› Forums › General Melanoma Community › Horrid news, Hopkins on Friday
- This topic has 32 replies, 16 voices, and was last updated 12 years, 9 months ago by
MichaelFL.
- Post
-
- July 20, 2011 at 2:31 pm
Hi y'all,
I saw my surgical oncologist yesterday. He feels I'm NOT responding to ipi. My neck is very distended and he's quite worried that it has invaded my neck muscle and vascular vein.
I'm jumped to the top of the appointments list and see Dr. Sharfman and possibly Dr. Koch (head/neck surgeon) on Friday. CAT scan today.
I am so upset. Obviously I'll know more Friday, but doc feels I probably need IL2 (UGH) and radiation AND radical neck surgery.
Not in a good place right now, at all.
TracyLee
Hi y'all,
I saw my surgical oncologist yesterday. He feels I'm NOT responding to ipi. My neck is very distended and he's quite worried that it has invaded my neck muscle and vascular vein.
I'm jumped to the top of the appointments list and see Dr. Sharfman and possibly Dr. Koch (head/neck surgeon) on Friday. CAT scan today.
I am so upset. Obviously I'll know more Friday, but doc feels I probably need IL2 (UGH) and radiation AND radical neck surgery.
Not in a good place right now, at all.
TracyLee
- Replies
-
-
- July 20, 2011 at 2:57 pm
TracyLee, I am sorry to read this. Some people respond well to ordinary chemo such as
DTIC, so that could be worth considering. I can't remember if your tumour was tested for
any genetic mutations such as BRAF, so that's another option to look at.Wishing you good luck with the scan.
You are in my thoughts and prayers.
Frank from Australia
-
- July 20, 2011 at 2:57 pm
TracyLee, I am sorry to read this. Some people respond well to ordinary chemo such as
DTIC, so that could be worth considering. I can't remember if your tumour was tested for
any genetic mutations such as BRAF, so that's another option to look at.Wishing you good luck with the scan.
You are in my thoughts and prayers.
Frank from Australia
-
- July 20, 2011 at 3:21 pm
Take a deep breath and then gather your options. You live in a fairly central place even if it is little ole Delaware. If Hopkins doesn't have something to offer call NIH and also call some of the Phila. hospitals. Univ of Penn has several trials I believe. There are other options.
Remember that your local oncologist is not a mel specialist and doesn't know all of the options that are possible. Could this growth still be a reaction to ipi before a response?
We're here for you. Sending hugs
Linda
-
- July 20, 2011 at 3:21 pm
Take a deep breath and then gather your options. You live in a fairly central place even if it is little ole Delaware. If Hopkins doesn't have something to offer call NIH and also call some of the Phila. hospitals. Univ of Penn has several trials I believe. There are other options.
Remember that your local oncologist is not a mel specialist and doesn't know all of the options that are possible. Could this growth still be a reaction to ipi before a response?
We're here for you. Sending hugs
Linda
-
- July 20, 2011 at 3:41 pm
Move over and your posse will sit with you, as best as we can, in your not so good place. I'm sorry, Tracy that you got this news, but everybody so far is right. Get thee to good mel specialists and investigate your options!
Let us know how the scans go. Lots of prayers going up for you!
Lord, in Your mercy, open doors for Tracy to get the best care possible, the best doctors possible, and help her remember that even when we're not in a good place (at all) that You're in that place with us. You are in the midst of all she's going through and I thank You. Amen and Amen.
Grace and peace, much peace in this storm Fearless Leader,
Carol
-
- July 20, 2011 at 3:41 pm
Move over and your posse will sit with you, as best as we can, in your not so good place. I'm sorry, Tracy that you got this news, but everybody so far is right. Get thee to good mel specialists and investigate your options!
Let us know how the scans go. Lots of prayers going up for you!
Lord, in Your mercy, open doors for Tracy to get the best care possible, the best doctors possible, and help her remember that even when we're not in a good place (at all) that You're in that place with us. You are in the midst of all she's going through and I thank You. Amen and Amen.
