› Forums › General Melanoma Community › Happy news from Hopkins
- This topic has 45 replies, 15 voices, and was last updated 12 years, 4 months ago by
alexbordings.
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- July 22, 2011 at 11:48 pm
Hi Y'all,
Saw Dr. Sharfman today. He does not feel I'm responding to Ipi, but will finish the 4th dose this Thursday.
I AM Braf +, since I have fluid in the lungs, that's the next step for me.
It is so nice to not feel like death is NOT imminent and that their is hope. Dr. Sharfman is just the best, very straightforward but never gloom and doom. Always kind and hopeful.
Hi Y'all,
Saw Dr. Sharfman today. He does not feel I'm responding to Ipi, but will finish the 4th dose this Thursday.
I AM Braf +, since I have fluid in the lungs, that's the next step for me.
It is so nice to not feel like death is NOT imminent and that their is hope. Dr. Sharfman is just the best, very straightforward but never gloom and doom. Always kind and hopeful.
Even had some necessary discussions with my husband during the drive, but not at all sad or creepy. Made me relax knowing that he is at least thinking about things that keep me awake. We had a nice day together, got some good news, and have a plan to move forward.
Praying that all on the board have a "good news" weekend, we will beat the beast.
Special thanks to the posse for holding me up when I was so down earlier this week!
Hugs from Delaware!
TracyLee
- Replies
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- July 23, 2011 at 12:05 am
May the next treatment be the one that gets a durable response! Best wishes to you.
Lori
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- July 26, 2011 at 2:04 am
To Everyone,
Thank You, Thank You!!! It was really begining to feel like I was the only one in this boat. I tried to no avail to get my results ( even just to see if the results where in!! ), over 4 hours in all on the phone, spoke to several people, but no one seems to know who or where the results are. Don't misunderstand they are not THAT disorganized it's just a very large Hosptial that I go to and there are actually three hospital that are affilitated with each other. I finally just gave in and emailed my Doc directly, hopefully he will contact me back soon. I think the not knowing part is the worst of all of this.
So here is the good news for the day, I have five children in all, they are 27,23,21,13, and 9, the 13 year old got his HIGH SCHOOL FOOTBALL HELMENT TODAY!!!!, yeah, I know a little cheezy but Momma is so proud he made the team!!!!
Now her is the question for the day, ( so glad to have Y"all her to ask ), is it normal for my donor site ( upper thigh ) to still hurt like a 3rd degree burn 10 days after surgery??, yes it is healing good just hurts like a %^&*(!!
My scalp removal site has very little if any pain, its basically the size of a softball, as a matter of fact when i came home from the hospital it LOOKED like I have a softball cut in half and stuck on the top of my head!! I am very thankfull that my face and forehead were in no way effected so far, and the hair loss thing does bother me but if the alternate is cancer BALD IS BEAUTIFUL.
I wish I was as informed about my personal information as most of you are, I will ask for copies of everything they have done and everything they do in the future, seems most important now, didn't when I was in the daze of "it's what on my head"!!
Thank All of you once again
cheryl
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- July 26, 2011 at 2:04 am
To Everyone,
Thank You, Thank You!!! It was really begining to feel like I was the only one in this boat. I tried to no avail to get my results ( even just to see if the results where in!! ), over 4 hours in all on the phone, spoke to several people, but no one seems to know who or where the results are. Don't misunderstand they are not THAT disorganized it's just a very large Hosptial that I go to and there are actually three hospital that are affilitated with each other. I finally just gave in and emailed my Doc directly, hopefully he will contact me back soon. I think the not knowing part is the worst of all of this.
So here is the good news for the day, I have five children in all, they are 27,23,21,13, and 9, the 13 year old got his HIGH SCHOOL FOOTBALL HELMENT TODAY!!!!, yeah, I know a little cheezy but Momma is so proud he made the team!!!!
Now her is the question for the day, ( so glad to have Y"all her to ask ), is it normal for my donor site ( upper thigh ) to still hurt like a 3rd degree burn 10 days after surgery??, yes it is healing good just hurts like a %^&*(!!
My scalp removal site has very little if any pain, its basically the size of a softball, as a matter of fact when i came home from the hospital it LOOKED like I have a softball cut in half and stuck on the top of my head!! I am very thankfull that my face and forehead were in no way effected so far, and the hair loss thing does bother me but if the alternate is cancer BALD IS BEAUTIFUL.
I wish I was as informed about my personal information as most of you are, I will ask for copies of everything they have done and everything they do in the future, seems most important now, didn't when I was in the daze of "it's what on my head"!!
