Here we go again ……

This topic has 30 replies, 13 voices, and was last updated 13 years, 4 months ago by Rebecca and Bob.

Post

- December 8, 2010 at 3:03 am
- Quote
lhaley
Participant
2 months ago I had surgery for 2 different sites. Today I had PET/CT scan. This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm. Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions.

2 months ago I had surgery for 2 different sites. Today I had PET/CT scan. This time they found a tumor in the right lung, actually 2 tumors. One was stable from previous scans (didn't know I had any before!!) . The other doubled in size but is still small. .6 x .7 cm. Too small to biopsy, too small for trials. In 3 months they will rescan and make decisions.

We looked back at previous scans and in retrospect it could be seen as a spec in Sept. of 09. I guess the good news is that it's slow growing. Meanwhile I got back the testing on the tumor that was removed and I am B-raf positive.

My history is a bit unique. For those of you who don't know I was originally diagonsed in 79' with my first recurrance in 06. Since then I've had 1 recurrance in breast, 2 in bladder, 1 in lymph node under clavicle, 1 in lymph node in arm and now this. Because my immune system has slowed everything down, my mel specialist is leaning towards immunitherapy at this point to give my system a boost. I guess dicisions are being made in 3 months.

Sure wish I could have been happy dancing tonight.

Linda

Viewing 21 reply threads

Replies

- - December 8, 2010 at 8:43 am
  - Quote
  djpayn
  Participant
  Linda,
  
  im so sorry that you have found new tumors. please let me know if there is anything you need.
  
  Stay Strong my friend!
  
  Dawna
- - December 8, 2010 at 8:43 am
  - Quote
  djpayn
  Participant
  Linda,
  
  im so sorry that you have found new tumors. please let me know if there is anything you need.
  
  Stay Strong my friend!
  
  Dawna
- - December 8, 2010 at 11:11 am
  - Quote
  akls
  Participant
  Linda,
  
  I'm sorry you didn't get the news you wanted with these scans. You are one strong lady and I know you will come up with a great treatment plan. I would say that the fact that these nodules are very slow growing is good news. You are in my prayers.
  
  Amy S. in Michigan
- - December 8, 2010 at 11:11 am
  - Quote
  akls
  Participant
  Linda,
  
  I'm sorry you didn't get the news you wanted with these scans. You are one strong lady and I know you will come up with a great treatment plan. I would say that the fact that these nodules are very slow growing is good news. You are in my prayers.
  
  Amy S. in Michigan
- - December 8, 2010 at 1:25 pm
  - Quote
  Sherron
  Participant
  Linda – I am so sorry….Keep fighting. and keep positive. Jim was the ultimate optomist…..He still believed up to the last day, he might get better….Can/t write much now….too hard…
  
  Talke Care,
  
  Sherron, wife to Jim FOREVER
- - December 8, 2010 at 1:25 pm
  - Quote
  Sherron
  Participant
  Linda – I am so sorry….Keep fighting. and keep positive. Jim was the ultimate optomist…..He still believed up to the last day, he might get better….Can/t write much now….too hard…
  
  Talke Care,
  
  Sherron, wife to Jim FOREVER
- - December 8, 2010 at 3:09 pm
  - Quote
  vivian
  Participant
  Linda,
  
  I was hoping to hear you had good news, and I am so sorry that's not the case with your scans. I am sending lots of Delaware positive energy and thoughts down to your South Carolina immune system.
  
  Fondly,
  
  Vivian
- - December 8, 2010 at 3:09 pm
  - Quote
  vivian
  Participant
  Linda,
  
  I was hoping to hear you had good news, and I am so sorry that's not the case with your scans. I am sending lots of Delaware positive energy and thoughts down to your South Carolina immune system.
  
  Fondly,
  
  Vivian
- - December 8, 2010 at 6:30 pm
  - Quote
  King
  Participant
  Hi Linda,
  
  Sorry to hear these scan results. Waiting 3 months will be tough I would think. Being BRAF positive will give you more good options. One day at a time. Focus on the bit of good news for now…slow growing.
  
  Stay Strong
  
  King
  
  Stage IV 7/05 Liver mets
- - December 8, 2010 at 6:30 pm
  - Quote
  King
  Participant
  Hi Linda,
  
  Sorry to hear these scan results. Waiting 3 months will be tough I would think. Being BRAF positive will give you more good options. One day at a time. Focus on the bit of good news for now…slow growing.
  
