Metastasis Brain Cancer

ondrey
ondrey Member Posts: 1
edited March 2014 in Brain Cancer #1
in May 2002 my husband had surgery for colorectal cancer. It has spread to the lymph nodes so had radiation and chemo for 6 weeks. Then in October he had chemo again for 4 months. In May of 2003 he found the cancer had metastasis to the brain, a large tumor in the cerebellum and a smaller one in the thalamus.

He immediately went through 12 full head radiation treatments. The tumors were too larger to operate on. He started getting worse in August and the dr. said the tumors had reduced enough to have gamma knife surgery. He did great for 4 weeks but it has been down hill since. At one point he was on 36 mg. of Decadron. He is now down to 16 mg. of Decadron a day. The problem is he has to use a wheel chair all the time now. Sleeps a lot and has more bad days than good days. His neurologist has him on DIlantin and is just watching him now. The MRI looks good and no new tumors. The oncologist wants to start a series of chemo treatments as soon as he is strong enough. At this rate that may be never. We don't understand why he is so weak, no energy, blurred vision, passes out easily when he stands over 3/4 min. at a time? Does any one have any ideas or have you been through this. It.s going on 5 months since the gamma surgery. It seems he should be improving.

Comments

  • mrsbe
    mrsbe Member Posts: 57
    #2
    Hi there ondrey. Wow the 2 of you have had a time of this nasty diease huh. As to your questions you posted....why so weak and passes out and blurred vision...i may bave some suggestions as to being a primary brain cancer survivor myelf. The hole brain radiation is very intense and that alone could attribte to his tiredness. rember just because he may not have any visible scars means nothing. His brain has been truamtized from the radiation and the gamma knife and it can take along time for the brain to reroute its normal functions i was told up to 3 years. Now the passing out after 3 or 4 min of standing....my first thought is a CSF leak (cerable spinal cord leak. I had a friend that had this. They can inject contrast and do a spinal tap to make certain if this is the cause. Blurred vision would be something affecting the 6th crinial nerve this could be damage from the radiation or a number of other reasons. The decadron he is taking is to prevent swelling in the brain and trust someone who has taken the stuff. It makes you feel wierd. The dialantin i also took as a preventive measure against seizures. I would let him rest as necessary. Its a tiredness you cant explain. I just called it ground zero when it happend to me and i would go and lay down. I would definatly call you doc on the passing out issue and see if he can check for a CSF leak. Im not a doctor so dont take my posting as such. However, when i was going through this i appreciated every response.
    I wish you and your husband wellness.

    MrsBe
  • qhd2001
    qhd2001 Member Posts: 1
    #3
    Dear Ondrey,

    My mother had breast cancer met to the brain, was on decadron, and had similar side effects, incl. diabetes (type II), blurred vision/glaucoma, fatigue, weak esp in the hip area, slept all day, emotionally off, and was mentally absent. All the side effects are most likely linked to the steroid use. After tapering her use and then finally tkaing her off, there was a stark difference. She was almost immediately physically, emotionally and mentally better. Steroids had been used to control her ataxia. Although she still has some ataxia,we had to make a judgement call and decided ataxia was a condition she would have to live with. I would ask your radiologist and primary oncologist as to which part of the ataxia is due to temporary brain swelling from radiation and which part is permanent. Because if it is permanent, I don't think steroids should be used in the long-term. We also consulted our neurologist and he rold us to basically try to get her off of steroids as soon as possible. Obviously, our conditions aren't exactly comparable and I think it's best to both work closely with your doctors and make a judgement call.

    Best and good luck
  • catsinfl
    catsinfl Member Posts: 3
    #4
    qhd2001 said:

    Dear Ondrey,

    My mother had breast cancer met to the brain, was on decadron, and had similar side effects, incl. diabetes (type II), blurred vision/glaucoma, fatigue, weak esp in the hip area, slept all day, emotionally off, and was mentally absent. All the side effects are most likely linked to the steroid use. After tapering her use and then finally tkaing her off, there was a stark difference. She was almost immediately physically, emotionally and mentally better. Steroids had been used to control her ataxia. Although she still has some ataxia,we had to make a judgement call and decided ataxia was a condition she would have to live with. I would ask your radiologist and primary oncologist as to which part of the ataxia is due to temporary brain swelling from radiation and which part is permanent. Because if it is permanent, I don't think steroids should be used in the long-term. We also consulted our neurologist and he rold us to basically try to get her off of steroids as soon as possible. Obviously, our conditions aren't exactly comparable and I think it's best to both work closely with your doctors and make a judgement call.

