› Forums › General Melanoma Community › pain/swelling – 1st Ipi on Friday
- This topic has 20 replies, 10 voices, and was last updated 14 years, 8 months ago by
NicOz.
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- May 26, 2011 at 11:33 am
Hi y'all,
I've never had any pain before. Now, my neck is very tight, the node right under my jaw is hard as a rock, and I'm just a mess today. It hurts to (gently/slowly) turn my neck now.
I'm starting Ipi/Yervoy tomorrow. I have a call into my onc, but I'm really down right this minute. From other Ipi posts, I'm expecting some swelling and pain AFTER Ipi begins, to show that it's working. But I wasn't expecting to hurt BEFORE Ipi.
Hi y'all,
I've never had any pain before. Now, my neck is very tight, the node right under my jaw is hard as a rock, and I'm just a mess today. It hurts to (gently/slowly) turn my neck now.
I'm starting Ipi/Yervoy tomorrow. I have a call into my onc, but I'm really down right this minute. From other Ipi posts, I'm expecting some swelling and pain AFTER Ipi begins, to show that it's working. But I wasn't expecting to hurt BEFORE Ipi.
Feeling weepy, scared and afraid. Hard to be positive about starting Ipi when I feel I've suddenly taken a turn for the worse!
Also, I've emailed Dr. Sharfman at Johns Hopkins. Since I'm the first in Delaware to receive Ipi, I will be co-managed by Dr. Peri here, in coordination with Dr. Sharfman at Hopkins. I don't have Dr. Sharfman's cell phone number. He had told me that I would call HIM with any post treatment issues, since he's familiar with the side effects. I have not heard back from Dr. Sharfman for his cell number. I tried the office yesterday and they totally stonewalled me. Does anyone have his cell number? I'm not one to call and bug a doctor unless I REALLY need them!
Now I'm worried that I'm starting Ipi in bad shape, and I'll have some reaction on a holiday weekend and won't be able to reach anyone!
I'm sure I sound whiny, because I know many on this board are always in pain.
Trusting in Gods healing, but feeling alone right now…
TracyLee
Stage IV as of May 16 – scalp/neck/lungs
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- May 26, 2011 at 12:05 pm
Hi Tracy,
Sounds like a panic attack, or at least intense anxiety, to me. Your doc ought to be able to give you something to calm you. Maybe you already have something handy.
PS, you don't bug your dr when you have a concern like this…you pay your doc to help you.
Lord, in Your mercy, take care of Tracy and cope for her. Thank You. Amen and Amen.
Grace and peace,
Carol
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- May 26, 2011 at 12:05 pm
Hi Tracy,
Sounds like a panic attack, or at least intense anxiety, to me. Your doc ought to be able to give you something to calm you. Maybe you already have something handy.
PS, you don't bug your dr when you have a concern like this…you pay your doc to help you.
Lord, in Your mercy, take care of Tracy and cope for her. Thank You. Amen and Amen.
Grace and peace,
Carol
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- May 26, 2011 at 12:43 pm
Sorry to hear that your neck is painful. Perhaps all the stress that you have been going
through has caused the muscles in your neck and shoulder area to become tense? Are you
able to take some time out and do something relaxing for a little while?It is only natural to feel anxious when starting on a treatment such as ipi. However,
please remember that it is a very good drug that has shown great results.Hope that you are feeling better soon and remember that you are not alone.
You in my prayers.
Take care
Frank from Australia
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- May 26, 2011 at 12:43 pm
Sorry to hear that your neck is painful. Perhaps all the stress that you have been going
through has caused the muscles in your neck and shoulder area to become tense? Are you
able to take some time out and do something relaxing for a little while?It is only natural to feel anxious when starting on a treatment such as ipi. However,
please remember that it is a very good drug that has shown great results.Hope that you are feeling better soon and remember that you are not alone.
You in my prayers.
