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Old 05-17-2002, 06:09 AM   #1
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Location: Bloomington, MN USA
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Just_V HB User
Post Renal Cell Carcinoma

My mother was diagnosed with renal cell carcinoma in Jan of 2002. She had her kidney removed a week later and they thought they got it all. Her first recheck has shown "several spots" on her lungs indicating it metastasized. We found that out two weeks ago, in early May 2002. The doctor said to come back in 4 weeks and they will do another CT to see if they've grown and spread, and at what rate. He also told her there is no treatment for this. However I have been researching different treatments but I can't get all my questions answered.
I guess I'm looking for people that have experience with this disease to let me know what we're in for. I know it's not good...I'm just scared and want to know as much as I can and would love to hear other's stories.
Any info would be really appreciated. Thanks.

 
Old 05-18-2002, 08:05 PM   #2
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Marykate HB User
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Hi, Just_V, and welcome to the cancer forum.

Your mother's diagnosis is shocking and frightening, but don't despair just yet. Here's why:

In 1984, at age 59, my mother was found to have a "coin lesion" in her lung. The lung was removed, and pathology revealed it was renal cell carcinoma; it had spread before we even knew she had it. The kidney tumor was subsequently found and the kidney removed shortly thereafter. We learned it was a relatively slow-growing disease, and surgical resection was the first and most effective line of defense. "Watchful waiting" was recommended, unless and until there was evidence of regrowth or yet-undiscovered additional spread. Thankfully, she never had a recurrence.

A decade earlier, her sister had received the same diagnosis, though there was no lung involvement, and the exact same treatment was employed: surgical resection. She lived 20+ years before succumbing to an unrelated disease.

A few years after my mother's experience, my cousin was diagnosed with the same disease. Again, surgical resection was the treatment utilized. When a recurrence was discovered 18 months later, he was then treated with a combination of interferon, 5-FU, and another drug whose name escapes me at the moment. Unfortunately, he did not tolerate the treatment well. Though modifications were suggested, he refused further treatment and passed away several months later.

So, the news is pretty good! Both my mother and aunt were winners. As far as my cousin was concerned, his decision to discontinue treatment was personal choice. Who knows what might have resulted if he pursued other avenues? Anyway, that was then and this is now. I'm unfamiliar with the state of the art as it exists today, but I think it's safe to say medical technology has advanced, not regressed, since then.

Your post indicates you hail from Minnesota. (My son played for the Rochester Mustangs. Go 'Stangs!) Assuming your mother is in the same vicinity, you can't do much better than Mayo. If she's unable or unwilling to receive treatment there, do your utmost to convince her to (at least) get an opinion from one of their physicians. Most are world class.

Also, encourage your mother to be proactive. Not knowing her present health status, she may or may not be able to do much. Send for literature and make it available for her to read. Or read it to her. If you will be heavily involved in your mother's "journey," research, research, research. If other family members will be involved, delegate jobs. Go to the library, read everything available on kidney cancer, take notes, ask questions of her doctors, surf the 'net, ask more questions, take more notes, compare your notes with someone else's notes . . . I think you get the drift. Knowledge is power! Again, wherever and whenever possible, encourage your mother to lead the charge. It's important that she feels she's in control.

I'm a relative newcomer to this particular message board, and I must tell you it's a very friendly bunch. Everyone here has been touched in some way by cancer, and no one is more willing to lend a helping hand than someone who's been there. Write as often as you like, even if it's just to vent. It's a scary time for you right now, I know, but your fear may be lessened if you let others help. Oh, and it's not just friends and family members who post on this board. Survivors and those undergoing active treatment do, too.

Best of luck to you, Just_V. I'll keep your mother in my prayers.

Marykate





[This message has been edited by Marykate (edited 05-18-2002).]

 
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Old 05-19-2002, 02:39 PM   #3
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Marykate HB User
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Hi, again, Just_V,

Just read about bevacizumab (antiangiogenesis class of drugs) for treatment of advanced metastatic kidney cancer, in clinical trials nationwide, ". . . in high doses significantly slowed the growth . . . as compared to those who received placebo . . ." Check out the NCI website for more info.

Marykate


 
Old 05-19-2002, 04:28 PM   #4
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Just_V HB User
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Thanks for your replies! I have been doing a lot of research and I've actually been making a book out of anything I can find on the subject - that way mom can read through some of what I've been telling her. For now she feels great, and she hasn't done much research AND part of her is in denial. I'm preparing myself for the worst, and I already told her that if her doc says there's nothing they can do, that we WILL look elsewhere - second, third and fourth opinions!

