Lomustine (CCNU)

OCMenno
OCMenno Member Posts: 26
edited March 2014 in Brain Cancer #1
Looking for anyone that has been treated with a chemotherapy drug called "Lomustine" or CCNU.

My 30 year old wife just had her second surgery to remove an anaplastic astrocytoma tumour (assuming it is still grade 3). She was diagnosed in 2006, followed by radiation and chemo. In 2006 she was on the temodar. After 3+ years the tumour came back, same location, slightly larger but deeper. The surgery went well, removed most, and the only other thing we know so far is that she will be treated with lomustine this time.

I have done little research on lomustine so far, but from what I have seen, it sounds like the side effects should be fairly similar to the temodar. The thing that I wonder about is we were told not long ago that temodar was the best thing for brain cancer. Does that mean they used the best the first time and now that the tumour had returned they will use the second best?

Again, before we get started with the treatments, I am just hoping to hear some real life experience with lomustine, as apposed to the generic information found on the common brain tumour sites.

Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    #2
    my husband was diagnosed
    my husband was diagnosed with an anaplastic astrocytoma grade 3 in 2000. he was inoperable. was treated with radiation and stereo tactic radiation. after radiation was put on tremodar. it was not effective for him. he then began a clinical trial which i cannot remember the name of and it shrunk the tumor but caused side effects but i believe was discontinued as he was the last one on it. his last chemo was procarbazine and ccnu. he has been cancer free for some time. he does have difficulties but am not sure that they are caused by the tumor as he has parkinson's as well. i do know that he has little feeling on his right side as his tumor was on the left side. he has double vision as well. he can no longer play golf which he loved until parkinson's caused enough disability that he could not play anymore. your choice is to go for it or not. you choose. my children, myself and my wonderful grandchildren still have him for nearly 10 years.
  • OCMenno
    OCMenno Member Posts: 26
    #3
    sue Siwek said:

    my husband was diagnosed
    my husband was diagnosed with an anaplastic astrocytoma grade 3 in 2000. he was inoperable. was treated with radiation and stereo tactic radiation. after radiation was put on tremodar. it was not effective for him. he then began a clinical trial which i cannot remember the name of and it shrunk the tumor but caused side effects but i believe was discontinued as he was the last one on it. his last chemo was procarbazine and ccnu. he has been cancer free for some time. he does have difficulties but am not sure that they are caused by the tumor as he has parkinson's as well. i do know that he has little feeling on his right side as his tumor was on the left side. he has double vision as well. he can no longer play golf which he loved until parkinson's caused enough disability that he could not play anymore. your choice is to go for it or not. you choose. my children, myself and my wonderful grandchildren still have him for nearly 10 years.

    No Lomustine after all
    Good news! I think. We were at the Cancer Centre most of the day yesterday. The team decided since it has been 2 years since my wife's last chemo, they would like to go with the same one again. Temozolomide (Temodar) instead of the Lomustine. They said the Lomustine is less effective and has more side-effects. In 2006 they started her on a low dose of Temodar which the tumor did not respond to (started to grow again), then after a while they increased the dosage to max, which then stopped the growth and kept it stable for the next 2+ years. So now, starting today, she is back on the Temodar at max dose. Hopefully this will take care of the 2 cm x 1 cm of the tumor that was left behind from surgery last week. My wife handled the Temodar very well last time so we are hoping for the same this time.
  • sue Siwek
    sue Siwek Member Posts: 279
    #4
    temodar
    best of luck to you both.
  • patriciam
    patriciam Member Posts: 39
    #5
    CCNU
    My 17 year old was diagnosed with AA3 in February 09. She had 6 weeks of radition and temador. Her cycles consists of CCNU and Temador. CCNU made her white blood cell count really low four weeks after she took it. The blood count stayed low for 2.5 weeks. She had bad stomach pain and nausea too. Meds helped with those side effects. Her CCNU dosage was lowered for her second cycle...she seemed to do better. Good luck to you.
  • OCMenno
    OCMenno Member Posts: 26
    #6
    patriciam said:

    CCNU
    My 17 year old was diagnosed with AA3 in February 09. She had 6 weeks of radition and temador. Her cycles consists of CCNU and Temador. CCNU made her white blood cell count really low four weeks after she took it. The blood count stayed low for 2.5 weeks. She had bad stomach pain and nausea too. Meds helped with those side effects. Her CCNU dosage was lowered for her second cycle...she seemed to do better. Good luck to you.

    All the best to you
    Thanks patriciam,
    Sorry to hear about your 17 year old. That is so young! We also have a 13 year old nephew with brain cancer. I'm not sure about the type, I believe it is a PNET. They have not given him much time and have decided not to do any further treatments. With my wife having brain caner (AA) as well, we try to support and encourage them as much as possible. We do the same for you. There are so many here on this site that have lived many, many years with brain cancer. Many of them diagnosed with AA. Please update us on her progress.
  • patriciam
    patriciam Member Posts: 39
    #7
    OCMenno said:

    All the best to you
    Thanks patriciam,
    Sorry to hear about your 17 year old. That is so young! We also have a 13 year old nephew with brain cancer. I'm not sure about the type, I believe it is a PNET. They have not given him much time and have decided not to do any further treatments. With my wife having brain caner (AA) as well, we try to support and encourage them as much as possible. We do the same for you. There are so many here on this site that have lived many, many years with brain cancer. Many of them diagnosed with AA. Please update us on her progress.

