› Forums › General Melanoma Community › Here We Go Again!! No PD-1 Trial for me.. What’s next?
- This topic has 16 replies, 8 voices, and was last updated 13 years, 9 months ago by
Amy Busby.
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- December 4, 2010 at 3:20 am
Wishing I had some good news to post. But thought I was walking into Moffit Wednesday to start the PD-1 trial. Got there… Oh no.. you need to see the doctor before we can start.
Wishing I had some good news to post. But thought I was walking into Moffit Wednesday to start the PD-1 trial. Got there… Oh no.. you need to see the doctor before we can start.
Doctor walks in, bad news………we can't put you on the PD-1 with Vaccine trial because your HLA is A*03. I took it in stride after picking my feelings off the floor. OK Doc what do we do. He said compassionate IPI is our choice. He would rather do the Adoptive Cell Therapy but it takes at least 6 weeks and the way the tumors were growing (they have tripled in numbers in the liver) he did not want to waste the time and he would rather get me started on the IPI. The IPI should start within 2 weeks.
I went along with his recommendation …. (please keep in mind I was in shock and not responsible for my actions after news like that.)
(For those that don't know my history with Stage IV diagnosed last Dec is Docetaxol-YM-155 for 2 rounds (6 weeks) then failed, 6 rounds of Bio Chemo and 2 months of maintenance (IL2) then failed. No need to go into the stage 3 surgeries and limb infusions procedures in the groin and leg and radiation for the 2 years prior starting Dec 2007 @ Moffit in Tampa).
After a day of being kicked to the curb an MPIP friend said "we have a lot of work to do. We need to find out why… they told you 1 month ago you were HLA 2a positive……..why now A*03 what happened?"
She said "Call the PD-1 Trial administrator and find out if you have to be HLA 2a positive to be in the trial and if it yes, ask for an exception."
She said
"Email the doctor and ask why I would only get 3mg of IPI on the compassionate basis and most of the trials that went on were 10mg?"
" Ask him what is plan b? We need to have that plan in place no time to waste if IPI does not work."
"Ask him since IPI takes 3 months before you scan… can there something to find out the progress in the middle of the 3 month time slot?"
I did email him, not all questions answered but she got me to get him thinking harder I hope.
If any of you have any suggestions or questions to help out in my quest for the silver bullet, I would appreciate it.
I have personally met several people from the MPIP board and most have been extremely supportive. They will at least help extend my life.. and hopefully they help save it.
By the way, I'm back in the game in fighting mode again.
Rocky (Stage IV Liver Mets)
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- December 4, 2010 at 4:19 am
Rocky,
I'm sorry your getting such a run around!! Last year when Amy had her recurrance I believe that they started growing her T-cells for a plan B when she went into Bio-chemo. Any chance they can start yours just in case you need it?
In 06 I was in a trial where 2 of the arms you needed to be HLA2A. I wasn't. It was explained to me that they knew that the vaccine would not work on me, therefore I wasn't eligible for it. It is upsetting to hear them tell you the wrong info when you could have been spending this time looking into options or onto the ippi instead of waiting with wrong info.
With my last recurrance I knew that one spot was mel because of the fna. Had my PET/CT and the nurse called and told me that was the only spot – I was so excited to know that progression was only in the one area. Boy was I floored when I walked into my appointment a week later and the Dr. assumed that I had been told of the other area and she started talking systemic instead of surgery. This week when I go for my PET I'll be traveling to my mel specialists office instead of local onc. and getting the info first hand!!
From what I have read, many studies are saying that the 3mgs. is just as effective as the 10 mgs.
Sending prayers and hugs that you are an Ippi responder!
Linda
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- December 4, 2010 at 5:46 am
Linda thanks for sharing. I will be seeing the Dr sometime according to him. I haven't an appt yet. But planning on staying close to the phone and bugging them Monday. I will be asking him if they can grow the T-Cells while on IPI.
Hopefully things will go well.
Prayers to You Too Linda.
Rocky (Stage IV Liver Mets)
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- December 4, 2010 at 5:46 am
Linda thanks for sharing. I will be seeing the Dr sometime according to him. I haven't an appt yet. But planning on staying close to the phone and bugging them Monday. I will be asking him if they can grow the T-Cells while on IPI.
Hopefully things will go well.
Prayers to You Too Linda.
Rocky (Stage IV Liver Mets)
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- December 5, 2010 at 7:28 pm
I did harvest cells for a T-cell trial before starting biochem so they'd have time to grow while I screwed around with biochem. They grew like gangbusters apparently and are sitting frozen on a shelf somewhere. Only now because of my brain involvement I am disqualified from backtracking to do the t-cell / Il2 trial that the cells were grown for. So how's that for BS? My t-cells that I'm sure could be used to benefit me in some way are shelved indefinitely with no access. Crazy.
I'm doing the ipi comp. use too Rocky. I have to hold my IL2 maintenance doses for my LMD. I guess we'll see if there is any activity on the MRI next month before I worry about that. I was stable / shrinking when I started the ipi 3 rounds ago.
