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IL-2 Update
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Apr 17, 2013 - 4:43 pm
Well, round 1 of HD IL-2 is behind me. Today is my 3rd day home. I managed to take 11 of 14 infusions. I took the first 9 in a row, then we had some problems with elevated billirubin. In fact, I turned a nice shade of orange. My natural billirubin reading is always high normal, so that probably has something to do with that problem. It's interesting that each day home seems to offer up a new set of side effects. Monday and Tuesday were all about peeling skin and itching. Today, it feels like I'm getting an infusion again with the nausea and flushed skin feelings. Overall, it's not so bad. I'm just hoping for good results. I start round 2 next Tuesday, April 23rd. --David |
Joined: Nov 2011
IL2 update
Doing well David - you're just the man for it. I've got a feeling that you're going to be a complete responder. Do us all proud!
Joined: Mar 2012
IL-2 Update
David,
So glad to see you're home from round one and you're feeling reasonably well. John and I have been wondering how you were doing in the wake of the treatment. Try to get lots of rest before next round. I know that was a challenge for John. Treatment left him with a raw edge that made sleep/rest difficult, intensified by the peeling and itching.
Positive thoughts continue to bullseye you from Baltimore. Take good care of yourself and keep us updated!
Joined: Oct 2011
Awesome!
Good Work. Glad you did so well. Get some good rest and be ready for the next one. You know all the side effects will go away. You are well prepared.
Joined: Nov 2011
Great
Good going David,i am also hoping for those good results
Joined: Feb 2013
Good job..HD IL2 is a
Good job..HD IL2 is a bugger...hydrate and rest in this short break time...keep lotioning..You are doing great :D
Joined: Jul 2012
Re; IL-2 Update
Having been down that same road, last November, (2012) for my 2 rounds, I was SOOO relieved to be out of that hospital room. The first round (11 infusions) went fairly easily, and the side effects weren't too terrible, (itching was the worst), but after the second round, (7 infusions), my wife couldn't get me outta that hospital fast enough! I was miserable. Had massive skin peel going on EVERYWHERE, (yea, even the private's region), and all the Eucerin in the world wasn't relieving the never ending itch. My Oncologist was truly inspired, telling my wife and I that when patients had such a massive response to the IL-2 treatments, it was usually a good sign that the treatment would be a success. He also prescribed Hydroxyz HCL 50 mg to combat the itching. It wasn't until the first 3 month scan that the realization hit us all, that for me, the treatment had no impact on any of the mets. GRRRR!!!! And even then, the peeling and itching was still present, mostly at the extremities, (feet and hands).
The ONLY anatomical improvement for me was, that I had been treated for decades for a scalp condition called Seborreah (sp?), which miraculously, cleared up, and hasn't returned as of yet. I'm certain that my dermatologist is wondering where I disappeared to. So stay strong my friend. We all are fighting a common foe! Gary
Joined: Nov 2011
Thanks
Thanks everybody. I'll do my best to make myself and the group proud!
David
Joined: Nov 2011
IL2
David, we know you'll do your best and I'm sure you will succeed.
Joined: Jan 2013
I am right behind you!
Starting IL-2 May 14th. I will be following your process, if you don't mind. I have not posted in some time. I had to take a detour for radiation to fix a problem before I could start IL-2. Good luck David! Lou
Joined: Nov 2011
May IL2
Lou,
I know about those detours before starting IL2. I didn't think I would ever get started. I'm more relaxed heading in to round 2 because a lot of the "unknowns" are now knowns.
Best of luck to you and I'll be glad to try to answer any question you may have.
--David
Joined: Nov 2011
Round 2
I'm home after round 2. I managed 13 of 14 infusions this time. I had a couple of bad days of itching and peeling but that has passed. I don't think the peeling will stop for awhile. I'm tired and brain dead but I'm carrying on. I gained 14 lbs. which is a freak- out moment for a cyclist but that should go away soon, I hope. Alice, I think I'm different from John when it comes to food. I'm starving all of the time. And it's good to get home and have a proper cup of tea!
--David
Joined: Nov 2011
Round 2
That's a fantastic performance David. More power to your elbow! That athleticism is standing you in great stead, isn't it?
Glad to hear you're back to enjoying a good cuppa.
