leptomeningeal metastasis
so I have been diagnosed with them (lesions in posterior cerebral fossa on cranial nerves and in spine).
chemo changed for Enhertu trying to stave off a disease while the preparations for intratecal chemo via Omaya reservoir going.
Looking back in the hindsight there were symptoms of it in August, just not visible on scans..
will report the progress here in case it is useful
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Anotherone, I am sorry to hear that you have leptomeningeal metastasis. My sister also had MBC, but HER2+ disease and it was devastating news to our family when she got LM. Fortunately I understand that there have been positive treatment developments since then. I wish you well. In French there's an expression "Bon Courage" which can be described as wishing a person some real strength in heart as they go through an ordeal or difficulty - I can never think of a good English equivalent.
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yep - it is not over until it is over
still working :)
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@anotherone, we're so sorry to hear that. Hang in there! There is plenty of support on the boards just waiting for you. In case you weren't aware, we have free weekly virtual meet-ups via Zoom. We have a list of them here, some specific for MBC members: You are more than welcome to join us there too.
We hope everything goes well with treatment. Please, come back to let us know how you're doing.
The Mods
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So there were 2 intratecal infusions. After first one I had headache on and off, that lead to me throwing up , pain in the neck muscles, worsening of the symptoms. Had to cancel some working days, felt like death - when I was going for second intratecal session I have thought that if I collapse nobody will continue with any treatment.After second intratecal session I do not have any headache and able to do housework etc - may live for longer. :)
I have an impression that Enhertu stopped/greatly diminished progression but I had it delayed for 3 weeks due to suspected UTI and difficulties in communication between all stakeholders - I guess that is why I was feeling so bad. Resumed Enhertu today.
Have MRI planned for tomorrow.
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Hugs to you @anotherone 😊. Thank you for keeping us posted. 🙏 for your MRI tomorrow.
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Rooting for a good mri tomorrow @anotherone In your pocket!
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I hope mri was ok!
Best wishes and thank you very much for sharing your experience
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Thinking of you and rooting for you with pom-poms of hope and love. Hope you have big pockets, as there will be a lot of us in there.
Eleanora
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Still alive :)
MRI did not show any progression - the lesions are either smaller or the same. We know though that MRI does not see leptomeningeal metastasis in many cases - still it is nice to know that intracraneal have got unruly so that intratecal chemo is not stopped. Had a third session of it , not bad but not so good as after second one - have episodes of headache and tiredness ; nothing so bad as it was after first one. I have searched a bit side effect of intratecal chemo and it does not appear so innocuous as my doctor mentioned - one person even became paralysed due to drug induced arachnoiditis ( from about 100 or 150 enrolled- I do not remember), about 30% had headaches , then nausea, vomiting, a few percent had "minor" neurological symptoms etc. Apparently Ommaya reservoir patients survived about twice as long as lumbar puncture ones - I have planned the reservoir insertion in 2 weeks time, not sure yet what day so looking forwards to it - apart from giving me best chances of survival I would not have to go through not sedated lumbar puncture sessions which are not fun.
Still losing hearing and deteriorating balance. Looking forward for it to stop as if it does not …
Thank you for your support and good wishes
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Sending gentle hugs and comfort vibrations your way, anotherone. Hoping for the best outcome for you.
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@anotherone did your Onco recommended radiation? What kind of symptoms are you having? Me, I can’t talk, I slur, and my right arm numbness. MRI rule out strokes. They did biopsy of my brain membrane because the lumbar biopsy is negative, the membrane is positive.
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hi anx. There is no reason to do any radiations I assume as the oncologist can not see the disease he would want to irradiate if that makes sense…
I guess I could have WBR in a hope to hit that possible insidious metastasis that causes deterioration in my VIIIth nerve… But it may not be cancer. It may be necrosis or smith else… Although I think it is most likely cancer… And if it is metotrexate intratecally and Enhertu are not enough to stop it .. I honestly do not know what is best to do. I have a second opinion appointment with a very possibly one of top doctors imo in the country in a week - see what he says. At the moment we can revert back to weekly metotrexate ( although I think it was the culprit in my ALT/AST going high for the first time in this cancer journey so weekly administration of it if it is truth is unsustainable ), change metotrexate for herceptine (although the MO which administers intratecal chemo is humming that it is experimental, yada, I did feel unwillingness in him to do the change) or change Enhertu for something else …
My RO basically said he is not sure why my VIIIth nerve is going down and did not suggest anything. IF 2 other MOs do the same means to me "what do you want, even just being alive is an achievement, leave us in piece, we are not magicians".
