Brain Mets Sisters
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KT, my fingers are crossed for you too. I want to hear you say you feel better too. Makes it easier to feel you made the right choice when the Se's fade back and you can feel the benefit of a given treatement, be it rads or chemo.
Today I managed walking around the grocery store and did my first 20 min brisk walk around the neighbourhood. No problems with it and it felt good. Since the only thing I can control is my activity level, decided might do me some good to move since I am able to.
Have to admit am glad to be off the steroid. I still live in a black pit of fear about late effects but I do expect that to fade with time. I am cutting myself some slack since it has only been 2 months since stage IV DX of the met I feared most. WBR was always my most feared treatment. I am telling myself not to worry about later stage effects anyway because you rarely hear good news stories of WBR. Internet will have more bad results than good. Can't borrow trouble anyway. If I cannot move beyond my fear soon, will have to get some sort of counselling for it since I am not interested waiting every day for something bad to happen to me. I still hold onto SusaninSF and some of the other brain only metsters. I don't recall seeing any other brain only metsters on this site with WBR so maybe I am unique unless someone knows of another person here.
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Well done with the walking
I saw the ROs registrar. She was nice. She's booked me in for a brain & spine MRI tomorrow to check out the se's I'm experiencing (my MO seemed to think they were radiation se's, but maybe not?).
Anyway- I guess tomorrow will tell.
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I am glad that they are checking the SE's to see if there is another cause KT. It is best not to guess when dealing with the brain of course. When I heard you say shaky and wobbly, was worried about it and like we both know, testing is the only way for sure. The only way I would have thought would be from the WBR would be if you had brain swelling symptoms similar to that pre WBR.
Glad you are in such good hands that are not completely writing off your symptoms to WBR and willing to check further into other possible causes.
All my best to you and I hope they stop the SE's for you.
Myself, still feel rough but going to exercise more today. Hair is coming out in earnest now so pulled out my collection of scarves etc for my head. It is a messy business but I know I cannot shave my head now. At least my hair was fairly short. Would be messier if it was long hair.
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Guys, I am behind on following up on all posts. Sorry, but it's been one thing after another. Before I get a chance to get updated on all there is, i have a question.
Onco called frantic that on last week's BT for Dani, they checked her tyroid (bcs she was loosing weight), but she was loosing weight, because she had Rads to the sacrum and to the cerebellum, and she had nausea, vomiting and not eating before procedure as to not have nausea. Anyway, the test came back TSH normal, but T4 above normal.
Did anyone have this experience? She never had problems w the tryroid before. Do you think something is going on in the Pituitary? Dani did not wanna run to another doctor, Onco wanted her to go to an Endocrinologist. She told them she wanted to redo the test and make sure it's not a fluke. Does anyone know how urgent is something like this?
Another thing to think about.
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Not sure what this means, looking it up I found this article at the below link. I would obviously agree to visit the endocrinologist since at this stage Dani has so many things she is dealing. While I understand not wanting another doctor visit with so many she is dealing with now, they are the best to say if serious. Momatt, I still think about you and Dani often. Hopefully, some of the mess and mystery can be untangled for you soon. Here is the link below. Did not read entirely through but does mention TSH and T4.
http://www.endocrineweb.com/conditions/thyroid/thyroid-gland-function
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Pagej so happy for you. Enjoy!
Goodie yeeh, that's wonderful! Everybody likes a good story.
KT so sorry of all you are going through, but like Mara said glad that you have a good team with you. Let us know what the results are.
Mara I hear you, and I think your fears is everyone's fear. You are living it. To be honest just to have someone, sometimes a professional that is accustomed to Stage IV would be nice. Any surgery is traumatic. And going through what you went, for sure. Baby steps, baby steps.
Josi they usually will tell you, that it's been there for a while. Now I guess they have to decide what is your plan. And did you get all the path back yet? So happy for you, that you have this nice bunch of good people around you.
Mara thanks for the input re: tyroid, it's so insane that I honestly don't know what to think. It came from the left field. We'll wait till next week to see what happens. they think it could be Hypertyroidism. Don't know anything about it. Just hope it's not something like the Pituitary pushing on something!