Grace and peace, much peace in this storm Fearless Leader,
Carol
-
- July 20, 2011 at 6:07 pm
sending you plenty of good energy and vibes all the way from Spain Tracy! I know how it feels, but we need to keep positive thinking, right after that initial sadness. Be strong, and if possible, go walking to a nice place, eat ice cream and watch a nice positive movie! Whatever happens, there's always an opportunity behind it.
-
- July 20, 2011 at 6:07 pm
sending you plenty of good energy and vibes all the way from Spain Tracy! I know how it feels, but we need to keep positive thinking, right after that initial sadness. Be strong, and if possible, go walking to a nice place, eat ice cream and watch a nice positive movie! Whatever happens, there's always an opportunity behind it.
-
- July 20, 2011 at 7:30 pm
TracyLee, I am so sorry you got news that you did not want to hear. It just plain sucks. As others have said, there are other options out there. I would definitely look into the B-RAF testing and also see if you can get into NIH. And please remember that there are others on this board who responded to IL-2 after failiing IPI. Keep that in mind and know that whatever treatment you decide, it may be the one that gives you what you want – an NED status!!
Stay positive and we're thinking of you,
Dave & Maria
-
- July 20, 2011 at 10:04 pm
TracyLee,
I'm sorry that ipi has't seemed to work for you, but please continue to remain positive in all this mess. You need to be scanned to know what's going on, so hopefully your Dr is wrong with his assumption. Lots of people have been told many scary things which turned out to be nothing, so there is always hope.
IL-2 is nasty, but many people respond to it. Maybe this is the drug that WILL work for you. Thank God there are other options available – DTIC, IL-2, TIL, etc – your magic bullet still awaits you TracyLee – believe it 🙂
Lisa – Stage 4 lung mets
scans on Friday after 2 rounds of dacarbazine
I'm full of hope – nothing will convince me otherwise!
-
- July 20, 2011 at 10:34 pm
Hang in there — I am sure that something will come along to help you. Our prayers are with you. If you need support contact us here in Delaware – http://www.miles4melanomade.org
-
- July 20, 2011 at 10:34 pm
Hang in there — I am sure that something will come along to help you. Our prayers are with you. If you need support contact us here in Delaware – http://www.miles4melanomade.org
-
- July 20, 2011 at 10:04 pm
TracyLee,
I'm sorry that ipi has't seemed to work for you, but please continue to remain positive in all this mess. You need to be scanned to know what's going on, so hopefully your Dr is wrong with his assumption. Lots of people have been told many scary things which turned out to be nothing, so there is always hope.
IL-2 is nasty, but many people respond to it. Maybe this is the drug that WILL work for you. Thank God there are other options available – DTIC, IL-2, TIL, etc – your magic bullet still awaits you TracyLee – believe it 🙂
Lisa – Stage 4 lung mets
scans on Friday after 2 rounds of dacarbazine
I'm full of hope – nothing will convince me otherwise!
-
- July 20, 2011 at 7:30 pm
TracyLee, I am so sorry you got news that you did not want to hear. It just plain sucks. As others have said, there are other options out there. I would definitely look into the B-RAF testing and also see if you can get into NIH. And please remember that there are others on this board who responded to IL-2 after failiing IPI. Keep that in mind and know that whatever treatment you decide, it may be the one that gives you what you want – an NED status!!
Stay positive and we're thinking of you,
Dave & Maria
-
- July 20, 2011 at 11:15 pm
I am sorry to read that you're going through a rough time. You are in good hands with Dr. Scharfmann. He is one of the top melanoma speciallists in the country. There even are clinical trials going on at Hopkins for which you may qualify so don't lose heart just yet:
http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/clinical_trials/
The docs will all know more after the results of the CAT scan.
Sending lots of prayers and hugs your way.
Linda
-
- July 20, 2011 at 11:15 pm
I am sorry to read that you're going through a rough time. You are in good hands with Dr. Scharfmann. He is one of the top melanoma speciallists in the country. There even are clinical trials going on at Hopkins for which you may qualify so don't lose heart just yet:
http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/clinical_trials/
The docs will all know more after the results of the CAT scan.
