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Temodar advice/info

cdavis07
Posts: 11
Joined: Sep 2010

My husband who is 28 is about to start taking Temodar for his oligodendroglioma III. We are still waiting on a deletion report to determine if radiation is needed but the Temodar is a definate. This is our first course of treatment so we have no idea what to expect except what the doctors have told us. Any info we should know or be prepared for? Anything that helped with the side effects? Any info is much appreciated.

mpatelpharm
Posts: 6
Joined: Aug 2009

My husband took Temodar for 8 months and tolerated it pretty well. You take it 5 days every month. They should give your husband a anti-nausea med (kytril, zofran), and you take this 1 hour prior to the temodar. The kytril causes alot of constipation so you have to give something for that as well.(miralax or dulcolax). Otherwise its a fairly ok drug.

Im sorry to hear that you are going through this. I also have a young husband (35 y/o) who was diagnosed 1 year ago with a brainstem glioma. We also have two little kids so it makes it even harder.
Wish you the best in this long emotional journey...

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

My husband who is 36 yrs old started to take Temodar for his oligodendroglioma II. He has the deletions. He got fatigued and a little nauseous around day 4. However, once he decided to take the anti nausea pills, it was a lot better.

He only took 1 months worth because we then found a Neurosurgeon who said he COULD do a resection and believed it could be done safely (we were originally told no). His 4.8 cm tumor went to 5mm. No neuro deficits. We are know awaiting a MRI Oct 4th since it has been three months. Depending on that, they will decide on Temodar (since this tumor is chemo sensitive), or stereotatic radiation.

cdavis07
Posts: 11
Joined: Sep 2010

We are still waiting on the deletion report. At first the surgeon felt my husband would not need radiation but now it depends on the deletions. We had our follow up with the nuero-oncologist and he would have started him this week on Temodar but he wants to see what the report says. I hope your husband is doing well. How does he deal with it? How do you?

mpatelpharm
Posts: 6
Joined: Aug 2009

My husband is not doing well. He was doing well up to about 1 month ago. He had been on temodar for 8 months and was in great remission. It was like he was back to normal.

Today, he has lost 50% of his leg function and his speech is gone. We started him on physical therapy and speech therapy.

Im sure as you all know that being a caretaker to a cancer spouse is harder than the actual patient. Not only do i have him to take care of, i also have two little girls aged 2 and 4. We have both set of grandparents close by to help with food, kids, etc... but still the emotional toll this takes on us... no one can help with.

At the moment.. we take day by day. We are hoping that the new IV Chemo they have put him on will help him.

Please pray for me!

cdavis07
Posts: 11
Joined: Sep 2010

Mphatelpharm, I'm sorry to hear your husband isn't doing well. I hope you keep strong for him and your 2 little girls. I'm sure we are close in age and dealing with this at any age is difficult but when young it seems much harder. I feel like I should be senior citizen not turning 30. I believe in positive engergy and I am sending some your way. It makes me happy that you have some family close to help out. Even little things help. I hope the iv chemo works for your hubby and he gets better very fast. I'm sure he has great doctors and hopsitals working to make him better. I am praying for you and your family.

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

Praying for you, your husband and your babies.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

God bless you. I just can't imagine you going through this with such small children. I hope you'll post again and let us know how things are going. It's so hard on our loved ones battling the cancer, but it's tough on us caregivers. I know we'd do anything to take all the pain away for them. So glad you do have family who can help. Not sure I could have made it through some days without both sets of parents.

curly123
Posts: 4
Joined: Nov 2010

I am sorry to hear about your husband...I was on chemo...now on Avastin...I feel very good... my ongoloist wants to see how I am going with Avastin before bringing in Themora again.
I am being cared for at Jeff in Philly.My fr is both a Oncologist and Neurolist.He is looking at my symptoms as well as my mri. I had 80% of the tumor by surgery. Hope this helps

Carrie King's picture
Carrie King
Posts: 48
Joined: Sep 2010

My husband is doing amazing -- he for the most part hasn't let this affect him at all. He is the most positive person I know.

