Problems with Temodar - interrupt treatment?

I had primary CNS lymphoma in 2012. I got cortisone and then three rounds of four day treatments with Methotrexate, antibodies and other stuff. The tumour vanished. Then my stem cells were collected, I got high dose chemo according to the BEAM scheme and then I got an autologous stem cell transplant. Now I am on 250 mg Temodar pills for four days each month and have been so for 18 months with still 6 months to go according to plan.

For the first year the Temodar was not so bad. I got nauseous (and got Primperan) and tired and avoided driving a car those four days every month. But lately I get more nauseous and more tired. The latest treatment was even significantly worse, and then I also got what I think is a few small blood-vessel wall inflammations. I think that I can recognize these inflammations since I got a big one during my heavy chemo period 2 years ago. They are risky because they can lead to thrombosis.

I will call the hospital Monday July 14 and discuss what to do.

I wonder if more people have experienced more and more trouble from Temodar?

Would it be wise to interrupt my Temodar treatment and stop it after 18 months instead of 24? Would the risk of a relapse be significantly greater?

I would be grateful for your views on this.

 

Sten

Comments

  • Sten
    Sten Member Posts: 162
    Temodar

    I talked by telephone to the doctor in charge during the vacation period, and she said that I should go on with my 19th Temodar period as planned in the middle of August, and if I have problems then, I should call the hospital the same day. So I will do so if my usual doctor does not call me and says something else. I hope that the problems will not be too bad.

    Sten

  • jimwins
    jimwins Member Posts: 2,107
    Sten said:

    Temodar

    I talked by telephone to the doctor in charge during the vacation period, and she said that I should go on with my 19th Temodar period as planned in the middle of August, and if I have problems then, I should call the hospital the same day. So I will do so if my usual doctor does not call me and says something else. I hope that the problems will not be too bad.

    Sten

    Hi Sten

    I'm sorry you are having these problems with Temodar.  Please keep us updated and feel free to come here anytime, Sten.

    Good luck with the next round!

    Jim

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Hello

    Hi Sten.

    I have read your post since you began here, and you are obviously very well-informed about your disease and its treatment. I have never commented because (like most of the folks here, I suspect) CNS involvement is pretty rare with most lymphomas, and complex as well. 

    I know that with most chemotherapy drugs, doing the whole program (length of treatment) is usually better; the amount of dosing, etc., is usually based on extensive statistics regarding what seems to work best, verses what does not.  Some diseases are so rare, however, that there does not exist a lot of evidence regarding outcome when a schedule is changed one way or the other.  I have no idea as regards CNS or with Temodar.

    I see you play classic guitar. I used to (decades ago) play electric, and had thought of taking up jazz bass (I would like to get a Music Man Stingray), thinking it might be easier since I have pretty significant neuropathy, but have not yet.  I also did electronics for years in the submarine service, but as a tech, not as an engineer. Severe trauma in an auto crash in 1986 put an end to me crawling around in switchboards, however.

     

    Lacking strong evidence one way or another, I personally would stay the course as your doctor recommended, but am aware that that will not be easy.

    I hope your side effects lessen soon.

    max

    http://www.chemocare.com/chemotherapy/drug-info/Temodar.aspx#.U9AjYOkg-70

     

    .

  • Sten
    Sten Member Posts: 162

    Hello

    Hi Sten.

    I have read your post since you began here, and you are obviously very well-informed about your disease and its treatment. I have never commented because (like most of the folks here, I suspect) CNS involvement is pretty rare with most lymphomas, and complex as well. 

    I know that with most chemotherapy drugs, doing the whole program (length of treatment) is usually better; the amount of dosing, etc., is usually based on extensive statistics regarding what seems to work best, verses what does not.  Some diseases are so rare, however, that there does not exist a lot of evidence regarding outcome when a schedule is changed one way or the other.  I have no idea as regards CNS or with Temodar.

    I see you play classic guitar. I used to (decades ago) play electric, and had thought of taking up jazz bass (I would like to get a Music Man Stingray), thinking it might be easier since I have pretty significant neuropathy, but have not yet.  I also did electronics for years in the submarine service, but as a tech, not as an engineer. Severe trauma in an auto crash in 1986 put an end to me crawling around in switchboards, however.

     

    Lacking strong evidence one way or another, I personally would stay the course as your doctor recommended, but am aware that that will not be easy.

    I hope your side effects lessen soon.

    max

    http://www.chemocare.com/chemotherapy/drug-info/Temodar.aspx#.U9AjYOkg-70

     

    .

    Temodar trouble

    Hi Jim and Max!

    Thank you for your sympathy!

    I will plunge into my next round of Temodar by the middle of August, and if I have trouble then, I will call my hospital.