Still working, I think I do a very good job actually with what I do - although the new MO and 1 of the managers of one job stated that their advice is to contact my regulatory organ and indemnity to fill them on what is going on. For now my answer is firm - "I do not think it impacts on my work" as the regulator is as useful as chocolate teapot here I think and not trustworthy at all; I remember notifying them when I stopped working for unrelated health reason and they organised fitness to practice hearing for me ! It was extreme stress , money spent by defence organisation and me, then in 4 month the verdict "no case to answer" were issued, then I found that I did not have to notify them at all! Not intending to repeat the mistake. Still leaves sour taste in the mouth..
Anyway if the hearing loss continues I would not be able to work - I guess I could organise quick ENT meeting and the audiologist w/hearing aids which may help for a while…
The other issue is that after changing for local oncologist the things are sloooow which I find frustrating - I do not have that time! Not much private market in the province I guess compared to the capital and specialists working in both social and private system with a corresponding outcome…
My partner wants me to continue living, my daughter who is 19 as well - I think me living for more at least under a year would be good for her from the pod of exams, school, life, money etc but hey ho - we shall see. Anyway the last 3 months I consider were lived because I was persistent and lucky and they were definitely worth living.
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ah, have Ommaya port now and no headaches. Thank you, Olma
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Hope the second opinion offers some treatment options.
Sending positive thoughts and warm hugs.
Eleanora
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Hopefully hearing aid on Tuesday as the hearing loss worsens
Second opinion (renowned oncologist in the UK) said that effectiveness of Enhertu is the same at 75% as it is at 100% dose - everybody who is on it or can be on it take note - and Enhertu seems the best treatment for me. Intratecally he favours Herceptin and Deposit over metotrexate. See if these changes are incorporated by my treating doctors and are helpful. If not I will become deaf within a couple of month and hearing aids will not help as well as not able to walk due to the balance issues (even now I am feeling sick/ish sometimes with normal motion). I may not be able to lift the head then - I guess sedatives switching off the cortex of a brain is an option in this case. Having an MRI and PET/CT scan due.
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@anotherone I wish you all the best! It seem like Enhertu is very effective for many patients
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@anotherone sending lots of strength and love from our team!
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update - hearing loss continues. Very frustrating and character changing. Will not be fun when it goes completely. Balance deterioration continues. Intrathecal herceptin started yesterday, about 20 mg, the full dose is about 100 mg - dose escalation protocol. Numbness in my legs and paralysis in face increased. Next infusion of Enhertu should be at 80%. Let's see if herceptin helps…
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@anotherone This diagnosis is horrific. Please know I'm sending support, prayers (if accepted) and love. When you are up to the 100 mg, may the treatment stop progression and restore you to better health. I'm so sorry to ready this but I recall your resiliency in dealing with this. May it come thru for you again.
Laurel
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thank you Irishlove
well, I have a few diagnoses that can be considered horrific and I keep in mind there is an option for response at lower dosages so would be nice if it did well before getting to full dose - indomitable optimism !😀 anyway we are all going to die.
Still working - instead of "My health does not interfere with my work" the spirit is "yes, it does, here is the situation - you tell me what to do" - for now job places seem to want me so with this air work is all right even with this level of the hearing/health
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update
the dose of herceptin is full now, the dose of Enhertu has been adjusted to 80%
Enhertu is so much easier and it is so nice not to have steroids.
Generally I feel OK (one could live indefinitely feeling like this, not a top athlete but I do not expect it)
The hearing loss and balance keep worsening; as we use for balance a lot vision it is not that important but hearing loss proved to be challenging ; it impacts on life many times throughout the day and in many situations and it continues. I am careful not to say that I am deaf but verbal communication is possible only when I see the person talking and when the person uses simple words, short sentences and talks slowly and I know the context and we are lucky. It changes a lot of stuff . Still working although slower as understanding people is a challenge.