Take care
Frank from Australia
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- May 26, 2011 at 1:07 pm
I know that you have mets in your lungs and the original area of the scalp. Have you ever had anything in the neck previous to this? It could be several things, like you slept wrong and have a pulled muscle. Can you feel anything? If this is something it could be tiny, just pressing on a nerve . Until you are seen it would all be guessing.
Dr. Scharfman is very low key and I'm sure will sense your alarm and e-mail you back. Don't be surprised if you have to pop in somewhere (back to Baltimore or local onc) for a quick look. The nurses would not be allowed to hand out his cell number – I'm sure that is reserved for him giving out – but they can pass on your message. I would also suggest a call into the local oncologist.
My local onc gave me her cell number and told me I am to use it with discretion. Being alarmed about something would be a reason. I've never used it and I'm thinking since it's been a year if I ever called her on it she wouldn't remember she gave it to me! It's amazing how some Doctors are 24-7.
Let us know what you find out,
Linda
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- May 26, 2011 at 1:07 pm
I know that you have mets in your lungs and the original area of the scalp. Have you ever had anything in the neck previous to this? It could be several things, like you slept wrong and have a pulled muscle. Can you feel anything? If this is something it could be tiny, just pressing on a nerve . Until you are seen it would all be guessing.
Dr. Scharfman is very low key and I'm sure will sense your alarm and e-mail you back. Don't be surprised if you have to pop in somewhere (back to Baltimore or local onc) for a quick look. The nurses would not be allowed to hand out his cell number – I'm sure that is reserved for him giving out – but they can pass on your message. I would also suggest a call into the local oncologist.
My local onc gave me her cell number and told me I am to use it with discretion. Being alarmed about something would be a reason. I've never used it and I'm thinking since it's been a year if I ever called her on it she wouldn't remember she gave it to me! It's amazing how some Doctors are 24-7.
Let us know what you find out,
Linda
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- May 26, 2011 at 1:18 pm
My main problem area (lately) is my neck. I've had a full neck dissection last year, and a second excision on April 11 this year.
The scar is healing, but has an odd bump (node? internal adhesion from scarring?) at the base. That has been annoying and tender since April's surgery.
My local onc called and said OTC meds for pain. Which I've done. So hopefully I'll feel looser/better soon.
I hadn't given an iota of thought to being stressed/anxious about Ipi tomorrow, but of course wiser folks have pointed out that may be a lot of my problem!
This board is soooooooo helpful to me, thank you to all of you! Posse has my back.
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- May 26, 2011 at 1:18 pm
My main problem area (lately) is my neck. I've had a full neck dissection last year, and a second excision on April 11 this year.
The scar is healing, but has an odd bump (node? internal adhesion from scarring?) at the base. That has been annoying and tender since April's surgery.
My local onc called and said OTC meds for pain. Which I've done. So hopefully I'll feel looser/better soon.
I hadn't given an iota of thought to being stressed/anxious about Ipi tomorrow, but of course wiser folks have pointed out that may be a lot of my problem!
This board is soooooooo helpful to me, thank you to all of you! Posse has my back.
