› Forums › General Melanoma Community › Radiation Breakage or Melanoma Progression?
- This topic has 8 replies, 3 voices, and was last updated 8 years, 3 months ago by
debwray.
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- February 15, 2017 at 6:59 pm
My mom had her first dose of Keytruda last Wednesday (Feb. 8) after 5 doses of radiation (which ended Jan. 27), with mostly fatigue and nausea as side effects so far. The primary anal mass has noticeably shrank since she started radiation, but there are ten or so new little white bumps all over the anal opening (they look like canker sores). This morning, there are some new ones underneath an external hemorrhoid.
I sent a picture to her oncologist and he thought it looked like melanoma from the picture. The white bumps make it painful and stings when she urinates or tries to put ointment on it. Has anyone else experienced this, and did it turn out to be melanoma? Is it possible for the primary to get smaller while there is progression elsewhere?
I always thought that melanoma wasn't painful, which is why I was hoping it was radiation breakage. Also, the outbreak happened pretty suddenly and quickly (we see that area every day, so we would have seen them if they existed all along. I know that it may take a while for immunotherapies to kick in, but these new developments make us pretty anxious.
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- February 16, 2017 at 10:36 am
If I were in your shoes I would make an appointment with her oncologist to check it out as soon as possible. Don't be afraid to see that doctor as often as you think is necessary. It is very important at this point to self advocate and never be afraid to ask for an appointment.
I wish you all the best – Paul
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- February 16, 2017 at 10:36 am
If I were in your shoes I would make an appointment with her oncologist to check it out as soon as possible. Don't be afraid to see that doctor as often as you think is necessary. It is very important at this point to self advocate and never be afraid to ask for an appointment.
I wish you all the best – Paul
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- February 16, 2017 at 11:13 am
Hi Cindy,
This is so unusual a type of melanoma I think we all struggle to have relevant experience.
However, the pd1 drugs can result in quick changes.. Flooding immune cells to sites of micro disease..doesn't reallly sound like a fungal thing. Would taking cystitis type meds to make the urine more alkaline help a bit.
Hope you get some answers soon.
Best wishes
Deb
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- February 16, 2017 at 11:04 pm
Thanks Deb and Paul. Sometimes I forget that this melanoma is not very common. It's been tough sorting out what is "normal" for treatment and what we should actually be concerned about. On the one hand, we don't want to keep bothering the doctors over every little thing to the point that they don't take us seriously when something is actually an issue. On the other, every little thing freaks us out.
I showed the pictures to her radiation oncologist, and she thought it looked like typical radiation breakage. Either way, she said there is nothing to do right now except to give the Keytruda a shot. We have an appointment next week, so we will have them examine it in person at that time.
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- February 17, 2017 at 7:36 pm
Hi Cindy,
Take your point about not wanting to bother the docs too much- but with immunotherapy side effects they need to be picked up , monitored and managed sooner rather than later. Keep on communicating and then the docs can decide if it is important or not. Sounds like the radiation doc has been helpful,and the next appointment isn't far away. One day at a time and all that…
Best wishes
Deb
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- February 17, 2017 at 7:36 pm
Hi Cindy,
Take your point about not wanting to bother the docs too much- but with immunotherapy side effects they need to be picked up , monitored and managed sooner rather than later. Keep on communicating and then the docs can decide if it is important or not. Sounds like the radiation doc has been helpful,and the next appointment isn't far away. One day at a time and all that…
Best wishes
Deb
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- February 16, 2017 at 11:04 pm
Thanks Deb and Paul. Sometimes I forget that this melanoma is not very common. It's been tough sorting out what is "normal" for treatment and what we should actually be concerned about. On the one hand, we don't want to keep bothering the doctors over every little thing to the point that they don't take us seriously when something is actually an issue. On the other, every little thing freaks us out.
I showed the pictures to her radiation oncologist, and she thought it looked like typical radiation breakage. Either way, she said there is nothing to do right now except to give the Keytruda a shot. We have an appointment next week, so we will have them examine it in person at that time.
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- February 16, 2017 at 11:13 am
Hi Cindy,
This is so unusual a type of melanoma I think we all struggle to have relevant experience.
However, the pd1 drugs can result in quick changes.. Flooding immune cells to sites of micro disease..doesn't reallly sound like a fungal thing. Would taking cystitis type meds to make the urine more alkaline help a bit.
Hope you get some answers soon.
Best wishes
Deb
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