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Starting Temodar Today... Nervous and Scared

bpnormile's picture
bpnormile
Posts: 5
Joined: Mar 2013

I am 33 years old and was diagnosed with Grade II Oligodendroglioma in October of 2012.  I had surgery the next day to remove the tumor and the surgery was very successful.  They told us after the surgery that they think that they go all of the tumor, but there were some gray areas in the spot still.  When we asked about these they told us it was either pieces of the Tumor still there, an infection, or scar tissue.  In case it is tumor they have recommended Temodar 300 MG once a day, one week per month for six months.  I am starting this today and am very nervous to take a chemo drug.  What have your experiences been with this drug?  Is it normal for me to be this scared to take a this drug?  I am sorry to post this here but I feel that no one else around me really understands what I am going through and how hard all these decisions are for a person to make.  I thought I could get some insight from people here who have had first hand experience with the disease and Temodar.  I should note that they recommened radiation, but I at this time will not allow that to be done to me as I feel it is dangerous.

scorpio79
Posts: 25
Joined: Nov 2012

Hi...Hope you are ok...I understand you must be nervous......Temodar reacts differently to different people...when my BIL took it I know he had nausea...but he got through it...glad to know that y our tumor operation was succesful...Do you know if you have the 1P 19 Q deletions..is there any reason why you do not want radiation....it is normal to get scared....Just stay strong and fight this disease...if you need anything please contact me...All the best

bpnormile's picture
bpnormile
Posts: 5
Joined: Mar 2013

Thanks Scorpio for responding...  I took my first dose about two hours ago.  I am glad to know that your loved one got through the Temodar... that is very encouraging to me.   I do have the 1P 19Q deletions.  Basically my Neurosurgeon said that I was very fortunate because of where the tumor was, the grade and the deletions.  He said that it was the best of bad situation.  My main reason for not wanting radiation is the long term effects that I have read it could possibly have on me.  One of the things I am most scared about with radiation was that it can cause necrosis (sp?) which is where parts of the brain die off.  Being in the line of work that I do I cannot take a risk like that.  What should I be on the look-out for as I start taking this drug?

scorpio79
Posts: 25
Joined: Nov 2012

Hi its a very good thing you have 1P 19 Q deletions it means you will react to chemo very well...My BIL did not have that it just made things worse for him..unfortunately he died 10 days ago after battling Oligodendroglioma for 6 years...he was just 29...please do not get discouraged...like i said everyone reacts differently and I have read that people with 1P 19 Q deletions have reacted well to Temodar....just be strong...make sure you ask the doctor all the questions...look out for any new drugs in the market...theres a lot of research going on in this field...All the best to you

bpnormile's picture
bpnormile
Posts: 5
Joined: Mar 2013

I am so sorry for your loss...  Thanks for still coming on to this site and helping others like me through our journey's with this disease.   All the best to you as well and if you need someone to talk to ever feel free to reach out to me.

Raani01
Posts: 70
Joined: Mar 2011

Hello,I am writng to you to encourage you to go ahead and take the Temodar. My husband took temodar very casual like a vitamin tablets for may many years (Once in a while he had nausia feeling and the anti nausia before the chemo took care of it). My husband was dx in 1997 and went to the Lord last year July18,2012. He lived  like he is 100% healthy until the beginning of 2012. He worked as a finance manager and he was busy to be soccer dad to our 3 boys.He was a good husband and father,never lived like somthing would happen to him. Now,I second guess now that whther it was a good approach or not.I mean, we lived like any other couples. Palnning to retire together (The last time we shopped at Macy's , when I tried to buy him a shirt, he said we would come back when it comes on sale!Honestly, I regret somewhat that why I didn't live like something would happen to my dear husband.However, my boys always comfort me saying the way dad lived is the right way!). Any way, I wanted to encourage tohave apositive attitude and find  a good NO at a reputable facility who treats lots of Oligodendro patients.Do everything in your power and leave everyhting else to God.I always debated radiaton first or not. His NO said radiaiton as a first weapon to keep the tumor at bay (differnt NO belive different approaches that is why consult more to helpyou make intelligent decisions.But at the end , I have a gut feeling that long term side effect of radiation caused his brain bleed. I a going to post some milestones in my husband's case. Please know that he was leading a very normal life. And I sometimes wonder, if there would hve been better approaches to extend his life!!!Please keep reminding yourself that each person is different and there are so any people out there living 20+ years with oligo. When we were told my husband had Olgo, the doctor joked "you get the best one in the family of tumors).