    AA3
    Thanks for the words of encouragement. My 17 year old is doing well. Her last MRI in early August was positive; no new growth and no changes. I wish you the best too!
  • Raani01
    Raani01 Member Posts: 70
    #8
    CCNU
    Hi, The doctor suggested to start CCNU for my husband as the temodar failed for him now. How is your wife doing now?
  • mlewis33
    mlewis33 Member Posts: 2
    #9
    Lomustine

    I am on Lomustine after two years of Temodar. I didn't have much of a problem with Temodar except temperment. I have had some neasua with CCNU and had to temporary stoppage in my treatment because my blood counts went down.

  • caregiver2013
    caregiver2013 Member Posts: 1
    #10
    mlewis33 said:

    Lomustine

    I am on Lomustine after two years of Temodar. I didn't have much of a problem with Temodar except temperment. I have had some neasua with CCNU and had to temporary stoppage in my treatment because my blood counts went down.

    Lomustine-Avastin

    Lomustine works in a similar way with Temodar. Avastin is silver bullet-next step.

  • falcon69
    falcon69 Member Posts: 24
    #11
    CCNU, no side effects

    My son began a treatment regimen consisiting of probarbazine, CCNU, and vincristine (pcv) in March. This was following a 2nd craniotomy for a recurrent oligodendroglioma gr II that returned as grade III. He has not yet completed his first cycle but he had no side effects at all from the CCNU (or any of the others). When I asked about using Temodar when the oncologist laid out PCV as the plan of treatment he replied that the PCV is the gold standard of treatment for oligo III.

  • ourvictory
    ourvictory Member Posts: 3
    #12
    CCNU for GBM IV

    I started CCNU two nights ago 5/7/13   took 2ondasetron/zofran no nausea or vomit, yesterday no problems this morning bereable fatigue 5/9 before I initially took temodar for about 14-15 months after craniotomy , gamma knife then avastin,irinotecan for about 6 mos. next avastin alone for about 6 mos. now avastin and ccnu and starting radiation next week ups andowns for the last 28 mos.

  • ourvictory
    ourvictory Member Posts: 3
    #13
    ourvictory said:

    CCNU for GBM IV

    I started CCNU two nights ago 5/7/13   took 2ondasetron/zofran no nausea or vomit, yesterday no problems this morning bereable fatigue 5/9 before I initially took temodar for about 14-15 months after craniotomy , gamma knife then avastin,irinotecan for about 6 mos. next avastin alone for about 6 mos. now avastin and ccnu and starting radiation next week ups andowns for the last 28 mos.

    CCNU

    Today Monday 5/13/2013. 6 days later only a little bit of  fatigue I am getting my blood count next week and my new radiation sessions tomorrow. After two years of no radiation surgery, temodar, irinotecan and avastin a helmet might show up in my future. keep posting as I will; thank you all !

  • ATomei
    ATomei Member Posts: 2
    #14
    ourvictory said:

    CCNU

    Today Monday 5/13/2013. 6 days later only a little bit of  fatigue I am getting my blood count next week and my new radiation sessions tomorrow. After two years of no radiation surgery, temodar, irinotecan and avastin a helmet might show up in my future. keep posting as I will; thank you all !

    CCNU

    Hi Guys,

     

    My Fiancee started CCNU 6weeks ago because of her AA3 growing after 6months of Temodar failing. Temodar wasn't responsive with her so they started CCNU.  After the first week of CCNU we noticed big improvements with her mobility, the tumor was affecting her motor function area making her left side weak to almost paralyzed. She is now moving almost 100%, i would say about 92%.  I'm hoping this CCNU can continue to work for her and keep shrinking this tumor.  She started her 2nd cycle of it last week.  I wanted to ask anyone here or who is familiar with CCNU, how long can she continue taking it?  If her body continues to tolerate it can she be on it for years? or hopefully shrink it to nothing?  Anyone with experience with the chemotherapy i would greatly appreciate your input.  I know like Temodar after long term use its possible to develop a secondary cancer but they say that risk is very low.  Her white blood cell count was bit low so they just lowered her dosage from 200mg to 160mg. I'm hoping this is the stuff that ll work for her, Ive noticed everyone reacts to different treatments differently. I wish everyone here the best of luck and hope through this crazy journey.  Have faith, believe miracles can happen and help will come.

     

    Adrian Tomei

    email -  adriantomei@gmail.com

  • Gibson123
    Gibson123 Member Posts: 1
    #15
    ATomei said:

    CCNU

    Hi Guys,

     

    My Fiancee started CCNU 6weeks ago because of her AA3 growing after 6months of Temodar failing. Temodar wasn't responsive with her so they started CCNU.  After the first week of CCNU we noticed big improvements with her mobility, the tumor was affecting her motor function area making her left side weak to almost paralyzed. She is now moving almost 100%, i would say about 92%.  I'm hoping this CCNU can continue to work for her and keep shrinking this tumor.  She started her 2nd cycle of it last week.  I wanted to ask anyone here or who is familiar with CCNU, how long can she continue taking it?  If her body continues to tolerate it can she be on it for years? or hopefully shrink it to nothing?  Anyone with experience with the chemotherapy i would greatly appreciate your input.  I know like Temodar after long term use its possible to develop a secondary cancer but they say that risk is very low.  Her white blood cell count was bit low so they just lowered her dosage from 200mg to 160mg. I'm hoping this is the stuff that ll work for her, Ive noticed everyone reacts to different treatments differently. I wish everyone here the best of luck and hope through this crazy journey.  Have faith, believe miracles can happen and help will come.

     

    Adrian Tomei

    email -  adriantomei@gmail.com

    CCNU and Avastin

    My wife has GBM grade 4 .

    she  is on Avastin since  June 2012 and yesterday Sept 26 started CCNU  180 mg.

    Today we noticed problem with her speach and  late this evening  had hard time walking, lost sense of balance.

    This has happened after only one day being on CCNU. 

    Please any feed back..  thanks

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