Anaplastic Oligodendroglioma Grade 3

Radiation

Goodmorning Sadin,

   It's been awhile since I have been on the site. Benjamin is doing fantastic, his team of doctor's deemed him cured, but will still do 6 month

followups.  He is the same kid his has always been, fun loving, active, working and living life to the fullest.

   Now, I absolutely know how you feel about radiation, when Ben was first dx, we were told radiation could only be used once in his

treatment- so he was on 6 weeks radiation, along with temador, and then large dosage of temador for 6 months. He came through

both with flying colors, only side effect was a little hair loss at his temples, which has grown back since.

    I am amazed that your treating facility would be doing radiation for a third time possibly- I would question why, and how severe

your husband will be effected.  Sounds like he has suffered a few effects from previous, each time radiation is used, physical handicaps

beccome another obstacle to overcome.  How does you husband feel about possibly receiving more radiation?  It's his

quality of life that will be effected .  As a caregiver, I am sure you are there for the long haul, know matter what the outcome., but it

sure would be nice to get advance warning of what if's, to help organize you household and prepare for the future. I know this is

never a possibility in the medical field, but if the oncologist and neurologist have seen enough cases, there should be some insight to

share.  Ben's radiologist is well published, and very, very good at what he and his team plan for each patient.  Even though Ben has

been done with his treatment , his radiologist still likes to see him every 6 months, mostly to check for any side effects that may

have accured.  Have you discussed with your husband's radiologist, the possibily of a third round of radiation. and what the benefits

would be toward the quality of life?

    Do you have the option of a second opinion, if neuro is question whether there is a tumor is present or not, with modern

technology, you would think there is a way to check that tumor out.  I have always been told by Ben's Oncologist that cancer

glows bright green on the MRI - have you seen you husband MRI's ?  We look at everyone of Ben's MRI's, and his you can stack

one on top of each other for three years and they are all the same- clean.

   Hopefully, I have given you  enough information to think about moving on to the next course of treatment, wish you all the best

in whatever direction you are headed.  It is not easy when dealing with cancer and the fight is the hardest fight ever.

    Please know you will be in my prayers for courage and strength to carry you through each and everyday.

 

((((HUGS))))

Carol

 

I am here for you

Sadin, Sorry I took days to check-in back. I am very relieved to hear you took my expericne positively and I am happy to hear your "WILL" s:-). I don't know I can post my email.phone number because I am willing to share my exp.My husband had similar symptoms, he had very minute seizures (they call it "spells" because it was like a few seconds blankout feelings). My husband had lots of will power and he kept workigng fulltime as a finace manager for the city.Even though his NO was willing to write note to take disabilty, he wanted to work. When temodar stopped working for him, doctors at Mayo forcefully requested him to stop working. I was always asking him how he performs at work because I started noticing he was loosing his sharpness and I had to repeat many things. My husband would always say nobody is saying anything at work and he knew how to manage his weakness (he had a reserved/quite personality and I just let it go). but, after he was very sick, his boss called and I asked "was Jacob doing ok at work for the last year" and he said everyone noticed his perfomance was going down but the staff decided not to let him know because he was highly repected at work. I am breaking down as I write it. He knew he would be getting weaker and asked me to step in. I did for almost a year, as he stayed home and I worked full time to keep the best insurance. I come home and he would make me a coffee.I knew he was getting weaker and weaker I was ready to take care of him .He or I never thought a brain hemmorhage would happen to him. Hs cancer cells were oozing blood for more than a year. We were taking MRI at every 6 or 3 months at that time and most of the blood would be absorbed by the brain and he was fine. Now I know he was the worst candidate for Avastin. But, as my sons lovingly remind me that we were helpess as the tumor was growing with no other choice. Oh, i miss him alot. Sadin, keep do your WILLs.

Carol,

You know how blessed Benjamin to have a mother like you; caring and not taking the good times for granted. Your son is so young and age has a lot to do it. I believe until we figure out what causes brain tumor,there is no point to comapre one to another. There are lots of people out there 20 ,50 years after diagnosing. So , don't worry. do your duty as mother and enjoy your son. I was also very intentional in my life as a wife because of brain tumor, but I feel like I took it for granted in the early years because my husband acted like he had nothing and took temodar pills as he was taking vitamins.

