HBOT due to Radiation Necrosis on Optic Chiasm

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Comments

  • KMPonder
    KMPonder Member Posts: 102
    #22
    Rory1987 said:

    One question?
    Will HBOT or The pure oxygen feed tumor or cancer cells?

    Rory,
    We have done 15 HBOT
    Rory,

    We have done 15 HBOT treatments. Hubby just had a 2nd lumbar puncture in a week, as the first results came back negative to tumor markers, but his protein was high and his glucose low. Duke is stumped. They did another yesteray but say to keep him on HBOT.

    We were told that HBOT is the WRONG treatment if this is a tumor, and here we've done 15 of them. Comforting, eh? We are still hopeful it's just necrosis, and the vision has some chance at restoration.

    If this second lumbar still comes back inconclusive to being a tumor, then the only option is biopsy of the optic chiasm. Most surgeons won't touch this area, so we are thinking it would be unwise to do, yet that leaves us unsure as to a diagnosis. What a quandary?!
  • Rory1987
    Rory1987 Member Posts: 120
    #23
    KMPonder said:

    Rory,
    We have done 15 HBOT
    Rory,

    We have done 15 HBOT treatments. Hubby just had a 2nd lumbar puncture in a week, as the first results came back negative to tumor markers, but his protein was high and his glucose low. Duke is stumped. They did another yesteray but say to keep him on HBOT.

    We were told that HBOT is the WRONG treatment if this is a tumor, and here we've done 15 of them. Comforting, eh? We are still hopeful it's just necrosis, and the vision has some chance at restoration.

    If this second lumbar still comes back inconclusive to being a tumor, then the only option is biopsy of the optic chiasm. Most surgeons won't touch this area, so we are thinking it would be unwise to do, yet that leaves us unsure as to a diagnosis. What a quandary?!

    I got a little bit confused
    I got a little bit confused about oxygen and cancer cells. Because before I posted that question I've read an article about some Doctor's speech that they used antiangiogenesis drugs to inhibit blood vessel growth on tumors, so if they inhibit blood vessel growth then there would be no blood and oxygen supply to feed the tumor. So I got a bit confused on this issue
  • gdpawel
    gdpawel Member Posts: 523 Member
    #24
    Rory1987 said:

    I got a little bit confused
    I got a little bit confused about oxygen and cancer cells. Because before I posted that question I've read an article about some Doctor's speech that they used antiangiogenesis drugs to inhibit blood vessel growth on tumors, so if they inhibit blood vessel growth then there would be no blood and oxygen supply to feed the tumor. So I got a bit confused on this issue

    HBOT oxygen
    With HBOT, wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. HBOT provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. HBOT leads to the growth of new blood vessels (re-vascularization), but not the blood vessels feeding a tumor. Tumors create their own supply lines by secreting substances that stimulate the formation of new blood vessels. HBOT deals with necrotic tissue in the brain, not a brain tumor.

    HBOT raises the tissue p02 (partial pressure of oxygen), creating a steep oxygen gradient (how effectively oxygen is being transferred from lungs to the blood), which initiates cellular and vascular repair mechanisms. Technically, HBOT results in the delivery of oxygen of tensions (concentration of oxygen) of 1,500 to 2,200 mm Hg to the arterioles (small artieries). At such high tensions, oxygen diffuses greater distances and reverses ischemia (insufficient supply of blood to an organ). The wounds become reorganized, and collagen (building block of connective tissues) is synthesized. Osteoclastic (large cells with more than one nucleus) acitivity is also stimulated by elevated oxyten tensions.

    I tell people to think of it like vasaline petroleum jelly on very chapped hands. Within hours, it soothes and within days it heals (revascularizies cells and tissues).
  • KMPonder
    KMPonder Member Posts: 102
    #25
    gdpawel said:

    HBOT oxygen
    With HBOT, wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. HBOT provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. HBOT leads to the growth of new blood vessels (re-vascularization), but not the blood vessels feeding a tumor. Tumors create their own supply lines by secreting substances that stimulate the formation of new blood vessels. HBOT deals with necrotic tissue in the brain, not a brain tumor.

