› Forums › General Melanoma Community › IPI update
- This topic has 18 replies, 8 voices, and was last updated 12 years, 7 months ago by Hereiam.
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- September 28, 2011 at 6:36 pm
Hi All,
So today we found out the results of Jason's 12 week scans.
Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least
Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.
Essentially we were given 3 choices;
Hi All,
So today we found out the results of Jason's 12 week scans.
Not good, the Dr. said most of his tumours have doubled in size. What is so confusing for us is that some of his sub q tumours have disapeared and others are flattening out and getting smaller. But he has at least
Jason has already been on P13k/Mek inhibitors, Braf inhibitors, Dacarbazine and now IPI. He is not healthy enough to qualify for IL-2 therapy.
Essentially we were given 3 choices;
1. Wait and see if he is a late responder to IPI scan again in 4 weeks and then in another 8 weeks after that.
2. Start a combination chemo on Monday ( Carboplatin & Paclitaxel) See how he does with side effects and response.
3. stop treatment ( life expectancy less than 4 months)
There is an Anti PD-1 trial possible coming availble in the next few months that if he's healthy enough he may qualify for.
The Dr. said the chemo regimen would not effect the possible continuing effects of the IPI.
I think our main objective is keep him alive with a good standard of living at least until our baby is born in Febuary. More time than that would be a gift.
Thoughts? Ideas?
Something we may be missing?
thanks,
Em
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- September 28, 2011 at 7:22 pm
Sorry, I can't add any help on the other options, as I haven't been thru any (I'm currently on my 1st treatment : yervoy), but obviously, if you have a baby due in a few months, as much as they feel he may have a few months left without treatment, I personally would go with #1 or #2… or wait to see if anything else comes out that may help him meet your newborn. I can't even imagine being in this situation you are in.
I have 2 kids (Ages 2 & 6) that I would give the world for, and I will fight this cancer with everything I have to beat it/contain it, destroy it, etc to stay around for these guys an extra day.
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- September 28, 2011 at 7:22 pm
Sorry, I can't add any help on the other options, as I haven't been thru any (I'm currently on my 1st treatment : yervoy), but obviously, if you have a baby due in a few months, as much as they feel he may have a few months left without treatment, I personally would go with #1 or #2… or wait to see if anything else comes out that may help him meet your newborn. I can't even imagine being in this situation you are in.
I have 2 kids (Ages 2 & 6) that I would give the world for, and I will fight this cancer with everything I have to beat it/contain it, destroy it, etc to stay around for these guys an extra day.
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- September 28, 2011 at 7:37 pm
Em,
Is Jason well enough to travel? If so, there is a clinical trial NCT01352884 with Anti-PD-1 therapy.
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01352884ContactsContact: Margaret Fleming [email protected] LocationsUnited States, Michigan Karmanos Cancer Institute Recruiting Detroit, Michigan, United States, 48201 Contact: Erica Brennan 313-576-9816 [email protected] Contact: Karen Forman 313-576-8096 [email protected] Principal Investigator: Patricia LoRusso, DO United States, North Carolina Carolina BioOncology Institute Recruiting Huntersville, North Carolina, United States, 28078 Contact: Jahleen Byers 704-947-6599 [email protected] Principal Investigator: John Powderly, MD United States, Tennessee Sarah Cannon Research Institute Recruiting Nashville, Tennessee, United States, 37203 Contact: Patient Referral Line 615-339-4214 Principal Investigator: Jeffrey Infante, MD Best regards
Jimmy B
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- September 29, 2011 at 3:35 pm
Hi Jimmy,
If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.
I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?
Thanks for all you great info.
A.
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- September 29, 2011 at 4:38 pm
A Great Question!!!!!
Ipi works on the surface molecule CTLA-4 which are upregulated during T-cell activation. Most T-cells including the Tregs will have this receptor on their surface. When this receptor is engaged, the immune response is down-regulated.. terminated. So by blocking this receptor with Yervoy (Ipi), the checkpoint remains active.
Anti- PD-1 blocks another receptor called PD-1. It also is up-regulated on the T-cell. Now on the tumor cells, there are receptors called PD-L1. This PD-L1 receptor can bind/engage with PD-1 on the T-cells. When this happens, the immune rsponse is down-regulated and no response is generated.
T -cell and the tumor cell
So these two therapies block two different pathways that seem keep the checkpoint active. Most likely there are two checkpoints and blocking them both keep the immune response going.
Also, there are many other tumor-induced suppression.
I hope this answers your question.
Warm regards,
Jimmy B
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- September 29, 2011 at 4:38 pm
A Great Question!!!!!
