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It's a green light for PDL!!!

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

GREAT NEWS FROM MINNIE!!!! I qualified for the PDL trial and I am going to Nashville on Tuesday 10/16. Labs and scans on Tuesday, treatment on Thursday AND the protocol has changed! I can go home on Thursday and return in 3 weeks for another treatment! Hooray!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Paula.. WHAT EXCELLENT NEWS!!! Oh how happy I am to hear ALL OF IT! Thank you so much for sharing! I know you will do well! I wish i can get my mom on one of these trials in NY! Looking forward to good news soon! Let us know how your scans turned out as well. xxoo

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Way to go Paula!!! Didn't you get the green light earlier than expected???? You must already be teachers/doctors pet!

Now to show them how to kick butt! You've got a huge cheering section; show us how it's done.

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

And you were worried...me and fox would have done some persuasion biker style if they turned you down...glad that wasn't necessary.

I can't tell you how excited I am for you, you must be on cloud 9. I know you will have good results, I'll be talking to the big guy upstairs to make sure.

Now we just gotta find something that works for TW.

Congratulations,

Gary

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

)( ,that's you on the left after I gave you a big ass Fox hug!!!! We sure do share our experiences on this board and I'm smiling like you can't believe! I'm so happy! Do us proud Paula dear! Blow their minds with your positive attitude. AWESOME!!!!
Love you more! Fox.

jam66
Posts: 55
Joined: Jun 2011

Go PJune! I can't wait to hear about how you'll blow them away! You're going to be awesome! Here's to positive thinking...

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

Another member of your cheering section turning up, not for duty but for the real pleasure of wishing you well and looking forward to the excellent results you deserve and that we're all confident you'll get.

Now you really are joining the ranks of the Titans, Paula and we'll have another icon like Fox to follow. Maybe that vision of the two of you skipping hand-in-hand to NEDland wasn't so fanciful!

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

You know how bad I want to go there!!! I am truly excited. In the past few days I have found myself "circling the drain"...a putrid combination of despair and frustration. This is a banner day for me. The research nurse told me I am a responder and the drug company wants me to start right away. Music to my ears. Going up there on Tuesday for scans and labs and more consent forms. (Do they HAVE to list all the possible side effects???) Turns out I am not in an escalation group, nor am I one of the first 10 patients in a dose-expansion group. I feel very snug in my little group. No extra blood tests, and so it seems safer. And they are letting me leave to come home on the day I have my first treatment. Pretty comforting, I must say.

The fight has just begun...I'll try not to let anyone down. I want to be a Titan. And skipping into NEDland with Fox is my goal. The only thing that would make that better is if we could find a few more of you to join us!

Tex, waiting anxiously for your appointment on Friday. Wish you could qualify for this one with me. I'd love your company!

Love,
Paula XO

donna_lee's picture
donna_lee
Posts: 400
Joined: Feb 2009

Way to go, girl.
And when I watch some of the current TV shows-"Idol","The Voice", etc., I just want to whap a few of them up side the head. Cuz,"I'll just die if I don't get to the next round." They have no idea what others go through to avoid that phrase.

Say Howdy to Tennessee. Our good friend is there this week watching his granddaughter play volleyball in Clarksville.
Good luck on all the prelim works-ups and pass your tests with flying colors.
Donna

tacyarts
Posts: 73
Joined: Apr 2012

I'm so happy for you, there is nothing like having a little hope to combat the dispair. I'm praying for you as we'll as everyone else in our little group, good luck.

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

Paula, I suppose I wouldn't qualify, would I? 70 in a few days time but very fit; however, metastatic, sarcomatoid chromophobe might rule me out? Can you point me to the number of your trial, or any others of like kind you've come across that may be recruiting?

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

http://clinicaltrials.gov/ct2/show/NCT01375842

This is the one I got into. It's like the PDL trial that Fox is in also.

TW, I don't see any exclusions written for this, so it might be worth an inquiry. The other trial I was considering is:

http://clinicaltrials.gov/ct2/show/NCT01391143

The second is a monoclonal antibody trial. Both were recommended by Sarah Cannon Research Institute, my oncologist, and my son's oncologist friend at Duke.

