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19th infusion

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

No, not my 19th nervous breakdown. That's for rookies. Although I am beginning to think that my tenure in the MDX-1106 study is waning. I think it is safe to say that essentially ALL soft tissue mets are GONE! And there was a **** load of them. Maybe 1 or 2 small hyperdensities which could be anything or nothing. ( I probably swallowed some lego pieces when I was 5).  However, I am having difficulty cleaning out my bones. Last year 2 very painful bone mets healed right up. But now, I continue to have slow growth in a couple mets in my ribs and spine. Even after radiation. One rib has broken and it is constantly clicking and popping. Thankfully it is now painless. I do have another  painful rib(but improving) which shows nothing on my ct scan, so who knows. Anyway, Next scan is in 6 weeks. I've got to think that if the bones keep getting worse, then there will be a change in treatment. Not sure if I become ineligible for mdx due to progression or if just another intervention will take place. Not time to panic yet. I didn't even want to discuss it with my MD as I didn't want to place the thought in her head. I'll admit I expected worse news at my visit but DAMN! I am doing GREAT! (I wrote good but changed it).  Who wouda thunk it?  Hell, my wife had even been practicing grocery shopping for one. She bought a half loaf of bread and a 3 pack of beer! And yes, My sweet doctor gave me a big smile and a hug. Keep the faith Y'all. FLY.

Fox loves you!

DMike's picture
DMike
Posts: 244
Joined: Nov 2011

Hi Fox,

That's GREAT news! (didn't even consider typing good!)  I'm so happy for you. And yeah, I still think you're a badass!

Keep fighting, David

ps  That's an orange bracelet in my photo, courtesy of wonderful Alice. I wear it on all my bike rides. It helps me think of all of you. Thanks Alice!

alice124's picture
alice124
Posts: 894
Joined: Mar 2012

Nice Pic - David!

Limelife50's picture
Limelife50
Posts: 444
Joined: Nov 2011

Glad to hear you are doing great ,i am hoping maybe your oncologist is maybe able to do some type of combo thearapy,it seems the MDX is working great but maybe using another drug that may target the bone mets .I have a quick question for you ,i am a year and a couple months out from surgery but i still at times get these muscle cramps and or spasms around the surgical area and no their is no pain involvement,was told in the past this is part of the healing process  but hmmm sure has been awhile.O ne more questons for all the other members,i notice when i get worn down later in the day my left eye gets uncomfortable and i get this halo effect at night from street lights automobile lights  and so on,thanks hope the beer tasted good Fox

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

Limelife, when you cut your hair or nails there is no issue because they are not innervated. However when you insult, damage, or excise tissue that is innervated, your body tries to pull away and withdraw. As when touching a hot stove with your hand. You yank back hard. Well with any invasive procedure, tissue is cut, reflexes are activated and the response is withdrawl. The result is spasm or cramps. Some cases result in extension or pushing away. Until the body identifies this "insult" as no longer a threat it will cause contraction which is cramp or spasm. The trick is to introduce motion, activity and use of the affected area at an easy intensity until  it gets used to it and becomes "normal". You can't do to much no matter what,( except drugs) as you are healing to reduce the spasms. However, at 1 year like you, you can learn to initiate your muscles with easy activity until you regain good reflexive control.Then things will normalize. Rehab is not "Let's work out hard and it will go away." It's learning to do a little at a time and not stimulating the "withdrawl reflex" Hope that is understandable.

I am also on zometa which is supposed to help the bones. I'm getting it a little less often than most but I'm ok with it. We'll watch for awhile. I'm not going anywhere.

For your last question, I'll bet you are still not back to what you consider your normal self. Fatigue, and physiology is not back to normal. Many things can happen. Refer back to first paragraph.

alice124's picture
alice124
Posts: 894
Joined: Mar 2012

YES! Sounds more like the 19th hole! Couldn't be happier for you Fox. I realize--just dealing with John's shoulder mets--that the medication seems to do less for the bone mets. But as the forerunner and a man of determination, we look for you to lead the way to the next battle once this one is cleaned up. ELF

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

The moment I read the new topic title, 19th Nervous Breakdown came to mind and I intended to use that as my subject line.  Then I saw you got Stoned first!

Good thinking not to raise the topic of continuing in the trial - rather, let sleeping dogs lie.

On the bone mets, as against bisphosphonates, could you maybe get tried out on cabozantinib (brand name Cometriq) which is showing enormous promise? The latest report, a few days ago, from U. Mich. is

http://advancedprostatecancer.net/?p=3588

It's a different urological cancer but they're already speculating about its utility in other disease forms.

 

As Alice just said, "we look for you to lead the way" so just make sure it's in the right direction - it has been so far, so no wonder ELF.

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

Foxy,

It seems like only yesterday when you joined the club and were only talking about the MDX trial.  MAN-O-MAN, LOOK AT YOU NOW!  New tires on the truck and back buying green bananas.  You are our posted child, our shining star, and you have helped and continue to help so many along the way, a true hero in my book.  Its wierd how something so bad can produce so much good.  I can't wait for your first NED.

