Papillary RCC - articles and research

[SER]

Came across this today whilst googling. Anyone know anything about the drug?

http://www.medpagetoday.com/MeetingCoverage/KCA/16207

Emma

foretinib (GSK1363089), XL880 (?) Emma,
My husband talked to clinical trial researchers about getting on this, but the trial was closed. They told him that there was "reasonably effective" in PRCC, but the results were very "uneven" as to who it helped, and who it didn't. They said the side effects were slightly less than Sutent. They put him on a list for "Possible Phase-3 trial, but aren't sure when/if there will be one.

They also told him, that you can't just jump from one drug or trial to the next, because then a "new drug trail", may not want you if you've ever taken more than one drug.

C-Met inhibitor(PF-02341066) , for small cell ca like PRCC, that Pfizer is doing:
He was discouraged from trying the C-Met inhibitor at this time, because "It may or may NOT help...we have no guarantee that it will help you, and it may keep you from going on another drug that looks more promising, whenever that drug may or may not come up.

They've not said "NO", but are "discouraging" changing from Sutent. But everybody says Sutent is better in Clear cell, than Papillary.....So....do they really understand that, while we are on a drug (Sutent) that is considered "Palliative" I HATE THAT WORD, as a patient, we may WANT to gamble on the next new drug....taking our chances whether it will work for US, or not! How LONG can we wait w/PRCC mets before it's too late, and shouldn't it be up to US to decide whether to take the risk or not.

My husband is 78. When do we run out of time, and need to take a risk on a new drug, be it foretinib, or the new C-Met inhibitor(PF-02341066), for small cell ca (like PRCC), that Pfizer is doing?

This drug is being talked about in many, many articles in Uro journals etc., and because it has worked well for PRCC in a Petri dish, and in rats. The C-Met trial director told Tom that they feel good about how it works in lung ca. that have this small cell molecule sensitivity to C-Met inhibitors, and anyone, who has any small cell cancer types, that are tested to have this molecule sensitivity, will be accepted in the Phaze-1 trial. Phaze-1 is only to decide the dosage! It would take Phaze-2/3 to see how well it works in DESTROYING people's ca.

It is SO difficult to deal with as a layperson, and I am plagued with distrust of the motivations of the drug companies and doctors! I assume that they have to harden themselves from the panic, pain, and urgency that patients and caregivers are going through...or it would interfere with their jobs....but Damn!
Sarah
wife of Tom When the world says, "Give up", Hope whispers, "Try it one more time."

[SER]

Hi all,
Probably you all knew this already, but a quick search on clinicaltrials.gov lists a trial for papillary rcc patients in Europe, including the UK.
Information is here:

http://clinicaltrials.gov/ct2/show/NCT0 ... rcc&rank=2

The agent is RAD001/everolimus/Afinitor and is for first-line use only (no prior drug therapy). Given some of the thinking that the mTOR
inhibitors might be more effective than the TKIs for non-clear cell, this might be a good way to get the drug, provided of course that you
haven't had anything else to date.

Deb
near Toronto, Canada

Deb,
As you can see, I get frustrated w/the whole clinical trial thing...it's slowness, unable to access one. I got excited when I read about the C-met Inhibitor cell thing on:
http://cancerres.aacrjournals.org/cgi/c ... 63/17/5462
because at the end, it lists SEVERAL abstracts about the benefits for Papillary! We talked to the director of the trial at Dana-Farber, and it was very discouraging. I hear "hope" from you and a few others about finding the right drug for Papillary, but then get slapped in the face. I truly feel that because of Tom's "chronological" age, the medical community....from CCF to our local Onco, are all they need to do is "hold his hand" until he dies, because he's lived a long life anyway and this makes me mad He was SO healthy, before cancer! This summer, he had dug a 140ft, 2ft deep, 16" wide trench in the hot Alabama sun to put in a French drain...two weeks before Sutent!

So....we have to wait til these Phase-1/2/3 trials are over, before he can get a REAL drug for PAPILLARY. I just don't know how I can wait, while he's taking a drug that is considered "palliative". I wish we had an Oncologist who felt like he/she would fight for us...do some research FOR us, and take some risks WITH us!

Sarah
Wife of Tom: No PRCC in the cryoablated kidney (the think)...only PRCC mets in his muscles of abdomin, back and hip flexors. Inoperable.

