› Forums › General Melanoma Community › PET Scan Results – Not Good News…
- This topic has 34 replies, 17 voices, and was last updated 13 years, 11 months ago by
boot2aboot.
- Post
-
- June 8, 2011 at 1:38 am
Sorry I've been out. Remember I had the distended stomach….its Mel. All over. "too numerous to count". Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline. Did that over the weekend. Its been a real strange trip. Honestly at more peace than I thought I would be. I'm preparing for the worse, my doc is trying everything he can to extend. He said he's seen worse?! I don't see how.
Sorry I've been out. Remember I had the distended stomach….its Mel. All over. "too numerous to count". Doctor Gonzoles at UCCC said he needed to get the tumor growth under control before Yervoy so he had me do a round of DTIC and Vinplastine and Cistabline. Did that over the weekend. Its been a real strange trip. Honestly at more peace than I thought I would be. I'm preparing for the worse, my doc is trying everything he can to extend. He said he's seen worse?! I don't see how.
Sorry for such a post…but, I wanted to let you know. I'll try to update occassionally…hopefully the chemo beats it back a bit and I can get some comfort. But, it manifested quickly…very quickly…my body just couldn't handle the tumor load its probably had for months..and it just reached a threshold. Strange. Strange indeed. – Love you all – Shari
- Replies
-
-
- June 8, 2011 at 1:44 am
Shari,
Please don't ever apologize for posting. We share all the news, good and bad, in this MPIP family. I am so sorry to read this news though. I just read your profile and see that you have a young son. I hope you have the support of family and friends surrounding you.
One day at a time. Hold onto hope. We're here for you. Good thoughts and prayers going your way.
Stay Strong
KingStage IV 7/05 Liver mets
-
- June 8, 2011 at 1:44 am
Shari,
Please don't ever apologize for posting. We share all the news, good and bad, in this MPIP family. I am so sorry to read this news though. I just read your profile and see that you have a young son. I hope you have the support of family and friends surrounding you.
One day at a time. Hold onto hope. We're here for you. Good thoughts and prayers going your way.
Stay Strong
KingStage IV 7/05 Liver mets
-
- June 8, 2011 at 1:54 am
Oh Shari,
I'm sorry to hear your news. It does sound like your Doctor has been quick to respond and you didn't have any additional wait time.
Sending prayers and cyber hugs to you and your son.
Please keep us up to date when you feel well enough. Sounds like you have a wonderful attitude and I hope they can get you comfortable quickly!
Linda
-
- June 8, 2011 at 1:54 am
Oh Shari,
I'm sorry to hear your news. It does sound like your Doctor has been quick to respond and you didn't have any additional wait time.
Sending prayers and cyber hugs to you and your son.
Please keep us up to date when you feel well enough. Sounds like you have a wonderful attitude and I hope they can get you comfortable quickly!
Linda
-
- June 8, 2011 at 2:46 am
Shari,
I'm sorry to hear this. Prayers that comfort will come and that the chemo does its job in preparation for Yervoy. You do what you need to do and we'll be here for you.
Lord, in Your mercy. Amen.
Grace and peace,
Carol
-
- June 8, 2011 at 2:46 am
Shari,
I'm sorry to hear this. Prayers that comfort will come and that the chemo does its job in preparation for Yervoy. You do what you need to do and we'll be here for you.
Lord, in Your mercy. Amen.
Grace and peace,
Carol
-
- June 8, 2011 at 2:49 am
Shari,
I'm so sorry to hear this news. I hope you have a response to the chemo and can get onto Yervoy and do great on it.
You'll be in my thoughts. Let us know when you can.
dian
-
- June 8, 2011 at 2:49 am
Shari,
I'm so sorry to hear this news. I hope you have a response to the chemo and can get onto Yervoy and do great on it.
You'll be in my thoughts. Let us know when you can.
dian
-
- June 8, 2011 at 5:30 am
I am sorry to read that the melanoma has spread. Please don't hesitate to post. There are
many people here who really care and understand how you might be feeling.I have just read your profile and noticed that Dr McWilliams recommended local radiation
and Leukine (GM-CSF) in 2010. Did you have any Leukine at all? If not, perhaps you would
be eligible for it once the chemo has had a chance to work?Hope that things will look brighter soon.