Meanwhile I put a call in to RO, I would like to ask her if surgery is really the only way out. In Dani's case they are minimizing the SE's, she thinks she will be up and around after surgery.So far she has been on Ixempra for 3 wks, she does not think any lesions got smaller.
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Gamma Knife done to 3 lesions last week. Largest one 10mm.
Continue with IT Herceptin now.
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Thanks for the update freakzilla. Speedy recovery from it.
For myself, just shaved my head today. Was going to take too long for my hair to fall/be pulled out so spent over an hour cutting then shaving my head. Feels much better and the scalp already feels better. It was almost like the left over hair was pulling my scalp and it was already annoyed by the whole brain radiation. Happy it is gone.
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Has anyone take Avistan for brain mets? I had wbrt in January but my mets started to pop back up this summer. I started s trial for Avistan and brain mets (not exclusively for bc patients). Was wondering if anyone else had been aware of this drug cancer in the brain.
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Hi Jahaage- I also recently started Avastin, however not through a clinical trail. I was able to get it approved through my insurance (although it took a while). I get it every 3 weeks, so it lines up with my Herceptin schedule. Right now, I have only had one infusion of it and my due for my second one on Oct 7th.
I have necrosis due to gamma knife radiation to 7 spots in February and the Docs feel that the Avastin will help the healing process. Although they all say that the best thing for healing is just time.
I actually have my next brain MRI scheduled for this Wednesday morning, so I am hoping for some improvement!
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Momatt, I hope Dani's thyroid gets sorted soon. Speedy recovery, Freakzilla.
I hope avastin deals to the mets for you, Jahaage.
I hope you do see some improvement on the MRI, Becs!
Must feel better without the hair, Mara. I didn't shave mine, but it looks a bit silly- only 10% left, it's about 4inches long, but feels better than that horrible falling out stage.
I ended up having another MRI - they want to do rads to my upper spine now as there is evidence of LM disease there. 4-5 treatments apparently. I'm not looking forward to it- yet more steroids & se's no doubt. I hope my throat/oesophagus isn't affected.
I am really tired of being sore tho. I guess this will set me back further in the tiredness department tho. I would so like to have more energy & feel well.... Has anyone got past the exhaustion & come out the other side???
It's scary stuff alright. I so want to be well for my family, it's hardest for them....
Go well all
kt
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KT sorry to hear about the additional mets that were found, I am glad that you did not just allow them to be written off as WBR symptoms. I am glad they will be dealt with but am sorry for any additional SE's. I truly hope that when these mets are zapped, they will at least give you some improvement to some of the symptoms you are having.
I do want to encourage you with my progress. Though I am extemely tired, I have been off steroids for over a week. My sleep at night has massively improved which does aid in my recovery from the WBR. I also am able to avoid naps, they interfere with my night time sleep. I am able to eat normally. I would not call myself particularly hungry, but it does not stop me from eating as I normally would which I believe is helpful. I expect there will be continued fatigue but I am trying to ward it off with some exercise.
Becs, I wish you the best on the MRI as well. Hope all other metsters are doing OK that we have not heard from. Been thinking about Bad and agness as well, motherflush and others.
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ladies,
As I am still very new I have little to offer in terms of advice but I wish for all of you / us an easing of side effects at a minimum and hopefully clear scans and aggressive (but spot on) doctors. I got the results of my MRI And PET scan and I have one solitary bone met on my spine. MRI was clear / consistent with recent surgery. My doc is hopeful lupron with arimidex will put that bone met into remission. But still waiting to see what Mass General neuro onc will say. And ridiculously still waiting on my met's pathology. If I have changed to her2+ then that will change everything but if I remain erpr + and her2- then likely hormonals. And certainly some sort of radiation to the tumor bed. I Have my meeting with the radiation onc on the same day - October 11th. It's weird to be on no treatment since obviously tamoxifen failed me and I've been off it since surgery. I also plan on going to a naturopath shortly - it so helpful the first time around - anyone else going? This has been shocking and mostly that's where I am right now but scared for my daughter whose almost five. Is it too much to hope for 13 years to get her through high school? I'm a single mom....
