Brain Mets Sisters
Comments
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Thanks Koda and Formy. My second mastectomy was only for prevention. I had a couple benign lumps so I said take "it" off. I only had chemo once and that was in 2009 when I was originally diagnosed. I will be starting chemo again after radiation treatments are over. I hear it will be a trial and error to see what works. My radiation Dr said she may not treat the neck mets so they can be monitored to see if chemo is working.
I had a bad day yesterday....I think we all have our days where it feels overwhelming. We pick ourselves back up and a new day brings new hope. Thanks so much for the kind words. :-).0 -
Dear Brainiacs
All going ok. 3 rads down 9 to go. I thought I would share a few thoughts.
When I joined this merry crew, I decided I needed to read all of the brain mets sisters posts, right from the start. Important to me. Took me a week but so worth it. I knew there would be ladies I would get attached to and lose. I also recalled so many posts in other threads mourning the loss of another special woman.
I am just reaching that threshold, after nearly a year on the boards, where the women we are losing are more than just names to me. I always understood the sentiments, but when I read about Apple's passing early this year, it surprised me the intensity of emotions felt by her sisters. Every woman is special, and we each relate specially to some people more than others.
But every now and then, I guess a true blue moon, you meet an Apple. Reading her posts I can see how enormous her loss was to everyone. Such a special person. Astounding. i wish i knew her.
Blessings to all of you who knew her, and thanks for letting me share my ponderings.
Much love
Angela0 -
Hello all Brain mets!
I had a crainotomy in FEb 2012 and then radiation- stereotactic radioation to my brain a year ago. I saw my surgeoen today. He was esctatic and puzzled. I let him know that I did jucing every day, and a vegan diet, additonally I used frankincense oil on my breasts. It reduced my water on the brain- I had to go of seroids by order of my rad onco. I found it- frankinsense on a MD website.
I have none left and also no recurrance of any brain mets! All clear for now check out some dietary approaches to help your case as i had no water on the brain, very little scarring, although I have lost my right hand and arm to the tumors descruction because the tumor was not diagnosed caught in time . It was not fair in that I am an artist and author --and really need those skills in my teaching. I am permantly disabled too. I lost some left lobe language skills. But I am here and I want to wish all of you blessing on your cancer joureny. Never give up hope! I wish you all courage and peace.
blessings,
Marcia m
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Way to hang in there, Angela. Hope the rads go quickly.
Happy for your results, Marcia.
Tomorrow I get an MRI 8 weeks since the last surprise, with new lesions and no more gamma knife offered. I asked them if we could watch them.
So, my favorite rads Onc will tell us the results, and as I said before , I declined WBR. So if there has not been a miracle of shrinkage, I hope that yesterday was my last chemo. We will go to FL on the 25th and I look forward to feeling alive for awhile!
Anyway, Ill share results. Not asking for wishes as it feels like time to stop working so hard at this crazy job we call stage 4 tx.
Hugs
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Good luck tomorrow, K-Lo. You seem to be in a good place. I'll be thinking of you. I just got back from a trip to San Diego and enjoyed family, sun, ocean, mountains, sealife, food, laughing, life in general. Several nights on the trip I had flying dreams, where I was soaring around like Superman. It really felt like I was unbound by earthly burdens and had no limits. Here's to a great time in Florida.
S.
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oh San Diego,,,, and oh what dream
Did you visitthe hanggliders beach> :-)
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Kathy,
I hope you get good results today. Please let us know how it goes. I wll be thinking about you.0 -
Dear Brainers,
Anticlimactic today. MRI showed growth in most of tumors but no edema and most are sub-centimeter. I got that from Rads Onc whereas the report was barely readable. Absolutely no measurements and the anatomical locations were all new words. Show-offs.
Rads Onc not a fan of "stopping" and she is so kind I just left with a two week plan. Off chemo next week, on vacation the following week. End of plan.
Tired, y'all. Don't even want to take Ritalin cause i'll be so tired when it wears off.
We live to tell more stories and plans, but no drama today.
Kathy
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Enjoy the time off, Kathy. Sorry the mets are still growing. Maybe there can be a new plan soon. (((Hugs)))
Speaking of ritalin, are people getting their blood counts done before asking for ritalin? I'm pretty sure ritalin wouldn't have been much help with my low hemoglobin, platelets and RBC.
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Hi Brain Cancer Sisters, I had brain surgery last tues and I am home now. Doc says he was able to take the bulk out of the cerebellum. So now I'm healing not sure how feel. I know I still have swelling and trying to taper the dexamethasone. Scalp incision up the back of my head. staples out next week then wbr x 13. Does all this look right to other brain cancer gals?
