home from surgery

This topic has 28 replies, 12 voices, and was last updated 13 years, 6 months ago by LynnLuc.

Post

- October 16, 2010 at 2:15 pm
- Quote
lhaley
Participant
Surgery went well yesterday. The Dr. said better than expected. What did he expect???? He was concerned that the tumor on my arm was entangled in nerves – it wasn't!! He also took three nodes from under the collarbone. We know from a fna that one was melanoma. More than 5 weeks from first ultra sound to do surgery since a second spot was picked up. During that time there was no growth!!

Surgery went well yesterday. The Dr. said better than expected. What did he expect???? He was concerned that the tumor on my arm was entangled in nerves – it wasn't!! He also took three nodes from under the collarbone. We know from a fna that one was melanoma. More than 5 weeks from first ultra sound to do surgery since a second spot was picked up. During that time there was no growth!!

Back to the tumor board to decide next step. Since hopefully will be at NED status once again (yeah!!) there are really no options. I've already done Leukine and have had 4 recurrances through out the body since then. It was my choice to operate and not go with a trial or IL2. They are testing me for B-raf and there is discussion about doing interfuron even though I'm stage IV. My melanoma has presented in a unique way – solitary tumors and this is the first time in a node – over the past 4 years.

My body has proven by my allergies to be very sensitive to any medications. I hear the tumor boards recommendations in 2 weeks. Celebrating the day by feeding the grandbaby this morning and now sitting on the couch watching football.

Linda

Stage IV hopefully NED once again!!

Viewing 21 reply threads

Replies

- - October 16, 2010 at 2:58 pm
  - Quote
  Sherron
  Participant
  Hi Linda….so glad things went well….you are home, already loving the grandbaby…That is about good as it gets. They cn put smiles of your face even when you don't feel like smiling….Praying for a good recovery and hopefully NED.
  
  Take Care,
  
  Sherron, wife to Jim
- - October 16, 2010 at 2:58 pm
  - Quote
  Sherron
  Participant
  Hi Linda….so glad things went well….you are home, already loving the grandbaby…That is about good as it gets. They cn put smiles of your face even when you don't feel like smiling….Praying for a good recovery and hopefully NED.
  
  Take Care,
  
  Sherron, wife to Jim
- - October 16, 2010 at 3:10 pm
  - Quote
  ValinMtl
  Participant
  Glad your surgery is over, let's pray that you are NED once again. Val
- - October 16, 2010 at 3:10 pm
  - Quote
  ValinMtl
  Participant
  Glad your surgery is over, let's pray that you are NED once again. Val
- - October 16, 2010 at 3:18 pm
  - Quote
  dian in spokane
  Participant
  hey linda…maybe they can use that tumor for a vaccine??? Not mine, but..maybe there's one out on your side of the country…
- - October 16, 2010 at 3:18 pm
  - Quote
  dian in spokane
  Participant
  hey linda…maybe they can use that tumor for a vaccine??? Not mine, but..maybe there's one out on your side of the country…
  - October 16, 2010 at 6:34 pm
    
    Quote
    lhaley
    Participant
    
    Dian
    
    I have a meeting in 2 weeks with the mel specialist. I'm going to ask him what's available. Have already asked to be tested for B-raf.
    
    Linda
  - October 16, 2010 at 6:34 pm
    
    Quote
    lhaley
    Participant
    
    Dian
    
    I have a meeting in 2 weeks with the mel specialist. I'm going to ask him what's available. Have already asked to be tested for B-raf.
    
    Linda
- - October 16, 2010 at 3:18 pm
  - Quote
  joy_
  Participant
  Prayers that you are NED once again!
  
  Tracy
  
  wife to Bill, stage IIIc
- - October 16, 2010 at 3:18 pm
  - Quote
  joy_
  Participant
  Prayers that you are NED once again!
  
  Tracy
  
  wife to Bill, stage IIIc
- - October 16, 2010 at 4:36 pm
  - Quote
  Eileen L
  Participant
  Great news Linda. Enjoy the day. I am thinking of you.
  
