Brain Mets Sisters
Comments
-
my doc told me I couldn't shave my head once I'd started radio as scalp would be too sensitive. Wish he had told me that beforehand as I hated it falling out. 6 months later, and it is now growing back - about half an inch all over. Oddly, last time it grew back after chemo, it was mainly white - much darker this time around. Eyelashes and eyebrows also returned
0 -
Kelly! Thank you again for the quick response. I appreciate your friendship. I appreciate this community and forum so much. I read posts all the time to get strength, info and courage from every woman on here.
Thank you for the info about your journey with the hair loss. I don't even care I'm losing it again. It's just that instead of it going in garbage, I'd like to try and donate it. I've let it grow since last donation I did and I think it could help someone. Just want to have enough time to get all the things done before treatment really kicks in. I have a cat a dog a bunny and two kids aged 13 1/2 and 12. I live alone with them in a garden apartment complex. Luckily the couple who moved in below us ..the husband is a med student training in neurology! There is a Hopsital across the street from my complex, but I don't go there for treatment. I did the first time my cancer was diagnosed but when it returned so aggressively I went to NYC. Anyhow..the good news is..the neighbors are aware of my condition and the kids being here with me alone at night..so I think it will be ok. They know they can go downstairs and knock or call his phone for immediate support and of course 911 which will disbatch an ambulance from hospital across street. I think that should suffice being "alone" during treatment t with kids at home. God let's pray it won't go there like yours didn't Kelly. As far as walking the dog...just how unsteady do you feel after treatment? Is it safe to walk alone? I will get a cane for sure. All my fears come from the unknown. I didn't have these fears while I got radiation to my breast or my bones. But the brain is our epicenter! So many questions. I start the journey tomorrow. I will ask the dr all my questions and see how accurate she is. I will be here to help any other woman going through whole brain radiation and am thankful to you who have paved the road and are now helping me. Kelly. I wish you continued positive response and more sleepful nights ahead! Keep you posted on how things go! And be well and keep me posted on how you are recovering.((hugs))
Dana
0 -
bosco19,
Thank you for your info! I didn't even think to remember how sensitive the skin gets to treatment! That is a good point. I don't want to wait Until it falls out in climps again and then NOT be able to shave it off completely. So thanks for the heads up. I will make sure it's all off before that.
I'm not sure mine will grow back after..because I'm starting IV Taxol indefinitely right after. So the bald life will be mine for the future! But hey..there's always a wig or tons of soft scarves.
Thanks again for your reply & congrats for making it through
Dana. ((Hugs))
0 -
delirium pie,
Hi! Thank you for your info as well. I am happy to have a time frame to know. I didn't want to be touching my hair all the time checking if it was falling out. I did that the first time it fell out. Then went and shaved it off completely to just avoid the drama. It's traumatic. Not as traumatic as losing our life obviously! But the whole treatment and mental anguish and physical symptoms we have to deal with ONTOP of our hair falling out in clumps is a little much to take in all at once. So yes. Is if just hair? Yes. Is it traumatic to go through all those things at the same time and add on hair loss. YES. It's ok to vent. It's ok to miss our hair. I wish you continued health and positivity moving forward in your days past brain radiation.
Can't wait to be there right with ya! Waiting for it to fall out is nothing compared to waiting to see the new growth and know it's a symbol of moving forward and triumph.
((Hugs))
Dana
0 -
hi Dana
My hair grew on Taxol. Maybe yours will too.
Had my simulation for cyber knife too. Hopefully will get to start fractions this week.
0 -
Hi dana_27 and everyone. I completed 10 whole brain radiation treatments on Dec 31st. I am still exhausted and a bit slow and shaky but my radiation oncologist thinks I am doing well and that my side effects are to be expected. Picked up some kind of bug on and have been sleeping almost 24/7 since Jan 15. Have had gastrointestinal problems and fever too. Dr says to treat like a flu and told me when to get to the ER if needed. temperature has been normal now for 24+ hours. I have had some rice porridge today and it has stayed with me for 6+ hours now so I will try some more bland food today. I have lost about 6 kilos (13 pounds) since I started the brain brain radiation despite getting 2500+ calories and 120+ grams of protein a day (for my weight and frame I should get 1800 calories and 80 grams of protein). So needless to say I am worried about wasting/cachexia. The nurse was alarmed but the doctor wasn't. Hopefully I will get through this all.
