› Forums › General Melanoma Community › Scan Update – NED
- This topic has 34 replies, 9 voices, and was last updated 14 years, 7 months ago by
Erinmay22.
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- June 10, 2011 at 10:08 pm
Just thought I'd give folks an update. Had CT scan done on Wednesday – came back as no evidence of disease! I am excited but still can't believe it.
Quick recap on history – Jan scan showed 12+ nodules ( between both lungs), March 1st VAT's biopsy confirmed melanoma in the lungs. After a long wait for a trial to open up, April 19th scan showed no evidence of growth (all but 1 spot in my lungs were gone!). So while I am BRAF +, I couldn't get in the trial. June 8th scan shows no evidence of disease!
Just thought I'd give folks an update. Had CT scan done on Wednesday – came back as no evidence of disease! I am excited but still can't believe it.
Quick recap on history – Jan scan showed 12+ nodules ( between both lungs), March 1st VAT's biopsy confirmed melanoma in the lungs. After a long wait for a trial to open up, April 19th scan showed no evidence of growth (all but 1 spot in my lungs were gone!). So while I am BRAF +, I couldn't get in the trial. June 8th scan shows no evidence of disease!
I should also note that I have not had ANY drug treatments yet. If we hadn't done a biopsy on the spots in March we'd probably just think I had an infection. Has anyone had this happen? Going to continue a watch and wait. Will scan again August 5th.
Thoughts and prayers out there for everyone!
Erin
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- June 10, 2011 at 10:12 pm
ERIN!!!!!! What a marvelous Hallelujah Moment! Happy Happy Dancing in NC! Prayers that it continues.
Lord, in Your mercy thank You and make it so. Amen and Amen!
Grace and peace,
Carol
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- June 10, 2011 at 10:12 pm
ERIN!!!!!! What a marvelous Hallelujah Moment! Happy Happy Dancing in NC! Prayers that it continues.
Lord, in Your mercy thank You and make it so. Amen and Amen!
Grace and peace,
Carol
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- June 10, 2011 at 10:54 pm
Erin,
I am so happy for you! My Dr has told me that there are known times where the bodies own immune system takes over, fights and wins. Yours must be one of those times! Whatever your doing, just keep doing!
Glad to see they have you on a 2 month schedule so they can carefully watch. May you and Ned become best lifelong friend.
Linda
Stage IV
Surgery results on Tuesday
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- June 10, 2011 at 10:54 pm
Erin,
I am so happy for you! My Dr has told me that there are known times where the bodies own immune system takes over, fights and wins. Yours must be one of those times! Whatever your doing, just keep doing!
Glad to see they have you on a 2 month schedule so they can carefully watch. May you and Ned become best lifelong friend.
Linda
Stage IV
Surgery results on Tuesday
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- June 10, 2011 at 11:10 pm
That is fantastic!
Wondering though….Have you considered a second opinion on the VATS biopsy? I wonder if it was melanoma? As you said, the 12 nodules may just be an infection or something else, maybe the lung biopsy was too? As you are probably aware, the lungs often light up a scan.
Even the best of pathologists can be wrong at least once.
Or….maybe you are one of those rare few that has the right immune system and genetics to kick mel to the curb!
Michael
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- June 10, 2011 at 11:10 pm
That is fantastic!
Wondering though….Have you considered a second opinion on the VATS biopsy? I wonder if it was melanoma? As you said, the 12 nodules may just be an infection or something else, maybe the lung biopsy was too? As you are probably aware, the lungs often light up a scan.
Even the best of pathologists can be wrong at least once.
Or….maybe you are one of those rare few that has the right immune system and genetics to kick mel to the curb!
Michael
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- June 11, 2011 at 12:13 am
Hi Michael –
Yeah even my doctor questioned the pathology reports. I had 2 nodules removed during VAT's. 1 nodule was checked before I even woke up from surgery (showing malignant cells) and then the other nodule was checked by pathology and also tested by the drug company for the BRAF trial. I am BRAF + so that would make me think it was melanoma in the tumor, right?
Oh the rollercoaster ride this puts us on, right?
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- June 11, 2011 at 12:13 am
Hi Michael –
Yeah even my doctor questioned the pathology reports. I had 2 nodules removed during VAT's. 1 nodule was checked before I even woke up from surgery (showing malignant cells) and then the other nodule was checked by pathology and also tested by the drug company for the BRAF trial. I am BRAF + so that would make me think it was melanoma in the tumor, right?
Oh the rollercoaster ride this puts us on, right?
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- June 11, 2011 at 5:12 pm
Interesting indeed. I have been on this board for almost three years, and I find your situation amazing. As Frank said, it does happen, but it is quite rare. I wish we were more advanced so we could figure out what it was in your DNA/immune system that did this.
