Brain Mets Sisters
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Cynsister the intrathecal chemo can be given with a lumbar punture but is more often through an Ommaya port. I know ther are ladies here who have received the chemo through the Ommaya port with success so you should do a search for Ommaya port. I think they might be able to help you.
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This animation explains how the ommaya reservoir works. I hope it helps!
http://www.atlantabrainandspine.com/subject.php?pn=animation-ommaya
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Thank you for your replies besyfriend, reesie and mctho. Cyn is getting her chemo through lp tomorrow or saturday. We've got a plan to get talk to her onc, we've found an old friend of hers on facebook who didnt know how sick she was and she's gonna visit tonight. Cyn says we are interfering cows and she's glad. She even had a laugh about having them pop some magarita in with the chemo. Another new normal almost accepted. So by monday we should lnow if its had any effect and if cyn is able or willing to do anymore. We've cried such a lot today but at least we haven't wasted time talking about treatments and tests. She said do you know what they were looking for and what they wanna do? I told her i did and understood what it involved. She wanted to know if we were happy with whatever she decided and we made a pact that we will hold hands all the way. So we wait and we send ever good thought we can muster to help her through the treatment and whatever comes after. She said 'say hi to those feisty girls from me' so..HI
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Cyn
if truth in hearts that perish
could move the powers on high
i think the love i bear you
would make you not to die
Sure, sure if steadfast meaning
if single thought could save
the world might end tomorrow
and you'd not see the grave
this long and sure set liking
this boundless will to please
Oh you should live forever
if there were strength in these
but now when all is idle
to this lost heart be kind
for to a town you journey
where friends are ill to find x0 -
beautiful....
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dear cynsister, glad to know things are starting to settle in and there is a plan....
yes i am in the UK..found this forum very useful and informative, all the girls here are really so supportive..
sincere prayers for sister's quick recovery and best wishes for your family..xx
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Hi all x I was pointed here by a couple of girls and I'm glad that I've found it... I started xeloda almost 3 weeks ago and was noticing headaches, but put it as a chemo side effect. Last week had to go to ER because of awful head pain behind my right eye, couldn't stop throwing up and had an MRI. 1 met which is 3 cm and then 5 littler lesions scattered throughout my brain. We're going ahead with wbr but do not know much about it yet as we have an appointment with the radiation oncologist this week... oncologist said radiation was a better route after talking with a neurosurgeon. The headaches are better with steroids now but sleep is so restless. Really I'm shattered after these new mets... last year I told my husband if I ever had breast cancer in brain I'd focus on quality of life over quantity , but I'm bitter and want both.. I want to be able to move forward but I'm caught up in things. Anyway I am glad I've found this and thanks to you all for being here
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Sorry, Anna, you had to join our group. However, like me, I'm sure you will get information and find support to help with your journey! I had WBR in March. I'm doing well and taking it a day at a time. I also take boswellia, blue green algae, coQ-10, and a host of other supplements along with my Xeloda and Tykerb. Is it helping? Maybe? Maybe not? Anyway, WELCOME!
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Hi there sisters, I'm not sure what's wrong with me. I woke up last Wed at 5AM with terrible headache. My onc sent me to have a MRI done on Thu. Could barely make it to the clinic, thank God for my DH, he was with me. I got a SDH (subdural hematoma). My onc told me to find a neurosurgeon right away, and find out my options. I'm scheduled for surgery on Monday. The surgeon wants to drain the fluid and check the pathology. The MRI did not show any lesions. Now the headache has subsided, and I'm wondering if I still should have the surgery. I need some advise. I'm really confused right now.
Thank you for your help,
Helmie0 -
From what I read on subdural hematoma, it seems to be cause by some type of head injury not necessarily cancer-related. Depending on the size of it will dictate if you should have surgery. I'm sorry I don't know much about them except what I read on line. Wishing you the best!
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Anna11 -- it's infuriating, I know. Let yourself be mad. WBR isn't that bad...sounds so much worse than it is. Some annoying side effects that I'm almost past and I'm six weeks out. Intrathecal chemo is next for me. Feel free to email me if you want.Andyes the steroids, for me, are worse than any part of it -- the dx, the rads, any part. But they will wean you off as your WBR proceeds.
MCTHO -- Listen to the docs on whether to proceed? I'm sure you hate the idea of more surgery but they know.