Thanks for all advice and encouragement.
Koda
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Koda, I didn't have the surgery but I did 10 WBR treatments. I hope you make a complete recovery.
(((Hugs)))
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Hello Brain Mets Sisters. I don't have mets in my brain, but I stop by frequently to see how you guys are doing. Hope your vacation is really great, Kathy. Just relax and enjoy.
I have been thinking about Chainsawz. From what I see on the board, she has not posted since January. Does anyone have any info on her? I admire her a lot. Will try sending her a PM. Thanks for any info you might be able to provide.0 -
Koda, I haven't had that type of surgery either, only gamma knife, so can't say. But if you're home healing and tapering off dex, it sounds like you're on the right path. Good luck! I hope you keep improving.
K-Lo, I'm sorry to hear the mets are growing, but no edema and their being subcentimeter sound good. Do you have symptoms?
I'll have a brain MRI in a month--my second follow-up since gamma knife in Oct. I haven't been thinking about it much because I've got liver lesions that are a bigger concern. I don't feel them, but of course those are what will probably get me. I've got extensive bone mets. Those are generally stable, but I have rib/back pain if the morphine wears off. And I now have a few lung mets. But the onc isn't too concerned about those either. I just had my second infusion of T-DM1 (Kadcyla now), so I'm hoping that works on the liver if nothing else.
I've been to the hang-glider port off of Torrey Pines Road a couple times. My brother works at a Scripps lab nearby so I've had lunch there with him when I've visited in the past. What a great spot. This time we only drove past. We walked the beach in Del Mar a couple times, went up to Solana Beach, visited La Jolla to see the seals, drove to Julian, went to Coronado and Old Town and Balboa Park, went to the Birch Aquarium when it rained. I came home without a dollar in my wallet, but the trip was worth every penny. We'll be eating catfood for months.
The Ritalin is keeping me going some days. I didn't take the second 5mg Fri or Sat this week and crashed hard in the evening.
LuvRVing, I don't know if my onc considered my blood counts before giving my Ritalin. My hemoglobin had been about 11 for a long time but this last week was at 13. Platelets go up and down but usually not under about 140,000. Can't remember the RBC. I think Ritalin is worth trying.
K-Lo, enjoy your chemo break and your vacation. Planning two weeks at a time is plenty!
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Wow, I slept until 1pm today and I feel great... thats probably nmore about Halaven. I decided to talk over the Vanderbilt thing with Palliative care since I have an appt on Wednesday.
Koda, bless your hreart. Brain surgery is overwhelming in my mind yet it is hopeful, isnt it to have it physically removed that irradiated?
RV, I had no idea Ritalin affects blood counts.
Surly, I know what you mean about thinking liver lesions are the thing/ But I just don't know anymore. The game has changed and changes before our eyes. I'm almost convinced that we pick the treatment side effects we want to escort us out...... make any sense? There are no end to the treatments offered. I am stunned by the distance one can go... its such a big choice.
K
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I got an interesting note regarding this trial which includes Her2 neg and pos:
NCT01679743 [view on www.clinicaltrials.gov] GRN1005 for Brain Metastases From Breast or Lung Cancer Currently we are having a drug supply issue. We think it will be worked out sometime at the end of May or June (but that could change). The trial is closed to accrual at this time, but keep us in mind in the Summer.
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Hugs to you Koda ((())). You got through the hardest part! I think brain radiation is nothing compared to brain surgery. I had 1/2 back of head radiated...10 treatments with no side effects. It was scary, but I soon realized there was no reason to be scared. I hopebthe 13 WBR will be easy compared to surgery. Best wishes on your treatments and wishing you speedy recovery from surgery. Take care.
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Koda,
I hope you keep improving. Good luck.
Surly,
I did not know you were in San Diego. Torrey pines is our favorite beach and is only 15 mins from home. My cancer center is in la jolla. I am ashamed to say that I have not been to the beach in months. I must make an effort and get out. I am glad you had a good time here.
Kathy,
This study looks interesting. It does require tumors greater than 1 CM so I am not sure if it would meet criteria. I will ask my neuro onc about it also. Good luck with second opinion.0 -
K-Lo, interesting thought about choosing what it is that we'll have escort us out. I'll think on that. You're right that there are so many treatments and options--and then there are snake oil salespeople to turn to next. I have always had it in my mind that you just burn through treatments until you run out of them and then start cleaning off your hard drive and throwing away socks and underwear, because no one wants those. But I also think I'll know when the time is right to stop. Maybe. I'd like to be in that place when I still have my faculties.