Yes. Normal or unaltered BRAF protein is involved in sending signals in cells and in cell growth. So, if you tested positive for the V600E mutation, you have the mutated BRAF gene. As well as melanoma, this mutation has also been widely observed in papillary thyroid carcinoma, colorectal cancer, and even in 3% of lung cancers as well.
Michael
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- June 11, 2011 at 5:12 pm
Interesting indeed. I have been on this board for almost three years, and I find your situation amazing. As Frank said, it does happen, but it is quite rare. I wish we were more advanced so we could figure out what it was in your DNA/immune system that did this.
Yes. Normal or unaltered BRAF protein is involved in sending signals in cells and in cell growth. So, if you tested positive for the V600E mutation, you have the mutated BRAF gene. As well as melanoma, this mutation has also been widely observed in papillary thyroid carcinoma, colorectal cancer, and even in 3% of lung cancers as well.
Michael
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- June 11, 2011 at 1:15 am
Erin, that truly wonderful news!! It looks like you have a clever immune system that has
figured out how to stop melanoma cells from growing!!Apparently, 1 in 400 people have a similar experience to you and find that mets disappear
without treatment. Here is a link to the abstract that I posted a little while ago:
http://journals.lww.com/melanomaresearch/pages/articleviewer.aspx?year=2008&issue=08000&article=00007&type=abstractYou are in my prayers and I hope that this will lead to a durable remission.
Frank from Australia
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- June 11, 2011 at 1:15 am
Erin, that truly wonderful news!! It looks like you have a clever immune system that has
figured out how to stop melanoma cells from growing!!Apparently, 1 in 400 people have a similar experience to you and find that mets disappear
without treatment. Here is a link to the abstract that I posted a little while ago:
http://journals.lww.com/melanomaresearch/pages/articleviewer.aspx?year=2008&issue=08000&article=00007&type=abstractYou are in my prayers and I hope that this will lead to a durable remission.
Frank from Australia
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- June 11, 2011 at 2:32 am
Erin,
This is great news. I've been on this board for 7 years now and can't recall anyone having an experience like this. And if you had started a treatment/trial and had this kind of response, it would have been assumed that you were a complete responder to the treatment.
I know you and your doctor will monitor you closely but I'm really hoping that melanoma is in your rear view mirror.
Stay Strong
KingStage IV 7/05 Liver mets
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- June 11, 2011 at 2:32 am
Erin,
This is great news. I've been on this board for 7 years now and can't recall anyone having an experience like this. And if you had started a treatment/trial and had this kind of response, it would have been assumed that you were a complete responder to the treatment.
I know you and your doctor will monitor you closely but I'm really hoping that melanoma is in your rear view mirror.
Stay Strong
KingStage IV 7/05 Liver mets
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- June 12, 2011 at 1:47 am
Yes – if I had not waited so long for a trial, we would have started some tx and just figured it I was a responder to the drug.It’s just so weird… These last 8 months have been crazy! Ive always been pretty healthy. We used to joke that (I have an identical twin sister) when the egg split she got the bad jeans… She was always sick as a kid. In my 32 years I had an ear infection once. Never had strep, mono, etc… So who knows. It’s just so strange and almost hard to believe.
But thanks for the support. I will keep folks posted.
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- June 12, 2011 at 1:37 pm
This is what I don't understand.
I too am the one in my family to never get colds or flu. Yet I am the one with cancer. My husband, daughters and son always get whatever virus comes along and I don't. So doesn't this indicate that my immune system is pretty good?
Could someone please comment?
Nicki, Stage 3b
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- June 12, 2011 at 1:37 pm
This is what I don't understand.
I too am the one in my family to never get colds or flu. Yet I am the one with cancer. My husband, daughters and son always get whatever virus comes along and I don't. So doesn't this indicate that my immune system is pretty good?
Could someone please comment?
Nicki, Stage 3b
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- June 12, 2011 at 2:58 pm
good for you with your strong immune system, that's an awesome asset for you.
melanoma manifests as a mutation or set of mutations. mine is from sun damage (BRAF neg). I think maybe the BRAF mutations are not necessarily/always from sun damage but I'm not sure. anyway cell mutations are a different beast than germ-based illness.
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- June 12, 2011 at 2:58 pm
good for you with your strong immune system, that's an awesome asset for you.
melanoma manifests as a mutation or set of mutations. mine is from sun damage (BRAF neg). I think maybe the BRAF mutations are not necessarily/always from sun damage but I'm not sure. anyway cell mutations are a different beast than germ-based illness.
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- June 12, 2011 at 1:47 am
Yes – if I had not waited so long for a trial, we would have started some tx and just figured it I was a responder to the drug.It’s just so weird… These last 8 months have been crazy! Ive always been pretty healthy. We used to joke that (I have an identical twin sister) when the egg split she got the bad jeans… She was always sick as a kid. In my 32 years I had an ear infection once. Never had strep, mono, etc… So who knows. It’s just so strange and almost hard to believe.
