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Anyone Still On Here From 2009,2010,2011 with Anaplastic Oligodendroglioma Grade 2,3?

sadinholland
Posts: 226
Joined: Apr 2011

Looking for survivors from when I first joined this site in 2010 with the same tumor as my husband? Anyone out there? I would like to hear how things are going.

BenLenBo's picture
BenLenBo
Posts: 138
Joined: Feb 2012

I feel the same as you about the old group of us on this site.  Benjamin is cancer free, all MRI's have been clean since the day of

his surgery and doctor's can stack his MRI's on top of each other.  All the same.  Completed his Temodar and Chemo treatments

July of 2012, with no complications.  Doctor's at Roger Maris Cancer Center have seen Oli III survivors, 30 years out and expect

Benjamin to live a long, long life.  He is goes every 6 months for MRI's.  Benjamin did have the 1p19q deletions which makes the

chemo and radiation work on killing all possibilities of cancer cells remaining after his surgery.  The Genetic Molecular Testing and diagnois's was

done at John Hopkins, Surgery was done by Mayo ( they could not diagnois) and treatment procedures by Roger Maris Cancer Center. His

Pediactric Oncologist the top 1% physician in the USA and Radiologist is very well published, as well as tops in his field.  Guess we our

prayers were answered by getting the best of the best for treating our son's cancer and keeping him healthy.  Even while receiving his

treatments, Doctor's made sure he never suffered from side effects from the drugs, one was taking his anti meds one hour before taking

his temodar at night after a meal and before bed.  Worked like a charm. Benjamin had a little hair loss over his left temple, but not

noticeable, because he wears his hair short.  His surgery scars are a badge of honor!  HE IS A SURVIVOR!

    Today Benjamin has been back at work full time, enjoying life and hanging with his family and friends.  Currently, he is restoring a 1950

Chevy Truck to mint condition, and preparing for deer hunting.  Winter brings on ice fishing-- YEAH!!!!

     Our prayers are for all those starting their journey, been through this journey and those who are working their way though this

fight for life against brain cancer. May you continue to fight with all the strength you can muster.  May there be a cure for all so,

others will never have to suffer from cancer again. 

 

Sadin,  I hope your husband is doing well, this is not an easy journey, when fighting for your life.  We have not been on this site very often,

seems like those who started their fight are no longer seeking comfort from others on this site.  Tried to stay in contact with a few, but

no such luck.  Take Care and continue to offer your words of wisdom!

 

(((HUGS)))

Carol

luvs2run's picture
luvs2run
Posts: 8
Joined: Oct 2011

Sad,

I was diagnosed with a Oligo III in June of 2011 (1p/19q del and IDH1 mutation).  I had a complete resection and 9 months of chemo (BCNU).  Other than a little residual numbness in my right hand and foot, I am completely back to normal.  I am training to run a half marathon next month!  My doctors are echoing much of what Carol's son above is hearing: that the deletions make a huge difference in the prognosis of this disease.  My scans are all clear and I am cautiously optimistic about the future.  I still have days where I am fearful of this disease, but those days are becoming much more infrequent.

I have a friend from my home town with the same diagnosis.  Although he has had several recurrences, he is still going strong after 14 years!!!  Please let your husband know I am thinking about him and wish him the best.

Carol,

Thanks for your posts.  I was feeling a little down today.  Your posts always remind me of the positive side of things. Best wishes for your son!!!

Dave

 

sadinholland
Posts: 226
Joined: Apr 2011

Carol and luvs2run,

Thanks for replying. I always liked to come to this site because it was full of information and support. It makes me wonder if everyone is ok. There are so many that have passed that I followed on this site. I'm glad both of you/son is doing well. Having the deletions is a major plus! Enjoy life! You both give me hope!

 

 

mccindy
Posts: 82
Joined: Jun 2013

As someone who is new to this site as of this year, I find the survivor stories inspirational.  My own tumor is a WHO grade II diffuse fibrillary astrocytoma.  It was IDH1 positive, but they were unable to determine whether or not I have the 1p 19q deletions.  I had a 99% resection in July.  My doctor does predict recurrence in the next few years, but she is ready to use radiation as soon as she sees any new growth on my MRIs.  It's so encouraging to read the stories of people who have been on this forum for a few years and continue to do well.  It gives people like me hope.  Thank for you for continuing your participation and helping new people like me.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Cindysueforyou really rallied us in a way that was exceptional. 

You know that my sister has AA3 since August 2011 (AA2 probably from 2005). Her diagnosis is usually worst than the oligos. But she is doing really really well. Working full time, no deficits, enjoying life. We are probably going to go skiing this winter. MRIs are still every 2 months. 