  Stay Strong
  
  King
  
  Stage IV 7/05 Liver mets
- - December 8, 2010 at 7:19 pm
  - Quote
  Shelly in Switzerland
  Participant
  Dear Linda,
  
  I am so sorry to hear your news. Growing slowly is good though; giving you time to make your plan instead fearing that time is your enemy. Surgery may also be a good option. My lung tumors were removed without incidence via VATS. When you say immunotherapy do you mean Ipi?
  
  I will keep in my prayers.
  
  Blessings to you,
  
  Shelly
  - December 9, 2010 at 2:53 pm
    
    Quote
    lhaley
    Participant
    
    Shelly,
    
    Both IL2 and Ipi were discussed as possibilities. My Dr. thought that Ipi would be FDA approved in March. He said that if not he went through the compassionate care process. I know that VATs is a possibility (although this was not brought up). He's thinking that tumors are appearing now at a regular pace in different places in the body. It's time to try and stop the randomness. He did say that if this is still the only spot in 3 months it would be discussed. Tell you the truth, I'm not sure at what point of the discussion but both my husband and I lost track of the conversation. I know he's taking my case to the tumor board again (I think this is the 5th or 6th time) but not sure if it's next week or waiting till my next scans. Stress will do that to you!
    
    When your tumor was removed from the lungs were you then NED?
    
    Linda
  - December 9, 2010 at 2:53 pm
    
    Quote
    lhaley
    Participant
    
    Shelly,
    
    Both IL2 and Ipi were discussed as possibilities. My Dr. thought that Ipi would be FDA approved in March. He said that if not he went through the compassionate care process. I know that VATs is a possibility (although this was not brought up). He's thinking that tumors are appearing now at a regular pace in different places in the body. It's time to try and stop the randomness. He did say that if this is still the only spot in 3 months it would be discussed. Tell you the truth, I'm not sure at what point of the discussion but both my husband and I lost track of the conversation. I know he's taking my case to the tumor board again (I think this is the 5th or 6th time) but not sure if it's next week or waiting till my next scans. Stress will do that to you!
    
    When your tumor was removed from the lungs were you then NED?
    
    Linda
- - December 8, 2010 at 7:19 pm
  - Quote
  Shelly in Switzerland
  Participant
  Dear Linda,
  
  I am so sorry to hear your news. Growing slowly is good though; giving you time to make your plan instead fearing that time is your enemy. Surgery may also be a good option. My lung tumors were removed without incidence via VATS. When you say immunotherapy do you mean Ipi?
  
  I will keep in my prayers.
  
  Blessings to you,
  
  Shelly
- - December 8, 2010 at 7:35 pm
  - Quote
  jag
  Participant
  Linda, any idea of the scanner resolution?(if it is 1cm slices, they may have missed it last scan) I had my left lung removed the whole time I had what could have been a met in my right lung, it just didn't change for so long that they didn't believe it was melanoma. Do you know the SUV score? Not trying to get your hopes up, just hoping they are actually benign.
  
  Best
  
  John
  
  If they are real, I would definitely look into surgical options with a repeat scan soon.
  - December 8, 2010 at 10:22 pm
    
    Quote
    lhaley
    Participant
    
    John,
    
    With moving I've had my scans done this past year at 3 different places! Wilm. NC did not have you drink contrast, Greenville Sc had me drink a thin contrast, now I'm having them done in Charlotte with my melanoma specialist. They had me drink a thick contrast and the protocal was different. I'll have to call and ask the resolutions. It was spotted this time and they only saw it when they went backwards on the scans. Thanks for the idea!!
    
    I am also going to e-mail the Dr. and try to negotiate a 2 month scan or possibly an mri instead.
    
    Linda
  - December 8, 2010 at 10:22 pm
    
    Quote
    lhaley
    Participant
    
    John,
    
    With moving I've had my scans done this past year at 3 different places! Wilm. NC did not have you drink contrast, Greenville Sc had me drink a thin contrast, now I'm having them done in Charlotte with my melanoma specialist. They had me drink a thick contrast and the protocal was different. I'll have to call and ask the resolutions. It was spotted this time and they only saw it when they went backwards on the scans. Thanks for the idea!!
    
    I am also going to e-mail the Dr. and try to negotiate a 2 month scan or possibly an mri instead.
    