This is a little off topic, but I get a Pema Chodron quote e-mailed to me weekly, and this past week's quote was really great. It will annoy some people, I'm sure, but it rings true for me. Here it is:
ABANDON HOPE (AND FEAR)
Hope and fear is a feeling with two sides. As long as there’s one, there’s always the other. This is the root of our pain. In the world of hope and fear, we always have to change the channel, change the temperature, change the music, because something is getting uneasy, something is getting restless, something is beginning to hurt, and we keep looking for alternatives.
In a nontheistic state of mind, abandoning hope is an affirmation, the beginning of the beginning. You could even put “Abandon hope” on your refrigerator door instead of more conventional aspirations like “Every day in every way I’m getting better and better.”To me, if you feel like you are always hoping for a cure or hoping for some certain results, you're also living in fear--the fear that the cure isn't going to happen or you're not going to get the results you want. But if you surrender "hope" it is liberating. That's how I've been feeling (and how that flying dream felt). But people around me are always saying, "There's always reason to have hope" or "Don't give up hope." You could replace the word "hope" with "fear" and that is also what they're saying. "There is always reason to have fear." The reason I think this idea of "abandoning hope" would annoy people is that it sounds like giving up. And in this culture, if you give up hope or aren't positive, then you will be seen as causing your demise. But I'd rather not be holding my breath and living in fear until I die. I'd rather enjoy as much as I can.
Whoa! I got WAY off topic. And no doubt it's easy for me to spout this right now because aside from some fatigue and some mild aches and pains I'm feeling good. But for some reason it seemed relevant.
Formygirls, I now remember from a months-ago post that you're in San Diego. How about we switch homes for the winter months next year? The Torrey Pines beach is wonderful. We walked from there to Del Mar one time. I hear that if you walk far south from Torrey Pines you'll run into a nude beach--so says my nephew. I had to have blood drawn at a Scripps clinic while I was out there--off of Carmel Creek Road. ...Oh, have you ever gone to the Cineopolis in Del Mar?! The most decadent movie experience ever. The tix are about $20 and you sit in big leather chairs that recline nearly horizontally. Push a button and a waitress comes and you can order drinks or a meal or dessert. I can hardly stand to think about going to a plain old movie theater again.
Sorry for all the off-topic chatter. Feel free to block me!
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Hi to all you rockin' ladies!
I have a question for all of you regarding brain mets. As you can see from my signature, I'm a TNBC (stage IIb, grade 3, Ki-67 of 75%, 3.2cm, EGFR +2 tumor) survivor of 19 months and have been having some issues that I'd like to present to all of you and see what feedback comes!
On a PET in October, a follow-up sono in January & yet another PET in February based on the 1st PET & sono reports, there was one (now two as of Feb.) cervical neck nodes that are increasinng in size and the SUV values are 5.7 and 9.9 respectively. Now, I'm having bouts of debilitating headaches, nausea and bizarre dizziness that involves a "full feeling" in my head. Sometimes, I really don't feel sure on my feet, can't type (I'm typically an almost flawless typist) and can't find my words very well. At first, I wrote the latter off to chemo brain but it is undeniably different. I've had a couple of dizzy spells during which I had to grab whatever was near me or I was sure to hit the deck. I know no one is exactly the same but was wondering if you had any of this other stuff going on as well.
My Onc still hasn't biopsied the node(s) and now wants to wait until April and see if they're still there...& I'm frustrated as hell. I know - without a doubt - that something is wrong and am seriously considering switching doctors. I've already sent both PET scans and the sono report to another MO to review but there is nothing like "field experience" of other warrior sisters to learn from.
I'm not a paranoid or alarmist person by nature but feel this is getting just a bit ridiculous. My DH is so fed up with the delays that he's determined to just take me to the ER the next time I have an episode of any kind which, quite honestly, is almost daily now.
Waiting for your kind responses...
Blessings,
Michelle0 -
Michelle,
I think you should go to the ER and ask for a brain MRI. It could be migraines but they can rule out brain mets and then you can hopefully find what else is causing it. A brain MRI is much better than a PET for ruling out problems in the brain and it is best not too wait too long. Wish you good luck and good news. Your MO does not sound great. He should act faster. I hope it is migraines or something simple like that. Most headaches are not mets.0 -
"formygirls"-
Thank you for the quick response! I should have said that I've dealt with migraines throughout my life and these have been different. However, it was the onset of the neuro SX that had me bothered, along with the cervical nodes.
