HBOT due to Radiation Necrosis on Optic Chiasm

KMPonder
KMPonder Member Posts: 102
edited March 2014 in Brain Cancer #1
I wanted to just let you know that my husband had his first "dive" today with Hyperbaric Oxygen Therapy. I've posted before that he's sustained vision loss, pretty substantially, due to radiation necrosis. It's on the optic chiasm, and we are hopeful we are going to see some very positive results and ideally a full restoration of his sight.

Since this was an area of which I knew nothing, I'll make some updates here as he goes through treatment. Feel free to ask any questions. I'm by no means an expert, but I'm learning. He'll be going five times a week for several weeks. His "dive" is two hours each day. He did well, and the technician was pleased that he was such a great patient.

I've read as many as 1 in 5 patients may have some form of radiation necrosis (I hope this is not true), so I hope that our story can have great results to encourage any of you along the way who may ever require this therapy. May you never!

If anyone else has had personal experience with HBOT, please discuss here. We'd love to know your story.

Kim
«1

Comments

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    thank you
    Hi, Kim.

    I've never heard of this treatment being used for radiation therapy side effects, or maybe I should say, damage done by radiation. Is it only used for damage done to eyesight, or is it supposed to help with other side effects from radiation, like maybe short term memory loss? I'm thinking that it is specifically for eyesight issues....but I don't know.

    It's great to hear that there's another option for your husband to try that could help further his recovery. So good to hear that it went well! Thank you for that update!

    Thank you very much, too, for thinking about others and being willing to share what you are learning. I am very grateful! I am always looking for new treatments and therapies.

    Blessings,
    Cindy
  • KMPonder
    KMPonder Member Posts: 102

    thank you
    Hi, Kim.

    I've never heard of this treatment being used for radiation therapy side effects, or maybe I should say, damage done by radiation. Is it only used for damage done to eyesight, or is it supposed to help with other side effects from radiation, like maybe short term memory loss? I'm thinking that it is specifically for eyesight issues....but I don't know.

    It's great to hear that there's another option for your husband to try that could help further his recovery. So good to hear that it went well! Thank you for that update!

    Thank you very much, too, for thinking about others and being willing to share what you are learning. I am very grateful! I am always looking for new treatments and therapies.

    Blessings,
    Cindy

    Hi Cindy.
    This treatment is

    Hi Cindy.

    This treatment is mainly used for healing wounds, such as diabetic wounds. It is my understanding that it works by causing new blood vessels to grow, thus healing dead tissue (necrosis), which could be a wound or what we find in the brain. Our Duke doctor had a patient who nearly became unable to swallow. She said after 30 treatments, he saw major improvement, and they did 20 more treatments. He's now back singing in the choir.

    I've not been able to find specific cases of it working for those with necrosis on the optic chiasm, but we remain hopeful.

    We hope before too long to have news that improvement's being seen and allowing all things to be seen again! :)
  • Rory1987
    Rory1987 Member Posts: 120
    KMPonder said:

    Hi Cindy.
    This treatment is

    Hi Cindy.

    This treatment is mainly used for healing wounds, such as diabetic wounds. It is my understanding that it works by causing new blood vessels to grow, thus healing dead tissue (necrosis), which could be a wound or what we find in the brain. Our Duke doctor had a patient who nearly became unable to swallow. She said after 30 treatments, he saw major improvement, and they did 20 more treatments. He's now back singing in the choir.

    I've not been able to find specific cases of it working for those with necrosis on the optic chiasm, but we remain hopeful.

    We hope before too long to have news that improvement's being seen and allowing all things to be seen again! :)

    Good Luck
    I've made an email inquiry to the nearest HBOT facility here in our region in the philippines and the doctor in charge said that HBOT is really used to treat brain radionecrosis but the sad news is that their hospital's HBOT unit got closed (maybe due to having less patients availing the treatment or a few have heard about the machine).

    Good luck to your husband's treatment Ms.KMPonder I hope your husband will get good results with the HBOT and I'll be praying for his treatment's success...
  • KMPonder
    KMPonder Member Posts: 102
    Rory1987 said:

    Good Luck
    I've made an email inquiry to the nearest HBOT facility here in our region in the philippines and the doctor in charge said that HBOT is really used to treat brain radionecrosis but the sad news is that their hospital's HBOT unit got closed (maybe due to having less patients availing the treatment or a few have heard about the machine).

    Good luck to your husband's treatment Ms.KMPonder I hope your husband will get good results with the HBOT and I'll be praying for his treatment's success...