But thanks for the support. I will keep folks posted.
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- June 12, 2011 at 2:53 pm
Erin that's awesome.
Melanoma is characterized as a particularly immunologically sensitive cancer. It can respond to immune stimulating treatments like IL2 and IPI. My oncology doc told our patient support group he thinks a lot more people are walking around with melanoma cells in them than know it, but in many of those cases, the immune system is succesfully keeping the melanoma in check. Maybe (probably) you are one of those cases. He said such people might walk around for 20 years with it held in check.
I would say, take care of your immune system. Maybe not go crazy ingesting every herbal supplement in the world (some can be counterproductive), but some things i do:
-reduce red meat to have less fat coating on immune cells floating through my blood stream
-respect sleep
-lots of tofu, veggiest, fruit
-lots of thai, indian, curry, etc. 🙂 <- not that I'm suffering with that recommendation
-trying to avoid large jolts to my immune system (e.g. breaking my leg)
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- June 12, 2011 at 2:53 pm
Erin that's awesome.
Melanoma is characterized as a particularly immunologically sensitive cancer. It can respond to immune stimulating treatments like IL2 and IPI. My oncology doc told our patient support group he thinks a lot more people are walking around with melanoma cells in them than know it, but in many of those cases, the immune system is succesfully keeping the melanoma in check. Maybe (probably) you are one of those cases. He said such people might walk around for 20 years with it held in check.
I would say, take care of your immune system. Maybe not go crazy ingesting every herbal supplement in the world (some can be counterproductive), but some things i do:
-reduce red meat to have less fat coating on immune cells floating through my blood stream
-respect sleep
-lots of tofu, veggiest, fruit
-lots of thai, indian, curry, etc. 🙂 <- not that I'm suffering with that recommendation
-trying to avoid large jolts to my immune system (e.g. breaking my leg)
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- June 12, 2011 at 11:49 pm
Thanks for the note! I know too my family was frustarted about how I being the 'healthy' one could end up with cancer… but as my mom and I discussed on Friday I'm probably the one who could have handled it the best – not that anyone should ever have to handle it and go thru the things we have!
Well I suppose if I hadn't had a mole that was changing, I would have just kept on going the way I was. I was tired but figured it was because I worked 12 days on 2 days off, 12 hours a day (or so it seemed most days!)
But maybe I can keep it at bay for awhile longer. I guess we just never know, right? But thanks for the advice. I do know that I have tried a few things to help take care of my immune system (but not overboard!). I am not a huge red meat person anyway – but do enjoy a tasty burger or steak every now and then! but have typically been a chicken or seafood person. Sleep is for sure the thing I need to get better at! I haven't had a decent nights sleep in months – but between surgeries and anxiety it's hard to let go and sleep.
Here's to good health for you guys!
Erin
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- June 12, 2011 at 11:49 pm
Thanks for the note! I know too my family was frustarted about how I being the 'healthy' one could end up with cancer… but as my mom and I discussed on Friday I'm probably the one who could have handled it the best – not that anyone should ever have to handle it and go thru the things we have!
Well I suppose if I hadn't had a mole that was changing, I would have just kept on going the way I was. I was tired but figured it was because I worked 12 days on 2 days off, 12 hours a day (or so it seemed most days!)
But maybe I can keep it at bay for awhile longer. I guess we just never know, right? But thanks for the advice. I do know that I have tried a few things to help take care of my immune system (but not overboard!). I am not a huge red meat person anyway – but do enjoy a tasty burger or steak every now and then! but have typically been a chicken or seafood person. Sleep is for sure the thing I need to get better at! I haven't had a decent nights sleep in months – but between surgeries and anxiety it's hard to let go and sleep.
Here's to good health for you guys!
Erin
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- June 13, 2011 at 12:36 am
Erin
Your last post really hit home with me. I am the one in my family who has always carried all of the burdens – if my husband gets sick he is the BIGGEST baby and has come very close to being sent home to mama a few times. Needless to say I would never want my kids to carry this.
I feel the same way about this happening to me – I would have continued on the way I was. I had been under 5 yrs of heavy, heavy stress between my mother getting sick and dying and serious financial issues in the household. I was literally getting about 3 hours of sleep a night for years. I ate like crap and was running on I don't know what. For whatever it is worth I firmly believe that my situation was not caused by sun damage to my skin (not that I never had any) but due to stress, and losing myself in all that was happening in my life. I also, need to get better at sleep. I think I have seriously hampered my ability to get a good nights sleep with all of the craziness I put my body through and now dealing with Mel. I try but it still eludes me some nights.
All my best to you in your journey – keep us posted. Even though I don't know any of the people here – it feels as if they are all family in some way.
