Grade II Oligodendroglioma - Partial removal Partially Inoperable - Update/Advice

AshleyWF

Been a while since I have posted an update on our situation, figured while I had a few minutes and my brain seemed to be on a somewhat steady rollercoaster today, I’d try and write.

We had our second opinion on Halloween (of all days) for Jordan’s remaining tumor and the wait and see approach. He weighed in again, and has gained another 4 pounds, weight wise he is healthy, defiantly has not had any decrease in appetite. We sat in the room and Jordan asked if I had my list of questions ready, my hand shaking a little I lifted the paper for him to see.

The doctor came in, checked him over asked him questions, everything normal and working properly. To look at Jordan, you would never know he had this happening to him. You would never know he had surgery, you would never know a thing! He pushed on his hands, pushed on his feet asked him a few questions and then turned to Jordan and asked “So what is it that you have been told so far, what do you understand about this cancer” Jordan looked shocked and described what he understood to be going on for about 30 seconds…. THIS SHOCKED ME. When Jordan was done, I told the doctor about the common “for dummies” book and asked him to explain that way and I listed off quite a few questions. This is what we were told.

His tumor is classified unique at the cancer clinic in Abbotsford, BC. It isn’t just one doctor giving the “wait and see” advise but an entire panel. Every week they take interesting cases and discuss them together, all 12 of them. Every appointment we have had, all of them have discussed. The remaining tumor is in what he described this time as the main highway of the brain. Right smack in the center, this is where the brain speaks to each side. No one has ever undergone surgery in this location and there is no way he ever will! They want to wait and see what the tumor tells them. Waiting until January for an MRI (this would be the first one, after surgery, for them to go off of every six months) will tell them 1 of three things. It isn’t doing anything, it is growing slowly or it is a higher grade now and growing quickly. The reason there has been no mention of radiation or chemotherapy at this point is as follows. 1) after genetic testing and such, it was shown that this tumor is not responsive to chemotherapy. 2) radiation in the area of the remaining tumor is dangerous as well. Jordan has had no headaches and no side effects after surgery, he is perfectly healthy and back to work, as I mentioned prior, you would never know anything was wrong. He asked us “why would you want to make yourself sick now? It seems as though the only way radiation is going to come into the picture is if it comes back in a new place or the spot that was removed or should it spread from what’s existing into a location they see as safe. Radiation would then come into play after another surgery, should that be a choice.

He told us the things to look for, should it be returning or growing, but seemed very positive and upbeat about Jordan’s health right now and over the next while. It is when they speak of the rate of it occurring again and the chances of it being a higher grade that you can see on their face and in there tone of voice… it is more than likely something we are going to have to deal with. It’s when Jordan asks flat out how long they think he has that the positive upbeat feeling disappears. Every case is different, yes, I know, heard that…. 10 years just isn’t enough, I know that is an average on many factors… but I just want someone to tell us how long we have, what to expect, what next, he seems great, he seems fine, when does that stop!

So we left the clinic once more with the same news we heard in the first place, wait and see. Jordan has gone right back to pretending none of it has happened or is happening and we live the little secret this has become. At first I refused to forget and not talk about it, now I find myself living this little secret as well, almost forgetting for a while until I look at him while he’s lying next to me, peaceful, content and looking healthy and wonder what our future holds.

I received an email from his mom today, asking me if I could talk to Jordan about maybe receiving a third opinion in the states. She sent me information on Cleveland Clinic with the cost and what we would need to do in order to have everything looked at there. She had forwarded an email the clinic sent to her with all sorts of information. After asking around a bit, I have heard they have a great reputation, and now I am dreading asking him to get a third opinion, knowing full well he is just going to ask “why” and try to forget I even asked three minutes later. Does anyone out there have any more information for me on Cleveland Clinic, has anyone been treated there? We are in Canada, and I have noticed that some things are very different, so I think it is worth a shot, the worst they could do is come back with the same advise we were given here. This is at a bit of a cost to us, so if it is something we are going to do, I would like to make sure we go to the right spot!

Thinking of everyone on this forum and thanking you for your continued support.

