New Kid on the Block

toolman1 said:

9/19 update
Met with "the MAN" today. Good news is the "Bone Scan" came back clear, no problems. However..... CT found 2 new, 2mm nodules in the lungs. The rest of the chest and midsection are same, no change. So on Friday 9/21 I will begin 6 infusions (1 per month) of Zometa, to choke off the blood supply to any/all cancerous nodules, and it looks like on Nov. 4th, that "NASTY" IL-2 treatment will begin, and yes Alice, I did read foxhd thread. There aren't any local clinical trials in the L.A area at this time. Hard to believe huh? The Dr. is watching the results of those trials carefully. He is SO on top of all the cutting edge stuff. He amazes us! Anyway, we're gonna ""throw the kitchen sink" at this GD disease!

A BIG THANX, to all for the support. It's what keeps us ALL strong! Stay tuned.

Kitchen sink et al...
Gary,

You have the medical team you trust, you have meds that yield results, you have options as time goes by, and you have a great attitude. In short, the toolman has the tools necessary to beat the crap outta RCC.

Kick butt,

Gary

toolman1 said:

Started Zometa today
9/24 Hello again everybody. I was scheduled to start the Zometa infusions last Friday, (9/21) however we were to go up the coast to some friends for the weekend, and I did not want to go through the possible nausea and other side effects associated with Zometa, so I actually started it Monday AM. The nice part was that the hospital included an injection of an anti nausea medication into the IV, as the Zometa was administered. Monday and Tuesday were a breeze, except for a very sleepless night on Monday. Wednesday AM was a whole new ball game. I felt as though I had gone through 12 rounds with Mike Tyson!! Sore muscles throughout my back, my neck felt as though I had whiplash from a car accident, and my hands felt as though I had a severe case of arthritis. I took several Tylenol's with only a slight relief, so I just put up with the pain. Today 9/27, the back and neck are better, however, the muscle pain has shifted to the right foot, and the hands still hurt. So, I'll stop with the sniveling, and just hope that this Zometa stuff performs as is should. Stay tuned.

Pain side-effects
Let's hope the pain signals the effectiveness of the treatment. That seems to have been the case with a number of people here, notably, of course, Fox.

toolman1 said:

Started Zometa today
9/24 Hello again everybody. I was scheduled to start the Zometa infusions last Friday, (9/21) however we were to go up the coast to some friends for the weekend, and I did not want to go through the possible nausea and other side effects associated with Zometa, so I actually started it Monday AM. The nice part was that the hospital included an injection of an anti nausea medication into the IV, as the Zometa was administered. Monday and Tuesday were a breeze, except for a very sleepless night on Monday. Wednesday AM was a whole new ball game. I felt as though I had gone through 12 rounds with Mike Tyson!! Sore muscles throughout my back, my neck felt as though I had whiplash from a car accident, and my hands felt as though I had a severe case of arthritis. I took several Tylenol's with only a slight relief, so I just put up with the pain. Today 9/27, the back and neck are better, however, the muscle pain has shifted to the right foot, and the hands still hurt. So, I'll stop with the sniveling, and just hope that this Zometa stuff performs as is should. Stay tuned.

side effects?
Hi Toolman -
I've been taking Zometa (perhaps a different dosage?) for a couple of years now and with no side-effects, nor any mention of them. Your side-effect sound just like what happened to me when I got a myalgia from a anesthesia once - every muscle aching like I had just gone through a gymnastics obstacle course.

As to Sutent side-effects, DON'T spend time reading people's side-effect blog websites, they are not representative as only people with bad side-effects contribute.

I agree with your surprise at how pain-free the nephrectomy was. The day after I got mine my chest tube was bothering me and I was asked if I wanted pain medication. I asked "What pain medication am I getting now?" Answer: "None." ! A ten-inch scar with a partial rib removed to make room for my kidney removal, and without following pain. Amazing. Had I known it would have made the trepidation smaller I think.

toolman1 said:

