Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
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 Post subject: New Member
PostPosted: Mon Aug 07, 2006 2:01 am 
Registered User

Joined: Mon Aug 07, 2006 1:37 am
Posts: 3
Location: Tulsa, Oklahoma
I am new to the group and am the mother of a 21 year old son that has survived two brain tumors. His first was found in the emergency room in Tulsa, Oklahoma on 7/2004 located in the right temporal lobe (7x6x5) which had invaded the skull l/3rd inch. The first dx was meningioma (whew), so no radiation was done. Almost 3 weeks after his release from the hospital, we were informed it was now hemangiopericytoma (bad).

He recovered from the surgery, got a job, a car, his own apartment and a new girlfriend (the old one left basically in ICU). We had a few good scans and then 16 months later (11/2005) found another - this time on the right frontal lobe and it was removed by a different surgeon on 12/05.
Since he only had medicaid, the first radiologist that found the 2nd tumor stated to us that "she didn't think she could find a surgeon to remove the 2nd one for 20 cents on the dollar"! Can you imagine.

The second tumor was sent to John's Hopkins, who in turn requested samples of first tumor and we were told that in fact, both tumors were now considered Mesenchymal Chondrosarcoma, not hemangio or meningioma. He did 33 treatments of photon radiation - is now 7 months post 2nd surgery and really struggling this time to get back up.

He just returned from Camp Mak-A-Dream in Missoula, Montana (the Young Adult Conference) - you have to be a survivor for 2 years, so couldn't go to the survivor's conference. He had a wonderful time with about 30 others with rare cancer, but few who had brain tumors.

His friends have scattered like cockroaches - he is having a few gran mal and some non-involved (you don't lose conciousness) seizures possibly due to medication mistake. He won't talk about his cancer. To date, only about 133 cases ever reported and only a handful in the brain. To date, no cure.

I would love to post his email address should anyone out there suffering life's challenges around his age (21) that have survived brain tumors care to reach out to him. I don't know how to get him to lead the army in the fight for his life. Possibly he could be pursuaded to join the group.

My heart aches for all of you - but if you have found this site - must rejoice in the fact that you are a survivor.

Damion's next scans are August 17th - and you all know how that feels!

Very Sincerely,

Diane Addison
Mom to Damion Henderson
Craniotomy 7/2004 left temporal lobe
craniotomy l2/2005 right frontal lobe
33 treatments of photon radiation concluded 2/2006
currently no evidence of disease
mesenchymal chondrosarcoma

P.S. The second tumor was considered a 2nd Primary and not mets.

 Post subject: Damion's Progress
PostPosted: Sun Sep 17, 2006 12:26 pm 
Registered User

Joined: Mon Aug 07, 2006 1:37 am
Posts: 3
Location: Tulsa, Oklahoma
dIt is now September and Damion just had his latest scans two weeks ago. I'm thrilled to report that we have no evidence of new tumor - 7 months post radiation and 8 months post 2nd surgery. HAPPY TO BE A NERD! However, there is some residual, chronic subdural fluid convex collection at the location of the 2nd surgery site. The neuro seems to think that it's old blood that wasn't completely drained in ICU. It seems to be somewhat increased since his last ct scans - so of a little concern to his doctor. We are going to rescan in 2 months and if no improvement will have to go back in a remove the fluid. He's had 2 craniotomies in 2 years and the doctor is hesitant to go back in so soon.

Although we have had some gran mal seizures we believe these have been either late affects of radiation or could be related to the fact that his psychiatrist had put him on adderall to help his short term memory, which we have stopped - he had 3 gran mal, 2 partial and 2 non-involved seizures in ONE day!

The neuro put him on Keppra and he quit the adderall and seems to be doing better. We had him evaluated by the Department of Rehabilitation -an incredible 3 day battery of testing and 2 full days of testing by a neuropsychiatrist and we have not yet received the results of those exams. Ya know, we've seen his brain since his surgery - but no one has evaluated the damage he has now from 2 tumors, 2 surgeries, radiation, the residual swelling and all of the medications he has been taking. We are anxious to see HOW his brain is functioning. One preliminary report from the neuropsyc. was that he has recommended "cognitive speech therapy". Damion has a difficult time coming up with the right words to describe his thoughts - he sort of rambles to throw attention away from questions asked him if his short term memory fails him. With damage to both right temporal and left frontal lobes, he struggles with controlling depression and he struggles to keep his personality and behavior in check.

He finally was able to quit the decadron - which is a Godsend. He has over 100 stretch marks on his body - over 3 to 4 inches long and 1 to 2 inches wide - completely around his waist, all the way around his shoulders, on his buttocks, on his thighs, under his armpits and now they are appearing in his groin. He looks as if he's been thrown into a den of lions. The ones around his waist look like FLAMES and they are PAINFUL. He gained 45 pounds rapidly and seems to be slowing down, but his skin is still just tearing. He can feel it rip when he sits down. He is so self-concious about his scarring. So, for those of you just starting steroids, please seek the advice of a dermatologist IMMEDIATELY. Should we had prior consultation, maybe we could have prevented some of the damage.

I think of you all often - am quiet most of the time, but will try to become more involved.

My heartfelt regards are with you. Damion will be 22 in two weeks. Maybe he can live a shred of the life of a 22 year old.

Diane Addison
mom to Damion Henderson
Mesenchymal Chondrosarcoma
craniotomy 7/2004 - left temporal lobe
craniotomy 12/2005 - right frontal lobe (2nd Primary)
33 treatments of photon radiation to both surgical sites 1/2006
currently NERD!

 Post subject:
PostPosted: Fri Dec 22, 2006 9:03 pm 
Registered User

Joined: Wed Dec 20, 2006 12:08 am
Posts: 4
Hi, your son seems to have gone through so much, compared to myself, its often makes me feel guilty that I feel down and depressed at times! I had an astrocytoma removed in Aug 2005 just before my 21st birthday. Thankfully it was beningn, therefore I required no further treatment. I left hospital after 3 weeks, and went back to work in November, part time, starting full time in Jan 06.

I'm now 22, preparing my wedding, have my own house and car, and am looking to the future. I have lost part of my childhood (even though at 21, you're classed as an adult!), I had to grow up so quick, and think about things that didnt need consideration until I was at least 50, but its just part and parcel of the way my life has panned out, and I'm sure, in time,your son will feel the same. PMA (positive mental attitude) has helped me tremendously, and I hope your son thinks in the same way (I'm sure he must, as hes come this far!)

Anyway, all my best wishes to yourself and your family for Christmas and New Year!!


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