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

I'm all too conscious of the fact that in the past few days I've neglected to reply to many friends here who have sent me kind messages and valuable information. I've been tied up in a long-running, ultra-bizarre and fascinating legal action. So, I've been in Edinburgh by day and in Discomfort by night, leaving me not enough time, in particular to do justice to the academic papers that have been sent to me. I've also just been given a boatload of further information, so it'll take me a while to respond appropriately.

Meantime, my thanks for recent messages go to at least Clara, Peg, Paula, Kathy, Ange, Alice and David for helpful messages and info.

We went to meet my oncologist yesterday. She is young but very impressive, her specialties being renal and lung cancers. She is also easy on the eye which is good news since she says she will be seeing me often, monitoring my blood pressure etc, if I go with her rather than seeking treatment that she isn't able to offer in this neck of the woods (Scotland). Staying here has a lot of appeal but I'm looking at other possibilities.

As I've said above, I've had a lot of help here and will, I'm confident, get more once I've nailed my colours to a particular mast. For the expert opinion over there, I've asked for additional help on KIDNEY-ONC, where I summarised my present position like this:

"Not many weeks ago I was considered NED, now following a further CT scan and a quick follow-up PET/CT I appear to be pT4 N2M1 with parameters that some of the 'survival' nomograms won't even accommodate as inputs, and a new tumour developing at around 100 x the typical rate of growth for RCC. I appeared to have been met-free at dx but it now looks as though I probably had undetectably small mets which, due to transition into an extremely aggressive histology, have manifested in a second renal bed recurrence and, more menacingly, compromised lymph nodes, suggesting the possibility of distant mets any day now. The team whose care I'm in (at a Hospital which is one of the top 3 cancer research centres in the World) have decided against the third op that I was hoping for in favour of passing me over to the renal oncologists, one of whom I'll be seeing in a couple of hours time.

So, with highly aggressive, metastatic, necrotic, sarcomatoid chromophobe RCC and the expert judgment that just further surgery would be fiddling while Rome burns, I'm contemplating best next moves. Thoughts, please (other than 'Get your affairs in order', which I've embarked on). I'll maybe post what the oncologist outlines in the hope of gleaning some expert comments here since there's more expertise here than probably any single doctor could dream of possessing. It would be useful to have a list of the questions that my Wife and I will inevitably have forgotten to put."

I think I put all of the main questions and got good answers from my oncologist. We're meeting again on Friday week after each gathering further data, to decide how to go forward. She has written to the UK's great IL2 expert to see whether that might be a possibility, in Manchester. Here, she could offer me either sunitinib (Sutent) or pazopanib (Votrient), to start straight away. She hopes that this would achieve some shrinkage or stability of the new tumour, which will otherwise keep growing and is probably already virtually inoperable - not a pleasant scenario to contemplate.

There are no trials that would take me in in Scotland but we are investigating possibilities in England, Europe, the USA and Canada.

It may be that at 70 and with a rare sub-type, I'll be deemed unacceptable for Il2 or I might fail the cardiac and other performance tests (though I think that unlikely). If so and I don't find a suitable trial I'll probably go with Votrient in preference to Sutent, for its usual better tolerability. Even if it's marginally less effective than Sutent, the idea would be to play to my strength and go for the one that would permit me to lead as close as possible to my existing lifestyle in the hope of maintaining my strong immune system. The same logic would count against chemo. No-one would lightly dismiss the opinion of the excellent Janice Dutcher, who favours chemo for sarcomatoid cases but I'd rather avoid the scattergun approach of cytotoxics which would undermine my best defence - my immune system.

On principle, I would favour an immunotherapy but I don't think that there's a record of IL2 showing good results for sarcomatoid chromophobe, but that's chiefly because it's so rare that there are virtually no data. The best alternative would, in theory, I believe, be a PD1 or PDL1 such as Fox and others here are on and Paula is embarking on, ideally in a combo with another agent, such as the trials John and tacyarts are on, with a PD1 + Votrient or Sutent, or even one of the chemos, like doxorubicin or gemcitabine, or possibly a newer agent like cabozantinib.