To answer your questions, yes he had deletions and that is why the doctors said he responded to chemo ( temodar) very well for a long time. He never had surgery becasue his tumor was on the left frontal lobe where the brain controls the thinking and emotional functions and noone recommeded a surgery (we consuted many doctors and I am happy we didn't do a surgery because when the tumor spreaded , he started losing cognitiveness which telling me removing the the tumor area might have resulted in a similar result.

food for thought:

My husband was little stuborn in his personality and didn't believe in any treatment other than conventional. I sometime wonder,the long term usage of chemo which I consider as poision to the body might have been minimized if he went through some hollistic /natural ways to purify his blood/organs. When my husband was doing well, he and his  NO would smile and brush it off whenever I brought up these kind of topics.When I lovingly remind him not to eat fatty stuff like steak, he would smile and say "let the man eat and be happy while he lives(he loved food and ate pretty healty!). he joked at stories I bring up where people with cancer go through extreme diet.  I don't know how much difference it would have made, but I wonder what else I would have done for him. I would keep wondering for the rest of my life, I guess!!

Please let me know if any way I could be a small comfort to you both in your jouney.

with love

Raani

 

 

sadinholland said:

Thank you both!!

I am so thankful for your communication with me. After Cindysue left this site, I didn't see anyone on here that was here during that time anymore. I know many of them/their loved ones posted they lost their battles. Just hearing from someone that knows what we are going through is a comfort.

 

As far as my husband, he went through the surgery,considere 100% resection and the temodar, all that in 2010 along with being on the maintenance chemo. He had good scans until 2013 and thats when he had gamma knife. After gamma knife he was put back on Temodar. The tumor showed signs of growth on one of his 6 month scans after gamma knife so they switched his chemo to CCNU and after 5 months there was barely signs of his tumor. All during this time my husband never had a seizure or signs of regrowth. Actually my husband has never had a seizure at all. His initial sympton was headaches. And after his surgery in  2010 he went back to work for 2 years after being off for 6 months. The tumor was so small after 5 months of CCNU that it was barely showing on the MRI. His doctor wanted him to go ahead and do the last dose of CCNU in hopes it would get rid of that itty bitty spot that we could barely see. We went back 6 weeks after his last dose and the MRI showed an area that they were unsure of. A different area than the one that was being treated with the CCNU. His doctor said he would review it with the tumor board and give us a call. The call came 4 days later and the tumor board determined it was not tumor but results from treatment. So no more chemo and come back in 2 months. We were relieved it wasn't tumor. We go back in 2 months and there that same area shows up again, but a little bigger. This time his doctor says it wasn't results from treatment because there was growth so back on chemo and this time Etoposide. So here we are, he is now doing his two months of Etoposide then we will return to for another MRI.

He has only one deletion. His doctor gave him 3 to 3 1/2 years initially then changed it to 5 years. We are 4 years and 3 months into this. Please pray for us. I thing as far as the initial treatment, it is standard, providing the tumor is in a safe area to operate. Raana, God sent you to this site just when I needed you most! I appreciate both of you taking time to respond and share with me. Thank you and God Bless.

 

 

Hello

Hi Sadinholland, Carol, and Raani. 

How are you all doing today? I hope and pray you are all doing well.

I haven't been here in a long time. Even now it's hard. I read words like carboplatin and Avastin and my heart starts pounding and I feel sick to my stomach. And that's after almost 2 1/2 years.

Two things I come back to...One: I wonder if the treatment or the cancer killed David. I think it was a combination of both. Avastin in particular was terrible for David. He crashed downhill after it, right before our eyes. And Two: we didn't have any choice. The powerful drugs like carboplatin and Avastin were his only hope. If we had to do it over, we would have done the same thing. We fought with the only weapons we had. We made the best decisions we could with the options that we had. 

I would love to hear from you, and to know that your life has good things in it still. 

Love and blessings, always

Cindy 

in Salem, Oregon

 

 

 

 

sadinholland said:

Cindysuetoyou Hello!

So good hearing frm you! I think of you often. I would imagine it is still hard for you. It seems unreal that it has been 2 1/2 years. You know all we can do is our best. We have to believe the information the doctor gives us is the right information. My husband's recurrence is stable right now. He just completed 6 cycle of chemo, we go back in 3 months for his MRI. This is his first break from it since his gamma knife in 2013. I'm just trying to hang in there,trying not to be stressed. You helped me in so many ways and I want to thank you for that. I will keep you in my prayers! I hope you are still riding! God Bless!

Hello again

Hi, sadinholland. 

I still feel like my life has been broken because of David's death. But I have also had a lot of blessings showered down on me. I now have five grandchildren that I love so much. And after 35 years of marriage, my husband made a dream of mine come true...we rented out our suburban home and moved out of town onto nine acres in the country. It's my little piece of Heaven. We are up on a hill with a half acre of forest behind us, and our land slopes down to our lower pastures and a seven stall barn. I have three horses now. And three goats, 24 chickens, three dogs and a cat. Our home is such a solace and a place of peace for me.

