Brain Mets Sisters
Comments
-
I forgot to mention that I get wigs of Paula Young.com. The pixie ones are usually more natural looking.
0 -
RO had me tapering the Dex starting last Fri. I was ok until today. Man, what a hit. I can hardly walk/move. My bowel problem is definitely caused by the steroids. I feel completely different. I don't want to jinx myself (I am very superstitious) but I feel I am getting over this. I am going slowly and carefully for now.
0 -
Jaycee, glad you notice a difference weaning of the Dex. I don't miss that stuff at all.
0 -
thank you Julie! Would you mind sharing where you bought yours?! Thank you!!
0 -
wow Mara, thank you for all this great info! I took notes of everything you mentioned! Just completed 2/5 cyber knife. Praying for the week to be over, anxiety is through the roof.
0 -
Roro you got this! Almost half way there.
I bought my wigs locally. The first one I ordered from a catalog and the second I found online and had my local wig shop order it. It just seemed easier in case I didn't like it.
Jaycee almost done! 5 to go?
Julie
0 -
a day I never dreamt I’d see. kerp fighting.
0 -
LFF, that is just wonderful. You inspired me to hope as well when I got started with the cancer so I am happy you got to see this.
0 -
thank you Julie! One more day and it’ll be over. I had an anxiety attack while laying on the table today. Praying the hair won’t go anywhere!
LFF, I just cried seeing your beautiful post! That’s all I can dream of. Actually taking my little boy to Disneyland for the first time when he turns 6 is my biggest dream at the moment. Hoping I can make it! Congratulations to you. What a beautiful photo and moment in your life!
0 -
OK, I have three more treatments. Fri, Mon and Tues. This will be the first week I did five. The first week had a holiday and the second week I was sick one day. I feel really proud of myself. The process has been really hard. I feel bad when I go to the RO center and I am very aggravated that they are always running behind. They come to me almost every day and tell me it will be 20 minutes longer. The treatments only take about 5-10 minutes but the whole process takes up to an hour or longer.
I'm starting to feel different. Food tastes weird. GI is iffy. I did make an executive decision to institute my own steroid taper. The RO had his nurse make a schedule but it conflicted with what we had already decided to do. I will adjust as I go. Not bad so far.
After, I don't know what happens. My biggest problem now is deciding what to do treatment-wise going forward. I put that on the back burner during WBR. That was a nice but short break. Just need to finish treatments. Can I have a longer break? Please.
0 -
Part of the food taste changes I experienced had to do with the steroids. Meat, fish, chicken and rice with veggies were usually fine. I found breads and peanut butter the most problematic with a definite metallic taste. I weaned myself of the steroids sooner, followed their schedule, just started it about 4 days early to get it out of my system. After a week or two with a lot of water and walking, I lost most of the water weight I gained and my taste buds went back to normal.
As far as taking a break where you are on no treatment to recoup from WBR, that is totally up to you. I can see wanting to build back up to a stronger position. I don't think any MO should expect that you would want to resume other treatments you may have been on. My feeling is a couple of extra weeks off everything like the steroid should help you sleep better and that will go a long way. Your appetite should improve some as well. Keep us posted on your progress. Don't let anyone tell you to hop on your treatments right after WBR if you need a rest.
0 -
Has anyone had brain mets return after wbr? If so what was the protocol? Cyber knife?
I had my treatment yesterday and just got the vibe from the Dr that I was halfway in the ground already. She said do you live alone. You are going to start needing help. What does that mean? She isn't my normal MO thank goodness. I just feel like ever since the brain mets were found the Dr's act like my fight is over. Looking for someone who has proved them wrong after wbr. I do have liver Mets too. Which is what I am more worried about.
0 -
I did have a couple of tiny mets appear in the same area my original 10 cm tumour was. It was not unexpected as part of the tumour was wrapped around a blood vessel. I was originally treated in 2016 and around easter 2018, when the tiny mets grew, I had the whole surgical bed retreated. So yes, you can treat an area of the brain twice. So if you get mets elsewhere in the brain, they could be radiated.
Don't let your MO make you feel you are on your last legs. Though it is prudent to make sure your wishes are known to family etc and possibly create a will, these are practical matters. If you are feeling well, go with that feeling. Look after what you need to but don't think of this as you are immediately going to die.
I would look into some sort of care in the home. Even if you set up a nurse check in. I had a nurse assigned to check on me and kept that up for 3 years until I finally decided I did not need it anymore. All they do is ask you about how you feel, take a blood pressure and leave. That might be worth it or look into a phone check in service.
0 -
Jjim- I didn’t have whole brain radiation but at this point I probably have. I’ve had I think 6 brain radiation treatments ( 4 gamma knife, 2 cyber). And have probably treated over 35 brain Mets. Don’t let them discourage you, I’ve been battling for 8 years and am still here.
0 -
Hello all - sending solidarity to everyone recovering from whole brain radiation right now. I am a bit over 4 weeks since finishing mine, and I restarted chemo (Taxol and Avastin) last Friday. I'm still up and down in terms of how much energy I have, it's now hard to tell of course what is the radiation and what is the chemo. But I'm still suffering radiation effects for sure. Tapering down the Dex slowly - gone from 6 to 3mg and go to 2mg tomorrow. I'm nervous to find out if brain mets symptoms will come back as I taper - so far they haven't - as I know I'll panic if I start to get the pressure headaches and dizziness again.
LeftFootForward - your update gave me so much hope! We can all be inspired by your experience
0 -
Thank you Mara and Leftfootforward!
Julie
0 -
LFF,
I haven't been on the boards for a bit and just saw your photo with your son. Congratulations! Really put a smile on my face. And you look fantastic! Love how your hair grew back.
High school graduation was such a big deal for me too. I didn't think I would make it. My son is now a year out of college and living in LA. My daughter is four years older so she has been living independently in LA as well. I know they still need me but I feel a sense of relief that they now have their own lives. I started going down every month to see my Chinese Traditional Medicine doctor and visit the kids.
You have made so many smart choices in your treatments. These choices have brought you this far and I believe you will see your other children grow up too.
Love and light, Susan
0 -
scan tomorrow sm. First one since my treatment on March. It’s going to be a long night.
0 -
LFF,
Wishing you the best tomorrow!
Julie
0 -
Good luck for your scan LFF! They never get easier
0 -
Best wishes on the scan, in your pocket to send healing thoughts.
0 -
Thinking of you, LFF!
0 -
no new lesions. Several have gone away. 20 or so show small growth ( mm) but RO not worried. Said it’s most likely because we are comparing a new scan to ones done several years ago and machines/ measurements can change by a bit over time. We will rescan inn3 months.
Thank you for being in my pocket.
0 -
LFF, “nothing new” is my favorite thing to hear, congrats 🎉.
0 -
LFF
That is awesome news!! Just in time for a relaxing weekend. What treatment are you on again?
CONGRATS!
Julie
0 -
Julie,
I am currently on Tukysa every dayand I get kadcyla every 3 weeks.0 -
LFF, glad to hear there nothing new for the scan.
I am wondering, only because we are the same HR/HER2 status, what are the side effects of the Tucksya and Kadcyla together. Asking because that may be something suggested for me in the future if I progress.
0 -
Mara- I think my biggest one has been weight loss due to lack of appetite and some GI upset. But overall I’d say it’s been a relatively tolerable combinatio
0 -
Thanks for the info LFF, may you keep going for as long as possible!
\
0 -
Just saying hello and that we are thinking of all of you!
0