My plan now is to review IL2 data, using the experiences of members here and on ACOR to do a crude cost/benefit analysis, in case I have it on offer, and checking if it looks at all likely to help sChRCC. Also to look for any trial opportunities anywhere that could be feasible. Otherwise go with Votrient backed by mind-body medicine approach.

If anyone is able to warn me about possible pitfalls in the way of taking a path that then precludes other treatments, I'd be eternally grateful. Fox is my big hope, after his hard won experience, for educating me on possible dangers there.

Thanks everyone. What goes around comes around and I've contributed here so I'm not embarrassed to take any help now that my friends here can give me.

ClaraW
Posts: 64
Joined: Jun 2012

Dear Tex,
Have you read this paper?
Pilot trial of interleukin-2 and zoledronic acid to augment gammadelta T cells as treatment for patients with refractory renal cell carcinoma.
Lang JM. Kaikobad MR. Wallace M. Staab MJ. Horvath DL. Wilding G. Liu G. Eickhoff JC. McNeel DG. Malkovsky M.
Cancer Immunology, Immunotherapy. 60(10):1447-60, 2011 Oct.

ClaraW
Posts: 64
Joined: Jun 2012

2 more articles:

1. A pilot study of denileukin diftitox (DD) in combination with high-dose interleukin-2 (IL-2) for patients with metastatic renal cell carcinoma (RCC).
Atchison E. Eklund J. Martone B. Wang L. Gidron A. Macvicar G. Rademaker A. Goolsby C. Marszalek L. Kozlowski J. Smith N. Kuzel TM.
Journal of Immunotherapy. 33(7):716-22, 2010 Sep.

2. Phase III, randomised, multicentre trial of maintenance immunotherapy with low-dose interleukin-2 and interferon-alpha for metastatic renal cell cancer.
Passalacqua R. Buzio C. Buti S. Porta C. Labianca R. Pezzuolo D. Camisa R. Sabbatini R. Benecchi L. Messina C. Cengarle R. Vaglio A. Dalla Chiesa M. Tomasello G. Caminiti C.
Cancer Immunology, Immunotherapy. 59(4):553-61, 2010 Apr.

I'll email the full articles to you if like. Seems to me there are quite a lot of research on combination immunotherapeutic agents.

ClaraW
Posts: 64
Joined: Jun 2012

TW,
I'm not sure if you're still looking into Votrient. But here is a paper on:
Pazopanib for the treatment of metastatic renal cell carcinoma. [Review]
Pick AM. Nystrom KK.
Clinical Therapeutics. 34(3):511-20, 2012 Mar.

ClaraW
Posts: 64
Joined: Jun 2012

Toxicities of targeted agents in advanced renal cell carcinoma. [Review]
Patel P. Srinivas S.
Current Clinical Pharmacology. 6(3):181-8, 2011 Aug.
[Journal Article. Review]

ClaraW
Posts: 64
Joined: Jun 2012

TW,

Let me know which articles you are interested in and I'll send you the full texts asap.

Kindest Regards,
C

angec's picture
angec
Posts: 621
Joined: Mar 2012

Wow! Clara all of this info is fantastic! Thank you so much!

angec's picture
angec
Posts: 621
Joined: Mar 2012

TW... I would strongly suggest you start on Votrient in the meantime. From what I have been reading Votrient is all that you have said it is and from what I can see, makes the best choice. I would also try the MDX and think you need to seek out a trial. .I know you have mentioned you have been tied up in court and have not checked into anything much. But remember the link with the trials that was posted by Mike I think it was? They have all the MDX trials there. You punch in your areas of interest and it comes right up. I am a bit concerned that you need to start something ASAP to hold off any growth at this point while you look for something further like MDX. I don't know how old NanaLou is but doing research on the IL2 I find it is helpful in many cases but I fear it would be too strong for you. Of course, I am not a doctor but this is the feelings I get when I do my research for mom. Is it possible that all those In trials can ask for you if they can review your case via conversation and referral for a trial of MDX? I can surely look for trails being offered and send you the links as well. Please let me know how I can help.

