› Forums › General Melanoma Community › I have a IPI question for MichealFL or anyone else who would like to answer
- This topic has 8 replies, 4 voices, and was last updated 12 years, 10 months ago by
dawn dion.
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- June 11, 2011 at 12:57 am
Hi All
I have a question – something that Traci Lee posted about the other day and it has had me wondering ever since.
I posted a reply to MichealFL in her post but it probably got lost in all of threads.
Traci was talking about nodes getting worse on IPI and Micheal said something about them getting worse before they get better. Next paragraph is the question I posted.:
Hi All
I have a question – something that Traci Lee posted about the other day and it has had me wondering ever since.
I posted a reply to MichealFL in her post but it probably got lost in all of threads.
Traci was talking about nodes getting worse on IPI and Micheal said something about them getting worse before they get better. Next paragraph is the question I posted.:
Micheal you just said something that I have often wondered about. I was on ipi and a month after I started had a new met. I was Stage 3 adjuvent care when I did the IPI. My question has always been – How do they know the ip wasn't working? I have never gotten a satisfactory answer to that, especially when they told me that the met was probabaly already there when I started IPI but to small to be seen on the CT scan. The other thing you just said was "don't get the flu or a sinus infection" – I did get sick during that time frame – all of the glands in my neck where swollen, and I have never in my entire life, even when I was a kid, had swollen glands. I remember thinking while I was sick I hope this isn't a sign of something worse to come. What if anything does that have to do with it?
Anyway just something I have been thinking about – I am past IPI and on to BRAF/MEK now but it is always stuck in my head. If anyone wants to chime in I'd appreciate it.
Hugs and Smiles
Dawn
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- June 11, 2011 at 1:06 am
Hi Dawn,
In my post, my husband was sick with the flu and a sinus infection, the day of my first Ipi dose and for about a week afterwards. Michael was telling me not to catch the yuck from hubby.
My husband and I were joking that other than my cancer, I'm healthy as a horse, while HE'S always the one who gets sick.
I also wondered if my nodes were swollen while fighting off all his lousy germs, or if the Ipi is already working (I've read that often the nodes get worse, before shrinking).
My neck now looks like a stegasaurus. Frankly, I'm glad to be getting my next Ipi dose on Thursday, in the hopes it IS working and the swelling will begin to go down.
TracyLee
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- June 11, 2011 at 1:39 am
Hi,
I was in an Ipi clinical trial for unresectable melanoma starting in December 2010, and had four infusions. I had new melanomas growing on a daily basis…..see above post to TracyLee, and my oncologist said new melanomas were "acceptable" per trial guidelines set by Bristol Myers Squibb for the first 12 weeks…ie first four infusions of Ipi. My melanoma tumors did stop showing up daily and in fact eventually and rather quickly ALL reabsorbed so that by 2 weeks post treatment they were gone except for a purplish mark on my skin….12 weeks later even those purplish marks are gone. So are you saying you got a new met (where?) and they stopped the Ipi? Did you go to stage 4? I am sorry, I didnt read your profile before posting.
Vermont_Donna, stage 3a NED
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- June 11, 2011 at 10:32 am
Thanks guys for responding – I have just always been curious and as I said never got a clear answer as to why.
Donna, yes I went stage 4 and maybe that is why it stopped. I have only ever had two "spots" the origional one one my arm and then the lymphnode in my chest wall. which is really not that far away but I guess different lymph system and internal so hence the stage 4. Yes, they stopped the ipi and told me that it "failed" to work, but again I have read your posts everytime and it always makes me wonder. My Dr said the met was probably there in the scan the week I started ipi but to small to see – so why would they take me off and why wouldn't they use they ipi for stage 4 like they have for others? I don't know it is just so confusing.
Anyway thanks again for answering my question.
Hugs and Smiles
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- June 11, 2011 at 10:32 am
Thanks guys for responding – I have just always been curious and as I said never got a clear answer as to why.
Donna, yes I went stage 4 and maybe that is why it stopped. I have only ever had two "spots" the origional one one my arm and then the lymphnode in my chest wall. which is really not that far away but I guess different lymph system and internal so hence the stage 4. Yes, they stopped the ipi and told me that it "failed" to work, but again I have read your posts everytime and it always makes me wonder. My Dr said the met was probably there in the scan the week I started ipi but to small to see – so why would they take me off and why wouldn't they use they ipi for stage 4 like they have for others? I don't know it is just so confusing.
Anyway thanks again for answering my question.
Hugs and Smiles
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- June 11, 2011 at 1:39 am
Hi,
I was in an Ipi clinical trial for unresectable melanoma starting in December 2010, and had four infusions. I had new melanomas growing on a daily basis…..see above post to TracyLee, and my oncologist said new melanomas were "acceptable" per trial guidelines set by Bristol Myers Squibb for the first 12 weeks…ie first four infusions of Ipi. My melanoma tumors did stop showing up daily and in fact eventually and rather quickly ALL reabsorbed so that by 2 weeks post treatment they were gone except for a purplish mark on my skin….12 weeks later even those purplish marks are gone. So are you saying you got a new met (where?) and they stopped the Ipi? Did you go to stage 4? I am sorry, I didnt read your profile before posting.
Vermont_Donna, stage 3a NED
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- June 11, 2011 at 1:06 am
Hi Dawn,
In my post, my husband was sick with the flu and a sinus infection, the day of my first Ipi dose and for about a week afterwards. Michael was telling me not to catch the yuck from hubby.
My husband and I were joking that other than my cancer, I'm healthy as a horse, while HE'S always the one who gets sick.
I also wondered if my nodes were swollen while fighting off all his lousy germs, or if the Ipi is already working (I've read that often the nodes get worse, before shrinking).
My neck now looks like a stegasaurus. Frankly, I'm glad to be getting my next Ipi dose on Thursday, in the hopes it IS working and the swelling will begin to go down.
TracyLee
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- June 11, 2011 at 1:42 am
Sorry, Dawn I did miss that response.
It is my understanding that while on Yervoy, it may take some time to work, so tumors may not shrink immediately, and may even grow during this time, thus making it hard to tell if the drug is working until scans are performed.
I believe the general protocol is scans at 12 weeks, and after that,18 weeks. (depending on the initial result) A mixed response at 12 weeks may warrant a quicker follow-up to see if there was a continuing or later response, as I believe some have had late responses around week 18-20.
I was also telling TracyLee not to come down with any illness. Nothing in relation to treatment, just for her not to catch any bugs.
Michael
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- June 11, 2011 at 1:42 am
Sorry, Dawn I did miss that response.
It is my understanding that while on Yervoy, it may take some time to work, so tumors may not shrink immediately, and may even grow during this time, thus making it hard to tell if the drug is working until scans are performed.
I believe the general protocol is scans at 12 weeks, and after that,18 weeks. (depending on the initial result) A mixed response at 12 weeks may warrant a quicker follow-up to see if there was a continuing or later response, as I believe some have had late responses around week 18-20.
I was also telling TracyLee not to come down with any illness. Nothing in relation to treatment, just for her not to catch any bugs.
Michael
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