    Linda
- - December 8, 2010 at 7:35 pm
  - Quote
  jag
  Participant
  Linda, any idea of the scanner resolution?(if it is 1cm slices, they may have missed it last scan) I had my left lung removed the whole time I had what could have been a met in my right lung, it just didn't change for so long that they didn't believe it was melanoma. Do you know the SUV score? Not trying to get your hopes up, just hoping they are actually benign.
  
  Best
  
  John
  
  If they are real, I would definitely look into surgical options with a repeat scan soon.
- - December 8, 2010 at 8:51 pm
  - Quote
  ValinMtl
  Participant
  Hi Linda, I read this earlier..didn't know what to say…so I am back reading it again…so sad for you. But you're a fighter and you can do this again…we're in your court and praying for good decisions to be made by doctors. Val, Stage IV, currently on compassionate ipi.
- - December 8, 2010 at 8:51 pm
  - Quote
  ValinMtl
  Participant
  Hi Linda, I read this earlier..didn't know what to say…so I am back reading it again…so sad for you. But you're a fighter and you can do this again…we're in your court and praying for good decisions to be made by doctors. Val, Stage IV, currently on compassionate ipi.
- - December 8, 2010 at 10:35 pm
  - Quote
  dian in spokane
  Participant
  You are my hero!
  
  Maybe in three months it will have SHRUNK! I can't tell you how many times my lungs have shown something that someone thought was likely melanoma (going clear back to 2003) and then changed their minds. Heck, I've even had some of those 'nodules' that have continued to look worse on one or two scans before being almost gone on the next.
  
  I hope that for you, that they will be 'almost gone' on the next scan!
  
  good luck to you linda.
  
  dian
  - December 9, 2010 at 1:58 am
    
    Quote
    lhaley
    Participant
    
    Dian,
    
    Thanks for the encouragement! I do remember when they made you wait for the next scan. I do wish that the Dr. hadn't been able to see it back on a scan over a year ago. But, that would mean that it is slow growing if it is indeed mel. I read your post to my husband (he will not read the board) and it made him smile. First one I've seen since the results. I told him how similar our histories have been.
    
    Linda
  - December 9, 2010 at 1:25 pm
    
    Quote
    Nancy
    Participant
    
    Hi Linda,
    
    Keeping you in prayer each day…
    
    Nancy
  - December 9, 2010 at 1:25 pm
    
    Quote
    Nancy
    Participant
    
    Hi Linda,
    
    Keeping you in prayer each day…
    
    Nancy
  - December 9, 2010 at 1:58 am
    
    Quote
    lhaley
    Participant
    
    Dian,
    
    Thanks for the encouragement! I do remember when they made you wait for the next scan. I do wish that the Dr. hadn't been able to see it back on a scan over a year ago. But, that would mean that it is slow growing if it is indeed mel. I read your post to my husband (he will not read the board) and it made him smile. First one I've seen since the results. I told him how similar our histories have been.
    
    Linda
- - December 8, 2010 at 10:35 pm
  - Quote
  dian in spokane
  Participant
  You are my hero!
  
  Maybe in three months it will have SHRUNK! I can't tell you how many times my lungs have shown something that someone thought was likely melanoma (going clear back to 2003) and then changed their minds. Heck, I've even had some of those 'nodules' that have continued to look worse on one or two scans before being almost gone on the next.
  
  I hope that for you, that they will be 'almost gone' on the next scan!
  
  good luck to you linda.
  
  dian
- - December 9, 2010 at 4:36 pm
  - Quote
  JuleFL
  Participant
  Best wishes, Linda. I hope the immunotherapy will get rid of it once and for all!
  Jule
- - December 9, 2010 at 4:36 pm
  - Quote
  JuleFL
  Participant
  Best wishes, Linda. I hope the immunotherapy will get rid of it once and for all!
  Jule
- - December 11, 2010 at 3:35 am
  - Quote
  Rebecca and Bob
  Participant
  Hi Linda,
  
  I"m with John on pushing your scans up to two months. My husband gets scans every two months and I feel better if they did have to do something they will be on top of it. I'm sorry you got this news but hope you feel you have good doctors on your team.
  
  Rebecca
- - December 11, 2010 at 3:35 am
  - Quote
  Rebecca and Bob
  Participant
  Hi Linda,
  
  I"m with John on pushing your scans up to two months. My husband gets scans every two months and I feel better if they did have to do something they will be on top of it. I'm sorry you got this news but hope you feel you have good doctors on your team.
  
  Rebecca