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1year completion

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Well here it is. I get my 18th MDX infusion tomorrow. It is now a year of treatment. Can't believe it. I would have never thought I would still be here if you asked me in Dec. 2011. Response has been incredible. Soft tissue tumors are essentially GONE! And there were plenty of them. A couple of painful spine and hip mets also gone. Unfortunately, this summer I developed new mets in my spine and rib which didn't go away with the medication. I had radiation to them and pain is minimal. We will find out their status in 3 weeks when my next scan comes up.
I also had evidence of another new rib met at that last scan. This one has been extremely painful. The pain began right after my infusion of MDX and zometa. Pain was worse than pain that first sent me to the hospital and even after nephrectomy. It began to resolve after about a week. At this point it is constant but low grade. My infusions must have attacked the tumor viciously. Perhaps it will be gone by next infusion. Or, more radiation may be given. Which ever the case, bring it on.
It seems to me that the bone mets are more resistant to the MDX. Also seems strange that while all other tumors have gone away, the cancer has managed to find the bones as a good residence. I worry that it will be determined that I no longer respond to the MDX and it will be stopped. I don't want that to happen. I still have great faith in it. So tomorrow will be an uneventful treatment with only blood work as an indicator of my progress. I do wonder if I will develope the intense pain again. This will be interesting. I've recieved the zometa at 6 week intervals and will ask about getting it at 3-4 week intervals. Also, my thyroid tests are never ready for review when the other blood work is ready. I will follow up on that as I demonstrate fatigue, dry skin and feeling cold. Unlike me. Also,
I have not been able to exercise since this June ( due to pain), and I don't want to break any bones. Especially in my spine. That could screw me up for the long term. Can't wait to lift and run again. This "Chronic" disease is still challenging. Fortunately, I should have many years to master all the changes.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Fox,

Your story continues to be one of great hope and inspiration. Everyone who comes here is drawn to you and we have all learned so much from your experience and attitude. When the chips were down you refused to let them stamp an expiration date on your ticket, instead you found a way to do more than simply survive, you thrive. I consider you a hero and I am very proud to be one of many friends, YOU ROCK!!!

Fox loves us and we love him,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ever the bon mot Gary! Nothing needs to be added to what you've said.

So, a question instead. I wondered about increasing the frequency of the Zometa but I also wonder whether, if it isn't doing the whole job, Xgeva might be worth trying instead, although I gather it's hugely more expensive than Zometa. in view of the high stakes involved, might it be worth thinking about?

Sorry to hear about the training but I admire your solid common sense - discretion the better part of valour and we want to remain as intact as possible for the long haul.

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

Hi Fox,
I'm so happy for you and the good news and results you continue to have. You are a real inspiration to me. Seeing you fight the good fight, and kick cancer's ass, is very inspiring to me and I'm sure many others here.

The entire forum is inspiring. Iceman at 10 years, his neighbor at 17 years, Gary at 3 years and the many, many others who share their stories. All of you have inspired me so much!

It's nice to know your one year anniversary is here. I have my one year surgery anniversary on Thursday, 12/6/12. I plan to celebrate! I hope you celebrate yours too! Keep on fighting the good fight. We're all with you. I wish you the best on your upcoming scan and other tests.
--David

angec's picture
angec
Posts: 626
Joined: Mar 2012

Don't worry Fox.. you are doing great! I don't think after 18 they will stop the infusions at all. It is just one thing to worry you, but don't let it consume you. I did read somewhere that the side affects of Zometa were in fact bone pain as it works to strengthen the bones. It seems to be the same issue as those meds they give people with osteo arthritis. It helps strengthen the bones but cause alot of pain as well. I wonder if they might know this when you go in. Keep on trucking, I think you have a good handle on this "chronic" disease. sending hugs your way!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

My dear Fox, you know how I feel. You are my lighthouse in this terrible storm. I totally understand the fear of being booted from the trial and in my heart and soul, I don't think that will happen. Bone mets are a totally different breed, aren't they? Seems like the MDX is keeping everything else in check, so why not just add something to help it zap the bony suckers? Dr. Paula has spoken!!! I'm so glad your pain has subsided. That can only mean something good, right?
I get my total blood results about 4 hours after my labs. I'm still there because I can't get my infusion until they check my kidney and liver function. But come to think of it, I don't think they check my thyroid on a regular basis. That's hard to believe considering how much blood they draw from me. Something like 10 or 12 big vials which they fill 20 little vials with. (Probably why I am battling anemia!)
And clearly MPDL3280A is NOT the same as MDX or BMS, since it has yet to be named and dosage seems to be different. My trial is 1b, so it's got a ways to go... Thanks for hanging in there with me!

