Details, details, and the phone doesn't stop as I try to write them
Our trip to the MNI (Mtl. Neurological Institute) was fruitful. We arrived at 1:00 and were seen at 2:50, but it was well worth the wait. Dr. Hauerstock greeted us (a resident perhaps) and asked many questions. He did a brief examination and informed us that radiotherapy is usually in order for this type of tumour. He excused himself, and returned with Dr. Luis (spelled it wrong yesterday, I believe) Souhami in tow.
Dr. Souhami explained, quite patiently I might add, that tumours of this nature will grow. The question that cannot be answered is how fast. Radiotherapy will keep it under control for a longer period.
I was relieved when I noticed that this guy was not in any way perturbed by me writing down his every word. Dr. Mohr tends to get ticked off every time we started to write down what he said, and this riled me up, and infuriated Tamara to no end. I feel so much more secure in this doctor's hands, simply because he allowed me to play secretary, seemingly understands why I feel the need to do so, and encouraged us to ask as many questions as come to mind.
To continue, he shared information about a study recently done on patients with grade 4 of this type of tumour (Gilly's is probably - not 100% confirmed until we have that darn pathology report in hand - grade 2) whereby they used radiotherapy plus chemo(a drug called temodal). The combination proved successful.
The measure of 'successful' is still a scary number (he said more than 1/2 - he rephrased this to estimate approximately 60% remained alive for more than 5 years). But this is still based on grade 4.
They are currently doing a study on grade 2 with the same combo, and he stated that Gilly is eligible (more than likely. Again, depending on the final pathology report which we hope to abscond with tomorrow after our meeting with Dr. Mohr; everyone and his brother is waiting for the report!!!). The drug would be free of charge in this case, which is important to consider, because it is very costly otherwise.
So if we go with this option, Gilly would receive radiation at the Montreal General (that is where the machines are located). He would be followed by Dr. Souhami and the neuro oncologist (sorry if it's one word; gotta check if they ask me to write for E.R.). Gilly would receive radiation and a pill (temodal) for six weeks, and then only the pill (stepped up a notch or 2 in strength) for a year; 5 days in a row on, then 3 weeks off. There would be a four week waiting period between the 6 weeks of radiation and the 5 days on and 3 weeks off of the chemo.
Side effects of the chemo would be nausea and blood will need to be taken weekly to watch blood counts closely. The radiation would result in fatigue and hair loss. As a child, I always said, "Maybe I'll never die. I could be the first person to live forever. Who knows? Maybe no one has done it yet, and that's why we think all people die someday." Well, maybe Gilly will not experience discomforts. I know it's probably what you'd call a a pipe dream, but I like to think that anything is possible.
We have been sent some interesting information about Gamma Beams (Knives) by Gilly's cousin, Howard. Joey actually read about this early on in this real life drama and mentioned it to Evan. We asked Dr. Souhami about this, and he said the tumour is too large.
Jerry received a call from Aviyam today telling him that their cousin Jack, an expert in this field from White Plains (New York, I guess) feels that although he agrees with Dr. Souhami's treatment plan, Gamma Knives would be a better option.
We received yet another call this evening from Sam (Uncle Leo's son) who is a Head and Neck specialist at Weill Cornell Medical Center. He deals with tumours pressing on the brain rather than those in the brain. He consulted with the Chairman of the Dept. of Neurosurgery at Sloan Kettering in New York (the mothership in this domain, as Sam put it), and was told that neither treatment would be curative; only palliation (could be 2 l's). In other words, there is no cure, but treatments could be used to ease the discomfort and arrest or slow growth down.
Sam suggests we consider quality of life issues in making our decision. The demands of treatments need to be weighed.
He explained that gamma knives may or may not be an option, again due to the size of the lesion. He went on to provide a clearer picture of this mysterious sounding, high tech treatment. Radiation, he explained, is directed towards a zone, whereas the gamma knife is very specific. There would be one session as opposed to many, and the treatment is easy and well tolerated. We will continue looking into this option. Howard informed us that Toronto Western Hospital operates the newest of the 3 gamma knives in Canada.
Sam assures us that there is a strong argument for treating and also one for leaving things as is, again back to the quality of life issue in terms of demands of treatment.
He assured us that Montreal is "relatively up to date" in this area, according to the doctor he consulted with, but suggests we visit Sloan Kettering if we feel the need for another opinion.
