Oligodendroglioma
Comments
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Hi everyoneKanoki said:Still Here....
This is my first post as well so I will give you a little background first. I was diagnosed in September of 2003 with a grade II mixed Oligodendroglioma. I was given the option of doing nothing and taking a wait and see approach or being more aggressive and attempting to remove as much as possible with surgery. I chose the surgery option and they were able to remove about 2/3 of the tumor from my left frontal lobe. While I was on the table the surgeon spoke to my family and told them he could try to get the rest but he would have to remove so much good brain tissue that damage was likely and there was a large risk of me coming out of the surgery a different person. Fortunately my family made the right decision and decided against any further removal. I started Temodar in December of 2003 and continued that until February of 2006 with a lapse due to the onset of some severe side effects that required stopping treatment for about 4-5 months.
My doctors were going to do radiation therapy but at the last moment it was decided to hold off. My oncologist has been consulting with M.D. Anderson in Texas since my diagnosis and they actually recommended holding off on radiation due to the long term side effects in someone my age ( I was 34 at time of diagnosis)and the fact that radiation results apparently are a mixed bag when it comes to Oligo's.
I give you all that to say I am still well and the tumor remains stable. I am down to having MRI's every 6 months and it appears there has been no progression of the tumor at all after 7 years. I am so thankful that in my case we decided not to go with the radiation treatment. Like you, I do have the 1p-19q deletion and from what I am told that is a great prognostic factor and means the tumor will normally have a much greater response to chemo treatment.
I wish I could tell you the tumor was gone but unfortunately it is still there, just not doing anything. I have never had a seizure but in your case it sounds like you don't have much of a choice, 28 Gran Mals is obviously not something that can go unchecked. My best recommendation would be to talk at lenght to your doctor's and find out the pro and cons of the different available treatments and what your individual risk factors are. There is an awful lot of information out there on the web and a lot of it is conflicting and most of it can scare you to death. Take it with a grain of salt but keep looking as your best defense right now is arming yourself with information so that you know the questions to ask your doctors.
This is my first
Hi everyone
This is my first post so a little about whats goin on... I was diagnosed in March 2010 with Oligodendroglioma. I had no seizures or symptoms of anything being wrong. I had had an extremely bad headache one time on vacation in February that lead me to call my doctor because I never had a headache like that before. She suggested an MRI and luckily we caught it because without that MRI I would have never known anything was wrong. I had my surgery in April and had a surprisingly easy recovery. I am currently on Temodar 5 days on 23 off. Which again for the circumstances I feel lucky. The pills are convenient and easy to take and I dont have to go to the hospital at all. I have bloodwork done once a month and MRIs right now, every 3 months. For the most part I feel good day to day. Still a few things getting used to though even though its been a few months. Its just now becoming a little easier to have late nights like I used to and Im feeling ok now about going on trips. I have a few questions for everyone though.... Has anyone flown since theyve had surgery? I am to be going away with my boyfriend in about a week and despite the doctors saying everything will be/is fine, Im still nervous! Any input would be great! Also, from time to time I have anywhere from a day to a week of not feeling quite right. Such as being dizzy or just overly tired. Does anyone else feel like that? The tiredness doesnt bother me so much as the dizziness because sometimes I cant drive or go to work because of it. Any feedback?0 -
Flying after surgerystephaniejo said:Hi everyone
This is my first
Hi everyone
This is my first post so a little about whats goin on... I was diagnosed in March 2010 with Oligodendroglioma. I had no seizures or symptoms of anything being wrong. I had had an extremely bad headache one time on vacation in February that lead me to call my doctor because I never had a headache like that before. She suggested an MRI and luckily we caught it because without that MRI I would have never known anything was wrong. I had my surgery in April and had a surprisingly easy recovery. I am currently on Temodar 5 days on 23 off. Which again for the circumstances I feel lucky. The pills are convenient and easy to take and I dont have to go to the hospital at all. I have bloodwork done once a month and MRIs right now, every 3 months. For the most part I feel good day to day. Still a few things getting used to though even though its been a few months. Its just now becoming a little easier to have late nights like I used to and Im feeling ok now about going on trips. I have a few questions for everyone though.... Has anyone flown since theyve had surgery? I am to be going away with my boyfriend in about a week and despite the doctors saying everything will be/is fine, Im still nervous! Any input would be great! Also, from time to time I have anywhere from a day to a week of not feeling quite right. Such as being dizzy or just overly tired. Does anyone else feel like that? The tiredness doesnt bother me so much as the dizziness because sometimes I cant drive or go to work because of it. Any feedback?
