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Stage IV breast cancer and Leptomeningeal carcinoma

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Ihopeg
Ihopeg Member Posts: 92
Hi. I have a question. I was diagnosed in October with Leptomeningeal and stage 4 bc to my spine and pelvis. Had methotrexate and then switched Drs and had proton radiation. Went to dr yesterday I and she said I should either do Xoleda or try for a clinical trial. My question is Why do these treatments and feel worse when there is nothing to do about the Leptomeningeal? I feel pretty good now. Can actually go out for periods of time. Thank you for any suggestions and comments. I really appreciate it. I am so confused and scared
Thanks ,
Ilene
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Comments

  • SchnauzerMom
    SchnauzerMom Member Posts: 75
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    Hi Ilene,

    So sorry you are dealing with this, but glad that you are feeling pretty well. Certainly I have no answer--in fact, I just now had to read up on leptomeningeal disease. All I can speak to is the Xeloda. For me it was a very tolerable medicine (hands and feet peeled, but manageable). Is your doctor thinking that treatment will continue to keep symptoms at bay for longer? Is it something you might try, and if it makes you feel worse, you wouldn't have to continue? This disease is scary, and I see that you've been dealing with it for a long time (and also that you are ILC, me, too).

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi thanks for your post! I agree with you that I think I should start the chemo pills and see how I feel. I want to go on a quick vacation with my 2 grown kids first. I think the dr is trying to treat the triple neg stage 4 to my bones. Right now I have no symptoms of the BC. I see you have really been thru so much and I thank you for your reply. Thank you,
    Ilene
  • EV11
    EV11 Member Posts: 86
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    Ihopeg-

    Not only will Xeloda help treat the TN bone mets (although it make take a while to see results in the bone--) it also crosses the blood/brain barrier and can help keep the LM mets under control.

    Also, do you have a BRCA1 or 2 mutation? Or a PALB mutation? If so, adding a PARP inhibitor could help greatly....if you haven't done testing for BRCA/PALB or other mutations, I would suggest that you consider it. Lobular BC that metastasizes to the LM space frequently is BRCA mutant....and also sometimes HER2 MUTANT--not amplified...it takes gene sequencing to see that (it's not the copy-number amplifications that histologic HRE2 testing checks...) You can be HER2 mutant and HER2 negative--and while only happening in about 10% of all MBC, it can occur in around 30% lobular MBC--so HER2/HER3 mutations are good to look for...they can be treated with anti-HER medications even if histologically you are HER2 unamplified (negative.)

    I had a very dear friend with BRCA2 pleomorphic lobular disease who developed LM and brain mets as her first and only metastases...she had good results from IT methotrexate after a few doses and then great results when she added a PARP inhibitor. Unfortunately she died last spring (about a year after her LM diagnosis) from complications of a rare paraneoplastic syndrome (Limbic encephalitis)...it had nothing to do with her treatment, nor was directly related to her cancer activity, according to her neuro-oncologist and seconded by a consultant who specializes in paraneoplastic disease at Mayo...it was just one more thing in a string of bad lucks for her.


    I hope that you have a great oncologist to guide your care, and can consider a referral to a neuro-oncologist. I definitely suggest being open to using Xeloda for a few rounds..And note that the 7 days on/7 days off schedule at 3000mg-- or even 200mg--per day greatly reduces side effects and has very similar outcomes to the more traditional 14/7 regimen...it's just far better tolerated!


    I hope that you find a manageable regimen...I have another friend who has been dealing with LM mets for almost 4 years (she is HER2 positive, so has other treatment options than you at this point). She still is able to be very involved in her elementary school-aged son's life and says for the most part her treatments are manageable. I wish the same--and for a very long time--for you.

