CSN Login
Members Online: 5

New Kid on the Block

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Hello All;
Well, 7/24/12 is gonna be my day of reckoning. I will be going under the knife @ USC's Keck Medical Center for left kidney, radical nephrectomy, and left leg fibula modification, due to metastatic Renal Cell cancer in the upper knuckle. It's going to be a 6-7 hour tag-team surgery in one OR. But, let me fill you in on the path to this point.
Late in January of this year, after returning from a weekend of target shooting, I was unloading my Jeep, and lost my balance, getting my left leg trapped between my trailer hitch ball and rear bumper. Fortunately, just before the lower tibia bone snapped, my left foot was leveraged off of the ground. I limped around for several weeks, performed the usual ice pack/ heating pad sequence, even purchasing an ultrasonic massager, in an attempt to repair what I could. All this offered no relief, so I began going to my GP doctor. An initial set of X-rays, proved inconclusive, so then it escalated to MRI's both with contrast and without, CT scans, again with and without contrast, then a PETscan,brain scan, and several pelvic CT scans, and a biopsy of the damaged left leg. Conclusion, a 4mm Metastatic Renal Cell tumor of the left kidney, that is blocking the exiting vein, and infecting that same vein. At this point, the cancer has not yet reached the aortic artery (thankfully), but in addition, the cancer has attacked the left leg fibula bone (apparently resulting from the leg injury. This is the medical communities, justification, but we think the fibula may have been infected previous to the injury).
Initially I was scared to death, but quickly overcame that, reading nearly everything that is medically accountable on line. I am thoroughly confident in the USC Norris Cancer Center staff, and at this point, just want this S#*T out of my body, so I can get on with my life, which includes RV'ing, off roading, hiking, fishing, and anything else outdoors. I am a contributing member of several RV websites, so posting is well understood. It looks like the RV is gonna be sitting high and dry for a while. I, (we), welcome any/all responses. Thanks for your time folks.

matchframe
Posts: 58
Joined: May 2012

Glad to hear you found it early enough to deal with it! Most of these cancers are found out accidentally from another issue just like you did. I found mine when I had a kidney stone and after a CT Scan, they said, "...oh by the way, you have a mass on your left kidney". Mine was taken out with traditional surgery like you will have.

Be sure to keep updated with your progress!

Oh, and welcome to our club!

Bill

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

Hi Toolman,

Welcome to our exclusive little club, its not by invitation, you have to be special to get in, yeah right. At 4mm the met in your leg is pretty small and its good that they found it now, any estimate on the size of the tumor on your kidney? Keep a strong positive attitude, do what your medical team tells you, drink plenty of water, and you'll be back doing everything you love before you know it. Keep us posted and we'll help you through it.

Good luck and Godspeed,

Gary

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

It is in fact, and I'm sorry if my statement was/is misleading, a 4mm tumor in my left kidney. Yes it is small, but the tumor blockage has cut the efficiency of that kidney to only 40% capacity. The fibula bone upper knuckle is completely engulfed in the cancer, and somewhere near the upper 2" of it is scheduled to be removed.

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

Toolman,

My mistake on the location, are you sure it is 4mm and not 4cm? At 4mm it would be about 1/2 the size of a pea and hardly detectable where as 4cm is close to golf ball size, tumors are usually measured in cm's. Mine was 4.2cm found following a motorcycle accident over 2-1/2 years ago. The important thing is that it is small and a surgical "cure" is likely, but spreading to your lower leg is concerning and quite baffling, I can understand why they feel it could be related to the injury, very odd. Life with one kidney is not significantly different than life with two and I suspect the surgery on your leg will bother you more than the nephrectomy, good luck with both, we'll help if we can.

Gary

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Hello garym;
You stated;
Are you sure it is 4mm and not 4cm? At 4mm it would be about 1/2 the size of a pea and hardly detectable where as 4cm is close to golf ball size.

You are exactly correct. My BAD! The tumor is roughly the size of a golf ball @ 4cm. (Damn metrics, anyway!)

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Wow, it never ceases to amaze me how many people discover they have RCC via an inadvertent accident. But I'm thankful you found it now and not five years from now.

Your accident does sound like a pretty painful experience. But I'm guessing that it had to be something BIG to get your attention since you took "weeks" to seek medical attention as it was. Anything less would have probably been dismissed as "no big deal". So on the positive side, I'd say you have a higher force in your corner. Cherish it!

