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Stage IV breast cancer and Leptomeningeal carcinoma

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24

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  • EV11
    EV11 Member Posts: 86
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    Mike- I have no words to express how sorry I am for you and your wife to have this news. It is devastating to know the end is near. Even though she may not respond, keep talking to your wife, let her hear your voice and feel your comforting touch as she leaves this world. May you find some small measure of comfort from helping ease her way.

    I am holding both of you in my heart.

    Elizabeth

  • mike3121
    mike3121 Member Posts: 280
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    Thanks for the kind words. After the WBR Kaiser has some chemo options to try.

    MikeW. Vancouver, WA

  • EV11
    EV11 Member Posts: 86
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    Mike-

    Does she have HER2+ disease? If so, and she is otherwise strong enough, and is seriously considering clinical trials, there is a CAR-T for patients with LM mets trial at the City of Hope Cancer Center in LA

    I am happy to hear that she is considering her options after WBR is completed.

  • mike3121
    mike3121 Member Posts: 280
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    No she's TNBC. A full markup was done and she has no mutation that are currently available.

  • mike3121
    mike3121 Member Posts: 280
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    Thanks, EV11 for your help. My wife has responded wonderfully on eribulin (Halaven) and even got 2 NED PET scans while on it. Eribulin quickly wiped out her too numerous to count bone mets. Then the bombshell, the cancer had gone to the dura in her brain, probably when she was given a 3 month break from chemo.

    Eribulin, though working for my wife, does not cross the Blood Brain Barrier (BBB); well actually it does somewhat from what I've read. The problem for my wife is to get the eribulin into her brain, across the BBB. OHSU has a whole department of study looking at that type problem.

    I just read this, "Eribulin may cross the Blood Brain Barrier after having Whole Brain Radiation (WBR)." My wife is now undergoing WBR! Maybe, just maybe the cancer devil can be put off for a bit.

  • EV11
    EV11 Member Posts: 86
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    Mike-- are they considering adding intrathecal topotecan to her IV Eribulin?

    And is she taking boswellia extract along with her WBR? 1500mg 2x/day has been shown to help reduce the cerebral/intracranial swelling from the WBR.

    I am glad to hear that she has responded well to eribulin systemically. WBR has been shown to assist a number of agents across the BBB. Sending wishes that it works well for her in this regard.

    Your wife is fortunate to have your support and advocacy.

    Elizabeth

  • mike3121
    mike3121 Member Posts: 280
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    NCIB says: "Eribulin does not cross the healthy blood–brain barrier (BBB), but could have the potential to do so after cranial radiation therapy." I've also found case studies confirming this.

    My wife did excellent with eribulin and even got 2 NED PET scans. She's just completed WBR and within 2 weeks will start on a eribulin cycle. Her MO is on vacation and won't be back until late July (good timing huh?).

    intrathecal topotecan Sounds like an excellent choice and I'll discuss it with her MO, or in his absence, his RN aid. Also OHSU, right her in town, has a whole department studying how to cross the BBB to get chemo into the brain. They've already developed several compounds that will temporarily disrupt the BBB. The FDA just approved pinpoint sonic microwaves to temporarily disrupt the BBB.

    I do thank you for this info. My wife is still on steroids so it's full on "Roid Rage." and she won't listen to me about anything. She scheduled to gradually come off it over the next few days.

  • EV11
    EV11 Member Posts: 86
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    Mike- I know OHSU well-- I live in Portland and get my care through the Providence Cancer Center, but have consulted with OHSU a few times regarding clinical trials. They are doing some very innovative research and I am grateful to live nearby. I really hope that they come up with some options.

    I am about to start an immunotherapy clinical trial at Providence...

    E

  • mike3121
    mike3121 Member Posts: 280
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    I wish you luck and prayers with your immunotherapy.


    1. When my wife first got cancer it was, well at least it isn't the traveling type.

    It was.

    2. Well she'll have AC and taxol to take care of it.

    No, she had a violent, almost fatal allergic reaction to the taxol.

    3. Well she will have a number of AL's and tamoxifen to deal with the cancer.

    No, they all failed within 12 months.

    4. Hey, Xeloda will take care of the cancer.

    No, it failed within 12 months.

    5. Well at least it's not the deadly triple negative type BC.

    Her ER/PR+ changed to TNBC.

    6. Well at least she'll qualify for targeted immuno therapy.

    No, tests could find none of her mutations that correspond with any trials.

    7. Well at least it hasn't gone to the brain.

    It recently went to the brain, the dura.

    8. Well at least eribulin has really worked out well for her.

    ?