Josee
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josgirl, of course it's not too much to hope for. After all, I think hope is necessary in order for us to complete some of these treatments we have to endure. It is hard to say which way we will go but overall survival for Stage IV people is increasing the number of years. I say yes to hope until there is a reason not to.
I am scared to death myself though perhaps for slightly different reasons. I am not afraid of how long I may have but instead, worry about the whole brain radiation damaging my brain. I do tell myself that it was the best and only option offered to me. I cannot simply get a second opinion since in Canada. Health care system really does not work that way for me. Since WBR was the only option, I took it since my RO did tell me to expect to go into a coma and die sooner as opposed to later. I try to hold onto hope now that I will not have a steady decline of mental status. Trying to simply go day by day.
I will hold onto hope as long as I can, I think each of us should as well. Life is unpredictable and we don't know the course of our own disease. I prefer it that way too. I also like to think I don't have an expiry date. I keep prognosis out of my conversations with medical people. I am still waiting for a followup appointment with my MO since Herceptin did not fail me, I want to stay on it before the brain met decides to send mets elsewhere in my body. Hopefully will have an appointment soon.
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Mara,
Thanks that makes me feel better. I understand your concerns very well. Our brain is who we are and it's scary to think of something messing with our sense of self. But everyone is different so your experience may very well be better as the technology is getting better too. And from what little research papers out there it seems the WBR symptoms are 2-3 months and then they get much better. What I love about this site is how brave people are to share their experiences and so many have had great results from WBR. I learn so much and gain so much hope from this site
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Hi kt. Sorry to hear your having a hard time with se's. I'm sure when they zap the new mets you will feel better.I have been really tired after wbr. My onc is not going to do scan until november.(not too happy she is leaving it that long) She says do everything in one go. However I have decided to try oxygen therapy. I start on monday. 3 days a week. We have a centre close to where i live and I know several pepole that have had good results. It works well with brain radiation and chemo. Enhances effects of both and helps with se's.
Mommall hope they get Dani sorted soon. Josgirl we need hope, its what gets us through.
Wishing you all good scan results and pain free days.
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So excited to share some great news with all of you! I just met with my radiologist and the MRI that I had this morning, showed all 8 lesions have shrunk since my last scan in August! And there is no more swelling or pressure, so I can taper off the steroids, which I am beyond excited about. I am so sensitive them that I have gained over 10 pounds and have a serious case of chipmunk cheeks!
In addition, I had a pet-scan 2 weeks ago which showed no signs of active disease from the neck down.
This is seriously the best position I have been in (aka least amount of cancer in my body) since my diagnosis 2,5 years ago. Hopefully I can stay here for a while!
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yay Becs! That is truly good news. I am also battling a little weight gain from all of this. Things are looking up
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I am happy to see good news on this site, I am still unsure if I belong here but now 2 neuro-oncologists say I do so here I am. I am a complete outlier. Had some odd symptoms last Fall, tested for a variety of things all negative. Some Carpel Tunnel symptoms led me to a neurologist who ordered a cervical spine MRI. That was clean but told to have a brain MRI asap. The finding was a small lesion in my brain stem, horrible location but the debates began, it did not present as cancer but given my history could not be ruled out, but due to the location could not be biopsied. Decision by tumor board was treat conservatively, 5 rounds low dose SRT. Completed that early Feb was told I would be good to go by April. Well now it is Oct and I am left with severe peripheral neuropathy, basically my right side is lagging badly. So since Jan I have had 5 brain MRIs, 2 cervical spine, 1 spine, 1 thoracic spine, 1 CT and 1 PET CT as well as numerous blood panels/tumor marker tests. Everything clean. All anyone can come up with is radiation necrosis. Started Avastin late July, my Sept MRI looked great but I am still not right, still having balance issues and my right arm is dead. Anyway my neuro-onc said to add Xeloda, Tykerb doen't work, my MO says absolutely not. Went to a large NYC teaaching hospital, she said no Xeloda but add Tykerb. I am totally fine with calling it a met and throwing something at it but what? Any ideas? My initial BC was strongly Her2 positive and I had a pCR from HTCx6. NYC also has access to clinical trials and immunotherapies but she felt for what is left of one small spot I do not need to go that route. To sum 2 neuro-oncs say treat as cancer, differ on drugs, MO says not pumping toxic drugs into someone just in case. Me, I am not afraid of SEs, I want this taken care of I want to live and have some QOL improvement.
