› Forums › General Melanoma Community › Treatment plan is made
- This topic has 150 replies, 8 voices, and was last updated 9 years, 6 months ago by
jamieth29.
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- July 15, 2015 at 1:00 pm
Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.
In my case, average one year left. Let's see how long I can make it.
Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.
Had four treatments Kemo 17 years ago, I think I am ready for any side effect.
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- July 15, 2015 at 4:20 pm
D.Feng
your not included in that average! I hope things go well for you…what plan of treatment are you getting?-
- July 15, 2015 at 5:25 pm
Hi D. Feng,
That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV. Wishing you the best!
I saw on your profile that you originally had ocular melanoma. Do the doctors think that that was your primary? As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.
My father had OM and tried pembro while it was still offered as a trial. His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try." I don't know if the evidence has advanced since then, but I figure Dr Sato would know.
I hope the combo works for you!
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- July 15, 2015 at 5:25 pm
Hi D. Feng,
That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV. Wishing you the best!
I saw on your profile that you originally had ocular melanoma. Do the doctors think that that was your primary? As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.
My father had OM and tried pembro while it was still offered as a trial. His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try." I don't know if the evidence has advanced since then, but I figure Dr Sato would know.
I hope the combo works for you!
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- July 15, 2015 at 5:25 pm
Hi D. Feng,
That trial certainly seems like the best treatment out there right now, at least for garden-variety stage IV. Wishing you the best!
I saw on your profile that you originally had ocular melanoma. Do the doctors think that that was your primary? As you probably already know, Dr. Takami Sato at Thomas Jefferson in Philadelphia is one of the leading specialists in metastatic OM; you might consider getting an opinion from him about a Plan B.
My father had OM and tried pembro while it was still offered as a trial. His specialist said, "we have no evidence that this works in OM, but we also have no evidence it *doesn't* work, and since the side effects are low, let's give it a try." I don't know if the evidence has advanced since then, but I figure Dr Sato would know.
I hope the combo works for you!
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- July 15, 2015 at 6:17 pm
Welcome to the club!!! 18months on combination and still smiling!!!! Ed
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- July 15, 2015 at 6:17 pm
Welcome to the club!!! 18months on combination and still smiling!!!! Ed
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- July 15, 2015 at 6:17 pm
Welcome to the club!!! 18months on combination and still smiling!!!! Ed
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- July 15, 2015 at 5:10 pm
D. Feng,
That is probably the best treatment combo going!!! Congrats and good luck! Celeste
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- July 16, 2015 at 5:48 pm
Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.
Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…
So it would have to be next Tuesday. Hope fives days waiting won't make big difference.
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- July 16, 2015 at 5:48 pm
Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.
Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…
So it would have to be next Tuesday. Hope fives days waiting won't make big difference.
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- July 23, 2015 at 3:02 pm
Did first infusion on Tuesday, today is the third from it.
Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.
During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.
Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.
Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.
Today I drive to work alone. Still a little weak so I am not going to do labor job today.
Summary, the side effect is not very tough yet to me.
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- July 24, 2015 at 11:42 am
Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.
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- July 24, 2015 at 11:42 am
Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.
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- July 24, 2015 at 11:42 am
Wow, you've started already. Glad the side effects are manageable, amazing that you still went to work. Sounds like you are doing well. And perhaps some of those initial things are stress related, too, and might settle. You seem a very pragmatic person, thanks for the update and I hope you get some great results.
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- July 23, 2015 at 3:02 pm
Did first infusion on Tuesday, today is the third from it.
Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.
During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.
Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.
Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.
Today I drive to work alone. Still a little weak so I am not going to do labor job today.
Summary, the side effect is not very tough yet to me.
-
- July 23, 2015 at 3:02 pm
Did first infusion on Tuesday, today is the third from it.
Had a few pinch in vein when the medicine was given, and inside body feeling warm, not burning. No obvious negative symptoms during first 6 hours after infusion.
During first night, got low fever, diarrhea and lot of nightmare. Sweat a lot, thirsty and muscle aches. But to tell the truth, not that horrible at all.
Felt tired in the coming morning, and hungry. Still have a very good appetite, and then try to eat a lot healthy food. Did a little walking outside, and most time was resting and resting.
Second night was a lot better. Got a sound sleep. Interrupted by diarrhea once but as long as my head touched the pillow, everything in ease.
Today I drive to work alone. Still a little weak so I am not going to do labor job today.
Summary, the side effect is not very tough yet to me.
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- July 16, 2015 at 5:48 pm
Paper work signed on Tuesday, treatment appointed on Thursday but the insurance hadn't cleared before Wednesday evening, so they have to put off the treatment to next Tuesday.
Just got call that the insurance company approved the treatment today, early Thursday, the nurse tried to put me back to today's queue but the facility is full of patients, all schedule is filled…
So it would have to be next Tuesday. Hope fives days waiting won't make big difference.
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- July 29, 2015 at 1:23 am
One week after the first infusion.
Small rashes starts to pop out and causing itching. The weather is hot so make it worse.
Experience more diarrhea today, and the scars from last surgery are itching too.
Have to intake enough fluid and electrolyte replenisher.
Still activily working on my job.