[Wildcatisland]

Hi Sarah

I know exactly where you are coming from - the weekend before P was diagnosed, he'd worked 12 hours straight photographing a wedding. Now, he can't do that because he can't take bookings a year in advance. A year ago, he walked miles with our dog, now he can't get up the stairs without difficulty. There again, a year ago we didn't think he'd see our daughter's fourth birthday. P is 62.

There are apparently no drug trials taking place for papillary in the UK, according to his oncologist, and he's been excluded from most trials that are being held by having taken interferon and / or sutent. And they've just had to drop the dosage on his sutent as it was affecting his white blood cell count.

Gah.

Take care Sarah.

Emma

[SER]

Emma,
Did you learn any more about fortinib?? The "Medpagetoday" article you posted in October? I did research, and was dissapointed when I talked to the director of a clinical trial for this drug. He says it's "not ready" to be used for PRCC. He said it's been found to be helpful for small cell lung ca. but only has been used to kill PRCC in petri dish and rats.

Now, I've been doing so much research, calling so many places, that I may not have got the best answers, and I will admit to getting confused! That 's why I was hoping you had received some information on fortinib.

Sarah/USA/Alabama
Wife of Tom

Cryoablation of kidney tumor 2002.
Dx’d w/Papillary RCC June 2009. Mets spread throughout abdominal, back muscles and fascia.

"When the world says, "Give up", Hope whispers, "Try it one more time."

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Came across this today whilst googling. Anyone know anything about the drug?

http://www.medpagetoday.com/MeetingCoverage/KCA/16207

Emma

[Wildcatisland]

Hi Sarah

No, we didn't get any further, although P did mention it to the oncologists (now reduced to one again as the one we were hoping would be able to get to another treatment doesn't really cover papillary rcc) and got no joy. Like quite a lot of things I've seen, there doesn't seem to be a lot going on for papillary outside of the USA, and if there is, then he's already barred from the trial by the drugs he's already tried. Sutent seems to be stabiling it at present, though his blood test showed a white cell problem so the dose was decreased to 37.5. He's back on the full dose again this cycle, and although he's had another scan, the computers were down on the day of his appointment so the oncologist hadn't seen it (even though it had been taken several days earlier).

Our four year old has been pretty generous with her viruses over the Christmas holidays as well.

Take care and all the best for 2010.

Emma

[SER]

Sorry to take so long writing back. We have been up to our eyeballs in aligators! It started with an inner ear infection, that was resisting any treatment. His ear drum ruptured Xmas eve, and he's deaf in that ear now. The infection got worse, because the Sutent has messed up about ALL his blood work...CBC, etc. He has NO NORMAL lab reports any more!

I took Tom to the ER on New Years Eve with a raging fever of 103. The Sutent has just destroyed his immune system,(Very low white and red blood cells) and he had acquired a systemic Staph infection in his blood stream. Thank God it wasn't MRSA or some more resistant bacteria, because the IV antibiotics for 4days seemed to get in under control. The sent him home, because they felt he could get along w/oral abx, and were more worried about him getting a hospital acquired infection, than of him being home. He had to wear a mask the whole time.

I emailed our doctor @ Cleveland Clinic, Brian Rini, who repeated that there is no other drug, for Papillary. He said to stay off all cancer drugs though, until Tom gets things under control. He's lost weight, so that it really shows now, and he has not eaten solid food for about a month!! "I" think the Sutent, at the full 50mg's would kill him, before the PRCCa mets would! He was too stubborn to take a smaller dose! But look at what all the Side Effects got him!!! Nothing! The CT scan last week shows growth, both in the muscle mets, two lymph nodes, and they think "something" is in his upper right lung lobe now. The kidney "spot" remains the same.

I am so impressed with those of you that have had Papillary RCC and have lived for YEARS!! We've just got to figure out how to do that. Tom IS on a list at NIH for a clinical study..............just wish they would hurry up!!! WE NEED A PAPILLARY DRUG NOW!!

I am trying to work and take care of his emergencies, because he is ADAMAT that I not loose my job, "If anything should happen" to him! It makes a really stressful life for me! I have to fight him, to just let me take him to the doctors. He is NOT SAFE to drive!

