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IL15 (Interlukin 15) - Kidney Cancer Chronicles

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

http://kidneycancerchronicles.com/of-porn-and-natural-killer-cells-the-mean-streets-of-the-national-institutes-of-health/

I just received an update on Chris Battle who has undergone many different treatments in his war with kidney cancer. He is currently at the National Institute of Health in an IL15 trial. The link above will take you to his most recent dialogue. I enjoy his writings as he always includes humor, as you'll see in his latest.

cfegles
Posts: 3
Joined: May 2012

Hi Alice, I've read a few of your posts here and from what I've read it appears that your husband is newly diagnosed, or am I misinterpretation that? My husband had his left kidney removed on Jan 30th, after being diagnosed shortly after the 1st of the year. He is about to start IL-2 this coming Monday. I'm sorry to hear that this didn't work for your husband and we know the percentages are pretty low going into it. My husband just email and has heard back from Chris Battle concerning the IL-15 trials so we have contacted his Dr. and will wait to hear back from him.

How are you doing as a caregiver? I have good and bad days and I'm feeling my anxiety level increase as we are counting down to this Thurs. to go in for all the preliminary tests (pulmonary, EKG, next CT scan, etc.). I feel as if we are living an alternate reality waiting to wake up in our old life again. But we too are finding comfort in this new community, discovering great knowledge and wonderful resources.

So, all that to say Hi :) Chris (caregiver to Mike who has MRCC)

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

Hi Chris,

Yes,you are right. My husband was diagnosed with Stage IV/Grade IV clear cell carcinoma in mid-October 2011 with four lung mets. He had a nephrectomy in November 2011 and started HDIL2 in January 2012.

While everyone's side effects to HDIL2 are different, my husband went through the first treatment with non-severe side effects. In fact, he had the maximum doses (14) during the first round with only mild side effects while in the hospital. He did experience more discomfort once home with a long (3 week) bout with intense itching (pruritis), red skin, peeling, esophogitis, achiness, general fatigue, and weakness. It postponed his second round of treatment until early February 2012.

The second round was tough. He experienced many of the nasty side effects and was miserable the entire time. For four of the five days he was bed ridden with too low blood pressure, terrible nausea, capillary leakage, and flu-like symptoms. This time he completed 10 doses. Once he was home, he remained weak and drained for several weeks.
On March 15, he had a catscan that reflected one lung met had decreased in size, three mets had increased in size, and two new mets. The catscan did not merit continued HDIL 2.
Despite the lack of progress after the HDIL2 (though there still may be some latent benefit), John does not regret the HDIL 2 treatment. He's glad he went for the GOLD* (*cure). And he encourages others to do so. The IL-15 trials are newer and I hear (?) are less harsh, though that's just my understanding, not a fact.

John's now in a clinical trial and decided to go for the MDX 1106 and Votrient/Sutent trial. He started that on May 10 and so far has experienced no side effects.
As far as being a caregiver, I'm holding up pretty well. But you're right, this whole thing is still surreal even though I've had 7 months (just counted on my fingers) to digest the fact. It still feels new and unbelievable. Sure, I control my tears more than in the beginning, but it's still hard to believe that he has STAGE 4/GRADE 4 cancer. I find myself waking up in the middle of night thinking it's all a dream. I ask when and how did this happen? One day he's playing golf; two days later we're looking at tumors on the catscan.

But John's got a great attitude, a wonderful sense of humor, and pulls me up when I'm down as I do him. His attitude and sense of humor, the support of family and friends, our faith, and this Board have been Godsends in our life. And we've decided to focus on the positives in our life and not the negatives.

I wish you and Mike nothing but success as you tackle this horrible disease. I'm here if I can help. The strength of this Board is phenomenal.

I'm curious as to how you discovered his cancer? What signs did he have?

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

Hi Alice,

As I have watched you and John battle RCC together I'm compelled to say that you have impressed me with your grit, drive, and devotion. We tend to concentrate so much on the patient that sometimes we forget that the emotional strain on a caregiver can be equally as devastating as the disease itself. While many would wilt and find themselves unable to cope, your resolve seems only to have strengthened, I'm sure he knows it, but John is very fortunate to have such a strong partner to rely on. Your attitude and spirit should be an inspiration to all caregivers and patients alike, you ROCK!!

Sincerely,

Gary

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

Thank you Gary. Your words are kind.