I ride all the time...at least when I'm not working. I started a new job about a year after David died. I'm working with autistic high school students. It's very hard, very challenging, and so very rewarding. I'm off work during the summer, so I have lots of time for horse camping and riding. Nothing "fixes" my heart but I do feel a measure of peace when I'm out wandering in the woods. 

I'm considering going to a meeting of "Compassionate Friends" this Tuesday. It's a national support group for people who are grieving the loss of a child. I think it might help me to be with people who understand what I'm feeling. In my circle of family and friends, I get the feeling that they are all moving on. But I'm not. Even my husband does not want to talk about David. It's just not how he feels he will heal. I understand, but I need to talk about David and how I'm feeling. 

 

Anyway, enough about me. I am SO GLAD that your husband's dr has given an extended prognosis for your husband. I still believe that each day is a day closer to another treatment, another cure. How is your husband feeling in general? Is he feeling well enough to be out and about and doing things? And how are you doing? You have been a caretaker for a long time. It is so wearing to always be worrying and caring and helplessly loving someone for so long....I hope you are doing well!

 

Thank you again for thinking of me.

Love and blessings always, 

Cindy in Salem , OR

cindysuetoyou said:

Hello again

Hi, sadinholland. 

I still feel like my life has been broken because of David's death. But I have also had a lot of blessings showered down on me. I now have five grandchildren that I love so much. And after 35 years of marriage, my husband made a dream of mine come true...we rented out our suburban home and moved out of town onto nine acres in the country. It's my little piece of Heaven. We are up on a hill with a half acre of forest behind us, and our land slopes down to our lower pastures and a seven stall barn. I have three horses now. And three goats, 24 chickens, three dogs and a cat. Our home is such a solace and a place of peace for me.

I ride all the time...at least when I'm not working. I started a new job about a year after David died. I'm working with autistic high school students. It's very hard, very challenging, and so very rewarding. I'm off work during the summer, so I have lots of time for horse camping and riding. Nothing "fixes" my heart but I do feel a measure of peace when I'm out wandering in the woods. 

I'm considering going to a meeting of "Compassionate Friends" this Tuesday. It's a national support group for people who are grieving the loss of a child. I think it might help me to be with people who understand what I'm feeling. In my circle of family and friends, I get the feeling that they are all moving on. But I'm not. Even my husband does not want to talk about David. It's just not how he feels he will heal. I understand, but I need to talk about David and how I'm feeling. 

 

Anyway, enough about me. I am SO GLAD that your husband's dr has given an extended prognosis for your husband. I still believe that each day is a day closer to another treatment, another cure. How is your husband feeling in general? Is he feeling well enough to be out and about and doing things? And how are you doing? You have been a caretaker for a long time. It is so wearing to always be worrying and caring and helplessly loving someone for so long....I hope you are doing well!

 

Thank you again for thinking of me.

Love and blessings always, 

Cindy in Salem , OR

Wonderful to hear from you!

Cindy,

    How great to hear from you- I haven't been on this site for awhile, so many different people.  I join a site on FB- called Brain Tumors- and one

for Oli's.  They have been interesting, covering more topics, latest treaments from around the world.  Benjamin is still cancer free, living life to the

fullest, planning his future, where I think for awhile he didn't look forward.  His last MRI in November, both his Radiologist and Oncologist told him

to consider himself cured.  They are going to follow hin every 6 months until the 5 year mark, then he will be seen every year after for life.  I thank

the agressive treatment plan, top knotch doctor's from Roger Maris, Mayo and John Hopkins.  We have been so blessed !

    5 Grandchildren, your family must just come alive at the holidays and get togethers.  It doesn't seem like 2.5 years since David  has been

gone- feels like yesterday.  I am with you on how you feel, its hard to loose someone, my parent's and older brother have been gone over

twenty years and still think about them and miss them family get togethers.  My twin brother passed away, due to medical mishandling, I felt

like a piece of me just dropped from this earth. I was the one who had to handle all the arrangements, and to this day if it wasn't for my husband

and kids holding me together , I would have been in pieces.  I only have two sister's left in my family and they are 20 plus years older than me, and

both not doing so hot lately.  I just developed a routine that I do daily and stay really busy with volunteering, church, and work.  Neighbor's and friends

are wonderful sources of comfort. It's living in the country the best, we have been in the country for over 36 years now- love the peace, trees and nature. 

Your little hobby farm sounds lively and enjoyable!

    On the bright side, I am going to be a grandma again in 2 weeks, another little girl, so excited so we will have a Lily Jane and Ella Kaye.  Uncle Ben,

has spoiled Lily to the max, and he loves all those hugs and kisses.  It's the little things in life that are the most rewarding and heartfelt, I don't take anything 

for granite. 

     Please stay in touch, so great to hear from you!

 

(((HUGS)))

 

Carol