Brain Tumour Caused by Leukemia

maca2004
maca2004 Member Posts: 13
in Brain Cancer #1

Hi 

I am writing on behalf of my partner, who is female and was diagnosed with cancer of the ovaries approximately 7 years ago whilst pregnant. 

After delaying treatment to protect the baby she had an operation to remove the ovaries/tumour followed by a course of chemotherapy.  She has been in remission ever since. 

On 29th August (2012) last year, the day before her 42nd birthday, she was diagnosed with Chronic Lymphatic Leukaemia.  It was in the advanced stages of III/IV with an enlarged spleen. 

Unbeknown at the time but a tumour had developed in her spine and brain. 

She started her course of chemotherapy of fludarubine on 3rd September. 

Her second course of chemotherapy commenced on 8th October. 

She reacted badly to both sessions of chemo. 

There were no improvements on her blood counts and her spleen remained swollen. 

She had a splenectomy on 7th December. 

A third round of chemo with a biological agent was planned.

However, prior to this an MRI scan was carried out on the 10th Januray 2013. The tumours (especially in the brain) had grown at a rapid rate. 

She was now informed of the tumours and told they were life threatening. The tumour on her brain could not be completely removed by surgery and there was a high risk of leaving her paralysed and/or blind.  The tumour would inevitably grow back. 

She was informed that chemotherapy alone would not be enough.  She was left with the decision of quantity versus quality of life.  She has now refused all further treatment and has decided to let nature take its course.  Her prognosis is 6-12 months left of life. 

I appreciate the above is a brief profile and I’ve tried to write it as emotionless as I can.  Would anybody have any advice, suggestions in short any ideas on what we could do?  

I am unsure how the leukaemia has caused these tumours and I am not sure what tumours they are except to say the one in the brain is at the back of the skull. 

Regards Neil

Comments

  • manwithnoname
    manwithnoname Member Posts: 402
    #2
    we are

    with this guy, http://www.youtube.com/watch?v=FzrHS5YgbbE

  • jalu
    jalu Member Posts: 58
    #3
    manwithnoname said:

    we are

    with this guy, http://www.youtube.com/watch?v=FzrHS5YgbbE

    MANWITHNONAME, THANK YOU

    for the information.  This is really THE first information I have seen addressing a CURE to metastasized cancer -- rather than just treatment.  You say, you are with this guy.  Are you going to Israel or have you found this treatment in the United States?  Who can administer this treatment here in the United States?

  • manwithnoname
    manwithnoname Member Posts: 402
    #4
    jalu said:

    MANWITHNONAME, THANK YOU

    for the information.  This is really THE first information I have seen addressing a CURE to metastasized cancer -- rather than just treatment.  You say, you are with this guy.  Are you going to Israel or have you found this treatment in the United States?  Who can administer this treatment here in the United States?

    You are

    welcome, we live in Israel luckily, I haven't found anyone else doing this kind of treatment, maybe some Chinese hospitals do similar things, I trust Israel more...

  • maca2004
    maca2004 Member Posts: 13
    #5
    notes for oncologist apointment

    Notes for Oncologist Meeting

    1.    Ask for a second opinion from another oncologist and another neurologist.  You also want to see a neuro-oncologist (brain tumour specialist).

    2.    What type of tumour is it, what grade is it and where is it located?  Need to know exactly what these tumours are and how they have formed.

    3.    When discussing treatment (such as PDT), especially if he is dismissive, ask him what experience he has etc with this treatment.

    4.    Request to be considered for any clinical trials.

    Potential Non-invasive, Low Risk, Few Side Effect Treatments

    Tumour(s)

    PhotoDynamic Therapy

    It’s suitable for ‘near’ surface tumours including brain tumours and is available on the NHS.

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx#DynamicJumpMenuManager_6_Anchor_7

    It has been used to treat early cancers and to help reduce more advanced tumours.

    There is a clinic in London, The Dove Clinic, offering this treatment coupled with sonic waves to help reach deeper tumours.  It may be possible if your GP agrees to have this treatment funded by the NHS.

    I believe the closest NHS hospital offering this treatment is Leeds.

    Temozolomide

    An oral alkylating agent used for brain tumours.  Not without long term side effects – it is a form of chemo taken orally.

    Bevacizumab (Avastin)

    A type of monoclonal antibody used to treat brain tumours (glioblastoma). No long term side effects.