·         1997 – diagnosed to low growing oligodendroglioma –grade 1-consulted many doctors and everyone recommended NO Surgery due to th e  locaiton, left frontal lobe-undergone  Radiation therapy and tumor is in remission,

  • August 19 , 2003 – change in MRI-  Biopsy#1 (pure  Oligo , grade 2)- Started Temodar chemo and the tumor went to remission ,MRI every 6 months
  • May 9, 2007  - dimension changed from 9.9 mm to 11..mm
  • June 7 , 2007 – Biopsy#2, (Oligo with astrocyto, grade 3)
  • July,2007 – re-started Temodar, 5days per month – Temodar worked !!!
  • January 20,2009 – Temodar dose changed from monthy to 5days with 9 days off as a maintenance dose and continued
  • July 3, 2010 – Grand mal seizure (MRI showed no significant change in tumor! The conclusion was the seizure caused by a combination of reasons like, scars, sleep deprivation, seizure medication, etc)
  • February 17,2011 –MRI showed hemorrhage (about 4cm mass) ; stopped temodar chemo due to more bleeding risk.NO conlcuded that tumor is not responding to Temodar anymore
  • March 17, 2011 – Apt with Dr. Julie E. Hammack at Mayo .Suggested CCNU before considering surgery.
  • April 5, 2011 – Started on CCNU and tumore responded to CCNU
  •      Dec 15th,2011- surgery at Mayo  to remove fluid build up - surgery was successful

·         Feb 9, 2012 Brain bleed

(my husband lost cognitiveness and started to decline)

 

Raani01
Posts: 70
Joined: Mar 2011

Hello,I am writng to you to encourage you to go ahead and take the Temodar. My husband took temodar very casual like a vitamin tablets for may many years (Once in a while he had nausia feeling and the anti nausia before the chemo took care of it). My husband was dx in 1997 and went to the Lord last year July18,2012. He lived  like he is 100% healthy until the beginning of 2012. He worked as a finance manager and he was busy to be soccer dad to our 3 boys.He was a good husband and father,never lived like somthing would happen to him. Now,I second guess now that whther it was a good approach or not.I mean, we lived like any other couples. Palnning to retire together (The last time we shopped at Macy's , when I tried to buy him a shirt, he said we would come back when it comes on sale!Honestly, I regret somewhat that why I didn't live like something would happen to my dear husband.However, my boys always comfort me saying the way dad lived is the right way!). Any way, I wanted to encourage tohave apositive attitude and find  a good NO at a reputable facility who treats lots of Oligodendro patients.Do everything in your power and leave everyhting else to God.I always debated radiaton first or not. His NO said radiaiton as a first weapon to keep the tumor at bay (differnt NO belive different approaches that is why consult more to helpyou make intelligent decisions.But at the end , I have a gut feeling that long term side effect of radiation caused his brain bleed. I a going to post some milestones in my husband's case. Please know that he was leading a very normal life. And I sometimes wonder, if there would hve been better approaches to extend his life!!!Please keep reminding yourself that each person is different and there are so any people out there living 20+ years with oligo. When we were told my husband had Olgo, the doctor joked "you get the best one in the family of tumors).

·         1997 – diagnosed to low growing oligodendroglioma –grade 1-consulted many doctors and everyone recommended NO Surgery due to th e  locaiton, left frontal lobe-undergone  Radiation therapy and tumor is in remission,