Ipi works on the surface molecule CTLA-4 which are upregulated during T-cell activation. Most T-cells including the Tregs will have this receptor on their surface. When this receptor is engaged, the immune response is down-regulated.. terminated. So by blocking this receptor with Yervoy (Ipi), the checkpoint remains active.
Anti- PD-1 blocks another receptor called PD-1. It also is up-regulated on the T-cell. Now on the tumor cells, there are receptors called PD-L1. This PD-L1 receptor can bind/engage with PD-1 on the T-cells. When this happens, the immune rsponse is down-regulated and no response is generated.
T -cell and the tumor cell
So these two therapies block two different pathways that seem keep the checkpoint active. Most likely there are two checkpoints and blocking them both keep the immune response going.
Also, there are many other tumor-induced suppression.
I hope this answers your question.
Warm regards,
Jimmy B
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- September 29, 2011 at 3:35 pm
Hi Jimmy,
If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.
I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?
Thanks for all you great info.
A.
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- September 28, 2011 at 7:37 pm
Em,
Is Jason well enough to travel? If so, there is a clinical trial NCT01352884 with Anti-PD-1 therapy.
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01352884ContactsContact: Margaret Fleming [email protected] LocationsUnited States, Michigan Karmanos Cancer Institute Recruiting Detroit, Michigan, United States, 48201 Contact: Erica Brennan 313-576-9816 [email protected] Contact: Karen Forman 313-576-8096 [email protected] Principal Investigator: Patricia LoRusso, DO United States, North Carolina Carolina BioOncology Institute Recruiting Huntersville, North Carolina, United States, 28078 Contact: Jahleen Byers 704-947-6599 [email protected] Principal Investigator: John Powderly, MD United States, Tennessee Sarah Cannon Research Institute Recruiting Nashville, Tennessee, United States, 37203 Contact: Patient Referral Line 615-339-4214 Principal Investigator: Jeffrey Infante, MD Best regards
Jimmy B
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- September 28, 2011 at 7:51 pm
Dear Em,
I just looked at Jason's treatment history and it sounds like you two have been through so much. I hope that you are able to get into one of the trials that Jim has recommended to you. Best of luck and lots of prayers. He has to be able to be there for his new baby!
Cristy, Stage IV
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- September 28, 2011 at 7:51 pm
Dear Em,
I just looked at Jason's treatment history and it sounds like you two have been through so much. I hope that you are able to get into one of the trials that Jim has recommended to you. Best of luck and lots of prayers. He has to be able to be there for his new baby!
Cristy, Stage IV
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- September 28, 2011 at 9:08 pm
What is his current performance status? If he is still doing relatively okay, I'd try either the chemo or the trial someone referenced. I am sorry you are faced with this.
Will had very extensive liver mets – over 80% of his liver – but he did respond to the same chemo you mentioned. Due to his very depleted condition at the time, though, it was too toxic. If your husband is in somewhat better condition this might be a good option for time.
Lori
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- September 28, 2011 at 9:08 pm
What is his current performance status? If he is still doing relatively okay, I'd try either the chemo or the trial someone referenced. I am sorry you are faced with this.
Will had very extensive liver mets – over 80% of his liver – but he did respond to the same chemo you mentioned. Due to his very depleted condition at the time, though, it was too toxic. If your husband is in somewhat better condition this might be a good option for time.
Lori
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- September 29, 2011 at 7:33 am
Em, I am saddened to read this. It seems that the tumour burden is becoming the main problem now. Unfortunately, melanoma has a tendency to do unpredictable things, with some tumours getting smaller and others actively resisting the effects of treatment.
I urge you not to limit the choices that might be available. Combination chemo is usually more toxic than single agent chemo, so one needs to keep this in mind. Jason could possibly try another type of single drug chemo, and one never knows if he might respond well to it.
If an Anti PD-1 trial can be found quickly, then I think that would be a good thing to seriously consider. If Jason is ineligible for this, then perhaps another clinical trial of something else might be worth looking at.
I don't want to alarm you, but I feel that time is of the essence and therefore definite plans are needed. Life expectancy is often impossible to predict, and some people can survive for many months or longer. However, it is also wise to be aware that others do not fare as well and their condition may deteriorate quiet suddenly.
Take care
Frank from Australia
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- September 29, 2011 at 2:26 pm
Hi Emily,
I'm really sorry to hear this news, but I'm not sure how Dr. Hogg can presume the ipi is not working after 12 week scans, when it seems to be the norm to scan again.