  • Faith123
    Faith123 Member Posts: 26
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    Hi All,does having Mets your spine increase chances of LM?

  • Kthielen
    Kthielen Member Posts: 176
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    Hello! I’m new to this thread and was diagnosed with Leptomeningeal on June 26th. I did radiation to my spine x10 treatments. Got an Ommaya Reservoir implanted August 1st and had my second injection of Herceptin intrathecally today. I was originally diagnosed Triple positive.

    How are your treatments going?

  • mara51506
    mara51506 Member Posts: 6,263
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    Hi Kthelen, I too am sorry you find yourself in this situation. This thread is great for support. I would recommend to pull up the brain mets thread and read through it or do a search that includes leptomeningeal mets and or intrathecal Herceptin. I wish we did that here, it would be nice to take care of my brain without radation.

    I was diagnosed with a 10 cm tumour just over a year and a half after my initial dx of breast cancer. My MO figures that I was always stage 4 and that the cancer cells in my brain were just to tiny to find. I had whole brain radiation in 2016 as well as a craniotomy to remove the tumour. Then in 2018 around easter, a couple of new spots showed up where I had the original tumour. We radiated the whole tumour bed. MRI show there is still shrinkage going on and I get MRIs every 4 months now. I am NED from the neck down and take Herceptin and Perjeta.


  • Kthielen
    Kthielen Member Posts: 176
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    Thank you Mara51506! I will look up that thread. I actually haven’t had any brain Mets...my BC went to the pituitary gland...did cyberknife and so far no tumors in the brain, just thoracic spine. Hoping It Herceptin does the job!

    I also will continue Herceptin and Perjeta systemically every 3 weeks like I have been getting for the last 3 years.

    Thank you for your support:)

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi! I was diagnosed with triple neg recurrence and Leptomengeal on October 5th 2018. After interthecal methatrexate and radiation. Now been Xeloda since Feb. All was going well and felt good until August 10, when I started being wobbly when I walk, nausea and fatigue. Drs didn’t think was related and said I had sinus inflammation. Still have it and go for 3 CT’s and 2 MRIs tomorrow and the next day. So scared it’s the lepto. Dr said if progressing, have to get radiation again. I just got my hair back. That’s not a problem, but still disturbiing. Any pep talks out there? I would really appreciate it and any other feedback. Thank you, ilene
  • mike3121
    mike3121 Member Posts: 280
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    My wife is TNBC (her ER/PR+ turned TNBC). A month and half ago she had 4 violent seizures then brain surgery to remove the cancerous part of the brain lining, the dura. This was replaced with a titanium wire mesh. Next she had 11 days of Whole Brain Radiation (WBR). She's back on chemo, Halaven, which seems to work well on her extensive bone mets. My wife is extremely tired and sleeps all day. Her mental skills and memory are that of an 8 year old.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    mike, I am so sorry for what you and your wife are experiencing. It is a brutal disease. I send a hug to you, your wife, and your family.

  • Kthielen
    Kthielen Member Posts: 176
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    Ilene-Sending positive vibes your way. Keep us posted on the scans. I have had 2 intrathecal Herceptin injections and so far the main side effect is fatigue.

    I will have an MRI in October to see how the radiation and intrathecal is working.


    Mike- I am so sorry to hear this, will keep you in my thoughts as well.


    Best,

    Kathy

  • mike3121
    mike3121 Member Posts: 280
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    TV personality Valery Harper just died at age 80. The article said she had a number of medical issues. She was the most well known personality with LM.

  • olma61
    olma61 Member Posts: 1,026
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    oh gosh mike I did not know she went metastatic and had LM. Looks like she did quite well for awhile though.

    There’s a 2013 video on the bottom of this page where she is “ already past her expiration date” in her words and she looks great. She talks in detail about all her treatment including her earlier lung surgery.

    Celebrities are paying tribute to beloved sitcom actor Valerie Harper, who has died at the age of 80. https://www.huffpost.com/entry/valerie-harper-tribute-celebrities_n_5d6a1762e4b01108044f667a?ncid=engmodushpmg00000004 via @


    RIP Dear lady.


  • Ihopeg
    Ihopeg Member Posts: 92
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    Good morning
    Mike, I’m so sorry to hear about your wife.

    I got my scan and mri results yest and CT’s are stable! The brain mri shows a new spot in the left pons. The other LM enhancement has improved. In the spine it said markedly improved since pre radiation. Dr didn’t seem that concerned about new spot. I go on the 10th and will find out more. Thanks ilene
  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
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    I hopeg, I've seen you on some other threads. Sorry to find you here, but happy to have one one to talk to. I was just diagnosed with LM. Scared the crap outta me. intrathecal chemo starts next week. I've already had kyphoplasty to thoracic spine and radiation to left hip and pelvis. I'm still not walking.

