Lepromenngeal

Options
2

Comments

  • Priyank123
    Priyank123 Member Posts: 11
    edited November 2015

    Hi guys,

    My mom has been recently diagnosed with LeptoMeningeal Metastases in the brain with communicating hydrocephalus. She had been diagnosed with breast cancer (ER+/PR+, HER2-) four and half years back. She had an NED status until September when this disease reoccurred at the worst possible place in her body. Surgery is not possible and her doctors think chemotherapy is a better option than WBRT(Radiation). She has floating cancer cells - no tumors. Her tumor markers (CA 15-3) were on border when the relapse of the disease was diagnosed. MRI scan and Lumbar puncture confirmed the presence of cancerous cells in the Leptomeninges. Symptoms like Veritgo/Migraine like headaches have been there since April this year. Body balancing issues have been there since one year. She also had cataract operation of both her eyes last year - dunno if the cataract had any connection with the disease?

    She had been treated with Intrathecal Methotraxate (MTX) alone initially and later on Xeloda was added to her treatment. She has completed 12 doses of MTX and two cycles of Xeloda till now. Initially, MTX took a tool on her body. She had to be hospitalized after her first MTX dose because of seizure like instances and dehydration due frequent vomiting and loose motion. The seizure like events were very frightening for us to deal with. I had never seen my mom in such a state! Seizures and other side effects(vomiting and loose motion) of MTX were brought under control through medication. After her sixth dose of MTX, Xeloda (Two weeks On and One week Off) was added to her treatment. Xeloda has caused a lot of water retention in her body, minor hair loss, frequent urination, anxiety, sleepiness, few black patches on her skin and loads of cough. Other than that she hasn't had adverse side effects of Xeloda like the hand-foot syndrome till now. During her one week break she has recovered well and she feels good as well as she is good spirit. She has started her third cycle of Xeloda today- 1500 mg twice a day.

    Recently she has started complaining of double vision. Also, she feels weak and tired after doing any activity. She also sometimes complains of feeling of emptiness in her head - as if nothing is there inside her brain and also complains of cramps which start from her brain and go down to her hand and spine. She also complains having trouble with concentration and focus. She is unable to meditate. She does her yoga exercises though. Other than that she has been doing fairly well. Her body balancing issues are gone, her Veritgo/Migraine like headaches have gone, vomiting has stopped completely...all the initial symptoms seem to have been brought under control. Overall she feels good and is in good spirits. Does this also mean that the disease is under control and it has not progressed?

    We have done three more lumbar puncture tests or the CSF Cytology tests in the last two and half months, unfortunately the cancer cells are still there in her cerebrospinal fluid (CSF)Sad. Are there any tests through which we can do a comparative analysis of the effectiveness of the treatment given to her - like a before & after study??? Is there any way to find out the exact number of floating cancer cells in her cerebrospinal fluid (CSF). What kind of tests does your doctors ask you to do?

    Is anyone getting medication to reduce the long term toxicity of Intrathecal Methotraxate (MTX) or Xeloda??

    Is anyone using Cannabis to treat their brain mets? Is it effective?

    Apologies for the long post:)

    · Share on FacebookShare on Twitter
  • Priyank123
    Priyank123 Member Posts: 11
    edited November 2015

    Hi guys,

    My mom has been recently diagnosed with LeptoMeningeal Metastases in the brain with communicating hydrocephalus. She had been diagnosed with breast cancer (ER+/PR+, HER2-) four and half years back. She had an NED status until September when this disease reoccurred at the worst possible place in her body. Surgery is not possible and her doctors think chemotherapy is a better option than WBRT(Radiation). She has floating cancer cells - no tumors. Her tumor markers (CA 15-3) were on border when the relapse of the disease was diagnosed. MRI scan and Lumbar puncture confirmed the presence of cancerous cells in the Leptomeninges. Symptoms like Veritgo/Migraine like headaches have been there since April this year. Body balancing issues have been there since one year. She also had cataract operation of both her eyes last year - dunno if the cataract had any connection with the disease?

    She had been treated with Intrathecal Methotraxate (MTX) alone initially and later on Xeloda was added to her treatment. She has completed 12 doses of MTX and two cycles of Xeloda till now. Initially, MTX took a tool on her body. She had to be hospitalized after her first MTX dose because of seizure like instances and dehydration due frequent vomiting and loose motion. The seizure like events were very frightening for us to deal with. I had never seen my mom in such a state! Seizures and other side effects(vomiting and loose motion) of MTX were brought under control through medication. After her sixth dose of MTX, Xeloda (Two weeks On and One week Off) was added to her treatment. Xeloda has caused a lot of water retention in her body, minor hair loss, frequent urination, anxiety, sleepiness, few black patches on her skin and loads of cough. Other than that she hasn't had adverse side effects of Xeloda like the hand-foot syndrome till now. During her one week break she has recovered well and she feels good as well as she is good spirit. She has started her third cycle of Xeloda today- 1500 mg twice a day.

