Positive focus.

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1
June 9, 2012 - 8:35pm
positive info

Alice, since you asked...... First of all., My heart goes out to everyone on this board. What a sad place to have to make friends. However, the understanding, compassion, and ability to identify with each others life changing process is proof that no one is alone in this battle. Whether renal cell cancer or any other health issue the reality of ones mortality hits home. And hits hard. Some of us have experienced death and dieing as a career. Others have not experienced it at all. For those ,We offer as much support as we can. This journey takes many turns. Most of us have to take the ride and not know where it will lead us. Remaining positive and optimistic is the only active influence we can control. This mind set is not only good for ones well being but maybe more for their loved ones. There is not a single parent who wouldn't give their own life for their child so he or she could grow grow up. The same concept applies. Our families depend on our strength. We are all family here. That's why we post.
The unfortunate history of renal cell cancer is that it has been unbeatable. But now, great progress is being made. If there was no hope, this board would have a different focus. There has been much in the medical journals, newspapers, internet and tv news during this past month regarding the huge strides in defeating this cancer. It is promising.
I for one was not expected to beat this disease. Metastatic disease multi organ involvement left me with a poor prognosis. But science offered an option. Unproven, but promising. A clinical trial. Few agree to being a research rat. Most only want approved therapies. Some of us felt we had little to lose.So we signed on. We now know there have been a few deaths due to respiratory complications. Probably an issue of dose management and having an immune system concentrating on eraticating the tumors..I myself, have had some respiratory issues. But I have also been on the highest dose of MDX-1106 for months. Dosage will be perfected with time.
As a result of this trial, I have experienced exceptional recovery. My oncologist spent some time with me this week. We reviewed my progress and scans. From having 18+ tumors that were identifiable, I am now battling only about 4. The others are GONE! This doesn't mean that I have won the battle. It does mean that I will probably not expire from kidney cancer. Another disease may be around the corner, but we'll deal with that when the time comes. The point is that there is hope for all. Opportunities to participate in ground breaking medicine are available to many. Investigate available clinical trials. They are posted on the internet. Challenge your physician to assist you. There is hope. Don't be afraid of this disease. And don't ignore it. Ones life has already been changed. Stand up and face it head on. Be strong for yourself and for your loved ones. Perhaps ones recovery will be dependent on having fought hard and then being the right candidate when the next big thing comes along.Be your own advocate. Or as many here are, be an advocate for the one you love. God bless you all. FLY. Fox loves you.

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    Well said
    Need I say more?

    Icemantoo
  • Bonngo
    Bonngo Member Posts: 79
    #4
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    Staying positive is so
    Staying positive is so important and vital to recovery! Remember miracles still do happen and they sometimes come in the form of new medicines...glad to hear you have had such great results! Enjoy your vacation...by the way, I live in New Hampshire. :)
  • KJones1969
    KJones1969 Member Posts: 158
    #5
    WOW
    Fox it is a very sad place to meet some people but it is great to read and see and hear what others are going through with their ordeal with cancer. I try really hard to stay positive for my husband as hard as it may be at times. My husbands ordeal has been much shorter than many others on this sight but I can see it in my head and hear Dr. Iqbal on Feb. 18th of this year coming in and telling us he had incurable Stage IV Clear Cell RCC that had metastasized to his lungs. I thought it was the end of the world for him or at least as we know it and sure things have changed some with more doctors visits but for the most everything is the same. I am just a little more protective over him....hehehehe

    He started Votrient in May and we have both been very pleased with the lack of side effects from it. The worst side effect he has experienced so far is severe fatique. He has his first scan since starting it in 2 months and I'm praying we get the results you have from your treatments. Just maybe those spots on his lungs will be gone. :) The first thing we asked about was a clinical trial when talking to the doctor about treatment options. His doctor said there was not a trial right now that would work for my husband so Votrient was it.

    I never knew as the "caregiver" the work involved in finding out information. You are soooo right about being your own advocate because if you don't no one will. I have found lots of information out online and even just from making lots of phone calls. My hubby thinks I talk to a doctor's office every week and sometimes I do but I want him to have the best care possible while fighting this awful disease.

    Good luck on your current and future treatments. Over the last decade the treatment options have increased a lot for Kidney Cancer so let's hope that keeps going in the right direction. :)
  • matchframe
    matchframe Member Posts: 58
    #6
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    Have Fun!
    Have fun on vacation!! Enjoy the ride and be careful!

    Life is for the living!!