Joined: Oct 2011
Yep, knew you would do it
I feel the same as Wedgie. Being an athlete isn't all about being physically strong. It is having learned how to dig in and tough it out. You are proving that now. I wonder frequently how I would respond to the treatment. I'm impressed. Keep doing good. I'm pulling for you.
Joined: Mar 2012
Way to tough it out David~
Wow, that's impressive David -- 11 out of 14 and then 13 out of 14 -- and still hungry. I think that ravenous appetite is a wonderful and positive sign.
Will be anxiously waiting with you for the scans!
Joined: Nov 2011
Thanks!
Thanks everyone. Your support means so much to me!
--David
Joined: Jan 2013
Following your updates
Following your updates and glad you are doing well. Wishing you the best on your results and next round of scans! I'm starting IL-2 at Vanderbilt on Tuesday. Wish me luck.
Lou
Joined: Nov 2011
Good Luck!
Lou,
The IL2 staff at Vanderbilt is wonderful. The nurses will look out for you. They have a strict protocol
they follow and they know what they are doing. It will be difficult at times, but you can do it. I'll be thinking about you and I wish you the best.
David
Joined: Mar 2012
Tagging Along
Lou,
Just want to mimic David's good wishes as you begin your journey tomorrow. While it's a tough treatment, as David says, the facilities such as Vanderbilt are so proficient and professional, they put you at ease. Good luck. Will be waiting for the positive results to follow!
P.S. Curious about your picture??? I had a similar look a few years back when I was put behind bars for a fund raiser and had to raise bail money for charity.
Joined: Jan 2013
Thanks for the well wishes
Thanks for all the well wishes. Alice about my pic, you guess it, MS fund raiser a couple of years ago.
Joined: Jan 2013
9/14 first round
Week one done. Got 9 of the 14. Never a dull moment, went into Afib on #8, stopped. Fixed it and rested one day and took 2 more doses. It' true, it's true! Was does not kill you makes you stronger.
Starting week 2 on Tuesday wish me luck!
Joined: Oct 2011
Good luck!!!!!!!
I just got a chill. Good work. Boy, I really like tough women. I knew you would prove it to us. Amazing how strong we can be. They will need a cage to keep you away from completing the treatments. we are pulling for you. We do this together.
Joined: Oct 2011
Good luck!!!!!!!
I just got a chill. Good work. Boy, I really like tough women. I knew you would prove it to us. Amazing how strong we can be. They will need a cage to keep you away from completing the treatments. we are pulling for you. We do this together.
Joined: Jan 2013
Thanks fox!
Thank you all for your encouraging words. And I can not say how helpful all the information on this blog is, I am a need to know person. This place truely helps me prepare for each round of the battle. Thanks again all.
Joined: Mar 2012
Wishing you luck+
Surrounding you with positivity and good wishes as you start week two. Stay strong and fight hard. You can do this!!!
Joined: Nov 2011
Round 1
Hi Lou,
Glad to see you have week one behind you. You're tough! Week 2 was hard but it was easier in some ways because I knew what to expect. One thing that happened to me in week 2 was massive skin peeling. You may have that to look forward to. You've proven you're tough, so you can handle it!
Best of luck and I'll be thinking about you like I was on this round.
--David
Joined: Jan 2013
Week 2 Done.
Ok. This is day 3 home from my week 2. It did not kill me. yea.... (Only felt like it.) Got 8 this time. Stop go. Stop go. Blood work all over the place. Mike same here, massive dry skin and peeling. Still itching and lotioning. Starting to feel better today was able to eat breakfast. Now for the wait on scans in mid July. Wishing the best for you on your upcoming scans Mike.
Joined: Mar 2012
Way to go
I feel your pain Lou (and David). That itching and peeling that come from the IL-2 are brutal; I watched how miserable it made John. And it's not a nice memory. In fact, I'm reaching for the skin cream as I respond here. But you both have proven you're tougher than the enemy you're facing and I'm betting you come out on the winning side of this battle. Keeping fingers and toes crossed. You both rock. Stay strong and determined and feel all our support behind you!
Joined: Nov 2011
Time To Rest
Lou,
Glad to hear you have round 2 behind you. Great job on getting through it! The itching and peeling are tough but they will pass. It's time to relax for a few weeks. Dr. Sosman told me recovery time is 5 weeks. I felt good enough after 4 weeks to get back on my bike. I've been riding most days lately. I hope you feel strong soon too and I hope IL2 is a huge success for you! I have my scan on Monday at an in-network facility, then I see Dr. Sosman on June 18th to see what's next. Thanks for the nice thoughts and well wishes. I'm sending them right back at you.