Some people say that we're never given more than we can handle, and I tend to believe that's true. I think with the addition of big challenges such as a diagnosis of cancer (for you or a loved one), we get overdrive gears to help us take it on. I consider this board and its supporters--you, Tex, Fox, and several others--an extra gear.

Thank you for being here.

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

Hear, hear, Gary! But as Alice says, they're a great team. That doubtless goes for many here and those of us who are so blessed probably all know how lucky we are.

CThughes
Posts: 21
Joined: Apr 2012

Alice,
John is so very lucky to have you. i lost a kidney to RCC 2 years ago. i was diagnosed with Prostate cancer in November and had a radical prostatectomy in January of this year. First PSA one month after surgery was 0.0. The nes PSA 2 months later was already up to 0.39, looks like a recurrence. My fiance bolted 2 months to the day after my surgery. There is no way to put a value on a strong, supportive "better Half". And no way to explain having one walk out on you.

Todd

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

Todd,

I am so sorry that you suspect reoccurrence and hope the PSA goes down.

And while I don't normally infiltrate myself into other people’s “matters of the heart,” I’m going out on a limb here. As I’ve posted before, I believe challenges are given to us for a reason. Perhaps your health issues occurred because you needed to recognize that your fiancée was not the wife you were looking for. I know it has to be hard, but you need to concentrate on you and your health. Your health is what is most important. Consider yourself lucky to realize she was not the marrying type before the wedding.

So build yourself up, get strong, get healthy, and think confidently. Love will find you again. I promise. . .

Keep us posted on your progress.

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

I'm not into revenge per-say, but get healthy, go find yourself a babe and buy a convertible, let her know she won't be missed!

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

Perfect example of "Women are from Venus, Men are from Mars."

I said the same thing as Gary but used a lot more words.

CThughes
Posts: 21
Joined: Apr 2012

Thank y'all for your thoughts. I try not to be angry and think revenge, but I just can't get a grip on how someone could walk away from their fiancé at about the lowest time int their life. I got past the kidney cancer, made it through the prostatectomy (really not a lot of fun) and thought ,ok, that was it I've had my share. Then to find out it's not gone and the person you counted on so much runs out on you, I'm about at rock bottom. And no one that I knows can understand why I'm so upset. I guess if you just haven't been on the ride you just don't get it.

CThughes
Posts: 21
Joined: Apr 2012

Thank y'all for your thoughts. I try not to be angry and think revenge, but I just can't get a grip on how someone could walk away from their fiancé at about the lowest time int their life. I got past the kidney cancer, made it through the prostatectomy (really not a lot of fun) and thought ,ok, that was it I've had my share. Then to find out it's not gone and the person you counted on so much runs out on you, I'm about at rock bottom. And no one that I knows can understand why I'm so upset. I guess if you just haven't been on the ride you just don't get it.

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

It sucks - no ands, ifs, or buts. Life is not fair. If it was, this board would not be in existence.

Go back and read you post on being thankful for how you were diagnosed early and how well you've done. If you let your ex-fiance' pull you down, you're not being the best you can be and you are hurting yourself. You're a strong, more knowledgeable person than you were when you started this journey and holding on to anger or revenge will just slow down your total recovery and, more importantly, prevent you from opening your heart and allow others in. Forgiveness-followed by the realization you deserve better--are great healers.

CThughes
Posts: 21
Joined: Apr 2012

Thanks for your words of encouragement and advise Alice. I know you are right, my doctors have told me as much. My body has taken a pretty good beating over the last couple of years, cancer twice, knee surgery, shoulder surgery, 2 eye surgeries, and I'm leaving something out. I've tried to take of myself, at 54 I'm the oldest guy in the office, but I'm probably in the best shape of anyone, and it's been really hard to keep up with what's happened in the last couple of years. But my doctors keep telling me that if I can't put my heart and my mind back together, it's going to be really hard for my body to fight this thing. That while being in good shape physically will help, i've got to get my mind right again. I'm going to a psychologist.

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

That's a very smart move Todd. A good psychologist will make all the difference and will help set you up for how you want to be living your life, getting more out of it and having more to give at the same time.

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

Todd-Great news and a step in the right direction. Not everyone is strong enough to admit they need a little help in getting to the next step. I'm glad you have that strength. Talking to someone will expedite your overall healing and recovery. You have been through a lot but you'll come out better for it on the other side. Keep us posted.

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