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- July 29, 2015 at 1:23 am
One week after the first infusion.
Small rashes starts to pop out and causing itching. The weather is hot so make it worse.
Experience more diarrhea today, and the scars from last surgery are itching too.
Have to intake enough fluid and electrolyte replenisher.
Still activily working on my job.
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- July 29, 2015 at 1:23 am
One week after the first infusion.
Small rashes starts to pop out and causing itching. The weather is hot so make it worse.
Experience more diarrhea today, and the scars from last surgery are itching too.
Have to intake enough fluid and electrolyte replenisher.
Still activily working on my job.
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- July 30, 2015 at 2:18 pm
weird stomachache this early morning after some kind of hungry feeling waked me.
not safe to drive to work under this pain so my wife drove me.
let me see how it is going.
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- August 2, 2015 at 9:23 am
I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!
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- August 4, 2015 at 11:12 pm
Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page. That would be one place to record all of your progress as it happens. Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history. Just something to consider.
Cheers
Maggie
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- August 4, 2015 at 11:12 pm
Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page. That would be one place to record all of your progress as it happens. Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history. Just something to consider.
Cheers
Maggie
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- August 4, 2015 at 11:12 pm
Another alternative to updating this thread (which may be lost to others as it falls further and further back) is to do the updates on your profile page. That would be one place to record all of your progress as it happens. Then when you comment on someone else's post, if they are interested in your history, they just click your username and they'll see your complete history. Just something to consider.
Cheers
Maggie
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- August 2, 2015 at 9:23 am
I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!
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- August 2, 2015 at 9:23 am
I second that, DFeng. I didn't realise you were updating this older thread. Don't be afraid to update as a new thread – more people will see it and i think lots of people would be interested in your news but may not find this older thread. All the best, I too admire your determination. I sense a very logical mind!
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- August 3, 2015 at 12:29 pm
The rashes were really itching these two days. Especially those at forearm and neck.
Cold water washing helps.
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- August 5, 2015 at 8:00 pm
Back muscle ache this morning. Combined with some kinds of pain from liver area. Try to do soft massage and it is going away.
In the afternoon, pain inside are gone. Muscle ache didn't leave totally but it was reducing a lot.
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- August 8, 2015 at 2:00 am
stomachache again. Almost spend half day in bed. In the afternoon it starts to go away, but still not totally.
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- August 11, 2015 at 12:26 am
Hope that the side effects are because the drugs are working for you. Starting the braf inhibitors tomorrow for a month to hopefully knock down what disease i have then surgically go after it. Here’s to fighting the good fight my friend! -
- August 18, 2015 at 11:47 pm
I just did my second infusion today and back home.
My rash was not 100% gone, so at beginning the nurse was still very concern about it.
After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.
So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.
Let us see how I am going to be tonight.
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- August 25, 2015 at 9:08 pm
I noticed that my blood is thinner? or skin is eaiser to bleed.
During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.
A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.
And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.
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- August 25, 2015 at 11:34 pm
Dfeng,
I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
Best of luck,
Jamie -
- August 25, 2015 at 11:34 pm
Dfeng,
I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
Best of luck,
Jamie -
- August 25, 2015 at 11:34 pm
Dfeng,
I’m sure you told your doctor about the black stuff…if not i would immediately. I have read about ipi and digestive track issues and ipi is noted for that. From what i read i wouldn’t worry about being treated for adverse events. Studies have shown missing a dose or taking steroids to stop the event is much better than letting it get out of hand and trying to tough it out.
Best of luck,
Jamie -
- August 25, 2015 at 9:08 pm
I noticed that my blood is thinner? or skin is eaiser to bleed.
During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.
A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.
And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.
-
- August 25, 2015 at 9:08 pm
I noticed that my blood is thinner? or skin is eaiser to bleed.
During last infusion, at the first try the nurse didn't make it, so she left a .. on my arm with bandit without pressure. Usually it became black and blue in few days, but mine… still red in a week.
A small cut on my nose bleed crazily. I have to put something pressed on it to stop it.
And the worst is I noticed one day I have black excrement, looked like bleeding in stomach, I think it is because of my surgery wound again since I felt pain in that area the day before.
-
- August 18, 2015 at 11:47 pm
I just did my second infusion today and back home.
My rash was not 100% gone, so at beginning the nurse was still very concern about it.
After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.
So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.
Let us see how I am going to be tonight.
-
- August 18, 2015 at 11:47 pm
I just did my second infusion today and back home.
My rash was not 100% gone, so at beginning the nurse was still very concern about it.
After my doctor and another specialist checked again they agree what left were not all due to the treatment and those old one were going away, so I was cleared for the treatment.
So far so good. I can feel that I am weaker than what I was at the first infusion, but the med is having less impact on me. I can drive home alone.
Let us see how I am going to be tonight.
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- September 9, 2015 at 7:53 pm
The third infusion is done.
Less fever and headache, nightmare.
But rushes jump out immediately.
Very tired on the second day.
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- September 30, 2015 at 4:48 pm
The second day of the last combo infusion and I am still at home resting.
It might because of the weather, but I feel very tired and do not have appetite.
Low fever, sweating, rashes, so far.
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