Brain Mets Sisters
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Seilien, I’ve heard that WBR and Xeloda can both be pretty tough, hopefully those who’ve had WBR can offer some info on the recovery time and balance issues. Has you neuro onc given you any expectations?
The not eating was scary for me too, I actually went to the ER twice for dehydration and continuous vomiting, the vomiting only resolved when I was able to eat real food, everything got better once I was able to drop the protonix med and quit drinking the boost shakes (the bubbles really messed with my stomach).
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That's awesome to hear LFF. Wow, your son is so tall. That is just great. Inspiring to me. I am on 5 years. Hoping for longer myself. Want to get to those once a year scans and Herceptin. I am at six months now.
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Seilen, I did not have any balance issues post WBR. My most prevalent issues were lack of appetite, extreme fatigue and a lot of depression going on since I was so scared I was going to die. For me it probably took a couple of months to start exercising again and getting some activity helped the fatigue and appetitie issues. Once I was eating more normally, I was able to function. So I had WBR in sept 2016 and by dec 2016 I was out walking an hour a day no matter the weather. Winter, spring and summer. That's what spurred the WBR recovery.
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Hi everyone,
I just wanted to introduce myself. I'm new to BC.org but not new to BC or brain mets. I'm glad to see there's an active community here. I'm in my 30's and so grateful to be able to say I've been NEAD for a year. Besides cancer, I'm generally in good health, not on any treatments right now, and I have a scan every 3 months. My brain hasn't been systemically treated, and there are surely some cancer cells floating around in there, just waiting to pounce, so there's a psychological burden.
I'm afraid to ask, but is anyone here also triple negative?0 -
Caillou welcome to the thread, glad to hear the words NEAD and in good health without treatments. I am sure any TNBC people with brain mets will respond soon. So happy to have another fellow Canadian as well.
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Hello everyone. Just posting an update on my WBRT sessions. I have finished 5 sessions and still have 5 to go. It has not been plain sailing. After 5 sessions, I feel more tired, no appetite and less energy. I can’t walk as far as I used to. I hope I get through the next 5 sessions with less difficulty. My radiation oncologist did say that the side effects should get better a couple of weeks after the sessions. Hope she is right! Any one willing to share their experiences post WBRT are most welcome. I need encouragement.
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MyMiracle, what you are experiencing is normal. I will say that fatigue is one of the biggest issues post WBRT. Treatment and steroids take so much out of us. I would not be a good person as far as how long it took me to get over fatigue and SE as I was severely depressed and scared to death. I did maintain walking, got stress fractures in my feet walking. My appetite returned few weeks after radiation was complete. I mainly survived on boost or ensure type shakes with protein added. I really did not like food for about 6 weeks. I did not lose too much weight. Once my appetite kicked back in, I recovered very quickly.
Your recovery will depend a lot on your mood as well. I was almost suicidal and wanting to just die at the time. Took me a long time to put those thoughts aside. I also got a social worker. A lot of people who have had WBRT have had fatigue and appetite issues but recovered quicker than me.
I will say once I felt like walking, I was out an hour a day and that sped up the recovery. Walked in all weather as well. The biggest thing you can do is move your body. Keep up your strength. March in the chair you sit in, or walk if you feel safe. This will help the appetite quicker. If eating is a problem, do get the ensure or boost shakes with lots of vitamins in it and add protein wherever you can. If there is anything you like, eat a lot of it. When you do start eating again, I found that black beans, shredded cheese and a bit of spinach nuked for 90 seconds in the microwave. I would add some wheat bran mixed with taco seasoning. Topped with queso, it is delicious and nutricious. Helps avoid low RBC so if that is possible once you can eat, I do recommend this. A digestive enzyme is also recommended after being treated to help you with eating and avoiding a lot of side effects. It does not need to be expensive to work either. Steroids and the forced menopause of treatment can wreak havoc on digestion. After adding the beans and the others mentioned above, I feel much better. If you can eat that kind of stuff, it is really good.
I have been going at Stage IV according to my MO from the start, came out of a 10 cm tumour, most aggressive form of BC, IBC and HER2+ I have been going for 5 years. I am strong, physically active and a lot of the cognitive issues I had, not being able to read and retain books anymore and all of that has lifted. I have had some short term memory stuff but even that has improved. If this helps to hear at all, I am glad to say it. Give yourself time to process everything. It takes a long time and treat each day as a new start as far as recovery. Good luck.
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Miracle and Mara, I've had similar SE after my wbrt. But I also chemo now so I get some SE from that. The worst part for me is lack of appetite and leg weakness. The radiation oncologist also told me that it would take time to recover (its been like a month and I don't feel so much better guess no one knows the actual answer) my cognitive ability seems affected. I don't remember a lot of information.
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Mara, thank you for the welcome. Your presence and advice here are helpful, and 5 years is so inspiring.
Miracle, I haven't had WBRT, but I found even partial brain radiation to be really exhausting. My energy started to recover as soon as treatment ended. Good luck.
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Selien - It's interesting you mentioned leg weakness. I had WBR at the same time as you. I have mostly recovered from the side effects, but I feel like leg weakness is getting worse. I wondered if it was from previous bone radiation, but now I'm not so sure since you are experiencing the same thing. I am having trouble walking up stairs (normal walking is ok) and if I crouch down for something I can't stand up. I'll be talking to be my RO on Friday.
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I am exactly feeling that! I can move around if i got up but if I get low enough I have a hard time to get up! My drs gave no advice other than exercise and move my legs more! When you look at where the motor functions on the brain, it made me wonder too
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Selien - I just had a call with my MO and mentioned this to her. She said it could be a side effect of being on the dexamethasone. I was originally on it for brain swelling and then had to go back on for liver pain. If you google side effects of the steroid, muscle weakness (steroid myopathy) comes up and seems to describe what I am experiencing. Are you on steroids?