Frank from Australia
-
- June 8, 2011 at 5:30 am
I am sorry to read that the melanoma has spread. Please don't hesitate to post. There are
many people here who really care and understand how you might be feeling.I have just read your profile and noticed that Dr McWilliams recommended local radiation
and Leukine (GM-CSF) in 2010. Did you have any Leukine at all? If not, perhaps you would
be eligible for it once the chemo has had a chance to work?Hope that things will look brighter soon.
Frank from Australia
-
- June 8, 2011 at 5:37 am
Shari,
We are all here to support each other and this is the very place you should come to share this news. I'm sorry to hear about the progression but will send up prayers that the chemo does it's work so you can try the Yervoy.
Hoping that you can stay comfortable during this difficult challenge . .
Mary
-
- June 8, 2011 at 5:37 am
Shari,
We are all here to support each other and this is the very place you should come to share this news. I'm sorry to hear about the progression but will send up prayers that the chemo does it's work so you can try the Yervoy.
Hoping that you can stay comfortable during this difficult challenge . .
Mary
-
- June 8, 2011 at 7:01 am
Did your Dr. mention the new limuab type drug? I saw it on CNN – apparantly it works faster than yervoy (ipi) and within 72 hours. I think it was one of the drugs in the BRIM3 trial but don't quote me on it.
I just saw the news yesterday so google the news networks on the drug, I wish I could remember what it was…..
Based on the brief info, I would give it a shot, especially if the chemo dosn't touch the mel. There was discussion of starting this new drug and then adding yervoy (which can take weeks to begin working).
Just a thought.
-
- June 8, 2011 at 7:01 am
Did your Dr. mention the new limuab type drug? I saw it on CNN – apparantly it works faster than yervoy (ipi) and within 72 hours. I think it was one of the drugs in the BRIM3 trial but don't quote me on it.
I just saw the news yesterday so google the news networks on the drug, I wish I could remember what it was…..
Based on the brief info, I would give it a shot, especially if the chemo dosn't touch the mel. There was discussion of starting this new drug and then adding yervoy (which can take weeks to begin working).
Just a thought.
-
- June 8, 2011 at 11:16 am
Dear Shari,
Sorry to hear about your news but glad you came back to post it. I hope the Yervoy works for you…it did for me. GOOD LUCK!
Vermont_Donna, stage 3a, now NED due to yervoy
-
- June 8, 2011 at 11:16 am
Dear Shari,
Sorry to hear about your news but glad you came back to post it. I hope the Yervoy works for you…it did for me. GOOD LUCK!
Vermont_Donna, stage 3a, now NED due to yervoy
-
- June 8, 2011 at 11:42 am
Sorry to hear about the spread Shari. You and my husband are in a similar situation; he had chemo last week to try to fight off some of the burden in hopeful preparation for a new BRAF trial (he couldn't get into the last one because his liver function numbers weren't high enough…he has a "too numerous to count" burden in there).
My thoughts are with you right now and just try to be strong. You CAN do this!
Best wishes and blessings.
Michelle, wife of Don, Stage IV
-
- June 8, 2011 at 11:42 am
Sorry to hear about the spread Shari. You and my husband are in a similar situation; he had chemo last week to try to fight off some of the burden in hopeful preparation for a new BRAF trial (he couldn't get into the last one because his liver function numbers weren't high enough…he has a "too numerous to count" burden in there).
My thoughts are with you right now and just try to be strong. You CAN do this!
Best wishes and blessings.
Michelle, wife of Don, Stage IV
-
- June 8, 2011 at 11:52 am
Hi Shari,
I remember reading your post about your stomach. I am so sorry to hear the news. Please know you and your family are in my daily prayers and your peace will get you through this next battle.
Laurie
-
- June 8, 2011 at 11:52 am
Hi Shari,
I remember reading your post about your stomach. I am so sorry to hear the news. Please know you and your family are in my daily prayers and your peace will get you through this next battle.
Laurie
-
- June 8, 2011 at 2:11 pm
Shari, I'm so sorry to hear this latest news. I remember you concerns about your extended stomach and now to discover it is melanoma, how very sad. Your doctor sounds like he moves quickly though so let's pray he gets you on the first treatment and then on to yervoy. Best wishes, you and your young son are in my thoughts, Val xx stage IV
-
- June 8, 2011 at 2:11 pm
Shari, I'm so sorry to hear this latest news. I remember you concerns about your extended stomach and now to discover it is melanoma, how very sad. Your doctor sounds like he moves quickly though so let's pray he gets you on the first treatment and then on to yervoy. Best wishes, you and your young son are in my thoughts, Val xx stage IV
-
- June 8, 2011 at 4:22 pm
Shari – I am so sorry to hear this. I pray the treatment over the weekend helps you some so you can qualify for Yervoy.