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- May 26, 2011 at 3:22 pm
Hello TracyLee,My melanoma was also on the back of my scalp. I had 4 prior surgeries and my melanoma returned only to be to close to the spine, making it inoperable and also mets to the liver and lung. I also had lesions that grew next to the tumor and were visible. My surgeon said they might even start seeping/weeping. This may be what you are starting to develop. They actually grew very large and were painful since my scalp was already tightened due to the skin graft and the new tumor that was inoperable being underneath this area.As far as the Ipi side effects, the best that I can remember from my oncologist is the diarrhea and it usually starts after the third treatment. My oncologist only mentioned this after the second treatment. My oncologist gave me his cell phone number at the first treatment with instructions to call him with any side effects. Luckily for me I had the usual rash, swelling and the Ipi itch. Nothing major that I couldn't handle and I have never had to call him on his cell phone.I agree with some of the others that you might just need to think about something pleasant for today and let tomorrow take care of itself. Also remember the posse is with you through this.Ipi is probably about the best solution for you, I hope that it works for you as it has for me.Best Wishes,Gene -
- May 26, 2011 at 3:22 pm
Hello TracyLee,My melanoma was also on the back of my scalp. I had 4 prior surgeries and my melanoma returned only to be to close to the spine, making it inoperable and also mets to the liver and lung. I also had lesions that grew next to the tumor and were visible. My surgeon said they might even start seeping/weeping. This may be what you are starting to develop. They actually grew very large and were painful since my scalp was already tightened due to the skin graft and the new tumor that was inoperable being underneath this area.As far as the Ipi side effects, the best that I can remember from my oncologist is the diarrhea and it usually starts after the third treatment. My oncologist only mentioned this after the second treatment. My oncologist gave me his cell phone number at the first treatment with instructions to call him with any side effects. Luckily for me I had the usual rash, swelling and the Ipi itch. Nothing major that I couldn't handle and I have never had to call him on his cell phone.I agree with some of the others that you might just need to think about something pleasant for today and let tomorrow take care of itself. Also remember the posse is with you through this.Ipi is probably about the best solution for you, I hope that it works for you as it has for me.Best Wishes,Gene
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- May 26, 2011 at 3:59 pm
Oh Tracy, I'm sure many of us wish we could scoop you up and help you get through this day. I have a wondered along with some others who have posted if this is indeed an understandable stress reaction. You mentioned that you hadn't given an "iota of thought" about being stressed. That set off alarms in my head. Some stress is buried deep and can be like your own little volcano bubbling inside. A lot of people carry their stress in their jaw. Just wondering 🙂 Tracy, you're a strong woman. You aren't alone. I have a feeling that many prayers will be coming your way today and tomorrow. You know there's power in that.
Take care, Cheryl
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- May 26, 2011 at 3:59 pm
Oh Tracy, I'm sure many of us wish we could scoop you up and help you get through this day. I have a wondered along with some others who have posted if this is indeed an understandable stress reaction. You mentioned that you hadn't given an "iota of thought" about being stressed. That set off alarms in my head. Some stress is buried deep and can be like your own little volcano bubbling inside. A lot of people carry their stress in their jaw. Just wondering 🙂 Tracy, you're a strong woman. You aren't alone. I have a feeling that many prayers will be coming your way today and tomorrow. You know there's power in that.
Take care, Cheryl
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- May 26, 2011 at 4:34 pm
Hi Tracy,
It does sound like you're in "stress mode". I had similar problems after my intitial lymph node biopsy and diagnosis. Things that never hurt or bothered me before were suddenly hurting and bothering me: my neck, my ear, my jaw, etc. Of course the more discomfort I felt the more stressed out I became.
Don't feel ashamed to ask for an antidepressant or a sleep-aid to get you through the initial hurdles. Once I got my prescriptions, my stress levels went down and with that the pains began to subside.
Tomorrow you and Mr. Ipi begin your fight. He will be at your side to kick this melanoma square in the ass. And, yes, the posse will be right here cheering you two on!
Linda
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- May 26, 2011 at 4:34 pm
Hi Tracy,
It does sound like you're in "stress mode". I had similar problems after my intitial lymph node biopsy and diagnosis. Things that never hurt or bothered me before were suddenly hurting and bothering me: my neck, my ear, my jaw, etc. Of course the more discomfort I felt the more stressed out I became.
Don't feel ashamed to ask for an antidepressant or a sleep-aid to get you through the initial hurdles. Once I got my prescriptions, my stress levels went down and with that the pains began to subside.
Tomorrow you and Mr. Ipi begin your fight. He will be at your side to kick this melanoma square in the ass. And, yes, the posse will be right here cheering you two on!
Linda
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- May 26, 2011 at 5:53 pm
As I understand it, you don't know that the pain in your neck is caused by a tumor. (My pain in the neck is named Roger !!)