Thank All of you once again
cheryl
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- July 23, 2011 at 12:42 am
Tracy, it's so good to hear this news. And so hard to keep up our hopes when things look so bad.
Having a doctor you trust makes a big difference. And I think Braf+ is good isn't it? (hard to understand all the medical jargon and treatments until you need them yourself)
No matter what happens, like you living another 30 years, it's good to have those conversations with our spouse. Better prepared than not.
Keep praying, and read the roll call for the Stage 4 undead.
Nicki, Stage 3b
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- July 23, 2011 at 12:42 am
Tracy, it's so good to hear this news. And so hard to keep up our hopes when things look so bad.
Having a doctor you trust makes a big difference. And I think Braf+ is good isn't it? (hard to understand all the medical jargon and treatments until you need them yourself)
No matter what happens, like you living another 30 years, it's good to have those conversations with our spouse. Better prepared than not.
Keep praying, and read the roll call for the Stage 4 undead.
Nicki, Stage 3b
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- July 23, 2011 at 1:30 am
Good that you have your next plan in place.
Do your doctors think that you can improve while on the BRAF drug and possibly then try IL-2? I say this with all due consideration and compassion, (and I am sure you are aware) that the BRAF drug response is on average about seven months, so keep this in mind while you are considering future options.
IL-2 is most likely to give you are durable response.
Best wishes and good luck.
Michael
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- July 23, 2011 at 1:30 am
Good that you have your next plan in place.
Do your doctors think that you can improve while on the BRAF drug and possibly then try IL-2? I say this with all due consideration and compassion, (and I am sure you are aware) that the BRAF drug response is on average about seven months, so keep this in mind while you are considering future options.
IL-2 is most likely to give you are durable response.
Best wishes and good luck.
Michael
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- July 23, 2011 at 2:13 am
Great to hear you had some good news, O Fearless Leader! Which trial are they putting you on? Compassionate use BRAF?
Michelle, wife of Don
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- July 23, 2011 at 2:13 am
Great to hear you had some good news, O Fearless Leader! Which trial are they putting you on? Compassionate use BRAF?
Michelle, wife of Don
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- July 23, 2011 at 2:26 am
Hi Tracy,
I'm glad and relieved you've had a good day today, got some good news, have a plan, and have such a supportive hubby who can have those conversations! They are good aren't they (the conversations, though I'm sure the hubby is too.)
Prayers that your good news will continue and your plan works! I like it when you sparkle!
Lord, thank You for good news, plans, conversations, an understanding hubby, and friends. Thank You for Your mercy shown to Tracy. Please keep all blessings flowing her way and on everyone else that battles. Amen and Amen.
Grace, peace, and a great weekend,
Carol
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- July 23, 2011 at 2:26 am
Hi Tracy,
I'm glad and relieved you've had a good day today, got some good news, have a plan, and have such a supportive hubby who can have those conversations! They are good aren't they (the conversations, though I'm sure the hubby is too.)
Prayers that your good news will continue and your plan works! I like it when you sparkle!
Lord, thank You for good news, plans, conversations, an understanding hubby, and friends. Thank You for Your mercy shown to Tracy. Please keep all blessings flowing her way and on everyone else that battles. Amen and Amen.
Grace, peace, and a great weekend,
Carol
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- July 23, 2011 at 3:01 am
TracyLee, that sounds better! It is a relief that you are BRAF positive, as this gives you
another option that could work. However, I am concerned about the duration of response
that many people currently have with this therapy.I can't remember if I have mentioned this before – do you know if you would be eligible
for TIL treatment at the NIH? I really think that you should consider this after you have
tried BRAF inhibitor(s). They will need a sample from an existing tumour, so it would be
wise to contact them as soon as possible regarding their requirements.Take care
Frank from Australia
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- July 23, 2011 at 11:48 am
TracyLee, that is great news that you are B-RAF positive! I agree with Frank, if you have a positive response to the drug, I would strongly consider IL-2 or the TIL treatment after it has run its course. A friend of ours is doing just that, and so far the B-RAF drug is doing is what it is supposed to do and once his brain mets are treated he plans to do IL-2 in the fall. I know the TIL study with Rosenburg recruits patient that have been heavily pretreated as well. This is the one we are hoping to get Dave into (although it will be a first line of attack for him).
I hope you respond well to the therapy. You got this girl, keep plugging on.