    Just checking in. Hubby's
    Just checking in. Hubby's had 7 treatments of HBOT thus far. His eyes are no better. He'd tell you they seem worse. Interestingly, the technician says he hears others doing HBOT for other reasons report more blurred vision. That's certainly not what we needed.

    I know it takes several treatments (as in weeks, often, to see results), so we are trying to remain encouraged.

    No ill effects whatsoever from the treatment, and we are thankful for that.

    Hope everyone is doing well.
  • Rory1987
    Rory1987 Member Posts: 120
    KMPonder said:

    Just checking in. Hubby's
    Just checking in. Hubby's had 7 treatments of HBOT thus far. His eyes are no better. He'd tell you they seem worse. Interestingly, the technician says he hears others doing HBOT for other reasons report more blurred vision. That's certainly not what we needed.

    I know it takes several treatments (as in weeks, often, to see results), so we are trying to remain encouraged.

    No ill effects whatsoever from the treatment, and we are thankful for that.

    Hope everyone is doing well.

    The good thing is that your
    The good thing is that your husband's treatment is going fine and he's not experiencing ill-effects, maybe it is still too early for improvements to show up after all he is still in his 7th treatment session and healing takes time.

    I've even read this in some blog site where this person who was labeled as "legally-blind" had improved vision after receiving HBOT at a local wellness center after a couple of sessions and he said he was able to see better.
  • gdpawel
    gdpawel Member Posts: 523
    Avastin for radiation-induced necrosis
    At the time (2000) I was looking into Hyperbaric Oxygen Therapy (HBOT) for my wife's radiation-induced necrosis, clinical trials were being done at the University of Cincinnati and at Duke University. Both instituted comprehensive, multidisciplinary approaches with ongoing clinical and imaging assessments.

    HBOT was a useful therapeutic option for patients with confirmed symptomatic diffuse radiation necrosis. Until the new millenium, the only treatment for patients had been pentoxifyline or heparin therapy, and it was almost always unsuccessful. The good news about HBOT was that it worked.

    I've received numerous correspondence over the last ten years from loved-ones of HBOT treatment patients, some were very successful and some that had been too late for treatment.

    There has been some very recent new development for treating radiation-induced necrosis with the monoclonal antibody Avastin.

    Resarchers at M.D. Anderson, have postulated that radiation therapy damages astrocytes, a cell type involved in various brain functions and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. By preventing VEGF from reaching leaky capillaries that are associated with brain swelling (edema), Avastin may help in radiation-induced necrosis.

    Studies there have shown that the monoclonal antibody Avastin may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. While this suggests that radiation necrosis of the brain can be successfully managed, perhaps it can even be prevented with Avastin (OncoLog, May 2009, Vol. 54, No. 5).

    http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html
  • KMPonder
    KMPonder Member Posts: 102
    gdpawel said:

    Avastin for radiation-induced necrosis
    At the time (2000) I was looking into Hyperbaric Oxygen Therapy (HBOT) for my wife's radiation-induced necrosis, clinical trials were being done at the University of Cincinnati and at Duke University. Both instituted comprehensive, multidisciplinary approaches with ongoing clinical and imaging assessments.

    HBOT was a useful therapeutic option for patients with confirmed symptomatic diffuse radiation necrosis. Until the new millenium, the only treatment for patients had been pentoxifyline or heparin therapy, and it was almost always unsuccessful. The good news about HBOT was that it worked.

    I've received numerous correspondence over the last ten years from loved-ones of HBOT treatment patients, some were very successful and some that had been too late for treatment.

    There has been some very recent new development for treating radiation-induced necrosis with the monoclonal antibody Avastin.

    Resarchers at M.D. Anderson, have postulated that radiation therapy damages astrocytes, a cell type involved in various brain functions and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. By preventing VEGF from reaching leaky capillaries that are associated with brain swelling (edema), Avastin may help in radiation-induced necrosis.

    Studies there have shown that the monoclonal antibody Avastin may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. While this suggests that radiation necrosis of the brain can be successfully managed, perhaps it can even be prevented with Avastin (OncoLog, May 2009, Vol. 54, No. 5).

    http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

    In what area was your wife's
    In what area was your wife's radiation necrosis?

    My husband is on Day 12 of HBOT. He's seen no change. He was actually placed on Avastin, soon after the vision loss, but the necrosis got worse quickly. His Duke neuro-oncologist suggested it is possible in a very few patients that Avastin works unfavorable with necrosis, so he was taken off. His latest MRI shows no change in the necrosis, yet his visual symptoms have gotten worse. We head back to the neuro-ophthalmologist today to see how his vision has changed. I am curious if we got treatment started too late, as it was about two months after the intial onset of loss while the doctors tried other options. We've also been told it could take 30 treatments or more to see any changes, so we still have a way to go there.

