› Forums › General Melanoma Community › ipi, then BRAF, blurry vision
- This topic has 18 replies, 7 voices, and was last updated 12 years, 8 months ago by
FormerCaregiver.
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- August 23, 2011 at 9:20 pm
Hi y'all,
Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!
Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.
Then, last night…blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.
Hi y'all,
Well, I am definitely a BRAF responder, and we all strongly suspect a delayed ipi/Yervoy responder!
Nasty/ugly but tolerable rash from below my neck, down my entire body. Began last week, so virulent that my local onc in conjunction with U of Penn, took me off of BRAF for a day or so.
Then, last night…blurry vision in my right eye. This seems more of a ipi side effect than BRAF. Called local onc, and U of Penn. Hauled to ER, assessed, seen by eye doctor today. It is slowly resolving.
My eyesight is terrible anyway (I'm an 11 diopter correction!), so I don't mess around with my eyesight.
The eye doctor did NOT feel it was a side effect. Personally, I do, particularly in conjunction with the rash.
Thoughts? Anyone else have sudden blurry vision, which resolved fairly quickly?
TracyLee
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- August 24, 2011 at 12:44 am
TracyLee,
I remember Rocco posting about eye issues, so maybe she will chime in or direct your post to her.
Sounds good to me though because she was a complete responder.
Rebecca
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- August 24, 2011 at 12:44 am
TracyLee,
I remember Rocco posting about eye issues, so maybe she will chime in or direct your post to her.
Sounds good to me though because she was a complete responder.
Rebecca
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- August 24, 2011 at 1:37 am
I was on phase II BRAF trial (PLX) last year for 10 months and had constant eye issues. Iritis, episcleritis, scleritis…you name it, painful, blurry, light sensitive, watering, red in the white where all symptoms as different points.. Spend six months on high octane steroid drops (Durezol) and it resolved immediately when I stopped PLX. In the diagnosis process we discovered I was HLA B27+ which can be another reason that one would have chronic scleritis as an auto immune disease—leaves me wondering what the someday to be discovered tie is between genetics, auto immune and melanoma. Happy to provide more info if you would like. On Ipi now with no eye issues. Hmmmm.
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- August 24, 2011 at 1:37 am
I was on phase II BRAF trial (PLX) last year for 10 months and had constant eye issues. Iritis, episcleritis, scleritis…you name it, painful, blurry, light sensitive, watering, red in the white where all symptoms as different points.. Spend six months on high octane steroid drops (Durezol) and it resolved immediately when I stopped PLX. In the diagnosis process we discovered I was HLA B27+ which can be another reason that one would have chronic scleritis as an auto immune disease—leaves me wondering what the someday to be discovered tie is between genetics, auto immune and melanoma. Happy to provide more info if you would like. On Ipi now with no eye issues. Hmmmm.
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- August 24, 2011 at 1:37 am
I was on phase II BRAF trial (PLX) last year for 10 months and had constant eye issues. Iritis, episcleritis, scleritis…you name it, painful, blurry, light sensitive, watering, red in the white where all symptoms as different points.. Spend six months on high octane steroid drops (Durezol) and it resolved immediately when I stopped PLX. In the diagnosis process we discovered I was HLA B27+ which can be another reason that one would have chronic scleritis as an auto immune disease—leaves me wondering what the someday to be discovered tie is between genetics, auto immune and melanoma. Happy to provide more info if you would like. On Ipi now with no eye issues. Hmmmm.
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- August 24, 2011 at 2:12 am
Interesting about the auto immune issues and melanoma. My husband had auto immune issues after IL-2 and he responded. His thyroid was the problem.
There is definitely a link between getting some auto immune issues and response to treatment.
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- August 24, 2011 at 4:39 pm
we will find lots more side effects as more people will be on zelboraf… chemo gave me among other things heart rythym probs… so not looking forward to rashes, eye probs and hair loss or who knows what else when they put me on zelboraf…but the alternatives aren't that great either….
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- August 24, 2011 at 8:26 pm
In the documents I received for my ipi clinical trial, eye problems was one of the side effects for a very small percentage of people.
Inflammation of the eyes. Symptoms may include:
- blurry vision, double vision, or other vision problems
- eye pain or redness
Since both of these drugs are still in trials, Boots is right, more side effects will be found and of course, the numbers of responses for both these drugs will continue to rise.
Lisa
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- August 24, 2011 at 8:26 pm
In the documents I received for my ipi clinical trial, eye problems was one of the side effects for a very small percentage of people.
Inflammation of the eyes. Symptoms may include:
- blurry vision, double vision, or other vision problems
- eye pain or redness
Since both of these drugs are still in trials, Boots is right, more side effects will be found and of course, the numbers of responses for both these drugs will continue to rise.
Lisa
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- August 24, 2011 at 4:39 pm
we will find lots more side effects as more people will be on zelboraf… chemo gave me among other things heart rythym probs… so not looking forward to rashes, eye probs and hair loss or who knows what else when they put me on zelboraf…but the alternatives aren't that great either….
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- August 24, 2011 at 2:12 am
Interesting about the auto immune issues and melanoma. My husband had auto immune issues after IL-2 and he responded. His thyroid was the problem.