We are about an hour and a half away from Rochester, and that's where I'd like to bring mom for the second opinion. For now we wait a couple weeks to see what's really going on inside of her. Yes, it is scary - she's 65 years old and has always taken care of herself and is very independent and active. My heart is breaking, but at the same time I am enjoying this time because she is feeling good and it's just like "normal".

Thanks for sharing with me. It feels good to know that there are people out there that have made it through this. Wish us luck for the next doctor's visit. I'm afraid it could be very bad news....(preparing myself).

Thanks again ~V

 
Old 05-02-2004, 02:26 PM   #5
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his wife HB User
Re: Renal Cell Carcinoma

My husband was diagnosed with renal cell carcinoma in April 2001. He had his right kidney removed and was told that it looked as if they got it all. About a year later he had a ruptured appendix and nearly died from that. Then in Aug. 2003 he had his routine chest x-ray and abdominal CT scan and they say 3 nodules on his left lung. He was sent to an oncologist and was put in a clinical trial starting Oct. 9, 2003. It was for Avastin and Tarceva. He continued with the Tarceva through December but the side effects were too severe (a horrible itchy, acne like rash) so he had to go off of it. The Avastin was not giving him any side effects so he continued on it and it seemed to be working. Then in early March the doctor told us that the tumors were growing and that he now recommended surgery to remove the tumors. He had the upper lobe of his left lung removed on April 15, 2004. They also took out 10 lymph nodes and one of those was determined to have the cancer too. We have an appointment on May 6 with the oncologist to see where we can go from here. He had at one point suggested either Interferon or Thalidimide but both have only about a 20% chance of working. At this point in time we just take a day at a time and keep looking for any new information about this cancer. He had never been hospitalized in his life until he got this and he is now 60! I told him he just "saved up" for the big stuff! Good luck to all who are suffering from this incidious disease.

 
Old 07-24-2004, 04:24 AM   #6
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leigh4ta HB User
Re: Renal Cell Carcinoma (Sarcamotoid)

My brother was diagnosed in early May with Sarcomatoid Renal Cell Carcinoma.

Sarcomatoid variants of renal cell carcinoma (RCC) are aggressive tumors that respond poorly to immunotherapy.

I am looking for ANY information on this specific type of renal cell cancer.

I contacted all the comprehensive cancer clinics to try to learn the trial studies and the outcomes (or if any exist for him to participate in).


I have gotten NOTHING back.
MD Anderson in Houston, Mayo , UCLA kidney cancer center etc. NONE of them have much to say.

I am looking for a doctor that is willing to TAKE AN INTEREST in him. (Jerry is his name).

His situation is as follows:
He had a caugh. It revealed spots on the lung. It was advanced stage 4 RCC
They removed the kidney (found numerous growths that could not be removed in the body outside the kidney.)

Put him on chemo and Imuno thearpy (although stats say this is not an effective treatment).

Next - Brain tumor the size of marble found and removed.

Now - sneezed and broke rib - they say it is in the bone marrow.

This is ALL in a 3 month period.

NOT ONE of the doctors have told him his true prognosis. Yet they told me "months". Then after that - the doctor has not returned ONE of more than 10 phone calls ..

NOT the way I would want to be treated - Even if there was nothing to be done. Why do the doctors so TOTALLY blow the patient AND the family off like this.

NOW - finally he is willing to go to Houston -- Any ideas anyone?

Thanks
Leigh

 
Old 06-11-2007, 02:13 PM   #7
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muthapanhead HB User
Re: Renal Cell Carcinoma (Sarcamotoid)

Oh my G-d! I am so sorry your going through such a hard time. Its bad enough to suffer with cancer, but to be treated so poorly is unforgiveable. I am starting to get a taste of neglect. My husband has just been diagnosed with kidney cancer in the bone! We are sick with worry and fear. We have read many positive things about surviving, but all the same it is horrible. I will pray for you. I am in NY so I'm only familar with Cornel hospital so far. love and prayers, muthapanhead

 
Old 06-15-2007, 11:02 PM   #8
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Huskerboy HB User
Re: Renal Cell Carcinoma

Leigh...

Don't give up... and don't waste ANY time! I want you to contact one of the Cancer Treatment Centers of America... they have four (I think) locations across the US, and I would never EVER consider going anywhere else!

I live in the midwest and go to Tulsa for treatment. The people are outstanding and so is the care. They treat you like a real person, body and soul, and they've done some remarkable things.

Please call them today and see if your bother's insurance will provide coverage. Don't wait...

Wishing you all the best!

Last edited by moderator2; 06-16-2007 at 04:42 AM. Reason: posted commercial website

 
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