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Stage IV breast cancer and Leptomeningeal carcinoma

13

Comments

  • Kthielen
    Kthielen Member Posts: 176

    Mike, I am so sorry you are going through this. It isn’t fair and seems no one should have to deal with this terrible disease. Will continue to pray for you. Thanks for the update!

    I have had 5 Herceptin IT treatments and doing pretty good. Will have one more then get a thoracic spine and brain MRI on October 2nd....hoping I have good results!

    Take care,

    Kathy

  • Ihopeg
    Ihopeg Member Posts: 92

    Dear Mike3121,

    I am so sorry to hear about your wife. I’m glad she is eating. When I took methatrexate they thought I was ready for hospice too. But I pulled through after changing meds and getting radiation Prayers to you and your family

  • mike3121
    mike3121 Member Posts: 280

    Ihopeg: Thanks for that comment, I guess others like yourself have pulled through. Gives me hope.

  • Kthielen
    Kthielen Member Posts: 176

    Hi! I wanted to share my good news with you all.

    I had my MRI on Sunday and the Mets in my spine are almost completely gone, the largest tumor at T5 is gone and there are no brain Mets. This is just after 6 intrathecal herceptin injections through my Ommaya Reservoir.

    I’m going to have 6 more IT Herceptin injections, repeat the MRI and go from there.

    Hope you are all doing well.


    Best,

    Kathy


  • Ihopeg
    Ihopeg Member Posts: 92
    That is great news! Congrats!!!!
  • Heya24
    Heya24 Member Posts: 4

    It makes me so happy to hear good news from you and Kthielen, that's amazing! Congratulations!

    My cancer spread to the cerebrospinal fluid too (I can never seem to remember the word leptomeningeal, haha), but instead of solid tumours there's a bunch of floating nodules pressing on my nerves (if my memory serves me right) and it's left me bedridden. I'm getting methotrexate through an Ommaya Reservoir (starting the third injection today), hopefully it'll improve things or at least stop it from getting worse. Just gotta be patient for now.

    Here's to hoping for more good news for everyone in this thread. Wishing us all the best of luck!

  • Kthielen
    Kthielen Member Posts: 176

    Good luck to you Heya24!! How are you tolerating Methotrexate? I have heard it’s pretty rough.


    Best,

    Kathy

  • Heya24
    Heya24 Member Posts: 4

    Thank you! I'm pretty lucky with chemotherapies, the side-effects tend to be forgettably mild and so far this one seems no different :D Fingers crossed it stays that way! That said, how are you? Are you still on the Herceptin?

  • Kthielen
    Kthielen Member Posts: 176

    good to hear! I am still on Herceptin systemically and intrathecally! My side effects are mild as well, which I’m so grateful for!!!

    When will they do an MRI to see how things are working for you?


    Best

    Kathy

  • Heya24
    Heya24 Member Posts: 4

    Cheers for mild side effects! ThumbsUp

    Waiting a while before a new MRI scan, but I'm not sure how long yet though. I'm hoping for some improvement, I need good news!

  • Ihopeg
    Ihopeg Member Posts: 92

    Hi everyone,
    I have a 29 year old daughter. I live alone and am functioning and going places on my own. The problem is that my daughter has anxiety and worry when she tries to text me and I don’t answer. I am extremely forgetful and can’t always find my phone. She freaks out and calls my entire family to see where I am. How do I get her to relax and not worried that I am laying on the floor? She tracks me on her phone. I’m glad she cares but it is getting too much. Any advice will be greatly appreciated. ilene
  • Daniel86
    Daniel86 Member Posts: 207

    Ilene, it's not related to your daughter per se, just wanted to let you know it's always great to see you post!!

  • Ihopeg
    Ihopeg Member Posts: 92
    Thanks Dan!
  • Kthielen
    Kthielen Member Posts: 176

    Gosh Ilene I’m not sure...my kids are younger. My advice would be to maybe sit with her and have a talk about how it’s making you feel.

    Hope your doing well


    Kathy

  • Ihopeg
    Ihopeg Member Posts: 92
    Hi Kathy,
    Just read your good news! Congrats. Good idea to have a talk with my daughter. It’s really stressing me out. Thanks Ilene
  • moominmamma
    moominmamma Member Posts: 35

    I dont know how far you live from your daughter, but in my case I started weekly zoom meetings with my adult kids so they could see me and see I am doing ok. I also spent a couple months living in same city where my daughter lives so she could drop in/see me very often to relieve her fears. I feel so sorry for our kids; giving them strategies you control to check in and see you can help ease their fear.

  • Ihopeg
    Ihopeg Member Posts: 92
    Hi Moominmama,
    My daughter and son live within 20 minutes from here. My daughter stops by a few times a week after work and hangs with me on Saturday afternoons. I speak to them a few times during the day also. I guess from my diagnosis my daughter feels like something could happen any moment and she is scared. Thanks for your advice. ilene
  • Heya24
    Heya24 Member Posts: 4

    Hello Ihopeg, glad you seem to be doing so well!

