Luis, sorry you had to join us here.  As others have said, many people LIVE with cancer.  Like you and a lot of other people, I have a hard time sharing my feeelings, but after my diagnosis in 2014, I got better at it.  I was only stage I, and is hope I have beat cancer for good, but the whole episode was a wake up call for me about a lot of things in life, like loving more, hating less, laughing more and being angry less.  Stuff that used to bother me does not bother me any more.  It's great that you have a good support system.  You will like it here--I find this place very comforting.

  • Cubanito
    Cubanito Member Posts: 9
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    New to this

    Hi Luis,

    I just joined after finding out I have big tumors on each kidney last week. I think im still in shock over this news to tell the truth! I realy dont know anything about this situation, but I hope that the people here can help. 

    How much does the treatment you mentioned cost? No health insurance here for me, looks like we are going to sell off our ranch and all my accumilated big toys, get back to the basics and set my wife up with some sort of a buisness she can manage alone. (worst to worst)

    Regards

    Tim

    Hi Tim, 
    Sorry to hear about

    Hi Tim, 

    Sorry to hear about your diagnosis. It has been about 4 months since I was diagnosed and can honestly say I am still in shock. I am not sure what the cost of the HDIL2 treatment is since I have insurance through work and most I would pay out of pocket will be $5,000.00. I am sure it is not cheap since you have to be in ICU for 5 days home for 9 days then back to ICU for another 5 days.Needless to say I am sure it will not be cheap.

    My Surgery to remove tumor and biopsy of the lymph node came out to over $120,000.00 of which I only have to pay $1,200.00. I really dont know what I would have done if I didnt have insurance. 

    I wish you the best of luck and will add you to my prayers. 

    Regards,

    Luis 

  • Cubanito
    Cubanito Member Posts: 9
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    Hi Luis...

    Welcome...Although I can't relate to being Stage 4 (I am Stage 1 ). I will send positive vibes your way that the HDIL2 works wonders and you become a complete responder.

    Thanks PandaBear 

    Thanks PandaBear Cool

  • Cubanito
    Cubanito Member Posts: 9
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    foxhd said:

    kidney ca.

    Luis, I'm stage 4. Almost 5 years. Not always easy. But...

    We are LIVING with cancer. Not dying from it. Just stay tough. It's a life changing event, but we all are doing it.

    Thank you sir! 5 years stage

    Thank you sir! 5 years stage 4 is exaclty the kind of news I like to see. I plan of fighting this evil disease to the end.

  • Cubanito
    Cubanito Member Posts: 9
    Options

    Fox has got it right. Watch

    Fox has got it right. Watch this guy, occasionally pearls of wisdom come pouring out. The thing is, this is a new reality. Ive been stage 4 since May 13 2013, & I aint dead yet. Thinkikng about it, theres nothing scarey now that wasnt there before.

    Thanks Footstomper. I

    Thanks Footstomper. I appreciate all the responses I have received. I guess when I heard stage 4 my first thought was wow how much time do I have and being stage 4 I thought worse case scenario. I try my best to not go to the dark places and for the most part I do a good job but at times it sneeks up on you and well it is what it is. 

  • foxhd
    foxhd Member Posts: 3,181 Member
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    Luis, sorry you had to join

    Luis, sorry you had to join us here.  As others have said, many people LIVE with cancer.  Like you and a lot of other people, I have a hard time sharing my feeelings, but after my diagnosis in 2014, I got better at it.  I was only stage I, and is hope I have beat cancer for good, but the whole episode was a wake up call for me about a lot of things in life, like loving more, hating less, laughing more and being angry less.  Stuff that used to bother me does not bother me any more.  It's great that you have a good support system.  You will like it here--I find this place very comforting.

    The bad news

    of IL-2 is the cost. I'm lucky to have had my insurance because my treatments came in at about $300,000 per week! I don't know what they really paid, but it had to be expensive.

  • Dutch1
    Dutch1 Member Posts: 152
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    Hi, Luis;
    I've got three

    Hi, Luis;

    I've got three years in at Stage 4 and I'm doing pretty well.  Give the doctors a chance to see what they can do for you.  There's room for some optimism.

    Best of wishes,

     

    Dutch

  • Cubanito
    Cubanito Member Posts: 9
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    foxhd said:

    The bad news

    of IL-2 is the cost. I'm lucky to have had my insurance because my treatments came in at about $300,000 per week! I don't know what they really paid, but it had to be expensive.

    Fox did you also do IL2

    Fox did you also do IL2 treatment? If so how did it go for you?  I have gone one round 2 cycles. First cycle I received 10 of the 14 doses. Second Cycle only 4 and I checked myself out. I felt like the room was closing in on me and with missing doses I let it get the best of me and checked ouy, So out of a possible 28 doses I received 14. I guess the not knowing if its working was the worse part for me that and being strapped in with all the monitors etc... I am hoping I get good news in 2 months and will be able to do another round of IL2. From all the reading I have done it seems like it's the only treatment that has shown to actually cure some patients, granted the percentages aint all that great but hey cant blame a guy for dreaming he will be one of the lucky ones LOL. 

  • Cubanito
    Cubanito Member Posts: 9
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    Dutch1 said:

    Hi, Luis;
    I've got three

    Hi, Luis;

    I've got three years in at Stage 4 and I'm doing pretty well.  Give the doctors a chance to see what they can do for you.  There's room for some optimism.

    Best of wishes,

     

    Dutch

    Thanks Dutch. I actually have

    Thanks Dutch. I actually have a very good Doctor that I like a lot. Gzood to hear you have 3 years and counting , that is exaclty the kind of stuff I like to read! 

  • Cubanito
    Cubanito Member Posts: 9
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    marosa said:

    Hola Luis!

    I was going to attempt to write to you about the emotional part of living with cancer since I lack the knowledge many of our members here have to offer you anything more  .  But after reading what Forough wrote, I feel she expressed so well how many of us feel and how we go about dealing with it and living our life. I felt totally identified with her thoughts and feelings so I subscribe to her writings!

    Sorry to have to welcome you to this board but having said this, I can't put into words how good it has been for me to be a part of this family. 

    Stay positive, let us know how you are doing. I hope your next check-up shows improvement with the treatments.

    Gracias Marosa :) 

    Gracias Marosa :)