Thank you to anyone who would be willing to share experience, offer an opinion.
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congrats Becs!!! so happy for you!!! celebrate the amazing reports like crazy - you deserve it! hope the good news keeps coming for you & all of us.
been off the boards & am not very caught up. so sorry to see so many new names - ug, so very sorry... sending hugs.
wishing the best for all - easing of and/or better mgmt of SEs, successful treatments, & the best qol possible.
sounds like everyone's doing a great job of hanging-in there - this board is such an amazing resource - massive thanks to all!
as for me, a previously gamma knifed spot (9/2015) reappeared on routine brain mri in July - radio necrosis or malignancy - shape suggested tumor. repeated scan 4wks later & big surprise, it hadn't grown! celebrated & set next mri for 8wks - finding out how it looks this week. fingers crossed - I know I'm in a good place, but the uncertainty is so difficult.....
hope you can enjoy some of these gorgeous autumn days wherever you are! smiles, hugs & best wishes to all!
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Congrats Becs, always happy to hear good news.
Spicy, good to meet you. I am starting to understand the waiting is hard being a new metster myself.
Rmanmom- sorry about your issues. Sucks they can't biopsy the location to know for sure if it is necrosis or tumour. If you are covered, I can totally understand wanting the drugs to try to alleviate those symptoms. Have they ever mentioned doing hypobaric oxygen therapy, that is supposed to assist in healing necrosis from what I've heard. Best of luck, let us know.
Myself, still beyone exhausted but only finished WBR sept 23 so I know I have a long way to go. Happy to be off steroids since Monday of last week. Do not appear to have swelling issues so am able to sleep well. I tend to sleep more than 12 hours. Only at night, don't do naps since they make me feel more exhausted. I know I must be patient for my energy to come back since am aware can take weeks. No congitive problems yet. Still hope for decent results like SusaninSF.
Hope everyone else is OK, thinking about you kt and others.
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Hi all.
Congrats on your good news Becs
Hi Rmanmom, I hope you get a treatment you're happy with.
Here's hoping for continued good results spicypetunia
I'm glad you're sleeping mara, it makes a huge difference!
I had my last upper spine rad today, hooray!!! I get a few days off the 3 hour round trip (med onc assess on Monday). So now to recover & eventually wean off the steroids again (can't wait, I hate Dex) I'm feeling ok atm, just a bit tired & shaky.
Take care all, kt
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Glad to hear from you KT and hope this latest round of rads improves your symptoms.
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A few pages back someone asked what state I live in, I supposed they asked due in that I had 30 brain tumors zapped by via Gamma Knife, and I'm doing great! No side effects or brain tumors! I don't have another brain scan until late December. I live in Oregon, but I do know other states radiation oncologist are known to take out several or more brain tumors through Gamma Knife, which is said to be the gold standard.
I also learned last time when I saw my radiation oncologist that sometimes Gamma Knife, especially in the brain stem, as one of mine were, can put a hole in the BBB, which allows chemo or other meds into the brain. Another doctor too mentioned that it is possible with SS and Gamma Knife could allow meds to penetrate the brain, especially Kadcyla.
He also said it seems that those who stress less during brain surgeries have less side effects and better results. Just saying what he said...no stats on it, but stress can be a factor to the success of brain surgeries.
Thus far, I'm doing well, and recent PET scan shows stable disease in bone, liver, lungs, and nodes. Most have shrunk and many are gone. I'm doing well, except for neuropathy in feet/legs.
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Mara love your inspirations piece. Yep, no one knows what tom will bring. I just found out about a fam friend, not even 60 yet, major stroke. So… I do feel that most health professionals are lookg with pity eyes at Dani. Then I come here, and read about all these ppl doing wonderful things w their lives, and just moving along. I wanna tell all of the docs, hey u don't know what you r talking about. Like she would have a contagious disease or something. They are looking at numbers. The Ins. Co. is the worse, they are always saying, u know mets...blah blah…I wanna tell them U have no idea what you are talking about. And they do come up w new stuff.