    About your daughter, I'd be the exact same way she is in your situation, totally agree with having a chat with her about it. I'm 28 myself and my mom is kinda similar and now especially wants to 'baby' me a bit. You really do just have to sit down and talk about it. Also, I recommend doing things to help you remember to keep your phone close and on, like write it on your arm or hand, maybe keep it on a sort of necklace or a small rope tied from a pocket, etc. Every once in a while maybe just send a smiley face or hello-text, things to put her at ease and give you some quiet yourself, if that makes sense?

  • HopesFiercely
    HopesFiercely Member Posts: 8

    Hi, Ihopeg. I can understand your daughter's worry when she can't contact you. I felt anxious when I couldn't contact my 85 year old mom who lived alone AND I understand how you feel. I suggest you and your daughter set up a mutually agreeable time or times of the day to text and set the alarm on your cell phone and/or an alarm clock in your home to remind you that it's time to text her or answer her call. You could just sent a smiley face or hello as Heya24 suggests. Quick, easy and it would reassure your daughter that you are ok. I and my husband set up cell alarm/ alarm clock to remind me to take my medications on time. While I don't like to admit I need these reminders, they do keep me on track.

    LovingKindness to you and your daughter.

  • Ihopeg
    Ihopeg Member Posts: 92
    Heya24 and HopeFiercely,
    Thank you so much for your advice. I have been putting my phone in the same place when I put it down and don’t use silent anymore. I have been keeping contact with my daughter and making sure to answer her quickly. Hopefully I can keep this up! So how are you both doing? Let me know. Ilene
  • Kthielen
    Kthielen Member Posts: 176

    Hi! Just checking in to see how you are all doing.

    I am still receiving IT Herceptin every week. Just finished 10days of radiation to my T12-L2 spine...will repeat a MRI in 3 months...

    Hope all is well!

    Best,

    Kathy

  • Ihopeg
    Ihopeg Member Posts: 92
    Hi, (this is long.Im sorry)
    How is everyone doing? I was doing fine on Xeloda until about 3 weeks ago. For about 3 months I’ve been dealing with constant constipation and diarrhea. After Dr telling me to use all kinds of laxatives and trying many things, on Christmas night I had horrible stomach pain and constant vomiting. Told to go to ER. As it turns out I had an obstruction that was blocking my duodenum and biliary glands. After 4 days with a Nasogastric tube from my nose to my stomach (torture) . They did three endoscopes under general anesthesia and put stents in my stomach. I was in the hospital for 9 days. Feeling better but scared to death it will happen again. The GI doctor said it was a mass but biopsy couldn’t tell exactly what is was but inflammation. Now I am waiting for my onc and radiologists at Penn to hopefully figure it out. My onc said since I have a bad diagnosis she thinks it must be cancer. I want proof. She should call tomorrow with results. I’ve been off Xeloda since Dec 26. I’m so scared. Has anyone had these GI issues? Thank you in advance and so sorry too long, was a nightmare. Take care everyone, Ilene
  • Kthielen
    Kthielen Member Posts: 176

    I have not had these symptoms nor have been on Xeloda. So sorry this is happening:(

    Keep us posted on the results. Hope and pray it’s good news.


    Best

    Kathy

  • AllyBee
    AllyBee Member Posts: 99

    ihopeg, xeloda used to give me GI issues but nothing as bad as you've described. I'm sorry you're going through this, I hope they can figure it out for you. I did end up hospitalised once while on Xeloda, I had no stop diarrhoea for something like 5 days, every 10 minutes. It was hell, but it wasn't that bad every cycle.

  • Ihopeg
    Ihopeg Member Posts: 92
    Hi, I finally heard from two different hospitals that I most likely have breast cancer on bowel by the lobular cancer I had 13 years ago. I have to get a pet scan and another endoscopy to have proof. If it is, they said big surgery to resect bowels and chemo once a week. So upset. So worried that the lepto will kick in and that will be it. Help!!
    Ilene
  • Kthielen
    Kthielen Member Posts: 176

    Ilene,

    Thinking of you and praying for you♥️ Cancer sucks!!!

  • Ihopeg
    Ihopeg Member Posts: 92
    Hi here’s an update. Got home from hospital on Jan5 . Been not eating much and was ok for a while. Seems like when I started back to some foods, would get nauseaus . Fastforward to last three days vomiting and constipated. Did a upper GI and said that the stent I had put in 3 weeks ago is not letting anything go thru it. Also I got a pet scan that still doesn’t say what the original obstruction was. Onc thinks it cancer. I want proof! So tomorrow I have to get stent replaced using ensdoscopy. Please wish me luck then on to the next thing Ilene
  • Kthielen
    Kthielen Member Posts: 176

    Ilene...hope the procedure went well and you are feeling better :)


    kathy


  • snow-drop
    snow-drop Member Posts: 563

    Hi, Jackie many thanks for introducing me to this, I am glad to find some people share same experience.