    I see that Max is also interested in performing music. This is great for relaxation and finger training. I have two classical guitars, one Ramirez 1a cámara model and one Bolin, and I also have two 11 string alto guitars which are good for playing old lute music.

    I wish you fine days, now and in the future.

     

    Sten

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Sten said:

    Temodar trouble

    Hi Jim and Max!

    Thank you for your sympathy!

    I will plunge into my next round of Temodar by the middle of August, and if I have trouble then, I will call my hospital.

    I see that Max is also interested in performing music. This is great for relaxation and finger training. I have two classical guitars, one Ramirez 1a cámara model and one Bolin, and I also have two 11 string alto guitars which are good for playing old lute music.

    I wish you fine days, now and in the future.

     

    Sten

    Sten,

    I have written for a few months now regarding my next-door neighbor, who has lymphoma (see thread "Odd History"). I went out in the backyard yesterday, and heard acoustic guitar, professional quality, but since I live near Main Street in this lttle town, I thought I heard a band practicing at the Square, where free music is available on the weekends.

    It was my neighbor ! He was doing a studio-quality version of Pink Floyd's Wish You Were Here, then some Zepplin, and then the Hollie's classic Long Cool Woman. I spoke up and told him I did not know he played, and he said he had been performing since he was 14, had toured with a band two years in his younger days, had cut four songs professionally, worked in Nashville for a time.  He said that his band occasionally used to open for 38 Special and REO Speedwagon.  All this is rock, of course, but the guy is an amazing talent.

    Your instruments are remarkable; not everyone may realize that classical guitars have nylon strings, not steel ones.   I wish you could submit a link of your playing.

    thank you,

    max

  • Sten
    Sten Member Posts: 162

    Sten,

    I have written for a few months now regarding my next-door neighbor, who has lymphoma (see thread "Odd History"). I went out in the backyard yesterday, and heard acoustic guitar, professional quality, but since I live near Main Street in this lttle town, I thought I heard a band practicing at the Square, where free music is available on the weekends.

    It was my neighbor ! He was doing a studio-quality version of Pink Floyd's Wish You Were Here, then some Zepplin, and then the Hollie's classic Long Cool Woman. I spoke up and told him I did not know he played, and he said he had been performing since he was 14, had toured with a band two years in his younger days, had cut four songs professionally, worked in Nashville for a time.  He said that his band occasionally used to open for 38 Special and REO Speedwagon.  All this is rock, of course, but the guy is an amazing talent.

    Your instruments are remarkable; not everyone may realize that classical guitars have nylon strings, not steel ones.   I wish you could submit a link of your playing.

    thank you,

    max

    Guitar playing

    Hi again Max,

    I am impressed by your neighbor.

    Yes, I have four concert class instruments, but my skill is limited and my playing is not enjoyable to listen to.

    I play only classical music too, and my favourites are the lute suites by Johann Sebastian Bach.

     

    Sten

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Sten said:

    Guitar playing

    Hi again Max,

    I am impressed by your neighbor.

    Yes, I have four concert class instruments, but my skill is limited and my playing is not enjoyable to listen to.

    I play only classical music too, and my favourites are the lute suites by Johann Sebastian Bach.

     

    Sten

    Bach

    Sten,

    I love Harpsicord music (oddly enough), of which I understand Bach was the master.

    We have a violinist at church of whom the SPCA ought to be concerned, since I am sure dogs in the distance are tortured by her playing. Skills wane. I used to be great in chemistry, but can't mix cool aid properly now.

    blessings,

    max

  • Sten
    Sten Member Posts: 162

    Bach

    Sten,

    I love Harpsicord music (oddly enough), of which I understand Bach was the master.

    We have a violinist at church of whom the SPCA ought to be concerned, since I am sure dogs in the distance are tortured by her playing. Skills wane. I used to be great in chemistry, but can't mix cool aid properly now.

    blessings,

    max

    New period of Temodar going on now in September

    Yesterday Monday evening I started a new four day session of taking Temodar.

    Unfortunately it is quite bad. I could not sleep for half the night, and I felt nausea even in the morning. Today I have so far been able to eat a little youghurt and toast.

    It surprises me that the trouble has increased since I started taking Temodar 1 1/2 years ago.

    Tonight when I take the Temodar I will try a new medicine against nausea, Ondensatrone. I tried it once before in August, but it causes constipation and that was bad. Now I have got a laxative, Laxoberale, to ease constipation.

    The Temodar is scheduled for me for a total of two years, of which five months remain. Its purpose is to remove possible micro metastases and thus prevent a future relapse of my disease, primary central nervous system lymphoma (PCNSL).

    I want to follow the prescription and take Temodar for five more months, but the side-effects of nausea and tiredness are tough for me.