Here is the trials link again. Put the whole thing in when reviewing, it is one link.

http://clinicaltrials.gov/ct2/results?term=kidney+cancer&recr=Recruiting&rslt=&type=Intr&cond=&intr=drugs&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&age=0&age=1&age=2&phase=0&phase=1&phase=2&rcv_s=&rcv

You can always start on a low dose of Votrient if need be. I read that 4oo mgs might work just as well as the 800 and they say maybe even 200 mgs can work. I know each case is different. With mom I am going to suggest Votrient as well, starting at the lowest possible dose of 200 or 400 to see how it does. The Doctor did say it was mom's choice to start slow since she is 80.

A lot of big decisions to make. I hope I don't come off as being senseless, but I am concerned for you, especially with your growing discomfort. I am eager to get you started on something because even when signing up for trials it doesn't happen overnight and the opinion of the " easy on the eyes" oncologist sounds spot on! ;)

Praying for you TW....

ClaraW
Posts: 64
Joined: Jun 2012

Likewise Angec, I really hope TW will be getting treatment as soon as possible to shrink the growing mass. We should all continue to do more research for TW, but I think the most important thing at the moment is for TW to be getting some treatment in the meantime.

TW, I know your oncologist is superior, but I really hope she can liase with her colleagues as a matter of urgency and sort out a plan for you asap! Maybe you could contact her office everyday prior to your appointment next Friday. I believe occasionally doctors need to be reminded, but not only that, also for her to update you on any new information/progress. That way, you can gather information from her and ponder over the information in your own time before you meet her on Friday.

Just a suggestion from a friend.

All the best,
C

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Tex I dont know much about the trials of meds or offer any suggestions to you other than I do pray for you everyday that a miracle will occur and you get the right meds to help you fight this bad bad cancer. My thoughts are with you and others on here going on the trial meds.

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

I'd like to add something of importance, I think. For me, it took about 6 weeks to get into the PDL drug trial. That was with grease on the wheels. Most of the trials will not let you participate unless you are at least 4 weeks off any meds. This has been a huge issue for me. Sutent stopped working for me in June. Then I went on Inlyta for two months and it didn't work at all. After that was when we decided to go for the trial, so I haven't taken anything in 6 weeks. I dread the scans I will get on Tuesday. I'm terrified that everything has grown and spread since my last scan 6 weeks ago, but it is what it is. I really had some doubts about if I had done the right thing. But if I had gone on to another drug and then wanted into the trial, I would have had to go 4 weeks with no treatment. So if you want to be in a trial and want to move quickly you might do better to be off meds now instead of trying a new drug. Also, many trials limit the amount of previous drugs you have taken.

Hope this makes sense. I am a bit scattered right now. Off to Nashville tomorrow for the start of what I hope will be the end of this disease in my body!

Tex, I'm thinking of you and I do agree, use as much influence as you can to get and keep the ball rolling. Be persistent. I am lucky to have a son and husband who are my best advocates and a sharp oncologist who knows how to navigate the system. If I can help you in any way, just say the word.

XO Paula

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

http://cancer.gov/clinicaltrials/search/view?cdrid=740810&version=HealthProfessional&protocolsearchid=10977053

angec's picture
angec
Posts: 621
Joined: Mar 2012

Paula, I would like to wish you much success and a very safe trip to Tn. I really feel like this will help you a great deal! I am praying for you!!

I know you are right about some trials not wanting you to have any meds at all, or at least to be free of meds for six weeks. But with TW the doctor/Oncologist mentioned to him it might be beneficial to start Votrient or Sutent to ward off possible new growth or to stablize him. I think if he waited another six weeks to get treatment it might not be the best thing for him as his growth is very rapid at the moment. I feel that it is best to try to get it stablized and possibly reduced while he starts the initiation for the possible trial of hopefully MDX. That way once he gets accepted he can wean off the meds for six weeks and hopefully by that time the growths would be smaller or at least sustained for a bit and would have bought him some time. That would be the option i would choose if it were me.

