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  • Frank302
    Frank302 Member Posts: 71
    #22
    Billy's Wife said:

    Hi John's Son.  This is my

    Hi John's Son.  This is my first time posting on this site.  Your story inspired me to share.  I am reluctant because I do not want to add to your pain.  My husband sounds very much like your father.  He too worked in constuction and was about 5'8 though in good times he weighed closer to 195. When he was diagnosed he was 52 years old.  He too had an oversight in the beginning of his journey.  He had a CT scan because of a kidney stone and was not told that the other kidney, the one without the stone, had a quarter sized tumor in it.  He discovered that two years later after working with a jack hammer and having blood in his urine.  We thought the jack hammer jarred the tumor causing it to bleed.  The stone happened in 2002, his kidney was removed in 2004.  At the time there was no metastesis so no further treatment.  Then in 2008 a large tumor was found in his iliac crest.  For the next almost five years he fought it with all he had.  After the iliac crest was radiated it came back to be radiated two more times. In order to have it radiated the third time he under went a hip replacement first.  He had Interleukin 2 treatment for two weeks in the hospital.  He had his skull radiated once then later had the tumor removed from his skull surgically. He had radiation done to one lung.  Then he had a plural effusion and had to have fluid removed from his lungs like your Dad probably did. He took sutent for about four months.  He was extremely fatigued and had to have blood transfusions.  In July 2012 we traveled to India where he was the first patient to undergo a clinical trial done by doctors there under the name of Munogenics. If you google munogenics you can learn about it.  We found that the transfusions they gave him in India made him stronger but his disease was just too advanced.  After we returned  he had stereo tactic radiation to his brain for the brain mets discovered while in India.  He was put on Keppra to reduce brain swelling.He also had thrush but then he developed a tumor on the gums of his mouth also. If I believed what I read about his prognosis he should have only had two years after the metastasis.  He had almost five years.  We think it was sheer will that kept him with us that long.  My husband was still driving to the candy store to play his lottery tickets about six weeks prior to his passing.  He only spent 11 days in a Hospice because he truly believed he would win the battle and he fought like a winner does.  He made everyone who knew him proud especially our five kids and two grandkids.  We lost him on Dec. 16, 2012. he was 60 years old.  I will keep you and your family in my thoughts and prayers. We hope your road and your Dad's  is easier that his was.  I hope you feel less alone.  I hope my story hasn't upset you further.  Everyone's journey is different and I wish you all the best.   

    John's Son and Billy's Wife

    The bravery and unending willingness to fight in stories like these make me proud to be a member of the human race.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #23
    Frank302 said:

    John's Son and Billy's Wife

    The bravery and unending willingness to fight in stories like these make me proud to be a member of the human race.

    I have said this before....I

    I have said this before....I am humbled by the fighters who have told their stories on this site. I am moved by their journey that they have travelled, with courage and grace.

    God bless.

    Jojo

  • Billy's Wife
    Billy's Wife Member Posts: 52
    #24
    Jojo61 said:

    I have said this before....I

    I have said this before....I am humbled by the fighters who have told their stories on this site. I am moved by their journey that they have travelled, with courage and grace.

    God bless.

    Jojo

    Thank you Jojo and Frank for

    Thank you Jojo and Frank for your kind words.  Since reviewing this sight I will be praying for all of you! 

    Arleen -- Billy's wife

  • johns son
    johns son Member Posts: 12
    #25
    Billy's Wife said:

    Thank you Jojo and Frank for

    Thank you Jojo and Frank for your kind words.  Since reviewing this sight I will be praying for all of you! 

