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Aug 06, 2016 - 3:13 pm
I've been on Nivomulab since January. Love it! No side effects worth talking about (aint I lucky?). Last time they looked, in March the tumours had reduced in size. I'm getting superstitious. No side effects and tumour reduction sounds too good to be true. Not that I'd be complaining or anything. Best thing is, after doing this for so many years I dont even get scanxiety. Not me, not at all. I mean...What have I got to worry about? so no anxiety no anxiety at all
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Joined: Mar 2014
Here's to continuing the no
Here's to continuing the no side effects and size reduction! Hoping the news is all good xo
Joined: May 2015
Easy going is nice
We were in Seattle doing a clinical trial. I was scanned every 7th week. I had zero side effects and reduction with every scan. The lack of sides was the amazing part I guess. The Doctor told us ' If I didn't know better I'd say we were treating you with tap water.'
Enjoy it all Foots!
Bobby
Joined: Jan 2016
Foots
Wishing you continued good news!
Kim
Joined: Oct 2013
Stomper man, this only make
Stomper man, this only make me admire you more!
Glad your drug is being rather kind to you=well deserved!
Just sending you a loving hug with hope for a good scan!
Hugs, Jan
Joined: Jun 2016
Keep up the good work -- !
Stomp, that's great to hear. Keep up the good work, definitely!
Joined: Mar 2016
Hoping for continued
Hoping for continued reduction in tumors!!!!!
Joined: Dec 2014
P.S.
I might have been not entirely truthful about the scanxiety.
Every ache or pain, cough or snivel feels like the cold breath of the grim reaper on my neck as I get closer to the scan.
Still, you've got to laugh, havent you?
Joined: Jan 2016
Ok Fibber McGhee
Nevertheless, I wish you only the best.
I'll be praying for you....as always.
Donna~
Joined: Apr 2016
Right there with you this week
I got all my 4 month scans this Monday, but I got a different kind of anxiety, its called DMV anxiety, its when you have to go to the tag/title office and try to get a title for a 48 year old motorcycle that the title was signed/dated by the previous owner in 1968 and I have no bill of sale. It will be interesting to see if the clerk at the DMV catches that I would have only been 10 years old in 1968 where my signature on the title is.
But seriously, good luck to both of us this week on whats really important.
Joined: Dec 2014
DMV
Second only to an MRI. Whats the bike?
Joined: Apr 2016
It's a........
1968 XLH Harley Sportster, I have 1967 xlch sportster and a 1969 xlh sportster, so I thought it was only fitting to fill the void in years with a 68 model, funny how my wife doesnt see the same need as I do. Good luck this week.
Joined: Feb 2014
Well done!
Can't wait for the good news.
Joined: Jul 2016
Wednesday
I'll be thinking about you on Wednesday. Good luck, Footstomper.
Stub
Joined: Nov 2014
Good luck and waiting for
Good luck and waiting for reduction news!
Joined: Oct 2013
Good Luck
Foots, Best of luck with the scans! I am meeting a new oncologist this week after my move to the sunshine state... Scans not far behind. Positive thoughts headed your way.
Jack
Joined: Oct 2014
Wishing you continued good
Wishing you continued good news. You deserve it.
Forough
Joined: Oct 2013
Me thinks thou dost protest too much!
Hey Stomps....I could read the scanxiety in your post....but everything is going SO well....try not to worry too much. We are all pulling for you - and sending our good thoughts and prayers your way for Wednesday!! You certainly have earned a symptom-free medication that WORKS!! Very hopeful.
Let us know how it goes!!
Hugs
Jojo
Joined: Jun 2016
Praying for a good report
It's the waiting that's awful!
Penitent
Joined: Jun 2016
Praying...
so glad you aren't having side effects! Praying for great news on your scan!
Joined: Nov 2014
Stomps I am
I do not like green dye and scans, I do not like them in a lab, I do not like them in a cab.
Very Seussian of you, Stomps!
- jay.
Joined: Dec 2014
Dammit!
I was aiming for e.e. cummings.
Joined: Jul 2012
Stomps
Will be praying for you on Wed that you get a good report!
Joined: May 2013
Hope the good news continues!
Stomp,
Keep the good news coming!!
Brenda
Joined: Dec 2014
Brenda
Straight back atcha! :-)
Joined: Jun 2016
Thinking..
Thinking of you today!
Joined: Mar 2013
Great News
Happy for you brother, I hope the good news keeps coming your way.
Mark
Joined: Dec 2014
Thanks for the good wishes...
Now I have to wait til Tuesday for the results
Joined: Jul 2016
Wait
Stomper:
I'm with you--this waiting game is for the birds. I get my chest scan today and have my initial meeting with Dr. Chow at the Mayo Clinic tomorrow morning. It has definiately been a long two weeks since the appointment was made. I do hold on to the advice you have given numerous times--"it's not as bad as what your fear makes it out to be". Try to relax--read some poetry or classic literature. You're in my thoughts and prayers!
