Brain Mets Sisters
Comments
-
yes! I have some and use it for port access for my H&P infusions. I’ll have them show me where to put it. Great tip, thanks!
0 -
in February 2018 my cerebellum stopped working. I now have Acute Cerebellar Ataxia, something that isn’t well studied in adults or cancer patients.
As long as I keep breathing I won’t die - I haven’t given biomarkers of death yet.
My partner is amazing with the kids (age 7.5, 11). He has taken over the routine of meals.
Ann
0 -
Agnes’s- you are quite the spirit. Everything Cancer has thrown at your, you tackle. Thank you fir sharing your courage and strength.
I am glad you have help. Enjoy the sun today, as I’m pretty sure we are due formore rain tomorrow.
0 -
Agness sorry to hear this, really got nothing else
0 -
Ann,
So sorry to hear this. But as leftfootforward said, your spirit is amazing.
0 -
Ann, may I gently echo what everyone else has said. I am sorry to hear of your current issue.
0 -
Ann,
Thinking of you.
Much love,
Carrie
0 -
Mara, Very cool! Will have to ask my RO about that! I still have scars from the head screws.
Becs, You have been through so much. You should be able to do what feels right to you. How many new tumors do you have? Why can't they treat them with gamma knife? Big hugs to you. Wishing you the best.
Peaches, The hair loss could be stress but it could also be Alopecia which is an immune disorder. Hopefully, once you get your treatment plan in place, you will feel more in control and less stressful.
0 -
Illimae- I had one and it wasn’t bad. They had me lay still for two hours and then I had a 2 hour ride home. I was fortunate and didn’t get the headache. Sending you good mojo for the test and for upcoming treatments!
Ann- It’s comforting to have things in place for our children. Sending you ((hugs)) and cosmic healing. Wish we all had some superpowers to sendright about now. We care for you!
0 -
First time in a long time actually feel a bit normal, I'm 2.5 weeks after radiation and finally get to go down to 2mg of dex which is good I'm sick of shaking all the time, most of the symptoms I was having seem to be better minus my ear sounding like ocean all time, I'm almost afraid to say I'm feeling normal because I'm afraid to jynx it.
0 -
The ocean sound is definitely annoying by times. The further out you get, you will notice less of this.
I am going for my third of five SRS. Looking forward to it being over and moving on. No SE thus far and still able to be active. Only on 2mg of steroid daily, not finding too many sleep or eating issues. No GI issues or weight gain. Appetite pretty much the same.
0 -
I hate that ear-whooshing sound, too. I still get it....but then again I have 20+ brain mets that did not shrink as much as the RO hoped they would. Still get VERY dizzy at times, but I'm taking CBD to help a bit.
I'm on very low maintenance steroids to help with inflammation/swelling/headaches: 1.3 per day, so I'm not having sleep issues or the ravenous appetite.
Take care,
L
0 -
agness, I’m sorry the CAR T therapy hasn’t worked out as we all hoped, advancements can’t come quick enough
but I did read that the ataxia in many cases is temporary or can be reversed, is this possible in your situation, maybe?Happy to see everyone feeling good or better lately, may it last a nice long while 🙂
0 -
insurance denied my gamma knife treatment.
Appeal process here we go.
0 -
leftfoot, is insurance denying gamma specifically or any treatment for the brain mets, horrible that they would even question a doctors recommendation.
Iwrite, the spinal tap wasn’t as bad as I thought it would be, although I didn’t freak out a bit, crying, cussing, the whole bit but the staff was really nice about it.
0 -
Thanks Susan! No new tumors, just 5 progressing ones that were already “treated” via gamma knife and Avastin. I had a brain pet scan yesterday, as well as a regular one and CT. That way all the doctors know what’s going on systemically, so they can come up with the best treatment plan instead of piece meal. Now I’m just waiting to hear what it is while neuro, oncology, and radiology all consult..
0 -
Leftfoot - that's absolutely terrible insurance denied Gamma. Appeal the hell out of them!!!
illimae - glad to hear your spinal tap wasn't too bad.