    HBOT raises the tissue p02 (partial pressure of oxygen), creating a steep oxygen gradient (how effectively oxygen is being transferred from lungs to the blood), which initiates cellular and vascular repair mechanisms. Technically, HBOT results in the delivery of oxygen of tensions (concentration of oxygen) of 1,500 to 2,200 mm Hg to the arterioles (small artieries). At such high tensions, oxygen diffuses greater distances and reverses ischemia (insufficient supply of blood to an organ). The wounds become reorganized, and collagen (building block of connective tissues) is synthesized. Osteoclastic (large cells with more than one nucleus) acitivity is also stimulated by elevated oxyten tensions.

    I tell people to think of it like vasaline petroleum jelly on very chapped hands. Within hours, it soothes and within days it heals (revascularizies cells and tissues).

    We were told 30-60 days of
    We were told 30-60 days of HBOT should show improvement IF it was necrosis and going to make a difference. We are starting day 17 today. As you know without biopsy for us, they are not sure if it's necrosis or tumor. Do you think if this is necrosis, we should have seen some improvement in vision at this point? The optic chiasm looks like a big puffy x where the optic nerves come together. We see the Neuro Surgeon Wednesday. I'm on pins and needles and just wish some professional would be able to know without another biopsy. Hubby's not sure he's going to do it. This would be his third, and this area is extremely tricky to biopsy, so we've been told.
  • Rory1987
    Rory1987 Member Posts: 120
    #26
    KMPonder said:

    We were told 30-60 days of
    We were told 30-60 days of HBOT should show improvement IF it was necrosis and going to make a difference. We are starting day 17 today. As you know without biopsy for us, they are not sure if it's necrosis or tumor. Do you think if this is necrosis, we should have seen some improvement in vision at this point? The optic chiasm looks like a big puffy x where the optic nerves come together. We see the Neuro Surgeon Wednesday. I'm on pins and needles and just wish some professional would be able to know without another biopsy. Hubby's not sure he's going to do it. This would be his third, and this area is extremely tricky to biopsy, so we've been told.

    Lag Phase
    Maybe your husband is still in the "lag phase" of his treatment? It may take a few "dives" for healing to take place. Hope everything goes well with your hubby. Will pray for the success of your hubby's HBOT.
  • KMPonder
    KMPonder Member Posts: 102
    #27
    Rory1987 said:

    Lag Phase
    Maybe your husband is still in the "lag phase" of his treatment? It may take a few "dives" for healing to take place. Hope everything goes well with your hubby. Will pray for the success of your hubby's HBOT.

    Craniotomy
    Well, we saw the Neuro Surgeon today. He really has no option but to do the biopsy. They are doing a craniotomy Thursday morning. Time is crucial, and we need a real diagnosis. For now the HBOT is over until we know what we are dealing with. We are just praying it's not a tumor, as hubby's had germinoma in 1986 and AAs in 2009. If this is a third type of brain tumor in my husband's life, I'd be floored! I've just never heard of such. My fear is the AAs have decided to invade this area, but it so close to where the germinoma was in 1986. Whatever it is, we pray that it will be the thing that can be most easily cured and will give him a chance of restoring his vision. They're going to take tissue from the right optice nerve area, so we may be forfeiting right vision for sure. We choose to trust God's hand will guide the surgeon's hands, and all will be well again. I will update next week, once we get him home and settled.
  • Rory1987
    Rory1987 Member Posts: 120
    #28
    KMPonder said:

    Craniotomy
    Well, we saw the Neuro Surgeon today. He really has no option but to do the biopsy. They are doing a craniotomy Thursday morning. Time is crucial, and we need a real diagnosis. For now the HBOT is over until we know what we are dealing with. We are just praying it's not a tumor, as hubby's had germinoma in 1986 and AAs in 2009. If this is a third type of brain tumor in my husband's life, I'd be floored! I've just never heard of such. My fear is the AAs have decided to invade this area, but it so close to where the germinoma was in 1986. Whatever it is, we pray that it will be the thing that can be most easily cured and will give him a chance of restoring his vision. They're going to take tissue from the right optice nerve area, so we may be forfeiting right vision for sure. We choose to trust God's hand will guide the surgeon's hands, and all will be well again. I will update next week, once we get him home and settled.

