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PET scan results show lung mets

thaxter's picture
thaxter
Posts: 72
Joined: Jan 2014

I had my first post surgery scan on 1/16 but didn't see the doc until today.  I have four or five small nodules.  Largest in one lung is 7-8 mm and in the other 10 mm. My oncologist has referred me to a Dr. Weiss at the Emily Couric Cancer Center at UVA hospital for possible IL-2 treatment.  He described it as two five day hospital admissions where I'll be monitored in the ICU in case of adverse reactions to the drug.  My appt with Dr Weiss may be next Thursday.  

thaxter's picture
thaxter
Posts: 72
Joined: Jan 2014

Dr. Weiss's bio says he has pioneered the high dose IL-2 therapy for RCC http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/hematology/faculty-fellows/bios/weiss

donna_lee's picture
donna_lee
Posts: 416
Joined: Feb 2009

with this group, but hate to have you need to join in.

It is so disgusting that something no bigger than an uncooked bean could cause so much fear or damage. (I hate to say Kidney bean...but I did.)

Fox is the one to share his experiences with IL2.  And I have a friend who had 3 separate sessions with the drug.  One week in ICU, then 3 out; and back again.  After the third round, the Dr halted the treatment because her heart couldn't handle the drugs.  Since that time in 2009, the nodules have remained stable (not growing) and she is OK.  But IL2 does mess up your calcium and potassium balance and have a number of other side effects.

So learn all you can about your line of treatment, pull up you big-guy boxers, put on your game face and give it hell.  We are partial to survivors and want to include you in this select group of crazies.

Good luck and keep us posted along your journey.

And seeing by the time between when I hit send and got a chance to edit, you are an east coaster.  There are many EST people on this board.  Hope they respond to you.

Donna

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Thaxter... sorry you have to be here...  The good news is your Mets are very small (wanna trade..???).  And there are many treatments that seem to work.  Again all good news.  The HD IL2 is one tough treatment... not for the meek or the weak.  But if it works on you the results can be long term.  Not necessarily a cure, but long term for the select few.  I am pretty sure I read that some doctors have a screening process that eliminates the poorest candidates, thus increased the success rates of those treated.  There are a few posts here on this subject.. but the most in depth posts are from our dear Fox HD, he wrote a very detailed report on his experiences.  I do caution you... if you read that post you may wish to be wearing Depends.. it may scare the crap out of you..!  Also some people seem to have much less issues during treatment.. and as we all are different who knows for sure what any one person will experience.

Votrient is a very good drug, but can cause (temporary) Liver issues.  If so a dose reduction or a change in drugs could happen.

Good Luck..!

Ron

Srashedb
Posts: 200
Joined: Dec 2013

was your tumor staged? Your nephrectomy was one week before my husband's; he had scans in late November and is scheduled for round 2 In late February.

i agree with others; Fox is the voice of experience with your recommended treatment.

Smart Patients has discussions on better results when this is combined with other drugs.

good luck to you,

Sarah

Jojo61's picture
Jojo61
Posts: 415
Joined: Oct 2013

Hi Thaxter,

Good thoughts coming your way. You will get lots of feedback from members who have had experience with this kind of thing. I am one of the luckier, simpler cases.

All the best!

Jojo

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I would guess 10mm would equal 1cm still small,i will be praying you get good results from your IL-2 treatment and i am sorry your PET scan results came back the way they did.

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Even a VT Hokie can cheer on an IL-2 Dr. At UVa !

Go get 'em. If you don't qualify or get cold feet on the IL-2, it is my understanding that my Dr's office will be opening up to patients for the Nivolumab trial arm here in Charlotte. Take a peek at my bio, Nivo took care of my lung mets in 12 weeks (if I recall correctly)

Beat of luck to you.

foxhd's picture
foxhd
Posts: 1953
Joined: Oct 2011

I'm not only the Hair Club for Men president, I'm also a client.....oops, wrong commercial. Many others have been on the Il-2. I guess I'm just the most recent. I honestly think that I didn't prove to be as tough as everyone thinks I am. I was like the cheap drunk who can't handle his booze. It didn't take much for me to hit the wall. Mentally it took me to the end of my coping abilities. But physiologically, my body just couldn't tolerate it. Others have managed to recieve much more of the drug than I could. It doesn't reflect ones response to the treatment. I've been told that if Il-2 is to work for someone, only a few doses may be enough. So, I've done well.

My suggestion is to keep in mind that you can live through anything regardless of how hard it is. Getting through the treatments is the short term goal. The long term goal of a cure is well worth the difficulty. I would go for another round of it in a heartbeat. Worth mentioning is the belief that the Il-2 treatments seem to help other drugs be more effective once the Il-2 is in your system. Also worth mentioning is that except for the Il-2 and a couple of doses of zometa for my bones, I have not recieved any other drugs since June or maybe May of 2013. And I am stable. Scans have been reduced to every 3 months. It could change any day. If or when it does, well, that's another story. My doc expects good things to continue happening. She doesn't have a back up plan at this point. So I say ,"Go for it."

I had tried to keep a running post of my treatments beginning in June 2013 on this forum. You can read back and watch my physical and mental health do a nose dive. But now I am feeling as good as I have in at least a couple years. Worth it? Hell yeah!

thaxter's picture
thaxter
Posts: 72
Joined: Jan 2014

I will mention the Charlotte trial to Dr. Weiss when I see him next week for the first time.  I don't know what might disqualify me for IL-2.  I have mild diabetes and my BP has started to go up again--I had a couple of years of lisinopril but got off last year probably because of losing weight due to kidney cancer.  My onc said to go back to HCTZ but I don't have any around except Lisinopril/HCTZ.  

I apologize in advance for the drubbing the Hoos will give to the Hokies today at 3:00.  Last game where they trounced UNC the announcers seemed to only talk about UNC.

 

thaxter's picture
thaxter
Posts: 72
Joined: Jan 2014

I did confirm my appointment with Dr. Weiss at UVa.  And I've been doing my homework on IL-2.  I think I will go for it if I qualify.  Since the nephrectomy in September I am feeling so much better and I am back over 200 lbs (was 155 after surgery).  I don't know how I will do on the lung function or stress tests--I've been in a sedentary job for 42 years but I am in pretty good health except for the RCC.  My BP is  elevated--in 2011-2013 I was on lisinopril and HCTZ but when it got to 120 over 80 I was taken off any BP meds last summer.  My oncologist said I might want to take HCTZ and when I asked if a diuretic would be hard with one kidney he said it was better than lisinopril.  I don't have any HCTZ at home--just combined lisinopril/HCTZ pills and also a very low dose lisinopril--5 mg.-- which was my last prescription.  I don't know whether to call my PCP for that or if I can call the oncologist back since I had told him I might have some HCTZ at home.  When I asked whether I should see my PCP the oncologist said no.

 

Anyway, trying to get ducks in a row before my appt with Dr. Weiss on Thursday.  It does appear the the UVa cancer center is a long term IL2 site, but I'll ask about that too.

 

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