CLL plus Tumours to Spine and Brain - Chronic Lymphatic Leukaemia

maca2004
maca2004 Member Posts: 13
in Leukemia #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

  • nempark
    nempark Member Posts: 681
    #2
    LET NATURE TAKE IT'S COURSE

    OH! my God I really feel my heart hurt for all of you.  I really don't have any professional advice for you but, from what you said she decided to let nature take it's course.  My daughter has passed 2 months now and her meds did not work for her Docs tried a new med and that did not do anything for either just she was in a coma state all the time just for a few days.  So If your partner wants to let nature take it's course, I think you should go with that.  I pray that she and the rest of the family enjoy what is left.  I am so sorry Neil.  By the way, if she is in any pain the docs will make sure that they take care of that.  Best wishes and stay strong.  This is all part of the cycle of life, unfortunately.  May God give you the strength to carry on with power beyond what is normal.  My daughter was the same age, she also had Leukemia.  Please read the following Scripture for her:

    (Isaiah 41:10) Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.’

     

     

  • maca2004
    maca2004 Member Posts: 13
    #3
    nempark said:

    LET NATURE TAKE IT'S COURSE

    OH! my God I really feel my heart hurt for all of you.  I really don't have any professional advice for you but, from what you said she decided to let nature take it's course.  My daughter has passed 2 months now and her meds did not work for her Docs tried a new med and that did not do anything for either just she was in a coma state all the time just for a few days.  So If your partner wants to let nature take it's course, I think you should go with that.  I pray that she and the rest of the family enjoy what is left.  I am so sorry Neil.  By the way, if she is in any pain the docs will make sure that they take care of that.  Best wishes and stay strong.  This is all part of the cycle of life, unfortunately.  May God give you the strength to carry on with power beyond what is normal.  My daughter was the same age, she also had Leukemia.  Please read the following Scripture for her:

    (Isaiah 41:10) Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.’

     

     

    So sorry to hear about your

    So sorry to hear about your daughter.  I have accpeted her decision to let nature take its course and support her in any way I can. I just don't want to sit back and do nothing.  I wouldn't be able to live with myself if I discovered some potential treatment and it was too late. And in a way it's helping me.

    She is in good spirits and a true inspiration. One day they'll be a cure and others will not suffer as we must.

  • maca2004
    maca2004 Member Posts: 13
    #4
    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
    #5
    oncologist appointment

    the above are notes taken today to discuss possible treatments with our oncologist.

    he dismissed the treatments as not being the 'first' line treatments and said they wouldn't be suitable anyway. when questioned he admitted he'd no experience nor had he used any of these treatments. further more he refused to refer us to a neuro-oncologist. 

  • nempark
    nempark Member Posts: 681
    #6
    maca2004 said:

    oncologist appointment

    the above are notes taken today to discuss possible treatments with our oncologist.

    he dismissed the treatments as not being the 'first' line treatments and said they wouldn't be suitable anyway. when questioned he admitted he'd no experience nor had he used any of these treatments. further more he refused to refer us to a neuro-oncologist. 

    So sorry Maca!!

    So sorry Maca, I know you are desperately looking for answers for your loved one and to be turned down by your Doctor is just heart rendering.  You should call the Director of the hospital or ask for a Social Worker and explain to them that the Doctor refused to refer you.  This Leukemia board is very weak and difficult to get answers.  But I just wanted you to know that I am really sorry and I wish you all the best.  Hope she is not in much pain.  

  • maca2004
    maca2004 Member Posts: 13
    #7
    nempark said:

    So sorry Maca!!

    So sorry Maca, I know you are desperately looking for answers for your loved one and to be turned down by your Doctor is just heart rendering.  You should call the Director of the hospital or ask for a Social Worker and explain to them that the Doctor refused to refer you.  This Leukemia board is very weak and difficult to get answers.  But I just wanted you to know that I am really sorry and I wish you all the best.  Hope she is not in much pain.  

    many thanks...

    ...today as i write we are having a second opinion with an oncologist who seems more proactive and knowledgeable in the use of alternative treatments. By alternative I mean anything over than, surgery, chemo and radiation.

    She is in some discomfort but think she plays it down alot.

    I'll add my notes for todays appointment to this thread on various treatments/drugs. Hopefully they maybe of some use bearing in mind alot are for the treatment of brain tumours but there is some overlap.

  • maca2004
    maca2004 Member Posts: 13
    #8
    treatment n drugs etc
    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

Discussion Boards