    Bill
  • alice124
    alice124 Member Posts: 896 Member
    #7
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    current progress
    Fox - your poor wife!!! While I'm happy to read the progress you've made, I sure would like to hear a clean bill of LUNGS before you take off. I understand Mrs. Fox's worry. I'm a little surprised your doc didn't keep you on the antibiotics until your lungs were totally clear??? I seem to remember that pneumonitis can be one of the nasty side effects of MDX; so concern is valid.

    Just go and have a great time, but--if the cough and respiraton get worse--come home. Your biker friends will understand if you need to cut it short. If you need to do that, just consider it an investment in future vacations.

    To clear lungs and a wonderful vacation!!
  • adobe
    adobe Member Posts: 72
    #8
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    good progress
    Glad to hear the good news!!! Have a great vacation!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #9
    alice124 said:

    current progress
    Fox - your poor wife!!! While I'm happy to read the progress you've made, I sure would like to hear a clean bill of LUNGS before you take off. I understand Mrs. Fox's worry. I'm a little surprised your doc didn't keep you on the antibiotics until your lungs were totally clear??? I seem to remember that pneumonitis can be one of the nasty side effects of MDX; so concern is valid.

    Just go and have a great time, but--if the cough and respiraton get worse--come home. Your biker friends will understand if you need to cut it short. If you need to do that, just consider it an investment in future vacations.

    To clear lungs and a wonderful vacation!!

    lungs
    Alice, I was on a 5 day z-pac for antibiotics. My lungs are 90%+ now. I was able to run my 3 miles this morning at a pretty good clip. So , I think I'm pretty healthy now. I just have to stay that way for next weeks infusion.
  • garym
    garym Member Posts: 1,647
    #10
    foxhd said:

    current progress
    Alice, My wife pulled my cranial stitches today. Probably a 4-5 inch incision. Beginning to look more like Frankenstein every day. Scar here, scar there..... Pathology report is that the melanoma is gone. Basal cell ca, is gone. What more can one ask for? Of course my wife the nurse is continually freaked out over all of this.... No longer on anti biotics... I was able to weight train and run yesterday. Will do it again tomorrow..... I must stay healthy to continue on the MDX trial.... My lungs aren't fully cleared yet and that scares her. Especially since I am climbing on my bike and taking off for the better part of 2 weeks starting early tuesday. I will be camping with friends in New Hampshire and then New York. The temptation to party will be constant. But I'm an old man now. Priority is to stay healthy. And since this is my once a year biker vacation, I'm going. No matter what. life is for living.

    Scars...
    fox,

    Hard to be a real biker without a few scars, I know you wear them proudly, they prove life is for living. Good to hear the lungs have improved and you'll be back on track with the MDX.

    Have a great trip,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #11
    KJones1969 said:

    WOW
    Fox it is a very sad place to meet some people but it is great to read and see and hear what others are going through with their ordeal with cancer. I try really hard to stay positive for my husband as hard as it may be at times. My husbands ordeal has been much shorter than many others on this sight but I can see it in my head and hear Dr. Iqbal on Feb. 18th of this year coming in and telling us he had incurable Stage IV Clear Cell RCC that had metastasized to his lungs. I thought it was the end of the world for him or at least as we know it and sure things have changed some with more doctors visits but for the most everything is the same. I am just a little more protective over him....hehehehe

    He started Votrient in May and we have both been very pleased with the lack of side effects from it. The worst side effect he has experienced so far is severe fatique. He has his first scan since starting it in 2 months and I'm praying we get the results you have from your treatments. Just maybe those spots on his lungs will be gone. :) The first thing we asked about was a clinical trial when talking to the doctor about treatment options. His doctor said there was not a trial right now that would work for my husband so Votrient was it.

    I never knew as the "caregiver" the work involved in finding out information. You are soooo right about being your own advocate because if you don't no one will. I have found lots of information out online and even just from making lots of phone calls. My hubby thinks I talk to a doctor's office every week and sometimes I do but I want him to have the best care possible while fighting this awful disease.

    Good luck on your current and future treatments. Over the last decade the treatment options have increased a lot for Kidney Cancer so let's hope that keeps going in the right direction. :)

    Vacation
    I'll be off first thing in the morning. Bike week here we come! See you all next week. Stay well. Get healthy! Bonngo, see you at the Broken Spoke!
  • littledarlin
    littledarlin Member Posts: 102
    #12
    foxhd said:

    Vacation
    I'll be off first thing in the morning. Bike week here we come! See you all next week. Stay well. Get healthy! Bonngo, see you at the Broken Spoke!

    Riding in the wind..
    Have a great vacation. Freedom is Riding in the wind..

    Littledarlin..

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