    Elizabeth

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi Elizabeth,
    Thank you for your reply. I was tested 12 years ago for the BRCA 1 and 2 and was negative. Also I was HER2 negative. Originally I was ER/PR positive . Now I am triple negative. I did the methotrexate for about 5 weeks then switched drs who did proton radiation. I really feel better since then and have no more numbness in my pelvic area. I’m just afraid it will come back. I have a bone scan and CT scan in the coming weeks to see if I can take the xeloda or a clinical trial of ketruda. I wish I could have gotten the tests earlier. I have been done the proton since Dec 26. What side effects do you have from the Xeloda?
    Thank you for giving me hope by feeling me about your friend that is 4 years out! It gives me hope. This is just so horrible and my family is devastated as well as me. Thank you so much,
    Ilene
  • Parrynd1
    Parrynd1 Member Posts: 343
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    Ihopeg I am also TN with menigeal mets (plus other mets), and I’ve found that most of the treatments I’ve been on have been pretty tolerable. Only bad one was AC back when I was stage 3. I continue to keep trying to find a treatment that works, on #6 now, despite how it might make me feel because I hope to have more time with my loved ones (maybe give them more time to come to terms) and hold on to the impossible hope of being NEAD. I personally couldn’t face my family knowing I didn’t do all I could and that is what feels right for me. If a treatment is making your QOL plummet then you can stop if that’s what your focus is. You may even be able to take breaks if the treatment seems to be working and you don’t want to trash it all together.
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi, thanks for your reply. I have been hoping to find someone else who is going thru the same thing to be able to vent and talk about this. I can’t really speak to my family because it’s upsets them so much. I have two grown kids who I can’t leave so soon.. I am so sorry that you are going thru this too. How are you feeling? What treatment are you on now? You are right about doing everything I can. I will take the xeloda if the dr prescribes it to me next week. I see you are triple negative too. Again thank you for replying and I hope we can talk soon.
    Ilene
  • Parrynd1
    Parrynd1 Member Posts: 343
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    It’s hard to find someone going through a similar situation and it feels very lonesome. Even though there is a whole community who gets most of it it’s nice to meet ppl who get more of it. I couldn’t talk about things with my family at first either, but it’s been almost a year since the brain mets we’re found and they are a little better or better at hiding it. Not sure I like to think they are pretending to take it ok, but there’s only so much I can do for them. Right now I feel pretty ok aside from a terrible cold. My menigeal met is near the vision part of the brain. At first I had a solid tumor in the lining and had a craniotomy with a round of radiation after. Later a cloudy area appeared and we were hoping it was swelling (my immune system reacting to Immunotherapy) so i was put on Avastin. It did help me regain some more of my vision. When that line of treatment failed I was taken off Avastin in the hopes the suspicious area would resolve and it hasn’t. I have about 35% of my vision mostly on the right side and sometimes see a color wheel of sorts. Hoping to go back to Avastin as it did help a bit. Cancer can cause swelling so that’s why we think it helped, but didn’t resolve it plus now that treatment is done...only way to know 100% is to biopsy. A spinal tap can come back negative and can take up to 3 separate attempts so I opted not to do it as it doesn’t change much for my treatment with cancer in several other areas. I’m on Halaven right now and have scans Monday to see if it’s working...I’m thinking Xeloda is next for me too. I don’t think I will ever feel ready to leave the people I love. There will always be a milestone I’ll want to be there for and me being young it makes it worse, but I’ve started to come to terms that I’m winding down my life and at least have more advanced notice than many others. I hope the Xeloda treats you well :) how did you find your LM? I know a few people who are doing well with brain mets, but not so many ppl get LM or menigeal mets so finding those are few as it is. Let alone TN which is a while other beast in my opinion.
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi,