    AA
    Let's just pray that it is not AA. I've read of an AA survivor who's had AA since he was 11 years old and he is still alive today. He has undergone 11 recurrences and countless therapies.

    you can read his story here:

    http://www.virtualtrials.com/survivegeorge.cfm
  • tommybear
    tommybear Member Posts: 111 Member
    #29
    KMPonder said:

    Craniotomy
    Well, we saw the Neuro Surgeon today. He really has no option but to do the biopsy. They are doing a craniotomy Thursday morning. Time is crucial, and we need a real diagnosis. For now the HBOT is over until we know what we are dealing with. We are just praying it's not a tumor, as hubby's had germinoma in 1986 and AAs in 2009. If this is a third type of brain tumor in my husband's life, I'd be floored! I've just never heard of such. My fear is the AAs have decided to invade this area, but it so close to where the germinoma was in 1986. Whatever it is, we pray that it will be the thing that can be most easily cured and will give him a chance of restoring his vision. They're going to take tissue from the right optice nerve area, so we may be forfeiting right vision for sure. We choose to trust God's hand will guide the surgeon's hands, and all will be well again. I will update next week, once we get him home and settled.

    Hello there....
    Just wanted to say that I hope things go well for your husband and you. Thinking about you. Take care.

    Michele S.
  • Rory1987
    Rory1987 Member Posts: 120
    #30
    gdpawel said:

    HBOT oxygen
    With HBOT, wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. HBOT provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. HBOT leads to the growth of new blood vessels (re-vascularization), but not the blood vessels feeding a tumor. Tumors create their own supply lines by secreting substances that stimulate the formation of new blood vessels. HBOT deals with necrotic tissue in the brain, not a brain tumor.

    HBOT raises the tissue p02 (partial pressure of oxygen), creating a steep oxygen gradient (how effectively oxygen is being transferred from lungs to the blood), which initiates cellular and vascular repair mechanisms. Technically, HBOT results in the delivery of oxygen of tensions (concentration of oxygen) of 1,500 to 2,200 mm Hg to the arterioles (small artieries). At such high tensions, oxygen diffuses greater distances and reverses ischemia (insufficient supply of blood to an organ). The wounds become reorganized, and collagen (building block of connective tissues) is synthesized. Osteoclastic (large cells with more than one nucleus) acitivity is also stimulated by elevated oxyten tensions.

    I tell people to think of it like vasaline petroleum jelly on very chapped hands. Within hours, it soothes and within days it heals (revascularizies cells and tissues).

    Thank you!!
    Thank you for clearing things up Mr. Greg

    will HBOT alone work to treat brain necrosis or do we need the help of avastin while having HBOT???
  • Rory1987
    Rory1987 Member Posts: 120
    #31
    gdpawel said:

    HBOT oxygen
    With HBOT, wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. HBOT provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. HBOT leads to the growth of new blood vessels (re-vascularization), but not the blood vessels feeding a tumor. Tumors create their own supply lines by secreting substances that stimulate the formation of new blood vessels. HBOT deals with necrotic tissue in the brain, not a brain tumor.

    HBOT raises the tissue p02 (partial pressure of oxygen), creating a steep oxygen gradient (how effectively oxygen is being transferred from lungs to the blood), which initiates cellular and vascular repair mechanisms. Technically, HBOT results in the delivery of oxygen of tensions (concentration of oxygen) of 1,500 to 2,200 mm Hg to the arterioles (small artieries). At such high tensions, oxygen diffuses greater distances and reverses ischemia (insufficient supply of blood to an organ). The wounds become reorganized, and collagen (building block of connective tissues) is synthesized. Osteoclastic (large cells with more than one nucleus) acitivity is also stimulated by elevated oxyten tensions.

