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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.

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Gordon, Nice! Excellent perspective on dealing with this. Toolman, if you can, stick to your original committment. We are behind you whatever choice you make.

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

11/18 began the second round of IL-2. I was at 7 bags, and the Dr. pulled the plug, feeling that I had had enough (probably due to high liver potassium and (high 2.8?) Creatinine levels, in the 1 remaining kidney. From that point on, my hospital stay was determined by the Dopomine levels that I had to be weened off of, which took about 2 full days.I was released on Fri 11/16 and already was suffering from blisters on my back, and chest, and major skin peel on my upper torso. Once at home, the wife immediately began drenching my skin in Eucerin lotion, and the Dr. had given me a Rx of Hydroxyz 25 mg. to stem the tide of skin irritatation (itching). So, here I sit, weakened from the process, skin fried and peeling, from the chemical response, and who knows what is going on inside my anatomy. Hopefully there is a plethora of wonderful things going on, to kill this disease we all know as RCC. That's about all for now folks, and I'll step down from the podium at this time. Thanks for being here, and being my sounding board. Luv all of ya! Gary

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

You went as far as you could go in the second round,hope you are feeling better in the next few days and i am hoping you got some favorble results from all of this.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Way to go Gary. While I hoped you had gone in for round two, I wasn't sure until now. Last time I saw your post you were pretty down and pissed.

Like you say, "Hopefully there is a plethora of wonderful things going on, to kill this disease we all know as RCC." And soon you'll find out. Much better than going through your life asking, "what if"? Congratulations for toughing it out and good luck on future NED status.

Can only guess based on John's experience how miserable you are right now, but you don't strike me as some one who can be kept down long. Once you're stronger, pat yourself on the back for seeing it through. We're proud of you!

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

Well said Alice - we are that, Gary, and I share the hope that it's going to prove to have been well worth it.

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Boy,! Great job Toolman! I can only imagine how difficult this treatment is. So proud. I have determined that dealing with the difficulties and side effects of our cancer treatments are necessary evils. You have proven to be another taking this disease head on. You will recover from session and have given it your all. My hats off to you.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Sorry, I've been a bit slow on the uptake. I applaud your bravery, Gary. I pray that you are one of the lucky few who get a total response to this treatment! Hang in there and kick butt my friend!

Love, Paula

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

Yet another sleepless night. As if the IL-2 treatment wasn't bad enough, or the associated after effects, today we find out the results of the IL-2 treatment. I was at the USC Norris Cancer Center, last Wednesday for Lab samples, and CT scans, so everything SHOULD be in order. I've got all my fingers and toes crossed tightly.

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

Hi Gary,

Good to hear from you and glad things seem to be going "relatively" well.  Here's hoping the IL-2 is doing its thing and you get positive results today.  I'll cross my fingers and toes for you too.

Gary

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

John and I have thought about you often in recent weeks and sympathized with what we guessed you were undergoing. Keeping our fingers and toes crossed too  for a great report. Don't keep us waiting too long!!!

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

You da man! I still see IL-2 in my future. My wife thinks I should have tried it initially. We'll see. I've got to be an ideal candidate.

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

Just returned from Doc's office. IL-2 treatment had zero effect on existing mets, and a couple have actually increased in size, but only by minimal amounts. The really discouraging part is that there is a new met on my liver that measures 1mm, and is too small to biopsy. Dr. Quinn just learned this AM about a new clinical trial that will be taking place soon at UCLA, and entails some sort of immunotherapy, where vials of the patients blood are removed, and treated to become super renal cancer fighters. (He mentioned a clinical process name, which I haven't the faintest idea what it was/is called, but will get the name ASAP, and post it here). He also suggested a couple of other treatments, one of which was Votrient. He wants to learn more and talk with the folks at UCLA, then will get back to us. In the mean time, I got my flu shot today, and the Zometa treatments will resume later this week. So...... in a nutshell, stay tuned. Thanks for listening everybody. Gary

Also, for those on this forum in the Pennsylvania area, my Dr. Quinn just received an e-mail today, warning of a "brand new" strain of the flu in that state, that as usual is very dangerous to youngsters, but also, very dangerous to cancer patients, more so than any of the current flu varieties. Check with your Dr's folks! That's all.

one putt
Posts: 72
Joined: Sep 2012

Gary, Sorry to hear the news about your test results. Been there done that doesn't help the way you must be feeling at this moment. However, as disappointed as we were to get the news you got today, there are other options available to get you on the road to defeating this disease. There is a train of thought that believes the latent effects of IL 2 are helpful or enhance other treatment modalities. I'm not sure if that's the case with me, but I've had excellent results so far in my MDX-1106/Votrient trial. I feel the best I've felt since I had my kidney out 11-01-11. Hopefully, you will experience the same thing in your next treatment. I'm intriqued by the trial you mentioned that uses your own blood,and I intend to ask my Dr. about it when I see him this Wednesday. At the risk of sounding trite,good luck to you as we soldier on in this battle together. Keep us posted.

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

Went up to USC's Norris Cancer Center yesterday, for 6 mo. follow up visit with Urologist/surgeon, and received a clean (?) bill of health from her. Unless I have a relapse or find myself in need of additional urological surgeries, I need not see her again. As I was walking down the hall, I ran across the Norris director, (Dr. Quinn) and his asst. and I asked whether or not he had learned any additional information regarding the new clinical trials @ UCLA. He will be referring me to a Dr. Fairooz Kabbinavar, @ UCLA, whom heads up this new clinical trial that goes by the name of (A PI Initiated Study: IRB #12-000577A phase I, open label, dose escalation and cohort expansion study to evaluate the safety and immune response to autologous dendritic cells transduced with Ad-GMCAIX in patients with metastatic renal cell carcinoma). I have an appointment with him for Mar. 4, 2013, so once again, stay tuned.