    I had numbness and tingling in my feet and also thought I had sciatica and floaters in my eye. Went to foot dr and he said get better shoes. Went to Wills Eye Hospital in Philly for my eye and said was normal for aging. That was in August. I decided to go to my primary dr and he sent me for xrays of my legs and hips/pelvis for the sciatica. X-ray came back sclerotic legions in pelvic area. Had MRI and showed the LM spinal fluid and extensive Mets in spine and pelvis. I was at work and onc said go right to hospital. Was a nightmare and I feel like I haven’t woken up yet. Was is hospital 5 days and they started methotrexate after inserting an Ommaya reservoir in my brain. Told me I had a few months. Had proton radiation 25 days ended 12/26. How did they find yours? Ilene
  • Parrynd1
    Parrynd1 Member Posts: 343
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    That sounds very scary I’m sorry you’ve had such a thrown into the fire introduction to this. My MO told me I have 4 months to 3 years. People who respond well to treatment get a better prognosis, but I’ve never responded much even when stage 3. However! I am more than 4 months out and feel ok so there’s that :) Not saying ignore your MO...they know your situation better than I do. One day I had a terrible migraine that made me sick and lessened each day. 2 weeks almost exactly I had my first follow-up my my RO and mentioned it so she sent me in for an MRI. The pain wasn’t so minimal I thought I could be imagining it and called to cancel that MRI, but suddenly thought better safe than sorry. Thank goodness! I don’t have the port in my head yet as my mets are just meningeal (MO says it is a bit different from LM although I’m not sure how...it made sense when she explained it and I’m sure I understood at the time). Much of what I’ve heard is the data from statistics they tell you is old and we are a minority so collecting data on us means less up to date info. Truth is no amount of time is guaranteed, but it’s scary as heck to see your ticking clock. Why did they put in the port if they plan to give you oral chemo? I would think they would want to focus on the biggest fire, the LM, by using the port and chemo that way. How are you holding up now? Did the rads help at all? I don’t know if you ever wake up, but it’s your dream. You can’t chose the nightmare, but you can chose how you want to try to live in it. I trust science to help me fight cancer, but I’ve also paired it with alternative methods and have found that my tumors grown much slower on the Keto diet (it’s a hard diet to follow and can suck for someone who loves food), and use CBD oil which has helped me sleep better & decreases my pain & swelling. I think the doctors say months in terms of prognosis because a seizure or something can happen at any time when cancer is in the fluid and lining of the brain. It helped me to get my last wishes, accounts and all that taken care of so I could stop worrying if something happens. It was very hard, but has allowed some burden to be taken off my shoulders so I can focus on feeling good and enjoying my time.
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi. I originally went to Paoli Hospital in Paoli Pa which is west of philly like 45 min. My onc was affiliated with them. I had the first diagnosis with a different dr who left. This onc had terrible bedside manner but she is the one who put me on the methotrexate for a few weeks. I wanted to get second opinion and went to University of PA. The new dr said that I was too sick on the chemo so that’s why she had me do the rads. She said I would have better quality of life. Since finishing rads I feel better. I can actually go out for short times. I can’t drive because of the millions of floaters in my eyes though. I’m so overwhelmed not knowing what happens next??
  • Parrynd1
    Parrynd1 Member Posts: 343
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    I would say next is Xeloda, and then living life. You’ll scan in a month or depending on what your MO prefers to see if it’s helping. My MO likes to do it monthly for serious concerns, then 2 months for check-in. I know it seems like you should be doing things and have a flashing light above your head broadcasting TERMINAL CANCER, but for me trying to live my normal everyday life has helped immensely. So if you were happy before then do what your were doing to the best you can and do what you need to do to treat this. If not then make some changes. It’s a hurry up and wait game in many ways. Your MO should always be there to help you specify the steps or the plan if you need it.
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi.
    Thanks so much for your suggestions and support. I’ve been reading up on Xeloda. I am so afraid of the side effects. Especially the stomach issues (which I already have) and the hands and feet. I guess though if it gives me more time it will be worth it.
    Thanks again,
    Ilene
  • Ihopeg
    Ihopeg Member Posts: 92
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    Sorry, forgot to ask a question. What do you do to keep yourself busy? I have watched tv for like a month now and I am bored. I bought a bunch of craft stuff at the beginning but since my eyes are so bad I can’t focus. Also as I said I can’t drive anywhere. Any suggestion would help. Thank you ilene

