How long did you / have you been on 5/23 Temodar?

Hello all, my Mom was diagnosed with GBM this past summer. She has done the radiation/chemo and is now doing the 5 days of Temodal per 28 days. Her oncologist is saying 6 months and then she is done. My question - if the temodal continues to work, shouldn't she stay on it? Any experiences you can share would be great.

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I just finished my 6 months of the 5 on 23 off. My temodal worked and I stayed on it for the full 6 months. I had no side effects so I stayed on it. I wanted to make sure I finished my treatment protocol. From what I was told they only have a 6 month treatment protocol and after that it is clinical trials should the tumour recur which terrifies me.

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It depends on a lot to determine how long one stays on the chemo ! Everyone is certainly different. For me I was on it for over a year ! I was disagnosed in Apri of last year. Had surgery to remove my goose egg sized turmor on my front rite side. I did radiation and chemo worked my way up to 260mg on 5 days off 23 then start cycle again. I had two MRIs since then fortunately no growth ! To be honest it is alittle freaky to get off if things are working in there, however, My doctor said he was going to take me off since my body was beat up enough. Did your mom have surgery, how big and where was her tumor. I get another one at end of Januaury . Feel free to ask me anything you would like, I don't sugar coat anything. You can always get a second opinion ! My doctor recommended that , no problem he said but I did not. Good luck and hang in there, your mom is lucky to have you. How old is your mom may I ask?

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Thank you for your responses. My Mom is 72, but prior to her GBM diagnoses she was in picture perfect health - never on meds, no high blood pressure - nothing! Our only indication that something was up was that she couldn't articulate what she wanted to say (had a hard time getting words out) and she could no longer speak Dutch (which was her first language).

She had surgery in June and the neurosurgeon said he was able to remove everything he could see. I can't remember the exact measurements, but I think it was around golf ball size - right temporal lobe. She had the 6 weeks of radiation, along with chemo, and then started the 5/23 cycle in October. She does not get sick at all - just fatigued from the chemo. She had first MRI in November and the oncologist and neuro surgeon was pleased..there was a small spot still showing, but smaller than the MRI she had prior to starting radiation.

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My husband did 6 months of Temodar 5/23. He only took 180 mg because he had so much trouble with his blood counts dropping. He is on a clinical trial drug vorinistat SAHA for 12 cycles. Now that he is off the Temodar, he is feeling so much better. His blood counts have really improved. His platelets were 99 at the end of his last Temodar cycle, 2 months later, they are 131! His neutraphils went from 1.2 (too low to start his next round of chemo) to 2.4! During his 6 weeks of daily treatment, he had to have 7 platelet transfusions and his neutraphils were too few to count. Taking him off the chemo at the end of the 6 weeks did nothing to improve things. His bone marrow was severely suppressed.
Our neuro-oncologist said that staying on the Temodar for a longer time doesn't provide any additional benefit. There isn't really much difference between being on it 6 months or 12 months. I'm always shocked when I see people post that they have been on it for a couple of years. Our NO is very involved in research and I trust him and his opinions on different treatment options.
Becky

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My husband will start his 12th round of Temodar 5/23 next week. He has been on a high dose (400 mg) my understanding is that the doseage is based on your weight. He gained quite a bit from steroids and was at 225 lbs. his blood counts have been pretty good but the cumulative effects have taken a toll. I wish we had known more about the 6 mo. Vs 12 mo...... His tumor is inoperable and after this final round of Temodar we start the "watch and wait". The MRI still shows the exact tumor, no shrinkage, but the NO assures us it is dormant.

I am hopeful that John will have the experience that it sounds like some of you have had and start felling better once it is out of his system!

Has anyone else experience - no change? As bad as the Temodar treatments have become, it seems scary to "watch & wait".

Hopeful and Happy Holidays.

Shelly

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even though my tumour no longer visible We will be Watch and Wait which is scarey! I too gained wait on steroids. The oncologist said no matter what you eat you will gain weight. Now that I am off steroids I have lost weight, a lot of it was water retention! I was puffy! My temodar also increased/decreased depending on my weight.

