› Forums › General Melanoma Community › Ippi dosing and follow up
- This topic has 36 replies, 7 voices, and was last updated 8 years, 2 months ago by
Amelia27.
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- February 3, 2016 at 10:56 pm
Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.
Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?
thanks Greg
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- February 4, 2016 at 1:44 am
Hi Greg,
I believe it is the initial 4 doses and then 1 dose every 3 months until it has been 12 months. So, my oncologist has said if everything continues to go well for me after my 4th dose on Feb. 18th, I will get the maintenance doses, 1 in May, 1 in August, and 1 in November and then I'd be done. She said that if I can only get through the first 4 that's great and that's the most important part of it. You can ask your oncologist about it, if you're doing well like me, you might want to do the whole year.
-Jenn
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- February 4, 2016 at 1:44 am
Hi Greg,
I believe it is the initial 4 doses and then 1 dose every 3 months until it has been 12 months. So, my oncologist has said if everything continues to go well for me after my 4th dose on Feb. 18th, I will get the maintenance doses, 1 in May, 1 in August, and 1 in November and then I'd be done. She said that if I can only get through the first 4 that's great and that's the most important part of it. You can ask your oncologist about it, if you're doing well like me, you might want to do the whole year.
-Jenn
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- February 4, 2016 at 1:44 am
Hi Greg,
I believe it is the initial 4 doses and then 1 dose every 3 months until it has been 12 months. So, my oncologist has said if everything continues to go well for me after my 4th dose on Feb. 18th, I will get the maintenance doses, 1 in May, 1 in August, and 1 in November and then I'd be done. She said that if I can only get through the first 4 that's great and that's the most important part of it. You can ask your oncologist about it, if you're doing well like me, you might want to do the whole year.
-Jenn
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- February 4, 2016 at 2:42 am
This is sad to say, but it may depend in part on your insurance. I did the 4 treatments of ipi last winter, and there was no talk of any follow-up doses. The plan was always that if there was progression following those 4, the next step would be to Keytruda, which I have been getting since July. And in my case at least it is working better than ipi, with almost no side effects.
But I had heard about maintenance dosing with ipi, and I looked up the medical policies of my insurance. They said that they would approve further doses after the initial four (4 was the standard at that time….maybe something changed and I missed it?) only if there was progression.
-Bill
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- February 4, 2016 at 2:42 am
This is sad to say, but it may depend in part on your insurance. I did the 4 treatments of ipi last winter, and there was no talk of any follow-up doses. The plan was always that if there was progression following those 4, the next step would be to Keytruda, which I have been getting since July. And in my case at least it is working better than ipi, with almost no side effects.
But I had heard about maintenance dosing with ipi, and I looked up the medical policies of my insurance. They said that they would approve further doses after the initial four (4 was the standard at that time….maybe something changed and I missed it?) only if there was progression.
-Bill
-
- February 4, 2016 at 2:42 am
This is sad to say, but it may depend in part on your insurance. I did the 4 treatments of ipi last winter, and there was no talk of any follow-up doses. The plan was always that if there was progression following those 4, the next step would be to Keytruda, which I have been getting since July. And in my case at least it is working better than ipi, with almost no side effects.
But I had heard about maintenance dosing with ipi, and I looked up the medical policies of my insurance. They said that they would approve further doses after the initial four (4 was the standard at that time….maybe something changed and I missed it?) only if there was progression.
-Bill
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- February 4, 2016 at 3:12 am
My husband had 4 doses of 10 mg ipi as part of a clinical trial. He had "progression" which was a small mets in his liver which was treated with microwave ablation. He had no further mets and no further ipi as he was removed from the trial. He is NED. He would have chosen maintenance doses at the time if he could. Fortunately, it worked out.
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- February 4, 2016 at 3:12 am
My husband had 4 doses of 10 mg ipi as part of a clinical trial. He had "progression" which was a small mets in his liver which was treated with microwave ablation. He had no further mets and no further ipi as he was removed from the trial. He is NED. He would have chosen maintenance doses at the time if he could. Fortunately, it worked out.
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- February 4, 2016 at 3:12 am
My husband had 4 doses of 10 mg ipi as part of a clinical trial. He had "progression" which was a small mets in his liver which was treated with microwave ablation. He had no further mets and no further ipi as he was removed from the trial. He is NED. He would have chosen maintenance doses at the time if he could. Fortunately, it worked out.
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- February 4, 2016 at 6:08 am
Hi Greg. I am in the UK. Here we use 3mg/kg, four doses, each three weeks apart. There is no suggestion of follow up doses. My oncologist, a melanoma specialist, explained that Ipi is a 'one off'' and that I would be a responder or not. If I responded my Tcells would be 'reset' and able to 'see' the tumour cells.
If your oncologist has not mentioned follow-up it may be that your oncologist agrees with this opinion.
In fact, that was one of the things that attracted me to Ipi. I am hosiptal phobic but I decided that I could manage four visits to the oncology outpatients unit. It was hard but I did it!
I would say be cautious of drug company's information. They want to selll drugs, so in a case like this, where the data is recent and varied, they may be inclined to emphasise the scenario that requires the most drug,
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- February 4, 2016 at 6:08 am
Hi Greg. I am in the UK. Here we use 3mg/kg, four doses, each three weeks apart. There is no suggestion of follow up doses. My oncologist, a melanoma specialist, explained that Ipi is a 'one off'' and that I would be a responder or not. If I responded my Tcells would be 'reset' and able to 'see' the tumour cells.