 

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Glad to hear you've been given the green light from your Urologist Surgeon. Will anxiously await to hear news about the PI Initiated Study: IRB #12-000577. Hang in there Gary; new and better treatments keep on coming.

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

3/19/13

Went to UCLA Urology dept, yesterday, to discuss the possible inclusion in the  PI Initiated Study: IRB #12-000577, with Dr. Kaabinovaar (sp?). After he studied all the labs & CT disc's for the past 4 mo. he would rather see us, (me), return to my regular oncologist, and pursue a treatment of Votrient for a while. His explanation; the clinical trial is brand new, and although he knows the drug has worked excellent in rats, it has not been tried in humans. Thus far he has only one patient in the trial, and a second will begin next month, and I would have been the third. He feels there are established drugs out there right now, that have a proven track record. Had I already tried several of those with negative results, then he might reconsider. So tomorrow, we're back @ USC Norris Cancer Center and see what transpires.

BTW, has anyone out there that has/is being treated with Zometa, had a side effect of dry/itchy annoying cough @ night? Just curious. Stay Tuned.

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

It's good to see the best interests of the patient being accorded due primacy.

Some of us are doing well on Votrient, Gary, and there are many more trials to be had in the future (in the States, at least).

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

Saw our Oncologist 3/20/2013 and reviewed the previous weeks labs and CT scans. The purpose of this visit, was to (A) review the information that the Clinical Trials Dr. @ UCLA had given us, (see post above), and then (B), to put a plan together for the next step of treatment. Our Dr. Quinn had considered several available treatments, and settled on Inlyta, because it shows a very good success/response rate, after having been through IL-2 with negative results. So @ nearly $10K for a 30 day supply, and a $1900 co-pay, we had to search for some co-pay assistance. That, in itself proved a challenge, but as of 4/15 we were successful and I received the first month's supply of Inlyta yesterday. Today, I will be picking up some other prescriptions and over the counter products from the pharmacy, that will be a smaller portion of this treatment, and calling the Oncologist's assistant for further directions and to schedule an office visit 2 weeks from now. So, as I usually end a post....... stay tuned. Gary, out.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Gary - I really wanted to start this response with a joke suggesting you might be one of those men that likes ABUSE, but when I got to the cost/co-pay part of your post, the air came out of the balloon.  I sympathize with the challenge of covering these drug costs,

But hopefully the Inlyta will be the pill to provide shirnkage and improvement at least until you get into a treatment/trial that's even better.  Personally speaking (with no medical knowledge) I would love to see you eventually get in one of the Nivolumab trials. But then again if Inlyta is your magic bullet, perhaps you won't ever need another treatment/trial.

Here's to success and the power of positive thinking. 

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

Copied response to aazbell question re; Inlyta;

 3/21/13 my Oncologist started me on Inlyta (5mg) twice a day.The first 3 weeks went by without incident. By the fourth week I was already at my GP Doc's nearly every other day, while he tried to catch up to the blood pressure issues. It was always high (203/101), then muscle pain throughout my back, chest, and neck which caused a low grade headache 24/7. The last straw was yet another visit to the GP Doc. with extreme shortness of breath, profuse sweating, and extreme dizziness. The staff took one look at me and asked if I was OK, or if I thought I might be having a heart attack?. I told them absolutely not, and that I felt like S**T, so they immediately got me into the exam room, gave me 325mg. aspirin, a nitro tablet, and shipped my rearend to the ER, next door. Once there an EKG was performed as they took a good look at my aortic valve and aortic artery. Both were said to be in great condition. My GP contacted my Oncologist, whom immediately stopped the daily Inlyta program. Before leaving the medical offices, a couple of blood vials were drawn and a urine sample were sent out for evaluation. Next AM, GP Doc calls, and says get my A** into his office STAT! Once there, he shows me the blood work results, and a normal thyroid level of 0.0-0.3 stands out vividly @ a 12.2. So his assistant is requested to bring him a "cocktail " mix of 5 different drugs, and has me swallow them, ASAP. I left his office with a fistfull of prescriptions, and was told not to even consider driving for several days.

 That was 3/10/13, and as of today, I feel much better, am sleeping thru the night, the muscle aches have abated, and this coming Wednesday, have an appointment with the Oncologist to hopefully put a better plan of attack together. He may also receive a piece of my mind!! On the last visit with him, I directly asked him about the liver and thyroid levels, and he matter of factly told me they were "elevated slightly", but there was "nothing to worry about". That sort of answer just won't fly any longer.

Further Updates; 5/23/13

Visited Oncologist @ USC's Norris Cancer Center, and presented him with the ER report and EKG results, from the previous week. When asked whether or not other patients had suffered similar symptoms, he said "not really", and that all people respond differently to drugs. He perused the mornings lab results, and decided to let my body fully recover from the first battery of Inlyta, then he might consider a lesser strength version of the same drug, or possibly consider a different product. I again asked about the Thyroid levels, and he had to contact the lab to include a thyroid panel work up. As of this AM 5/23/13, I am awaiting those results. 

  Sorry this reply got so long, but I can't stress strongly enough, to stay on top of ALL the numbers that are supplied in a blood work sample. Hopefully you won't end up in the ER like I did. I'll step down from the soapbox now. Gary

And thank you Fox for you're reply over @ aazbell's thread. 

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

It's been disheartening to hear what a hard time you've been having of it, so correspondingly welcome to hear that things are improving.  It's just as well that you're such a tough SOB!   I don't think you've been getting the quality of care you both need and deserve.   As I've put it before 'it's their living but it's your life'!

Your advice is sound and your experience demonstrates how important it is to be your own advocate and not just a passive observer of your treatment.

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