    Arleen -- Billy's wife

    Rough weekend

    We just got home from the hospital, Dad had a fever and became quite lethargic  and extremley weak. The good news he is home resting and doing better. Not sure if it was from a thrush infection, or sutent side effects. They broke the fever and plenty of saline, he was dehydrated. We meet with onycologist Tuesday. lots of questions, after  doing tons or research on these sites, I feel like we are learning so much. They also gave him levaquin for infection. Our main goal now is one more cycle of sutent and the big full body scan. One day at a time. Iwant to personally thank each and every one of you. God bless you all, stay strong and hopeful.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #26
    johns son said:

    Rough weekend

    We just got home from the hospital, Dad had a fever and became quite lethargic  and extremley weak. The good news he is home resting and doing better. Not sure if it was from a thrush infection, or sutent side effects. They broke the fever and plenty of saline, he was dehydrated. We meet with onycologist Tuesday. lots of questions, after  doing tons or research on these sites, I feel like we are learning so much. They also gave him levaquin for infection. Our main goal now is one more cycle of sutent and the big full body scan. One day at a time. Iwant to personally thank each and every one of you. God bless you all, stay strong and hopeful.

    Well we are all thinking of

    Well we are all thinking of you and your family. Hoping for good news on Tuesday. As some of the members here can attest to the miracle of these drugs - we are hoping they have a wonderful effett for your father's health as well.

    Hugs,

    Jojo

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #27
    johns son said:

    Rough weekend

    We just got home from the hospital, Dad had a fever and became quite lethargic  and extremley weak. The good news he is home resting and doing better. Not sure if it was from a thrush infection, or sutent side effects. They broke the fever and plenty of saline, he was dehydrated. We meet with onycologist Tuesday. lots of questions, after  doing tons or research on these sites, I feel like we are learning so much. They also gave him levaquin for infection. Our main goal now is one more cycle of sutent and the big full body scan. One day at a time. Iwant to personally thank each and every one of you. God bless you all, stay strong and hopeful.

    thinking of you

    Johns son:  I have been thinking about you and your father and praying for his recovery.  I am so sorry that he has this terrible disease, and I just cannot fathom that he wasn't informed earlier about his condition.  I think your father's attitude is fantastic.  He is right that he had two years of a certain level of peace of mind because of what he didn't know. 

    My husband was diagnosed February 2012 with Stage 4 Clear cell, mets to bones.  Because of the mets to multiple areas in his bones, they did not want to remove his kidney.  He was started on targeted therapy.  He was given Affinitor and the bone mets shrunk.  We went to a different medical center in order to get his kidney tumor removed.   He currently takes Inlyta and has no evidence of metabolic activity.  So, it's almost been 2 years since being diagnosed at Stage 4.  He did have some cyberknife radiation to his spine.  Twice in fact.  And he had his scapula and hip get radiation treatments.  He's doing pretty well.  Still likes to work parttime.  I would say life has changed drastically, because he was a very active physical guy, but life is still enjoyable to him.

    Regarding your question about being tired.  Yes, fatigue is a major complaint.  I read an article that said 60% of cancer patients #1 complaint is fatigue.  I have asked the docs if it is from the medicine or the cancer.  They said both.  The radiation therapy also made him more tired for a couple of weeks afterwards.  However, there are members on this site that did not feel any side effects post radiation therapy.  Your dad has been through so much with the lung problem and the radiation and being in the hospital, that it is no wonder that he isn't just exhausted. 

    We got referred to a oncology symptom specialist.  She prescribed Ritalin to help my husband be more alert.  It has worked wonders in helping him enjoy life more.  He also was given a drug called Megace that he takes to increase his appetite.  The Inlyta makes him so nauseated that he doesn't feel like eating.  The Megace has helped that problem too, and he has stopped losing weight.  We have learned from our son how to make really great tasting calorie ladden smoothies.  Perhaps you can experiment in the kitchen and create something that he will enjoy.

    I'm hoping that the Sutent will work well for your father.  Some members here have had great success with it. 

    Glad to hear that your father is home now.  It's better to be home to get the rest he needs to get well. 

    The other thing I wanted to tell you is that some Stage 4 patients do not have their kidney tumors removed, or they have to wait a bit in order to have them removed.  In your dad's case it sounds like other things needed to happen first.  And he needs to be in pretty good health to have the kidney surgery.  In my husbands case he waited one year to get his kidney removed.  Their reasoning was that they wanted to find a targeted therapy that was working on the mets before they took time-out to remove the kidney tumor.  That was their thinking.  I do know they have to stop the medicine a couple weeks before surgery and then start again weeks after surgery. 

