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Interleukin 2 here I come!

NanaLou
Posts: 69
Joined: Oct 2011

Well on my last scan I was stable. No growth and no shrink. So I have gone through all the test to qualify for interleukin(Stress, lung, MRI of the brain) and past. I will go in the Hospital on the 20th of September for my first round. I am looking forward to having this and also getting it over with. Any tips are greatly appreciated. My Dr. said we will not do a scan until December. Did everyone else wait two month after to have there scan done?

Nancy

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

That's absolutely wonderful, Nancy!!  It sounds as though you'll soon be swelling the numbers of total responders.  It's very good news for people like David.  [Actually good news to me, too, being another mostly sarcomatoid case.]

You are quite exceptional,  I should think, with an 11 cm primary and mets, 95% sarcomatoid, with some rhabdoid features, from original clear cell histology.  That's a stupendous recovery - a great tribute both to the doctors and to you.

That Daughter of yours will be getting a lot bigger now and it's great that her Mum will be able to watch her grow up and make her way in life.

Mikeyswife
Posts: 31
Joined: Mar 2013

Awesome!  So glad to hear the good news.  Here's to the next round and complete response!

Karen

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

I think it's "Tough broads rule." Did you ever play football? Pity your opposition. How many sessions of IL2 can you get? I do know that if anything remains it responds much better to other treatments. Stories like yours remind me that I've had it real easy.

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

That's "FANTASTIC" news, I am sooooo happy to hear it!!!

Way to go Nana!

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DMike
Posts: 238
Joined: Nov 2011

Nancy,

Thanks for the motivation! You are tough. I'm with Fox, how many rounds of IL-2 can one take?

I have my first infusion, on April 9th at 10:00 pm. The schedule is 6:00 am, 2:00 pm and 10:00 pm. I'll be at Vanderbilt University in Nashville, TN in the critical care tower. The more I learn about their IL-2 reputation and the facilities there, the more confident and relaxed I am...sort of! I'm scheduled to return for round 2 on April 23rd.

Thanks again for the motivation.

--David

NanaLou
Posts: 69
Joined: Oct 2011

I just want to say a be Thank you for all  the kind comments. Tex that girl of mine is growing up fast. She is about to finish Kindergarten. I can't believe the stuff she has learned this year.  Fox and Dmike-- I don't know how many round of IL2 you can get. After my first round I asked how many times we would do it, He said three to four more. I hope and think by the way he was talking this should be my last time. It all depends on how you react to the treatments and how the cancer shrinks. Dmike I am hoping and praying  the best for you. It is a rough treatment, but you can do it. I might see you there.

 

Nana Lou  

NanaLou
Posts: 69
Joined: Oct 2011

Well I go the results from my last scan done on Saturday today. There is no change. I am stable. Still just two spots  at 8mm each. Doctor is thinking it could just be scar tissue or dead tissue.  We will follow up with scans in three months to  keep and eye on it. Doctor said alot of times when spots this small are cut out and tested they are on longer cancer. This is what I am hoping and praying mine are. He told me that there is a 60% chance I am cured. He is calling my results a full response.

Prayers to all,

Nancy

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

[Slightly expanded version below]

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

Nancy, that's wonderful - yours is one of the best cases I can remember in a long time.  You're in the prime of life, with everything to live for, but your pathology was bad, with the major sarcomatoid element making it highly aggressive.  It was caught early but late enough to have had a pretty dismal prognosis, and now look at you!!! 

You've not posted much in quite a long while so a lot of current members won't know you.  Are you, would you say, that rare example of someone with heavily sarcomatoid clear cell who has been treated with HD IL2? Your experience gives strong encouragement to David and to Fox (though they are both particularly gutsy guys, like yourself, and don't need assistance in being positive!) and to anyone else with a not too brilliant pathology.

The great Steve Dunn reckoned that immunotherapy (which in his time amounted to just HD IL2) held a lot of promise for treating sRCC as a histology characterised by aggressive behaviour and very rapid cell division - the same reason why the experts think some of the old chemos, such as gemcitabine with doxorubicin, are particularly appropriate.   The big difference is that IL2 is a natural substance with short-lived side-effects that are fully reversible without residual damage, unlike the synthetic chemos which do some inevitable permanent damage, whether or not they turn out to be successful treatments.

Perhaps, for the benefit of our fellow sarcy warriors, you can also add a piece to the "Sarcomatoid"  thread (which you, yourself started, back in Dec 2011) which seems to have fallen into desuetude - a pity, since it's a good resource? 

Here's to you, Nancy, and to your continuing well-deserved success.

Your determined attitude and your courage make you a worthy recipient of such a good outcome. Family and friends must be very proud of you.  How old is that little girl now - 6?

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

Nancy, that is such great and well deserved news, you must be thrilled!  Its wonderful to hear you are doing so well.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I am very happy for such a positive report! 

Don't be a stranger!  News like this is welcome any time!

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Nancy,

Good to hear from you. I've been wondering about you. Along with Lou, that's now 2 good bits of news from Vanderbilt. I sure would like to make it 3 next week.

Celebrate the news with lots of smiles and a few stress relieving sighs, you've earned it after 6 cycles off IL2.

i'm smiling for you! --David

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

And we're all pulling for you too David!!!

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

Boy, do I ever like hearing about your progress Nana. AWESOME!!!  You really did 6 rounds? Holy cow! I hope that I don't have to live up to your fortitude. Amazing inner strength we can have. I know that you had alot going on and look at you now. I am proud of you. Thanks.

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