May your operation and recovery be successful and quick!

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Toolman,

I hope your surgery goes well tomorrow. You will be in our thoughts and prayers. Just know that you have a supportive group of friends here to help answer your questions as your begin your recovery.

John

adman's picture
adman
Posts: 268
Joined: Jul 2012

Sending you positive energy for tomorrow. You are in my prayers, my friend.

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

NEWS FLASH!
Althouigh I'm not back in the saddle (yet), I am at least standing next to the horse. I amazed all the doctors and nurses, being able to need only minimal meds at night, nothing during the day, not only getting up and walking to the bathroom on my own, but making a full lap around the ward, without assistance, the day after surgery! Even surprised myself! For anybody in the L.A. area, I wouldn't ever suggest another hospital other than the KECK Medical Center @ USC! EVERYBODY, from the surgeons, residents, and all the way down to the maintanence workers had the greatest of attitudes, and nothing but support. Never a harsh word from anyone.
We came home Thursday 7-26 @ about 5PM. I'm slow to move, but only because of the soreness in the ribs. Believe it or not, there isn't a lick of soreness or stiffness in the left leg, (go figure). The phisical therapist came in yesterday before I was released, had me go thru some rudimentary movements, had me walk down the hallway ahead of her (probably so she could check out my rearend!), but she was watching the action of my left leg, then told me that her work was done, and she released me from her portion on the release program. Anyway, I'm home, resting comfortably.
And PS. Thanks SO, SO, much for the support and kind words. Both Lynne & I were very touched by the support.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Glad to hear you're on the road to recovery despite the medical staff sneaking butt shots!
Take care. Don't rush it!

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Spent the greater part of yesterday up at USC Med. Ctr. Orthopaedic surgeon removed all dressings from the left leg, snipped the ends of the subsoutures (sp?), checked the range of movement, answered all of or Q&A's and pretty much gave me a clean bill of health, (but still wants a 90 day follow-up). Then over to the Lab for some blood work the Urologist requested, and an hour later, a meeting with the Urologist. She probed and listened with the stethoscope, asked all the pertinent questions, answered all our Q&A's, and set up a conference with Dr. Quinn, director of the Norris Cancer Center, to discuss immunotherapy options, for 30 days from now. The Urologist wants more labs and another follow up visit in 90 days.
So for now, it's all about regaining my strength, walking, in time get back into the gym, and back to life as I knew it. My wife and I are so very grateful to all the knowledgeable people that have past through our lives the last 6 month's. There aren't words to adequately express our thanks. Stay tuned for further adventures.

adman's picture
adman
Posts: 268
Joined: Jul 2012

Great news, my friend. Glad all went well & you're doing great!

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

Toolman,

Sounds like you are a fast healer and I have no doubt you will be back to "normal" very quickly. Don't cha just love it when a plan comes together! That was one lucky fall, now go out and buy a lottery ticket while you're still hot.

Congrats,

Gary

foxhd's picture
foxhd
Posts: 2020
Joined: Oct 2011

Good work! Keep up the forward progress. Attitude, attitude, attitude.

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

9/11/2012
Hi, all. It's been seven weeks today, since the left kidney and left leg fibula head were removed. I have been getting stronger week by week, and as of today there is very little pain assiciated with the kidney surgery, and the left leg has never given me any problems, (go figure). I have been alternately walking 2-3 miles every other day, and on the between days, riding my mountain bike 3-5 miles a day. Endurance seems to be my only limiting factor when riding, getting winded fairly easily, but I assume that will improve over time.
My wife and I had a meeting with Dr. David Quinn, director of the Norris Cancer Hospital of USC Medical Center, last Wednesday, and he reviewed my case and wants to begin immunotherapy. But first, as in many of your cases, he will schedule several CT and bone scans that are scheduled for 9/13/2012, and then a follow up visit with Dr. Quinn the week after. I am holding my breath that no new lesions will have popped up, and that no further surgeries will be necessary. My fingers are crossed.
The 2 therapies that he is recommending for our consideration are Sutent, and Proleukin, both of which I have been reading about, and neither of which sound inviting. Both have UGLY side effects, but the Proleukin seems to have a better success rate.
So, any/all suggestions would be welcomed and considered. Thanx everybody. Gary

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Gary,

Since Proleukin is the only drug that has resulted in a complete response (though in a small percentage of patients), I would lean toward it.There are a number of people on this Board who are currently undergoing IL2 and several that have gone through it, and it's tough, but the possibility of a complete response is hard to walk away from.

