› Forums › General Melanoma Community › Another Optimistic Consult
- This topic has 27 replies, 6 voices, and was last updated 11 years, 5 months ago by
buffcody.
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- July 17, 2013 at 10:12 am
I was catching up on my MPIP Bulletin Board reading this morning and read a couple of posts suggesting that posting encouraging news is as important for people reading out here as more difficult experiences. I was diagnosed at Stage IV a year ago June. Operations to remove mets on lung and left buttock, SRS for two brain tumors, one course of Yervoy. I've been NED since the buttock operation on May 1. I had two grand mal seizures on May 11, originally diagnosed as the result of a new brain tumor, later corrected to be a side effect of hematoma from on
I was catching up on my MPIP Bulletin Board reading this morning and read a couple of posts suggesting that posting encouraging news is as important for people reading out here as more difficult experiences. I was diagnosed at Stage IV a year ago June. Operations to remove mets on lung and left buttock, SRS for two brain tumors, one course of Yervoy. I've been NED since the buttock operation on May 1. I had two grand mal seizures on May 11, originally diagnosed as the result of a new brain tumor, later corrected to be a side effect of hematoma from one of the previously radiated brain tumors. In the hospital afterwards for three days.
Yesterday, after another brain MRI last week, my oncologist recommended brain surgery to remove the growing but dead leision manfiesting the hematoma. Though still on anti-swelling and anti seizure medications, the latter for the long term, I'm feeling fine and intend to compete next week in swimming at the National Senior Games in Cleveland, a biannual event, in the 70-74 age group. I've been able to keep up my training through this entire year, though admittedly at a reduced level and some weeks and months at zero.
Brain surgery will take place sometime after next week, of course, not sure yet when but soon. My oncologist at the Univerwsity of Michigan believes that the Yervoy helped me, but, since the only objective measure I have is that there were no new mets except one in my buttock that showed up after the four infusions, I don't fit any of the objective criteria for success (reduction in tumor load or reduction in growth). But whatever the cause of my relatively easy journey, I am most grateful that I'm able to be fully functional, albeit with legal restriction from driving till 6 months after the seizure, and knowing that there are an abundance of new treatments being developed if I need them in the future.
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- July 17, 2013 at 12:11 pm
I think the encouraging posts are definitely as important! Best of luck to you in the swimming competition, though I am sure just being ABLE to compete is a blessing!
Hoping for an easy time of it for you with the upcoming surgery, I am sure you will keep us posted on how you are doing. Thank you for sharing the encouragement this morning!!
Tina
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- July 17, 2013 at 12:11 pm
I think the encouraging posts are definitely as important! Best of luck to you in the swimming competition, though I am sure just being ABLE to compete is a blessing!
Hoping for an easy time of it for you with the upcoming surgery, I am sure you will keep us posted on how you are doing. Thank you for sharing the encouragement this morning!!
Tina
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- July 17, 2013 at 12:11 pm
I think the encouraging posts are definitely as important! Best of luck to you in the swimming competition, though I am sure just being ABLE to compete is a blessing!
Hoping for an easy time of it for you with the upcoming surgery, I am sure you will keep us posted on how you are doing. Thank you for sharing the encouragement this morning!!
Tina
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- July 17, 2013 at 4:21 pm
Frank,I love hearing you are doing so well! Best of luck, I’m sure you will splash those other geezers right out of the water.
I think we had SRS around the same time – can you tell me how big your troublesome met has gotten? How do they know its hematoma vs edema vs growth? That is what I am struggling with here at Vanderbilt.
I feel fine, but the 2 that were SRSd in Nov continue to enlarge which they are telling me is radiation effects/edema. The whole thing makes me nervous. It’s my brain we’re talking about!!
Just trying to enjoy everyday and put it all at God’s feet. So glad all is going so well for you – keep me up to date on the surgery date!
Amy
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- July 17, 2013 at 4:21 pm
Frank,I love hearing you are doing so well! Best of luck, I’m sure you will splash those other geezers right out of the water.
I think we had SRS around the same time – can you tell me how big your troublesome met has gotten? How do they know its hematoma vs edema vs growth? That is what I am struggling with here at Vanderbilt.
I feel fine, but the 2 that were SRSd in Nov continue to enlarge which they are telling me is radiation effects/edema. The whole thing makes me nervous. It’s my brain we’re talking about!!
Just trying to enjoy everyday and put it all at God’s feet. So glad all is going so well for you – keep me up to date on the surgery date!
Amy
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- July 17, 2013 at 4:21 pm
Frank,I love hearing you are doing so well! Best of luck, I’m sure you will splash those other geezers right out of the water.
I think we had SRS around the same time – can you tell me how big your troublesome met has gotten? How do they know its hematoma vs edema vs growth? That is what I am struggling with here at Vanderbilt.