I've flown a few times after surgery, but before I started Temodar, so I can't say much on how chemo affects travel or nausea. I can assure you though that the titanium plate in my skull doesn't show up on metal detectors at the airport. You'll be just fine!
PS- I was also lucky to have found my tumor. No symptoms except for a weird noise in my ear.... weird, huh?0 -
oligodendrogliomadannywf said:I also have oligodendroglioma
just wanted to know if you ever learned anything from anyone?
Hi, my name is Nikki Pernell. I was diagnosed with grade II Oligodendroglioma 4 years ago. I have had 2 surgeries and radiation. Do not give up hope with this one. The life expectation is how you look at it. I know that it a very rare tumor, and has 4 stages. I have learned many ways to deal with what to expect. Don't look back only look forward. Mine is in my speech and had a 90% resection for my tumor. I had to learn many things over, but I take it as it goes. I hope that is information is helping you. Don't feel like you are in this alone. You can always talk to anyone. Take care and hope to hear from you soon.0 -
First timer....stephaniejo said:Hi everyone
This is my first
Hi everyone
This is my first post so a little about whats goin on... I was diagnosed in March 2010 with Oligodendroglioma. I had no seizures or symptoms of anything being wrong. I had had an extremely bad headache one time on vacation in February that lead me to call my doctor because I never had a headache like that before. She suggested an MRI and luckily we caught it because without that MRI I would have never known anything was wrong. I had my surgery in April and had a surprisingly easy recovery. I am currently on Temodar 5 days on 23 off. Which again for the circumstances I feel lucky. The pills are convenient and easy to take and I dont have to go to the hospital at all. I have bloodwork done once a month and MRIs right now, every 3 months. For the most part I feel good day to day. Still a few things getting used to though even though its been a few months. Its just now becoming a little easier to have late nights like I used to and Im feeling ok now about going on trips. I have a few questions for everyone though.... Has anyone flown since theyve had surgery? I am to be going away with my boyfriend in about a week and despite the doctors saying everything will be/is fine, Im still nervous! Any input would be great! Also, from time to time I have anywhere from a day to a week of not feeling quite right. Such as being dizzy or just overly tired. Does anyone else feel like that? The tiredness doesnt bother me so much as the dizziness because sometimes I cant drive or go to work because of it. Any feedback?
I was diagnosed at the end of July with oligodendroglioma (stage 3) and I am so scared.. I read you post and it helped a bit.. I am 30 with 3 kids and worried to death.. I have not started the treatments yet. In the process of working up a plan of action. I will be starting radiation next week... After that I believe the plan is to start the Temador. Not 100% sure yet.. Unlike your case, I had a siezure and that is what sent me to the hospital. They thought that it was only high blood sugar (never had a problem with that before) but my husband and mom kept on them because I was complaining how bad my head hurt. I guess the whole fear of not knowing is what scares me the most. I look at the statistics and it does not look good. I am a fighter, but sometimes I wonder if I am strong enough for even this. I guess I am on here just looking for someone who knows emotionally what this is like..0 -
Take it one day at a timefiremanswifeofdb said:First timer....
I was diagnosed at the end of July with oligodendroglioma (stage 3) and I am so scared.. I read you post and it helped a bit.. I am 30 with 3 kids and worried to death.. I have not started the treatments yet. In the process of working up a plan of action. I will be starting radiation next week... After that I believe the plan is to start the Temador. Not 100% sure yet.. Unlike your case, I had a siezure and that is what sent me to the hospital. They thought that it was only high blood sugar (never had a problem with that before) but my husband and mom kept on them because I was complaining how bad my head hurt. I guess the whole fear of not knowing is what scares me the most. I look at the statistics and it does not look good. I am a fighter, but sometimes I wonder if I am strong enough for even this. I guess I am on here just looking for someone who knows emotionally what this is like..
My 17 year old son is a 1 year cancer survivor who was diagonised 7/29/09, Grade III astrocytoma/oligodendroglioma mix
He underwent surgery with 95% removal, 33 treaments of radiation, and 30 weeks of IV chemo.
He had his port removed June 2010 and is living a normal teenage life and back to playing football. He is amazing and we are inspired everyday by him. He has a tatoo that reads
Live for today, fight for tomorrow, LIVESTRONG. Emotionally it is hard not knowing but you really have to stay strong, beleive you can beat it and live everyday to the fullest.
My son now says statistics should not be on people, the variables change too much.