ELY,

Gary

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

Foxy, further to my post above, I think you'll find some info in the article per link below of interest and I believe Gary may find it worth reading also, for different reasons.

 

http://www.onclive.com/publications/Oncology-live/2012/October-2012/A-Man-of-Many-Battles-Genitourinary-Expert-Spurs-Advances-Amid-Challenges

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

I did like it very much as I believe that in life everything happens for a reason and that everything works together for good.  Sometimes it can be very difficult to imagine good coming from different, but looking back from what may be years later almost always bears this out.

Thanks T,

Gary

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

I'm not one to say on a religious level that things happen for a reason, or it is Gods will. But I still do believe in Karma although

I don't know what that is either.

Do good, get good. Do bad get bad. That I understand.

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

New tires and green bananas. Funny stuff. But howcome no one laughed at my joke about a half loaf of bread and a 3 pack of beer? I thought that was funny.

Gary, I don't really think that I will ever be NED. Just not likely. I think I will be doing this for a long time to come. I've learned from other occaisional posters that this is for the long haul. Besides, I don't want to leave this group and join the "Fat fighters forum" or "Dyslexic are us" boards.

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

 Posted after Tex but didn't appear in the order............ Yep, not ready to push additional treatment plans. It must have been hard for all pioneers or generals to "Stay the course" when things got tough and options presented. At least for awhile, I'm doing nothing new. If I was to be taken off the MDX study, I would want surgery to remove the offensive little buggers as first course of action. As I have said many times, I can heal from anything. Bring it on! Just not yet.

FLY and thanks for the ELF.

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

Love you Alice! thanx!

tacyarts
Posts: 73
Joined: Apr 2012

I'm so happy that you are doing well fox and as usual staying positive which is crucial in the battle. As for me, I am home recooperating from surgury on my leg, I had a prosthetic femor bone inserted and knee and a hip replacement done over the last few weeks but am doing amazing well physically and mentally right now. The cancer in my leg had destroyed 60% of the bone and left me in so much pain that I was ready to scream. I have zero pain right now and am ready to start back on my mdx study on Jan 31 to continue the fight.

alice124's picture
alice124
Posts: 894
Joined: Mar 2012

Great news Tacyarts. Glad to hear the operation was such a success and you were home for the Christmas holiday with your family. Let's hope it gets nothing but better from here on out. . .

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

Also so good to hear that you'll be back on the trial.  You'll need the healing time before resuming but you probably won't have lost much ground meantime.  Has someone managed to keep custom up at the Straycat, tacyartS?

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

Sorry about all the pain and surgery tacycarts. But happy you are well and ready to restart your trial. Great attitude! You deserve to do well. Keep it up.

tacyarts
Posts: 73
Joined: Apr 2012

My wife has managed to keep the restaurant and home and family in line for over 6 months now. I am such a lucky man to have such an able , hard working loving wife.

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

Yes, you are a lucky man to have her and obviously she thinks you're worth it and I'm sure she's right.  Well done her! And well done you - I bet your Family is proud of the way you've handled it all - it must have been unsettling for your kids but they're resilient and will be much re-assured by seeing you coping so well.  Keep it up and have a better 2013 than your 2012.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Mr. Fox man Sir:

I feel stupid saying this, since you are so in touch with the subject but I'm getting Xgeva injectons for my bone mets.  Does that ring any sort of bell for you???? and by the way... Happy New Year.... each one's a blessing!

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

Gordon Charles, Happy New Year! Xgeva is another drug in the category of monoclonal antibodies. It is also for strengthening the bones when bone mets are present. The things we must endure to beat this disease.

one putt
Posts: 72
Joined: Sep 2012

Add me to the Xgeva list. I've been on it since April. However, I'm missing my scheduled shot this week because my calcium level dropped below normal.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

My oncologist has me on 1 tab twice a day and my calcium level seems to be holding.  If you aren't already on it you might want to ask your doc.  Just a thought.

foxhd's picture
foxhd
Posts: 2189
Joined: Oct 2011

I've meant to ask her about adding calcium. (because my wife told me to ask her. but I forgot.) My calcium numbers have remained spot on.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Fox man..... As I tiptoe in and out of this website, I am always taken by your forthright approach to things.  I imagine your personal RCC wonders why it attacked you in the first place.  A VERY formidable adversary are you!  My money is on your cancer cutting it's losses and just going away quietly.

one putt
Posts: 72
Joined: Sep 2012

My low calcium was self-inflicted. I take 1 tab twice daily also. Problem was I was taking it with my thyroid medication. Thyroid meds must be taken at least 4 hours from calcium and prilosec,both of which I am on. I got a little lax with the calcium,which I believe led to my low reading. Doc will be checking it my next bloodwork in 2 weeks.

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