Me - I am supportive and fight for him. I "watch out" for him as he is still missing his bone flap (due to infection). I do this "too much" as I "am not his Mother". So you get the idea. . . .

I try to keep busy and pray all the time. I work in the ER which probably isn't good as I imagine everything in the world that can happen to him.

I think a support group would be great.

aranda
Posts: 11
Joined: Aug 2009

My husband was diagnosed with astrocytoma grade3 in June of 09. It has been a long, hard fight. He has gone through 2 crainiotomies, insertion of chemo wafers, wound care, had a drain inserted to relieve pressure and fluid, radiation, and still taking temodar. He has more bad days then good, and we enjoy those good days. This morning he had his first seizure. He had fallen out of bed during his seizure, it was one of the scariest moments I had seen. You ladies are the same or close to us in age, sorry I am just going on and on but I hadn't found people who are really in the same situation as us. My thoughts and prayers are with you ladies and your families.

TomK's picture
TomK
Posts: 10
Joined: Oct 2010

I see a few entries for that related to Temodar-what is that right now I am taking Temodar amd radiation 5 days per week.

Fusionera
Posts: 10
Joined: Oct 2009

Hi C Davis,

I am the Queen of Temozolomide...no joke. I took it in clinical trial from 1996-97, and of course it was approved by the FDA as a standard treatment in 2000. I can tell you that many people do tolerate it well and it works for them but everyone is different. The two side effects that I experienced were fatigue and lowered platelet counts. I almost missed the last dose of the trial because my platelets got too low. After three weeks of waiting and weekly blood tests, my counts became normal again and I finished the trial. Your husband's doctor may recommend iron pills or extra iron in his diet - you'd have to check with him/her.

I did not get sick on Temozolomide, but I will advise to make sure that he has a GREAT antinausea med like Kytril or Zofran. Kytrial worked well for me on my last bout with this 5 years ago but I was also taking a heavier chemo. Zofran was fine in the 90s when I was on Temozolomide alone and it may be for your husband - talk to his doctor about the best choice for him.

I still worked my full time job the whole time I was in the Temozolomide trial. I was tired and did not do too much in the way of activities outside of work but the quality of my life did not suffer too much either. I was not "flattened" by the Temozolomide, thank God.

Feel free to e-mail me privately if I can help. Will keep you and your husband in my prayers.

Johanna

cdavis07
Posts: 11
Joined: Sep 2010

Paul is actually starting his second round of Temodar tonight. Kinda worried because he has been having some bad headaches. Just spoke to the doctor today and we are going in next week for a check up. His MRI on Oct 25th looked great but for some reason he is having some issues. The first round of Temodar went well. He felt a little sick but he is taking Zofran which seems to help. I just hope his body works the kinks out. It kills me to see him in pain or suffering. Hopefully the doctor will be able help him with the headaches and other pains.

Did you do the Gliadel Chemo wafers? Paul did and I worry that they may be causing his issues. The benefit of them is great so if these are the side effects and temporary then that is ok. Just need it to stop soon.

Thanks for checking in and helping me out.

Catherine

curly123
Posts: 4
Joined: Nov 2010

The wholetime that i was on temodar I was on zofran to be sure!I missed a dose and I felt like I was at sea.
However, if Paul is having issues with swelling in his brain he should be getting other medicine.

j_waffles
Posts: 22
Joined: Jun 2010

I'm 27 and on round 5 of Temodar. I've been doing pretty well (apart from the past couple of weeks, but I think it's something other than the Temodar). I think what we have going for us is that we're young and our bodies can withstand more than the old folks. Also, I recommend that your husband uses a anti-nausea med (I use Zofran) 30 mins prior to taking Temodar. It works for me... and the one time I was late to take the Temodar after the Zofran because I fell asleep, I had a rolling stomach. Not fun.

