CSN Login
Members Online: 15

HBOT due to Radiation Necrosis on Optic Chiasm

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
gdpawel
Posts: 549
Joined: May 2001

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
gdpawel
Posts: 549
Joined: May 2001

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

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
gdpawel
Posts: 549
Joined: May 2001

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

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
gdpawel
Posts: 549
Joined: May 2001

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
gdpawel
Posts: 549
Joined: May 2001

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).

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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???

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
Rory1987
Posts: 122
Joined: Nov 2009

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

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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.

tommybear
Posts: 112
Joined: Oct 2009

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

Michele S.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network