My partner downloaded sign language and is planning to study it with me, my daughter has exemplary patience with me - she is in the middle of exams that decide whether she would go to uni this year or not, my heart goes off to you who do this journey alone - it would be so much more difficult without them! As my friend rightly said when I mentioned my challenges to her "one can live without hearing". My knee jerk reaction was to think"yes, and without legs, eyes, arms, speech etc - would you tell someone without all of it that one can live as one is in response to them updating you?" but I did not address that part of her email in my response as I quickly cool down.. But she is right of course - one can see it as a glass half full or half empty… I thought that I am now likely to be the best I will ever be in terms of faculties and that in the future I can think back to today and think how could it was - scary thought..
Cancer seems to be stable now or reducing but it has been like that on scans even last time; my CSF protein is in normal range (which is relatively new). So I am likely to live in this state for at least few more months - I may as well study BSL…
Planning holiday for the end of June, will book tickets knowing it may not happen but with enough certainty that I would do it.
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short update - minimal progression on MRI, doctors say hurrah which is a bit funny in a way from my perspective as I am communicating with others only by speech to text app - basically I am deaf. I do not hear the doorbell, alarm, cars etc. I am wobbling when walking as the hearing and balance are resposibility of the same cranial nerve - VIIIth. Holiday tickets booked, it should be fine - whether it is linear progression it will not be so bad as dying in 3 weeks and if it is going to plato once it destroyed my VIII nerve on the left fully ( it was destroyed on the right as a result of radiotherapy - if not would have been destroyed by cancer that would have done more damage ) and it would be compatible w/life (if that cancer area is fried once by SRS -at some point in it getting bigger surely the doctors would want to do it, or posterior fossa radiation, or WBR) I would not look into being bedridden for even longer.
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Dearest @anotherone Your strength and attitude are commendable. I suppose it's not very useful to correct some people, but sometimes it just feels they need a life lesson. Good on you for moving on. Hearing is so much more important, as you say, than a lot of folks can understand. My cousin's DH has a hereditary hearing loss. He worked thru alot of PT as a child to deal with being off balance. He's gone thru so many "miracle" hearing aides that the vendors are richer and he is poorer. His family has all learned ASL, and he does lip reading. I have severe tinnitus so I depend on lip reading, too. I truly hope you are able to get your holiday partying in and enjoy it. Your family sounds quite supportive and lovely. Thinking of you and praying progression stops NOW!
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@anotherone we send you love and strength! Agree with @irishlove ! Let the progression stop!
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Irishlove, humblyfying example - I di not know there were so many people with hearing issues until I got it myself.
So holiday been and gone , I am very happy - my daughter who last was there 4 years ago has related to family and friends differently now that she is 19 and back then she has not been to all the places we went now; my partner was there for the first time in his life and he is so impressed with how different it is he could speak about it for hours; I enjoyed it and have not handicapped the party much; my dad's ashes were scattered at the place of his origin and it was very good that we went there. At the time it felt as if I was in a whirlpool but that is part of experience :).
I am definitely wobblier - the next stage would be moving only with some immobile support. My eyes do not form one picture specially far away as some of the oculomotor nerves are affected. pain in muscles and joints that subsides greatly after stretching -if no stretching happened for a few days I can wake up in pain due to it. paracetamol once /day and stretching seem to take care of it but it is annoying. The radiation oncologist says there is nothing else he could do for me so do 2 medical oncologists who deal with me. asked about proton beam therapy - half of the centre's contacted responded it is not suitable for me. One of my working days stopped at the end of May (the first one to stop was in January -I have taken many days off due to medical appointments and was throwing up once at work while there was someone else of my colleagues eyeing up that day - no brainer that it was given to him ) - I was very good at work imo, it has stopped "just in case" and because I was/am quite stubborn and would not compromise what I do to compensate for someone else's issues. Now there is a question that I ask myself about 2 other days/week that I still have - would I be able to work, to which extent I want it and need it/when I would be unwilling to engage in doing what I think is not good enough work/not want it…
My daughters exam results come in in the middle of August, I am likely to know them/plan with her. Yippee!