    The sad part is, this is nothing that was discussed with us as a possibility of happening, but when you are trying to treat brain tumors, survival is most important. It has been a devastating situation to wrap our heads around. My husband is handling it beautifully, while I sit and worry.

    Thanks for your input.
  • Rory1987
    Rory1987 Member Posts: 120
    gdpawel said:

    Avastin for radiation-induced necrosis
    At the time (2000) I was looking into Hyperbaric Oxygen Therapy (HBOT) for my wife's radiation-induced necrosis, clinical trials were being done at the University of Cincinnati and at Duke University. Both instituted comprehensive, multidisciplinary approaches with ongoing clinical and imaging assessments.

    HBOT was a useful therapeutic option for patients with confirmed symptomatic diffuse radiation necrosis. Until the new millenium, the only treatment for patients had been pentoxifyline or heparin therapy, and it was almost always unsuccessful. The good news about HBOT was that it worked.

    I've received numerous correspondence over the last ten years from loved-ones of HBOT treatment patients, some were very successful and some that had been too late for treatment.

    There has been some very recent new development for treating radiation-induced necrosis with the monoclonal antibody Avastin.

    Resarchers at M.D. Anderson, have postulated that radiation therapy damages astrocytes, a cell type involved in various brain functions and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. By preventing VEGF from reaching leaky capillaries that are associated with brain swelling (edema), Avastin may help in radiation-induced necrosis.

    Studies there have shown that the monoclonal antibody Avastin may be able to stop radiation necrosis of the brain and allow some of the damage to be reversed. While this suggests that radiation necrosis of the brain can be successfully managed, perhaps it can even be prevented with Avastin (OncoLog, May 2009, Vol. 54, No. 5).

    http://www2.mdanderson.org/depts/oncolog/articles/09/5-may/5-09-2.html

    Avastin
    It's great that a drug could prevent and reverse the effects of radiation necrosis but I've read articles that avastin is a very expensive drug that could cost up to $8000-12,000 per treatment. If that costs that much already in the U.S I wonder how much more it would cost here in the Philippines.
  • gdpawel
    gdpawel Member Posts: 523
    KMPonder said:

    In what area was your wife's
    In what area was your wife's radiation necrosis?

    My husband is on Day 12 of HBOT. He's seen no change. He was actually placed on Avastin, soon after the vision loss, but the necrosis got worse quickly. His Duke neuro-oncologist suggested it is possible in a very few patients that Avastin works unfavorable with necrosis, so he was taken off. His latest MRI shows no change in the necrosis, yet his visual symptoms have gotten worse. We head back to the neuro-ophthalmologist today to see how his vision has changed. I am curious if we got treatment started too late, as it was about two months after the intial onset of loss while the doctors tried other options. We've also been told it could take 30 treatments or more to see any changes, so we still have a way to go there.

    The sad part is, this is nothing that was discussed with us as a possibility of happening, but when you are trying to treat brain tumors, survival is most important. It has been a devastating situation to wrap our heads around. My husband is handling it beautifully, while I sit and worry.

    Thanks for your input.

    Radiation-induced necrosis
    KMPonder

    My wife's radiation-induced necrosis was diffuse (all over the brain), and because whole brain radiation is diffuse, associated reaction in surrounding normal brain. An unenhanced/enhanced brain MRI from the previous year and another one a year later showed the progressive deteriation of her white matter (white matter disease). Late delayed effects are classified into diffuse white-matter injury, radiation-induced arteriopathy and stroke, and late delayed radiation necrosis. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels.

    I can see where radiation can allow the lining of the brain to become permeable to VEGF and VEGF can induce the brain cells to make more VEGF and self-propagating brain damage ensues. And Avastin can disable VEGF.

    The MD Anderson research team postulates that radiation therapy damages astrocytes, a cell type involved in various brain functions, and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. And the ultimate question is "is that all that's going on?"

    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 acts as a drug when 100 percent oxygen is delivered at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber.

    If this is the case, the judicious application of Avastin can normalize the vasculature by pruning the immature vessels and fortifying the remaining ones. Normalized vasculature is less tortuous and the vessels are more uniformally covered by pericytes (in capillaries which regulate the blood-brain barrier) and basement membrane (thin sheet of fibers which lines the interior surface of blood vessels).

    A drop in vascular permeability induces trans-vascular gradients in oncotic and hydrostatic pressure in blood vessels. The induced hydrostatic pressure gradient improves the penetration of large molecules (Avastin is a large molecule drug) into vessels.