I am hoping for the best on it. I'll be hoping and praying for a good response for you too. I know it sucks to be faced with dwindling options. But you've beaten the bushes and made reasonable choices and fought like hell for a long time. I have every reason to believe that you'll continue to do so!
Stay strong!
Love,
Amy
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- December 5, 2010 at 7:28 pm
I did harvest cells for a T-cell trial before starting biochem so they'd have time to grow while I screwed around with biochem. They grew like gangbusters apparently and are sitting frozen on a shelf somewhere. Only now because of my brain involvement I am disqualified from backtracking to do the t-cell / Il2 trial that the cells were grown for. So how's that for BS? My t-cells that I'm sure could be used to benefit me in some way are shelved indefinitely with no access. Crazy.
I'm doing the ipi comp. use too Rocky. I have to hold my IL2 maintenance doses for my LMD. I guess we'll see if there is any activity on the MRI next month before I worry about that. I was stable / shrinking when I started the ipi 3 rounds ago.
I am hoping for the best on it. I'll be hoping and praying for a good response for you too. I know it sucks to be faced with dwindling options. But you've beaten the bushes and made reasonable choices and fought like hell for a long time. I have every reason to believe that you'll continue to do so!
Stay strong!
Love,
Amy
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- December 4, 2010 at 4:19 am
Rocky,
I'm sorry your getting such a run around!! Last year when Amy had her recurrance I believe that they started growing her T-cells for a plan B when she went into Bio-chemo. Any chance they can start yours just in case you need it?
In 06 I was in a trial where 2 of the arms you needed to be HLA2A. I wasn't. It was explained to me that they knew that the vaccine would not work on me, therefore I wasn't eligible for it. It is upsetting to hear them tell you the wrong info when you could have been spending this time looking into options or onto the ippi instead of waiting with wrong info.
With my last recurrance I knew that one spot was mel because of the fna. Had my PET/CT and the nurse called and told me that was the only spot – I was so excited to know that progression was only in the one area. Boy was I floored when I walked into my appointment a week later and the Dr. assumed that I had been told of the other area and she started talking systemic instead of surgery. This week when I go for my PET I'll be traveling to my mel specialists office instead of local onc. and getting the info first hand!!
From what I have read, many studies are saying that the 3mgs. is just as effective as the 10 mgs.
Sending prayers and hugs that you are an Ippi responder!
Linda
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- December 4, 2010 at 6:58 am
Hi Rocky,
I'm sorry you are going through all this and can imagine how disappointing it was to hear about the situation with your HLA type.
With regard to the 3mg dosing of Ipi, I believe that they found through the clinical trials that have already been conducted, that the 3mg dose was as effective as the 10mg. Here is a link from the New England Journal of Medicine reviewing the improved survival: http://www.nejm.org/doi/full/10.1056/NEJMoa1003466
It's good to see your fighting spirit is reared up and I'm sending good thoughts and prayers that the Ipi will be effective for you and kick mel to the curb!
Best regards,
Mary
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- December 4, 2010 at 6:58 am
Hi Rocky,
I'm sorry you are going through all this and can imagine how disappointing it was to hear about the situation with your HLA type.
With regard to the 3mg dosing of Ipi, I believe that they found through the clinical trials that have already been conducted, that the 3mg dose was as effective as the 10mg. Here is a link from the New England Journal of Medicine reviewing the improved survival: http://www.nejm.org/doi/full/10.1056/NEJMoa1003466
It's good to see your fighting spirit is reared up and I'm sending good thoughts and prayers that the Ipi will be effective for you and kick mel to the curb!
Best regards,
Mary
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- December 4, 2010 at 4:04 pm
Rocky,
I got nothing for you, but it sounds like you are ON TOP of it. I just wanted you to know I am keeping my fingers crossed for you.
dian
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- December 4, 2010 at 4:04 pm
Rocky,
I got nothing for you, but it sounds like you are ON TOP of it. I just wanted you to know I am keeping my fingers crossed for you.
dian
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- December 4, 2010 at 8:18 pm
Rocky, the run around sounds all too familiar, it is very frustrating. I posted a few days ago about PV-10/Rose Bengal becoming available under Compassionate use. It has a good response for direct injection into Tumors and appears to have some bystander effect. I am not sure if they have tried direct injection into a liver before so i guess you could ask.
The contact is [email protected]
best wishes
James
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- December 4, 2010 at 8:18 pm
Rocky, the run around sounds all too familiar, it is very frustrating. I posted a few days ago about PV-10/Rose Bengal becoming available under Compassionate use. It has a good response for direct injection into Tumors and appears to have some bystander effect. I am not sure if they have tried direct injection into a liver before so i guess you could ask.