  • Parrynd1
    Parrynd1 Member Posts: 343
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    I made a list of things I could do that would probably never get done otherwise, like clean and repaint the baseboards (I do just 1 or 2 sections at a time), I read, and I learned how to paint (link below is an example of instruction video) with this cool method. It’s not art quality and you don’t need to use all the products the professionals do, but they turn out nice. I’ve given several to friends, family, and people who have been really good to me. The expensive part is the canvas & medium but you can use the $1-2 little paints or if you have a way to get some free material that could replace the canvas. I use my stockpile of stone and tile I have from when I was in school. I also like making new recipes. Writing in a private blog has helped me sort through the emotions as well and it’s something I can leave for my loved ones. I also want to learn how to knit.
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi,
    Thanks for your post! I don’t see the link.
    Thanks. Ilene


  • Parrynd1
    Parrynd1 Member Posts: 343
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    https://youtu.be/TRJJayBcDFA


    Haha forgot to post it that’s why you didn’t see it! Sorry

  • hopeinchrist
    hopeinchrist Member Posts: 7
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    Hi, I was also diagnosed just a few weeks ago with leptomeningeal in addition to the brain met that was discovered at the time of my diagnosis. My onc wants to start me on intraventricular chemo with Cytarabine, methotrexate, and thiotepa. I've been told the side effects for this are minimal.

    I'm hopeful this is something that can be treated and controlled, but having only been diagnosed with cancer in October 2018, things have been a whirlwind since then. Everything I read about leptomeningeal seems so negative and I also want to focus on my quality of life. It all seems so overwhelming and my life has changed drastically in a period of months.

    To comment on what you ladies were talking about in regards to what to do to pass the time, I've also found painting to be very therapeutic, but I've been experiencing problems with my vision as well so I have to do it only for short periods of time.

    Anyway, I'm happy to know at least there are other people dealing with similar diagnoses and still trying to live life. I often find myself unable to connect with family and friends because people don't know what to say and I'm not able to accurately explain my feelings to them either.

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi!
    So sorry you have this diagnosis too. I was diagnosed in October too. One day I was at work and the next getting surgery to implant the intrathecal Ommaya reservoir to deliver the methotrexate.
    I agree with you about family and friends. I feel like I am sick of talking about myself. Everyone works and i just stay home all day.
    What problem are you having with your eyes? Thanks for your post!
    Ilene
  • hopeinchrist
    hopeinchrist Member Posts: 7
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    Hi ihopeg! Thanks for your reply!

    Yes, I also get tired of talking about myself too. And when I ask friends how they are they say something like, "whatever is going on with me is nothing compared to what you're dealing with, I want to hear how you're really doing". I want to say... No really, let's talk about your regular, every day problems for a while because I'm sick of talking about the latest in my cancer saga when nobody really understands anyway.

    I've been experiencing double vision with my eyes. It makes it really hard to do much of anything a lot of the time.

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi,
    How are you really? Lol i just say I’m ok to whoever asks. It’s nice unfortunately to have someone who understands. Do you have kids? Mine are older 28 and 25. They are doing a little better than at first.
    Did the double vision start at the beginning? Mine started with floaters in my eyes and neuropathy in my feet.
    Ilene
  • hopeinchrist
    hopeinchrist Member Posts: 7
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    I also try to stick to the "I'm okay" response. It is unfortunately nice to have someone who understands. I do not have any kids in actually only 33 and single. I'm sure it's hard for your children. It's been hard for my sister, who's just 3 years older than me and hard on my closest friends. I don't know about you, but the only thing worse than getting that kind of bad news myself is having to tell the people closest to me. I'm sure it's even harder when you have children you're having to give that sort of news to, I can't imagine.

    Yes, my double vision started from the beginning and I also started having neuropathy in my hands and feet. I also have seizures now, but they put me on medicine that has helped that.

    Again, so sorry that you're also dealing with this, but it is nice to hear from someone who understands.