I finished chemo Nov 11 and I feel good but still tire very easily.

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My mom had surgery in August for GBM4. They said they got 75% of it. She did the low dose Temodar and radiation afterwards. When they started her on the maintenance chemo, she also started Avastin. She has had 4 treatments of that so far. I don't know how it's working, bc we don't get the MRI until next month. Oh, and her Dr said she'd be on the Temodar for a year.

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My husband was on it for a year,and we wanted to stay on it because he had no new growth while on it,but they said no more. Now six months later there is new growth in a place they can not operate. He will go back on it after Christmas. I read in one email where a man was on it every day for life,but very low dose,and I know a woman who is on it for another cancer,and has been on it for 5 years,still walking around. My husbands Oncologist said it can cause other problems,and not as effective if on it to long. I still wish my husband could have stayed on it. Seems your dammed if you do,and dammed if you dont. Kathy, Toms wife

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I had only a tiny portion of my Grade 2 Oligodendroglioma brain tumor removed due to its location and followed up with 6 months of Temodar. I did not go through any radiation and did 6 more months of Temodar approximately 5 months later after I had a second opinion by Dr Jaeckle at the Mayo Clinic in Florida as he is doing a study into this type of tumor that has the chromosone deletions. I have never had my tumor shrink but thankfully it is not growing. My surgery was done May 2007. Happy Holidays!!

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Amy0224~ I too have had brain tumor removal surgery and have GBM diagnosed in February 2012 for me. I have been on Chemodar chemo from April through now, and still do it every 3 weeks for 5 day periods with 2 tablets each day. Luckily I have tolerated it well for my age of 65, and it makes most people tired or other possible side affects. As long as the chemo is not damaging the liver and kidneys ( I have monthly blood work to checdk this out by my brain cancer doctor), i can be on this for a longer time as necessary. Time will tell if this does the trick or not to destroy the current brain cancer, and I have been told the MRI brain scans are beginning to show no cancers! Just ask your cancer doctor these questions and let the doctor decide.

Good luck!
John

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I have a Meningoma Brain Tumor and have been on Temodar for the last 11 years the Dr. at Duke have said as long as I'm not haveing any problems (I have my blood work done every 27 days)I can stay on it.

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Thanks everyone. Basically, it seems that the length of time taking this drug really varies. My mom tolerates the 5 pills very well - just makes her tired. I'm not sure if we should push the oncologist to keep her on this longer, or do the 6 months and then watch and wait.

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I live in BC Canada and our medical system only covers chemo for 6 months. A GBM patient that I knew of was doing well on chemo so oncologist had to write letter to BC Medical to get increase.

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I've been on Temodar 21/28 since 2009. Summer 2010, small tumors were found ; stereotactic radiation was used on the first occurrence which appeared to take care of the tumor. Another appeared a short time later. I was started on Avastin which appeared to take care of that tumor; I continue on it q 2 weeks and no recurrence, so far. If a tumor should reappear, don't give up as researchers come up with new treatments often.

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My husband was on Temodar from mar2010 to mar 2011. His no said he could continue for another year. But my husband was having a terrible time with fatigue and rash that he opted not to continue. His scan in sept 2012 showed recurrence, he elected to restart the Temodar and his scan 2 months later showed some regression of the tumor. We are hoping for continued regression with his next scan on jan 16th

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I've been on Temodar 5/28 days not for 9 yrno new growth.

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I did high-dose Temodar for 2 years (24 cycles) and tolerated it well. It kept my Oligo at bay until the very end, when they discovered new spots. I went for a 2nd surgery in October, now I just finished 6 weeks radiation and daily Temodar. I might be put back on the 5/23 high dose Temodar depending on how my MRI goes at the end of this month.

That being said, my neuro-onco mentioned she would be okay with me being on the high dose for up to 30 cycles!!! But that also might be because I'm young (29) and can tolerate it better than most patients.

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What kind of tumor do you have? What is the MG? Thanks, Kathy, Toms wife

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