    The things I've shared with you is just our personal experience.  I am in no way a medical professional.  I have learned an extraordinary amount from reading and participating on this site.  Great people here with a vast amount of knowledge and experience.

    I hope your appointment goes well and that your father continues to feel better.  He is lucky to have you at his side.

  • johns son
    johns son Member Posts: 12
    #28
    a_oaklee said:

    thinking of you

    Johns son:  I have been thinking about you and your father and praying for his recovery.  I am so sorry that he has this terrible disease, and I just cannot fathom that he wasn't informed earlier about his condition.  I think your father's attitude is fantastic.  He is right that he had two years of a certain level of peace of mind because of what he didn't know. 

    My husband was diagnosed February 2012 with Stage 4 Clear cell, mets to bones.  Because of the mets to multiple areas in his bones, they did not want to remove his kidney.  He was started on targeted therapy.  He was given Affinitor and the bone mets shrunk.  We went to a different medical center in order to get his kidney tumor removed.   He currently takes Inlyta and has no evidence of metabolic activity.  So, it's almost been 2 years since being diagnosed at Stage 4.  He did have some cyberknife radiation to his spine.  Twice in fact.  And he had his scapula and hip get radiation treatments.  He's doing pretty well.  Still likes to work parttime.  I would say life has changed drastically, because he was a very active physical guy, but life is still enjoyable to him.

    Regarding your question about being tired.  Yes, fatigue is a major complaint.  I read an article that said 60% of cancer patients #1 complaint is fatigue.  I have asked the docs if it is from the medicine or the cancer.  They said both.  The radiation therapy also made him more tired for a couple of weeks afterwards.  However, there are members on this site that did not feel any side effects post radiation therapy.  Your dad has been through so much with the lung problem and the radiation and being in the hospital, that it is no wonder that he isn't just exhausted. 

    We got referred to a oncology symptom specialist.  She prescribed Ritalin to help my husband be more alert.  It has worked wonders in helping him enjoy life more.  He also was given a drug called Megace that he takes to increase his appetite.  The Inlyta makes him so nauseated that he doesn't feel like eating.  The Megace has helped that problem too, and he has stopped losing weight.  We have learned from our son how to make really great tasting calorie ladden smoothies.  Perhaps you can experiment in the kitchen and create something that he will enjoy.

    I'm hoping that the Sutent will work well for your father.  Some members here have had great success with it. 

    Glad to hear that your father is home now.  It's better to be home to get the rest he needs to get well. 

    The other thing I wanted to tell you is that some Stage 4 patients do not have their kidney tumors removed, or they have to wait a bit in order to have them removed.  In your dad's case it sounds like other things needed to happen first.  And he needs to be in pretty good health to have the kidney surgery.  In my husbands case he waited one year to get his kidney removed.  Their reasoning was that they wanted to find a targeted therapy that was working on the mets before they took time-out to remove the kidney tumor.  That was their thinking.  I do know they have to stop the medicine a couple weeks before surgery and then start again weeks after surgery. 

    The things I've shared with you is just our personal experience.  I am in no way a medical professional.  I have learned an extraordinary amount from reading and participating on this site.  Great people here with a vast amount of knowledge and experience.

    I hope your appointment goes well and that your father continues to feel better.  He is lucky to have you at his side.

    That was a wonderful story.

    a_oaklee, thank you for sharing. I am learning so much from  all of you. I joined smartpatients.com, another excellent source of vital information. My dad has some tremors with left arm, he was pescribed potasium and another supplement  and he is having his thyroid checked. He is back on his 3 Rd cycle of Sutent. He started having a drymouth, so he is drinking more. His fever broke and he is staying hydrated. He seems to be  quite a bit more alert, watching more Tv and having longer conversations. His blood pressure is very stable, his heart rate is a bit elavated  90-110 Bpm. His blood sugar has been quite low,  he is a Type 2 Diabetic. Thank you all for all of your input.  John

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