    Immune Therapy

    Immunepheresis and other immune therapies remove the cancer cell's inhibitors, allowing the body's natural immune system to rid the tumor / cancer cells.  Can help to reduce solid tumours and can be more effective than chemo and radiation without the side effects.

    http://en.wikipedia.org/wiki/Immunotherapy

    Dendritic Cell Vaccine is a type of immune therapy used for brain tumours - http://www.cancer.ucla.edu/index.aspx?recordid=446&page=644


     

    Tumour Treating Fields

    Approved by the FDA it uses alternating current to create an electric field which interrupts rapid cell division displayed by cancer cells.

    http://en.wikipedia.org/wiki/Tumor_Treating_Fields

    Leukaemia

    Monoclonal Antibodies

    They work by targeting a protein on white blood cells this triggers the immune system into destroying them.

    Alemtuzumab (Mabcampath – brand name) is approved to be used on its own where a patient is not suitable for fludarabine (chemo).

     Alemtuzumab – info on Macmillan website

    More Aggressive Treatments

    Tumour(s)

    Stereotactic Radiotherapy

    Used for secondary brain tumours, it’s a more targeted radiotherapy regime that damages much less healthy brain cells.

    http://www.cancerresearchuk.org/cancer-help/type/brain-tumour/treatment/radiotherapy/stereotactic-radiotherapy-for-brain-tumours

    A type of stereotactic radio therapy is radiosurgery used for early brain tumours.

    http://www.cancerresearchuk.org/cancer-help/type/brain-tumour/treatment/radiotherapy/radiosurgery-for-brain-tumours

    Leukaemia

    Autologous transplant (full or mini transplant)

    During an autologous stem cell transplant, stem cells are harvested from the patient before they receive chemotherapy and/or radiation therapy to treat a cancer. These stem cells may be purified and purged of any tumour cells that might be collected with them. After undergoing therapy, the patient receives his/her own stem cells.

    General – Biological & Gene Therapies

    List of biological therapies can be found at:

    http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/biological/types/

    Includes:

    ·         Biological Response Modifiers (BRMs)

    ·         Biologic agents

    ·         Biologics

    ·         Targeted therapies

    ·         Immunotherapy

    Information for gene therapy can be found at

    http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/biological/types/gene-therapy

    I think they are only available as a clinical trial.

    Would be worth discussing biological/gene therapy as a general discussion.

  • maca2004
    maca2004 Member Posts: 13
    #6
    manwithnoname said:

    we are

    with this guy, http://www.youtube.com/watch?v=FzrHS5YgbbE

    thank you

    many of the topics discussed by CTCI is what we have been looking at here in the UK under the NHS. However, our oncologist as effectively denied us access to any alternative therapies stating they will not work in our case. When pressed he admitted hed had no knowledge or experience of these treatments.

    Manwithno name...would it be possible to provide us with a brief profile of your illness and treatment protocol etc.

    I shall add my notes that we made for the oncologist to this post.

  • manwithnoname
    manwithnoname Member Posts: 402
    #7
    maca2004 said:

    thank you

    many of the topics discussed by CTCI is what we have been looking at here in the UK under the NHS. However, our oncologist as effectively denied us access to any alternative therapies stating they will not work in our case. When pressed he admitted hed had no knowledge or experience of these treatments.

    Manwithno name...would it be possible to provide us with a brief profile of your illness and treatment protocol etc.

    I shall add my notes that we made for the oncologist to this post.

    sure

    my 6yr old dx 2009 with anaplastic ependymoma, had surgery, gtr, RT 54gy, he has reccurred now 4 times, one tumour now inoperable due to location. No chemo as none work on this.

    We are paying privatley for the immunotherapy. 

  • maca2004
    maca2004 Member Posts: 13
    #8
    manwithnoname said:

    sure

    my 6yr old dx 2009 with anaplastic ependymoma, had surgery, gtr, RT 54gy, he has reccurred now 4 times, one tumour now inoperable due to location. No chemo as none work on this.

    We are paying privatley for the immunotherapy. 

    good luck

    and sorry to hear about your son.  As I write today we are in the process of receiving a second opinion...with immunetherapy being on the agenda.

    I shall endeavour to update anything useful that comes from this appointment.  The new oncologist seems to be knowledgeable with regard to alternative treatments.