I totally agree with the fact that something should be ruled in/out faster. I've had a harder time questioning my MO due to the fact that she is so well-respected here in Dallas and I'm just the "layman" so-to-speak. However, I also think that it's the ones at the top of their field(s) who can tend to get a "God complex" and refuse to admit they may just have someone in front of them presenting with something they didn't see coming.
Thank you for your input! I really appreciate it - especially since y'all are all dealing with confirmed stage IV disease. Your taking the time to help me is valued more than you know.0 -
I would consult a radiation oncologist or a neurologist. Yes to the brain MRI, and your radiation oncologist may put you on decadron to reduce brain swelling, which will help reduce your symptoms. Your MO's hesitance to handle this immediately is rather inexcusable.
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Luv - it's funny you mention that. I actually have some dec left from chemo and as considering taking it for a few days to see if it eases anything.
I agree with the inexcusable part...as forgiving as I try to be.0 -
Surly,
Im worried. That I will like you too much. FMG and I agreed it might be better to not like each other so much.
But your post was refreshing and mind opening, esp:
The reason I think this idea of "abandoning hope" would annoy people is that it sounds like giving up. And in this culture, if you give up hope or aren't positive, then you will be seen as causing your demise. But I'd rather not be holding my breath and living in fear until I die. I'd rather enjoy as much as I can.
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Since you live in Dallas why don't you take all your scans to MD Anderson in Houston. You need a second set of eyes. The symptoms you describe is worrisome. You need a brain MRI....Stat!
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Tiger_Blood - girl, don't think that hasn't crossed my mind. It's just finding the break in schedule and being able to take the time off of work to do it! Not to mention I've got a senior getting ready to graduate and a junior being recruited for college football! I've barely got time to take an extra breath, much less spend a week in Houston for evals, tests, etc., as much as I'd love to! I'm trying I get some resolution here in Dallas as this is a medical research city like no other. Between Baylor, UT Southwestern, Methodist and all of the others, you wouldn't think it'd be that difficult, right? I'll get answers...I have no doubt. I just wanted to bounce this off of y'all and make sure I wasn't missing something and overreacting at all. I was starting to wonder!
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...& by the way, thank you to all of you who are letting me bounce this off of you for some feedback & input. I know y'all are already dealing with a stage IV diagnosis and at times, I feel like I'm just whining. God bless all of you!
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I just posted this to the "Calling all TNBC" thread but thought I'd keep the several of you I've been talking to informed as to what I found out.
Well, I followed a suggestion and went onto the Johns-Hopkins Q/A service and this was my response:
"Further evaluation and biopsy (if possible) should definitely be done. If this is recurrence, therapy should start now. Would recommend BRCA testing if not done already which could influence clinical trials for PARP inhibitors. I'd get a second opinion ASAP.
Consider an academic medical center breast center for breats medical oncologist with clinical trials. If we can help, call new pt referral office @ 410-955-8964."...and that was without even listing the symptoms I've been having - I just informed them of the nodes and their development/radiology reports since October.
I guess I need to push for a biopsy or find another doctor. No excuses for waiting now.
...to be continued.
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Wow, that's good, Miz, right? It always gives me a lift when a cancer specialist wants to help me. I hope this all goes well for you.
I have conflicting points of view coming in. You know I'm gonna pick the one I want! Palliative Care doc says avoid WBR until symptoms occur. She adjusts my sleep meds and is giving cymbalta for neuropathy (and of course it helps depression).
Love love love my Rads Onc but she wants to "fight for life" with all we have. Well, I'm really lucky to have these excellent people (mostly women, although the Palliative Care PA is a man, like from heaven).
My son is a saint, too, for tolerating my witchiness. Here's my son and his daughter.
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K-Lo, what a sweet photo! Is your son a chef? How old is that little snickerdoodle?
I'm not sure what I'd do with those conflicting points of view. But you're right to pick the one you want. You're the expert. Those perspectives are exactly what you'd expect. You'd never expect the palliative people to advise going at 'em guns blazing. And the RO would never say wait and see, just take more meds.
If you fear you'll like me too much, just stick around a little longer. I will certainly say something sooner than later that will cancel that out. ...But, seriously, I know what you mean. I feel like I'm playing with fire here sometimes. I'm drawn to people and their stories and I get pulled way down when they start to fade. I was dx 3 years ago but am still newish here but have seen too many dear people pass on. With so many new members joining the boards, I sometimes feel like we're all crowded together on a little ice floe that is melting too fast.
I pull back and don't engage sometimes, but I get a lot out of this place and a few friends I've made. It feels good. And to feel is wonderful.
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