Best wishes,
Maria & Dave
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- July 23, 2011 at 11:48 am
TracyLee, that is great news that you are B-RAF positive! I agree with Frank, if you have a positive response to the drug, I would strongly consider IL-2 or the TIL treatment after it has run its course. A friend of ours is doing just that, and so far the B-RAF drug is doing is what it is supposed to do and once his brain mets are treated he plans to do IL-2 in the fall. I know the TIL study with Rosenburg recruits patient that have been heavily pretreated as well. This is the one we are hoping to get Dave into (although it will be a first line of attack for him).
I hope you respond well to the therapy. You got this girl, keep plugging on.
Best wishes,
Maria & Dave
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- July 23, 2011 at 3:01 am
TracyLee, that sounds better! It is a relief that you are BRAF positive, as this gives you
another option that could work. However, I am concerned about the duration of response
that many people currently have with this therapy.I can't remember if I have mentioned this before – do you know if you would be eligible
for TIL treatment at the NIH? I really think that you should consider this after you have
tried BRAF inhibitor(s). They will need a sample from an existing tumour, so it would be
wise to contact them as soon as possible regarding their requirements.Take care
Frank from Australia
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- July 23, 2011 at 12:51 pm
Tracy Lee,
I'm so happy to hear that you've found a "happy place" for treatment. It's so important to be comfortable with the doctors and staff who will be treating you. May this one be your magic bullet! Keep up the happy thoughts and best of luck!
Tricia
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- July 23, 2011 at 12:51 pm
Tracy Lee,
I'm so happy to hear that you've found a "happy place" for treatment. It's so important to be comfortable with the doctors and staff who will be treating you. May this one be your magic bullet! Keep up the happy thoughts and best of luck!
Tricia
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- July 23, 2011 at 12:57 pm
Dear TracyLee,
Glad things and you and hubby are in a better place and have some hopeful news to move forward with. You have had some good suggestions from other MPIP'ers.
Those hard conversations about the things that keep you awake at night when it seems all are sleeping are good to have.
Thinking of you,
Vermont_Donna, stage 3a, NED
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- July 23, 2011 at 12:57 pm
Dear TracyLee,
Glad things and you and hubby are in a better place and have some hopeful news to move forward with. You have had some good suggestions from other MPIP'ers.
Those hard conversations about the things that keep you awake at night when it seems all are sleeping are good to have.
Thinking of you,
Vermont_Donna, stage 3a, NED
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- July 23, 2011 at 6:56 pm
I was thinking about you all day yesterday and was praying that you'd hear some good news.
I really like Dr. Scharfmann's calm demeanor too. Had I seen him before I saw that awful dermatologist at Hopkins I would have had a much better Christmas and New Year's. But that's all in the past now.
Your note really made me smile. Three cheers for being BRAF +!!!!!!!
Joanne, Dr. Scharfman's clinical trial nurse is also very nice. You'll like her a lot too. You'll probably be heading to the downtown campus for your BRAF treatments. Drop me a line if you ever need information on making your way through their maze.
Many hugs to you, Tracy! I am SO happy that the news was not doom and gloom.
Linda
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- July 23, 2011 at 6:56 pm
I was thinking about you all day yesterday and was praying that you'd hear some good news.
I really like Dr. Scharfmann's calm demeanor too. Had I seen him before I saw that awful dermatologist at Hopkins I would have had a much better Christmas and New Year's. But that's all in the past now.
Your note really made me smile. Three cheers for being BRAF +!!!!!!!
Joanne, Dr. Scharfman's clinical trial nurse is also very nice. You'll like her a lot too. You'll probably be heading to the downtown campus for your BRAF treatments. Drop me a line if you ever need information on making your way through their maze.
Many hugs to you, Tracy! I am SO happy that the news was not doom and gloom.
Linda
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- July 24, 2011 at 5:18 pm
Hi TracyLee,
I was away so didn't get a chance to reply to your original post.
I'm so glad you're feeling more encouraged now, and I look forward to following your progress.
You and I both finish Ipi on Thursay.
I tried to look for past posts–did you/are you having side effects from the Ipi?
xo,
karen
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- July 24, 2011 at 5:18 pm
Hi TracyLee,
I was away so didn't get a chance to reply to your original post.
I'm so glad you're feeling more encouraged now, and I look forward to following your progress.
You and I both finish Ipi on Thursay.
I tried to look for past posts–did you/are you having side effects from the Ipi?
xo,
karen
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- July 24, 2011 at 5:19 pm
Hi TracyLee,
I was away so didn't get a chance to reply to your original post.
I'm so glad you're feeling more encouraged now, and I look forward to following your progress.
You and I both finish Ipi on Thursay.