Alice, thanks for being so kind as usual. It helps as my scan date approaches!
--David
Joined: Nov 2011
Time to rest
Lou and David, congrats to you both - keep up the good work! I hope the upcoming scan confirms all going to plan David.
Joined: Nov 2011
Thanks!
Thanks TW! I'm hoping for the best.
--David
Joined: Jan 2013
Hoping for the best!
David, thinking of you today. Hoping that you got a good report from your scans. I know that the waiting is hard. I go for my scans on July 15th. Wondering what is next.
Joined: Mar 2012
David and Lou - IL 2 scans
Lou - I'm posting under your note to bring the post to the top and let David know we all join you in thinking of him and wondering how his scan went. David -- Hope you're just away celebrating the good news scan!!!
Also sending positive energy your way--Lou--for your upcoming scan.
Joined: Oct 2011
Joining in Hoping for the best
David,
I just want to let you know I am joining Lou and Alice in Hoping for the best. I have been thinking of you all week long. Right now I am on my way to walk in Relay of Life. Take care and hope to hear from ya soon.
Nancy
Joined: Nov 2011
Latest
Thanks for thinking of me everyone!
I met with my IL-2 doctor this week. It's sort of a long story but here goes. I had my scans done the week before I went to Vanderbilt for insurance purposes. So, I knew the results before I went to Vanderbilt. The results weren't good. All nodules had grown.
It was a little frustrating because my doctor at Vanderbilt had a hard time viewing the scans from the discs I brought with me, so he was going more on the radiology reports than the scans. He said he thought I had minor growth, so he wants to wait 4 weeks and do another scan in case there is a delayed response. He says the new scan has to show shrinkage (stability won't do) or we won't continue IL2. I'm supposed to contact him next week after he studies the scans more to see if he still wants to proceed with this plan.
My oncologist at UAB (local) says there is no way he can get another CT scan approved with insurance with such a short time span between scans, so I'll have to get it done out of network (maybe not covered at all) by insurance at Vanderbilt.
So, we thought we were going to get a definite answer last week, but we're back in waiting mode for 4 weeks.
Thanks again for thinking of me, David
Joined: Feb 2013
hoping the 4 weeks bring good news
Waiting is tough..but we are all here waiting and hoping and praying with you..please keep us updated!
Joined: Nov 2011
Scans
Really sorry to hear about this situation David and hoping and praying that the next scan brings good news. We're all sharing the wait with you to shorten it for you and willing that good result!
Joined: Mar 2012
Latest
Let's hope that the next scan shows marked improvement, but--if it doesn't--has your oncologist mentioned possible next steps -- Votrient/Sutent or trials? I would love to see you get in a nivolumab trial; sure wish I could distribute them to all my dear friends on CSN.
Just keep in mind there's belief by some ocologists of a latent benefit of IL-2. And considering how well John has done, I believe it.
Now I am going to share a totally unscientific observation that can probably be blown out of the water by people on this board much smarter than me. But I consider you a friend David, and I'm going to go ahead and share it. When you were able to take the high number of IL-2 doses, I was a little concerned. If my memory is accurate, you and John hold the record on this CSN board as far as IL-2 doses (24 and 25 respectively) in recent years. I even searched out other sites to satisfy my curiousity and you guys pretty much hold the lead spot. During the first round when John did the entire 14 doses, he had doctors galore stopping by and shaking the "IRON MAN's" hand. Many of them mentioned he was the first person they had known to do the entire 14. While this was encouraging for him, I remember on numerous occasions when this was going on, I'd ask the doctor. "Is this good?" And the answer I would get everytime would be, "it's remarkable" or "it's extraordinary" but never did they say it "was good" for his response chances. The doctor's responses combined with their disconcerting expressions suggested to me that it meant just the opposite. I never shared this with John until after his treatments were over, but in hindsight, I think he saw it too. I've never seen anything in research equating IL-2 success with IL-2 dose tolerance, but I would be interested to see if my limited observations hold up on a larger scale.
On the up side, the IL-2 may have you set up to respond completely to the next treatment. Or maybe the four week scan will be better than expected. I certainly hope so.