It's 50 % medicine and 50 % your mind. He has never once cried or complained about having cancer, so we as his family have to stay strong.
Surround yourself with strong family and friends. Let people help who offer, no one needs to go this alone. It helps others to be able to help you. I wish you peace and comfort in your treatment. The worst for my son was his throat was very raw from radiation.
You can do this, show your precious kids how strong mommy can be. Good Luck!0 -
Hello Friends
I had a seizure in Feb 10 and surgery August 5th with 95% removal of the tumor near the speech and motor areas where the Dr. woke me up to have me look at pictures and read to make sure he wasn't touching too much. I was able to get the best Neuro Surgeon in the world from UCSF to come and do it even though he was not on my insurance!! Afterward they found out it was stage II but I have about 5 Dr's in disagreement of what to do next. The radiologist insisted on that first and set me up for 30 treatments right away. Once my neurosurgeon found out about that he said no and that he and the Oncologist agreed to either watche it and have MRI's every 4 months or go ahead and start chemo for a year (5 pills a month). I am on Keppra and Dilantin due to a seizure while in the hospital after surgery. I was in the ICU for a week. Now am home recovering trying to keep my head up more and more. I am 45 with a husband and 2 teenagers - Not expecting this as we have a very busy lifestyle. The Dr's told me I shouldn't have the radiation now since I can only have it once and it would be better to have it later when it comes back in 10 years. Although the radiologist was extremely upset, we are thinking of just starting on the therapy. 3 of the Dr's said either watch it with regular MRI's or do just therapy now. Has anyone heard of only having radiation once? Now the decision is in my husband and my lap.0 -
Good morning...kwhipple said:Hello Friends
I had a seizure in Feb 10 and surgery August 5th with 95% removal of the tumor near the speech and motor areas where the Dr. woke me up to have me look at pictures and read to make sure he wasn't touching too much. I was able to get the best Neuro Surgeon in the world from UCSF to come and do it even though he was not on my insurance!! Afterward they found out it was stage II but I have about 5 Dr's in disagreement of what to do next. The radiologist insisted on that first and set me up for 30 treatments right away. Once my neurosurgeon found out about that he said no and that he and the Oncologist agreed to either watche it and have MRI's every 4 months or go ahead and start chemo for a year (5 pills a month). I am on Keppra and Dilantin due to a seizure while in the hospital after surgery. I was in the ICU for a week. Now am home recovering trying to keep my head up more and more. I am 45 with a husband and 2 teenagers - Not expecting this as we have a very busy lifestyle. The Dr's told me I shouldn't have the radiation now since I can only have it once and it would be better to have it later when it comes back in 10 years. Although the radiologist was extremely upset, we are thinking of just starting on the therapy. 3 of the Dr's said either watch it with regular MRI's or do just therapy now. Has anyone heard of only having radiation once? Now the decision is in my husband and my lap.
Actually, I have had radiation once. I had surgery - partial resection in August 2009 and then stereotactic radiosurgery in December 2009. My doctors kind of gave me a choice, I could have gone without it for a while - I have a grade II astrocytoma and it has been slow growing.
I am only 39 and have two boys and one of the things that really made me go ahead and move on was that the doctors had said that the stereotactic radiation could take months or even over a year to make any difference - I guess the progress on the tumor has to do with the speed of the growth of the tumor. So, I wanted to try to kick it in the butt before it decided to take off too fast.
The stereotactic radiosurgery wasn't fun, but it was just one day. For a few days afterwards I didn't feel too well, and I have been okay since. About a month ago, I started having some swelling in my brain, which was causing headache, pressure, nauseau, confusion.... and my doc put me on steroids (which I hate!). I have been fortunate in not having seizures. I do have some "absence seizures", which really just make me goofy for a while. Anyhow, my doc says that the swelling is a pretty normal reaction to the radiation from last year....nine months later. It kind of looks like I have a cloud over a quarter of my brain from the swelling and fluid and he has said that the steroids normally will control the swelling within a few months. The tumor has not changed yet. It is a little enhanced right now, but the doc did say that was probably from the swelling.
So, I don't know if the radiation was worth it at this point. My hopes are not down yet about it making a change in the tumor....I will be so excited one day when they say it has shrunk!
I don't remember my docs ever telling me that I could only have the radiation once, but it seems that with the concentrated level of radiation with the stereotactic radiosurgery that it is less likely that I will have the radiation again anytime soon. I believe it would have to be in a more urgent situation, such as a higher grade tumor that would respond more quickly to the radiation. I haven't had chemo or anything else yet, either.