Sending lots of prayers and hugs your way.
Linda
-
- July 21, 2011 at 1:56 am
TracyLee..I'm so sorry to hear this news. Remember IL-2 does have good response in comparison to other drugs. It's nasty but you can do this! You're tough I can feel it. IL-2 will be part of the TIL trial if I get officially accepted. If you want any info concerning TIL program at NIH, don't hesitate to e-mail me (see profile). I can't say enough about NIH, it's a blessing for me. Val (stage IV)
-
- July 21, 2011 at 11:20 am
Dear TraceyLee,
I am so sorry to hear this news, but am hoping that maybe its the Ipi really revving up your immune system and fighting the melanoma?? If not the good thing is you are already on to the next step, and that is to discover what else to try……
This is so difficult, you hope and pray and hold your breath while waiting to see if the treatments will work and you can resume your life, then your life becomes all melanoma survival…take one day at a time and make it your best, as best you can do. Cry alot, and reaach out to loved ones, friends and family, then kick melanoma's butt! I am hoping that your kids are getting some support as well, as I know every time I had re-occurences, even though they were teens, their squabbling amongst themselves would increase….they were so stressed too, but didnt know how or want to burden me with their feelings too.
Thinking of you,
Vermont_Donna, stage 3a, NED
-
- July 21, 2011 at 11:20 am
Dear TraceyLee,
I am so sorry to hear this news, but am hoping that maybe its the Ipi really revving up your immune system and fighting the melanoma?? If not the good thing is you are already on to the next step, and that is to discover what else to try……
This is so difficult, you hope and pray and hold your breath while waiting to see if the treatments will work and you can resume your life, then your life becomes all melanoma survival…take one day at a time and make it your best, as best you can do. Cry alot, and reaach out to loved ones, friends and family, then kick melanoma's butt! I am hoping that your kids are getting some support as well, as I know every time I had re-occurences, even though they were teens, their squabbling amongst themselves would increase….they were so stressed too, but didnt know how or want to burden me with their feelings too.
Thinking of you,
Vermont_Donna, stage 3a, NED
-
- July 21, 2011 at 1:56 am
TracyLee..I'm so sorry to hear this news. Remember IL-2 does have good response in comparison to other drugs. It's nasty but you can do this! You're tough I can feel it. IL-2 will be part of the TIL trial if I get officially accepted. If you want any info concerning TIL program at NIH, don't hesitate to e-mail me (see profile). I can't say enough about NIH, it's a blessing for me. Val (stage IV)
-
- July 21, 2011 at 1:23 pm
Thank you to my posse for supporting me when I'm down!
I finally got a decent night's sleep, which certainly helps my mood and outlook. My husband is able to go with me tomorrow to Hopkins, the CAT scan was a breeze compared to some other scans, so I already feel better.
We will see what Dr. Sharfman has to say, I've got lots of questions for him.
Wise and kind folks on this board, absolutely could NOT do this without y'all!
Kids are semi decent (they ARE teenagers), we are all in counselling. God bless good insurance, and I am so sorry for the many who don't have the luxury of good coverage on this board. I don't mean to rub it in anyone's face, I am just so grateful that for now, bills are not an issue for us.
Tomorrow will bring lots of discussion and a new game plan!
TracyLee
-
- July 21, 2011 at 1:23 pm
Thank you to my posse for supporting me when I'm down!
I finally got a decent night's sleep, which certainly helps my mood and outlook. My husband is able to go with me tomorrow to Hopkins, the CAT scan was a breeze compared to some other scans, so I already feel better.
We will see what Dr. Sharfman has to say, I've got lots of questions for him.
Wise and kind folks on this board, absolutely could NOT do this without y'all!
Kids are semi decent (they ARE teenagers), we are all in counselling. God bless good insurance, and I am so sorry for the many who don't have the luxury of good coverage on this board. I don't mean to rub it in anyone's face, I am just so grateful that for now, bills are not an issue for us.
Tomorrow will bring lots of discussion and a new game plan!
TracyLee
- You must be logged in to reply to this topic.