    I tell people to think of it like vasaline petroleum jelly on very chapped hands. Within hours, it soothes and within days it heals (revascularizies cells and tissues).

    questions
    questions:

    Does age and radiation dose affect the chances of developing radiation necrosis or does necrosis occur to everyone who had radiation to the brain? I had WBRT (30gy in 12fractions and a 30gy boost to the tumor site in 15fractions). I've read an article about the radionecrosis and it occurs in patients receiving more than 60gy (i don't know if it's WBR or focal radiosurgery) but those receiving 55-60gy has an increased 5% risk of developing radionecrosis.

    I've even read that it diffuse white matter injury is seen in almost all patients receiving more than 55gy. I wonder if the article meant 55gy of WBR

    Does HBOT work for all 3 types of Late Delayed side-effects?
  • KMPonder
    KMPonder Member Posts: 102
    #32
    Rory1987 said:

    AA
    Let's just pray that it is not AA. I've read of an AA survivor who's had AA since he was 11 years old and he is still alive today. He has undergone 11 recurrences and countless therapies.

    you can read his story here:

    http://www.virtualtrials.com/survivegeorge.cfm

    I think you know by now it's
    I think you know by now it's a GBM. I think I posted that elsewhere. They say this was caused by his WBR in 1987. Duke's Brain Tumor Center has never seen a GBM on the optic chiasm in an adult patient. I hate we are the first. Two PETs did not reveal it. It took the craniotomy and tissue sample. He starts Etoposide, along with Rapamun Friday.

    I do not know how many grays he had with his 1987 radiation. He was 21 at the time, and I don't have those records. Duke did get them from Emory at the time we went to Duke in '09 for the AAs. The AAs by the way still look good from his Temodar and radiation of '09/'10. Now we've got the monster GBM to fight. Hubby's blind, and all light perception prior to the surgery is now gone. He remains positive and hopeful, as will I, that we can still beat this bad boy.
  • palmyrafan
    palmyrafan Member Posts: 396
    #33
    KMPonder said:

    We are in a quandary.
    We are in a quandary. Yesterday my husband was deemed legally blind. This has happened in a matter of weeks. They decided to do a lumbar puncture today, because the PET is still showing NO hypermetabolic activity, yet the nuero-ophthalmologist thinks this is tumor and not necrosis. Now the Duke neuro-onc is really puzzled by his quick blindness. If the spinal tap cannot give any definitive answers, they say there is the consideration of doing a biopsy (if we can find a neuro surgeon willing) of the right aspect of the optic chiasm. We think it's too risky and doubt we'd do it. Until they know more, we are going to continue on the HBOT next week but if we have a tumor, we certainly don't need to fuel it oxygen.

    They're even discussing having him do Avastin while on the HBOT, but they've never seen it done.

    My hubby having had WBR in 1987, living tumor free until 2009 and diagnosed with radiation-induced tumors, ends up blind 12 months post focal radiation is just all too disconcerting. I'm trying to wrap my head around it all, because the three AA tumors are nothing but scar tissue. I've seen the scans of the optic chiasm, though, and something is sorely amiss there. What should look stringy, strandy if you will is puffed up in a big way, but they cannot discern tumor or necrosis. I think we've stumped some of the best at Duke, but I feel time is critical. I am thinking we may need a trip to MD Anderson or Johns Hopkins, but I know Duke is one of the best.

    Any thoughts?

    Rory,

    Avastin was more than $10,000 per treatment for my husband. Thankfully, he has amazing health insurance that covered it all. I wish there were some better options for you. It's frustrating, I'm sure.

    Optic Nerve Chiasm
    I would see an Optic Nerve Neuro-Opthalmalogist. I was diagnosed in 1994 with brain tumors that were wrapped around my left optic nerve, carotid artery, and skull base. They were massive. That same year I underwent an 18 hour surgery to remove what they could In 1996 I had radiation therapy. I "maxed out" on radiation therapy at my optic nerve.