    Recently she has started complaining of double vision. Also, she feels weak and tired after doing any activity. She also sometimes complains of feeling of emptiness in her head - as if nothing is there inside her brain and also complains of cramps which start from her brain and go down to her hand and spine. She also complains having trouble with concentration and focus. She is unable to meditate. She does her yoga exercises though. Other than that she has been doing fairly well. Her body balancing issues are gone, her Veritgo/Migraine like headaches have gone, vomiting has stopped completely...all the initial symptoms seem to have been brought under control. Overall she feels good and is in good spirits. Does this also mean that the disease is under control and it has not progressed?

    We have done three more lumbar puncture tests or the CSF Cytology tests in the last two and half months, unfortunately the cancer cells are still there in her cerebrospinal fluid (CSF)Sad. Are there any tests through which we can do a comparative analysis of the effectiveness of the treatment given to her - like a before & after study??? Is there any way to find out the exact number of floating cancer cells in her cerebrospinal fluid (CSF). What kind of tests does your doctors ask you to do?

    Is anyone getting medication to reduce the long term toxicity of Intrathecal Methotraxate (MTX) or Xeloda??

    Is anyone using Cannabis to treat their brain mets? Is it effective?

    Apologies for the long post:)

    · Share on FacebookShare on Twitter
  • letmywifelive
    letmywifelive Member Posts: 360
    edited May 2016

    Hi All,

    My wife was diagnosed with LM in spine area with the following report as part of her MRI : "Enhancement of the cauda equina nerve roots at the level of L5 and S1, suspicious for leptomeningeal disease". Can someone comment what sort of prognosis she should be looking for ?

    Thanks.

    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Hi LMWL,

    I can't give you a prognosis for your wife, that's something to discuss with her oncologist(s) as they discover more about LMD and other confounding factors.

    Those I've known with LMD usually get it very late in the course of their MBC history, so it's impossible to sort out that one factor from all the others.

    Ask her oncologist(s) - Have the best tests been done? Or does she need conformational testing of another type? How's she doing overall? What other health challenges is she facing? How is the cancer responding to therapy? How much and how fast does the cancer seem to be progressing? Etc.

    Definitely conversation time!

    I have heard of using intrathecal chemotherapy and HER2 medications for treatment:

    Intrathecal chemotherapy is most effective in patients with… breast cancer. However, intrathecal treatment requires invasive procedures, preferably implantation of an Ommaya reservoir or repeated lumbar punctures. http://jjco.oxfordjournals.org/content/33/5/229.ab...

    Here's another article, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC362383...

    You are a good researcher and should be able to get general answers online, but need very specific ones for your wife's situation.

    Conversations! Discussions! Debates on the best next steps to regain health, well being and cancer control.

    LMWL, keep reaching out for answers and ask her personal experts to give their expert opinions, seeking second and third opinions, if necessary.

    Healing loving kindness, Stephanie

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited May 2016

    Thank you Stephanie, my LM was in the lining of the brain in the right parietal section, so I cannot comment any more than what you have said. LM is pretty serious, but saying that, we are all so very different and although I was given weeks, perhaps months because of LM, I am still going strong three and a half years later. Technology has progressed quiickly since then and I hear of more people having long and successful lives after their LM diagnosis.

    LMWL,stay strong and wishing your wife all the best with her treatment. Keep in touch.

    Mandy xxx

    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Hi Mandy,

    Thanks for bringing your real life experience!

    It's encouraging to me too to learn of longer survival with LM. As I mentioned, my friends' diagnoses came near the end of their long and medically complex cancer lives. It was impossible to sort out the LM from the other factors affecting their survival.

    LMWL, please keep us in the loop and let us know if your wife's diagnosis is confirmed and what the treatment plan is.

    It helps so much to learn from one another.

    Thanks again, Mandy, and hats off to you for coming out ahead of the curve. :)

    warmest healing wishes, Stephanie

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited May 2016

    HI Stephanie, I wish there was a "like" button the same as facebook on some of these threads. I just wanted to thank you for your reply, and I wish your friend the very best of luck, and I am also hoping that they find the cure for cancer soon.

    hugs

    Mandy xxx

    · Share on FacebookShare on Twitter
  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    Mandy, thank you for your story here, that give us hope, a lot of hope! What treatment did you have for LMD? Did you get an Ommaya port?

    LMWL, how is your wife doing? Have you had any further discussions with her doctor about LM?