Stub
Joined: Feb 2015
Here with you Stomps!
Wishing you well and sending good vibes and love!
Joined: Dec 2014
Marosa
Thanks Marosa, I see my onc on Tuesday. I confess I'm getting a little nervous. People on this site have had less than stellar results lately. Anyway: Alea Iacta est!
Joined: Dec 2014
Curates egg
no new lumps.little lump on adrhenalgland has gone. Little mets in lungs have shrunk or remained the same. Big met has increased from 4.8 to 6 cm.
gonna carry on with nivomulab and add radiation on Friday.
so good news but with a kick in the teeth included
Joined: Oct 2013
Something drew me here
Something drew me here tonight and now I know why=YOU!!
Good and not so good news, how do you wrap your mind around all that? Like you have all along.
You are loved, you ARE LOVE and as you can see WE CARE!
Let us send you that loving strength in hope and healing. BTW, healing is not all physical as you know.
I will ALWAYS be here for you my stomper man!!
Hugs, Jan
Joined: Feb 2016
Stomper
Very happy it is working fairly well for you. I pray it keeps working for you. Going to say a prayer for your radiation on Friday. I turned down radiation on my met lung tumor. Guess I am a chicken. lol
Joined: Dec 2014
Tea
May I ask why you turned it down? If you dont want to talk in public send me an email
Joined: Mar 2016
No new lumps. Little lumps
No new lumps. Little lumps gone. Great news Footstomper! Ok one nasty lump left to get rid of with radiation. Will be sending healing thoughts your way.
Joined: Oct 2011
great report
The met didn't necessarily grow. It is inflamed. It's bigger and puts up a bigger fight.
...on it's way out!!!!I'm truely happy my friend.
Joined: Jan 2016
Great news Stomper!!
I'm praying for you that the remaining will succumb very soon and your health will be restored.
Love ya man, you're an inspiration,
Donna~
Joined: Nov 2014
This sounds fantastic to me!
This sounds fantastic to me! Small mets shrinking, and even if one big is present - it can be dealt with! Or perhapsit is just inflamed, as Fox says. Time for a little celebration, seems like you'll have to use your new hip for a looong time :-)
Joined: Mar 2014
That's very good news! Hoping
That's very good news! Hoping the big met is just inflamed, as Fox says.
Joined: Feb 2015
Let's kick that stubborn met's but!
Nobody can do it better Stomps! All in all it's mostly good news. We are as always, cheering for you!
Joined: Oct 2013
Very Positive overall!
Stomps, Sounds good overall the one big one can be dealt with in a number of potential ways. Best wishes for continued success!
Jack
Joined: Dec 2014
The PLAN
I'm going to carry on with Nivomulab, which mostly seems to be doing its job, and they are going to very aggressively zap my big lump (which seeing as its a Metastatic offspring from my original lump, which I named Darth, must be called luke). They are hoping not to damage my lungs or my heart, to which apparently Luke is close. They are hoping to annihilate Luke and they are dreaming that Luke in his despair and crisis will stimulate antibodies from all his little polyps which will then be attacked by the Nivolumab leaving me cancer free.
This is all pretty new and they are working in concert with other oncologists around the world to see if it will work. After my reaction to IL2 and other stuff, they said that I have "What we call quite a biology!" (a joke). Make of that what you will.
Another scan on Wednesday to fix an aim on Luke (a moving target) whilst avoiding my heart (another moving target). We start the treatment on the 29th.
Its all terribly exciting.
Joined: Feb 2014
This approach with Radiation and immunotherapy is cool and new
I've been to a conference about the new uses of sterotactic radiation and it having a more durable effect than simply beyond the zapping. GOOD LUCK!!! I have heard great things about this emerging use of radation.
Joined: Jan 2016
Best wishes Stomper
Been thinking of you and praying for you as well. And here's to a Luke send-off into the wild blue.
Donna~
Joined: Oct 2011
abscopal effect
I was counting on the abscopal effect but my body had other plans. Go get'm stomps. How's the hip?
Joined: Dec 2014
Hip
Itchy! Unless I cough or sneeze at which point the pain literally throws me across the room. Splendid scar tho'!
Joined: Jun 2016
Yikes!
Yikes, Footstomper -- !
Hope when you do that, you are wearing your extra-padded lounge-wear. That's some kind of LOCO-motion
!
Joined: Jun 2014
I'm so sorry to hear about
I'm so sorry to hear about the new met :( You have a great attitude. My prayers are with you! I love the names you gave them...may the force be with you! You are a great encouragement around here. We need you! Keep posting!
Joined: Dec 2014
Dont fret Lil
I aint planning on going nowhere!