    The tumors are back; again at my left optic nerve (buried in tumor so they say) and are now at my Optic Nerve Chiasm. The radiation oncologist says no more radiation at my optic nerve or optic chiasm. We have an appointment with a Neuro-Opthalmalogist (Dr. Robert Sergott at Thomas Jefferson University Hospital in Philadelphia). He is an expert of Optic Nerve Tumors and Optic Nerve Chiasm Tumors. He has indicated that he thinks we can access the tumors from inside the sinuses by going under the sinuses and taking them out that way.

    I know that both MD Anderson and John's Hopkin's have Optic Nerve Centers and some of the most highly rated doctors at each (2010 Highly Rated Doctor's Guide). I would suggest it bears a 2nd and or 3rd opinion especially if there is a way of even preserving what eyesight he has left.

    Good luck.
  • KMPonder
    KMPonder Member Posts: 102
    #34
    palmyrafan said:

    Optic Nerve Chiasm
    I would see an Optic Nerve Neuro-Opthalmalogist. I was diagnosed in 1994 with brain tumors that were wrapped around my left optic nerve, carotid artery, and skull base. They were massive. That same year I underwent an 18 hour surgery to remove what they could In 1996 I had radiation therapy. I "maxed out" on radiation therapy at my optic nerve.

    The tumors are back; again at my left optic nerve (buried in tumor so they say) and are now at my Optic Nerve Chiasm. The radiation oncologist says no more radiation at my optic nerve or optic chiasm. We have an appointment with a Neuro-Opthalmalogist (Dr. Robert Sergott at Thomas Jefferson University Hospital in Philadelphia). He is an expert of Optic Nerve Tumors and Optic Nerve Chiasm Tumors. He has indicated that he thinks we can access the tumors from inside the sinuses by going under the sinuses and taking them out that way.

    I know that both MD Anderson and John's Hopkin's have Optic Nerve Centers and some of the most highly rated doctors at each (2010 Highly Rated Doctor's Guide). I would suggest it bears a 2nd and or 3rd opinion especially if there is a way of even preserving what eyesight he has left.

    Good luck.

    Hi Palmy.
    I'm so sorry to
    Hi Palmy.

    I'm so sorry to hear your news. Was your tumor considered an Optic Nerve Glioma?

    Unfortunately, my husband is now completely blind. They did a craniotomy just over three weeks ago, and the pathology determined it is a GBM, not an optic nerve glioma, which is what I think you typically find in this area. He had some light perception prior to the surgery, but now he's got the double whammy of blindness and a GBM.

    I will definitely see what I can research at MDA and JH, but my husband is being treated by the Duke brain tumor center, which has provided excellent care. They had actually not seen an adult case of GBM on the optic chiasm. Sounds like there are other specialists who have. When I try to research info on GBMs on the optic chiasm, there's just not much info there. He had two PET scans and neither showed this was a GBM. Isn't that scary?!

    I wish you successful treatment and would love for you to let me know what they are going to do for you.

    Kim
  • palmyrafan
    palmyrafan Member Posts: 396
    #35
    KMPonder said:

    Hi Palmy.
    I'm so sorry to
    Hi Palmy.

    I'm so sorry to hear your news. Was your tumor considered an Optic Nerve Glioma?

    Unfortunately, my husband is now completely blind. They did a craniotomy just over three weeks ago, and the pathology determined it is a GBM, not an optic nerve glioma, which is what I think you typically find in this area. He had some light perception prior to the surgery, but now he's got the double whammy of blindness and a GBM.

    I will definitely see what I can research at MDA and JH, but my husband is being treated by the Duke brain tumor center, which has provided excellent care. They had actually not seen an adult case of GBM on the optic chiasm. Sounds like there are other specialists who have. When I try to research info on GBMs on the optic chiasm, there's just not much info there. He had two PET scans and neither showed this was a GBM. Isn't that scary?!