There is definitely a link between getting some auto immune issues and response to treatment.
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- August 24, 2011 at 1:37 am
I was on phase II BRAF trial (PLX) last year for 10 months and had constant eye issues. Iritis, episcleritis, scleritis…you name it, painful, blurry, light sensitive, watering, red in the white where all symptoms as different points.. Spend six months on high octane steroid drops (Durezol) and it resolved immediately when I stopped PLX. In the diagnosis process we discovered I was HLA B27+ which can be another reason that one would have chronic scleritis as an auto immune disease—leaves me wondering what the someday to be discovered tie is between genetics, auto immune and melanoma. Happy to provide more info if you would like. On Ipi now with no eye issues. Hmmmm.
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- August 25, 2011 at 5:19 am
Very interesting to read! Glad you're doing a bit better now.
My husband's eye became painful a month or two before he was diagnosed with stage 4 melanoma. Throughout the 6 months of starting chemo, he had iritis, neovascular glaucoma, painful light sensitivity and a detached retina. This is all in his left eye. He is still hoping to regain his sight in this eye.
He started the plx trial Sept 2010 but got the chemo arm. The chemo worked great on his tumors but his eye kept getting worse. Now that he has crossed over to the BRAF inhibitor drug his eye has been getting better and feels a lot better.
We have wondered if the eye pain/problems are related to an auto-immune response or from melanoma. Melanoma is known to metastisize to the eye since there are pigmented cells that line the eye and are in the iris. For many months we had never been able to find cancer cells in the eye with many many tests including taking out the vitreous fluid from the eye for pathology.
Recently a melanoma tumor grew between his eye lid and eye ball. We had it surgically removed since it was growing so fast. Since being on BRAF it hasn't grown back.
As far as we can tell BRAF has really helped his eye on several accounts. (now if he can just handle all the joint pain to keep going on this drug. )
Thanks for sharing your experience.
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- August 25, 2011 at 1:28 pm
Amy, I am sorry to read of your husband's eye problems. However, it is encouraging that
the BRAF inhibitor has been effective in keeping melanoma under control.I assume that he is on PLX4032. Here is a link to some info about it:
http://www.genomeweb.com/dxpgx/plexxikon-roche-file-rxdx-application-plx4032-cobas-mutation-test-metastatic-melThis article mentions that a number of side effects could occur in some people. It
states that the "most frequent Grade 3 adverse event observed in clinical trials of
PLX4032 was cutaneous squamous cell carcinoma, a common skin cancer treated by local
excision. Other common adverse events seen in trials were rash, increased sun
sensitivity, joint pain, hair loss, and fatigue. Possible serious side effects of
PLX4032 include liver issues, abnormal heartbeats, and allergic reactions."I don't know if ordinary aspirin would help with the joint pain, but it works well with
generalised muscle pain. Perhaps this could be worth discussing with your husband's
oncologist?Best wishes
Frank from Australia
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- August 25, 2011 at 1:28 pm
Amy, I am sorry to read of your husband's eye problems. However, it is encouraging that
the BRAF inhibitor has been effective in keeping melanoma under control.I assume that he is on PLX4032. Here is a link to some info about it:
http://www.genomeweb.com/dxpgx/plexxikon-roche-file-rxdx-application-plx4032-cobas-mutation-test-metastatic-melThis article mentions that a number of side effects could occur in some people. It
states that the "most frequent Grade 3 adverse event observed in clinical trials of
PLX4032 was cutaneous squamous cell carcinoma, a common skin cancer treated by local
excision. Other common adverse events seen in trials were rash, increased sun
sensitivity, joint pain, hair loss, and fatigue. Possible serious side effects of
PLX4032 include liver issues, abnormal heartbeats, and allergic reactions."I don't know if ordinary aspirin would help with the joint pain, but it works well with
generalised muscle pain. Perhaps this could be worth discussing with your husband's
oncologist?Best wishes
Frank from Australia
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- August 25, 2011 at 5:19 am
Very interesting to read! Glad you're doing a bit better now.
My husband's eye became painful a month or two before he was diagnosed with stage 4 melanoma. Throughout the 6 months of starting chemo, he had iritis, neovascular glaucoma, painful light sensitivity and a detached retina. This is all in his left eye. He is still hoping to regain his sight in this eye.
He started the plx trial Sept 2010 but got the chemo arm. The chemo worked great on his tumors but his eye kept getting worse. Now that he has crossed over to the BRAF inhibitor drug his eye has been getting better and feels a lot better.
We have wondered if the eye pain/problems are related to an auto-immune response or from melanoma. Melanoma is known to metastisize to the eye since there are pigmented cells that line the eye and are in the iris. For many months we had never been able to find cancer cells in the eye with many many tests including taking out the vitreous fluid from the eye for pathology.
Recently a melanoma tumor grew between his eye lid and eye ball. We had it surgically removed since it was growing so fast. Since being on BRAF it hasn't grown back.
As far as we can tell BRAF has really helped his eye on several accounts. (now if he can just handle all the joint pain to keep going on this drug. )
Thanks for sharing your experience.
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