    Best and good luck

    It sounds like I have exactly what your mother has. I was found with breast cancer in August had the breast surgery the Chemo and was just getting ready to start my final round with radiation to the breast and they found that I had three brain tumors so instead of radiation to the breast I am getting it to the brain. I am supposed to go to Shands in Gainsville Florida for the gamma ray knife and am very apprehensive about that for obvios reasons I had yet to find anyone with exactly the same diagnosis as mine and get some insight would love to chat with your mom. catsinfl@aol is my email.
  • miguelagon
    miguelagon Member Posts: 4
    #5
    My name is Miguel and iwas taken dillantin and i kind of have the same simptons and my doctor change my prescription to tegretol talk to your doctor see what he thinks also what helps a lot right now especially going thru radiation is takin 2 ounces of aloe gel every morning and u can get them at GNC for like 7 dollars.Talk to him see what he thinks and let me know if i helped Miguelagon305@hotmail.com
  • orville
    orville Member Posts: 3
    #6
    miguelagon said:

    My name is Miguel and iwas taken dillantin and i kind of have the same simptons and my doctor change my prescription to tegretol talk to your doctor see what he thinks also what helps a lot right now especially going thru radiation is takin 2 ounces of aloe gel every morning and u can get them at GNC for like 7 dollars.Talk to him see what he thinks and let me know if i helped Miguelagon305@hotmail.com

    My name is Orville. I was diagnosed with a Grade IV malignant tumor in early March. I had the tumor removed on March 5th, but two remaining tumors required radiation which I am undergoing now. I am on Dilantin and Decradron. I have developed a very weak right leg and arm and am very tired and am experiencing some mental confusion. I will have 7 weeks or radiation and and a oral chemotherapy medication called Temodar. I take it 5 nights a week and have weekends off. The prognosis for me was not good, but hopefully the radiation and chemotherapy will slow down the progressing of my disease. I will be 80 years old in May. My wife is taking care of me and it is a full time job as we go for radiation every day and medication takes up most of my day.
  • dsb9182
    dsb9182 Member Posts: 9
    #7
    About brain metastasis

    Dear all,

    Here I am sheshraj , my collegue had breast cancer she has taken 8 to 9 cycles of chemo with herceptine but after 6 months of complition of her treatment she suddenly had headache, then went through MRI contras and found metastasis in right cereberall and right high fronto perietal region so had WBRT now again following chemo for 6 weak please suggest me any best way to regain her health my. You can mail me on dsb9182@gmail.com

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    edited June 2017 #8
    Pertuzumab, trastuzumab and docetaxel?

    Dear dsb9182,

    I am so sorry to hear about your colleague. Once the disease migrates to the brain, the difficulty to manage it increases, as most of the present drugs have low permeability to the brain, and treatment like WBRT has its own side effect.

    Assuming she had a Her-2 positive disease, did your colleague try pertuzumab, trastuzumab and docetaxel combo? Also, see whether she can sign up in an ongoing clinical trial. The details are here:

    https://ehoonline.biomedcentral.com/articles/10.1186/s40164-015-0028-8

    Since this is a very old thread, you may want to open a new one.

    I wish her the best.

  • dsb9182
    dsb9182 Member Posts: 9
    #9
    MyJourneywithCancer said:

    Pertuzumab, trastuzumab and docetaxel?

    Dear dsb9182,

    I am so sorry to hear about your colleague. Once the disease migrates to the brain, the difficulty to manage it increases, as most of the present drugs have low permeability to the brain, and treatment like WBRT has its own side effect.

    Assuming she had a Her-2 positive disease, did your colleague try pertuzumab, trastuzumab and docetaxel combo? Also, see whether she can sign up in an ongoing clinical trial. The details are here:

    https://ehoonline.biomedcentral.com/articles/10.1186/s40164-015-0028-8

    Since this is a very old thread, you may want to open a new one.

    I wish her the best.

    New Fact

    To, 

    Myjourneywithcancer,

    New thing came ahead that some consultant say it is not confirmed either it is metastasis bcoz firts MRI says- The above intra axial lessions with perifocal edema in R.Cerebellar and R.H.fronto perietal regions more likely represent the diff.diagnosis of Metastasis than Haemangioblastoma or Granuloma.

    Latest MRI Says- differential includes

    1) Metastatic lessions

    2)Granulomatous etiology

    3)Cerebral lessions could represent Primary CNS Malignancy (Pilocytic Astrocytoma/Haemangioblastoma)

    and size of cerebral lession is reduced by near about 1cm than in first MRI

    We are confused what should do , which tests should be done to proper dignosis please assist me as early as you can

     

    3)

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #10
    dsb9182 said:

    New Fact

    To, 

    Myjourneywithcancer,

    New thing came ahead that some consultant say it is not confirmed either it is metastasis bcoz firts MRI says- The above intra axial lessions with perifocal edema in R.Cerebellar and R.H.fronto perietal regions more likely represent the diff.diagnosis of Metastasis than Haemangioblastoma or Granuloma.

    Latest MRI Says- differential includes

    1) Metastatic lessions

    2)Granulomatous etiology

    3)Cerebral lessions could represent Primary CNS Malignancy (Pilocytic Astrocytoma/Haemangioblastoma)

    and size of cerebral lession is reduced by near about 1cm than in first MRI

    We are confused what should do , which tests should be done to proper dignosis please assist me as early as you can

     

    3)

    Let's be hopeful

     

    First of all, if her tumors are shrinking that’s great! In absence of major side-effect, I am guessing her oncologist is most likely to continue with existing treatment.