HD IL-2 Upcoming
10/20/12 8PM

OK, and again Hi all. Spent the better part of the day @ USC Med. Ctr. w/ director of the cancer center, his staff, and the scheduling staff, making arrangements for a battery of EKG/stress test/scans/blood tests/PICC line insertion/ etc, etc. I'm gonna be there Wed. 10/31 from 7AM-7PM or longer. YUCH!! They scheduled me for admittance 11/4, to begin that wonderful treatment that so many of you have gone through. I am hoping to hear suggestions from Phoenix Rising/NanaLou//jam66 and all others re; expectations. The director hopes to see me make it to at least 9 infusions, and the more, the better. I already have a handle on the Ginger root thing, the Coca-Cola thing, a heating pad for the feet, to ward off the chills, and when to ask for injections to ward off nausia, sleeplessness, etc, and have pre-warned the wife of the same concerns. Any/all additional suggestions will be warmly accepted. FOX, you are the team leader here. Some words of wisdom would go a country mile about now! Thank You ALL! Gary

WOW
...or words of wisdom.........Boy, Gary, I have little to offer except, Good Luck! Il-2 may be in my future but I only know what you know. Everyone wonders how they will tolerate the treatment but they have no way to know for sure. I like to think that if it were me, that I would be able to gut it out and make it through the entire treatment series. If it were stopped it would be because the medical team stopped it, not me. Whenever I need to dig in and need fortitude, I do one of 2 things. Either I repeat a round of golf , shot by shot in my head, or I try to repeat running a marathon mile by mile. Visualizing the sights and sounds along the way. It allows me to find that place in my head where I can cope or retreat to with a positive result at the end. That's how I do it. My secret is out now.

Limelife50 said:

Good Luck Gary
It seems you got a great attitude going into this and i think thats half the battle,i will be pulling for you to be able to tolerate all 9 doses and also praying that this treatment is effective in ridding your body of this disease P.S Just a side note to Texas i hope you are able to get some long term results from your drug thearapy and along the way qaulify for the HD-IL2,oh and also have you ever considered shaving your head,just thought it might make you look a little more tough!!!!!!

Image
Grrrrr!!! You don't have to look like a Fox to be tough!
Still needing to find out if starting Votrient would kill my chance for a shot at IL2. Any hard info anyone has on this point would be appreciated.

toolman1 said:

HD IL-2 Upcoming
10/20/12 8PM

OK, and again Hi all. Spent the better part of the day @ USC Med. Ctr. w/ director of the cancer center, his staff, and the scheduling staff, making arrangements for a battery of EKG/stress test/scans/blood tests/PICC line insertion/ etc, etc. I'm gonna be there Wed. 10/31 from 7AM-7PM or longer. YUCH!! They scheduled me for admittance 11/4, to begin that wonderful treatment that so many of you have gone through. I am hoping to hear suggestions from Phoenix Rising/NanaLou//jam66 and all others re; expectations. The director hopes to see me make it to at least 9 infusions, and the more, the better. I already have a handle on the Ginger root thing, the Coca-Cola thing, a heating pad for the feet, to ward off the chills, and when to ask for injections to ward off nausia, sleeplessness, etc, and have pre-warned the wife of the same concerns. Any/all additional suggestions will be warmly accepted. FOX, you are the team leader here. Some words of wisdom would go a country mile about now! Thank You ALL! Gary

IL-2
This is probably something you have already picked up, but the biggest demon for John in the IL2 treatment was pruritis. The itching and rash and peeling was horrendous for him. I think it was Phoenix Rising who recommended tons of moisturizing prior to the start of the treatment. I know John had read it and said he wished he had seen it prior to starting treatment because anything to keep it at bay is worthwhile. Pruritis made him miserable and robbed him of sleeping and rest, which prolonged his recovery.

I'd also say not to get too focused on the number of infusions. I've heard just as many success stories with dosages of less than the maximum. Are 14 doses still the maximum? I know they want you in the higher range, but listen to your body. Higher doses do not exactly mean success. John received 14 doses during his first round and 10 in the second and it wasn't a success story for him. Yet I've heard of others with a response with only 7 or 8 doses per round.

Good luck to you. I hope you can keep us updated on your progress. We're in your corner.

Texas_wedge said:

Image
Grrrrr!!! You don't have to look like a Fox to be tough!
Still needing to find out if starting Votrient would kill my chance for a shot at IL2. Any hard info anyone has on this point would be appreciated.

