› Forums › General Melanoma Community › Dr. is confident…I am SO confused
- This topic has 12 replies, 6 voices, and was last updated 12 years, 9 months ago by
boot2aboot.
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- July 14, 2011 at 11:46 pm
I apologize in advance for my ignorance . A brief history. Back in '06 I had an orange sized area from my left thigh surgically removed that was melanoma (cannot remember the breslow? Clarks…etc.). A SNB was done that came back clear. CT Scans yearly came back clean (later found out only the abdomen and chest were being scanned) In Nov.
I apologize in advance for my ignorance . A brief history. Back in '06 I had an orange sized area from my left thigh surgically removed that was melanoma (cannot remember the breslow? Clarks…etc.). A SNB was done that came back clear. CT Scans yearly came back clean (later found out only the abdomen and chest were being scanned) In Nov. of '10 I felt a lump in my left groin area that turned out to be several nodes of mel as well as metastis to the liver and a "sprinkling" in the lungs. My oncologist at the time really messed up my head by telling me I had "about a year to live" and "there was nothing more he could do". He gave me the name of a melanoma specialist to see which has been my lifeline for the last 8mos. I had left his office with no hope at the time and protected myself mentally (my minds way of doing so) by not willing to hope too much. Makes little sense, but it is what it is. I was willing to fight though.
Fast forward. Was accepted into the OncoVex clinical trial. Tumors in groin were shrinking and Dr. was very hopeful the immune system was taking care of the rest. First CT at 3 mos. showed otherwise. Many new tumors in the liver were found. Dr. wanted to do high dose IL2 asap. Began in early Apr. and ended stay 4 approx. 4 weeks ago. Went for CT last Friday and here is where my question begins. I know what the Dr. said and I feel absolutely blessed, but I am left with questions so I come to you since they sound so ignorant when I think them.
All tumors in the liver are gone except one small area (the original area). No more treatment at this time and Dr. is very confident that area will be gone by next scan (2mos). He also said (and told me he rarely says this to his patients) that he believes by next scan I will be in "complete remission".
I can still feel the tumor in my groin (as it was very large) although it does feel a tad smaller than before. Can you still have tumors and they are not active? Are they dead? Do they disappear in time? If mel returns, does it return to those original areas affected first or it doesn't matter?
I am having such a hard time wrapping my head around all this.
Karin
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- July 15, 2011 at 12:26 am
Karin,
Congrats!!!!! It sounds like you are on your way to a complete response.
The Tumor in your groin area could be necrotic (dead inside with an outer cell layer). If it did not light up on a PET scan, That is a good sign. Your body (Macrophages will eventually chew up the dead cells but it takes time. As for a reoccurrence, if there any satellites cells, they tend to pop up near the original sites. They can however, migrate to new organs.
Best regards
Jimmy B
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- July 15, 2011 at 1:52 am
Thank you Jimmy.
Dr. mentioned doing another Pet scan after the next CT Scan to make sure he "didn't miss anything".
I need to trust him..which I do and stop 2nd guessing. I am sure he wouldn't stop treatment if he thought the disease was active.
Karin
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- July 15, 2011 at 2:29 am
Karin —
The trick is not to trust your doctor blindly. The trick is to become better informed about the disease by coming to sites like this one, listening to people who are knowledgeable, and maybe doing some reading. This will leave you in a position to assess what your doctor says not from a place of fear but from a place of knowledge. If you are like most people, you will wind up asking better questions, getting better answers, and feeling a bit more confident about what you know and what you don't.
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- July 15, 2011 at 2:29 am
Karin —
The trick is not to trust your doctor blindly. The trick is to become better informed about the disease by coming to sites like this one, listening to people who are knowledgeable, and maybe doing some reading. This will leave you in a position to assess what your doctor says not from a place of fear but from a place of knowledge. If you are like most people, you will wind up asking better questions, getting better answers, and feeling a bit more confident about what you know and what you don't.