0 -
Hi Keldel and everyone. I'm glad you've finished your wbr, I finished on the 5th of Jan with followup on the 29th. Were you on steriods at all during rads? I was and boy I ate everything n site. I sure hope your not dealing with cachexia. I'm using a walker/wheelchair to get around the house, right sided weakness. Hooefully the new scans will allow me to be a candidate for gamma or stereostatic. Kind of scary.
0 -
Is anyone familiar with high grade, triple negative brain mets treatments? I hear everyone doing different meds and chemo's. My MDs don't offer anything but regular mri, surgery and rads. wondering if I/they are missing something? Trying to decide if I will do another surgery and rads on new growth. Thoughts anyone?0 -
Dana_27,
So sorry to hear what you are going through. Here in the SF Bay Area we have a wonderful group for younger women diagnosed with MBC. You have to have been 45 or younger when originally diagnosed. One of our members recently moved to New Jersey and she is has a 5-year old son and is recently separated from her partner. If you are interested, PM me and I'll introduce you to each other. I know she misses the support she had here in SF.
Hugs, Susan
0 -
Also, for those who are going through WBR or just finished recently, my last MRI showed a huge improvement! I originally had 12+ brain tumors with the largest at 2.2cm. In my last MRI you can only see one left! It's the one that was originally 2cms and it has shrunken considerably. Looks like a shriveled little sausage and I doubt it is active. I am six months out from WBR. I have two other brain mets friends here who had WBR and also saw their brain mets disappear completely. One actually had leptomeningeal brain mets which used to be considered the worst kind of brain met. Just today she found out her brain is completely clear!
I was fatigued by WBR and I lost almost 30 pounds and all my hair but I was able to go to modern dance classes and do Iyengar yoga through my treatments and since then. Three months after treatment I was back to my old self. I am a huge fan of WBR. I too worried so much before I started treatments but it has been the best decision I ever made.
Hugs, Susan
0 -
Hi Susanin SF - That is great to hear. I am battling some kind of flu or bug for the last 6 days but my brain function is returning to almost normal, still abit slow and I am getting some activity. in like walking my dog.
InThisForReal - I am on Decradron. Started on Dec 2 2 x 4mg daily, just reduced to 2 x 2mg daily today.
Kelly
0 -
Since early December, I've had one problem after another. I had a port put early December, which developed a clot around the catheter in the juggler vein. Around the same time, I developed shingles. Dec. 18th I had an emergency procedure to remove the port and catheter. My neck was so swollen that I could not turn my head, or swallow easily. I was in a lot of pain! I was admitted to the hospital for 3 days on hepren and antibiotics. Then two weeks of shots in the tummy. I reacted to the blood thinning medicine so I am having to go completely on natural blood thinning meds. I noticed during this stressful time that the top of my head hurt, and felt pressure. Slight blurrier vision. I blamed it on the clot. I mentioned it to the nurse a few days ago. She had me walk...looking for balance problems, and checked my eyes. She wants me to and MRI for my brain! They suspect another brain tumor. The doctor wants me back on steroids. I don't want to be on them unless they know for sure it is a brain tumor. Could it be nothing more than the blood clot or skull mets? How do they know. Right now, I feel like Job.
0 -
So I have been stable for 2 years after receiving gamma knife radiation to two leasions in my brain. AFter my routine monitoring MRI on Thursday, I found out that one of my old tumor beds has begun to grow. The previous 3 month MRI had show the possiblity that it was beginning to grow again but eeryone agreed that we chould just watch it and scan again in 3 months. So we did and now it has been decided that they need to take it out. I am starting the process of all the tests necessary to prep for brain surgery. This will require me to stop taking my chemotherapy (xeloda and tykerb) and I am a bit frightened as to what this will do with cancer which had been stable in my liver. You all haver been through so much more that I get strength from you. I am digesting the whle bain surery thing as it is a bit more scary than gamma knife for me. AS far as brain surgery is concerned, it is in an accessible part of my left frontal lobe.so all the doctors are saying it is the best possible scenerio. They call i the unimpotant part of my brain. I laugh because although that may be true, I kinda feel like the whoe thing is important. I also have 4 kids under the age of 12 so the prospect of not being able to drive for a hile is very ovwerwhelming.
thank you for being here.
