Brain Mets Sisters
Comments
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Kaption, the person that I know has LM and is fairly active on this thread is Agness. She has been dealing with it for quite a while. Not sure of anyone else active on this thread. There is another thread titled "Lepro Mets" as well. I know it is misspelled but mods did not fix it. It is not super active. I choose to believe that is because people are treated and some just move back into life.
Glad to hear they are done, congrats again. Lots of rest and protein when tired. I would not imagine you should have the fatigue for too long being done in only one place versus WBR. Hope this is true for you too. Keep us posted and may the Xeloda also reach the brain as well.
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Thanks, Mara!
I'm actually starting to feel a little better! Only one nap yesterday.
I'll look for the other thread too.
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Congrats on your stability Pagej. I hope the next scan shows shrinkage!!
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hi kaption,
I'm here too.. trying to figure out what I'm doing wrong, bc I sent off a reply yesterday I thought.
I'v had 5WBR Rads and I have the starting of LM, rather CSF diffusion... I had a quite a bit of Brain swelling afterwords that left me with right sided weakness and expressive aphasia..,a good dose of steroids seems to fixed it..except for the finer detail.
Ok, I'm glad we could meet up here!
The LM seems scary but you do what you have to do.. I am Her2+ and therefor have switched over to T-DM1... with other options to follow!
Have a great day, today is day two for me feeling better so I'm looking forward to what the day brings!
Hugs
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Thank you JojoTO!
So much to learn and figure out. This is so much harder than bone only. All the support means so much!
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thanks Goodie, you've always been inspirational to me.
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anyone take Avastin for necrosis and if so what was the outcome
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Hi
I am due to start THP as soon as all scans are completed. I have a mass in my chest.
Today my new onco has ordered a brain scan because I have a persistent headache and weak, tingly right leg.
I know these together are suspicious. Would appreciate any comments.
I am on anticoagulant therapy and had a twinge in my lower back which caused some jarring nerve pain but was under the impression that sciatica would be the left leg only whereas this is my right leg, constant numb, tingly feeling and the headache isn't shifting with paracetamol.
I am crying a lot and very anxious
Thanks in advance if you can help
Liz
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No experience with headache or tingly leg but do want to send virtual hugs your way. Anytime the brain is involved, it seems even more frigtening. The fact that the headache will NOT go away is more worrisome to me but of course, you need scans to know for sure. You will get answers and go from there.
Personal note, headache and leg issues were NOT my experience when DX with my met in the summer. It is very individual depending on the location you are dealing with and if you have multiple lesions.
All I can say is that once you know for sure, it can definitely be treated without too much downtime. Keep us posted and for now, stay away from survival rates until you know for sure there is not another cause. No point adding even more stress to yourself.
Again, just want to send my support your way.
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Thank you mara
I am feeling very unwell tonight so I think I will have no option other than the ER tomorrow. Even an urgent scan could be 2 weeks and then it will have to be read by a radiographer and discussed in a multi disciplinary meeting. I need some relief now. Hoping there is something they can do to ease my pain.
I am becoming more and more resigned to my fate as this goes on. I should be feeling optimistic because a recent bone scan was clear but then these symptoms have developed. I kind of just want to be numb for a while. As it stands I don't feel well enough to start the chemo.
So difficult when there are many symptoms to figure out. I thank you deeply for your kindness and definitely won't Google. Too rung out to do that.
Liz x
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I hope they get your pain under control. Let me know if you have any other questions.
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Thank you. I will go to the ER tomorrow and see what they say.
Head a little better but leg feels strange and I'm kind of weak, achy generally.
Will let you know how I get on. Amazing support- thanks again
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jackboo09- I would go to ER immediately I had a mini stroke that was how they found my brain met, presented as tingling on left side. I had no headaches at all however. Very good idea to get it checked just in case. I thought it was late onset neuropathy.