While the chance of a complete response (cure) is under 10%, I don't think I've seen anyone post that they were sorry for giving it a shot.

I'm responding on the two options you mention above (Proleukin and Sutent). Another option you may wish to pursue is the MDX-1106 (BMS-936558) trials or combination trials. I believe those trials have been expanded recently.

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Thanks Alice. This week, I've been watching the thread from NanaLou with great interest re, her IL-2 treatments and side effects of same. I'm still on the fence here, but am ready to throw the kitchen sink at this disease. When initially informed of this RCC, I told all the Dr's, just get this S**T out of me, and I still feel that way. I guess the final decicion will be based on the results of the 2 scans taken last Thursday, and the recommendations of the medical director. I'm holding my breath and crossing all my fingers, that nothing new has popped up. We'll see tomorrow.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

No matter your decision, we're here for you. Did you have a chance to go back and read Fox's early postings? He initially wanted to get into an IL-2 trial, but was redirected to the MDX-1106 trial and never looked back.

Keep us posted whatever you decide.

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

Good luck on your results today, us Garys gotta stick together.

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

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.

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

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's picture
toolman1
Posts: 44
Joined: Jul 2012

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.

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

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.

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

Thanks for the update, I agree with Tex, the pain is just angry cancer cells being put to death. So hang in there Gary and we don't mind the sniveling at all, that's what we're here for.

Screw RCC,

Gary

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

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.

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

Strange game isn't it! I have a generally high pain threshhold but needed extreme levels of pain relief for days after my nephrectomy and only finally got off pain meds a month later. If I'd known how much pain I was in for I might have wanted to cancel the op!

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

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

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

Good luck with it Gary. I see you're doing sensible preparation and utilising the exc ellent resources available here in the form of first-class postings like Phoenix's. We have enormous advantages over the pioneers in being able to learn so much from others who've already trodden the same path.

I'm waiting to hear whether I can fall in line a half-pace behind you and I've been garnering info in the same way as yourself in preparation. If not now, I'll be on Votrient from 3 days time and so I'm gathering info on that too. If it's Votrient I guess I'll have different things to worry about and will have to add to my dread of middle age, the further hazard of my hair turning white ;)

foxhd's picture
foxhd
Posts: 2020
Joined: Oct 2011

...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's picture
Limelife50
Posts: 419
Joined: Nov 2011

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!!!!!!

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

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.

donna_lee's picture
donna_lee
Posts: 426
Joined: Feb 2009

Sorry there was mets when it was found, but 6 years out, I'm here to tell you that surgery and a baaaaaaad (that means positively good) attitude will get you a long way.
Keep on going.
Donna

NanaLou
Posts: 69
Joined: Oct 2011

I would also take with you some cough drops or hard candy. I developed a cough and very watery eyes both times on my way home. If it happens to you, you can take Benadryl. It helps , hopefully you won't get this side effect. Take some snacks with you. What ever you like to eat that is light on the stomach. I took jello and crakers. I did not eat much of it, but it is better to have it there than not have it. Because the Hospital food is bad. Drank plenty of water in the Hospital and when you get home. After the first round I wan't hungry when I got home for several days. I think not eating very much is why it took so long for me to feel better. It is a rough treatment, but it can be done. I did it. I am still itching, and my last treatment was on teh 7th. I hope you are already putting the lotion on now. They should give you some really good lotions in teh hospital. I wish you good luck and send many prayers your way. Keep us posted. I go back for my scans in December and get the results on 12-12-12. I hope the date is good luck!

one putt
Posts: 72
Joined: Sep 2012

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

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

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.

one putt
Posts: 72
Joined: Sep 2012

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

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

John, many thanks - that's the first info I've received on this pretty important question. With Toolman's confirmation below, in addition, I put the issue to my onc for discussion with The Christie. So far as I can gather, Prof. Hawkins has said that having Votrient first would not, of itself, disqualify me from IL2 treatment but that if that order of treatments were to be pursued they would need to be "very careful".