    Hi Mike and Kathy and Olma. You are still here well after diagnosis. That is certainly something for me to hold on to.

    So, I just lye in bed through the holiday weekend, and then hope for the best.

    A Beautiful Sunset

  • Ihopeg
    Ihopeg Member Posts: 92
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    A beautiful Sunset,
    Nice to meet you. Sorry for your circumstances too. I had intrathecal chemo which was Methotrexate. Felt horrible. Then had radiation and felt much better. I’m on Xeloda now. Hope the best for you too! You can pm me if you want to talk more or just post on here. Take care, Ilene
    Ps where in Philly?
  • Bonnysgirl
    Bonnysgirl Member Posts: 10
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    hi Ilene,

    Could you tell me how you were diagnosed with lepto? And what your treatment plan was after that(i.e. what kind of radiation to what sites/chemo etc)? I go with mom tomorrow to meet with the radiation oncologist to get results of spine and brain MRI.

    Thanks so much!

    Chloe

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi Bonnygirl,
    I thought I had sciatica and my dr sent me for an X-ray of my spine. Also I had floaters in my eyes that just showed up. Showed sclerotic legions. Wetnt to onc and she sent me for MRIs I’d brain and spine..She called me at work and said go to er. You have leptomeningeal carcinoma. Went into hospital and they did lumbar puncture and that proved it. Then they put in an omaya catheter in my brain to give me interthecal methatrexate. Was really not able to function on that. Didn’t like onc. So I went to university of PA . They took me off methatrexate and had my do 25 proton radiation on spine and brain. Felt much better. After that I’ve Been on Xeloda one week on and one week off since Feb. I can basically do anything and feel ok. Good luck to your mom and let me know what happens at her appt. Ilene
  • Kthielen
    Kthielen Member Posts: 176
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    chloe- I got numbness on the right side of my abdomen, called my onc and he ordered an MRI of spine. I also had upper left back pain. The MRI showed it.

    I have had 10 radiation treatments to my thoracic spine. On August 1st I had an Ommaya Reservoir put in and have had 2 Intrathecal injections with Herceptin(I am Her2+)

    I will repeat the MRI of my spine in October to see how things are working.

    Good luck with your mom, will be sending positive vibes!!

    Best,

    Kathy

  • Ihopeg
    Ihopeg Member Posts: 92
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    I have some good news! My Dr showed my MRIs to radiologist ar Penn and the MRI says that the Leptomeningeal was nearly resolved!! She said she didn’t see that happen before! Miracles do happen! Also my spinal lesions are decreased!
    Ilene
  • Kthielen
    Kthielen Member Posts: 176
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    Ilene- That’s great news!!! What therapy/treatment did you receive? I’m so happy for you:-)


    Kathy

  • mike3121
    mike3121 Member Posts: 280
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    Ihopeg, great news. As you are TNBC like my wife, what chemo are you on? My wife is on eribulin and has worked for her in the past.

    After 4 violent seizures, brain surgery to remove the cancerous part of her dura then 11 days of WBR she's a mental and physical mess. She has very little short term memory and acts, in many ways, like a small child. Also, she's totally exhausted. She seems to be locked into doing obsessive compulsive things such as going to the bathroom every 5 minutes or suddenly wandering around the house pushing her walker muttering to herself looking for something. From what I've read they say this will all pass, It's been a while and I see no improvement. I'm worn out and very disheartened.

  • Ihopeg
    Ihopeg Member Posts: 92
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    Good morning,
    I was on methatrexate for about 2 months twice a week. Felt horrible. Changed drs and they had me do Proton radiation for 26 days. After that I’ve been in Xeloda since February. I started feeling better during radiation and have been since then. Mike, I hope your wife feels better! Kathy, thanks for the congrats!! Ilene
  • mike3121
    mike3121 Member Posts: 280
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    My wife is taking D-ribose 3 times a day and Creatine for muscle build up. It's been several weeks now and not a bit of change. She's lost 20% of body weight. Her oncologist has stopped all chemo as she's too frail to continue. She's due for a PET scan next Friday maybe that will show what's going on. Also scheduled at some later date is and brain scan MRI. The fear is she's too frail to even get a PET scan. In that case they'd probably just recommend hospice. It hurts, hurts bad to just see her go down hill and theirs nothing I can do to stop it.

    She does eat, perhaps even gained a bit of weight.

    MikeW.