New Kid on the Block

foxhd

alice124 said:

update

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!!!

IL-2

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.

one putt

LIFE AFTER IL 2

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

alice124 said:

update

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!!!

6 week update Pt.II 1/14/13

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.

toolman1

one putt said:

LIFE AFTER IL 2

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.

2/8/13 Update

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 #12-000577, A 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

toolman1 said:

2/8/13 Update

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 #12-000577, A 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.

 

Update

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

alice124 said:

Update

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.

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

toolman1 said:

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.

Treatment

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

Texas_wedge said:

Treatment

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).

Back For More Abuse

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

toolman1 said:

Back For More Abuse

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.

Back for more

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

alice124 said:

Back for more

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. 

Update

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

toolman1 said:

Update

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. 

Update

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.