My best hopes and prayers are being sent your way. Love from down South!

XO Paula

angec's picture
angec
Posts: 626
Joined: Mar 2012

Just one thing the doc mentioned over at Sloans. He said my mom might be having breathing issues because she may be anemic. That makes sense since she is very pale. The tumors use up alot of blood and therefore it causes anemia. Has anyone heard of this? So that with all the blood they take = fatigue!

Paula, hope you are feeling well. Are you there now or did you leave already? I thought you went in last week for your infusion? Hugs!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Hey Angela! I have been home since last Friday. This go round has been the best so far...a bit tired, but overall feeling so much better than the previous two rounds. Third time seems to be a charm! Next trip to Nashville seems right around the corner...December 20-21! Three weeks flies sometimes (and sometimes it doesn't!) Being anemic will certainly make you short of breath. Been there, done that. But are the tumors the real cause of anemia?

So good to talk to you.

Love, Paula

angec's picture
angec
Posts: 626
Joined: Mar 2012

Sorry Paula, I guess I am a bit behind, glad you are home though and all went much better this time. I am so happy and relieved for you! We're you out of breath with the anemia upon exertion or all the time? I am going to ask the Doctor to do mom's blood to check for that. I would have hoped he would have noticed it. One thing I know for sure lately. It seems that each doctor she goes to no one has a definitive answer for her breathing. The lung doctor says it is the cancer, the onc says it is the heart or anemia, the heart doctor says it is the lungs. All a crazy circle and yet nothing to treat it, it is time to focus more on that and put my foot down for answers. Mom just had an echo done and so far the woman said all looked well so the heart may be out of the equation. Now going to pinpoint the anemia aspect of it. Did you take iron for it?

Keep on doing well Paula, we are all rooting for you! You will be the female version of Fox and John. Ps...did you hear the latest about John? It is quite funny, you have to read about it if you haven't done so already on Alice's post about "the new name for MDX being Nivolumab" or something like that. Xxoo Hugs!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Paula - So glad to have you back; you've been missed. Your protocol sounds identical to John's with bloodwork, shortly followed by lab results and then infusion. His TSH (thyroid stimulating hormone) is a normal part of his blood panel.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Wish I could say something new and original, but don't think there's anything left. You're everything everyone has said, and such a leader on this Board. It's hard to believe it's been a year.

Not only do we continue to be amazed by your progress but by your attitude. You don't know how often I go back and read your posts for pick-me-ups. You're the complete package Fox, and we love you for it!

Whatever your next challenge, we're all your side of the field. Know that always.

adman's picture
adman
Posts: 267
Joined: Jul 2012

Sending you congrats and continued blessings and good luck for the future.
Thank you for all of your support.

God Bless!!

~M

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I appreciate the continued support from everyone. I wouldn't typically bare my soul to so many people. As a health care professional, I am an extrovert and very personable. A skill I learned from Dale Carneggie when I was about 20. In my private life, I am amazingly introverted. I can happily go for days not talking to anyone. I was the kind of kid that you could put in a corner with nothing to do yet I could entertain myself for hours on end. No not that way. I learned that at about 13. OK, maybe ten.(anyone familiar with Dan Hicks and his Hot Licks? He has a song about a kid living alone on a deserted island. He "entertains" himself all day long until he is rescued and put in an institution.) I've said many times, that when I do die, I want people to say, "Who?" No memorials for me. Certainly not on this board since I'll outlive everyone here. But anyway,....
I forgot to mention a couple things from this original post. One, my radiated rib has probably broke. Clicks and pops but with no pain anymore. I wonder if it will heal? Oh well. Second, my left lung demonstrated the "ground glass" appearance on my last scan. Atypical for mets but could be some kind of infection. At least I've got several more weeks before the next scan and it can clear up. One last thing is that all my blood work comes back perfect. My doctor laughed at me recently because my blood work is so good. I'll just have to follow up on my thyroid.........And life goes on!