Lou - this is in no way meant to discourage you. It appears to me (in my totally unscientific formula) that you're on course for complete response!
David - You're way too tough and too much a jock not to beat this thing. I'm confident your success is just around the corner. Know we're all proud of you and squeezing your hand in support.
Joined: Nov 2011
IL2
Hi everyone,
Thanks for joining me with encouragement on this crazy journey. We'll see what happens on the next scan. Alice, I know what you're saying and it very well could be. Some days I think I'm beginning to understand RCC and then the next day I say what the heck. I don't know what to think.
It looks like Votrient will be the next step if IL2 doesn't work. They do have the 4 arm Nivolumab/sutent/votrient/yervoy trial in Nashville. I talked to them and my insurance company about trial finances. My initial contact with BCBS showed that they won't cover trials. I talked with the trial group and it looks like I'd have to pay for more than I can pay for. I haven't given up on it yet, but it doesn't look good.
My IL2 doctor has one of his melanoma patients in the trial and he (doctor) was very concerned about the toxicity of the trial. He told me they were currently not taking patients there at this time. He said they may be taking more people in the trial in 4 or 5 weeks. He is at Vanderbilt and the trial is at the Sarah Cannon Research Institute in Nashville. He also said Nivolumab may eventually replace IL2.
I'll be at the next crossroads on July 23rd.
David
Joined: Nov 2011
Hi David
Heres hoping you get some positive news on the 23rd
Joined: Nov 2011
Lou - Good Luck
Hi Lou,
I think Monday is your big scan day, right? I hope you have great results. I'll be there the following Monday for my 4 week 2nd chance scan. I'll be thinking about you on Monday.
David
Joined: Oct 2011
been wondering
How Lou has been doing. I hope to hear before my follow up scans.
Joined: Jan 2013
Wondering
Yes, got scans on Monday and results on Tuesday. Looks like I have some nodules that look smaller. The words for the report " Some of these nodules have diminished." Mostly in the right lung, left lung nodules not significantly changed. No growth noted. I'll take it! More scans Aug 20th to make sure we are still moving in the right direction. Maybe 1 more round of IL2. More waiting....
@ David, I continue to expect good things for you! Best of luck on Monday.
Thanks for the continued interest and support.
Joined: Mar 2012
That is great Lou! I hope the
That is great Lou! I hope the new scans show more improvement! Diminished means GONE! Whoo hoo! You are one tough cookie, show cancer who is boss! You da girl!! ;)
Joined: Oct 2011
Give me a target
To aim for Lou. Glad you are doing better. This IL-2 sure is fun. Isn't it?
Joined: Nov 2009
Atta girl!!!
Way to go Lou, at this rate you'll be out of that cell in no time, CONGRATS!!!
Joined: Feb 2013
Super!
Progress is progress and progress is GOOD!
Joined: Nov 2011
Hooray!
Lou,
That's great news. I'm super happy for you!
-- David
Joined: Jan 2013
Any news?
Do you have any news on your path ahead? I go back for scans on Aug 20th. Hoping the best for you.
Joined: Nov 2011
The latest
My scan on Monday showed stability. No new nodules or further growth of existing nodules. That means since IL2 treatment started, I have had minimal met growth. That's good news but it's not good enough news to warrant additional IL2 treatment.
My oncologist recommended, since we have stability, that we scan again in 2 months with no treatment in the interim. He said we shouldn't jump into Votrient treatment when we have stability. He wants to ride the stability as long as possible before starting new treatment. I have an appointment with my oncologist at UAB tomorrow to discuss this plan. It makes sense to me.
I look at it as the second best news I could have gotten yesterday. Shrinkage is better than stability but stability is better than growth. We'll move on with it.
Best of luck to you on your scan Lou!
--David
Joined: Nov 2011
Not rushing your fences
That sounds like a good plan to me, David. Keep up your usual excellent lifestyle meantime and, who knows, with what we're still learning about IL2, the next scan might well show continuing benefit from the treatment. It would be intriguing if your high level of fitness coupled with the boost your robust immune system has got from the IL2, showed good results at the next scan. If so, I wonder whether there's a chance they might re-appraise the possibility of your having a further shot. Here's hoping! Otherwise maybe I'll be welcoming you to the Votrient club!
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