    Writing this in this forum is probably a way for me to try to gather strength to endure the trouble. :)

    Sten

  • jimwins
    jimwins Member Posts: 2,107
    Sten said:

    New period of Temodar going on now in September

    Yesterday Monday evening I started a new four day session of taking Temodar.

    Unfortunately it is quite bad. I could not sleep for half the night, and I felt nausea even in the morning. Today I have so far been able to eat a little youghurt and toast.

    It surprises me that the trouble has increased since I started taking Temodar 1 1/2 years ago.

    Tonight when I take the Temodar I will try a new medicine against nausea, Ondensatrone. I tried it once before in August, but it causes constipation and that was bad. Now I have got a laxative, Laxoberale, to ease constipation.

    The Temodar is scheduled for me for a total of two years, of which five months remain. Its purpose is to remove possible micro metastases and thus prevent a future relapse of my disease, primary central nervous system lymphoma (PCNSL).

    I want to follow the prescription and take Temodar for five more months, but the side-effects of nausea and tiredness are tough for me.

    Writing this in this forum is probably a way for me to try to gather strength to endure the trouble. :)

    Sten

    Hopefully it will get better

    Hi Sten.  Hopefully as you adjust to the meds and "tweak" for side effects, this will get better for you.  Please keep us updated.  I had a real problem at first with constipation and during/after treatment but I learned to start taking laxatives a day or two before I went in for treatment and for awhile after and that helped.  Drinking plenty of water is also good.

    Jim

  • Sten
    Sten Member Posts: 162
    jimwins said:

    Hopefully it will get better

    Hi Sten.  Hopefully as you adjust to the meds and "tweak" for side effects, this will get better for you.  Please keep us updated.  I had a real problem at first with constipation and during/after treatment but I learned to start taking laxatives a day or two before I went in for treatment and for awhile after and that helped.  Drinking plenty of water is also good.

    Jim

    Better today!

    Last evening I took Temodar plus the new anti-nausea medicine Ondansetrone plus the laxative Laxoberale to counteract the constipation side-effect of Ondansetrone. And it was a success! During the night and now in the morning I felt and feel much less nausea and I am not constipated! My sleep was still not good due to Temodar, but feeling so much less nauseous is a great relief! I am also less tired today than usual after Temodar, and I have completed two crosswords this morning which my wife started on. Now I feel hope that I can endure the rest of the time I should take Temodar, that is until January. This makes me really glad and in a good mood.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Sten said:

    Better today!

    Last evening I took Temodar plus the new anti-nausea medicine Ondansetrone plus the laxative Laxoberale to counteract the constipation side-effect of Ondansetrone. And it was a success! During the night and now in the morning I felt and feel much less nausea and I am not constipated! My sleep was still not good due to Temodar, but feeling so much less nauseous is a great relief! I am also less tired today than usual after Temodar, and I have completed two crosswords this morning which my wife started on. Now I feel hope that I can endure the rest of the time I should take Temodar, that is until January. This makes me really glad and in a good mood.

    Emend

    Sten,

    I took the older anti-nausea med Emend (aprepitant) in pill form with R-ABVD, and never had any nausea in my whole six months of treatment. I have heard that Emend is now usually given in the IV drip, and most patients who get it are not even aware of it, but for non-IV drugs it is still available in the pill form.  I never had any constipation issues.

    I do not know that EMend is any better than Ondansetron, but it did not cause constipation, and I never had the first hint of nausea, ever, so you may want to ask about it.

    max

  • Sten
    Sten Member Posts: 162

    Emend

    Sten,

    I took the older anti-nausea med Emend (aprepitant) in pill form with R-ABVD, and never had any nausea in my whole six months of treatment. I have heard that Emend is now usually given in the IV drip, and most patients who get it are not even aware of it, but for non-IV drugs it is still available in the pill form.  I never had any constipation issues.

    I do not know that EMend is any better than Ondansetron, but it did not cause constipation, and I never had the first hint of nausea, ever, so you may want to ask about it.

    max

    Nausea medicines

    Max,

    Thank you very much for your information!

    Emend could certainly be an alternative if I still have nausea.

    Earlier I took Primperan, and that was not efficient enough to cure my nausea. Today after my second round of Ondansetron I feel quite OK and I have no constipation thanks to Laxoberal. So for the time being I will stick to Ondansetron which obviously works for me. It is quite a relief to feel so much better, and to be able to look forward to future Temodar sessions with calm.

    Sten

  • Emend

    Sten,

    I took the older anti-nausea med Emend (aprepitant) in pill form with R-ABVD, and never had any nausea in my whole six months of treatment. I have heard that Emend is now usually given in the IV drip, and most patients who get it are not even aware of it, but for non-IV drugs it is still available in the pill form.  I never had any constipation issues.