It might be stress or just about anything and until you know it is a growing tumor, try to believe it isn't. If it is a tumor, the ipi is on the way and we are all praying that you are a complete responder.
As for meds, I am a great believer in using as few meds as possible.
BUT I love Ativan (anti anxiety) and Ambien (sleep aid). I use them as needed and they really help me. Don't be afraid to ask your doctor for something to help you through this difficult time. Both these meds are mild enough they will not hinder your ability to care for your family but may just provide some help.
Praying for you several times each day.
Your scalp sister, Nicki
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- May 26, 2011 at 5:53 pm
As I understand it, you don't know that the pain in your neck is caused by a tumor. (My pain in the neck is named Roger !!)
It might be stress or just about anything and until you know it is a growing tumor, try to believe it isn't. If it is a tumor, the ipi is on the way and we are all praying that you are a complete responder.
As for meds, I am a great believer in using as few meds as possible.
BUT I love Ativan (anti anxiety) and Ambien (sleep aid). I use them as needed and they really help me. Don't be afraid to ask your doctor for something to help you through this difficult time. Both these meds are mild enough they will not hinder your ability to care for your family but may just provide some help.
Praying for you several times each day.
Your scalp sister, Nicki
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- May 26, 2011 at 5:58 pm
Hi Tracy,
I am sending you all good wishes and cyber hugs from northern Delaware. I hope that as today goes on you are feeling better, with less pain. Tomorrow I will be thinking of you as you start Ipi – may Delaware's first candidate meet with first rate success!
Holding you in the light,
Lear
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- May 26, 2011 at 5:58 pm
Hi Tracy,
I am sending you all good wishes and cyber hugs from northern Delaware. I hope that as today goes on you are feeling better, with less pain. Tomorrow I will be thinking of you as you start Ipi – may Delaware's first candidate meet with first rate success!
Holding you in the light,
Lear
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- May 27, 2011 at 2:01 am
TracyLee, I'm going to tell you a quirky little story about what happened to me recently. A mere couple of days after fantastic scan results (which stated the disappearance mel in that area) I ended up with a swollen, painful lymph node where you're describing- Immediate thought "Oh- the drug stopped working for some reason?!!!" No. I had a small infection in a tooth & an annoying cold- though hoped the tooth was to blame. It hurt to swallow and turn my head, too. 3 doses of a amoxil later, and the pain is reducing rapidly, as is the swelling. From memory, I've also had swelling in that region from wisdom tooth issues and a multitude of annoying little thing- even a mouth ulcer.
I know sometimes it's hard to see past the "melanoma" assumption once you've been diagnosed, and the added anxiety about an upcoming trial doesn't help matters, I'm sure. Try not to jump to a worst-case scenario (or at least, don't stay in that mind set for long :D)
Thinking of you, and wishing for the best for you on Friday (and on the ipi trial in general- I expect some great results from you!)
Take care, and remember to breathe xxx
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- May 27, 2011 at 2:01 am
TracyLee, I'm going to tell you a quirky little story about what happened to me recently. A mere couple of days after fantastic scan results (which stated the disappearance mel in that area) I ended up with a swollen, painful lymph node where you're describing- Immediate thought "Oh- the drug stopped working for some reason?!!!" No. I had a small infection in a tooth & an annoying cold- though hoped the tooth was to blame. It hurt to swallow and turn my head, too. 3 doses of a amoxil later, and the pain is reducing rapidly, as is the swelling. From memory, I've also had swelling in that region from wisdom tooth issues and a multitude of annoying little thing- even a mouth ulcer.
I know sometimes it's hard to see past the "melanoma" assumption once you've been diagnosed, and the added anxiety about an upcoming trial doesn't help matters, I'm sure. Try not to jump to a worst-case scenario (or at least, don't stay in that mind set for long :D)
Thinking of you, and wishing for the best for you on Friday (and on the ipi trial in general- I expect some great results from you!)
Take care, and remember to breathe xxx
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