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MCTHO - I've been using this site for years since there's so much on it but haven't ever made a username and posted until now. Glad to hear you are doing well then and thank you for the welcome, wishing the best to you ! x
pq2 - It sure is upsetting - I really don't know much about wbr besides what I've picked up from google. Glad it's not chemo but it's also something new so who knows what's coming with it? For as much as I don't know about wbr I know less about intrathecal - really just the idea - but I do wish you best of luck with it, when are you beginning that?
Anna x
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Hi Anna
I am sorry to hear that you have brain mets too. I was diagnosed about 3 weeks ago and to say I was devastated and very scared is an understatement! But once treatment was underway I felt a lot more positive and just wanted to zap all the little buggers! I too was told WBR was the option for me as I had 4 or 5, (the onc said 5, but only showed me 4! )
I have had 9 out of my 10 treatments - Yay I finish Tomorrow! So far I have been side effect free! A little tired, but more lacking energy than wanting to sleep! I have had no headaches, but my scalp feels very tender and tingly - My hair is beginning to fall out a little and my forehead is quite pink. My face has not been treated, so I will keep eyebrows and lashes, which will be so important to me! The proceedure is so quick, the mask seems to be getting tighter each time, but I am not in it for more than a couple of minutes. If you have any questions please ask, one bit of advice - DON'T google WBR - you will freak, my Dr said that as mine were spotted on a scan and weren't symptomatic, I was to stay positive and this treatment CAN work well!
Good Luck with the WBR
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Brain mets sisters -- finished WBR six weeks ago and this week get the port inserted in my brain for chemo that starts next week. Have to say WBR SEs have subsided -- I can hear, rubbery legs mostly gone and aside from no appetite and nausea I am doing fine! So onward to DepoCyt chemo. Anyway had this? Would love to hear about SEs (energy, etc).
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pq2,
Finished WBR two weeks ago and have lost a third of my hearing (you give me hope that it will come back!), my neck goes in spasm frequently and sets up a whole load of nervy tingling and pain, rubber legs come and go, good days and not so good ones. On third chemo treatment, so hard to tell if nasty taste in mouth and not wanting to eat is from chemo or WBR but I am pleased that your SEs have gone away as I was feeling a bit low about not being able to hear properly, so thank you for posting!
Good luck with the chemo - let us know how that goes,
Barbara
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I think the chemo can cause rubber legs too. My sister has fallen a couple of times but no other side effects other than being very tired, yet. She had her treatment last friday. Hope you guys get over the se's soon much love x
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Hi Everybody! Hope everyone is hanging tight today. pq2 you asked if we knew of anyone who had the ommaya reservoir. amlg1, I believe, had one. Perhaps you can send her a message.0
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Hello jintski
Glad getting the treatment underway changed your mindset some, I've had that happen before, hoping again once I do start some treatment for these! As of right now I want information more than anything, I know some things of course but not as much as I'm comfortable with.
Since you wrote you were finishing tomorrow yesterday... Congrats on finishing!! And so glad to hear about the side effects (or lack thereof) especially eyebrows and eyelashes. I'll admit, I've touched on google... read an account that was far less than plesant and quit out of it, don't want a worse case scenario in my head. Good luck with what's next for you x anna
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Ladies,
Are you on steroids? This can cause muscle wasting, especially in the legs. I also read to talk to your doc about decongestants for the hearing. I will be starting ever soon as well. Y'all keep me informed!!!0 -
Yeh, cyn has dex infused day before the lp chemo. I hope thats whats made her so wobbly. She sees her onc in about 2 minutes time so i'm waiting with bated breath. If there is any helpful info or suggestions i'll let you know. Hope your days are comfortable and warm x
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Hi, just wanted to let you know that cyns falls do seem to be related to legs giving out rather than passing out ( and i told her maybe down to steroids). Great news is that her pain is better, in fact! She said her joints didn't hurt. Its made such s difference that she's havong another treatment next week and going onto zometa ( i need to go and read about that 1). Best wishes to all of you x
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Dx one year ago with Stage IV breast cancer with mets to lymph nodes and liver. Did chemo and Herceptin until mid-May. Been doing Herceptin only every 3wks ever since. Just had scan yesterday showing mets to brain. Have radiation consult appt tomorrow. What is the WBR everyone mentions and does anyone know about gamma knife or other options for me with Her2-neu?