0 -
hugs leftfoot.
0 -
Hi Kelly & everyone!
I hope you are getting better with each day from this dibilitating bug you've caught. Of all the times to catch something! I wish you a speedy recovery and am proud you have completed all 10 WBRT's!!! Thank God it's behind you now, and you can focus on rebuilding your strength and weight and coordination all back now. I also am in steroids. Taking Dexamethasone and eating everything in site, developed an oral side effect in my mouth from the high dose. In a medicated rinse. So it's hard to eat despite the extreme hunger I feel. I only completed my 4th treatment today despite starting a while ago. I had a bump in the road which ended me in the hospital in NYC for a week! Since my cancer in my body hasn't been treated with chemo since before Christmas, it has been getting aggressive. After my 3rd WBR one night I began to feel SO MUCH PAIN in my upper right shoulder chest area...it was so bad no pain med worked, tears, and vomiting from the intense pain....had to go to critical care...they ran some tests and after two days realized I had an extreme pericardial effusion. Had to have my chest cut open to drain fluid and a chest tube drain put in for a few days to continue external draining of fluid. Then found out I was the owner of two pulmonary embolisms as a result if the situation. I am now injecting myself w Lovenoc 2x daily to keep blood thin. Drs said once I finish WBR, and can get back on IV chemo (Taxol) the fluid should resolve and cancer will start back down. I have hope. I just have to get through 6 more WBR. Snow blizzard here in east coast now will be slowing me down this week! Last week hospital stay....trying to push through.
Praying for stamina, praying for strength, and praying to finish without any more bumps in the road.
(((Hugs)))) to all my strong sisters out here who read and respond and support each other in this battle that we must bare!
Much love to you all.
Dana Marie
0 -
leftfootforward,
Hi...I want you to know that I think you are a brave, amazing mother and woman! You will get through this surgery like a champ, and I fully believe they will get this back under control again after you get through this surgery ahead. Your children will be so proud of how strong their mom is. I also have kids only 2 and 13 & 12 are the ages...not being able to drive is an issue but one that is fixable even if it had to come to calling a taxi service. Hopefully you have family, friends, neighbors that can help for a while. That's what it's all about. This is the time to ask for help. I wish you the best & will be thinking and praying for you and the kids.
Thank a god it's operable...but you tell those Dr's, that ALL of your brain is "important" and if they are so sure it's not important...tell them to surgically remove the same part in THEIR HEADS. 😀 sheesh. Sometimes they could use a refresher class on how to speak to patients properly. It's obvious they meant it in a positive way...just could be a little more compassionate when talking with someone about losing a piece of themselves in an OR. Even if the piece is a "faulty" piece...it's still OURS.
((Hugs))) and strength my new friend..
Be strong and power on like you've been doing thus far!!!! Xoxoxo
Dana Marie
0 -
hindsfeet,
I'm sorry you are going through such a difficult time! We all can relate here and are with you. Best advice I can give is..get the MRI, and just be calm until results. EASIER SAID THAN DONE I KNOW...but there's no other way. All the info you desperately need is held up inside that report after. Hope for the best but prepare for the alternative.
Praying it's the less of the two evils for your sake. If not...then we push forward. That's what we do. Have hope and keep fighting back!
((Hugs))) let us know how your doing. And I hope you start to feel better soon from the port ordeal.
Dana Marie
0 -
Susan,
Thank you so much for this info and positivity! It warms my heart to know that your results were so AMAZING! I know the road to get there is tough...but getting there....AAAHHHH! 😀
I have 6 left! Hair just started clumping out while washing today. Will deal with that as soon as the blizzard is out iof town and I can get to the wig/scarf store in town.
That's the least of my concerns. I am worried only about brain function & fatigue and swelling.
Hair?!! NOPE!
Thanks again and I will get back to your private message about meeting up with your friend who also travels into NY for treatment. I need support from other survivors now more than ever.
((Hugs))
Dana Marie
0 -
deliriumPie,
Hope so! 🙏❤️
That would be an unexpected suprise.