I am so glad to survive till she is 19 - a lot of stuff that she would need to forcefully do in case of my death is solved by now/ she does it anyway because she is more grown up so my absence is not going to be that big a hole in her life compared to me dying when she is 15, 8, 2…
Mind, one of my best friends had her mother killed when she was 5 - she is a very worthwhile person so it does not mean that one is going to be bad if their parent die when they are young :). she had a full family though while me and my daughter's father separated when she was 1…
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reviewed a lot of stuff that I had and given away a lot of it to friends/binned some/ prepared some for my daughter to sell. done some gardening. Holiday as I mentioned. Paid off the mortgage. going to see a friend this weekend and receiving my partner's children next weekend, both with overnight stay. Life is a blast :)
Had a dream tonight where some adversary creatures were after me but I knew it is going to be all right as in a fairytale; I told one of those creatures that I guess he did not want to hurt me really the same as I did not want to hurt him :)
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another one of my working days left 10 days ago on my initiative - too many handicaps to continue there. Only one left, not sure whether I would keep doing it.. Wobblier still - leaving the house with cane is not safe. Usually walk touching walls/doors etc. On an open space can not reliably step at all, not reliably a few steps. Numbness of face progresses. Making enquiries with a centre that does proton beam therapy just so that I know I have not left a stone unturned. Stoped going for pilates. Still going to swimming pool and heatwaves, eating nice food, enjoying interactions with friends, my partner, my daughter. Having certain activities with my partner, adding some more to my daughters' world vision, looking decent ( well considering I am losing weight - 46 kilos now, have paralysed part of face, I am 51 and have very short hair after losing it on enhertu I am not looking my best so that statement is to be taken with a pinch of salt ), sleeping well - almost curious to see how it will develop further.
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Hi. I admire your strength and courage reading this thread.
My sister was just diagnosed with this same metastasis. Her sight was affected, and she also has neuropathy and is a little uneasy on one foot but is getting around OK. Although she was just mapped for WBRT, her RO told her about a colleague that is running a trail on proton therapy, and they are having such good results they have opened it up to all patients and not just randomized. She met with this doc, and treatment should begin this week.
I am very encouraged that this treatment could possibly get her to a remission. I am also encouraged reading your journey with this awful disease. Hope you can also be a candidate for proton.
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The German clinic responded -proton beam therapy is not indicated for me. Left the remaining day of work mostly due to wobbliness. It is an achievement to do anything in an upright position due to wobbliness, tiredness, a little of nausea, weakness, not great eyesight. More difficult to talk due to spreading facial numbness and eat and drink, stopped arranging meetings with anyone that involve food or do it with caveats. Eating with a kitchen roll under my face/above it often. Playing cards, spending time with my daughter, skin contact with my partner, wine tasting, minimal gardening, cooking sometimes still. In a bit of a pickle - my daughter meant to go on another side of the planet for about 6 months(at least a few months) starting October - would be inconvenient if I die while she is away as she is my only beneficiary but staying here and waiting until I die feels very wrong as well and hurrying diying now before she goes away does not feel right either. We agreed that we will reassess at the beginning on October; if it seems like I will survive less than 3 months she would delay her departure and if it seems like I should survive for at least 3 months she would go. Her ticket is for 14th of October but she has other arrangements in London and in Europe meaning she would leave home 02/10 - she can always come back after these arrangements and delaying flight. Off to see my friend for a blended soup and tiramisu ( I discovered god one for the first time in my life recently!), shelves less than 5 minutes normal walk from here but for me and a walker it feels like an eventful journey😂. Taken from this website the idea of toasted bagels with ream cheese, it was Shetland Pony who mentioned them - since then eat them in her memory and share this meal with anyone giving credit to her.. She could not eat it anymore as she had bile duct obstruction so I do it for her.. If I can not continue eating it due to facial numbness please take the torch xx
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update - vision got worse to the extent of me not seeing texts/ interfering with cooking/ struggling to type this/not seeing expressions on faces etc. May try glasses for close vision. No more gardening - too much hassle/too difficult.
Doctors saying to stop the treatment - inclined to do what they say, will talk with them tmz and later on today.
Watched a Beautiful mind with my daughter. Eating bagels with cheese became a chore, more into softer/pureed things now.
my daughter will likely not go anywhere as I likely to die within a few months so now I want to die quicker so that she and my SO can continue with their lives - I do not like them being put on hold and do not feel comfortable with it at all. Still no pain, I think I am likely to take benzodiazepines because I am distressed before I feel pain -I wonder to which extent they will remove consciousness..
Basically if there is a point for one to stay alive in my position it is still very doable. so 5 years + after ds of cancer stage 4 is not bad.I do not see it though in my case. though. The accounts are done ( they are submitted, not paid and done yet but I can not do anything to do them quicker now)
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