    I recently posted about my own worries that I am about to be diagnosed with LMD so anything I can learn is helpful.

    · Share on FacebookShare on Twitter
  • letmywifelive
    letmywifelive Member Posts: 360
    edited May 2016

    PurpleMinion, my wife's LM is near her lower spine. We spoke to her Oncologists at both UCSF and Stanford and their comment was "it does not add to our concerns". So I am feeling little less worried now.

    · Share on FacebookShare on Twitter
  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    LMWL,

    Have they suggested any treatment for the LM specifically? I wonder if you would consider sharing your wife's diagnosis and treatments by making that part of your profile "public" in the settings? It would be interesting to see what else she has going on, what she's tried etc. to help follow your story and enhance conversation with others who may have similar conditions/concerns...

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited May 2016

    LMWL, I agree with Purpleminion. I would so love for people to add to this thread as they go about their journey. LM is so overwhelming, but hopefully with technology, there will be more people added to this thread so that it gives people hope. I only check this thread once a week so my aplogies in advance. Sometimes I forget and then in can be once every two weeks and so on. Chemo brain and family commitments are to blame lol. xxx


    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Two resources:

    Blog by Laurie: not just about cancer

    One woman's stories, adventures, observations and rants, lived through and beyond metastatic breast cancer.

    http://notjustaboutcancer.blogspot.com/2016/05/may...


    Musa Mayer's introduction to LM mets

    http://www.brainmetsbc.org/index.php?q=node/44

    Healing wishes, Stephanie

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited May 2016

    thank you Stephanie for this information. hugs to you. xxxx

    Mandy

    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Hi Mandymoo,

    I'm doing quite well - happy, useful and enjoying warm days on the farm where I live.

    So grateful to be alive...and grateful you are too, Mandy!

    It does my heart good to hear from someone who's lived well after a diagnosis of LM!

    warm hugs, Stephanie

    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited July 2016

    Hi ladies, so great to find this little thread (thanks mona)!

    I was diagnosed with LM 2 weeks ago. At the moment I'm having WBR (halfway thru), some headaches & not much sleep. I will be seeing my onc soon I hope to discuss further treatments.

    It's so encouraging to see that some of you have been living with this for quite some time! The first thing I read said it was end stage, so I was feeling very down. My kids are 18 & 21, but I really want to see them grow up more & develop long term relationships etc etc- and I want to have some more time & fun with my wonderful DH.

    I hope you all continue to do well!

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    kt1966, sorry I took so long in replying, but my elderly mother has been very ill the past couple of weeks and she has just been released from hospital today, so I have only been focussing on her. Wishing you good luck with your treatment. Yes, it is supposed to be end stage but technology is advancing and since I started this thread, as I was so lost and confused, I am happy to say that there is a small light at the end of the tunnel. Keep in touch if you can. Warm hugs

    Mandy xxxxx


    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    HI Stephanie, I am happy to hear that you are doing well. Wahoo. Here is hoping that we will get a nice little group together and show the newbies, that there is a chance to keep on going/living long with LM. warm hugs. Mandy xxxxx

    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Hi Mandy, nice to hear from you :)

    I'm sorry about your mum, I hope she's doing better now.

    I'm really hoping to follow in your footsteps and live for a long time following my latest progression. I have a private in depth oncology appt on Tuesday to discuss my options etc so hopefully will get a plan in place very soon.

    I finished WBR on Monday. The last couple of days I have been sooo fatigued, but at least it means I sleep better despite the dexamethasone. My hair is also falling out with a vengeance (they said it would prob just thin, but no!)

    I'm glad the xeloda has worked so well for you. I only managed about 10 months on it before it failed me, so I guess I'll need something else.

    Take care, & thanks again for your inspiration :)


    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    HI Stephanie, my next regime will be Afinitor and Aromasin combination, but that is probably because I am still NED in the brain thank goodness. However, my lungs are giving me grief at the moment, so one step at a time. Let us know how you get on with your Oncology appointment on Tuesday. I may not get back on the computer until Thursday thought. Good luck. Warm hugs.

    Mandy xxxxx

    · Share on FacebookShare on Twitter
  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited August 2016

    Hi Mandymoo,

    Always good to hear from you, because you're one of my MBC superheroes.

    Just to clarify, I don't have LM mets, but wrote in response to the revival of this topic. Several of my close friends had them, so I got to walk that road with them - until our paths parted.

    I do have lung and pleural mets, so I understand that. These days, I'm most troubled by my liver which has grown to an enormous size for my tiny frame. Yikes!

    I did go to the oncologist last Tuesday and it was our usual love fest. We've been together for 24 years this month and are super tight now. Not many tears at this visit, yet the warmth and closeness were palpable. He said he'll come to me when I'm home bound. I'm so incredibly touched.