I tried to look for past posts–did you/are you having side effects from the Ipi?
xo,
karen
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- July 25, 2011 at 8:32 pm
Karen,
I was fine on ipi 1 & 2. Third one kicked my behind! Nausea and dizziness. Took 3 days to get all settled down, but after that I was fine.
Knowing I had THAT response, I've blocked Friday (day after 4th ipi) off here at work. It's easier to show up if I feel ok, than call out and feel like a shmuck for not planning ahead.
Wishing you a great response with no side effects!
Hugs from Delaware,
TracyLee
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- July 25, 2011 at 8:32 pm
Karen,
I was fine on ipi 1 & 2. Third one kicked my behind! Nausea and dizziness. Took 3 days to get all settled down, but after that I was fine.
Knowing I had THAT response, I've blocked Friday (day after 4th ipi) off here at work. It's easier to show up if I feel ok, than call out and feel like a shmuck for not planning ahead.
Wishing you a great response with no side effects!
Hugs from Delaware,
TracyLee
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- July 24, 2011 at 5:19 pm
Hi TracyLee,
I was away so didn't get a chance to reply to your original post.
I'm so glad you're feeling more encouraged now, and I look forward to following your progress.
You and I both finish Ipi on Thursay.
I tried to look for past posts–did you/are you having side effects from the Ipi?
xo,
karen
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- July 25, 2011 at 3:53 am
Tracy,
I am new to this site, I have been reading the posts and wanted to respond to yours because you have some history with melanoma of the scalp. I started with a typical "bump" on my head that I ignored ( not a smart move ), after a few months went to my local University of Washington clinic thinking it would be a simple procedure to remove it, maybe a few stitches at worst. WOW!!, I have never been so wrong in my whole life. The good news is UW medical moves FAST, real fast. Time from iniital appointment at clinic to nuclear mapping, WLE, and Sent lymph biopsy was less than a month. I was not ulcerated according to the original punch biopsy but it was already a thickness of 5mm. I had surgery 9 days ago, still no biopsy results. is that normal? I am stressed, worried, and quite frankly going out of my mind with all the information I am getting off line, so I wanted to write to you because it looks like you have been there and and the t-shirt to prove it. I would greatly appreciate any info from you, and once again I wish you all the best.
cheryl
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- July 25, 2011 at 10:32 am
Cheryl, I would just like to chime in here and welcome you to our forum. Biopsy results
can take some time, as it depends on circumstances and the people you are dealing with.
Perhaps you could ring them to check when the results will be available?There are some great people here who continue to defy the melanoma statistics that you may
have read about. So, please don't hesitate to create a new topic with any new concerns
that you may have.Best wishes
Frank from Australia
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- July 25, 2011 at 10:32 am
Cheryl, I would just like to chime in here and welcome you to our forum. Biopsy results
can take some time, as it depends on circumstances and the people you are dealing with.
Perhaps you could ring them to check when the results will be available?There are some great people here who continue to defy the melanoma statistics that you may
have read about. So, please don't hesitate to create a new topic with any new concerns
that you may have.Best wishes
Frank from Australia
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- July 25, 2011 at 7:45 pm
Hi Cheryl and welcome to our site. I too have scalp melanoma, not too common, especialy in women. They like to think our hair protects us but guess not.
I was diagnosed 12/29/09. Had Sentinal node biopsy (small tumor found) and WLE with skin graft in February of 2010. March of 2010 was lots of fun with a complete neck dissection where 23 nodes were taken and one came back "dirty". Followed by physical therapy to fix the nerve damage to the nearby shoulder.
I tried Interferon in April 2010 but didn't complete it and was in remission unitil October of 2010. A tiny spot showed up on the skin graft which turned out to be melanoma returning. Even with clear margins, stray cells (sometimes called seeds) can cause more trouble.
Another sad side effect to scalp melanona is baldness. Some treatments (surgery, chemo, radiation) causes hair loss and loss of hair to the scalp is of course harder to deal with than loss of leg hair. I wish I had loss of leg hair!
Had to have more treatment from January through May of this year due to this recurrence. Won't bother you with all the treatment details but I am now considered No Evidence of Disease (NED). NED is our friend and we love him!
Guess I say all this to let you know that I am still alive and kicking 1.5 years after diagnosis. I have only 23.5 years to go until my 25th melanoma anniversary!
One thing you will learn from the warriors here is that you have to be yor own advocate. Like with these biopsy results, it may be they are siting in the doctor's office waiting for your next appointment. This happened to me. So don't be afraid to make phone calls and be firm in what you want. It is your life and you are in charge of your medical care.
Nicki, Stage 3b
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- July 25, 2011 at 7:45 pm
Hi Cheryl and welcome to our site. I too have scalp melanoma, not too common, especialy in women. They like to think our hair protects us but guess not.