  Eileen L
- - October 16, 2010 at 4:36 pm
  - Quote
  Eileen L
  Participant
  Great news Linda. Enjoy the day. I am thinking of you.
  
  Eileen L
- - October 16, 2010 at 4:37 pm
  - Quote
  Eileen L
  Participant
  Great news Linda. Enjoy the day. I am thinking of you.
  
  Eileen L
- - October 16, 2010 at 4:37 pm
  - Quote
  Eileen L
  Participant
  Great news Linda. Enjoy the day. I am thinking of you.
  
  Eileen L
- - October 16, 2010 at 4:57 pm
  - Quote
  Rebecca and Bob
  Participant
  Linda,
  
  Glad to hear you are NED again, and hopefully will stay that way. I have heard of people doing really well with IL-2 after surgery. This is such a tough disease but you are such an inspiration to all. Enjoy that baby and relax!!!!
  
  Thinking of you,
  
  Rebecca
- - October 16, 2010 at 4:57 pm
  - Quote
  Rebecca and Bob
  Participant
  Linda,
  
  Glad to hear you are NED again, and hopefully will stay that way. I have heard of people doing really well with IL-2 after surgery. This is such a tough disease but you are such an inspiration to all. Enjoy that baby and relax!!!!
  
  Thinking of you,
  
  Rebecca
- - October 17, 2010 at 1:28 am
  - Quote
  jag
  Participant
  Linda, I definitely think that minimizing ones tumor burden is a good way to go. Very happy to hear that surgery was able to effectively put you back at Day 1.
  
  Very best with your new beginning.
  
  John
- - October 17, 2010 at 1:28 am
  - Quote
  jag
  Participant
  Linda, I definitely think that minimizing ones tumor burden is a good way to go. Very happy to hear that surgery was able to effectively put you back at Day 1.
  
  Very best with your new beginning.
  
  John
- - October 17, 2010 at 2:08 am
  - Quote
  King
  Participant
  Linda,
  
  I like the way you celebrate!!! I'm happy the surgery is over. I'll be very interested in what the tumor board recommends for treatment. That would be different if Interferon is recommended at Stage IV. I know it is used in some European countries for Stage IV. I'm not sure if they do a high dose month but are on a low dose (lower than the standard here) for a couple of years if I remember correctly.
  
  Take care and heal quickly. Spend as much time as possible with the grandbaby…the best medicine of all!
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - October 17, 2010 at 2:08 am
  - Quote
  King
  Participant
  Linda,
  
  I like the way you celebrate!!! I'm happy the surgery is over. I'll be very interested in what the tumor board recommends for treatment. That would be different if Interferon is recommended at Stage IV. I know it is used in some European countries for Stage IV. I'm not sure if they do a high dose month but are on a low dose (lower than the standard here) for a couple of years if I remember correctly.
  
  Take care and heal quickly. Spend as much time as possible with the grandbaby…the best medicine of all!
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - October 17, 2010 at 3:13 am
  - Quote
  lovingwifedeb
  Participant
  Linda,
  
  I'm glad surgery went well and you are home enjoying family time. Whatever you decide to do in the future please take care of yourself. I'm no scientist so I don't have any promises for you. But I have learned in a very short time that our body need nourishment, so make it worth it's effort in your recovery.
  
  Peace be with you.
  
  Deb
  
  lovingwife to Bob, stage 3c
- - October 17, 2010 at 3:13 am
  - Quote
  lovingwifedeb
  Participant
  Linda,
  
  I'm glad surgery went well and you are home enjoying family time. Whatever you decide to do in the future please take care of yourself. I'm no scientist so I don't have any promises for you. But I have learned in a very short time that our body need nourishment, so make it worth it's effort in your recovery.
  
  Peace be with you.
  