I should be grateful and normally am, but steroids suck and make me feel bad.
Hoping strength and peace for you.....
Michele S.0 -
Michele S.tommybear said:Good morning...
Actually, I have had radiation once. I had surgery - partial resection in August 2009 and then stereotactic radiosurgery in December 2009. My doctors kind of gave me a choice, I could have gone without it for a while - I have a grade II astrocytoma and it has been slow growing.
I am only 39 and have two boys and one of the things that really made me go ahead and move on was that the doctors had said that the stereotactic radiation could take months or even over a year to make any difference - I guess the progress on the tumor has to do with the speed of the growth of the tumor. So, I wanted to try to kick it in the butt before it decided to take off too fast.
The stereotactic radiosurgery wasn't fun, but it was just one day. For a few days afterwards I didn't feel too well, and I have been okay since. About a month ago, I started having some swelling in my brain, which was causing headache, pressure, nauseau, confusion.... and my doc put me on steroids (which I hate!). I have been fortunate in not having seizures. I do have some "absence seizures", which really just make me goofy for a while. Anyhow, my doc says that the swelling is a pretty normal reaction to the radiation from last year....nine months later. It kind of looks like I have a cloud over a quarter of my brain from the swelling and fluid and he has said that the steroids normally will control the swelling within a few months. The tumor has not changed yet. It is a little enhanced right now, but the doc did say that was probably from the swelling.
So, I don't know if the radiation was worth it at this point. My hopes are not down yet about it making a change in the tumor....I will be so excited one day when they say it has shrunk!
I don't remember my docs ever telling me that I could only have the radiation once, but it seems that with the concentrated level of radiation with the stereotactic radiosurgery that it is less likely that I will have the radiation again anytime soon. I believe it would have to be in a more urgent situation, such as a higher grade tumor that would respond more quickly to the radiation. I haven't had chemo or anything else yet, either.
I should be grateful and normally am, but steroids suck and make me feel bad.
Hoping strength and peace for you.....
Michele S.
My husband also has had the partial resection -- 4.8cm to 5 mm. He did have his bone flap removed due to infection. Once that is replaced, the doc has mentioned possibilty of sterotactic radiation for him also.
However, I am wondering if Temodar is an option. My husband has to deletions and I have read this tumor is responsive to Temodar. Was that an option for you?0 -
Hello Stephaniejo.stephaniejo said:Hi everyone
This is my first
Hi everyone
This is my first post so a little about whats goin on... I was diagnosed in March 2010 with Oligodendroglioma. I had no seizures or symptoms of anything being wrong. I had had an extremely bad headache one time on vacation in February that lead me to call my doctor because I never had a headache like that before. She suggested an MRI and luckily we caught it because without that MRI I would have never known anything was wrong. I had my surgery in April and had a surprisingly easy recovery. I am currently on Temodar 5 days on 23 off. Which again for the circumstances I feel lucky. The pills are convenient and easy to take and I dont have to go to the hospital at all. I have bloodwork done once a month and MRIs right now, every 3 months. For the most part I feel good day to day. Still a few things getting used to though even though its been a few months. Its just now becoming a little easier to have late nights like I used to and Im feeling ok now about going on trips. I have a few questions for everyone though.... Has anyone flown since theyve had surgery? I am to be going away with my boyfriend in about a week and despite the doctors saying everything will be/is fine, Im still nervous! Any input would be great! Also, from time to time I have anywhere from a day to a week of not feeling quite right. Such as being dizzy or just overly tired. Does anyone else feel like that? The tiredness doesnt bother me so much as the dizziness because sometimes I cant drive or go to work because of it. Any feedback?
I had to write because your situation sounded so much like my 24 yr old son's case. He is an athlete and he was just never sick. On vacation in April 2009, he got a horrible migraine that would not go away. Dr dinked around, giving him painkillers, blood pressure medicine etc. (0ur oncologist was very critical of gp drs treatment, btw). Finally after 3 weeks, my son developed double vision and his gp finally authorized an MRI. We were terrified beyond description when we saw the MRI. He had a huge mass in his head, actually pushing his brain's midline to the side. No wonder he had such a bad migraine. So we were immediately referred to a wonderful neurosurgeon who made time in his schedule to do brain surgery on David the day after we found out about the tumor. The tumor itself, while pretty big, was only a part of the mass. It was encapsulated in a cyst, which I guess is common. It was diagnosed as an anaplastic oligodendroglioma. (Grade III) The surgeon got 100% of the tumor out, with absolutely no deficits in David. I thank God every night for that. The pathology showed that David did not have the gene deletion, which our oncologist told us is not good at all. But....God is bigger than all the doctors. I am so happy to be able to tell you that after brain surgery, 6 weeks of chemo and radiation, and now Temodar 5 days every month...David is doing wonderfully well. He gets better each day. When we go in for our 3 month MRIs, his oncologist says that his MRIs look better and better. The scar area in his brain is continuing to heal. It sure hasn't been a walk in the park, butI would like you to know that things can continue to improve. You have better days ahead! I didn't think we would ever get to where we are today....