IL2 After Votrient
Tex,
Alice and I have been racking our brains trying to remember our first visit to my oncologist because of conflicting information on this site.To the best of our recollection the conversation went something like this.He told me I picked a good time to get kidney cancer.At the time I didn't really understand or appreciate this remark,but I certainly do now.He laid out many treatment options,writing them down on a piece of paper.Among them were IL2,MDX-1106,and targeted kidney cancer drugs like Sutent and Votrient.He told me that IL2 treatment was Draconian,and that many hospitals refused to do it for that reason and the risk of death that comes with it.The doctor also said if I elected IL2 it would have to be my first treatment option.He said it wouldn't be available to me if I opted for another treatment first.I'm not sure if this is just the protocol at Johns Hopkins,but I seem to recall him saying IL2 wouldn't be effective if I tried another treatment first.That made my decision to try IL2 first easy,since it was my only chance for a total cure.
I know this seems to contradict what some some others have writen on this site,but that's the way we remember it.I plan to ask my research nurse tomorrow about the effectiveness of IL2
after other treatment options,and will let you know her response.
Stay well fight on.You remain in our prayers.
John

one putt said:

IL2 After Votrient
Tex,
Alice and I have been racking our brains trying to remember our first visit to my oncologist because of conflicting information on this site.To the best of our recollection the conversation went something like this.He told me I picked a good time to get kidney cancer.At the time I didn't really understand or appreciate this remark,but I certainly do now.He laid out many treatment options,writing them down on a piece of paper.Among them were IL2,MDX-1106,and targeted kidney cancer drugs like Sutent and Votrient.He told me that IL2 treatment was Draconian,and that many hospitals refused to do it for that reason and the risk of death that comes with it.The doctor also said if I elected IL2 it would have to be my first treatment option.He said it wouldn't be available to me if I opted for another treatment first.I'm not sure if this is just the protocol at Johns Hopkins,but I seem to recall him saying IL2 wouldn't be effective if I tried another treatment first.That made my decision to try IL2 first easy,since it was my only chance for a total cure.
I know this seems to contradict what some some others have writen on this site,but that's the way we remember it.I plan to ask my research nurse tomorrow about the effectiveness of IL2
after other treatment options,and will let you know her response.
Stay well fight on.You remain in our prayers.
John

IL2 After Votrient
John, that's very kind of you.

You make a good point about whether it might be a local rule at JHH. My Wife reminds me that there's a world of difference between what's necessary for trial design purposes (for statistical breakout etc.) and what's determined by biochemical issues. She doubts that there would be biological grounds for an embargo, other than the likelihood of being too debilitated by unsuccessful Votrient treatment to be able to take the Draconian IL 2 regimen (especially at 70+). If that's correct it would possibly leave me OK since both treatments would be outwith the context of trials and hence immune from any design constraints.

I look forward to the answer you receive and must thank you again for taking the trouble. I'm glad you've done so well on your trial and I still think the prior IL 2 treatment may have been instrumental in facilitating the gains you are enjoying now.

Texas_wedge said:

IL2 After Votrient
John, that's very kind of you.

You make a good point about whether it might be a local rule at JHH. My Wife reminds me that there's a world of difference between what's necessary for trial design purposes (for statistical breakout etc.) and what's determined by biochemical issues. She doubts that there would be biological grounds for an embargo, other than the likelihood of being too debilitated by unsuccessful Votrient treatment to be able to take the Draconian IL 2 regimen (especially at 70+). If that's correct it would possibly leave me OK since both treatments would be outwith the context of trials and hence immune from any design constraints.

I look forward to the answer you receive and must thank you again for taking the trouble. I'm glad you've done so well on your trial and I still think the prior IL 2 treatment may have been instrumental in facilitating the gains you are enjoying now.

IL2 After Votrient Part 2
Tex,
I spoke to my research nurse today about IL2 after Votrient.She told me my oncologist would be the one to ask as to why he insisted on IL2 first.Unfortunately, I don't see him again until February.However,she did say IL2 was considered a "first line"treatment option.Typically,patients are at their strongest at this point(less debilatated from other treatments)and more able to withstand the harshness of the IL2 treatment.In addition,she offered that pazopanib,sunitinib, and others in the TKI family of drugs,are cardio-toxic.This could increase the likelihood of a heart attack if IL2 is administered after a TKI drug.I hope this helps you in some small way.
Best Always,
John