You on the other hand did the right thing with your treatment and you should not have any doubts. You seem to be thinking clearly and you took the right path. Please don't worry about the new scans. Perhaps the meds you did take had some advantage for you. But come what may, you are going to do much better now in this trial, I can feel it! This will all be past you! So go get your treatment tomorrow, keep your chin up. Laugh and have a good time and enjoy the trip. As hard as it is, try to push all of the angst aside. We want you well and will have it no other way! You are truly an inspiration to me! xxoo

TW, if you are reading. Please excuse me for discussing your situation, i feel it will be helpful to many if they should happen to stumble upon these threads. Of course, you make the final choice! It is so funny the amount of concern we all have for you isn't it? It is like you have your own posse! (slang for admirers) LOL And each and everyone of us is very sincere! All of you are heros in my book, all of you!

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

Thinking about you and willing the best possible start. We'll all be following your fortunes all the time and carrying you forward in our prayers.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Paula, thinking of you and your treatment today. I hope it went very well and you are on your way home by now. Please rest up and let us know how you are when you feel up to it! I am feeling so good knowing you started your treatment today. All my best!!
Angela

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Paula -

Waiting for update on how everything went today. Knowing you and your positive attitude, I'm betting it went great. But want to hear the words from you!!!

angec's picture
angec
Posts: 621
Joined: Mar 2012

Alice, Paula left a post on a new link. I was going to post on it but it won't let me at the moment. She said she got 20 mgs of the PDL? That sounds like an awful lot. I thought the norm was brought down to 4 mgs now or even 2 mgs. But 20 Mgs. and she didn't have to stay there overnight. She had a slight fever. Try to see if you can get to her post if you desire. It is right on top of the board! xxoo

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

Indeed I got 20 mgs. But I am getting ONLY the PDL, not in combination with Votrient or Avastin or any other drug. I think those trials have lower doses of PDL. According to my source at Duke (my son's friend who is an oncologist) they are using the 20 mg. dosage on people with colorectal cancer in a Genentech trial there. And no, since I wasn't one of the first 10 participants in the expansion group, I did NOT have to stay for continuous blood draws overnight. It was really a "piece of cake". My fever is down now and I feel pretty well.

angec's picture
angec
Posts: 621
Joined: Mar 2012

WHEW! What a relief to know you are doing well!! I couldn't comment on the other post for some reason... Paula, I can say I am so happy for you!! It is great that 20 mgs was so tolerable by your body! I really hope and pray that they are able to speed mdx to the general public. I know a lot of people can benefit from it! The fever was a good sign that your body began to fight. It is working! I know you are smiling from ear to ear and so are we!! I think this protocol was made just for you!! ;) xxoo Enjoy your weekend!!

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

Like Ange, Paula, I'm hoping you're having an enjoyable weekend, and also that it's lit up with a feeling of success from Nashville.

I now have a goodish idea of what makes sense as treatment for my own present condition. Ange and Clara, you've endorsed the view that my Wife and I had arrived at, namely that I don't have time to wait for treatment and, as pointed out by Paula, trials take time to set up, so I don't have the luxury of waiting for something appealing to turn up. The new tumour that had already grown from undetectable to 5 cm. in not very many weeks has been making its presence known increasingly unequivocally. Any significant delay now would open the door to further rapid growth and the likelihood that much of the lost ground would prove to be irrecoverable.

The options here, on our NHS, are very limited for my case basically a choice between Sutent and Votrient. That's a no-brainer, particularly after reading the latest, which David so kindly sent me, which suggests that V. will now take over from S. as the gold standard for first line treatment.

The other possibility is HDIL2. I have an onc appt for Friday and an appt at Nuclear Medicine the previous day for a Muga scan which shuld settle the hash, I hope, as to whether I'm fit and well enough to handle HDIL2 at 70.

I won't countenance chemo since I want to keep my good immune system in shape. Yesterday I vindicated my sobriquet on the 9th hole at Carnoustie ("Railway"). A strong wind had me well short despite 2 respectable shots. I then got "up and down", as golfers call it, with 2 putts - the first of 78 yards, the second a three feet one, to make par.

This morning I managed 10,0000 metres of rowing in a time within a minute of my pb for this year. Moreover, the cancer pain vanished when I started rowing and this remained the case for many hours. So, I'm well pleased with my current level of fitness and want to keep it that way. So, at the moment it looks like either IL2 or Votrient asap.

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