Tomorrow is one of David's 3 month MRI/oncologist appts. I wish I could say that they get easier, but they do not. I have to pray for peace and strength before every visit. They terrify me. I hope and pray that I can get on this network tomorrow and say that his MRI is clear....
My son says that he does not believe that he is going to die any time soon and he refuses to live like he is going to die. He considers the 3 month appts as "checkups." He's an amazing man and I am so very proud of him. I believe that a large part of the reason he is doing so well is because of his strong, positive, fighting mental attitude. You are positive about your recovery---good for you! Hang on to that.
I hope that David's story encourages you even a little bit. I figured you went on that flight, but I did want to mention that David has flown a few times since his surgery and while he was on Temodar, and he had absolutely no problems. I hope that you had a great trip with your boyfriend!
Love, blessings, peace, and healing to you,
Cindy in Salem, OR0 -
Interesting...Carrie King said:Michele S.
My husband also has had the partial resection -- 4.8cm to 5 mm. He did have his bone flap removed due to infection. Once that is replaced, the doc has mentioned possibilty of sterotactic radiation for him also.
However, I am wondering if Temodar is an option. My husband has to deletions and I have read this tumor is responsive to Temodar. Was that an option for you?
I'll look into that. I have read a little about the deletions, but not sure if that applies to me. I wonder if my doc would know that off hand - it was never mentioned...4.8cm to 5mm is great! I can't remember exactly what size mine is right now, but they only managed to get out 25% of it. It wasn't huge - like the size of a large bing cherry maybe. It does have lovely extensions from what I understand though, that's what the problem was was the resection.
Thanks for bringing that to my attention about the deletions. I'll definitely have to do some research....
Take care....
Michele0 -
radiation and/or chemotommybear said:Interesting...
I'll look into that. I have read a little about the deletions, but not sure if that applies to me. I wonder if my doc would know that off hand - it was never mentioned...4.8cm to 5mm is great! I can't remember exactly what size mine is right now, but they only managed to get out 25% of it. It wasn't huge - like the size of a large bing cherry maybe. It does have lovely extensions from what I understand though, that's what the problem was was the resection.
Thanks for bringing that to my attention about the deletions. I'll definitely have to do some research....
Take care....
Michele
I just wanted to share what we chose for David's treatment options. We got 3 different opinions. David (my 26 year old son) had an oligodendroglioma, grade III, without the gene deletions. We went to Fred Hutchinsons in Seattle and they told us to do radiation OR chemo, but not both. They said to save one of those treatments for when (not if, thanks a lot for that) the tumor returned. Said that we should not use up both of our best weapons right off. We came back and told our original oncologist what Hutchinsons had said, and he was not happy. He said that he really, really wanted us to do both, and he did not feel that we had the option to do just one, especially since it was a grade III without the gene deletion. He also said that the combined treatments had a synergistic effect...they amplified each other's effectiveness. So we were in so much turmoil. We decided to get a third opinion...from UCSF. They agreed that we should do both, so we did.
Every case is different, but I just wanted to share our experience. One of the hardest things for me personally is how all these experts--the best of the best in this field--don't agree about so many things. I guess it just goes to show you that no one really knows for sure...they don't know what is the best treatment, and they don't know what the final outcome will be. And they sure don't know when anyone will live or die.
For what it's worth...if we were closer, I think we would be going to UCSF. I was very happy with the way they treated us, and they have an outstanding reputation.
Love and blessings and peace to you,
Cindy in Salem, OR0 -
How are you doing?lauraatvalley said:I posted for the first time yesterday about my Oligodendroglioma experience and I wanted to update to say I had my annual MRI this morning and I have a new tumor measuring 3 cm. I just got the report and have no idea how to deal with this. If anybody else has or know of anyone who has had a recurrence of a grade II oligo, please let me know. I am scared but am trying to be upbeat until I meet with the doctor on Friday.