    Why Avastin wouldn't work in some patients would be the same as Avastin working in some patients. They really don't know. And also, there is the possibility of it being too late for a positive reaction, as is the case for HBOT sometimes.

    Rory

    Someone from the Phillippines wrote to me a couple weeks ago about Avastin. She said they can't even get the drug there, let alone how costly it may be.
  • Rory1987
    Rory1987 Member Posts: 120
    gdpawel said:

    Radiation-induced necrosis
    KMPonder

    My wife's radiation-induced necrosis was diffuse (all over the brain), and because whole brain radiation is diffuse, associated reaction in surrounding normal brain. An unenhanced/enhanced brain MRI from the previous year and another one a year later showed the progressive deteriation of her white matter (white matter disease). Late delayed effects are classified into diffuse white-matter injury, radiation-induced arteriopathy and stroke, and late delayed radiation necrosis. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels.

    I can see where radiation can allow the lining of the brain to become permeable to VEGF and VEGF can induce the brain cells to make more VEGF and self-propagating brain damage ensues. And Avastin can disable VEGF.

    The MD Anderson research team postulates that radiation therapy damages astrocytes, a cell type involved in various brain functions, and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. And the ultimate question is "is that all that's going on?"

    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 acts as a drug when 100 percent oxygen is delivered at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber.

    If this is the case, the judicious application of Avastin can normalize the vasculature by pruning the immature vessels and fortifying the remaining ones. Normalized vasculature is less tortuous and the vessels are more uniformally covered by pericytes (in capillaries which regulate the blood-brain barrier) and basement membrane (thin sheet of fibers which lines the interior surface of blood vessels).

    A drop in vascular permeability induces trans-vascular gradients in oncotic and hydrostatic pressure in blood vessels. The induced hydrostatic pressure gradient improves the penetration of large molecules (Avastin is a large molecule drug) into vessels.

    Why Avastin wouldn't work in some patients would be the same as Avastin working in some patients. They really don't know. And also, there is the possibility of it being too late for a positive reaction, as is the case for HBOT sometimes.

    Rory

    Someone from the Phillippines wrote to me a couple weeks ago about Avastin. She said they can't even get the drug there, let alone how costly it may be.

    that definitely sucks Im
    that definitely sucks Im getting the feeling that our customs agency is behind all the stuff about not being able to get the drugs in our country...

    BTW, do you happen to receive emails from people who had positive results from HBOT after WBR treatments?
  • gdpawel
    gdpawel Member Posts: 523
    Rory1987 said:

    that definitely sucks Im
    that definitely sucks Im getting the feeling that our customs agency is behind all the stuff about not being able to get the drugs in our country...

    BTW, do you happen to receive emails from people who had positive results from HBOT after WBR treatments?

    HBOT result emails
    Rory

    Over the last ten years, I have received a number of emails from radiation necrosis patients (or their loved-ones) who had HBOT. One was from the mother of a young woman who was in the Duke University trial. In those emails, some described that HBOT came at a time when it was too late. Some, however, have started to come around, and even others that have been cured. What is proper timing? I had one respondent that insisted not to wait, but to have HBOT immediately after radiation treatments (not to wait and see if there will be side-effects).

    Greg
  • KMPonder
    KMPonder Member Posts: 102
    gdpawel said:

    Radiation-induced necrosis
    KMPonder

    My wife's radiation-induced necrosis was diffuse (all over the brain), and because whole brain radiation is diffuse, associated reaction in surrounding normal brain. An unenhanced/enhanced brain MRI from the previous year and another one a year later showed the progressive deteriation of her white matter (white matter disease). Late delayed effects are classified into diffuse white-matter injury, radiation-induced arteriopathy and stroke, and late delayed radiation necrosis. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels.

    I can see where radiation can allow the lining of the brain to become permeable to VEGF and VEGF can induce the brain cells to make more VEGF and self-propagating brain damage ensues. And Avastin can disable VEGF.

    The MD Anderson research team postulates that radiation therapy damages astrocytes, a cell type involved in various brain functions, and causes them to leak VEGF. This leaked VEGF might then cause further damage to brain cells and further leakage of VEGF. And the ultimate question is "is that all that's going on?"

    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 acts as a drug when 100 percent oxygen is delivered at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber.

    If this is the case, the judicious application of Avastin can normalize the vasculature by pruning the immature vessels and fortifying the remaining ones. Normalized vasculature is less tortuous and the vessels are more uniformally covered by pericytes (in capillaries which regulate the blood-brain barrier) and basement membrane (thin sheet of fibers which lines the interior surface of blood vessels).

    A drop in vascular permeability induces trans-vascular gradients in oncotic and hydrostatic pressure in blood vessels. The induced hydrostatic pressure gradient improves the penetration of large molecules (Avastin is a large molecule drug) into vessels.