  Deb
  
  lovingwife to Bob, stage 3c
- - October 17, 2010 at 1:23 pm
  - Quote
  Sharyn
  Participant
  Hi Linda,
  
  Aren't grandchildren a wonderful way to help you escape the realities of this disease? I'm so glad you're finding joy amidst all this crap! The hard part now is waiting for results, but as soon as you get them, I'm sure you'll post. As for further treatment, I'm surprised they're considering interferon. There is no research (at least I don't think there is) that demonstrates effectiveness on Stage IV patients. What about Ipi? Or better yet, if you have the BRAF mutation, PLX4032? Anyway, we're all here to help you decide, once the time comes. Meanwhile, relax, enjoy your grandchild, and get better. Healing vibes coming from Newfoundland!
  
  Hugs
  
  Sharyn
  
  Stage IV
  - October 17, 2010 at 6:58 pm
    
    Quote
    lhaley
    Participant
    
    Sharyn,
    
    The issue is that I should be NED again. No trial will let you in at stage IV unless you have measurable disease. Now stage 3 NED there are trials that you take the chance of getting the placebo. So I am very lucky that I should be NED, but then it leaves me with no options. I know that the oncologist would have preferred for me to have left a tumor and gone systemic but the one on my arm was hitting a nerve and I wanted it out. The lymph node was too small to be eligible for studies.
    
    Meanwhile Savannah is still here, leaving in a bit. She has definitely been a joy this weekend! She couldn't understand that I couldn't lift her but I did manage to have some play time and we took a walk with her stroller. She is coming back next weekend and by then I should be really ready to play with her.
    
    Linda
  - October 18, 2010 at 7:42 pm
    
    Quote
    LynnLuc
    Participant
    
    Hi! To dispel a rumor There is A trial that requires you to be NED with no measureable disease…I found it and I am currently in it!
    
    It's called " Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma" . It is a promising recipe of peptides and using a anti-pd 1 (MDX-1106) and Dr Weber at Moffitt in Florida is the lead investigator and my oncologist now. I am North Dakota and in the process of moving to Florida…the flights are just to expensive to keep going back and forth.
    
    Thanks, Lynn
  - October 18, 2010 at 7:42 pm
    
    Quote
    LynnLuc
    Participant
    
    Hi! To dispel a rumor There is A trial that requires you to be NED with no measureable disease…I found it and I am currently in it!
    
    It's called " Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma" . It is a promising recipe of peptides and using a anti-pd 1 (MDX-1106) and Dr Weber at Moffitt in Florida is the lead investigator and my oncologist now. I am North Dakota and in the process of moving to Florida…the flights are just to expensive to keep going back and forth.
    
    Thanks, Lynn
  - October 17, 2010 at 6:58 pm
    
    Quote
    lhaley
    Participant
    
    Sharyn,
    
    The issue is that I should be NED again. No trial will let you in at stage IV unless you have measurable disease. Now stage 3 NED there are trials that you take the chance of getting the placebo. So I am very lucky that I should be NED, but then it leaves me with no options. I know that the oncologist would have preferred for me to have left a tumor and gone systemic but the one on my arm was hitting a nerve and I wanted it out. The lymph node was too small to be eligible for studies.
    
    Meanwhile Savannah is still here, leaving in a bit. She has definitely been a joy this weekend! She couldn't understand that I couldn't lift her but I did manage to have some play time and we took a walk with her stroller. She is coming back next weekend and by then I should be really ready to play with her.
    
    Linda
- - October 17, 2010 at 1:23 pm
  - Quote
  Sharyn
  Participant
  Hi Linda,
  
  Aren't grandchildren a wonderful way to help you escape the realities of this disease? I'm so glad you're finding joy amidst all this crap! The hard part now is waiting for results, but as soon as you get them, I'm sure you'll post. As for further treatment, I'm surprised they're considering interferon. There is no research (at least I don't think there is) that demonstrates effectiveness on Stage IV patients. What about Ipi? Or better yet, if you have the BRAF mutation, PLX4032? Anyway, we're all here to help you decide, once the time comes. Meanwhile, relax, enjoy your grandchild, and get better. Healing vibes coming from Newfoundland!
  
  Hugs
  
  Sharyn
  
  Stage IV