Ashley

cindysuetoyou

Cleveland Clinic, etc.
Hi, Ashley.

I had a very limited contact with the Cleveland Clinic. One of my family members referred me to them because their website said that they were doing the BBBD treatment there, and we wanted to see if it would be possible for David to be treated there. I called the number on their website: (http://my.clevelandclinic.org/services/blood_brain_barrier_disruption/ns_overview.aspx) and the person who answered the phone said that they had discontinued the blood brain barrier disrupter protocol five years ago. I asked why it was discontinued, and she did not know why. I asked why was it still on their website, and she said that was a question for their marketing department. Of course, I took this all personally and it made me feel not really good about them. I don't know if I got an uninformed person, or if they really did discontinue the BBBD. But I have heard good things about the Cleveland Clinic. And I have read many favorable comments on this site about the Cleveland Clinic, Duke University, MD Anderson, UCSF. I think that most of the big teaching hospitals and universities are all pretty good. The problem is....no one place is having head-and-shoulders-above-the-rest kind of success in treating brain cancers. NIH (National Health Institute in Baltimore, Maryland) told me that if anyone knew what worked for sure, then all the hospitals would be doing it too. And they also said that if you ask three different doctors, you will get four different opinions. I got their point.

I think that if it's feasible and workable for you and Jordan to go to the Cleveland Clinic, then you should go. We got a second opinion because if we hadn't, we would always wonder what if....and then we got a third opinion too. We didn't even travel for the third opinion. We just had all of David's records, surgical reports, MRIs, slides, etc sent to UCSF and had them evaluate all the data and go over the recommended treatment plan from OHSU. We did the consult over the phone. So we saved the cost of a third trip. Actually, the cost wasn't the issue...the time factor was what we were concerned about. We wanted to get David started on chemo and radiation ASAP.

What kind of genetic testing showed that Jordan's tumor is "not responsive to chemo"? Are you referring to the 1p 19q gene deletions not being present? If so, I would suggest that you get a second or even a third opinion about the possibility of chemotherapy down the road. David does not have the deletions and we were told that his tumor MAY not be as sensitive to chemo. They told us that it would still most likely respond, but maybe not be as sensitive to chemo as it could be if David did have the gene deletions. And they could not say for positive sure that the tumor would not respond as much. In fact, they told us that in spite of the lack of the deletions, David did have a favorable response to Temodar, and that they are hopeful because of his response to Temodar,that he will also have a good response to the 3 chemos he just started doing now. (carboplatin, etoposide, and another one...I don't remember how to spell it.) Anyway, I don't know if Jordan's tumor is unique in a way that makes it TOTALLY chemo resistant, and I wonder what another team of doctors might think.

I'm just a simple woman with no medical education and my opinion is not coming from some deep pool of wisdom, so please don't be upset by anything that I said. The last thing I want to do is add more stress to your life. I'm just sharing my two cents' worth....please know that it comes from a heart that desires to help you, even if it's only a tiny bit.

I am like you and I want to talk about David's situation all the time...I want to brainstorm and discuss ideas and questions and possible treatments, etc. but David doesn't like to do that. He does not want cancer to take over his life and become who he is. He wants to live his life not dominated by discussions about cancer, etc. He'd rather talk about Apple computers, sports, his new puppy, our family, etc. He isn't pretending that he doesn't have cancer...he just does not want it to become the focal point of his life....even if it is. I wonder if Jordan is the same way....I wonder if he is not pretending that everything is okay but he is defining what he says and does and even thinks about, and he is not letting cancer have the upper hand. He asked the doctor some pretty tough questions that don't sound like they are coming from someone pretending everything is okay. I have huge admiration for Jordan, having the strength and willpower not to let this overwhelm him and dominate his life. Isn't absolutely amazing and incredible how strong and brave and determined Jordan and David really are? They are my heroes.

I think of you and Jordan often, and I am grateful whenever you post and let us know how you two are doing. Please continue to keep us updated!

Love and blessings, always!
Cindy in Salem, OR

AshleyWF

cindysuetoyou said:

Cleveland Clinic, etc.
Hi, Ashley.

