TNBC Leptomeningeal metastases - looking for ways of treatment

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LetsSaveHer
LetsSaveHer Member Posts: 2
edited November 2020 in Triple-Negative Breast Cancer

Hello,

I'm writing to you full of hope. My mother is a 48 year old cancer patient with TNBC diagnosis. Current state is very critical and only palliative treatment (considered by me not as treatment) is applied.

In October triple-negative breast cancer was diagnosed. Breast tumor was expanded and diagnosed in biopsy as Carcinoma ductale invasivum mammae and right lymph node was also attacked and diagnosed in biopsy as Cellulae carcinomatosea. Additionally, pathomorphological examination of breast tumor showed:

I – negative immunohistochemical reaction to estrogen receptor (ujemny odczyn immunohistochemiczny na receptor estrogenowy)

II – negative immunohistochemical reaction to progesterone receptor

III – HER2 receptor overexpression is not found. Immunohistochemical reaction to HER2 1+ receptor (nie stwierdza się nadekspresji receptora HER2. Odczyn immunohistochemiczny na receptor HER2 1+)

IV – Ki67 proliferation index (MIB1) approx. 90% (Indeks proliferacyjny Ki67 (MIB1) ok.90%)

Additional MRI examination shows:

  • Minor changes in the liver (for verification)
  • Minor meta changes in the bones (confirmed)

After one week, chemotherapy treatment was applied.

So called red chemotherapy (6 prescribed, every three weeks and all performed):

  • 1.Ondansetron 1 x 8 mg
  • 2.250 ml 0.9% NaCl
  • 3.Demezon (Dexamethasoni natrii phosphas) 16 mg
  • 4.Aprepitant 125 mg
  • 5.ADM 124 mg (10 mins infusion)
  • 6.250 ml 0.9% NaCl
  • 7.CTX 1240 mg (30 mins infusion)
  • 8.250 ml 0.9% NaCl
  • 9.Neulasta (pegfilgrastym) 6 mg (made 24 h after chemotherapy)

So called white chemotherapy (12 prescribed, every one week and 8 performed):

  • 1.Ondansetron 1 x 8 mg
  • 2.250 ml 0.9% NaCl
  • 3.Demezon (Dexamethasoni natrii phosphas) 16 mg
  • 4.Clemastin (clemastinum) 1 ampoule
  • 5.Femogast (Famotidine) 1 pill
  • 6.Paclitaxel (Paclitaxel) 160 mg (60 mins infusion)
  • 7.250 ml 0.9% NaCl

After every third chemotherapy:

  • 1.Zoledronic acid 4 mg
  • 2.250 ml 0.9% NaCl

During treatment, blood analysis was performed before each chemotherapy and results were defined as stable, without disturbing signs. Moreover, my mother felt very good after chemotherapy, of course her hair fell out (very fast) but general health was defined as good and stable.

In February MRI was performed and after medical analysis, doctors found no tumors in the previous areas and no metastasis sources in previous areas.

In April the patient complained about headaches, in the beginning of May headache was intolerable and vomiting occurred, MRI with contrast was performed. Results of scan:

Referral for examination: tumor in the right lobe in CT, breast cancer in medical history

In right frontal region, high on the vault (central frontal gyrus) clinically known focal lesion (dimensions: 10 x 11 x 12 mm) with enhanced characteristics due to the administration of contrast and local thickening of meninges.

Lesion with similar morphology of signal with the size of 8 x 5 mm, visible on the right, central gyrus, also with local thickening of meninges. Additional, minor lesions are visible in areas:

  • Semi-oval center on the right side 3 mm
  • Upper parietal higher lobe on the right side 4 mm
  • Gyrus angularis in the right side 4 mm
  • Lower temporal gyrus on the right side 4 mm with local thickening of meninges
  • Occipital gyrus on the left side 3 mm
  • Base of left temporal lobe 3 mm
  • Base of right cerebellar hemisphere 4 mm
  • Vermis cerebelli 4 mm
  • Left cerebellar hemisphere two lesions: 4 mm and 2 mm

MRI image indicates Leptomeningeal metastases.

The ventricular system is symmetrical, not dilated and not displaced.

Paranasal sinuses healthy.

After one week of hospital stay in neurological ward, patient was transported to different hospital where radiotherapy was to be done. The state of the patient was considered critical, vital functions began to decline, but after a day cerebral oedema decreased and patient woke up. When blood tests showed that patient is stable, radiotherapy was applied. After two sessions, critical state returned and doctors ruled that radiotherapy cannot be performed on patient as a result of increasing cerebral oedema and decreasing of electrolytes (mostly sodium and potassium).

Now, the patient is in another hospital in neurological ward and cerebral oedema treatment and only palliative treatment is implemented. Current state of the patient:

  • Lack of vision
  • One ear hearing disorder
  • The patient lies down but moves normally (lack of strength)
  • Contact is normal and patient gives logical answers to questions
  • The patient sleeps a lot
  • No any abnormalities in food intake, additionally high protein drinks were applied
  • Daily diuresis is higher than fluid intake

Doctors say that there are not any other methods of treatment than radiotherapy and now, in current situation, only palliative treatment (considered by me not as a treatment) is applied.

Currently applied treatment:

  • Headache and neck treatment
  • Reducing cerebral oedema
  • Electrolyte replenishment

Do you have any other ways of treatment? Any other innovative methods? I just can't sit and wait for my mother's death and that's why I'm writing to you. Please, let me know if you have any additional questions. Hopefully waiting for a reply!

Comments

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2020

    What a sad and difficult situation. It sounds like you barely had time to get used to the diagnosis when it got much worse. I am not any expert, just an informed patient, but I know TNBC that is progressing so rapidly in stage 4 is very difficult (or impossible) to stop.

    I am sure you want to do anything possible to save your Mom. It's heartbreaking, but there may not be any good options to help her more than keeping her comfortable. You must be young since your Mom is young. I am so sorry for both of you going through this. I send you a hug.

  • LetsSaveHer
    LetsSaveHer Member Posts: 2
    edited June 2020

    Thank you, santabarbarian, for your kind words. Bless you!

  • Momchichi
    Momchichi Member Posts: 133
    edited June 2020

    Letssaveher,

    Your mom's situation is so difficult and heartbreaking to hear. I cannot offer you any medical information to help but I am a member of a Facebook group for stage 4 triple negative patients and their support person (you!). It is really supportive and has members from all around the world so someone is likely having a similar experience. Here is the link:

    https://www.facebook.com/groups/1614937148804437/?ref=share

    If the link doesn't work, search for the private group Triple Negative BC Stage 4.

    Sending you my love & hope!



  • starlove
    starlove Member Posts: 18
    edited November 2020

    Hello Lets save her,


    I am on Capecitabine, Tukysa and Kadjinti. I had leptomeningeal disease, but it has gone away in three months. I am using CBD oil every morning and MSM supplements every day. My doctor referred me to palliative care and hospice and have told me I had 2 months to live. That was 6 months ago. I belive the supplements help me get rid of cancer. You could read my experience with the treatments. I hope that you mom will get help as soon as she can. Believe in supplemental treatment. It really works. It did for me. I pray for your moms well being and good health. I pray that God will help her very soon. Miracles happen every day.


    Love and Peace

    Star

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