Weakness is def a sign of stroke and cancer patients are at higher risk of stroke in general due to thicker blood. Please get checked. You could have a stroke and then feel better an hour later. I did
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Hi Pagej
Thanks for your post and concern. The headache is presenting very much as a sinus issue as either side of my nose is throbbing and even my teeth and gums. I am prone to this but I'm not saying I've discounted it by any means.
I am on blood thinners and did wonder if it was SE of this medication?
The leg is intermittent. I have bouts of mild sciatica and some disc degeneration. Had a spell on back last week but who knows.
This morning I rang out of hours ER referral but didn't get very far. They prescribed anti sickness which has since gone but here only a GP can order a scan. You cannot have a fast, same day scan.
I will see how it is on Monday morning. A brain scan hS been ordered but it could be up to ten days. A second option would be to pay for a private scan in London.
All this extra worry before in due to start chemo.
I am proactive but I'm not sure what else I can do. Nothing available at weekends and its holiday time here too.
Liz
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ok interesting just concerned because just went through all this within the last year. I've been told not to hesitate when there is tingling numbness oo weakness especially now I have a known brain tumor that's being a stinker and shrinking slowly instead of disappearing asap.
That's too bad you can't get a scan sooner but try not to worry and relax.
I'm not sure about blood thinners or sciatica pain so no help there
Take care and look forward to hearing good news from you in 10 days0 -
Hi
Yes I am concerned too so will keep pushing for a scan assp.
I will definitely report back and really welcome your input. I'm still very worried.
Sorry to hear about your tumour and hope you have some more positive news soon.
Best wishes
Liz x
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Hello,
Just want to be supportive of you.. let you know I'm thinking about you.
I'v been out of commission with brain swelling but it's getting under control now..steroids..you can't live with them you can't live without them.sigh.
But wanting to let you know that I had stroke symptoms that brought me to the emerg..and it was easily taken care of with steroids.
Peace and hope,
Jo
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JojoTO- did you have more than one stroke , just the one and/ or was your tumor surgically removed? Just curious haven't met too many others who had strokes. My symptoms went away with steroids as well
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hi,
I must clarify... swelling and stroke look alike.. but I had no blockages or hemorrhage..that is why the symptoms got better with steroids..
I had SRS done on four and then a fifth lesion in May -June 2106..
Now i'v just had 5WBR in February actually ... and I'm just getting over the brain swelling I spoke of.. they were able to get an urgent MRI and decipher that it was not progression of my CNS disfusion / LM disease.
Peace and hope,
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I hear you. Similar in some ways to me. I had brain swelling from tumor and small infarction (ischemic stroke) last April- ER MRI found 2cm solitary met. steroids resolved my face droop in 5 days. And I eventually bounced back. I worry about it happening again as I've said before on here it's not shrinking very fast. It's inoperable. We may try Avastin soon. I've heard of some good results with it for necrosis and tumor death..
I've met a few others who had stroke, but it's mostly seizures. If any had stroke stories please PM or post here.
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Hi again
I posted recently about headache and leg weakness concerns.
The headaches have definitely eased and exhibited as sinus throbbing either side of my nose. I think possibly sinus/ allergy related.
The leg is terrifying me. It feels like sciatic nerve pinch with nerve tingly feeling of weakness rather than any pain.
Had sudden back twinge with immediate nerve pain in lower back ten days ago. It jarred in my mum's rickety car! This is when the numb right leg began in earnest.
I have a bad history of sciatica with repeated episodes. Just had a clear bone scan, however I'm thinking this could be brain related?
I can walk/ position the leg and at times it aches a little in lower back. Is this kind of jelly leg a first sign of BM?
Should I / could I try any exercise or other meds while I await the scan. This could be another week from now and I don't know what to do.
Did anyone else exhibit with leg issues?
If anyone can shed any light on this I'd be grateful, thanks Pageji I have certainly not dismissed your advice but my docs can't/ won't do an immediate scan.