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For those recovering from leg weakness, if stairs or walking are not yet options, a mini elliptical that you can use from the couch may be the way to go. I use a cubii jr. Not selling for them or anything, but I supplement my exercise with it. It does not require anything, though I would get a mat. It is more substantial than simple mini peddlers. It usually is available at shopping networks on TV. It will definitely strengthen leg muscles and take any fear out of falling or losing balance.
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First, I don't have brain mets, so kick me out if I shouldn't be here.
I do want to say that I just purchased this Under Desk Elliptical after reading Mara's recommendations. I bought mine on Amazon. I did not buy the mat, but it seems to be stable on my floor. The little doo-dads for under the wheels are perfect for keeping my rolling office chair stable. There is a fancier version of this elliptical that has Bluetooth, etc., but I just went for the Junior at around $250 on Amazon.
My review, is "Man, I love this thing!" I'm suspicious of too many good reviews on Amazon, but Mara convinced me (Thank you, Mara). It's heavy duty, weighs about 27 pounds, and if I put my Fitbit in my sock, then it counts my steps. No regrets.
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I was weaned off the steroids last week so hopefully I'll get better soon. My chemo dose was also lowered and I actually just had a cosmetic surgery. Theres too many possibilities! Let me know when your legs seem better 😌
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I haven’t had WBR but I am on steroids. I definitely have leg weeknesd. I also have anemia. Might want to have blood levels checked as not having enough red blood cells or hemoglobin also makes me unstable.
I have had gamma knife and cyber knife radiation:
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I was also anemic earlier this year myself and can definitely agree this would help contribute to the leg weakness. The only way I could turn this around for myself was eating a lot of beans and spinach with meals. Cooked spinach as well. I no longer have anemic blood counts.
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Update: I have stopped my chemo because I ended up getting hospitalized for blood clots. I will say I had horrible diarrhea and terrible rash on my hands and feet while there (5 days). I am so glad that I stopped the chemo. I felt so awful but I still don't feel like eating. I guess we will have to see what we have to do next. My legs are still weak.0
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Seilen, I am so sorry to hear that you had to be hospitalized and all you have gone through, I can totally see why eating would not be an option right now. Hopefully the break from chemo and the treatment for the blood clots gets on a better path. Hugs going out to you.
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Starting the Herceptin, Xeloda, Tukysa combo on Tuesday, hopefully with good results on my brain mets. I’ll keep you updated. My MO wasn’t pushing it, as I had the option to remain on H&P but she was a lead researcher in the her2climb trial and was excited about its effectiveness in the brain. Fingers crossed
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Good luck illimae! Fingers crossed this does the trick.
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Hoping all the best for you illimae! I'm finding its finding the right dosage amount that makes the treatment bearable.
Thanks Mara
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Glad to be here for you Seilen0 -
Hi Lumpie,
I have leptomeningeal brain tumor. I was diagnosed on April 2020. I got 2 radiation treatment for the whole brain and couldn't tolerated it, so I decided to stop those treatments. I almost died from radiation treatment. My life was hell for 2 months.
After healing from radiation damage (2 months), I was put on Capecitabine, Tukysa and Herceptin on July 16th. I am handling these drugs well. However, I have hand and foot syndrome. Bottom of my feet burns and hurt. So my MO has suggested that I use 'udderly smooth' cream for my feet. It seem to work. I try not to walk a lot. Also, my knuckles have darkened in color. Which is annoying, and I have read that is one of the side effect of Capecitabine. I am not sure if this treatment has helped me or not since I haven't had any scans yet. I may have scans next month. Also, They give me bad stomach burn so I take pepcid AC every day. I take 3 capecitabine (1500 mg) twice a day and 4 Tukysa (200 mg) twice a day. Capecitabine is 2 weeks on and one week off.
Overall, treatment seems just fine. I also take CBD oil every day to prevent seizures. I was on Keppra (one of the worst medications I have ever taken). I stopped taken it as it was making me crazy. I was hearing voices and feeling angry all the time. CBD oil has helped me relax and sleep good. I also stopped taking steroid as it increased my blood sugar and caused diabetes mellitus type II. I am on insulin now as a result of the damage caused by Dexamethasone (steroid).
I hope that you can handle the medications well. Do not fear the medications. It is well tolerated. Better than IV chemo for sure. I pray that God bless you with healing light.
Love and Peace
Star
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star- that’s a lot of meds. Xeloda is very hard on some people. have you found the xeloda thread?
I am also on tukysa for brain Mets. I take it with kadcyla .You g
Have been through the ringer and I wish I could do more for you.
Big hugs.
I
Pm me if you’d like.
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Thanks lulubee! Good to hear from you. Looks like you are almost at your 10-year metastatic anniversary. Congratulations and hope you get a lot more years!!!
Hugs, Susan
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LFF,
Love the photo of you and your son! Your hair has grown back and looks terrific! I'm still completely bald with no eyebrows or eyelashes but feeling good. Our air finally got better today. My son has been in Seattle all week and the air looks like it's still bad there.
Hope you are doing well.
Hugs, Susan
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Has anyone felt a lot of fatigue with xeloda,tukysa,herceptin? I've been really tired and weak lately. I'm hoping it's only in the beginning of the treatment and I can shake it off. I also got H and F and diarrhea. I'm just tolerating to SEs but the results have been positive.
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Seilien, it’s only my 4th day on this combo and I haven’t noticed any SE’s or weakness yet.
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