Sarah
Wife of Tom
Cryoablation of kidney tumor 2002. Dx’d w/Papillary RCC June 2009. Mets spread throughout abdominal, back muscles and fascia.

"When the world says, "Give up", Hope whispers, "Try it one more time."

[Rose Woodward]

Oh Sarah, what a time you are having - I can't add anything at the moment - I wonder have you emailed Debbie Maskens - I'm sure she is doing a papillary trial - you can catch her posts here on this forum and on Kidney Cancer Canada, and one of them has a link to her UTube clip where she talks about what she is doing..

We are thinking of you and send hugs to try and help you both in dealing with all this,

as ever

Rose

[SER]

We have given our local Oncologist an ultimatim....FIND US A TRIAL FOR PRCC, or...get "compassionate use" for a Pap drug from GSK, like the XL880. We've talked to Dr Rini's nurse for an hour (Cleveland clinic). It's been over four weeks now...and no drug!! I'm getting anxious! Everyone on my PRCC support group, knows what "type" Pap they have.

No one who is taking an "interest" in T's medical care, seems to think that finding out what "type" of Papillary RCC T has is important! While this confuses me, I wonder if it's because his mets are in his muscle, and they just don't think it's "worth" finding, because this makes his prognosis so bad! I REALLY hate this so very, very much!!

Sarah
Wife of Tom
Cryoablation of kidney tumor 2002. Dx'd w/Papillary RCC June 2009. Mets spread throughout abdominal, back muscles and fascia.

"When the world says, "Give up", Hope whispers, "Try it one more time."

[Wildcatisland]

Hi Sarah (and everyone else)

We have now ended up in a similar situation, P's oncologist has now stopped sutent after 6 cycles as it has not inhibited the growths of the "Spots" (her words) in his lungs sufficiently for them to say it is successful, even though it appears to have held up the lymph node tumours. The oncologist (who is a renal rather than an RCC specialist) is approaching the PCT for funding for Afinitor (I think - we were moving house the day of his appointment) but stated rather ominously "I always appeal" and the onc nurse said we should write to our MP, this before they've even applied for funding.

Can anyone point me in the direction of some information which shows that Afinitor has some effect on Papillary RCC, so that I have something to fight the PCT with (Birmingham N&E). Also, my mother informed me that if you have young children the NHS can spend more money on you - anyone know if this may be true?

The onc is still only ordering scans of his lungs and abdomen - should we be requesting full body scans, or are there things we should look out for if this starts spreadign further whilst he isn't taking the drugs.

On the plus side, 14 months after a Stage IV diagnosis, he's still here, and only taking paracetemol and gaviscon.

Emma

[Julia]

Hi Emma


Have just read your post, I am so sorry to hear what you are now faced with. It really is dire to not only be faced with the medical trauma of what you are going through but the additional stress brought on by applying for funding. I am sure you may have realised already that you will have a lot of support from other patients and carers on this forum.

With regard to your specific queries, firstly the affect Afinitor has on Papillary RCC and the specific scans - off the top of my head I don’t know, but after speaking to Rose about this we will do a bit of research and come back to you asap. Unless others come back in the meantime.


As far as having young children and the NHS spending more money on you is concerned, this is not something I have come across before and as far as I am aware is not true.


Rose and I have in the past been involved in a lot of applications for Sutent/Nexavar pre NICE appraisal. As part of the process of applying or appealing against decisions we have encouraged people to write a personal statement in support of their application. Obviously things such as children/dependants is something that has come up in this personal statement.

We can certainly help you in your fight as you say with the PCT, I agree with you it does sound rather ominous the Oncologist stating ‘I will always appeal’ before an application has even gone in. Sadly it is a situation we are all too familiar with, but you are most certainly not alone.

I will send you by PM my contact details and am more than happy to talk you through the process, what you can do to help, who to speak to, what information to gather etc and I will also see if we have had any previous dealings with Birmingham N&E PCT.

In the meantime there is also a mass of information for you to read under the ‘downloads’ section on the home page. There are some good articles here that will give you a sound basis and understanding on the process of applying for treatment.

If you have a read through that, I will come back to you on some of the specifics mentioned above and between us all we will support you to help get the treatment for your partner . On a positive note as you say he is 14 months down the line of a Stage lV diagnosis.



Best wishes

Julia