Becs this news is just beyond! So happy for you. Enjoy!!
Spicy wish you the best on the results. It's maddening waiting for the results.
KCfeel well soon.You went through so much.
Hindsfeet first I wanna tell you how glad I am for you. But when Dani went to Neuro, they were saying that if they did Gamma already, like twice they would not do again. And also it was extremely localized.And you had 30 done with Gamma? How could thre be such a disparity on opinions.
Rmanmon one could imagine how you feel, Dani has one lesion in the area of the cerebellum that they don't wanna go to, just watching for now, it's in a too sensitive place. Nerve wrecking, that's for sure. So sorry you have to go through it. One of these docs should be able to help you!!RO did call back, and she tells me oh no, no surgery – hmm like really?? No one let us know. So weird that they did not synchronize what is it that they think it's best for D. And I could not reach her since then to arrange for her to come in asap. They are still wanting to wait and see if Ixempra will take care of it. So by some cheer higher force, we got an appointment for next wk to go to Neuro Onco to tell us which direction to go. Meanwhile, Dani says she feels new lesions.
I am curious, who is being watched by Neuro Onco also? Or just neurosurgeon, I am hoping this Neuro Onco will take her as a patient, and not do some political correct ways, as saying oh, if neurosurgeon saw you then you have to go to him, because I feel much more comfortable in having someone not directly influenced by "which" way to do a procedure.
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Momallthetime, I continue to keep Dani in my prayers and will continue to hope that her treatment team finds the right combo of meds to fight her progression. I'm seen by both a neuro onc and a neurosurgeon. My neurosurgeon referred me to my neuro onc after he performed the craniotomy. My neuro onc manages my brain MRIs and if any new lesions show he will treat those. I keep my neurosurgeon on my team because I'm not opposed to having any future lesions removed surgically.
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Hi all. I hope you're all doing mostly ok. I hope everyone's treatments are working.
Hey, total change of topic- and I know in the greater scheme of things it doesn't really matter.... But....
Has anyone been on dexamethasone for ages like me (since beginning of July)? I'm just starting to wean off yet again after my last rad treatments- my problem is the peach fuzz (thankfully blonde & fine) all around my mouth/chin area. It's getting longer(!) and I'm starting to find it quite embarrassing. Does it go away by itself once you're off the Dex or do you have to do something about it!!
I don't fancy shaving! Waxing sounds painful & delipitory creams are prob not a good idea when on chemo!!!
What a conundrum- any help or ideas welcome
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Oh kt, the gift that keeps on giving.
I did read up on dex and the extra facial hair is a side effect that should disappear after you stop taking them. Annoying that the thing that helps our brains and bodies not to swell too much have so many other annoying side effects. I hope it goes away soon once off your dex.
I confess that I am a shaver myself. Did not get hairs due to dex though have dealt with them on my chin for a few years. I don't pluck or wax because OUCH, but shaving is easy to do when washing my face. Sometimes will do twice a day if have stuff to do the whole day. I probably only have a few but it feels like a beard to me.
Hope you start to feel better after this latest rounds of rads. Hope they punched out any new mets or tumours!
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KT what a real problem. Doctor's should have this talk with patients and tell them that it exists, but hopefully Mara is right, and it will disappear soon. Did you guys ever watch Farrah Fawcett in "Between two women". It's a fantastic movie. And I never forgot the scene where her MIL asks her to shave her mustache, when she became ill. Aww, the whole story is just awesome. It's who we really are,everyday. I had a MIL and I could so relate. Towards the end, i was one of few that tended to her. So I knew all these nuances. Who would have thought that I'd be the only one at her bedside when she died.
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Hi Kt. I had the same problem. My onc says cream is ok to use. I used one for sesittive skin and it is only on for 3mins. Does the job and knly need to use it once a week. I have just finished with the dex and i must admit I am feeling better. Hope your se's are subsiding now.
Good news Bec. So happy for you.
Mommall sending healing vibes from our church members.
Wishing you all good results and pain free days.
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