    In the meantime I shall add my notes which I made of various drugs/treatments that some may find useful. 

  • maca2004
    maca2004 Member Posts: 13
    #9
    various treatments/drugs
    Just a few points and options for treatment.

     

    Tumour Treating Fields (mentioned in my notes) have been approved by the FDA for use in treating glioblastoma (type of brain tumour). Just wondering if the NHS have adopted this treatment protocol.

     

    A link to an article about TTF:


     

    Various non-toxic tablets repress the growth of tumours are:

     

    Tamoxifen - being heralded as a break through in the treatment of breast cancer it can be used to brain tumours. it inhibits a protein production that certain cancerous cells need to grow


     

    Thalidomide - restricts the development of blood vessels, which tumours require to grow


     

    Gleevac (also known as STI-517) is another growth factor inhibitor. Developed to treat a rare from of Leukaemia and childhood Leukaemia an be used for brain tumours.


     

    Endostatin/Angiostatin - complex proteins that have an antangiogenesis affect (inhibit recruitment of blood vessels by the tumour).


     

    Accutane - blocks the receptor for epidermal growth factor signal, a catalyst in some brain tumour cell division.


     

    Gamma-linolenic acid (GLA) - produces a lethal level of free radicals inside cancer cells and activates genes that produce cell differentiation.

    http://www.fightcll.org/2010/12/gamma-linolenic-acid-cancer-fighter.html - can be used for leukaemia and brain tumours

     

    Useful link well worth a read - lists some of the above treatments plus others


     

    The following can help boost the immune system:

     

    Melatonin - free from any toxic side effects


     

    PSK - an extract from a japenese mushroom used to help boost the immune system and been used in Japan for decades to treat cancer


     

    A usefuk link to a pdf file written by Ben Williams (Brain Tumour Survivor) on latest treatments etc

  • manwithnoname
    manwithnoname Member Posts: 402
    #10
    maca2004 said:

    various treatments/drugs

    Just a few points and options for treatment.

     

    Tumour Treating Fields (mentioned in my notes) have been approved by the FDA for use in treating glioblastoma (type of brain tumour). Just wondering if the NHS have adopted this treatment protocol.

     

    A link to an article about TTF:


     

    Various non-toxic tablets repress the growth of tumours are:

     

    Tamoxifen - being heralded as a break through in the treatment of breast cancer it can be used to brain tumours. it inhibits a protein production that certain cancerous cells need to grow


     

    Thalidomide - restricts the development of blood vessels, which tumours require to grow


     

    Gleevac (also known as STI-517) is another growth factor inhibitor. Developed to treat a rare from of Leukaemia and childhood Leukaemia an be used for brain tumours.


     

    Endostatin/Angiostatin - complex proteins that have an antangiogenesis affect (inhibit recruitment of blood vessels by the tumour).


     

    Accutane - blocks the receptor for epidermal growth factor signal, a catalyst in some brain tumour cell division.


     

    Gamma-linolenic acid (GLA) - produces a lethal level of free radicals inside cancer cells and activates genes that produce cell differentiation.

    http://www.fightcll.org/2010/12/gamma-linolenic-acid-cancer-fighter.html - can be used for leukaemia and brain tumours

     

    Useful link well worth a read - lists some of the above treatments plus others


     

    The following can help boost the immune system:

     

    Melatonin - free from any toxic side effects


     

    PSK - an extract from a japenese mushroom used to help boost the immune system and been used in Japan for decades to treat cancer


     

    A usefuk link to a pdf file written by Ben Williams (Brain Tumour Survivor) on latest treatments etc

    This;

    http://musli.co.il/eng/index.html

    I would start her on L-cysteine and L-arginine supplements, also Melatonin, http://www.biobran.org  this is available in  the UK.

    Also look for DCA.

  • I_Promise
    I_Promise Member Posts: 218 Member
    #11
    Dr. Shimon Slavin

    Thank you for the info about this doctor and his immunological center. It might be what I have been looking for. My sister has a stable anaplastic astrocytoma after conventional therapy (surgery, radiation, Temodar). But we are eager to strike while the disease is minimal.

    Could you tell me how much it costs and what treatment has your 6 years old daughter been put on? Any info would be a huge help. Thank you.