     

    As for the MRI reports, the conditions mentioned are very rare in adults (how old is your colleague?) and less aggressive, but before jumping into conclusion, further observation from some independent techniques are needed. And a discussion with the oncologist about a sensible treatment flow-chart may be considered, so that next regime(s) is already planned for anticipation of a disease progression.

     

    Has any genomic profiling from biopsy, blood or circulating tumor DNA been done?

     

  • dsb9182
    dsb9182 Member Posts: 9
    #11
    About Genome

    To,

    Myjourneywithcancer,

     We didnt have any test

     

     

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #12
    Highly recommend

    I would highly recommend that, because any actionable alteration detected can lead to targeted therapy, especially those where blood-brain barrier is not an issue.

    Genomic study will also provide us with an idea about how fast tumor cells are changing their genes, which can be useful in an immunotherapy decision.

  • dsb9182
    dsb9182 Member Posts: 9
    edited July 2017 #13
    Genomic study will be best to Diagnose

    So you think Genomic study will be the best to detect all the possibilities releated to disease i.e. either it is Metastasis or not, how much It is spread up inside ?

     

  • dsb9182
    dsb9182 Member Posts: 9
    #14
    Age

    Her age is 35 yrs, now after WBRT She doesnt have any side effect. Her WBRT is completed on 17 may 2017 latest MRI is done on 27 June 2017.

    And her oncologist is giving her,

    Gemcitabin 1400mg

    Ciplatin 50mg

    Mannitiol

    Nacl

    Kcl

    DNS

    NS

    and some tablets as per her condition after every 8 days

    Clinical tests are ER-PR-HER-2+

     

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #15
    dsb9182 said:

    Genomic study will be best to Diagnose

    So you think Genomic study will be the best to detect all the possibilities releated to disease i.e. either it is Metastasis or not, how much It is spread up inside ?

     

    Hi dsb9182

    Not much about metastasis or how much it has spread, a genomic profile will be useful to reveal molecular changes and thus potential treatment target(s). It can be done from existing biopsies, but in this particular case, that might restrict us to older samples from the breast, which may not reflect the current prevalent mutation status, because cancer evolves. But it is worth a try. Second benefit of genomic study is to get an idea about rate of DNA mismatch repair in tumors. Some immuno-therapies, like Keytruda, are FDA approved for diseases with deficiency in the mismatch repair mechanism, and has very high efficacy in certain breast and brain cancers.

  • dsb9182
    dsb9182 Member Posts: 9
    #16
    About Genome

    So we must go through genome ?

    Ok thanks 

     

  • dsb9182
    dsb9182 Member Posts: 9
    #17
    To my journey with cancer,

    To my journey with cancer,

    Yesterday She hv done pet ct and reports say that only cystic lession appear in cerabral portion, so Dr. Said that there is no any sympotoms of cancer in brain for now so its best time for surgery of breast ....

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #18
    That's great!
    Welcome back and thank you for your update.
    I wish her a swift recovery from a successful surgery.
    Since this is also an opportunity for reviewing her genomic profile, please ask her onco whether it will be possible to send samples at this stage.
  • dsb9182
    dsb9182 Member Posts: 9
    #19
    Hi,,,

    Ok ,We will  discuss further...

    Thanks for your warm wishes..

  • dsb9182
    dsb9182 Member Posts: 9
    edited August 2017 #20
    About Surgery,

    About Surgery,

     Surgery had been done on Thursday,, Salvage Mastectomy....

  • SOG
    SOG Member Posts: 3
    #21
    dsb9182 said:

    About brain metastasis

    Dear all,

    Here I am sheshraj , my collegue had breast cancer she has taken 8 to 9 cycles of chemo with herceptine but after 6 months of complition of her treatment she suddenly had headache, then went through MRI contras and found metastasis in right cereberall and right high fronto perietal region so had WBRT now again following chemo for 6 weak please suggest me any best way to regain her health my. You can mail me on dsb9182@gmail.com

    Same diagnosis ER/PR- Her2+ Stage IV brain metastasis

    Dear dsb9182,

     I hope you coleague is doing well after mastectomy. I am here looking for information in cases of patients with same diagnosis Breast Cancer Stage IV, ER/PR- Her2+ who had Whole Brain radiation for brain metastasis. My treatment was  4 months of Taxol -Herceptin and Perjeta (Dec/2016 to March/2017) then continued o Herceptin Perjeta until present, no evidence of systematic disease but multiple lesions on the brain (20), only treatment option given was WBRT and I am really scare to do it. I am researching on how much more time will give me and if it is worth the time gained x side effects.  Did she have any permanent Side Effect of Whole brain radiation? do you know why in her case Radiosurgery (gamma knife) was not an option? Thank you.

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