    I wish you successful treatment and would love for you to let me know what they are going to do for you.

    Kim

    Optic Nerve Chiasm
    I am so sorry to hear about the latest news with your husband.

    My tumors are actually meningiomas which is crazy because they work by compression not invasion and yet that is what they have done. Invaded everything. The "good" news about my tumors is that they are slow growing. Typcial meningiomas take about 20 years to start showing any symptoms. The iffy thing we were told is that radiation could do one of 2 things. It could slow or stop the growth of the tumors or they could cause the tumors to rapidly increase in size and speed.

    The radiation I had did buy me 15 years but it did nothing to stop the growth of the tumors in the exact same locations they were in 17 years ago. Luckily, I have no growth in any new areas of the brain with the exception of the optic nerve chiasm. And even then, the doctors (who have obviously known about this but didn't tell me) say that there has been no growth or movement in 2 years.

    We are considering a wait-and-see with the optic nerve chiasm. Hate to risk losing my vision (60%) with radiation especially if there is new technology available next year or in the next 5 that could totally take care of it with low risk of losing vision.

    I'm glad to hear that your husband is at Duke. When we lived in Charlotte 10 years ago that is where I went. They are very good.

    I will keep you posted as to what develops and please keep me posted as to your husband's treatment as well.

    Teresa
  • palmyrafan
    palmyrafan Member Posts: 396
    #36
    KMPonder said:

    Hi Palmy.
    I'm so sorry to
    Hi Palmy.

    I'm so sorry to hear your news. Was your tumor considered an Optic Nerve Glioma?

    Unfortunately, my husband is now completely blind. They did a craniotomy just over three weeks ago, and the pathology determined it is a GBM, not an optic nerve glioma, which is what I think you typically find in this area. He had some light perception prior to the surgery, but now he's got the double whammy of blindness and a GBM.

    I will definitely see what I can research at MDA and JH, but my husband is being treated by the Duke brain tumor center, which has provided excellent care. They had actually not seen an adult case of GBM on the optic chiasm. Sounds like there are other specialists who have. When I try to research info on GBMs on the optic chiasm, there's just not much info there. He had two PET scans and neither showed this was a GBM. Isn't that scary?!

    I wish you successful treatment and would love for you to let me know what they are going to do for you.

    Kim

    Optic Nerve Chiasm
    I am so sorry to hear about the latest news with your husband.

    My tumors are actually meningiomas which is crazy because they work by compression not invasion and yet that is what they have done. Invaded everything. The "good" news about my tumors is that they are slow growing. Typcial meningiomas take about 20 years to start showing any symptoms. The iffy thing we were told is that radiation could do one of 2 things. It could slow or stop the growth of the tumors or they could cause the tumors to rapidly increase in size and speed.

    The radiation I had did buy me 15 years but it did nothing to stop the growth of the tumors in the exact same locations they were in 17 years ago. Luckily, I have no growth in any new areas of the brain with the exception of the optic nerve chiasm. And even then, the doctors (who have obviously known about this but didn't tell me) say that there has been no growth or movement in 2 years.

    We are considering a wait-and-see with the optic nerve chiasm. Hate to risk losing my vision (60%) with radiation especially if there is new technology available next year or in the next 5 that could totally take care of it with low risk of losing vision.

    I'm glad to hear that your husband is at Duke. When we lived in Charlotte 10 years ago that is where I went. They are very good.

    I will keep you posted as to what develops and please keep me posted as to your husband's treatment as well.

    Teresa
  • palmyrafan
    palmyrafan Member Posts: 396
    #37
    KMPonder said:

    Hi Palmy.
    I'm so sorry to
    Hi Palmy.

    I'm so sorry to hear your news. Was your tumor considered an Optic Nerve Glioma?

    Unfortunately, my husband is now completely blind. They did a craniotomy just over three weeks ago, and the pathology determined it is a GBM, not an optic nerve glioma, which is what I think you typically find in this area. He had some light perception prior to the surgery, but now he's got the double whammy of blindness and a GBM.