Once everyone actually has the pathology report, we hope that the answers will begin to be more unanimous and less anonymous; well you know what I mean. We need more specifics, and we hope tomorrow will bring better information to our doorstep.
Dr. Souhami explained, quite patiently I might add, that tumours of this nature will grow. The question that cannot be answered is how fast. Radiotherapy will keep it under control for a longer period.
I was relieved when I noticed that this guy was not in any way perturbed by me writing down his every word. Dr. Mohr tends to get ticked off every time we started to write down what he said, and this riled me up, and infuriated Tamara to no end. I feel so much more secure in this doctor's hands, simply because he allowed me to play secretary, seemingly understands why I feel the need to do so, and encouraged us to ask as many questions as come to mind.
To continue, he shared information about a study recently done on patients with grade 4 of this type of tumour (Gilly's is probably - not 100% confirmed until we have that darn pathology report in hand - grade 2) whereby they used radiotherapy plus chemo(a drug called temodal). The combination proved successful.
The measure of 'successful' is still a scary number (he said more than 1/2 - he rephrased this to estimate approximately 60% remained alive for more than 5 years). But this is still based on grade 4.
They are currently doing a study on grade 2 with the same combo, and he stated that Gilly is eligible (more than likely. Again, depending on the final pathology report which we hope to abscond with tomorrow after our meeting with Dr. Mohr; everyone and his brother is waiting for the report!!!). The drug would be free of charge in this case, which is important to consider, because it is very costly otherwise.
So if we go with this option, Gilly would receive radiation at the Montreal General (that is where the machines are located). He would be followed by Dr. Souhami and the neuro oncologist (sorry if it's one word; gotta check if they ask me to write for E.R.). Gilly would receive radiation and a pill (temodal) for six weeks, and then only the pill (stepped up a notch or 2 in strength) for a year; 5 days in a row on, then 3 weeks off. There would be a four week waiting period between the 6 weeks of radiation and the 5 days on and 3 weeks off of the chemo.
Side effects of the chemo would be nausea and blood will need to be taken weekly to watch blood counts closely. The radiation would result in fatigue and hair loss. As a child, I always said, "Maybe I'll never die. I could be the first person to live forever. Who knows? Maybe no one has done it yet, and that's why we think all people die someday." Well, maybe Gilly will not experience discomforts. I know it's probably what you'd call a a pipe dream, but I like to think that anything is possible.
We have been sent some interesting information about Gamma Beams (Knives) by Gilly's cousin, Howard. Joey actually read about this early on in this real life drama and mentioned it to Evan. We asked Dr. Souhami about this, and he said the tumour is too large.
Jerry received a call from Aviyam today telling him that their cousin Jack, an expert in this field from White Plains (New York, I guess) feels that although he agrees with Dr. Souhami's treatment plan, Gamma Knives would be a better option.
We received yet another call this evening from Sam (Uncle Leo's son) who is a Head and Neck specialist at Weill Cornell Medical Center. He deals with tumours pressing on the brain rather than those in the brain. He consulted with the Chairman of the Dept. of Neurosurgery at Sloan Kettering in New York (the mothership in this domain, as Sam put it), and was told that neither treatment would be curative; only palliation (could be 2 l's). In other words, there is no cure, but treatments could be used to ease the discomfort and arrest or slow growth down.
Sam suggests we consider quality of life issues in making our decision. The demands of treatments need to be weighed.
He explained that gamma knives may or may not be an option, again due to the size of the lesion. He went on to provide a clearer picture of this mysterious sounding, high tech treatment. Radiation, he explained, is directed towards a zone, whereas the gamma knife is very specific. There would be one session as opposed to many, and the treatment is easy and well tolerated. We will continue looking into this option. Howard informed us that Toronto Western Hospital operates the newest of the 3 gamma knives in Canada.
Sam assures us that there is a strong argument for treating and also one for leaving things as is, again back to the quality of life issue in terms of demands of treatment.
He assured us that Montreal is "relatively up to date" in this area, according to the doctor he consulted with, but suggests we visit Sloan Kettering if we feel the need for another opinion.
Once everyone actually has the pathology report, we hope that the answers will begin to be more unanimous and less anonymous; well you know what I mean. We need more specifics, and we hope tomorrow will bring better information to our doorstep.
posted by Gilly at 4:53 PM
1 Comments:
Having dinner last night with you guys and gals was fun.
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