BDS's picture
BDS
Posts: 101
Joined: Aug 2012

An anniversary allows one to look forward to one’s dreams, ambitions and goals. Happy Anniversary Fox and may you have many, many more to come. Please keep us posted. - BDS

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

HAPPY ANNIVERSARY! HAPPY ANNIVERSARY! HAPPY ANNIVERSARY! HAAAAPPY ANNIVERSARY!!!

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I guess I should add that although it is a year of my MDX, now known as nivolumab, it is 21 months since diagnosis and nephrectomy.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the reminder David - it's just occurred to me that today is the first anniversary of my first op (nephrectomy) mark yours with some fun tomorrow - I'm going to the GP for bloodwork!

Fox, at what point did you begin to be told that you were on borrowed time?

icemantoo's picture
icemantoo
Posts: 1593
Joined: Jan 2010

fox,

Even though your journey has been shorter than mine, yours has been so much more difficult and for that I can not help, but to look up to you for inspiration.

Icemantoo

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Tex that was October 2011.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I think the cumalative(sp?) story I present sounds difficult. I honestly think I have had it very easy. I am fortunate. Lucky indeed. I do believe it is Karma. Even though I admit I don't really know what it is. I only know that it doesn't work if you don't share it. I am proud of my 35 years as a physical therapist. I know it counts for something. You have given me an idea for a new thread. Thanks.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Another update. First my thyroid is fine. Today is 7 days from my last infusion. I went into my visit feeling really good. Most pain was gone. I told the Doc. that I really needed to get back to my exercise because I need it and miss it. I told her that it is my responsibility to stay as fit and strong as I can so that she has something good to work with as she continues to save my life. She couldn't disagree but is concerned that I would push myself too much and hurt myself. I told her I know a good therapist and I will follow his advice. (always good for a laugh.) Anyway, the next morning I did a little ex. I basically went through the motions of my preferred routines with very low resistance. Then went for a mile jog. More of a shuffle and a walk, and a shuffle and a walk. I DON"'T want to hurt myself. It felt good. Promising. So, I did it again the next day. And the next. Well, this morning I was already able to do my normal "healthy" workout at about 2/3's my normal resistance and intensity. Then 2 mile jog at decent pace! It's almost as if I had only missed a week or two of workouts! (I look back and realize that I missed almost 7 months of training.) I have got to tell you that I feel as though I am having a major breakthrough in my recovery. I am feeling SUPER!!!!!!!!. Once again my next scan on Dec. 21st is going to be an important one. I am ready to put some $ on the fact that it will be my best one since spring. Sure hope that I'm not wrong and I would caution anyone else not to be so optimistic. But, I haven't felt this good in a long time. I am pumped. I love you guys!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I wouldn't bet against you on that regardless of what the Vegas odds might be, but I'd be happy to put my money down on top of yours. The land of NED is not far from your reach and I can't wait for the party when you get there!! Rock on!!

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

Fantastic news Fox! I know how important exercise is to me both physically and mentally. I still think you're a badass!
--David

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Dave, I like my endorphins! I remember my first runners high as I crested a hill about 30 years ago. I still get it after playing a decent round of golf. But I have been missing my workouts and hope I can continue. I gotta go find that hill.

Gary, I think you could double your $.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

You are my role model, my mentor. We will both be NED!!! I'd put money on it!

I am alive
Posts: 224
Joined: Jul 2012

Happy anniversary! Happy "back to exercise!" Happy "feeling great again!" Fox, you light the way. Been down the rabbit hole and back again to tell us about it. I came to this board last summer to get a handle on what was in store. (It's the black Irish in me.) No good doctor says "ok, here's how it's going to play out." Instead I found genuine real life heroes like you, and so many others, who show how to live with this thing and wrestle it to the ground. You are a joy to know. Continued good health!

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