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- July 15, 2011 at 1:52 am
Thank you Jimmy.
Dr. mentioned doing another Pet scan after the next CT Scan to make sure he "didn't miss anything".
I need to trust him..which I do and stop 2nd guessing. I am sure he wouldn't stop treatment if he thought the disease was active.
Karin
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- July 15, 2011 at 12:26 am
Karin,
Congrats!!!!! It sounds like you are on your way to a complete response.
The Tumor in your groin area could be necrotic (dead inside with an outer cell layer). If it did not light up on a PET scan, That is a good sign. Your body (Macrophages will eventually chew up the dead cells but it takes time. As for a reoccurrence, if there any satellites cells, they tend to pop up near the original sites. They can however, migrate to new organs.
Best regards
Jimmy B
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- July 15, 2011 at 2:32 am
There is no absolutely need to apologise for ignorance, as we are all here to learn and to
support each other. Melanoma is a very tricky beast, and nobody knows all the answers at
the moment.It certainly sounds like the OncoVex clinical trial and the high dose IL2 have been very
beneficial for you.It is really encouraging that the liver tumours have reduced in number and size. A PET
scan will show any areas of active melanoma, so it would be good to have one soon.As melanoma is unpredictable in what is does, tumours can return anywhere in the body
especially if one has any stray cells in the bloodstream. Therefore, it is normal to have
regular scans to keep an eye on things.Hope this helps.
Frank from Australia
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- July 15, 2011 at 2:32 am
There is no absolutely need to apologise for ignorance, as we are all here to learn and to
support each other. Melanoma is a very tricky beast, and nobody knows all the answers at
the moment.It certainly sounds like the OncoVex clinical trial and the high dose IL2 have been very
beneficial for you.It is really encouraging that the liver tumours have reduced in number and size. A PET
scan will show any areas of active melanoma, so it would be good to have one soon.As melanoma is unpredictable in what is does, tumours can return anywhere in the body
especially if one has any stray cells in the bloodstream. Therefore, it is normal to have
regular scans to keep an eye on things.Hope this helps.
Frank from Australia
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- July 15, 2011 at 11:43 am
Karin,
My husband responded to IL-2 in 2008 and had a lung tumor left, they did VATS to remove it and it was dead. That was after a year of watching it, so at that time they considered him a complete responder, then intestinal tumors showed up. However, he had surgery back in 2009 and he just got clear scans from his last surgery. He has been NED for two years.
Like Jimmy B. said a petscan would tell the story if it's dead or not.
Good Luck!
Rebecca
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- July 17, 2011 at 3:55 pm
CT followed by PET AND BRAIN MRI WOULD TELL STORY…even if growth was necrotic,.if you are not under treatment now, why wouldn't surgery to remove nodes not an option?
il2 seems to be good stuff…this is where my onc wants to go after target therapy and chemo
i didn't know your first onc was a clairvoyant…what did he do? look in a crystal ball?
i do know there are studies about attitude and mel and positive vibes go alot further than freaked out vibes…seize the day
boots
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- July 17, 2011 at 3:55 pm
CT followed by PET AND BRAIN MRI WOULD TELL STORY…even if growth was necrotic,.if you are not under treatment now, why wouldn't surgery to remove nodes not an option?
il2 seems to be good stuff…this is where my onc wants to go after target therapy and chemo
i didn't know your first onc was a clairvoyant…what did he do? look in a crystal ball?
i do know there are studies about attitude and mel and positive vibes go alot further than freaked out vibes…seize the day
boots
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- July 15, 2011 at 11:43 am
Karin,
My husband responded to IL-2 in 2008 and had a lung tumor left, they did VATS to remove it and it was dead. That was after a year of watching it, so at that time they considered him a complete responder, then intestinal tumors showed up. However, he had surgery back in 2009 and he just got clear scans from his last surgery. He has been NED for two years.
Like Jimmy B. said a petscan would tell the story if it's dead or not.
Good Luck!
Rebecca
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