    Julia

     

  • manwithnoname
    manwithnoname Member Posts: 402
    #12
    I_Promise said:

    Dr. Shimon Slavin

    Thank you for the info about this doctor and his immunological center. It might be what I have been looking for. My sister has a stable anaplastic astrocytoma after conventional therapy (surgery, radiation, Temodar). But we are eager to strike while the disease is minimal.

    Could you tell me how much it costs and what treatment has your 6 years old daughter been put on? Any info would be a huge help. Thank you.

    Julia

     

    Hi Julia

    My son is now 9, we are doing a semi-allogenic Denritic tumour vaccine, then every 2 weeks he gets another injection of tumour lysate and NDV virus for about 6 months, adjuvants incude PolyICLC, Imiquimod, and Gc-maf , he also gets metronomic Cyclophosphamide every 6 days, Thalidomide daily and amino acids and supplements. He is also having DCA @ 6.25mg/kg

    We are throwing in the kithchen sink too...

    The vaccine is $35,000 the drugs are free from our oncologist and we buy the supplements ourselves.

    He has much more interesting treatments than those on his website, he will really go all out with the most cutting edge (unapproved) immunotherapies, he will also reccommend chemo and/or radiation if the tumour is large.

    I HIGHLY reccommed you to have a consultation. It cost's but it's worth it.

  • I_Promise
    I_Promise Member Posts: 218 Member
    #13
    manwithnoname said:

    Hi Julia

    My son is now 9, we are doing a semi-allogenic Denritic tumour vaccine, then every 2 weeks he gets another injection of tumour lysate and NDV virus for about 6 months, adjuvants incude PolyICLC, Imiquimod, and Gc-maf , he also gets metronomic Cyclophosphamide every 6 days, Thalidomide daily and amino acids and supplements. He is also having DCA @ 6.25mg/kg

    We are throwing in the kithchen sink too...

    The vaccine is $35,000 the drugs are free from our oncologist and we buy the supplements ourselves.

    He has much more interesting treatments than those on his website, he will really go all out with the most cutting edge (unapproved) immunotherapies, he will also reccommend chemo and/or radiation if the tumour is large.

    I HIGHLY reccommed you to have a consultation. It cost's but it's worth it.

    what kind of cancer your son has, when he was diagnosed and what kind of treatment he had before immunotherapy.

    The treatment that your son is on is what I have been wanting for my sister. All of my readings pointed towards vaccine and POLYICLC and other adjuvants. I am excited that it IS available! I wrote a request for a consultation.

    I have been writing to so many doctors and everytime she does not qualify for a clinical trial because her anaplastic astrocytoma is "stable". Maybe this is the ONE. We will find the money.

     

    Julia

  • manwithnoname
    manwithnoname Member Posts: 402
    #14
    I_Promise said:

    what kind of cancer your son has, when he was diagnosed and what kind of treatment he had before immunotherapy.

    The treatment that your son is on is what I have been wanting for my sister. All of my readings pointed towards vaccine and POLYICLC and other adjuvants. I am excited that it IS available! I wrote a request for a consultation.

    I have been writing to so many doctors and everytime she does not qualify for a clinical trial because her anaplastic astrocytoma is "stable". Maybe this is the ONE. We will find the money.

     

    Julia

    Our son

    has had 5 surgeries and RT 54 Gy he also had NDV virus for 6 months. His tumour is anaplastic ependymoma grade 3 (supratentorial)

    He also uses Gc-maf and DCA, check them out.

    No one else is using Poly ICLC (outside of a trial)  and we will be his first.

  • scorpio79
    scorpio79 Member Posts: 25
    #15
    Hello
    my brother in law has

    Hello

    my brother in law has anaplastic Oligodendroglioma stage 3...he has had 3 operations so far....the cancer cells have spread to the meningis rather all over the meningis...is there a particular time this treatment needs to be provided...where can i get more information...thanks

  • manwithnoname
    manwithnoname Member Posts: 402
    #16
    scorpio79 said:

    Hello
    my brother in law has

    Hello

    my brother in law has anaplastic Oligodendroglioma stage 3...he has had 3 operations so far....the cancer cells have spread to the meningis rather all over the meningis...is there a particular time this treatment needs to be provided...where can i get more information...thanks

    Hi Scorpio

    treatments like this work best at minimal disease, Im no expert you can talk to the professor about the situation.

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