The contact is [email protected]
best wishes
James
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- December 5, 2010 at 3:53 am
Hi Rocky, I’m glad you had a friend to help you after your experience. You might request copies of your medical record regularly to see what the test results are and hopefully to see the doctor’s notes. I understand how confusing it can be when you are in the office, the medical staff is in a hurry and things change and you have to make a decision unprepared.Also, if your doctor can’t come up with a plan b, you might need another opinion. Keep yourself strong for the fight!
Jule
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- December 5, 2010 at 3:53 am
Hi Rocky, I’m glad you had a friend to help you after your experience. You might request copies of your medical record regularly to see what the test results are and hopefully to see the doctor’s notes. I understand how confusing it can be when you are in the office, the medical staff is in a hurry and things change and you have to make a decision unprepared.Also, if your doctor can’t come up with a plan b, you might need another opinion. Keep yourself strong for the fight!
Jule
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- December 5, 2010 at 4:11 am
Rocky,
Ipi is a good choice!
Were you also tested for the Raf (A, B, C?)
I am in Anti-PD-1 trial and this Wednesday will be the final round for the first 12 weeks…hoping to begin the second 12 weeks soon after…
Did they happen to do the Apheresis on you before you saw the Dr?
They do that before starting and then when you get to the end of this trial …They take the T cells….maybe they can grow those! I have some in Seattle they grew for a trial (no longer measurable disease so they froze them and holding them for me)
My HLA is
A*0101 A*0201
B*0801 B*4402
Cw*0501 Cw*0701
They also check the Immunophenotype-from biopsy tissue
My melan-A and the gp100 were UNIFORMLY POSITIVE
NY-ESO-1 NEGATIVE
Mouse IgG1 non-Immune NEGATIVE
Tyrosinase UNIFORMLY POSITIVE
They said having melan-A and the gp100 were enough to get me into the trial…they explained the vaccine was made specific to having certain ones …Evey other week I get in one thigh-
Two injections with gp100:209-217(210M) Peptide,
Two injections with MART-1:26-35(27L) Peptide,
One injection with gp100:280-288(288V) Peptide,
one injection with NY-ESO-1 Peptide and
Montanide ISA 51 VG….
they use big old horse needles and rotate thighs every other week as well…I have to have my thigh iced down and frozen before injections begin…
I also get MDX 1106 ( anti-PD-1) in an IV
I think with the targeted immunotherapies we are going to see a lot of other “specifics” which will knock us out of other trials…I always want a plan B and a plan C but right now I will settle for this trial and hope it works for me.
My friend is doing the YM-155 and Docetaxoland is on her 10thround…she is the longest to remain on it and is having good shrinkage…it is so harsh on her and she always gets sick and needs blood after each one and sometimes before…
I have another friend who was surgically made NED in July in the same Anti PD 1 trial… she had to stop the trial around week 5 or 6 as they found many many small METS in the plural lining of her lung.
This trial is offered for those who cannot be surgically resected and in a separte yet same trial it is offered to those who are NED…
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- December 5, 2010 at 4:11 am
Rocky,
Ipi is a good choice!
Were you also tested for the Raf (A, B, C?)
I am in Anti-PD-1 trial and this Wednesday will be the final round for the first 12 weeks…hoping to begin the second 12 weeks soon after…
Did they happen to do the Apheresis on you before you saw the Dr?
They do that before starting and then when you get to the end of this trial …They take the T cells….maybe they can grow those! I have some in Seattle they grew for a trial (no longer measurable disease so they froze them and holding them for me)
My HLA is
A*0101 A*0201
B*0801 B*4402
Cw*0501 Cw*0701
They also check the Immunophenotype-from biopsy tissue
My melan-A and the gp100 were UNIFORMLY POSITIVE
NY-ESO-1 NEGATIVE
Mouse IgG1 non-Immune NEGATIVE
Tyrosinase UNIFORMLY POSITIVE
They said having melan-A and the gp100 were enough to get me into the trial…they explained the vaccine was made specific to having certain ones …Evey other week I get in one thigh-
Two injections with gp100:209-217(210M) Peptide,
Two injections with MART-1:26-35(27L) Peptide,
One injection with gp100:280-288(288V) Peptide,
one injection with NY-ESO-1 Peptide and
Montanide ISA 51 VG….
they use big old horse needles and rotate thighs every other week as well…I have to have my thigh iced down and frozen before injections begin…
I also get MDX 1106 ( anti-PD-1) in an IV
I think with the targeted immunotherapies we are going to see a lot of other “specifics” which will knock us out of other trials…I always want a plan B and a plan C but right now I will settle for this trial and hope it works for me.
My friend is doing the YM-155 and Docetaxoland is on her 10thround…she is the longest to remain on it and is having good shrinkage…it is so harsh on her and she always gets sick and needs blood after each one and sometimes before…
I have another friend who was surgically made NED in July in the same Anti PD 1 trial… she had to stop the trial around week 5 or 6 as they found many many small METS in the plural lining of her lung.
This trial is offered for those who cannot be surgically resected and in a separte yet same trial it is offered to those who are NED…
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