    Life on hospice is good - nurses come daily now and they are also becoming close friends through their care and our conversations.

    Feeling so very fortunate.

    Mandymoo, welcome to your spring time! It's harvest time here in California - melons and tomatoes are at peak. What an amazing world we're fortunate to visit.

    much love, and a big hug, Stephanie

    · Share on FacebookShare on Twitter
  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited August 2016

    Another blog -- Darn Good Lemonade
    Diagnosed at 30, just recently diagnosed with LM mets.
    Ommaya reservoir

    http://www.darngoodlemonade.com/

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    Oh, Stephanie, thank you for filling me in, and yes, LM is the pits. Although, I must admit, that I have been told that there is progression in both lungs and that my pleural effusion is increasing in size again and so I am changing from Xeloda to Afinitor and Aromasin combo. So, the cycle of fear and worry and courage must continue.

    ICanDoThis, thank you for the website, Mandi is so inspirational, and I will continue to follow her blog. Fingers crossed for her.

    This is our last month of winter now and soon we will see the little duckings in our local pond. I always look forward to counting them when I am walking our dog.

    Warm hugs

    Mandy xxxxx


    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Icandothis, thanks for posting about Mandi's blog. It's great :)

    Mandy, I can't wait for spring too. It's pouring rain here today & I'm really over grey & wet!

    Are you allowed to drive? I'm not & I'm missing my independence (& can no longer work as I was a rural postie)

    I had an hour long appt with my onc last night. The plan so far is to have a brain/spinal MRI & lumber puncture to get csf to test for receptors. (Was ER/PR+ but had pleural effusion last year that was ER/PR-) Then I have an appt on 22/8 to decide on a treatment regimen. He said without treatment I'm prob looking at around 2 months....

    I sure hope we can find something that works as long as xeloda has for you Mandy! Unfortunately it won't work for me as I progressed to pleural effusion while on it.

    Hope everyone is well x

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    KT1966, I also have a pleural effusion now. So I am going on to Afinitor and Aromasin combo (no LM evident at the moment). I am so sorry that you cannot drive at the moment, but I am really hoping that the next line of treatment for you will get rid of LM and that you can get back to driving. sending you warm hugs.

    Mandy xxxxx


    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Hi Mandy,

    I hope A/A deals to your effusion. I'm so glad there's no sign of the LM.

    I had my spinal MRI & lumbar puncture yesterday (brain MRI next week now) and was immediately sent to the acute oncology dept of my hospital. I have a 15mm x 9 mm tumour on my spinal cord at T10-11 and oedema from T5 to the conus (bottom of spine).

    I ended up having a CT to plan rads treatment, tattoos and my first radiation treatment all within 3 hours! Amazing how quickly they can get things moving.

    Very scary tho. Every time I go to scans now I seem to end up in hospital with bad news :( I'm not looking forward to the next one....

    I hope everyone else is going to get better news than me. I could use a break!

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited August 2016

    Oh, dear KT1966, I do hope you get better real soon.You have been through a lot lateley and I will be thinking of you and sending you healing thoughts. Glad that they moved so quick, Fingers crossed for you. Sending you warm healing hugs.

    Mandy xxxxx


    · Share on FacebookShare on Twitter
  • Sunflower964
    Sunflower964 Member Posts: 12
    edited August 2016

    Hi all, just found out today that most of my brain mets are to the meninges. Came as a bit of a shock as I don't remember it being mentioned when I got the brain mets diagnosis last week. Anyway, I am starting on Xeloda tomorrow and very much hoping to follow in Mandy's footsteps...

    Best wishes with your treatments,

    Sunflower964

    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Hi girls.

    Thanks for the hugs Mandy :)

    Sunflower, it's hard to process all this info etc that gets thrown at us, isn't it? I'm glad you can do xeloda. I found it quite tolerable when I was on it (for nearly a year before I progressed)

    Go well

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    kt, You do deserve a break! Sending ome positive vibes your way and hope the next scan will be good news. I get MAJOR anxiety several days before my scans. So far none of them have been terrible but not great either. It wears you down for sure. Take super care kt, I hope things look up for you.

    You too Sunflower, best of luck on the new med!

    · Share on FacebookShare on Twitter
  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    I hope the xeloda is going well, Sunflower.

    Thanks, artist- positive vibes are always welcome :)

    So, my brain mets have shrunk (apparently I do have some, esp one on pineal gland) and LM still there. I will be starting vinorelbine next week (weekly). The lumbar puncture wasn't helpful & they don't want/can't do a liver biopsy.

    I'm having a baseline CT on Thursday.

    Go well everyone. Thinking of you

    · Share on FacebookShare on Twitter

Categories