Hello, Laura.
I have been very sporadic about checking this site. I am wondering how you are doing since this last post. I hope that things have improved and you are doing good.
I don't know if this helps or not--I hope it does. I've read that 90%+ of cancer survivors have a recurrence at some point. They battle through it and go on. No one wants a recurrence but it doesn't mean the end...it means a different weapon and a different direction to attack from.
I hope you are strong and are fighting hard. My thoughts and prayers are with you. Please post and let me (us) know how you are doing.
Love and blessings,
Cindy0 -
MRI: Clear!!!cindysuetoyou said:radiation and/or chemo
I just wanted to share what we chose for David's treatment options. We got 3 different opinions. David (my 26 year old son) had an oligodendroglioma, grade III, without the gene deletions. We went to Fred Hutchinsons in Seattle and they told us to do radiation OR chemo, but not both. They said to save one of those treatments for when (not if, thanks a lot for that) the tumor returned. Said that we should not use up both of our best weapons right off. We came back and told our original oncologist what Hutchinsons had said, and he was not happy. He said that he really, really wanted us to do both, and he did not feel that we had the option to do just one, especially since it was a grade III without the gene deletion. He also said that the combined treatments had a synergistic effect...they amplified each other's effectiveness. So we were in so much turmoil. We decided to get a third opinion...from UCSF. They agreed that we should do both, so we did.
Every case is different, but I just wanted to share our experience. One of the hardest things for me personally is how all these experts--the best of the best in this field--don't agree about so many things. I guess it just goes to show you that no one really knows for sure...they don't know what is the best treatment, and they don't know what the final outcome will be. And they sure don't know when anyone will live or die.
For what it's worth...if we were closer, I think we would be going to UCSF. I was very happy with the way they treated us, and they have an outstanding reputation.
Love and blessings and peace to you,
Cindy in Salem, OR
I was just rereading the posts on this topic and I see that I didn't post here in this topic, that David's MRI was totally clear. No growth, no changes, nothing there except the cavity that the tumor/cyst left, and some scar tissue. I am thanking God every night, on my knees, with lots of tears, for this good report.
I believe with all of my heart, that if this can happen for us, it can happen for you. We were given such a bad prognosis. The dr and his staff are really pleased with how good David is doing. I think they are surprised. I know this isn't what they expected.
We don't know what the future holds, but we are learning to take each day, one at a time, and to be grateful for the time we have.
I pray for all of you on this board, every night, that God will bring peace and strength to all of you who are fighting cancer, and all of us who have loved ones who are battling. Please stay strong and hold on hard to hope.
Love, blessings, peace, and healing to you,
Cindy in Salem, OR0 -
This comment has been removed by the Moderatorcindysuetoyou said:MRI: Clear!!!
I was just rereading the posts on this topic and I see that I didn't post here in this topic, that David's MRI was totally clear. No growth, no changes, nothing there except the cavity that the tumor/cyst left, and some scar tissue. I am thanking God every night, on my knees, with lots of tears, for this good report.
I believe with all of my heart, that if this can happen for us, it can happen for you. We were given such a bad prognosis. The dr and his staff are really pleased with how good David is doing. I think they are surprised. I know this isn't what they expected.
We don't know what the future holds, but we are learning to take each day, one at a time, and to be grateful for the time we have.
I pray for all of you on this board, every night, that God will bring peace and strength to all of you who are fighting cancer, and all of us who have loved ones who are battling. Please stay strong and hold on hard to hope.
Love, blessings, peace, and healing to you,
Cindy in Salem, OR0 -
bassystaceyunknown said:This comment has been removed by the Moderator
My husband was diagnosed in March at 36 yrs old- go read my Don't get discouraged post.
We originally weren't given the best prognosis, however he proved them wrong.
His scan was also clear (we just got the news on Wednesday) !
Don't give up !0 -
Hello!unknown said:This comment has been removed by the Moderator
Hi, Stacey.
I just read your "about me" section. I just wanted to make a comment about your treatment with radiation, and not doing chemo ....
You mentioned two things that I think are very important positives. One, that your tumor was a grade two. (David's was a grade 3.) And that you had the gene deletions. (David does not have the gene deletions.) Those are two very important factors in your favor. In your comments, I read that you had radiation with no chemo and you hoped that it wasn't the wrong thing to do. If David's tumor would have been a grade two with the gene deletion, we would have done radiation or chemo, but not both. Our doctor was letting us pick which treatment we would do...until the FISH report came back and showed no deletions. After getting the report, our dr. very strongly recommended that David do both because of the grade and the lack of the gene deletion. We got a second opinion from Fred Hutchinsons in Seattle, and they thought we should do one or the other, but not both. So that was very hard for us....we ended up getting a third opinion from the University of California at San Francisco, and they also thought that David should do both, so that's what we finally decided to do.