    Why Avastin wouldn't work in some patients would be the same as Avastin working in some patients. They really don't know. And also, there is the possibility of it being too late for a positive reaction, as is the case for HBOT sometimes.

    Rory

    Someone from the Phillippines wrote to me a couple weeks ago about Avastin. She said they can't even get the drug there, let alone how costly it may be.

    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.
  • Rory1987
    Rory1987 Member Posts: 120
    gdpawel said:

    HBOT result emails
    Rory

    Over the last ten years, I have received a number of emails from radiation necrosis patients (or their loved-ones) who had HBOT. One was from the mother of a young woman who was in the Duke University trial. In those emails, some described that HBOT came at a time when it was too late. Some, however, have started to come around, and even others that have been cured. What is proper timing? I had one respondent that insisted not to wait, but to have HBOT immediately after radiation treatments (not to wait and see if there will be side-effects).

    Greg

    I guess your respondent is
    I guess your respondent is right i wouldn't want to do the "wait and see" method. And I guess i'll start discussing this with my parents when to start HBOT since a good friend of my dad knows someone here in our country who is in the coast guard and he said that they have the latest HBOT chamber in oe of their ships.

    Do you happen to know How many sessions does it require for brain radionecrosis and should I discuss this first with my doctors? Thanks for sharing your information Mr. Greg
  • gdpawel
    gdpawel Member Posts: 523
    Rory1987 said:

    I guess your respondent is
    I guess your respondent is right i wouldn't want to do the "wait and see" method. And I guess i'll start discussing this with my parents when to start HBOT since a good friend of my dad knows someone here in our country who is in the coast guard and he said that they have the latest HBOT chamber in oe of their ships.

    Do you happen to know How many sessions does it require for brain radionecrosis and should I discuss this first with my doctors? Thanks for sharing your information Mr. Greg

    HBOT for radiation-induced necrosis
    Rory

    By all means discuss this with your doctor!

    The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

    Hyperbaric oxygen therapy is administered by delivering 100 percent oxygen at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber. Hyperbaric oxygen acts as a drug, eliciting varying levels of response at different treatment depths, durations and dosages, and has been proven effective as adjunctive therapy for specifically indicated conditions.

    Oxygen is a natural gas that is absolutely necessary for life and healing. Purified oxygen is defined as a drug but is the most natural of all drugs. Oxygen under pressure is still the same gas but is more able to penetrate into parts of the body where the arterial flow is hindered, producing ischemia (loss of blood flow) and hypoxia (lack of oxygen). When oxygen under pressure is breathed by a patient in a sealed chamber, it is termed a hyperbaric oxygen treatment (HBOT).

    In addition to raising the arterial levels of oxygen 10 to 15 times higher than that produced by normal atmospheric pressure, the pressure exerted within the body can and does exert therapeutic benefits on acute and chronically traumatized and swollen tissus.

    If on medicare, the approved course is 2.0 atm (two times above atmospheric pressure) for 90 minutes 20-30 sessions. For hyperbaric oxygen therapy to be covered under the Medicare program in the United States, the physician must be in constant attendance during the entire treatment. This is a professional activity that cannot be delegated in that it requires independent medical judgment by the physician. The physician must be present, carefully monitoring the patient during the hyperbaric oxygen therapy session and be immediately available should a complication occur. This requirement applies in all settings and no payment will be made by Medicare unless the physician is in constant attendance during the procedure.

    Who Should Avoid This Therapy?

    Avoid these treatments if you have a seizure disorder, emphysema, a high fever, or an upper respiratory infection. Do not undergo them if you have a severe fluid build-up in the sinuses, ears, or other body cavities. Forego them if you've had surgery for optic neuritis, or have ever had a collapsed lung. Avoid them, too, if you are taking doxorubicin (Adriamycin), cisplatin (Platinol), disulfiram (Antabuse), or mafenide acetate (Sulfamylon).

    Pregnancy was once considered a contraindication for hyperbaric therapy. However, it's now deemed acceptable if a condition will cause long-term damage to the mother or fetus. For example, the treatments are given to pregnant women with carbon monoxide poisoning, which is toxic to both mother and child.

    What Side Effects May Occur?

    Seizures, a result of the direct effect of oxygen on the brain, are the most serious side effect associated with hyperbaric therapy. The risk is estimated at one in 5,000. Every chamber is equipped with a quick-release mechanism. If a seizure occurs, the oxygen will be immediately released and the seizure will subside.