Blanca831's picture
Blanca831
Posts: 8
Joined: Jul 2010

Hello! I am 28 years old and I just finished up my 4th round of temodar and I am glad to say I have not had any side effects whatsoever. I take an anti nasuea pill 20 min before the Temodar. I am proud to say that I havent even felt tired, or any nasuea which are the most common effects. Every person is different but thank goodness I am going through this treatment free of any side effects! Hope your husbands treatment goes as well as mine.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

My husband just finished 10 straight months of Temodar, after initially taking 44 days with his radiation of a lower dosage of Temodar. He consistantly took the Zofran, anti-nausea pill, one hour before taking the chemo. He never felt nauseous from it. The biggest side effect he had was fatigue. Because he went back to work full-time teaching after the radiation/44 days of chemo, I am sure that added to his fatigue. He'd come home and nap or head to bed early and rest most weekends. He rebounded in the summer, because he wasn't teaching, even on the chemo. I can tell you since he's been off, his energy level is so significantly better, but he's also been given Ritalin to help with the fatigue.

It's important to remember no two people are alike, but my prayer is he'll tolerate it as well as my husband and be able to work and/or do many of the things he enjoys. Rest is essential, though.

If possible, try to keep up a level of exercise he may be comfortable with. We tried to just walk as much as we could. There were days he didn't feel like it, but he typically felt better if he pushed through and took at least a short walk. (He wasn't big into exercise before.)

All the very best through this, and make sure to take care of yourself, too!

curly123
Posts: 4
Joined: Nov 2010

I have brain surgery on Arril fools' day of this year after whish I waited a good 6 weeks for my body to recover after which I had 40 treatments of radiation at the same time ingesting Temodar pills. One pill a day 250 mg. I was fortunate in that I was given anti nausea pills and in general just like the taste of food. I found that memory,taste and eating place a great role... example if you h ave a cold snd go to your favorite restaurant and order your favorite meal when you taste it ,it would'nt taste right,why because your taste buds are messed up from from your cold...well that is like chemoX10!
I was given a wonderful piece of advice to share... eat foods had you so not have result memories of....it worked for me!

RLR
Posts: 36
Joined: Sep 2009

Hello:

I am 56 and have had glio blastoma grade4 since Dec 08 and had surgery in Jan,09. I have been on Temadar ever since that time. The biggest thing I can tell you to help is to drink a LOT OF WATER and I mean a LOT. Before I was drinking a lot of water when taking the pill I would get sick and vomit every night. When I say a lot I always drink about 2 to 3 -20 ounce glasses of water after taking the chemo. I always take it at about 6:00 to 7:00 pm along with the anti-nausea pill and drink the water before 9:00 or 10:00 pm. I have never gotten sick after doing this.
As you can see I have been on chemo for 1 1/2 years now and my Doctor says will be on it the rest of my life.But it has been working very very good for me!
Good luck

sfg1017
Posts: 5
Joined: Jan 2011

RLR, I am so glad I saw your post. My husband was diagnosed with a GBM on 9/1/10, had surgery 9/6/10, and completed a 6 1/2 week course of radiation and a lower dose of Temodar. On January 7, 2011, he started the 28-day cycle of Temodar on days 1-5 and topotecan on days 2-6. He was doing great, taking his Zofran an hour before his chemo and then on day 7, just threw up out of the blue...no real warning. Yesterday he was just tired all day and only worked half a day, but didn't throw up. He continued to take his Zofran. Today he got up and felt good. He ate 2 poached eggs and and some fresh fruit and immediately got sick afterwards. He hasn't eaten or drunk anything since. He got sick again this afternoon. The nausea is not an all-day event...it just hits him. Did you or any others on this site experience this sickness after completing the 6-day cycle? I have encouraged him to drink the water like you said but he has not. I feel so bad for him. Thank you to anyone out there.