I had a very limited contact with the Cleveland Clinic. One of my family members referred me to them because their website said that they were doing the BBBD treatment there, and we wanted to see if it would be possible for David to be treated there. I called the number on their website: (http://my.clevelandclinic.org/services/blood_brain_barrier_disruption/ns_overview.aspx) and the person who answered the phone said that they had discontinued the blood brain barrier disrupter protocol five years ago. I asked why it was discontinued, and she did not know why. I asked why was it still on their website, and she said that was a question for their marketing department. Of course, I took this all personally and it made me feel not really good about them. I don't know if I got an uninformed person, or if they really did discontinue the BBBD. But I have heard good things about the Cleveland Clinic. And I have read many favorable comments on this site about the Cleveland Clinic, Duke University, MD Anderson, UCSF. I think that most of the big teaching hospitals and universities are all pretty good. The problem is....no one place is having head-and-shoulders-above-the-rest kind of success in treating brain cancers. NIH (National Health Institute in Baltimore, Maryland) told me that if anyone knew what worked for sure, then all the hospitals would be doing it too. And they also said that if you ask three different doctors, you will get four different opinions. I got their point.

I think that if it's feasible and workable for you and Jordan to go to the Cleveland Clinic, then you should go. We got a second opinion because if we hadn't, we would always wonder what if....and then we got a third opinion too. We didn't even travel for the third opinion. We just had all of David's records, surgical reports, MRIs, slides, etc sent to UCSF and had them evaluate all the data and go over the recommended treatment plan from OHSU. We did the consult over the phone. So we saved the cost of a third trip. Actually, the cost wasn't the issue...the time factor was what we were concerned about. We wanted to get David started on chemo and radiation ASAP.

What kind of genetic testing showed that Jordan's tumor is "not responsive to chemo"? Are you referring to the 1p 19q gene deletions not being present? If so, I would suggest that you get a second or even a third opinion about the possibility of chemotherapy down the road. David does not have the deletions and we were told that his tumor MAY not be as sensitive to chemo. They told us that it would still most likely respond, but maybe not be as sensitive to chemo as it could be if David did have the gene deletions. And they could not say for positive sure that the tumor would not respond as much. In fact, they told us that in spite of the lack of the deletions, David did have a favorable response to Temodar, and that they are hopeful because of his response to Temodar,that he will also have a good response to the 3 chemos he just started doing now. (carboplatin, etoposide, and another one...I don't remember how to spell it.) Anyway, I don't know if Jordan's tumor is unique in a way that makes it TOTALLY chemo resistant, and I wonder what another team of doctors might think.

I'm just a simple woman with no medical education and my opinion is not coming from some deep pool of wisdom, so please don't be upset by anything that I said. The last thing I want to do is add more stress to your life. I'm just sharing my two cents' worth....please know that it comes from a heart that desires to help you, even if it's only a tiny bit.

I am like you and I want to talk about David's situation all the time...I want to brainstorm and discuss ideas and questions and possible treatments, etc. but David doesn't like to do that. He does not want cancer to take over his life and become who he is. He wants to live his life not dominated by discussions about cancer, etc. He'd rather talk about Apple computers, sports, his new puppy, our family, etc. He isn't pretending that he doesn't have cancer...he just does not want it to become the focal point of his life....even if it is. I wonder if Jordan is the same way....I wonder if he is not pretending that everything is okay but he is defining what he says and does and even thinks about, and he is not letting cancer have the upper hand. He asked the doctor some pretty tough questions that don't sound like they are coming from someone pretending everything is okay. I have huge admiration for Jordan, having the strength and willpower not to let this overwhelm him and dominate his life. Isn't absolutely amazing and incredible how strong and brave and determined Jordan and David really are? They are my heroes.

I think of you and Jordan often, and I am grateful whenever you post and let us know how you two are doing. Please continue to keep us updated!