    I diagnosed with breast cancer, September 19, HR+, HER2-, the more test showed it has already metastasized in lymph and bone. Because huge delay in starting treatment, I experienced spine fractured on top of cancer. It took me 6 weeks bed rest and cost me a lot of pain and a lot discomfort such as bladder dysfunction, numbness etc. got 10 sessions of radiation therapy and zometa every month since November. with the help of PT I could get back to basics, I just started going for a walk (with not totally leg numbness feel and fear of breaking bone again). So my oncologist ran another mri, it shows leptomeningeal disease. CSF is also affected by cancer. As much as I appreciate your experience, I do have some questions:

    1) Is it possible HR changed from positive to negative (or maybe pathology results were incorrect?) I have been on hormonal therapy: letrozole and zoladex for 7 months, and targeted therapy: ibrance for almost 6 months but recent mri also shows cancer spread to almost all thoracic spine and cs fluid.

    2) is it possible HER2 also change from negative to positive?

    3) a neuro oncologist suggested lumbar puncture to detect cancer in spinal fluid. Does anybody have any experience?

    4) do you know any treatment or medication for this?

    Thank you

  • bestbird
    bestbird Member Posts: 232

    Julia, I am sorry to hear you are dealing with Leptomeningeal Metastases (LM).

    In answer to your question, it is indeed possible for the pathology of MBC to change, for example from hormone receptor positive to negative, or from HER2 positive to HER2 negative (or vice versa). This is because cancer can evolve over time, and also due to the influence of treatments upon the nature of the tumor.

    In my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, is an extensive chapter about LM including diagnosis and treatment options. Below is an excerpt. For more information, please visit: https://www.insidersguidembc.com/about

    LM is difficult to treat because many drugs are not able to penetrate from the bloodstream through the meninges into the cerebrospinal fluid. Often brain metastasis and LM occur at the same time.For that reason, women diagnosed with LM should also have an MRI of the brain.From: https://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

    LM can be difficult to diagnose. The most common method is by withdrawing spinal fluid with a needle and examining it for breast cancer cells.This procedure is called a spinal tap or lumbar puncture.If the first lumbar puncture comes out negative, it must be repeated two more times to assure a 90% chance of an accurate diagnosis.Doing one puncture only assures 45% accuracy.It is important that the lumbar puncture be close to the site of the suspected area of leptomeningeal metastasis.An MRI with gadolinium (a contrast agent) of the entire brain and spine can also be used to diagnosis LM and may be better than a CT scan.An MRI with a radioactive tracer can also be used to locate obstructions in the spinal fluid or blood flow caused by LM.However, on an MRI, inflammatory disease or local infection can sometimes be mistaken for LM.From: https://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

    Once LM is diagnosed, it is important to check:

    The patient's ER, PR and HER2 status, as this will help to determine potential therapies.

    Whether the disease is bulky or diffuse:

    - Bulky Disease: Radiation therapy is only given to relieve symptoms in areas of bulky disease because chemotherapeutic agents do not appear to penetrate tumors or nodules (smaller tumors) in the meninges.

    - Diffuse Disease: Chemotherapy is given for diffuse disease and may extend life for several months, or sometimes for a longer time.

    Whether IntraCranial Pressure (ICP) is elevated.If intracranial pressure is elevated, radiation may be a way to relieve CerebroSpinal Fluid (CSF) obstruction if needed.Relief of CSF outflow obstruction has been shown to improve functional status and is likely to prolong survival in these cases.A VentriculoPeritoneal Shunt (VPS) placement procedure can be used, which carries a small risk of hemorrhage, infection, or shunt malfunction.However, placement of a VPS is a definitive treatment for elevated ICP and may be combined with a reversible on/off valve to facilitate administration of IntraThecal (IT) chemotherapy.For those in whom a surgical procedure is not desired or tolerable, palliative Radiation Therapy is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable.From[124, PMID:23593536]: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

    The information below focuses on medications to treat LM.In addition to drugs, palliative radiotherapy can be used with Intrathecal or intravenous chemotherapy.

    Unfortunately, there currently is no agreed-upon standard treatment LM.Sometimes the benefits of treatment are offset by treatment side effects.Especially if there is uncontrollable disease in other organs, treating symptoms of the disease but not the disease itself may be the best option.

    Drug Delivery options for leptomeningeal metastasis

    Depending on the therapy, drug delivery may be provided as follows:

    IntraThecally (IT) directly into the cerebrospinal fluid, usually via an Ommaya reservoir

    Orally

    Through an IV port



    LM drug options are varied and may include the following drugs.Typically, Cytarabine, Herceptin, Methotrexate and Thiotepa are the most commonly used.

    ANG1005 (Not Yet FDA- Approved for MBC Patients)

    CranioSpinal Irradiation (CSI)

    Cytarabine (DepoCyt)

    Entrectinib for NTRK fusion-positive solid tumors

    Gemzar (Gemcitabine)

    Herceptin, with or without Tykerb

    Hormonal Therapies

    Leucovorin

    Methotrexate

    Thiotepa (Thioplex) (FDA-Approved for MBC Patients)

    Whole Brain Radiation (WBR)

    Xeloda (Capecitabine)

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