  • Ihopeg
    Ihopeg Member Posts: 92
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    I PMed you if that’s ok
    Ilene
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    EV11, thanks for adding to my knowledge of ILC with your comments above.

    Ihopeg, I agree with EV11 that genomic testing of the tumor would be a good idea. I have ILC and my Guardant 360 liquid biopsy did find a Her2 mutation. The report suggested the targeted therapy neratinib could be effective for me. It may be my next treatment, when needed. (Her2 mutation, not Her2 positive/amplified)

    Another reason to get tumor genomics like Guardant or Foundation One is that even if you do not have a germline (all your cells) BRCA mutation, the cancer itself could have one (somatic mutation) and therefore respond to a PARP inhibitor. (This I learned listening to lectures by oncologists.)

    Regarding germline BRCA testing, if you were tested 12 years ago I think you should ask for a new test; more mutations have been discovered, more learned about certain variants.

    P.S. I am a great fan of Xeloda.

  • Ihopeg
    Ihopeg Member Posts: 92
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    ShetlandPony, Ev11,
    I went to dr today and she also said to do the genomic testing. So I will look into that. She also said I will start Xeloda this Sunday. I am concerned about the side effects to my gi tract and hands and feet. I’m am doing 1500 mg twice a day. One week on one week off forever. Feeling better now and then afraid I will feel bad. Any suggestions or comments appreciated. Thanks ilene
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Glad your doc is on board with the testing. See you on the Xeloda thread. I posted for you there.

  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi!
    I just wanted to check in and see how everyone is doing. On my 3rd week on of Xeloda. Not bad side effects except sweaty hands and feet. I also feel shaky for a while after I take it. I’m actually go on vacation with my son tomorrow. I’ve been nervous about it but I’m trying to just go with the flow. I hope everyone is doing well! Ilene
  • Ihopeg
    Ihopeg Member Posts: 92
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    Hi. I spoke to Dr about the genomic testing and she said I would need another bone biopsy since it was done in Oct. Confused about what happens next. Doing ok though. Thanks ilene

  • mike3121
    mike3121 Member Posts: 280
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    Just told today, after a cranial biopsy my wife's lining of the brain, the Dura or meninges, is cancerous. It's inflamed and putting pressure on the brain. This pressure has caused seizures, which via medicine, are under control. I want her on Joe's meds as soon as possible. I've seen statements from people with actual brain cancer say it worked for them. Maybe it will work for my wife, she has TNBC, which seems to be under control with Halaven.

    I've been crying a lot lately because there doesn't seem to be many treatment options. Maybe Joe Tippens Dog De-wormer treatment plan, Tumor Monorail ANG1005 and the Ommaya.


    MikeW.

  • mike3121
    mike3121 Member Posts: 280
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    Update: She's having a quick strong radiation of a knot of cancer cells, the ones causing the seizures. After that, probably tomorrow the Ommaya port goes in.

    Two points:

    The brain surgeon surgical team, aside from concentrating on her brain mets, added this.The MRI looked at by the brain surgeon team said it showed numerous cancer to the bone in hips and back. However, I remember asking my wife's oncologist about the differences, from a cancer detection point of view, between an MRI and PET scan. He said the main difference is the PET scan shows actual active cancer whereas an MRI can shows previous cancer, cancer that has been irradiated by chemo.

    Saw a not so scary statics of life expectancy of LM victims of 2 years. And it was a 2019 survey. Some really disheartening data out there.

    I guess there's hope.

    MikeW.

  • mike3121
    mike3121 Member Posts: 280
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    My wife and I met with the radiologist today; she said my wife has only a few months to live. Worst day of my life; the hurt is soooo unbearable. Live with someone for 48 years then it's suddenly all over. One point, I am not sucidal, I would never do such a thing. The radiation is just for palliative purposes and won't hold back the cancer. I'll post when she passes then leave this site forever, I hate everything about cancer!

    I delited some of the above - Too much of my yapping. I'm a nervous wreck lately with nothing to do as my wife sleeps all day. She's very weak and has a blood pressure of 102/?