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mommydoxie,
They will do gamma knife (radiostatic surgery) where the radiation is precisely aimed at specific mets but they will only do this if the number of mets is small (under five, maybe?). I had 20 small mets and WBR (whole brain radiation) is then their only radiation choice available because there are too many to be treated the other way. When you speak to your radiologist, do ask about possible side effects (not everyone reacts in the same way) and ask for a full explanation why they have chosen a particular treatment. My radiologist is a great guy, positive and friendly and always willing to answer or explain something - hope you have a good relationship with yours as well.
Let us know how you get on,
Barbara
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Hi Mommydoxie
I too had WBR - just finished this Tuesday! Like Barbara my 'spots' are too small for targeted rads like gamma or cyberknife and my liver mets are very small and scattered all over the liver! So I guess my cancer just like to disperse rather than make solid tumours, because of this the onc, said there were possibly more 'unseen ' on the scan, so he wanted to zap the whole brain! I read up on WBR and scared myself, then came on here and was reassured! - Hopefully we will be able to help! I was terrified until my treatment was started, then I felt more in control and just wanted them to get on and zap them all away.
So far I have been SE free, no head pains or tiredness! I have lost my hair again :0( but I know that these could happen later!
Good luck with sorting out your treatment.
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I had a single brain met which I removed with surgery (not radioaurgery). Now I am going to follow up with whole brain radiation therapy (WBRT) to help reduce the risk of recurrence in the brain. I will start that this month. After that I will have chemo, most like to include zoleda. I am currently on herceptin weekly and tykerb daily for my HER2 status.
Look up gamma knife or cyber knife for your options on targeted radioaurgery or SRS. Those are options if traditional surgery is not available. It is less traumatic, but I liked the fact that I no longer have any tumor.
I was diagnosed in 9/2010 and since then have had a recurrence and then the metastasis to the brain. Started as triple negative and now HER2+.0 -
Thank you for the responses. I saw the radiation oncologist today. I am not a candidate for gamma knife...too many overall spots, fortunatley most of which are small. So I am to start WBR next week. I, too, did research online about WBR and scared myself, but feel much more reassured after meeting with the doctor and reading your posts here. There are actually less SE with the radiation than the steroid I have to take along with radiation to reduce swelling. I feel better and am ready to start this next phase of fighting this nasty beast! Thanks to everyone for all of your support.
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What have been y'alls side effects of steroids? I am tapering off them after my surgery and don't really want to restart for radiation. I have a huge moon face, bloating, wt gain, acne, flushed, night sweats, blurry vision, headaches, muscle weakness and agitation! I think I would rather have brain swelling than these d@mn side effects!!!
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Hi Survivor2Be,
They have weaned me down to a quarter of a tablet (1mg) each morning and next week I can stop altogether - believe me, there is life after steroids and a much more peaceful one! My face has been losing the 'giant baked bean' look (mine was also orange from the RT...) very slowly - I believe none of this happens quickly from what I've read. Certainly all the horrible effects of the steroids have already gone - the little bit I am taking now doesn't affect me at all and I feel so much more ME - I was like an alien before. I have read, however, that it is not water retention in the face; it is actually fat deposits and so it can take months for the face to recover its old look - I think we need to be patient and happy that we feel better!
Best wishes,
Barbara
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Hi all,
I'm afraid I was a bit naughty and didn't take my steroids. I was prescribed 2 a day (sorry can't remember dosage!) and I protested to the original oncologist, he said I had to take them to reduce swelling. I didn't take any that week leading up to starting WBR. When I met with the head oncologist at the planning session, I protested about steroids again, he said thaey would help with the pain due to swelling! , But I hadn't had any symptoms with mine, as they were discovered on a scan. He said to start with one and if I had any pain to have the other and if I had no pain I could stop. I took one after the first treatment (at 9am) and I had a sleepless night...I really need my sleep. So I didn't take any again. During the course of the treatment I had no head pain at all, so I'm afraid I didn't bother. Oh dear Barbara - giant baked bean isn't a good look! Mine is more like a peeled prawn look, as my forehead is still bright pink!
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Hi Jintski,
I also had no symptoms from the brain mets but had a 'hotspot' on the spine that needed the steroids to support it when I had my op and throughout RT. You were lucky to get away with it! I am today a bit slimmer-faced, my colour is pretty normal and that has happened quite quickly. I am hopeful of further improvement every day.
Barbara
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