I hope everyone has a restful weekend.
Carrie
0 -
Spinal tap results are in and the fluid is negative for cancer cells, yay! Now I just move on the Gamma again for the 4 new little spots. I’m not really thrilled about that but happy it wasn’t worse.
0 -
Hello warriors
Writing about my mom..feel so lost..hoping for good advice.
My mom has been battling cancer since 2014 IBR responded well to treatment..later mets to bone..responded well to treatment..around 2015/2016 Mets to brain this has been such a battle!! Had WBR ...targeted radiation several times!!!!! Has had 2 brain surgery..all the while has been given steroids here and there..last surgery in Aug found has necrosis mom was experiencing slight confusion treated with steroids..kept on long time developed atrophy in legs can't walk or stand..finally convinced parents for rehab..we have been here a week.. Mom doing so so with therapy, her confusion is now severe and I believe what is impacting therapy..
We see Dr on 25th but seems so far away..what should we ask about? Been reading thread sounds like some have chemotherapy for brain mets..however I was told chemo doesn't penetrate brain??
Help i don't like seeing my mom suffering..extreme confusion 😢😢😢
0 -
hi - how did you all discover the brain mets? did you have symptoms?
0 -
Oh, I definitely had symptoms: Eye flashes and auras, weird whooshing sounds and pounding in my ears, headaches, dizziness/unsteadiness, numbness on the left side of my mouth, and I started to slur words, etc.
Hope this helps...no, it's not fun at all.
L
0 -
jmo06, traditional chemo doesn’t cross the BBB (Blood Brain Barrier) but there are some that can, I just don’t know the names. Hopefully, the onc will have some treatment options.
Traceylou, I had no symptoms but I did have a headache that turned out to be unrelated.
0 -
Hello! Joining you here with first time brain mets. Mets to liver only for about 2.5 years, then found some in spine, now this. Starting WBR tomorrow as they are small but numerous. Any advice? Bummed to have to stall systemic treatment as liver tumors are so aggressive but what else to do? Must get this brain deal under control. My symptoms were massive headache in an instant, then vomiting and dizziness that just wouldn't stop til in ER with the good drugs and steroids.
0 -
Kaay, WBR will get you back in shape in no time.
How many sessions are you going to have?
I had ten, and it wasn't bad at all.
L
0 -
Sorry to hear Kaay... I did 10 wbr just a month ago, it really wasn't to bad, still going down on steroids that is the hardest this.
0 -
Thinking of you Kaay! Hoping the wbr is effective with minimal SEs!
Sending warm wishes to you all! Still staying in touch here and thinking of you often.
0 -
Oh Kaay, I’m sorry you have to join us here. Hugs and good thoughts for seas and successful treatment.
FYI traditional chemo can cross the bbb if it’s been interrupted by surgery and/or rads. We are hoping it will on the trial I’m on now which is a new Kadcyla like drug.
Symptoms of brain mets depend on the location. I had weird sensory symptoms and mild visual disturbances from the two big ones. No symptoms from the two little ones.
Speaking of the little ones, one finally disappeared off scans over a year after cyberknife. A few months later, another one popped up, my first new one in over two years. Got that zapped in February. Did it without steroids due to starting the trial. It sucked with headaches and major motor and balance issues but I’m back to normal again..
0 -
Whoooo, just caught up and read this whole thread!! What a wonderful place, you all have helped me so much already.
I decided to add a picture, I realized I remember people who have pictures better than those that don't
0 -
Note to anyone who's getting WBR, be sure to ask for Namenda/Memantine....it's an Alzheimer's drug that will help minimize any neurological deficits the WBR may cause. You titrate up on it, starting at 5 mgs/day and finally going up to 10 mgs in the am and 10 mgs at night. I was even able to take it while using my CBD tincture, I just had to make sure that I spaced the dosages about 3 to 4 hrs apart so there wouldn't be any drug interference going thru the liver pathways.
I was on it for about six months, and I didn't have any problems with SEs while on it, and I do believe it helped :>).
L
0