On the Melanoma International website, there is a ipi webinar presented by Dr. Wolchuk (the guy who's been dealing with ipi since the beginning). He had a patient with liver mets who after 12 weeks looked worse then before. He had more tumours and when you looked at scans from previous, he looked worse. Dr. Wolchuk waited another 4 weeks to find that his patients tumours were shrinking and 4 years later, he is still in remission with no cancer.
This is a very tough decision, but if I were in your husbands situation, I would try and get into an Anti PD1 trial ASAP. Chemo also does work for some people and could very well work for your husband to alleviate some of his tumour burden (if the ipi isn't working). While doing another treatment, he could have another scan in 4 weeks to see if the ipi has worked or not. This way, you are continuing with treatment, but hoping the ipi will kick in.
I'm sending you prayers and good luck that your husband can get into a trial or that ipi works. I know this situation seems dire, but please don't give up hop just yet. Many things are possible.
Lisa – Stage 4
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- September 29, 2011 at 2:26 pm
Hi Emily,
I'm really sorry to hear this news, but I'm not sure how Dr. Hogg can presume the ipi is not working after 12 week scans, when it seems to be the norm to scan again.
On the Melanoma International website, there is a ipi webinar presented by Dr. Wolchuk (the guy who's been dealing with ipi since the beginning). He had a patient with liver mets who after 12 weeks looked worse then before. He had more tumours and when you looked at scans from previous, he looked worse. Dr. Wolchuk waited another 4 weeks to find that his patients tumours were shrinking and 4 years later, he is still in remission with no cancer.
This is a very tough decision, but if I were in your husbands situation, I would try and get into an Anti PD1 trial ASAP. Chemo also does work for some people and could very well work for your husband to alleviate some of his tumour burden (if the ipi isn't working). While doing another treatment, he could have another scan in 4 weeks to see if the ipi has worked or not. This way, you are continuing with treatment, but hoping the ipi will kick in.
I'm sending you prayers and good luck that your husband can get into a trial or that ipi works. I know this situation seems dire, but please don't give up hop just yet. Many things are possible.
Lisa – Stage 4
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- September 29, 2011 at 7:33 am
Em, I am saddened to read this. It seems that the tumour burden is becoming the main problem now. Unfortunately, melanoma has a tendency to do unpredictable things, with some tumours getting smaller and others actively resisting the effects of treatment.
I urge you not to limit the choices that might be available. Combination chemo is usually more toxic than single agent chemo, so one needs to keep this in mind. Jason could possibly try another type of single drug chemo, and one never knows if he might respond well to it.
If an Anti PD-1 trial can be found quickly, then I think that would be a good thing to seriously consider. If Jason is ineligible for this, then perhaps another clinical trial of something else might be worth looking at.
I don't want to alarm you, but I feel that time is of the essence and therefore definite plans are needed. Life expectancy is often impossible to predict, and some people can survive for many months or longer. However, it is also wise to be aware that others do not fare as well and their condition may deteriorate quiet suddenly.
Take care
Frank from Australia
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- September 30, 2011 at 12:42 pm
Hi Em,
I am verry sorry to hear such sad news, but I truly hope that you are strong and trying your best to stay positive.
Of course, I cannot give any sure answers, and can just share my experience and opinion. My aunt was melanoma stage 3 patient and she did not respond to ipi either. Her oncologist adviced her to try virotherapy. And it was effective on her. My point is, if your goal is at least try to make the situation better not worse (cuz, as I understand, he is too weak to be able to use chemo) then I would suggest trying virotherapy. Well, my aunt become NED quite fast (I know your husband is in more serious situation) but the main thing was the fact, that her life-quality become so much more better! She did not suffer from depressions, nausea, fatigue or anything like that.
Maybe, if you really want to try a new option, you should consider this.Wishing you all the best and keeping your husband in my prayers!
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- September 30, 2011 at 12:42 pm
Hi Em,
I am verry sorry to hear such sad news, but I truly hope that you are strong and trying your best to stay positive.
Of course, I cannot give any sure answers, and can just share my experience and opinion. My aunt was melanoma stage 3 patient and she did not respond to ipi either. Her oncologist adviced her to try virotherapy. And it was effective on her. My point is, if your goal is at least try to make the situation better not worse (cuz, as I understand, he is too weak to be able to use chemo) then I would suggest trying virotherapy. Well, my aunt become NED quite fast (I know your husband is in more serious situation) but the main thing was the fact, that her life-quality become so much more better! She did not suffer from depressions, nausea, fatigue or anything like that.
Maybe, if you really want to try a new option, you should consider this.Wishing you all the best and keeping your husband in my prayers!
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