    Minor side effects include popping of the ears similar to that experienced in a descending aircraft. Sinus pain, earache, and headache are other possible side effects. In fact, pain may occur in any body cavity where air can get in but can't get out. For example, dental pain may occur if a filling has trapped air beneath it. In rare cases, pressurized oxygen may rupture an eardrum.

    http://www.oncolink.org/treatment/article.cfm?c=5&s=33&id=51

    http://www.jacobi-hyperbaric.com/html/radiation-hyperbaric.html

    http://emedicine.medscape.com/article/1464149-overview

    http://www.florida-oxygen.com/html/

    Greg
  • gdpawel
    gdpawel Member Posts: 523
    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.

    To Be or Not To Be, That is the Question
    KMPonder

    PET is useful in a variety of therapy-monitoring applications, including distinguishing between radiation necrosis and recurrence; determining the resectability of a recurrence; and evaluating response to chemotherapy or radiation therapy. This is because effective therapy leads to rapid reductions in the glucose uptake levels of tumors. PET tracers can easily reveal this drop in metabolic activity and show - sometimes within minutes or hours - whether a patient is responding positively to a particular course of treatment. With this information, physicians can quickly modify less effective therapy, thereby improving patient outcomes and reducing the cost of ineffective treatment.

    The MRI is a completely different technology from an MRI. An MRI images the anatomy by using a magnet that goes around the body to excite hydrogen atoms. After the atoms return to their normal level of excitation, they emit energy that is picked up on a scanner. Since humans are composed primarily of water (which is two parts hydrogen), MRI's provide highly refined detail of the anatomy. The developed image shows anatomy by differentiating between tissues that have a lot of water (such as fat, cerebrospinal fluid or discs) and tissues that do not have much water (such as bone, cartilage, and nerve roots).

    My wife had post-operative whole brain radiation for a solitary brain met (she never should have received this treatment). The supposed purpose was to "mop up" any "theoretical" microscopic cancer cells. Well, a year later, four, mm-sized metastatic tumors were found in and around the previously resected cerebellar tumor. Now, the first time they were discovered was with a combination unenhanced/enhanced MRI. The observation between the two is what made the accuracy of the scan more pronounced. At that time, they wanted to do "waitful watching," however, we didn't. We had a Pet scan done and it confirmed the four mm-sized tumors. That's when we decided that because of her weakened condition (surgery was out ot the question), Gamma-Knife would be the best protocol to use.

    Many patients in this situation have a mixture of tumor and radiation necrosis or either, and a biopsy may be necessary to distinguish it. Neither symptoms nor radiographic findings clearly distinguish radiation-induced necrosis from tumor. However, the FDG-PET Scan and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor. I've had a few emails from loved-ones of patients post-radiation treatment that had whole brain radiation performed, and there was no tumor, just necrotic tissue that looks like tumor recurrence. Of course, whole brain radiation is totally worthless for necrosis.

    Radiation-induced necrosis has been estimated to occur in 20% to 25% of patients for cancerous tumors in the brain. Some studies say it can develop in at least 40% of patients irradiated for tumors following large volume or whole brain radiation and possibly 3% to 9% of patients irradiated focally (as in stereotactic radiation) for brain tumors (in reality, they just don't know). Even with more localized use of radiation, significant neurological deficits can result.

    I know the situation about not wanting to fuel the oxygen if there is a tumor. I researched this with my PCP and my wife's son (a chemical biologist) and found that the oxygen in HBOT would not affect the oxygen needed for cancer cells to grow (it's been some time). I was still willing to have my wife receive HBOT at Duke, but she did not last that long to have it done. Avastin and HBOT may be overdoing it, for the body to take.

    Don't think MD Anderson or Johns Hopkins are going to give you any better information, although you should for Avastin at MD Anderson. Although Anderson's Dr. Victor A. Levin just retired, I'm sure his associates are taking the bull-by-the-horns on this project. Duke's Center for Hyperbaric Medicine, particularly Dr. Richard E. Moon, would be a good source for HBOT.

    Greg
  • KMPonder
    KMPonder Member Posts: 102
    gdpawel said:

    To Be or Not To Be, That is the Question
    KMPonder

    PET is useful in a variety of therapy-monitoring applications, including distinguishing between radiation necrosis and recurrence; determining the resectability of a recurrence; and evaluating response to chemotherapy or radiation therapy. This is because effective therapy leads to rapid reductions in the glucose uptake levels of tumors. PET tracers can easily reveal this drop in metabolic activity and show - sometimes within minutes or hours - whether a patient is responding positively to a particular course of treatment. With this information, physicians can quickly modify less effective therapy, thereby improving patient outcomes and reducing the cost of ineffective treatment.

