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Anaplastic Oligodendroglioma Grade 3

sadinholland
Posts: 248
Joined: Apr 2011

My short version of my husband's fight My husband was DX July 2010, standard treatment. Had gamma knife in July 2013 for small area along with Temodar . Showed signs of progression while taking Temodar after 3 months so they put him on CCNU. After 6 months of CCNU that area cleared but another area appeared and the doctor recommended more radiation like he had in the beginning of his treatment. I was very concerned about the radiation because this would be the third radiation treatment. After meeting with the tumor board they say they are not 100% sure it is tumor and it may be results from treatment. The doctors decided to not do anything at this time and do another MRI I. 6 weeks, then meet with the radiation doctor along with the medical oncologist. Makes me wonder though, why they made the radiation appt. Guess they are planning to do the radiation if this is indeed a recurrence. I am very concerned about more radiation and what it will do to his quality of life. He does ok right now. He gets tired and takes a nap. He has some short term memory issues. My fear is this third radiation treatment will cause more memory issues and other problems as well. When I asked the doctor what this area of the brain controls he told me I don't need to be concerned about that, we need to concentrate on treatment. I totally disagree. If treatment is going to destroy my husband's quality of life as it is today, I think I have the right to know. My husband says he is doing whatever the doctor recommends. Has anyone else had this much radiation? Please help!

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

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

 

sadinholland
Posts: 248
Joined: Apr 2011

Carol, 

Good to hear Ben is doingg so well. His team if doctors really know what they are doing. That's a wonderful blessing. My husband's doctor said I shouldn't worry about the radiation effects and concentrate on my husband's next treatment, but I feel as you said, I want to be prepared for what may be to come. Thank you so very much for the information. you have supplied me with very good information and advice and I'm going to use every bit of it! We get to see my husband's MRI on the screen but it not lit up. It's like an ex ray type picture and they show us the enhancement area they feel is a concern. I'm going to call Duke for a second opinion. I hear they do them over the phone. Thank you so much Carol and I will continue to pray for Ben as well! God Bless

sadinholland
Posts: 248
Joined: Apr 2011

Well good the good news is they are holding off the radiation for now. His doctor says it is ok to repeat radiation after 2 years but I'm still skeptical. I want his quality of life to be good for him. The bad news is it is tumor growt. 1.6 cm total, including the growth from 2 months ago that they said they weren't 100% sure it was tumor, felt like it was more results from treatment . He is now on Etoposide for two months and then we go back. Praying this chemo will help! Pleas keep us in your prayers! If there is anyone out there with experience with this chemo or with a second round of radiation, I would like to hear your story.

 

God Bless!

Raani01
Posts: 70
Joined: Mar 2011

Hi  Sadin,

 I don't know why I felt like login after more than a year. I have this feeling I should share my story to you. I am not sure anyone remember my husband's journey. We found out when he had Oligodendroglioma level 1 stage in 1997 and God took him home in 2012. The first treatment was radiation for us.

Actually our brian tumor jouney really  started in 2008 , the level changed to 3 by that time. Before that, it was MRI every year and temodar for 6 months whenever his tumor cells acts up in the MRI. He was fully functional and it was not inteferring with our life much. In 2008, tumor became stuborn and the NO put my husband on temodar on low dose and it kept the tumor at bay from 2008 till december 2010.Then the tumor started to resist the temodar and they put him on CCNU for 6 months. In December 2011 he had to go through a surgery to remove some fluid/blood  build up and he recovered from it better than everyone expected. Every one was happy and  in January 2012, they gave him  Avastin. and unexpectedly he had a brain bleed at the hispital and he lost all his congnitevenss.He never recovered.

It is been just over 2 years since and I am still struggling to live a life without HIM by my side. Sadin, I belive your husband is in a much better position than mine in 2008. Because my husband had a long years of Temodar treatments which made the cells so weak and caused the blood buildup.Also, the tumor regrew at the same location and we were told he couldnot have any more radiation. Since the tumor regrew in a different location, the situation may be different in your husband's case. I believe that in the brain tumor world, no two people reacts to the same treatment in the same way. We all try our best in the situation we are in. I asked the NO why we put him on Avastin when we know his tumor cells were oozing blood as we know the side effect of Avastin is bleeding, he told me there is no other treatments and without taking that risk, we are letting the tumor grow (The NO never mentioned Etoposide and I haven't learned in my research!). At that time our family let the doctor to make the final call. Even though I know the doctor did his best according to his knowledge, I sometimes wonder!! So,  write a journal, research, talk to people and be top of everything...do the best.

Now, I am going to talk my mind as I wished someone did to me. Everyone was protecting me by not bringing up any conversation around brain tumor:My intent is to make you think and learn from my life,if there is anything to learn from.

Today, sometimes, I feel like I spent all my energy to find out the best treatments for  my husband than enjoying every moment with him. I feel like I never paid attention to my feelings while we were going through the fighting time to keep him by my side longer (my kids comfort me that was the right thing to do!), I am not regretting it, sometimes I feel sad I didn't enjoy him as much as I could. I will tell you, the sadness we feel during treatment is nothing compare to the sadness of not having him with us to touch.  Please don't look at my writing negative and I strongly believe you have many more years with your husband, I am just lovingly remind you to enjoy every moment with your husband and create beautiful beautiful memories. Because the reality is, God only knows the result of the treantment.All we have guranteed is the thoughts that we did our BEST with the information we know. I will tell you tha t  is the comfort that keeps me going with a grateful heart.

Another suggestion, you need a strong support, a friend,a family member,or your own adult kid, if you have, who will help you not to absorb fully in to the routines of treatments and everyday chores as a dedicated/loving wife is expected to do , rather encourage you to enjoy every moment with your husband (help you to initate to do things you like to do with your husband which he enjoys also) in the middle of all these.