If your oncologist has not mentioned follow-up it may be that your oncologist agrees with this opinion.
In fact, that was one of the things that attracted me to Ipi. I am hosiptal phobic but I decided that I could manage four visits to the oncology outpatients unit. It was hard but I did it!
I would say be cautious of drug company's information. They want to selll drugs, so in a case like this, where the data is recent and varied, they may be inclined to emphasise the scenario that requires the most drug,
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- February 4, 2016 at 12:48 pm
Hi there,
i too live in UK and question i was going to ask my consultant was ippi maintance. i have had 2 scans from completing ippi in june 2015 stable scans and tumour shrinkage. i am not braf and find all the who can have what treatments a little hard to take in. if you have responded to treatment surly given maintance dose would be helpful if side effects are ok. on trial of ippi maintance dose offerd and some folks went ned. find it hard.
Scooby123
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- February 4, 2016 at 12:48 pm
Hi there,
i too live in UK and question i was going to ask my consultant was ippi maintance. i have had 2 scans from completing ippi in june 2015 stable scans and tumour shrinkage. i am not braf and find all the who can have what treatments a little hard to take in. if you have responded to treatment surly given maintance dose would be helpful if side effects are ok. on trial of ippi maintance dose offerd and some folks went ned. find it hard.
Scooby123
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- February 4, 2016 at 6:50 pm
I have tried to contact you directly. In case that does not work, here is part of what I wrote.
I have had the new 'standard' ipi treatment in the UK. It does not have maintenences doses.
As I understand it, your T cells will either be affected by the Ipi or not. If they are, you are an Ipi reponder and the effect on the T cells lasts long after you take the last dose if Ipi.
My tumours shrank between October 2015 and January 2016, even though I had finished Ipi in June 2015.
-
- February 4, 2016 at 6:50 pm
I have tried to contact you directly. In case that does not work, here is part of what I wrote.
I have had the new 'standard' ipi treatment in the UK. It does not have maintenences doses.
As I understand it, your T cells will either be affected by the Ipi or not. If they are, you are an Ipi reponder and the effect on the T cells lasts long after you take the last dose if Ipi.
My tumours shrank between October 2015 and January 2016, even though I had finished Ipi in June 2015.
-
- February 4, 2016 at 6:50 pm
I have tried to contact you directly. In case that does not work, here is part of what I wrote.
I have had the new 'standard' ipi treatment in the UK. It does not have maintenences doses.
As I understand it, your T cells will either be affected by the Ipi or not. If they are, you are an Ipi reponder and the effect on the T cells lasts long after you take the last dose if Ipi.
My tumours shrank between October 2015 and January 2016, even though I had finished Ipi in June 2015.
-
- February 5, 2016 at 2:01 am
I have a all-consuming, clinically disgnosed phobia of doctors and hospitals. My specilist has managed to treat me without me every being admitted to hospital.
That type of surgery required a three day admission. For me, Ipi was a better first choice.
You are probably thinking 'get over it'. I have spent the last six months getting psychotherapy (CAT and EMDR).
Menwhile the I have turned out to be an Ipi responder. Hurrah!
-
- February 5, 2016 at 2:01 am
I have a all-consuming, clinically disgnosed phobia of doctors and hospitals. My specilist has managed to treat me without me every being admitted to hospital.
That type of surgery required a three day admission. For me, Ipi was a better first choice.
You are probably thinking 'get over it'. I have spent the last six months getting psychotherapy (CAT and EMDR).
Menwhile the I have turned out to be an Ipi responder. Hurrah!
-
- February 5, 2016 at 2:01 am
I have a all-consuming, clinically disgnosed phobia of doctors and hospitals. My specilist has managed to treat me without me every being admitted to hospital.
That type of surgery required a three day admission. For me, Ipi was a better first choice.
You are probably thinking 'get over it'. I have spent the last six months getting psychotherapy (CAT and EMDR).
Menwhile the I have turned out to be an Ipi responder. Hurrah!
-
- February 4, 2016 at 12:48 pm
Hi there,
i too live in UK and question i was going to ask my consultant was ippi maintance. i have had 2 scans from completing ippi in june 2015 stable scans and tumour shrinkage. i am not braf and find all the who can have what treatments a little hard to take in. if you have responded to treatment surly given maintance dose would be helpful if side effects are ok. on trial of ippi maintance dose offerd and some folks went ned. find it hard.
Scooby123
-
- February 4, 2016 at 6:08 am
Hi Greg. I am in the UK. Here we use 3mg/kg, four doses, each three weeks apart. There is no suggestion of follow up doses. My oncologist, a melanoma specialist, explained that Ipi is a 'one off'' and that I would be a responder or not. If I responded my Tcells would be 'reset' and able to 'see' the tumour cells.
If your oncologist has not mentioned follow-up it may be that your oncologist agrees with this opinion.
In fact, that was one of the things that attracted me to Ipi. I am hosiptal phobic but I decided that I could manage four visits to the oncology outpatients unit. It was hard but I did it!
I would say be cautious of drug company's information. They want to selll drugs, so in a case like this, where the data is recent and varied, they may be inclined to emphasise the scenario that requires the most drug,
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