Love and blessings, always!
Cindy in Salem, OR

Hi Cindy
Hi Cindy,

Thank you for the response. I will defiantly look more into why they say chemo would be unresponsive. To be honest, I think this is something I have asked, but I tend to forget things once we leave the cancer clinic. My brain can only hold so much I think. I have never understood what the harm in trying would be. I think they have mentioned it may be responsive but not in the way radiation would be, but then went on to explain how dangerous radiation in this location would be. Do you know if after surgery when they have the part of the tumor removed, if they actually test radiation and chemo on the sample? Or if it’s just in genetic that they figure this out?

I to admire Jordan’s and your sons strength in all this, I do believe though that Jordan’s is to a point of unhealthy denial. I have told myself though that, if this is how he can fight this and pull through strong in health and mind, then so be it. If and when the day comes that there is re-growth or expanding, he will have to face it, why not live life to the fullest now and fall back on us then, right? I just feel guilty when we let it go and live as if it’s not there, it is always in the back of my mind, but I do have days where it’s not my first initial thought, then when it hits me, I feel like I am doing something wrong. I should be searching, reading, writing, calling, raising awareness at all times I guess is how I feel. I know full well that isn’t a reality and would end up wearing me out emotionally and physically in the end. It’s a helpless feeling that I’m sure you know too well, as well.

Our next appointment will be January for his MRI. Fingers crossed!

I_Promise

AshleyWF said:

Hi Cindy
Hi Cindy,

Thank you for the response. I will defiantly look more into why they say chemo would be unresponsive. To be honest, I think this is something I have asked, but I tend to forget things once we leave the cancer clinic. My brain can only hold so much I think. I have never understood what the harm in trying would be. I think they have mentioned it may be responsive but not in the way radiation would be, but then went on to explain how dangerous radiation in this location would be. Do you know if after surgery when they have the part of the tumor removed, if they actually test radiation and chemo on the sample? Or if it’s just in genetic that they figure this out?

I to admire Jordan’s and your sons strength in all this, I do believe though that Jordan’s is to a point of unhealthy denial. I have told myself though that, if this is how he can fight this and pull through strong in health and mind, then so be it. If and when the day comes that there is re-growth or expanding, he will have to face it, why not live life to the fullest now and fall back on us then, right? I just feel guilty when we let it go and live as if it’s not there, it is always in the back of my mind, but I do have days where it’s not my first initial thought, then when it hits me, I feel like I am doing something wrong. I should be searching, reading, writing, calling, raising awareness at all times I guess is how I feel. I know full well that isn’t a reality and would end up wearing me out emotionally and physically in the end. It’s a helpless feeling that I’m sure you know too well, as well.

Our next appointment will be January for his MRI. Fingers crossed!

Hi Ashley,
I don't know if this would help:

there is a vaccine pilot study against grade 2 (my sister is a grade 3, so we cannot use it): I found it on clinicaltrial.gov

Effects of Vaccinations With HLA-A2-Restricted Glioma Antigen-Peptides in Combination With Poly-ICLC for Adults With High-Risk WHO Grade II Astrocytomas and Oligo-Astrocytomas
This study is currently recruiting participants.
Verified on September 2011 by University of Pittsburgh

First Received on November 19, 2008. Last Updated on September 29, 2011 History of Changes
Sponsor: University of Pittsburgh
Collaborator: Oncovir, Inc.
Information provided by (Responsible Party): University of Pittsburgh
ClinicalTrials.gov Identifier:NCT00795457

also someone on this site told me about a new kind of surgery using Laser and heat for difficult inoperable spots:

http://visualaseinc.com/

Hope this may help.

I am like both of you: I am always thinking there is more I can do. Because let's face it "waiting" or the current options are just not good enough.

J.

Chris_W

Hi from Montreal
Hi Ashley

Your story struck a lot of chords with me. My tumour (and Oligo II as well) is in a precarious place, right against my right motor strip, and crossing the parietal / frontal lobe. I am at the Montreal Neurological Institute, seriously, one of the best neurological centres on the continent. I was told initially by one surgeon that my tumour was inoperable and then I met with Dr DelMaestro, and he said he could operate no problem - as long as I did awake surgery.

My operation was in November 2008, and the rehab was long, and still is. But, that's only because only 80% of the tumour was taken out (I would have been paralysed if they went further). They did do chromosome deletion tests on my tumour, and I did a lot of chemo until I developed severe reactions to it.