    I do not know that EMend is any better than Ondansetron, but it did not cause constipation, and I never had the first hint of nausea, ever, so you may want to ask about it.

    max

    Emend and Dexamethasone (Decadron)

    I'm also taking the combination od the two drugs (Emend for 3 days and Dexamathasone for 4 days) and just like you Max, no nausea nor constipation. As I mentioned before, the two problems that I have with it are insomnia and high sugar levels. I live in Montreal, Canada and don't know if the same combination is given in USA. I hope they can do something for you Sten. I asked the nurse this past Tuesday during my chemo #5 what did patients do when this wasn't available and she sad it was very bad and that's one of the reasons why chemotherapy has such a bad reputation.

     

    Natasha

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member

    Emend and Dexamethasone (Decadron)

    I'm also taking the combination od the two drugs (Emend for 3 days and Dexamathasone for 4 days) and just like you Max, no nausea nor constipation. As I mentioned before, the two problems that I have with it are insomnia and high sugar levels. I live in Montreal, Canada and don't know if the same combination is given in USA. I hope they can do something for you Sten. I asked the nurse this past Tuesday during my chemo #5 what did patients do when this wasn't available and she sad it was very bad and that's one of the reasons why chemotherapy has such a bad reputation.

     

    Natasha

    Availability

    Natasha,

    I became good friends with a woman named Deborah when I was receivving my treatments. She had end-stage colorectal, which had gone also to the liver and lungs.  She went several times a week for infusions, and also had to take a pump home for treatments when at home.  She frequently asked for nausea meds while in the chair, and I asked her one day why she didn't take a systematic anti-nausea medication like EMend, and she said "My insurance won't pay for it."

    I have met other people whose insurance would not pay for neulasta or other WBC builders.  A sad state of affairs.

    Debrorah passed a few months after I last saw her on my last infusion.  She had wanted to see her five year old graduate kindergarden, but it was not meant to be.

     

    max

    .

  • Availability

    Natasha,

    I became good friends with a woman named Deborah when I was receivving my treatments. She had end-stage colorectal, which had gone also to the liver and lungs.  She went several times a week for infusions, and also had to take a pump home for treatments when at home.  She frequently asked for nausea meds while in the chair, and I asked her one day why she didn't take a systematic anti-nausea medication like EMend, and she said "My insurance won't pay for it."

    I have met other people whose insurance would not pay for neulasta or other WBC builders.  A sad state of affairs.

    Debrorah passed a few months after I last saw her on my last infusion.  She had wanted to see her five year old graduate kindergarden, but it was not meant to be.

     

    max

    .

    So sad...:(

    Max,

    Your story is so sad and it made me realise once again how lucky I am to be living in Canada and not my home country. My mom had breast cancer about 5-6 years ago and she was treated there. It was terrible and if I have to go into details it would be a few pages long! I don't have to pay for any of the chemo treatments and I also have a private insurance that pays 80% of the drug costs. It could be very costly having to buy Emend and Decadron every two weeks, then I have to get Metformin, two types of insulin, the needles and strips for the glucometer and so on.

    I hope Deborah is happy wherever she is right now and longer needs any medication...

    I also hope to be able to see my son say his first words, take his first steps, go to school and everything else. I can only hope and keep up my positive attitude which has helped allot so far.

    Natasha

     

     

  • Sten
    Sten Member Posts: 162

    So sad...:(

    Max,

    Your story is so sad and it made me realise once again how lucky I am to be living in Canada and not my home country. My mom had breast cancer about 5-6 years ago and she was treated there. It was terrible and if I have to go into details it would be a few pages long! I don't have to pay for any of the chemo treatments and I also have a private insurance that pays 80% of the drug costs. It could be very costly having to buy Emend and Decadron every two weeks, then I have to get Metformin, two types of insulin, the needles and strips for the glucometer and so on.

    I hope Deborah is happy wherever she is right now and longer needs any medication...

    I also hope to be able to see my son say his first words, take his first steps, go to school and everything else. I can only hope and keep up my positive attitude which has helped allot so far.

    Natasha

     

     

    Medicines

    Natasha and Max,

    I agree with Natasha that insomnia is a problem with chemos like Temodar. But I can stand insomnia better than nausea.

    I am content now with Ondansetron against nausea and Laxoberal for constipation caused by Ondansetron. My remaining problems with Temodar are insomnia for about half the night and tiredness the day after. I accept these problems and can endure them.

    I live in Sweden and here the government pays for your medication costs above about USD 400 a year and your doctor costs above about USD 200 a year. Stays in hospital cost you slightly more than USD 10 a day. This is good when you have a serious disease because everyone can afford the best treatment. Our taxes are higher than in the US but they have come down quite a bit the latest years with a new more right-wing government.

    Sten