    The MRI is a completely different technology from an MRI. An MRI images the anatomy by using a magnet that goes around the body to excite hydrogen atoms. After the atoms return to their normal level of excitation, they emit energy that is picked up on a scanner. Since humans are composed primarily of water (which is two parts hydrogen), MRI's provide highly refined detail of the anatomy. The developed image shows anatomy by differentiating between tissues that have a lot of water (such as fat, cerebrospinal fluid or discs) and tissues that do not have much water (such as bone, cartilage, and nerve roots).

    My wife had post-operative whole brain radiation for a solitary brain met (she never should have received this treatment). The supposed purpose was to "mop up" any "theoretical" microscopic cancer cells. Well, a year later, four, mm-sized metastatic tumors were found in and around the previously resected cerebellar tumor. Now, the first time they were discovered was with a combination unenhanced/enhanced MRI. The observation between the two is what made the accuracy of the scan more pronounced. At that time, they wanted to do "waitful watching," however, we didn't. We had a Pet scan done and it confirmed the four mm-sized tumors. That's when we decided that because of her weakened condition (surgery was out ot the question), Gamma-Knife would be the best protocol to use.

    Many patients in this situation have a mixture of tumor and radiation necrosis or either, and a biopsy may be necessary to distinguish it. Neither symptoms nor radiographic findings clearly distinguish radiation-induced necrosis from tumor. However, the FDG-PET Scan and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor. I've had a few emails from loved-ones of patients post-radiation treatment that had whole brain radiation performed, and there was no tumor, just necrotic tissue that looks like tumor recurrence. Of course, whole brain radiation is totally worthless for necrosis.

    Radiation-induced necrosis has been estimated to occur in 20% to 25% of patients for cancerous tumors in the brain. Some studies say it can develop in at least 40% of patients irradiated for tumors following large volume or whole brain radiation and possibly 3% to 9% of patients irradiated focally (as in stereotactic radiation) for brain tumors (in reality, they just don't know). Even with more localized use of radiation, significant neurological deficits can result.

    I know the situation about not wanting to fuel the oxygen if there is a tumor. I researched this with my PCP and my wife's son (a chemical biologist) and found that the oxygen in HBOT would not affect the oxygen needed for cancer cells to grow (it's been some time). I was still willing to have my wife receive HBOT at Duke, but she did not last that long to have it done. Avastin and HBOT may be overdoing it, for the body to take.

    Don't think MD Anderson or Johns Hopkins are going to give you any better information, although you should for Avastin at MD Anderson. Although Anderson's Dr. Victor A. Levin just retired, I'm sure his associates are taking the bull-by-the-horns on this project. Duke's Center for Hyperbaric Medicine, particularly Dr. Richard E. Moon, would be a good source for HBOT.

    Greg

    Thank you for your expertise
    Thank you for your expertise on the matter. We are still awaiting lumbar puncture results from late last week. I am not sure they'll get anything conclusive with this, unless it is a tumor. It's getting all so confusing - why one doctor thinks it's tumor and Duke doesn't.

    I think it's safe to say in my husband's case the WBR he had from 1987 caused the AA tumors he presented in 2009. (I didn't say it, Duke said it.) Makes me wonder if what is happening on the optic chiasm now is simply just more damaged over time caused by the WBR, as the focal radiation in 2009, done at Duke, was nowhere near this area. I presume damage could still occur, though. I guess since he had 22 years of tumor-free, healthy living, this is just a shock to our system. The "back of the head" still looks great from the latest MRI. Temodar seemed to have done the job there. Just so confused by the cause of his loss of vision that it's hard to focus on the possibility of new tumor growth and all that might entail on top of the now blindness.

    Treatment 13 on HBOT was today. We've been told it can take 30 or more to see results. That's IF they know it to be necrosis.
  • Rory1987
    Rory1987 Member Posts: 120
    Sucks
    I discussed HBOT with my radiation oncologist yesterday and he doesn't seem to know about it being used as treatment for radiation-induced injuries, Im suspecting that he is just in denial because he knows that his field of expertise has bad side effects. He even said that it's efficacy is being studied and it's very expensive and all that stuff... Sigh though my other oncologist said she hasn't heard of HBOT but she has nothing against it. Good thing I found HBOT treatment facilities here with contact details in tha website, hopefully we can discuss it with the doctors in those facilities
  • gdpawel
    gdpawel Member Posts: 523
    Rory1987 said:

    Sucks
    I discussed HBOT with my radiation oncologist yesterday and he doesn't seem to know about it being used as treatment for radiation-induced injuries, Im suspecting that he is just in denial because he knows that his field of expertise has bad side effects. He even said that it's efficacy is being studied and it's very expensive and all that stuff... Sigh though my other oncologist said she hasn't heard of HBOT but she has nothing against it. Good thing I found HBOT treatment facilities here with contact details in tha website, hopefully we can discuss it with the doctors in those facilities

    Specialists needed on your cancer treatment team
    As seen many times in cancer medicine, oncologists are paid to treat. Many times in this overzealous need to treat, they overlook the side effects that can occur from particularly overtreatment. This is not what oncologists do. They don't know how to treat the side effects of their treatments.