There is hope.

All my love to you, your family and your husband. Let us know how he is doing. 

sadinholland
Posts: 226
Joined: Apr 2011

Cindysue2you did keep us afloat! She was my inspiration. She had such a positive attitude and a great faith. Her story was so powerful. She was very informative too, I learned a lot from her.

i am glad to hear your sister is still doing well. We have a bump in the road right now, but I am hoping and praying we will make it out of this and all will be ok. Thanks for replying, keep us updated once in while. I miss talking to all the people i talked to before!

sadinholland
Posts: 226
Joined: Apr 2011

I have been reading your post as well. I find you inspiring aswell. Take carecare and keep us posted.

 

God Bless!

mccindy
Posts: 82
Joined: Jun 2013

Thank you, sadinholland.  It's really wonderful to be able to find people online who know what we are going through and can share.  Makes me grateful for the Internet and the global reach it gives.  I imagine it would be difficult to find a good support group if we were restricted to local areas. 

CindySue2you, I did not ever get to interact with her, but I have spent quite a lot of time reading her posts and her son's story.  I would like to get my mother to come online and read them.  There is so much strength and inspiration in her story, I think it could be helpful to anyone who has family going through this.  Ben Len Bo is the same way.

sadinholland
Posts: 226
Joined: Apr 2011

I follow your post and you are very knowledgeable. I have learned a lot from you! I too am thankful to have a place to go and express myself and get information from people that are going through what we are going through.

 

God Bless!

Kees van Beelen's picture
Kees van Beelen
Posts: 11
Joined: Dec 2013

Hi - still here!  They found my tumour by accident in 2009 - a large inoperable oligodendroglioma II.  My doctors at Columbia Presbyterian said they only wanted to use surgery as a last resort given how risky it was and that a resection would not "cure" me.  I am what they call a highly functioning - no sign at all that anything was wrong with me.

They watched the tumour for a year via MRIs and then it started to turn more aggressive - there was an enhancement in it, which ended up giving me seizures. A major one put me in the hospital and on the operating table. The surgery was risky and complicated, but they removed the enhancement.  Tests showed I had the chromosome dilution so I started Temodar a month or so later.  My doctors decided to forego radiation given where the tumour was and the risks.  They said that if they did not get results with the chemo they would use radiation next. 

I tolerated the Temodar quite well - some nuseau and lost most of sense of taste, which came back.   The chemo showed results a couple of months in.  The tumour continued to shrink a year after chemo and is now almost gone.  I saw the before and after MRIs of the positioning of the ventricals in my brain - which now look normal to the untrained eye. I have been off chemo for almost two and half years now and everything is very quiet in there. I recently got moved to a MRI every four months. I still take Kepra though, but the lowest dose, just in case. 

I never missed much work, I am an active person and still engage in all those things. I had to deal with depression, but I got through that too.  

My doctors have been great.  They told me from the begining not to read the statistics online because the information is dated and typically not accurate - I was just on the UK Cancer site and their survival statistics for oligos are way off.  My doctors all said that advances in Neuroncolgy are happening so fast, that its sometimes a question of buying time for when these diseases can be treated more like chronic conditions.  At Columbia Presbyterian's Neurological Institute for example, they are using super computer to map these tumours and try to find allgorythms to search for cures.  

Keep the faith!  And do what you have to to get better.  All the best. 

sadinholland
Posts: 226
Joined: Apr 2011

Glad to hear you are doing well. My husband seems to be doing pretty good too. He is still taking CCNU. He starts his third cycle thus month. God bless and keep us posted!

mccindy
Posts: 82
Joined: Jun 2013

I'm glad to hear your husband is still doing well - I had wondered as I hadn't seen much of you lately!

sadinholland
Posts: 226
Joined: Apr 2011

How are you? My husband is doing good. He will be taking his third dose of CCNU next month. How are you feeling? Still having the headaches? My husband doesn't complain of any headaches. He does sleep quite a bit but Other than that , he seems to be doing well. Thanks  for ALL  the  words of encouragement. You arE constantly lifting all of us on this site. God Blessyou, and I pray you will continue to do well.

mccindy
Posts: 82
Joined: Jun 2013

Hello again.

I'm still having the headaches, they have actually gotten worse.  My GP gave me some meds to try, but so far no luck. I'm a bit worried about them because pain meds don't have any effect on them, they are waking me up in the morning and come and go during the day (lately not going so much), and making me nauseated.  I'm going to call my NO this week if no improvement.  I'm glad to hear your husband isn't having any headaches, it's a blessing that he's comfortable.  I'm glad I can help you all, because you all help me too!  Prayers for your husband and hopeful, positive thoughts!

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