My husband 's Melanoma that started on his scalp went to his stomach area. He was in a great deal of pain toward the end before he took the pain meds. He led a quality life for 4 years + 2 months, with only alternative stuff & supplements….but then Mel got ahold of him good in September and just exploded, tumors everywhere. with the worst being in the stomach area. He had emergency surgery and they resected one place, but told me he had like 13 more that were going to do the same….and at this point he was also having blood transfusions every 14 days or so.
I hope the treatment works and give you much more time. Thinking of you, praying for you and sending you hugs.
Take Care,
Sherron, wife to Jim FOREVER
-
- June 8, 2011 at 4:22 pm
Shari – I am so sorry to hear this. I pray the treatment over the weekend helps you some so you can qualify for Yervoy.
My husband 's Melanoma that started on his scalp went to his stomach area. He was in a great deal of pain toward the end before he took the pain meds. He led a quality life for 4 years + 2 months, with only alternative stuff & supplements….but then Mel got ahold of him good in September and just exploded, tumors everywhere. with the worst being in the stomach area. He had emergency surgery and they resected one place, but told me he had like 13 more that were going to do the same….and at this point he was also having blood transfusions every 14 days or so.
I hope the treatment works and give you much more time. Thinking of you, praying for you and sending you hugs.
Take Care,
Sherron, wife to Jim FOREVER
-
- June 8, 2011 at 8:59 pm
Shari,
I'm really sorry you are going through this and your news wasn't as you hoped. I too went to Stage 4 this morning and I'm in survival mode myself. Chemo has a 20% response rate – I truly hope this works for you in killing or slowing down the melanoma. If it works, it might continue to work to buy you time to get the yervoy. If the yervoy works, it can lasts up to 2 years! Luckily you don't have to wait long to know if it's working. Don't ever give up! There are people on this board who struggled and are still here years later. I believe in you and I'm going to keep my fingers crossed for you.
Lisa
-
- June 8, 2011 at 8:59 pm
Shari,
I'm really sorry you are going through this and your news wasn't as you hoped. I too went to Stage 4 this morning and I'm in survival mode myself. Chemo has a 20% response rate – I truly hope this works for you in killing or slowing down the melanoma. If it works, it might continue to work to buy you time to get the yervoy. If the yervoy works, it can lasts up to 2 years! Luckily you don't have to wait long to know if it's working. Don't ever give up! There are people on this board who struggled and are still here years later. I believe in you and I'm going to keep my fingers crossed for you.
Lisa
-
- June 8, 2011 at 9:21 pm
Shari,
Last year I've had an internal melanoma golf ball size removed with my uterus- I've bled almost to death and I've had a blood transfusion to bring me back to life-I was being told I have few months to live…..one year on I am still alive and kicking.Nobody really know what God had lined up for you.Please do not despair, try to stay strong and positive-positive mental attitude is crucial it the fight with this hell of disease.I was not religious but I pray every day now.Do the same,stay strong.
I am sending you positive thoughts and wishes all along the way,
Teodora
-
- June 8, 2011 at 9:21 pm
Shari,
Last year I've had an internal melanoma golf ball size removed with my uterus- I've bled almost to death and I've had a blood transfusion to bring me back to life-I was being told I have few months to live…..one year on I am still alive and kicking.Nobody really know what God had lined up for you.Please do not despair, try to stay strong and positive-positive mental attitude is crucial it the fight with this hell of disease.I was not religious but I pray every day now.Do the same,stay strong.
I am sending you positive thoughts and wishes all along the way,
Teodora
-
- June 8, 2011 at 10:06 pm
Oh Sweetie, this just breaks my heart…it makes me so angry about melanoma…i hope the cisplatin combo (which is good for brca's) gets the tumor load down for yervoy…praying for you
boots
-
- June 8, 2011 at 10:06 pm
Oh Sweetie, this just breaks my heart…it makes me so angry about melanoma…i hope the cisplatin combo (which is good for brca's) gets the tumor load down for yervoy…praying for you
boots
-
- You must be logged in to reply to this topic.