A side note.....here's what happened to us when we first started on this journey: when David's tumor was removed, the neurosurgeon warned us that nothing was for sure until we got the pathology report, but the frozen slides showed that it was a benign tumor and David wouldn't need any further treatment. We were all so overjoyed and happy! Laughing and crying and hugging each other in the hospital's waiting room. We went home from the hospital five days later, and we planned a huge bbq with all of our friends and family to celebrate the good news. Two days before the party, I called to confirm our appointment time to go over the pathology report and they told me that we didn't even have to go up to Portland (an hour drive) to get the results. We could just call the next day and they would talk to us over the phone. The next day, (the day before our party) we called the first thing in the morning--put it on loudspeaker so all of us could hear the good news--and they said to come up to Portland immediately. We begged them to tell us why but they would not....they said that we needed to meet with a doctor. We hung up, and David and all of us (my husband, our 3 other kids) started weeping. We knew it was bad. So we went up there and they told us and it was the worst thing that ever happened to any of us.... that they were sure we would lose David in the very near future.
Well, I won't go into all the details but I will say that the first part of all of this "new normal" life was very, very hard. We were all brokenhearted and terrified for David. (I cried every single day for over a year...by myself in the shower, in bed at night, when I was alone in the car, out in the woods when I was riding my horse....but not in front of David.) But little by little, we went forward, and he recovered from the surgery, then he did the radiation and recovered from that (took a little while) and now he's doing Temodar and he is learning how to deal and cope with that. And in the meantime, I am reading about more and more people who are beating the odds and surviving....and living well.
I just wanted to tell you that for us, it got a lot, lot easier. The first 9 months were just so hard...so many unknowns. I did not believe it would get better. I just thought that things would go downhill, but it hasn't been like that at all. It's so much better now. I cannot believe, looking back a few months ago, how far we have come. I hope that hearing this from me will help you and give you some encouragement.
I believe that it's critical to keep as positive as possible and to keep a fighting mentality. David said that he does not believe that he is going to die any time soon and he is not going to live like he is going to die soon. He went back to school for his Bachelor's degree and he moved up to Portland and he's back at work (part time) and he's riding his bike all over, and working out at the gym and playing basketball and doing things with his friends and family. Just living life...with a lot more appreciation.
I'm grateful for our doctors and the nurses and all the high tech stuff that they can do, but I am putting my trust in God. I thank Him every night for how good David is doing. I believe with all of my heart that His hand is on David and He is preserving David's life. I am so grateful for God's mercy and grace on David and on our family.
I've been thinking of you and praying for you, Stacey. I hope that hearing about David and what we have experienced and where we are now will be at least a little encouraging to you.
Love and blessings and peace and strength and healing to you,
Cindy0 -
This comment has been removed by the Moderatorcindysuetoyou said:Hello!
Hi, Stacey.
I just read your "about me" section. I just wanted to make a comment about your treatment with radiation, and not doing chemo ....
You mentioned two things that I think are very important positives. One, that your tumor was a grade two. (David's was a grade 3.) And that you had the gene deletions. (David does not have the gene deletions.) Those are two very important factors in your favor. In your comments, I read that you had radiation with no chemo and you hoped that it wasn't the wrong thing to do. If David's tumor would have been a grade two with the gene deletion, we would have done radiation or chemo, but not both. Our doctor was letting us pick which treatment we would do...until the FISH report came back and showed no deletions. After getting the report, our dr. very strongly recommended that David do both because of the grade and the lack of the gene deletion. We got a second opinion from Fred Hutchinsons in Seattle, and they thought we should do one or the other, but not both. So that was very hard for us....we ended up getting a third opinion from the University of California at San Francisco, and they also thought that David should do both, so that's what we finally decided to do.