  • August 19 , 2003 – change in MRI-  Biopsy#1 (pure  Oligo , grade 2)- Started Temodar chemo and the tumor went to remission ,MRI every 6 months
  • May 9, 2007  - dimension changed from 9.9 mm to 11..mm
  • June 7 , 2007 – Biopsy#2, (Oligo with astrocyto, grade 3)
  • July,2007 – re-started Temodar, 5days per month – Temodar worked !!!
  • January 20,2009 – Temodar dose changed from monthy to 5days with 9 days off as a maintenance dose and continued
  • July 3, 2010 – Grand mal seizure (MRI showed no significant change in tumor! The conclusion was the seizure caused by a combination of reasons like, scars, sleep deprivation, seizure medication, etc)
  • February 17,2011 –MRI showed hemorrhage (about 4cm mass) ; stopped temodar chemo due to more bleeding risk.NO conlcuded that tumor is not responding to Temodar anymore
  • March 17, 2011 – Apt with Dr. Julie E. Hammack at Mayo .Suggested CCNU before considering surgery.
  • April 5, 2011 – Started on CCNU and tumore responded to CCNU
  •      Dec 15th,2011- surgery at Mayo  to remove fluid build up - surgery was successful

·         Feb 9, 2012 Brain bleed

(my husband lost cognitiveness and started to decline)

 

nikist100
Posts: 3
Joined: Mar 2013

Hi, I'm really new to this board-like 2 minutes ago-but I saw your post and wanted to respond to help reassure.  My husband is also 33 and was diagnosed last summer with stage 4 Glioblastoma.  He had a craniotomy to remove (most) of the tumor, and he started radiation, chemo pills (Temador), seizure meds and steroids to reduce the size of the tumor.  He made it through the surgery ok too-he did have left side paralysis, but that's because his tumor (orange-sized) was right on the motor strip.  He regained use of his left side within a few months and is still doing great with regards to motor skills.  He did 6 weeks of radiation and exhausted that, and now he's finishing up a year of chemo pills and is still on his steroids and seizure meds.  He was told he has to stay on the steroids and seizure meds indefinitely, but his last MRI showed the tumor is stable.  I do have to say, though, I was really scared for awhile b/c he (we're) so young, but it's coming up on a year and he's doing great.  I'm actually extremely surprised that he's doing so well on the chemo (I don't know if it's b/c I'm young, but I always assumed chemo made you throw up for days on end and you were on your death-bed all throughout it.  My husband is only fatigued the first night and the second to the last night on them!!!!)  Because you only have a level 2, the prognosis is MUCH better for the tumor to disappear and you'll be relatively normal after all of this.  My husband isn't quite so lucky-we konw the tumor will return and he will eventually (most likely) die suddenly of a seizure.  I should mention that the steroids made my husband kind of "balloon up" b/c of all of the water retention-he even had to get those diabetic socks to keep the liquid from pooling in his feet, BUT compared to how bad this could've turned out, that's nothing!  We've really been focusing on eating healthy, walking EVERY DAY (even if it's just to the end of the block and back some days), and trying to stay positive.  So far, so good.  I know you're hesitant about radiation, but I think that's the only thing that saved my husband's life (and probably the steroids keeping the tumor at bay, too), but the radiation killed the tumor in its tracks so the steroids could take over and keep it under control.  I will say, though, that his MRIs now show a big black "spot" of dead cells, though-good cells and bad, that are dead, but with a 12 month life expectancy, we did what we thought was best to prolong "quality of life," they say.  Though he's a bit bigger and has trouble making a peanut butter and jelly sandwich and understanding how phones work now, he's still the same person I love and married 9 years ago.  I think you should do what's best for you, but don't be afraid of the chemo...be strong and fight.  Best of luck. :)

steveeray
Posts: 2
Joined: Mar 2013

I had no issues with 150mg of Temodar, took a Zofran anti-nausea 30 minutes prior. Which I took for 6 weeks concurrent with radiation. Last week was my first 5 day cycle at 300 mg and it really wiped me out. Extreme fatigue. I know the 300 mg was based on my height and weight but hope my Dr will agree that I can go with less for the next cycle.

kelken
Posts: 1
Joined: Mar 2013

New here but I have been taking temador for a while.  I have an inopertable brain tumor. I have had a shunt put in, and this year, the doctor went in to remove the cysts that had grown.  I have done radiation and temador for 6 weeks, and now the new cyst is is doubled in size and am taking more temador.. I take 300 mg a night for 5 nights and then off for 3 weeks, and then I do it again.  This will go on for 12 months.  It's not to bad.  I get stomach cramps, and I sleep alot(gets me out of house work, shave my legs less, and there is some hair loss but not much.)  I have 2 girls....12 and 6, they help me keep track of my weeks.

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