    Cancer patients need to add to their repertoire of specialists for their disease. A Physical Medicine and Rehabilitation Specialist for neuropathy, a Pulmonary Specialist for radiation pneumonitis, a Neurologist for leukoencephalopathy or worse, radiation-induced necrosis, an Infectious Disease Specialist for the infections that you will have to contend with for the rest of your life, and an Endocrinology & Metabolism Specialist, depending on what actually could be wrong with the patient.

    The main justification of having medical oncology be a medical specialty unto itself is the expertise it requires to push the envelop with toxic drugs to kill the tumor without killing the patient. It's analogous to the old medical specialty of syphilology, which existed because of the expertise it took to give toxic cocktails of the various (mostly ineffective drugs). The formulas were quite complicated, but they persisted until the discovery of penicillin, which finally killed off not just the syphillis spirochete but also the specialty of siphilology.

    I would hopefully expect that something like this will happen with both cancer and medical oncology, and I would be thrilled if it happened while I was still around to see it.
  • Rory1987
    Rory1987 Member Posts: 120
    gdpawel said:

    Specialists needed on your cancer treatment team
    As seen many times in cancer medicine, oncologists are paid to treat. Many times in this overzealous need to treat, they overlook the side effects that can occur from particularly overtreatment. This is not what oncologists do. They don't know how to treat the side effects of their treatments.

    Cancer patients need to add to their repertoire of specialists for their disease. A Physical Medicine and Rehabilitation Specialist for neuropathy, a Pulmonary Specialist for radiation pneumonitis, a Neurologist for leukoencephalopathy or worse, radiation-induced necrosis, an Infectious Disease Specialist for the infections that you will have to contend with for the rest of your life, and an Endocrinology & Metabolism Specialist, depending on what actually could be wrong with the patient.

    The main justification of having medical oncology be a medical specialty unto itself is the expertise it requires to push the envelop with toxic drugs to kill the tumor without killing the patient. It's analogous to the old medical specialty of syphilology, which existed because of the expertise it took to give toxic cocktails of the various (mostly ineffective drugs). The formulas were quite complicated, but they persisted until the discovery of penicillin, which finally killed off not just the syphillis spirochete but also the specialty of siphilology.

    I would hopefully expect that something like this will happen with both cancer and medical oncology, and I would be thrilled if it happened while I was still around to see it.

    True.
    My radio-oncologist even said that there has been reports that suggest that the use of HBOT to treat radiation-injuries is exaggerated. BUt from what I've read from the sources you have given, There has been high success rates in treating radiation necrosis. I've even read an article that stated that it has a 90% success rate in treating the radionecrosis. I became optimistic aboutit's success after reading "posterchild's" reply to your journal in inspire.com reagrding using HBOT in stopping her brain radionecrosis back in 2006.
  • Rory1987
    Rory1987 Member Posts: 120
    gdpawel said:

    Specialists needed on your cancer treatment team
    As seen many times in cancer medicine, oncologists are paid to treat. Many times in this overzealous need to treat, they overlook the side effects that can occur from particularly overtreatment. This is not what oncologists do. They don't know how to treat the side effects of their treatments.

    Cancer patients need to add to their repertoire of specialists for their disease. A Physical Medicine and Rehabilitation Specialist for neuropathy, a Pulmonary Specialist for radiation pneumonitis, a Neurologist for leukoencephalopathy or worse, radiation-induced necrosis, an Infectious Disease Specialist for the infections that you will have to contend with for the rest of your life, and an Endocrinology & Metabolism Specialist, depending on what actually could be wrong with the patient.

    The main justification of having medical oncology be a medical specialty unto itself is the expertise it requires to push the envelop with toxic drugs to kill the tumor without killing the patient. It's analogous to the old medical specialty of syphilology, which existed because of the expertise it took to give toxic cocktails of the various (mostly ineffective drugs). The formulas were quite complicated, but they persisted until the discovery of penicillin, which finally killed off not just the syphillis spirochete but also the specialty of siphilology.

    I would hopefully expect that something like this will happen with both cancer and medical oncology, and I would be thrilled if it happened while I was still around to see it.

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