Of course I'm hoping that won't need to be tested and that it will be possible for me to get HD IL2 very soon, in which event I'll take to heart what Alice has said, below, about your experience with pruritis - something I fear and which, as a redhead with a thin and sensitive skin, I'm susceptible to.

Your explanation that IL2 is so tough that it's a good idea to get it while one is as robust as possible is what I've heard before. I'm disposed to doubt that prior therapies would make it less effective and I have info to the effect that a prior mTor might actually potentiate the effectiveness of IL2!

The speculation about heart attack risk has a certain inherent plausibility for me. It's certainly known that at least some cancer drugs are cardio-toxic, notably the old chemo mainstay doxorubicin (Adriamycin). [I wonder whether there's a table somewhere with data on the cline of cardio-toxicity of the various agents, or categories, at least?] Moreover, one of the major side-effects monitored for with Votrient is hypertension, whereas IL2 is known to induce hypotension. To switch abruptly between drugs that pull BP in opposite directions would seem to be counter-intuitive as a wise course of action.

Perhaps the direction of change - high to low BP - is critical, since, as your own case illustrates, Votrient AFTER IL2 is fine. I still cling to the hope that your previous IL2 treatment will have had some payoff in facilitating the activity of the nivolumab/pazopanib combo and I'm keeping my eyes peeled (ouch, that metaphor seems less appealing now!) for evidence to that effect, which I'll pass on when I come across it.

Thanks for the encouragement and I'm so pleased that your treatment goes on so well.

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

Me: Can I see what happens with Sutent first? (Before IL-2)
Ans: If on Sutent for longer than one or two cycles, may require non-medicated “wash-out” period of 1 mo.

IL-2 clinical trials were at that time limited to finer filtering of patients in the hope that they would have a higher success rate. I had actually taken a couple of Sutent pills which, though it didn't disqualify me from IL-2, one person told me my data wasn't being used in the trial results because the Sutent clouded the picture.

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

Thanks for that additional info Max - just shows how valuable it is to pay attention and keep notes.

I am alive
Posts: 229
Joined: Jul 2012

Tex,
My onc told me that IL2 is not effective for chromophobe. Does your sarcamatoid complication change that?

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

Here's hoping we now have the chance to find out! Did your onc cite authority for that proposition? If not, why not? Maybe you could ask her/him. I doubt whether there's enough data on IL2 for chromophobes to support such a bald pronouncement.

We do know that sarcomatous change makes chromophobe more amenable to intervention by chemo; whether the same might apply to IL2 we can't tell. However, we do have evidence that schRCC shows a promising response to Votrient. One of the mainstays on KIDNEY-ONC has sent me a paper in which this was demonstrated in a lady of 82 who had had a rad. neph, plus distal pancreatectomy, splenectomy and retroperitoneal lymph node dissection! [Tough old lady!]

So, one lives in hope. I hope that if I get the IL2 chance my body doesn't wimp out.

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

Cmon Tex i really doubt a yough old bird as your self would wimp out on a little HD-IL2,lets just hope you qualify so you can start to Rock And Roll

I am alive
Posts: 229
Joined: Jul 2012

Can't imagine your body wimping out, Tex, though anythings's possible, as we all know. My onc is a top RCC expert but I didn't ask him those very good questions you pointed out above because I was still rather stunned during the early conversation in which IL2 came up. I am happy to ask him to elaborate but I won't see him again until Nov. 20. The cancer center with which he is associated does not provide IL2 treatment. Whatever treatment path you choose will be the right path for you. I completely understand going for the possibility of a "cure" before embarking on any other systemic therapy. Why shouldn't you or any of us be among the lucky ones?! It's all such a crap shoot. Just thought I'd share my nugget of info for whatever it's worth. Good to know that sarcomatous chromophobe responds to Votrient. You know we're rooting for you!

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

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.

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

John;(One Putt wrote);
"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".

John, I was told the same from the director, and the resultant complication could be a massive heart attack if it was attempted, in the wrong order of treatments! That was enough for my wife and I. IL-2 it is, so that is where we are gonna start. I thank each and every one of you for the support, suggestions, and concern. We will be fine, and although I'm not inclined to add to this thread from the hospital, I will send an update when the demons have cleared from my head, after I'm released from the "psych ward"! LOL!!

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Alice, you are indeed correct about the Phoenix Rising post. Found it under the thread, "IL-2 here I come", dated Mon, 09/03/2012 - 12:48pm.