P.S I called Duke during a desperate night and Dr, Friedman called back , but by that time my husband was too weak to participate in any trials.

 

Prayers and love,

Raani

 

 

 

 

 

 

sadinholland
Posts: 248
Joined: Apr 2011

Rani,

i can't thank you enough for responding to my post. I followed your story when you were posting about your husband and I am truly sorry for your loss and your pain. I really needed to hear what you were saying. Praise God for guiding you to respond to my message right when I am feeling so lost and in search of help, answers from someone that truly understands. I did contact Duke and Dr. Friedman did return my call. It was a brief conversation but he did ask why they have not started my husband on Avastin. He talked as if should be on it now. I didn't know what to think. I read Avastin was last result chemo, but I also read it can do a lot of good . When  he said that it scared me so I asked my husband's doctor at his next appointment and he said he wanted to try everything else first because Avastin has so many negative side effects. So, etoposide for two months, recheck, if it's not working then radiation and/or avastin. My husband is doing very well considering. I,on the other hand, and stressing and at times very depressed. Because I know from reading on these sites what this disease can do to my husband.  He has lost so much weight, he sometimes gets his words mixed up saying he when he should say she, that type of thing, his legs ache, I have to explain SOME things several times. Overall he does well. He sometimes goes to the gym to work out to try and strengthen his leg muscles, he rides the riding mower and he trims the yard. He is still able to drive and does several chores here and there. He keeps on pushing on, even when he doesn't feel like it. He told me he could sleep for 24 hours every day he just doesn't allow himself to do so. I admire him so much. All he is going through and has been through he just keeps pushing himself. I believe that is the key, to keep fighting and pushing yourself as long as you can. I love him so much and it hurts my heart to see him having to fight this. Thanks again Raani for checking in! I WILL cherish our moments, I WILL put everything else on the back burner and enjoy life with him and my daughter, I WILL concentrate more on our life together and enjoy. I know tomorrow isn't promised for any of us. I know we will never get today back so live it wisely. God bless you Raani, I pray God will strengthen you everyday and help you to find peace in your heart and fill that gap so you can, once again, enjoy life and think about the good memories you shared with your husband. Take care of yourself and God Bless! Thanks again for taking time to respond .

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

Sadin and Rani,

      I almost get scared reading the posts lately.  Benjamin is 3 years clean, told by his Doctor's he is to consider himself cured of his OLI 3.  Just

curious, did either of your spouses have their tumors removed?  Do the have the 1p19q  deletions, determined by the Molecular Genetic Testing - that

Benjamin's Dr's had done at John Hopkin's?  Why wasn't chemo and radiation done at the same time, being the Oli has fingers the like to grow and

can cross over in the brain?  In responding to CindySue about David a few years ago, he didn't have the deletions, and Edna's daughter Sarah also,

did not have the deletions.  Wondering why treatment is so different around the country for the similar tumors- I still worry like crazy everyday and pray

before every MRI, which are done every 6 months now.  I find myself watching him like a hawk - without him knowing of course - it would freak him

out.

      But, I agree, we need to spend as much time enjoying their presents in our lives on a daily basis.  My family has become so close, we get together at

the drop of a hat, and to see our children enjoying life to the fullest, without a worry in the world.  Guess, that's what parent's are for, to worry about

their babies forever, and then grandchildren come.  God has his hands full, just answering out prayers to keep everyone healthy, happy and  treasure

life .

      Death is real hard for me to face, I lost my parent's before I was even 25.  I miss them to this day, they have been gone over 30 years, but

their presence is with me daily in my heart.  I pray that you both find the courage and strength to get through each day.

     

"HUGS"

 

Carol

Raani01
Posts: 70
Joined: Mar 2011

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
Posts: 248
Joined: Apr 2011

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.

 

 

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

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
Posts: 248
Joined: Apr 2011

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!

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

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

sadinholland
Posts: 248
Joined: Apr 2011

I know  you feel like your life has been broken. David is your son. Nobody or nothing can replace our love we have for our children. I think the compassionate friends group would be worth a try. its nothing like talking to people that can relate to how you are feeling, people that truly understand. Sometimes I feel like I have nobody to talk to. My husband looks as if he's ok and he is doing fairly well. But I see changes in him. His comprehension, his walk, his looks. I know sometimes he doesn't feel quite right, although he tries to hide it from me. And because he appears ok on the outside, people sometimes don't get what you are going through.

Wow Cindy! Nine acres, and animals galore! You certainly have enough going on to keep you busy, in addition to working! Many blessings have come your way! Praise God! I'm glad you still,find the  time to ride, although I don't see how you do it! I too have a new blessing in my life. I have a 14 month old grandson. He came into my life right on time. I needed him! He has been a joy, he brings me so much happiness. I just love him so very much. 

As as for my husband, all is stable as far as his tumor goes and I am so thankful for that. I worry so much from MRI to MRI. Hoping and praying he will continue on the stable path. I'm not sure what chemo is left if something were to come up. He has never taken an IV chemo this whole time. After his recurrence in 2013, he had gamma knife, then Temodar again but after two months the tumor showed some progression, so they switched  him to CCNU, after 6 cycles of that, he had Lomustine for six cycles,  then the most recent was Etoposide for 6 cycles. During those times the tu or would show signs of progression and he would start the next chemo. I am praying once he has had this three month break that things will remain stable. It's not a large regrowth, thank God.

I don't hear from the others too often. I hope and pray everything is going well. If you ever need someone to talk to, I Am available!

God Bless!

 

 

 

 

 

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

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

 

I_Promise's picture
I_Promise
Posts: 213
Joined: Aug 2011

It is nice for you to drop in. I think of David often. I wish so hard we could have saved him.

J.

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