    I will definitely see what I can research at MDA and JH, but my husband is being treated by the Duke brain tumor center, which has provided excellent care. They had actually not seen an adult case of GBM on the optic chiasm. Sounds like there are other specialists who have. When I try to research info on GBMs on the optic chiasm, there's just not much info there. He had two PET scans and neither showed this was a GBM. Isn't that scary?!

    I wish you successful treatment and would love for you to let me know what they are going to do for you.

    Kim

    Optic Nerve Chiasm
    I am so sorry to hear about the latest news with your husband.

    My tumors are actually meningiomas which is crazy because they work by compression not invasion and yet that is what they have done. Invaded everything. The "good" news about my tumors is that they are slow growing. Typcial meningiomas take about 20 years to start showing any symptoms. The iffy thing we were told is that radiation could do one of 2 things. It could slow or stop the growth of the tumors or they could cause the tumors to rapidly increase in size and speed.

    The radiation I had did buy me 15 years but it did nothing to stop the growth of the tumors in the exact same locations they were in 17 years ago. Luckily, I have no growth in any new areas of the brain with the exception of the optic nerve chiasm. And even then, the doctors (who have obviously known about this but didn't tell me) say that there has been no growth or movement in 2 years.

    We are considering a wait-and-see with the optic nerve chiasm. Hate to risk losing my vision (60%) with radiation especially if there is new technology available next year or in the next 5 that could totally take care of it with low risk of losing vision.

    I'm glad to hear that your husband is at Duke. When we lived in Charlotte 10 years ago that is where I went. They are very good.

    I will keep you posted as to what develops and please keep me posted as to your husband's treatment as well.

    Teresa
  • KMPonder
    KMPonder Member Posts: 102
    #38
    palmyrafan said:

    Optic Nerve Chiasm
    I am so sorry to hear about the latest news with your husband.

    My tumors are actually meningiomas which is crazy because they work by compression not invasion and yet that is what they have done. Invaded everything. The "good" news about my tumors is that they are slow growing. Typcial meningiomas take about 20 years to start showing any symptoms. The iffy thing we were told is that radiation could do one of 2 things. It could slow or stop the growth of the tumors or they could cause the tumors to rapidly increase in size and speed.

    The radiation I had did buy me 15 years but it did nothing to stop the growth of the tumors in the exact same locations they were in 17 years ago. Luckily, I have no growth in any new areas of the brain with the exception of the optic nerve chiasm. And even then, the doctors (who have obviously known about this but didn't tell me) say that there has been no growth or movement in 2 years.

    We are considering a wait-and-see with the optic nerve chiasm. Hate to risk losing my vision (60%) with radiation especially if there is new technology available next year or in the next 5 that could totally take care of it with low risk of losing vision.

    I'm glad to hear that your husband is at Duke. When we lived in Charlotte 10 years ago that is where I went. They are very good.

    I will keep you posted as to what develops and please keep me posted as to your husband's treatment as well.

    Teresa

    Hi Teresa.
    Every tumor type
    Hi Teresa.

    Every tumor type is so unique in the way it grows and how it affects the brain. I am thankful yours are slow-growing. In your situation, I'd do the same and try and see what technology will happen in the next year or so. Major strides have been made since you and my husband first started dealing with your tumors.

    Hubby is on oral Etoposide (21 days on/7 off) and oral Rapamune once weekly. So far, no sickness, just fatigue. He's tolerating that well, as he's home from work. We'll likely be retiring him soon.

    Duke has been great, even now managing us here in Georgia. December was the last time we could get up there, but I am hopeful we could make the Angels Among us walk again this year at the end of April. We talked about it briefly this morning.

    Interestingly, just yesterday and this morning, hubby walked by the kitchen where the morning windows shine the brightest sun in our otherwise dark house, and he thought he saw some light - no clarity mind you - but it gave me some hope that the swelling is going down from the craniotomy or the chemo is working. :)

    I'll never give up hope.

    Kim

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