I will be entering the hospital tomorrow 11/4, and spent some time at the grocery store yesterday, stocking up on many of her suggested items. Started applying that Eucerin before bed last night. Good God, that stuff is oily and sticky. Maybe that's why it works so well.... YUCH! Bought an 8 pack of 12oz. Cokes, ginger root, some Healthy Choice individual bowls of chicken soup, , and veggie soup, w/snap on lids, individual fruit cups, also w/snap on lids, Danon Light & Fit yogurt, and Eucerin. Hopefully that will do.

On edit, I will likely be updating by 11/13 or so. Will just have to get my head screwed back on straight. Be well all.

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

Sounds like more tools in the toolbox of wupass that you are opening up for RCC, it will never know what hit it!

Hang tough,

Gary

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

11/11
Hi all! Well I'm still alive and kick'n, kinda sort-of. Round one is now behind me (made to 10 infusions then the Doc pulled the plug). Having been through this now, I REALLY gotta ask who invented this cruel treatment. As I sit here attempting to type, my feet and hands are swelled up like the Michelin Man, I have the bad taste and smell of the IL-2 in my mouth, sores on my gums, skin peeling on my face and shoulders, in spite of liberal Eucerin applications, zero appetite now for going on 4 days, insomnia, and the list goes on. I imagine the worst side effect was, and still is high liver levels and kidney creatinine levels more than twice what they should be. On Wednesday 11/14, the wife and I will be at the Dr's office, and I'm gonna be asking some cold hard questions, including why my one and only remaining kidney was put in harms way. At the moment, my inclintions are to NOT participate in the second round of infusions. There, I got it off my chest! I'll step down off of the soapbox now.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Toolman,

I just read your above post and then read it to John (who's been a bit under the weather the last few days). Your post flooded our brains with a bunch of terrible memories that I think we both have unconsciously tried to block. We do remember clearly Dr. Hammers describing IL2 to us as a "closely monitored intensive care Draconian treatment", and Draconian it was.

John experienced many of the side effects you describe. While he ate next to nothing in the first round, during the second round, he wouldn't let them bring hospital food into the room. The only food that went into his room--though not always eaten--was food from the outside that had some appeal to him. But he developed a phobia to anything served food/drink wise in the hospital or even available in the hospital pantry. Actually, today is the first day he has drank ginger ale since his February IL2 stint because it was a hospital drink.

He did not experience the liver and creatine spikes you had but did experience hypotension (low blood pressure) which confined him to the heart monitor and bed during the second round. It wiped him out to the point he couldn't start the second round until three weeks later, asking it be postponed and give him time to regain his strength. But he couldn't walk away from the tease of a NED outcome.

I'm not sure how your doctor will respond to the kidney/liver questions you ask but don't think your experience is uncommon. We (John and I) wish we could say the next round will be easier but for John it wasn't. But as terrible as it was, if you ask John today if he is sorry for going through it all, he will respond without hesitation, "NO." Going through it all was preferable to not knowing what could have been.

We're both wishing you the best whatever you decide. . .

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Toolman: At my place of work I'm known as the guy who deals with the 800 pound gorilla in the corner so here goes: I had two rounds of IL-2 and got pulled for high creatinine. My reactions were extreme rigors, high creatinine and generalized yukkiness. That being said, you took a chance on this treatment for it's 7% NED rate. You took a chance because you're married and your wife can't bear the thought of life without you. Your remaining kidney was put in harms way in the first place by the original tumor and any attempts to fight the disease are taken to extend your life. There's no way you started this therapy without knowing full well that you were headed down a very rocky road. The gum sores and skin peeling weren't a part of my IL-2 therapy but they were present during my other attempts at attacking this lovely disease. AND you still don't know what effect this first round has had on you. Are you a 7% person or maybe 15% significant response? Every day I look around and think of all the people in the world who have died since I was diagnosed and they didn't know they were going to die. I'm still here and so are you. We all face this disease in our own way and I'm sure the frustration of your fight was the motivation for your post. So unless your results on Wednesday preclude you from a second round you'll go back for another set of doses of IL-2. You'll do it because it is your best and only chance for a cure. You'll do it because you love your wife. And you'll do it because you are a man and that means you attack your enemies head-on. Good Luck and Take No Prisoners!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network