My onc told me today that, after over 9 years with pretty asymptomatic liver & bone mets, (a) I have bone met progression in my skull - noticeable “lumps” on forehead; and (b) MRI scan has picked up some meningeal mets near these. Onc’s changing my hormonal from exemestane (been on it for 7 years) to Faslodex, with a “wait & see how that does” plan of action.
Anyone have experience of meningeal mets? Many thanks for any info/advice/reassurance.
Love to all - Marilyn (ex-Xeloda Queen) xx
Marilyn I am afraid I have no experience, info, or advice to offer but I am so very sorry to hear that you have this progression. I don’t know about you but as I go on year after year with ‘just’ bone mets I have moments when I have thought it will stay that way specially as I have just another 2 yrs and I will hit the big 70! But I do wonder if I will get there as I start to notice little things ‘progressing’ and the ever relentless pain marching on. I had a lot of bone mets in my skull when first dx with 2ndaries in 2002 but they were the first ones to ‘disappear’ on the first scan after treatment with bisphos. but they did pick up on recent CT scan that some of the bone mets were now xxxxxxx (can’t remember the word - but means building up bone rather than leaving holes!) They think it can possibly be signs of healing rather than progression so are playing wait and see. Have you any other symptoms apart from the lumps? Fingers crossed for you that the change to Faslodex will sort the blighters out.
Dawn
xx
Sorry Marilyn, I can’t help you either but I hope the change in treatment works really well. Although I have been living with bone mets much less time than you or Dawn I do identify with the ‘just’ bone mets and wonder what is to come, despite my onc being incredibly optimistic. However I still don’t think he has xray eyes or indeed a crystal ball so I soldier on. Good luck with the treatment.
nicky x
Hi Dawn & Nicky
Thanks for your replies & good wishes - it’s been such a shock, after so many years of “stable” and asymptomatic bone & liver mets, but like all of us long-term metties, I’m always waiting for “the next thing”. Just didn’t actually want it, really. (Who does?)
I also had skull mets when I was first dx with bone mets, but these were in a different place, and never evident or painful - new ones are more pronounced and obvious, but don’t actually hurt. As for the meningeal mets, that’s a totally new concept for me - onc talked about doing a lumbar puncture to see about further spread, but ruled it out as too interventionist and not necesary at this stage. He also spoke about having some rads - Mohecan hair-do, anyone?
Hoping Faslodex is effective, but not looking forward to injections! (ouch!!!)
Marilyn x
Oh Marilyn I’m so sorry to hear about your new mets after all this time. You may be an ex Xeloda Queen but you’ve certainly given a lot of hope and encouragement to those just starting on the drug - what a legacy.
Can’t help with your news though as no experience being a ‘bones only’ girl but hopefully the new treatment will bash the buggers! Hope someone who knows spomething about meningeal mets will spot this thread and give you some encouragement.
Do keep us updated when you can. Big hugs xx
Hi Julie - thanks, and hope you’re doing well! xxx
Sorry Marilyn - another who can’t help / advise but wants to send lots of hugs for having given us very junior Xeloda ladies such hope and inspiration.
Nina
Hi Marilyn
So sorry to hear the news. I worked on Faslodex when I was working at AZ, I didn’t know then how important it would be for a lovely cheeky friend. I really hope it works for you.
Had a CT scan yesterday and I’ll find out next Wed if I’m going to Israel in March. I think I’ve got to now and stick a prayer for you that Western Wall…lol
Sending you and D love xxx
I’m doing well thanks Marilyn - recent CT and MRI showing stable desease. When are you starting new regime? Keep yor pecker up, lots of love and big warm hugs xx
Thanks Nina & Sue, and good to hear about “stable”, Julie - keeping pecker as up as possible - starting Faslodex (both cheeks) on Tuesday.
Sue, will e-mail. you - maybe get together before you go to Israel?
xxxx
Hi Marilyn, just been thinking about you! TAKE CARE, stay warm, keep eating those greens…hope the Faslodex is not too ouch! xx
Hey B - just posted on BBBs - sending love to you too (and thermal underwear) xxx
Will catch up Marilyn. x 
HI Marilf,
Have only seen your post today. I have been wondering how you are getting on. When I was first dx with secondaries in Nov 2011 you gave me support which I was very grateful for. I have been stable since first with Tamoxifen then with the new Afinitor and Aromasin.
I am sorry you have had some progression but I’m sure something else will serve you well and I hope this is the Faslodex.
Take care . Sheila xx
Hi Marilyn
i am afraid I can’t help with the meningeal mets either but I had a great response to Faslodex, it kept my bone secondaries in check for just over 5 years so hoping it will do the same for you. After many injections I found the most comfy position to be was stood bent over the end of the couch, not very elegant but effective!
Good Luck
Smartie x
Hi Sheila & Smartie - good to hear from you both! Couldn’t have Faslodex, as my platelets are far too low now - onc thinks cancer has moved into my bone marrow too. So I’m on Megace - yes, a very old hormonal, but it might do something, in addition to givine me a bit more apetite, which is what it’s mainly used for these days.
I had some sudden numbness in my lip/chin (probably tumour pressing on dental nerve) - onc suggested trying dexamethasome (steroid) to see if that would shift it. Sadly, not only didn’t that work, it also played havoc with my blood glucose (I have Type 2 diabetes) and potassium, landing me in hospital for a few days. Home now, and aiming to get as “normal” as possible, given the situation.
This isn’t easy.
xxx
Hi Marilyn ,sorry to hear about your recent progression , and hope that they can get you stable again very soon. My sister has been fighting bone and liver mets and things seem tobe on the move again for her . She also has a numb chin which has recently got worse. She now feels like she has got a thick lip and Bitting into apples ect is a problem . Her teeth have been sensitive at times but we think that was due to the chemo , halaven . Her tumor markers have started to go up , she feels really bloated and she is waiting for scans. She has also started with pain in her sinus’s which could also be from something pressing on the trigeminal nerve. My sister had a head ct scan and jaw X-rays when this first started but they were clear. They are going to do another ct ? I asked for an MRI of her head .the oncologist has mentioned her meninges and I believe this is hard to diagnose. . Marilyn do you have any other symptoms . I am hopping that all you ladies get stable for a long time again very soon .xxx
Hi Flo12
I’m really sorry to hear about your sister’s progression - sounds a lot like mine, although I haven’t been on any chemo for several months. But “fat lip” and trying to chew nice fruit isn’t easy.
I don’t actually feel I have any obvious symptoms of the meningeal mets, but not sure what they’d be - certainly, I can feel some new bony lumps in my forehead (but these aren’t painful), and then there’s whatever is giving me numb lip/chin. At this stage, I’m more concerned about cancer in my bone marrow - no biopsy, but blood tests seem to indicate that’s what’s happening.
Hope your sister’s onc is able to propose some treatment to help her with everything going on!
Marilyn xx
Hi Marilyn
I’ve just been diagnosed with meningeal mets and am waiting to hear what my treatment plan will be. After reading this thread I just wondered how you had managed with our treatment.
Joanne
Hi Ingrid
I’m due to see onc tomorrow so will hopefully know more, but like you say I’m in a dark place right now and scared I won’t see Christmas. I’m under 40 with a young daughter and worry about the repercussions for her. I only finished 6 cycles of taxotere in May so am always worried how quickly this has developed.