Hugs and Smiles to you
Dawn
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- June 13, 2011 at 12:36 am
Erin
Your last post really hit home with me. I am the one in my family who has always carried all of the burdens – if my husband gets sick he is the BIGGEST baby and has come very close to being sent home to mama a few times. Needless to say I would never want my kids to carry this.
I feel the same way about this happening to me – I would have continued on the way I was. I had been under 5 yrs of heavy, heavy stress between my mother getting sick and dying and serious financial issues in the household. I was literally getting about 3 hours of sleep a night for years. I ate like crap and was running on I don't know what. For whatever it is worth I firmly believe that my situation was not caused by sun damage to my skin (not that I never had any) but due to stress, and losing myself in all that was happening in my life. I also, need to get better at sleep. I think I have seriously hampered my ability to get a good nights sleep with all of the craziness I put my body through and now dealing with Mel. I try but it still eludes me some nights.
All my best to you in your journey – keep us posted. Even though I don't know any of the people here – it feels as if they are all family in some way.
Hugs and Smiles to you
Dawn
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- June 13, 2011 at 12:53 am
I've had a sleep disorder for years. And cancer added anxiety so my sleeping was worse than ever.
Being pretty independent and not much for prescription meds, I never wanted to go the sleeping pill route but it seemed like every doctor and every nurse I saw for cancer treatment stressed the need for plenty of sleep. I finally told my onc how little sleep I was getting and she convinced me to try Ambien, a mild sleep aid. It worked really well with no side effects.
Now I've just started useing ganoderma (reishi mushroom) capsules before bed and they work as well as Ambien.
Plenty of rest is so important for the immune system.
Nicki, Stage 3b
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- June 13, 2011 at 12:53 am
I've had a sleep disorder for years. And cancer added anxiety so my sleeping was worse than ever.
Being pretty independent and not much for prescription meds, I never wanted to go the sleeping pill route but it seemed like every doctor and every nurse I saw for cancer treatment stressed the need for plenty of sleep. I finally told my onc how little sleep I was getting and she convinced me to try Ambien, a mild sleep aid. It worked really well with no side effects.
Now I've just started useing ganoderma (reishi mushroom) capsules before bed and they work as well as Ambien.
Plenty of rest is so important for the immune system.
Nicki, Stage 3b
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- June 13, 2011 at 1:10 am
Thanks for that info Nicki
I have never wanted to go the route of prescription meds for sleeping either – my brother in law has some woppers of stories about what he has done on sleeping meds so not to excited about them. I will be looking into the ganoderma capsules. I really like sleep but it always seems to end at about 2am.
Hugs and Smiles
Dawn
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- June 13, 2011 at 1:10 am
Thanks for that info Nicki
I have never wanted to go the route of prescription meds for sleeping either – my brother in law has some woppers of stories about what he has done on sleeping meds so not to excited about them. I will be looking into the ganoderma capsules. I really like sleep but it always seems to end at about 2am.
Hugs and Smiles
Dawn
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- June 13, 2011 at 10:46 am
Well ladies I'm glad I'm not the only one struggling with sleep – although I suppose that is to be expected? I even took a few days off of work during my last set of scans and appointments just because I was so exhausted! This has been an emotional rollercoaster and I don't think my job has totally understood why it's caused me such anxiety since in their eyes "I look healthy".
But I too have yet to try sleeping aids. I tried not eating too late at night, cutting out caffiene, exercising, etc. And I was EXHAUSTED and falling asleep on the couch while watching the news at night but when I'd get in bed – I'd be wide awake! I'd maybe finally fall asleep around 12-1am only to wake up several times thru the night and be up by 5:30. I think I could take 2 weeks off from work just to lounge around and sleep 🙂
But I think thru all this I've tried to remember to put myself first. If I'm sleepy and feel like a nap, I take one. I've pushed myself for my job and now it can wait 🙂
So hang in there ladies!
Erin
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- June 13, 2011 at 10:46 am
Well ladies I'm glad I'm not the only one struggling with sleep – although I suppose that is to be expected? I even took a few days off of work during my last set of scans and appointments just because I was so exhausted! This has been an emotional rollercoaster and I don't think my job has totally understood why it's caused me such anxiety since in their eyes "I look healthy".
But I too have yet to try sleeping aids. I tried not eating too late at night, cutting out caffiene, exercising, etc. And I was EXHAUSTED and falling asleep on the couch while watching the news at night but when I'd get in bed – I'd be wide awake! I'd maybe finally fall asleep around 12-1am only to wake up several times thru the night and be up by 5:30. I think I could take 2 weeks off from work just to lounge around and sleep 🙂
But I think thru all this I've tried to remember to put myself first. If I'm sleepy and feel like a nap, I take one. I've pushed myself for my job and now it can wait 🙂
So hang in there ladies!
Erin
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