((Hugs))
Dana Marie
0 -
waiting to go for my 2nd CyberKnife treatment. Got delayed by yet another week due to landing in hospital with pancreatitis and gallstones for a week. Still not sure pancreas is really clear but I had to get out to get CyberKnife. I may end up back there. It has now been over 6 weeks since I needed to have CYberKnife ASAP. Gotta love insurance and drs vacations. Don't worry. It's just my brain...
Anyhow, I have been on te steroids so long that my knees are shot and my leg muscles. I get more wobbly by the hour. I'm taking a low dose this time too. Not like for WBR. But I guess it builds over time from what I can tell. I want to start tapering down right away. Don't know if they will let me. I can hardly walk for being so shaky and I can't step onto my porch. Rambling now sorry. Good news Susan. Your posts are always so inspiring. Hope your hanging in there leftfoot. How's it going Dana?
0 -
What were your cost for Cyber Knife procedures? Mine is outrageous. Shock. And to think I might have to do it again!
0 -
no bill yet
0 -
has anyone tried prembrolizumab (Keytruda)
0 -
Leftfoot - I just wanted to add my well wishes for your surgery. I had a similar situation where they treated a lesion with radiation, but it came back so I had surgery to remove it. The surgery was scary, but I have to say it ended up being easier than I thought...just like all the crap we go through, somehow you find a way to get through it.
I don't often post on this thread, but wanted to give a quick update. I've had brain mets for nearly 3 years now. I've had several rounds of cyberknife and gamma knife, plus one surgery. I had a scan this week that showed 5 new spots, but they are so small we are just going to watch/wait.
Take care, gals. Hope the New Year is off to a good start for you all.
0 -
I fell on my way in to the building for my last cyber treatment. Both knees just went. Busted my face and knee. Starting to feel sore in a few other places now. Brain is so scary.
0 -
Hi delirium pie--hang in there. Love and hugs!
0 -
It's been so long since I've been on the boards, it's been a hectic time.
Finished wbr same day as you Keldel, am now off the cortisone and will not have any more treatment. My onc says he gives me 6 to 7 months (& that was beginning of Dec) so it's palliative care now - if I have that little time I'm not doing anything that makes me feel bad. In the last 2.5 years I've had 4 different chemos & 2 lots of rads, I reckon I've given it a good go, but it's enough of that now. Both lung & brain mets are numerous and spread thru both lungs & brain. Who knows how long the brain mets have been there - the biggest tumor is 2.5cm over an inch) in the cerebellum, hopefully it's shrunk a bit after rads.
They reckon optimum efficacy is about 10 days after rads, so maybe this is as good as it gets.
Although everything is slightly better, am still dizzy, get off balance and forgetful (sometimes. I forget what I'm saying in the middle of a sentence) walk into things, some nausea & lots of headaches & my vision is worse. I'm not even going to mention the fatigue!!
But I get up every morning & get dressed, even if I just lie down after. Try to shower each day too - that's a mission! Also I'm coughing more.
So I've moved up country to Johannesburg to live with my sister. So both sisters came to me at the coast where I lived & packed everything up. Had to find a new home for my dogs too. It was really hard - leaving my friends, dogs, the sea etc. and yet I was finding it tough living on my own and I knew the time would come when I wasn't coping alone.
So I get to meet the Hospice nurse today & we'll see what she has to say. I'm sure the stress of moving etc has not helped any!
It's nice to be back on the boards with women who really understand what I'm experiencing!
0 -
Carolben- hugs to you.
0 -
Carol, there are other chemo drugs you have not tried. You have responded to chemo before. I know how old you are, so I know you are not old! You never know... Your immune system may just rev up and make you feel good enough to give it another try!
Hugs and prayers for you, dear friend.
Brenda
0 -
Caroliben, your post touched me. I believe you still have fight and life. I have numerous lung mets, bone, spine, liver and brain mets. I was miserable after radiation because I was so tired, weak and could eat for 3 to 5 weeks. I lost a lot of weight. At times you want to die. It is horrible being miserable.
I've heard of a few people with stage iv who were given but a few months to live if that and they took Rick Simpson oil' cannabis oil. They recovered. If you give up on conventional then consider for quality of life at least alternative. And to add, I have use this oil for a little more than a week. After a few nights my wheezing is gone and I am breathing easier. No pain.
I am stage iv wide spread breast cancer and I have already out live my prognosis and standing strong.
(((hugs)))
0