Dr Del Maestro works "outside the box", the man is a sheer genius. You could email him your questions and he will answer them - you could even send him a CD of the MRI and he'll email you back with an opinion. There's a lot of chatter on the internet about him, here is his hospital website http://www.mni.mcgill.ca/neuro_team/brain_tumour/delmaestro_rolando/

You don't need to look at the States for the best treatment, we have it in Canada too. My hospital has never been cheap on my treatment. I have friends in the States whose insurance companies denied them treatments that medicare takes care of no problems.

All my best

Chris

AshleyWF

Chris_W said:

Hi from Montreal
Hi Ashley

Your story struck a lot of chords with me. My tumour (and Oligo II as well) is in a precarious place, right against my right motor strip, and crossing the parietal / frontal lobe. I am at the Montreal Neurological Institute, seriously, one of the best neurological centres on the continent. I was told initially by one surgeon that my tumour was inoperable and then I met with Dr DelMaestro, and he said he could operate no problem - as long as I did awake surgery.

My operation was in November 2008, and the rehab was long, and still is. But, that's only because only 80% of the tumour was taken out (I would have been paralysed if they went further). They did do chromosome deletion tests on my tumour, and I did a lot of chemo until I developed severe reactions to it.

Dr Del Maestro works "outside the box", the man is a sheer genius. You could email him your questions and he will answer them - you could even send him a CD of the MRI and he'll email you back with an opinion. There's a lot of chatter on the internet about him, here is his hospital website http://www.mni.mcgill.ca/neuro_team/brain_tumour/delmaestro_rolando/

You don't need to look at the States for the best treatment, we have it in Canada too. My hospital has never been cheap on my treatment. I have friends in the States whose insurance companies denied them treatments that medicare takes care of no problems.

All my best

Chris

Thank you
Hi guys,

Thank you so much for the information. I will be looking into all of it. I am hoping this link that you have provided, Chris, will have a contact email for the doctor you are speaking of? Maybe just going out of Province for an opinion is a way better idea?

Would you mind telling me more about your awake surgery?


Ashley

Chris_W

AshleyWF said:

Thank you
Hi guys,

Thank you so much for the information. I will be looking into all of it. I am hoping this link that you have provided, Chris, will have a contact email for the doctor you are speaking of? Maybe just going out of Province for an opinion is a way better idea?

Would you mind telling me more about your awake surgery?


Ashley

Dr DelMaestro
Hey Ashley

His email is rolando.delmaestro@mcgill.ca You can even tell him that I suggested you write him (Christopher Wright). He knows me well.

His personal website is: (he has a lot of clients from overseas, the man has met the Pope!) http://www.delmaestro.org/rolando/Dr._Del_Maestro_Website/About_Me.html

Awake surgery terrified me (the dentist terrifies me, so this was 1000 times scarier). Dr DelMaestro put me at ease by telling me it was the safest way of doing surgery, and that he's operated on 7 year olds, and a 92 year old... I thought that if a 7 year old could do it, then so could a 37 year old!

I just didn't think of the surgery until the night before - just kept myself busy... I did a lot of reading on awake surgery and the more I read, the calmer I became. I asked a lot of questions, and then I became at ease with it. He warned that the biggest problem about awake surgery is boredom! He was sort of right, but the drugs that they give by I.V. make the time pass quickly. There are also people present who talked to me and had me do exercises. It was 9 hours long, and the only pain I had was at the very start when he started drilling - my scalp wasn't frozen enough, but that didn't hurt any more than a sore tooth. The rest of it was painless. It was uncomfortable lying in the same position for so long, but as I said - drugs help!

He is royalty in neurosurgery - nurses practically bow down to him. I was only supposed to spend 1 night in the ICU, but he insists his patients spend 4 nights because he is super careful about swelling and healing. He doesn't cut corners, I was VERY lucky to find him.

If you stay in Canada, at least medicaire would cover you... The patient's committee at the hospital could probably help you get a hotel discount.

Keep me posted! I'm seeing him in January after my MRI next month...