I feel fine, but the 2 that were SRSd in Nov continue to enlarge which they are telling me is radiation effects/edema. The whole thing makes me nervous. It’s my brain we’re talking about!!
Just trying to enjoy everyday and put it all at God’s feet. So glad all is going so well for you – keep me up to date on the surgery date!
Amy
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- July 17, 2013 at 7:15 pm
The "residue" of one of the two tumors that were SRSed is now more than twice as large as the tumor itself was back in December. I wish I could tell you why the docs are so sure that it is not cancer but hematoma of the leftovers. What shows up on the PET scan plays a part in their determination. In fact, before any future surgery, I will be having a brain PET a week from Monday, which should confirm their determination even further. Not quite sure what other information that will provide the surgeon. Essential for him that he have the results of this further scan. So this will be a means of even definitive determination of the no cancer judgment, but I am sure they would not have been saying "no cancer" already if the analysis of the previous brain MRIs had not given them the basis on which to do so. My clinical (medical) oncologist admits himself that he is dependent on radiation oncologists to make this determination based on their careful read of the brain MRIs. He could not do it himself unaided. So it must not be an easy call in all cases.
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- July 17, 2013 at 9:40 pm
Hmmm, very interesting Frank.. I Always have brain MRIs, and have only had one PET this year. I got them more often, every 3 mos or so, after my bone met 2 yrs ago), but for me I end up w so many false positives we waste time chasing down little nothings after every PET, and also no recurrence in the bones in 2 yrs. will ask abt that.Amy
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- July 18, 2013 at 1:30 am
Congratulations, and you are absolutely right that positive posts are very much needed
and appreciated here. Sometimes, my mood correlates almost directly to the posts I read. 🙂
I am aware that this is not always helpful, but it keeps me engaged in the journey! I have been
happy that my husband is doing well, but I dont want to get complacent. Thanks,
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- July 18, 2013 at 1:30 am
Congratulations, and you are absolutely right that positive posts are very much needed
and appreciated here. Sometimes, my mood correlates almost directly to the posts I read. 🙂
I am aware that this is not always helpful, but it keeps me engaged in the journey! I have been
happy that my husband is doing well, but I dont want to get complacent. Thanks,
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- July 18, 2013 at 1:30 am
Congratulations, and you are absolutely right that positive posts are very much needed
and appreciated here. Sometimes, my mood correlates almost directly to the posts I read. 🙂
I am aware that this is not always helpful, but it keeps me engaged in the journey! I have been
happy that my husband is doing well, but I dont want to get complacent. Thanks,
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- July 28, 2013 at 3:33 am
Congratulations on competing in the National Senior Games! Good for you! Your spirit and optimism are very inspiring.
I can understand your frustration and disappointment wth your insurance company. Aarrgh! However, if you really need a PET scan to determine if you do or do not need surgery, you probably should not delay getting the scan. If you can possibly swing the $5K perhaps you should pay out of pocket and fight for reimbursement later.
I hope all goes well for you in the next week.
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- July 30, 2013 at 7:12 pm
I ended up getting another full body PET yesterday, which the insurance company approved payment for. Still not clear whether that will suffice or whether the surgeon will still want a brain PET. Good news is that the PET continues to show no indication of cancer either in body or brain. Another post goes into some detail about my surprising new BRAF genetic findings. Some of you who have been around the Forum for awhile have read my speculation that my first occurrence of beyond Stage I melanoma came when I was 15 and was not repeated till I was 71. Long story. But my oncologist at least says "Possible." The discovery of the craziness of my latest genetic sequencing results makes me wonder about this even more.
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- July 30, 2013 at 7:12 pm
I ended up getting another full body PET yesterday, which the insurance company approved payment for. Still not clear whether that will suffice or whether the surgeon will still want a brain PET. Good news is that the PET continues to show no indication of cancer either in body or brain. Another post goes into some detail about my surprising new BRAF genetic findings. Some of you who have been around the Forum for awhile have read my speculation that my first occurrence of beyond Stage I melanoma came when I was 15 and was not repeated till I was 71. Long story. But my oncologist at least says "Possible." The discovery of the craziness of my latest genetic sequencing results makes me wonder about this even more.
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- July 30, 2013 at 7:12 pm
I ended up getting another full body PET yesterday, which the insurance company approved payment for. Still not clear whether that will suffice or whether the surgeon will still want a brain PET. Good news is that the PET continues to show no indication of cancer either in body or brain. Another post goes into some detail about my surprising new BRAF genetic findings. Some of you who have been around the Forum for awhile have read my speculation that my first occurrence of beyond Stage I melanoma came when I was 15 and was not repeated till I was 71. Long story. But my oncologist at least says "Possible." The discovery of the craziness of my latest genetic sequencing results makes me wonder about this even more.