A side note.....here's what happened to us when we first started on this journey: when David's tumor was removed, the neurosurgeon warned us that nothing was for sure until we got the pathology report, but the frozen slides showed that it was a benign tumor and David wouldn't need any further treatment. We were all so overjoyed and happy! Laughing and crying and hugging each other in the hospital's waiting room. We went home from the hospital five days later, and we planned a huge bbq with all of our friends and family to celebrate the good news. Two days before the party, I called to confirm our appointment time to go over the pathology report and they told me that we didn't even have to go up to Portland (an hour drive) to get the results. We could just call the next day and they would talk to us over the phone. The next day, (the day before our party) we called the first thing in the morning--put it on loudspeaker so all of us could hear the good news--and they said to come up to Portland immediately. We begged them to tell us why but they would not....they said that we needed to meet with a doctor. We hung up, and David and all of us (my husband, our 3 other kids) started weeping. We knew it was bad. So we went up there and they told us and it was the worst thing that ever happened to any of us.... that they were sure we would lose David in the very near future.
Well, I won't go into all the details but I will say that the first part of all of this "new normal" life was very, very hard. We were all brokenhearted and terrified for David. (I cried every single day for over a year...by myself in the shower, in bed at night, when I was alone in the car, out in the woods when I was riding my horse....but not in front of David.) But little by little, we went forward, and he recovered from the surgery, then he did the radiation and recovered from that (took a little while) and now he's doing Temodar and he is learning how to deal and cope with that. And in the meantime, I am reading about more and more people who are beating the odds and surviving....and living well.
I just wanted to tell you that for us, it got a lot, lot easier. The first 9 months were just so hard...so many unknowns. I did not believe it would get better. I just thought that things would go downhill, but it hasn't been like that at all. It's so much better now. I cannot believe, looking back a few months ago, how far we have come. I hope that hearing this from me will help you and give you some encouragement.
I believe that it's critical to keep as positive as possible and to keep a fighting mentality. David said that he does not believe that he is going to die any time soon and he is not going to live like he is going to die soon. He went back to school for his Bachelor's degree and he moved up to Portland and he's back at work (part time) and he's riding his bike all over, and working out at the gym and playing basketball and doing things with his friends and family. Just living life...with a lot more appreciation.
I'm grateful for our doctors and the nurses and all the high tech stuff that they can do, but I am putting my trust in God. I thank Him every night for how good David is doing. I believe with all of my heart that His hand is on David and He is preserving David's life. I am so grateful for God's mercy and grace on David and on our family.
I've been thinking of you and praying for you, Stacey. I hope that hearing about David and what we have experienced and where we are now will be at least a little encouraging to you.
Love and blessings and peace and strength and healing to you,
Cindy0 -
Fantastic!unknown said:This comment has been removed by the Moderator
That is such wonderful news, Bassystacey! I have been checking this site every few days to see how you are doing. I've also been praying for you every night too. I am just so happy to hear that your tumor is shrinking!!!
Please let us know what you decide about the chemo. We didn't have an option in our situation....David's was a grade III without the gene deletion, and our doctor STRONGLY advised us to do chemo AND radiation. I am glad we are doing that. I agree...we want to fight with every weapon at our disposal and kick --- too! BTW, I don't know what type of chemo you would take, but if it's Temodar, you stand a good chance not to lose any more hair. David lost his hair during radiation but it came back even though he never stopped taking the chemo.
Keep fighting hard and keep being positive!
Love and blessings to you,
Cindy in Salem, OR0 -
Yay! Shrinkage!unknown said:This comment has been removed by the Moderator
Stacey,
Good to hear about your Oligo shrinking. Just like you, I'm young and have a grade II Oligo with the co-deletion... plus I'm also single and live in Illinois (Chicago though, which I know is way different from Carbondale). Sounds like the radiation is already doing the trick, but I'll agree with cindysue to say that if you do Temodar, you won't lose hair. Co-deletions respond well to Temodar, or so my doc says. But Temodar + radiation can result in hair loss, I think.
I'm just on the Temodar (round 5 for November), and I've never had hair loss. Because of the size of my tumor (look in my expressions if you want to see how big it was before surgery), I can't do radiation because it would do too much harm to good brain cells. I have another scan at the end of this month, so here's hoping my results are as good as yours!
Good thoughts and vibes to everyone on here, including cindysue. I like hearing good news about your boy.
Jenny in Chicago0 -
Tumor shrinkingunknown said:This comment has been removed by the Moderator
Stacey- My husband also has Oligo, Stage 2. After two craniotomies, infection surgery and then bone flap removal, MRI doesn't show any sign of tumor. We are getting a second opinion to see if they recommend Sterotatic Radiation incase they are any "hidden tumor" in the healthy brain. How many radiaiton treatments did you do? Was it Sterotatic radiation?
You are an inspiration !0
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