Liz x
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Jackboo, are you experiencing dizziness or have an unsteady gait? If not, and if you are steady on your feet, I would continue walking to keep loose. Epsom salt baths would be good. Does the pain go away with painkillers? If so, keep doing what works.
Common issues with brain lesions would include dizziness, vertigo and balance issues. BUT pain and tingly leg can also be the result of a pinched nerve, back issues etc.
I am sorry that you are having to wait so long. If it helps, my personal opinion is the leg issues do NOT sound like brain mets. Also, oncs typically would not hesitate to scan, the fact you are waiting may be hopeful. It may be they are not worried or feel this emergency. Keep hope until they say different.
I am still hopeful your scans are clear. Keep walking, deep breaths and the scan will be done so you know for sure.
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Hi Mara
It is very good of you to post- thank you.
So far NO dizziness, unsteady gait or balance issues and resting leg results in an easing of the jelly leg feeling. I am on my bed now. However I know also that it is important to keep moving too. Thanks for confirming the movement advice, I know I have been less active with lengthy waits at clinics!!!
Just been looking again at headache issues and it seems there is no clear pattern. I had intense throbbing pain either side of nose and that has eased a lot but I still feel some general pressure, no wonder though, one day after a pounding nose/ face.
In the UK even an urgent scan can take 2 weeks, my lovely BC nurse was superb this afternoon. She took half an hour to talk to me and was then heading off to CT to try and speed them up- bless her and you ( and many others on this forum) for being there for me at this time.
Love and appreci
Liz x
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I understand about the waiting though. It is tough to do. I would try NOT to second guess symptoms for now until you know for sure. Unless you start feeling dizzy or suddenly weak, then take yourself to ER.
Good luck.
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anyone had an awake Craniotomy? if so details? post op recovery etc
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Hi Jmo06, I had a craniotomy in February 2015 to remove a single met. I was in the hospital for 3 days post-op. I didn't require any physical therapy or supportive services upon discharge, but my BFF did stay with me for 3 days to make sure I was back on my feet. She continued to come out to my house to help with chores, cooking, etc for another week or so.
Overall I thought the recovery from the craniotomy was easier than recovery from my mastectomy. I had very little post-op pain and it was managed with OTC pain pills only within a week of my surgery. I was released back to work at 4 months post op (I had a very physical job at the time or I probably could have gone back sooner).
Please feel free to message me with any questions!
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I apologize, I missed that you were asking about an awake craniotomy. I did not have one of those.
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txmom,
Thanks for sending the article about how they may have discovered why Her2+ women have such a high incidence of brain mets. Gives me hope that they will be able to figure out a targeted therapy eventually.
Hugs, Susan
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Hi ladies,
TMs keep on climbing since Oct. I was changed to Fas in Feb because of progression other than bone (lymph nodes and suspicious lung nodules). I've been having constant headaches on the left side and tongue on left side is swollen, slurred speech. I had a CT scan of brain, neck and chest and waiting for results. Do these symptoms seem familiar to you?
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Linda, sorry you find yourself here. Certainly is scary when dealing with a possible brain met. I understand your concern given the headache and slurred speech/swollen tongue. Personally, I did not have these symptoms but I was interested in seeing that you have had to change your treatment drug. I checked the symptoms that could be related to slurred speech/swollen tongue and was interested to see medication SE listed as a possible cause. I have also heard of pinched nerves causing similar issues. I know the other scary suspects stroke, brain mets etc are there but the medication change could certainly mess with you too. I hope the issue is benign.
The trouble with these pesky brain mets are that the symptoms will vary greatly person to person. Depends a lot on where the mets are, how many mets there are and if they have caused any brain swelling. I am glad you got scanned and am hoping as I said earlier that you do not show mets. I know you will still need to know the issue but hope one of the more scary ones can be taken off the table for you. Below is the link to the page where I looked up possible causes of swollen tongue/slurred speech.
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