I was diagnosed 12/29/09. Had Sentinal node biopsy (small tumor found) and WLE with skin graft in February of 2010. March of 2010 was lots of fun with a complete neck dissection where 23 nodes were taken and one came back "dirty". Followed by physical therapy to fix the nerve damage to the nearby shoulder.
I tried Interferon in April 2010 but didn't complete it and was in remission unitil October of 2010. A tiny spot showed up on the skin graft which turned out to be melanoma returning. Even with clear margins, stray cells (sometimes called seeds) can cause more trouble.
Another sad side effect to scalp melanona is baldness. Some treatments (surgery, chemo, radiation) causes hair loss and loss of hair to the scalp is of course harder to deal with than loss of leg hair. I wish I had loss of leg hair!
Had to have more treatment from January through May of this year due to this recurrence. Won't bother you with all the treatment details but I am now considered No Evidence of Disease (NED). NED is our friend and we love him!
Guess I say all this to let you know that I am still alive and kicking 1.5 years after diagnosis. I have only 23.5 years to go until my 25th melanoma anniversary!
One thing you will learn from the warriors here is that you have to be yor own advocate. Like with these biopsy results, it may be they are siting in the doctor's office waiting for your next appointment. This happened to me. So don't be afraid to make phone calls and be firm in what you want. It is your life and you are in charge of your medical care.
Nicki, Stage 3b
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- July 25, 2011 at 8:36 pm
Cheryl,
I know there was a post from Nicki, my fellow scalp pal.
I had a skin graft (bald spot about the size of an oj can lid), then a neck biopsy (just like Nicki, NO FUN). Then I also had reocurrences in the original sking graft.
I've had a lot of procedures, but I'm still here and working full time. (It helps to have an awesome boss and co-workers). My diagnosis was April 2010, so I'm about 15 months into it.
It can be very scary. I suggest taking someone with you when possible to your appointments. They will hear and remember stuff you just won't retain. It needs to be someone calm and supportive, not someone tripping over your diagnosis!
Take a deep breath. You have the right to politely call and ask about your biopsy (or any other) results. It's your life. It will be ok, it just doesn't feel like it right now!
Hugs from Delaware,
TracyLee
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- July 25, 2011 at 11:06 pm
Wow, look at the three of us w/Mel starting on our scalps. Mine did too, but my graft ended up on my temple, I guess from them pulling the skin down after all the cutting. A lot of good it did; it was back 3 months later! And yes, a spot started on my graft too.
karen
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- July 25, 2011 at 11:06 pm
Wow, look at the three of us w/Mel starting on our scalps. Mine did too, but my graft ended up on my temple, I guess from them pulling the skin down after all the cutting. A lot of good it did; it was back 3 months later! And yes, a spot started on my graft too.
karen
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- July 25, 2011 at 8:36 pm
Cheryl,
I know there was a post from Nicki, my fellow scalp pal.
I had a skin graft (bald spot about the size of an oj can lid), then a neck biopsy (just like Nicki, NO FUN). Then I also had reocurrences in the original sking graft.
I've had a lot of procedures, but I'm still here and working full time. (It helps to have an awesome boss and co-workers). My diagnosis was April 2010, so I'm about 15 months into it.
It can be very scary. I suggest taking someone with you when possible to your appointments. They will hear and remember stuff you just won't retain. It needs to be someone calm and supportive, not someone tripping over your diagnosis!
Take a deep breath. You have the right to politely call and ask about your biopsy (or any other) results. It's your life. It will be ok, it just doesn't feel like it right now!
Hugs from Delaware,
TracyLee
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- July 25, 2011 at 3:53 am
Tracy,
I am new to this site, I have been reading the posts and wanted to respond to yours because you have some history with melanoma of the scalp. I started with a typical "bump" on my head that I ignored ( not a smart move ), after a few months went to my local University of Washington clinic thinking it would be a simple procedure to remove it, maybe a few stitches at worst. WOW!!, I have never been so wrong in my whole life. The good news is UW medical moves FAST, real fast. Time from iniital appointment at clinic to nuclear mapping, WLE, and Sent lymph biopsy was less than a month. I was not ulcerated according to the original punch biopsy but it was already a thickness of 5mm. I had surgery 9 days ago, still no biopsy results. is that normal? I am stressed, worried, and quite frankly going out of my mind with all the information I am getting off line, so I wanted to write to you because it looks like you have been there and and the t-shirt to prove it. I would greatly appreciate any info from you, and once again I wish you all the best.
cheryl
-
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