alohajimmy
Posts: 7
Joined: Nov 2010

My daughter was on it for 18 months. Other than some tiredness, this drug did not inhibit her lifestyle much. She was on both a 5/28 and a 45/60 schedule. - One concern is that in time the tumor develops a means of creating an enzyme which blocks the temodore. One trial is combine the temodore with another drug which aims to prevent the enzyme from interfering with the temodore.

oystertaco24
Posts: 6
Joined: May 2010

I know many people tolerate Temodar well, but I was not one of them. My oncologist, knowing that I'm young and otherwise healthy, wanted to try me on the strongest treatments she could get, knowing that I'd be likely to tolerate them. I got the highest Temodar dose allowable. I was fine on the daily Temodar during the six and a half weeks of radiation, but I couldn't handle the five-day cycles (in which the dose was tripled!). I was fine for, say, days 1-3 of the two cycles I tried, but getting up on day 4 just didn't happen. From day 4 until about two weeks past that, I was pretty ill. I missed a lot of work and spent the majority of this past summer on the couch. I was vomiting almost daily (even embarrassed myself by throwing up at two of my favorite restaurants), and my white blood and platelet counts were so low I nearly had to start getting transfusions. To make things even better, my tumor (grade III anaplastic oligodendroglioma) grew despite this supposed pounding! Once it was determined the Temodar wasn't working, I had to have blood drawn at least twice a week to ensure my platelet and white blood counts were going back up to a certain point before they could try something new. That took nearly a month!

I tried the Zofran for nausea at first. It worked on the nausea, but made me so horribly constipated that I will never take it again. Kytril seemed to help on the second cycle, though.

Apparently, my insurance requires that Temodar be tried and deemed ineffective before they'll pay for any other chemos. It turns out that my oncologist didn't really want me on it at all and wanted to go right to the Avastin, but BCBS said otherwise. Awesome! Thankfully, the Avastin seems to be working much better. Temodar seems to be fine for many people - but unfortunately, I was not one of them!

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

My daughter was on Temodar for 6 weeks during radiation treatments. We found that the temdodar made her very sick and tired all of the time. She is 13yr. We had her first MRI 3 weeks after her treatment cycle ended and the tumor had come back, even during treatment. She had her 3rd crainiotomy 3 days after the MRI. The surgeons removed the tumor again and said that there was nothing let for them to do. Well as a parent I was not willing to accept that answer, so We headed to Boston Mass to the Dana Farber/Jimmy Fund Clinic. They have given us options to consider. My daughter is now on a 5 drug regimen. She takes 3 oral chemo meds everyday and everyother week she does IV Avastin. These meds together are supposed to stop blood flow to cells(good and bad). Hopefully this treatment will stop blood flow to her tumor cells and they will die. She has to be really careful with germs and wounds as they will not heal fast because of the meds. She is now being tutored at home and carries hand sanitizer where ever she goes. For the nausea, she uses kytril. works so much better than zofran for her. At this point I am willing to do whatever I can to save her life. My daughters diagnosis is AA3 and unfortunetly i have been reading some sad stories lately, but i am not giving up. She is all I have. I already lost a baby at birth and she was born 7 weeks early. Shortly after that I had to have a hysterectomy due to complications. I know the lord is taking care of her, myself and anyone else who has to suffer from the awful disease named CANCER

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Momsworld.

I have been wondering how you and your daughter were doing. I have a hard time finding updates with the way this network is set up.

I have been praying for you and your daughter for months now, ever since your post when you said that there had to be something else and you were going to get another opinion. I'm very glad that you did go to a different doctor(s). I hope that this new treatment helps your little girl. She has been through so much for a 13 year old....she has been through things no adult wants to face. I hate it for her and for you...I hate it for all of us.

I admire you for your fighting spirit and your trust in the Lord. I pray that He will continue to give you strength, and that your daughter's condition will improve and that this new treatment will kill off any lingering cancer cells. Please keep us on this site updated on how things are going for you and for your daughter. You are not alone in this battle.

Love, blessings, and peace to you,
Cindy in Salem, OR

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