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- July 17, 2013 at 7:15 pm
The "residue" of one of the two tumors that were SRSed is now more than twice as large as the tumor itself was back in December. I wish I could tell you why the docs are so sure that it is not cancer but hematoma of the leftovers. What shows up on the PET scan plays a part in their determination. In fact, before any future surgery, I will be having a brain PET a week from Monday, which should confirm their determination even further. Not quite sure what other information that will provide the surgeon. Essential for him that he have the results of this further scan. So this will be a means of even definitive determination of the no cancer judgment, but I am sure they would not have been saying "no cancer" already if the analysis of the previous brain MRIs had not given them the basis on which to do so. My clinical (medical) oncologist admits himself that he is dependent on radiation oncologists to make this determination based on their careful read of the brain MRIs. He could not do it himself unaided. So it must not be an easy call in all cases.
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- July 17, 2013 at 7:15 pm
The "residue" of one of the two tumors that were SRSed is now more than twice as large as the tumor itself was back in December. I wish I could tell you why the docs are so sure that it is not cancer but hematoma of the leftovers. What shows up on the PET scan plays a part in their determination. In fact, before any future surgery, I will be having a brain PET a week from Monday, which should confirm their determination even further. Not quite sure what other information that will provide the surgeon. Essential for him that he have the results of this further scan. So this will be a means of even definitive determination of the no cancer judgment, but I am sure they would not have been saying "no cancer" already if the analysis of the previous brain MRIs had not given them the basis on which to do so. My clinical (medical) oncologist admits himself that he is dependent on radiation oncologists to make this determination based on their careful read of the brain MRIs. He could not do it himself unaided. So it must not be an easy call in all cases.
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- July 17, 2013 at 9:40 pm
Hmmm, very interesting Frank.. I Always have brain MRIs, and have only had one PET this year. I got them more often, every 3 mos or so, after my bone met 2 yrs ago), but for me I end up w so many false positives we waste time chasing down little nothings after every PET, and also no recurrence in the bones in 2 yrs. will ask abt that.Amy
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- July 17, 2013 at 9:40 pm
Hmmm, very interesting Frank.. I Always have brain MRIs, and have only had one PET this year. I got them more often, every 3 mos or so, after my bone met 2 yrs ago), but for me I end up w so many false positives we waste time chasing down little nothings after every PET, and also no recurrence in the bones in 2 yrs. will ask abt that.Amy
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- July 27, 2013 at 5:55 pm
Swimming in National Senior Games went well but lots slower than the last Games in 2011. Came home to a problem. No prior authorization was obtained or probably obtainable for the brain PET scan that the neurosurgeon wanted done before a decision was made about the brain surgery, and the scan, scheduled for Monday, will cost me 5 k out of pocket. Never talked to neurosurgeon about why it was so important to have a brain PET and apparently none are paid for by insurance. Of course, I find out late Friday afternoon with test scheduled 100 miles away first thing Monday morning. And who calls back on weekends? Good bye 5 k I guess!!??
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- July 27, 2013 at 5:55 pm
Swimming in National Senior Games went well but lots slower than the last Games in 2011. Came home to a problem. No prior authorization was obtained or probably obtainable for the brain PET scan that the neurosurgeon wanted done before a decision was made about the brain surgery, and the scan, scheduled for Monday, will cost me 5 k out of pocket. Never talked to neurosurgeon about why it was so important to have a brain PET and apparently none are paid for by insurance. Of course, I find out late Friday afternoon with test scheduled 100 miles away first thing Monday morning. And who calls back on weekends? Good bye 5 k I guess!!??
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- July 27, 2013 at 5:55 pm
Swimming in National Senior Games went well but lots slower than the last Games in 2011. Came home to a problem. No prior authorization was obtained or probably obtainable for the brain PET scan that the neurosurgeon wanted done before a decision was made about the brain surgery, and the scan, scheduled for Monday, will cost me 5 k out of pocket. Never talked to neurosurgeon about why it was so important to have a brain PET and apparently none are paid for by insurance. Of course, I find out late Friday afternoon with test scheduled 100 miles away first thing Monday morning. And who calls back on weekends? Good bye 5 k I guess!!??
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- July 28, 2013 at 3:33 am
Congratulations on competing in the National Senior Games! Good for you! Your spirit and optimism are very inspiring.
I can understand your frustration and disappointment wth your insurance company. Aarrgh! However, if you really need a PET scan to determine if you do or do not need surgery, you probably should not delay getting the scan. If you can possibly swing the $5K perhaps you should pay out of pocket and fight for reimbursement later.
I hope all goes well for you in the next week.
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- July 28, 2013 at 3:33 am
Congratulations on competing in the National Senior Games! Good for you! Your spirit and optimism are very inspiring.
I can understand your frustration and disappointment wth your insurance company. Aarrgh! However, if you really need a PET scan to determine if you do or do not need surgery, you probably should not delay getting the scan. If you can possibly swing the $5K perhaps you should pay out of pocket and fight for reimbursement later.
I hope all goes well for you in the next week.
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