Brain Mets Sisters
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50sgirl, well, this blows. I’m guessing the dura involvement makes WBR the better option for this scenario but I hate to see you here. Definitely in your pocket for radiation and sending you my very best good vibes 😀
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Two sessions of WBR down, eight to go. Even though I knew the treatment wouldn’t take long, I was still surprised how quickly it was done. I felt like I had just gotten on the table, and it was over. It is hard to believe that I had the brain MRI just a week ago today. Things sure did move fast. The people in the radiation oncology department have been very nice and answered all my questions, some before I asked them.
Mara and Mae, thank you for your caring and responses. This is a new road for me.
Lynn
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50's, that is the nice thing about the WBR, really is quick and easy. Tattoos let them position your mask and around it goes with the radiation, over before you know it like you said. 20 per cent done. Things definitely move fast once mets are found. I remember when my 10 cm met was found, I was pumped full of IV steroids for the brain swelling, spent the next 4 days in hospital so they could prioritize me for scans and planning for surgery and radiation followup. My head was spinning.
I hope the rest goes as well, let us know how you are doing as well as any questions you may have.
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50sgirl,I also had WBR at end of March last year due to “innumerable lesions” I don’t feel any less sharp after 10 sessions. My short term memory has gotten worse so I have to write a lot of stuff down, but I’ve always been a bit flighty and it could be due to compounding effects of treatment. I do remember a lot of fatigue and a lack of appetite, still fatigued but eating everything now. I was super nervous too. I hope everything goes well for you.
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mom started her wbr this past Thursday. Her RO decreased her chemo from Xeloda 2000mg bid to 500mg bid while receiving her 10 treatments of wbr for her dura/lepto mets and 5 treatments to her hip/back for her pain. I do have confidence in her MO and her RO and doing research but like hearing from you all as well.
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mymomsvoice, it looks like your mom and I started our WBR on the same day. We will have to compare notes as the days go on. As you may already have read, I was surprised how quick the treatments are. Even though I had been told that they would be fast, I was a bit shocked. I have a 30-40 minute ride each way, so it is amusing that I barely have time to lie down on the treatment table before I am told it’s time to get up. I hope that all goes well for your mom.
Lynne
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50's girl and others having WBR, biggest things that commonly result from WBR are some lack of appetite, though for me resolved quickly. Used a lot of rice and got protein and vitamins through ensure during this period. I was able to keep walking to fatigue was not huge but I did hit a wall about 4 weeks post but recovered quickly from that. Short term, the brain may not want to follow a book or TV but that usually subsides in a couple of weeks. If there are memory issues, they may go away or writing things down as others do will help a lot. Put things away in the same spot ALL the time. Huge one for me.
My short term memory is fine, it is where it was pre WBR. I chalk any forgetfulness to chemo brain, forced menopause and aging for me. Everything came back but for you may take a few weeks to get back to normal.
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Just checking in. Today is my two year anniversary of diagnosis. That feels like a big deal to me, especially given that I have had both leptomeningeal disease and then intramedullary metastases (spinal cord). Xeloda and Tucatinib worked for the lepto, and currently Enhertu is working for my spinal cord (or as my MO calls it, the ponytail of the brain).
I'm happy Enhertu is working, but also I am anxious about the fact that my options for treatments with CNS penetration are dwindling. I think I'm trying Kadlyca/TDM1 next, but I don't know what is after that. I have taken Taxotere, and Xeloda with Tucatinib. Any suggestions?
Also to chime in on the topic of WBR - I am doing alright after WBR in April 2021. I do have some memory issues (nothing serious, just like forgetting why I came in a room) but I didn't really notice until I took a survey about my memory, so might be the power of suggestion. I do write things down to help!
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50sgirl-definatley will have to compare as you go through treatments. I'm praying it all goes smoothly, quickly and with lots of success with minimal side effects ❤️ were you put on namenda during treatment? A medication to help with the memory from treatment.
Superdenovo37-
CONGRATULATIONS on celebrating 2 years out after your lepto diagnosis! Prayers for continued success! And thank you for giving me hope as we begin this journey with my mom.
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Mymomsvoice. No, there was no mention of namenda. I will ask about it when I go tomorrow. Thank you. Have others here who had WBR taken it?
Thank you for everyone’s advice and offers of help and information. I have to admit that I am nervous about the possibility of cognitive impairment. The way I look at, my cognition is a big contributor to who I am. I don’t want to lose my memory, suffer any personality changes, have mood changes or lose control in any way. I have found that I like to be in control of myself. I don’t know if that is good or bad, but it is what it is. I don’t want to forget to hug my family and let them know that I love and appreciate them. I want to continue to have meaningful and fun conversations with people to hear what they have done and what they plan to do in the future. As far as lists are concerned, I a list maker from way back. Going on a trip? Need a list of things to do before we go annd another of things to pack. Oh, and don’t forget a list of things we want to do when we get there. Control you think? Hahaha.
Have a good Sundsy
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50s girl, I was not given or suggested to take Namenda myself and found no issues with not having it. I think Susan may have had it, but not 100 percent sure on that, she can probably pop in to confirm at some point.
I do want to reassure you that your cognition will be about the same as before having the WBR. You will not lose all your memories or personality from this treatment. Some people do find their short term memory impacted and as I have mentioned before, just after the WBR, it may be hard to follow a book or TV but that clears up. Eat well, stay active and those will go a long way to minimize any SE. Put things away in the same place all the time and Post Its and writing a schedule or grocery list goes a long way as well, glad you have always made lists.
I was more affected by chemopause and simply getting older. WBR has not impaired me in any significant way, my memory is fine as well.
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Mara, Thank you, thank you thank you. You have made me relax about things. I will ask about Namenda this morning but won’t be upset if I am not prescribed it. Phew!
I am feeling really good. It is such a relief to be rid of the horrible daily headaches. Decadron is not causing any insomnia, so that is good. My scalp has started tingling a bit. That usually happens about a week before my hair starts to fall out, at least that happened the 4 times I lost it from chemo. Don’t get the wrong impression. I have very little hair to lose. It has just begun to grown in while I am still on Ixempra. It is very thin and patchy and maybe 1/2 inch long. Losing it will not cause any trauma. I know that it might not grow back this time, but hey, so what!0 -
50's, glad I could reassure you. You will feel some weird stuff in your head, not painful but you may get temporary nerve stimulation, I found it felt like my teeth were aching but that was from WBR. It went away. My head has almost no hair on top, I don't shave my head but use a clipper without any guard to keep my hair like stubble and wear a wig. I much prefer wigs and have never had a bad hair day since.
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I had today’s treatment, and while I was there I asked about Namendan. My RO said that he has done research on it, and he found that the benefits are minimal for some people, and the costs are high and gastro SEs are not uncommon. With that in mind, he only prescribes it to patients he thinks will benefit the most. He met the person who ran the trials at a conference, and asked how often he actually prescribed it to his WBR patients. He seems to follow the same path as my RO. I felt goodabout the conversation. I think that we are each being evaluated based on our own needs and conditions, and prescriptions are given as needed. Nothing is perfect, of course, but we do what we can do. He also told me that he was glad I looked into it and asked about it. I have you who are here to thank for that. I feel great today.I hope you are doing well.
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Glad to hear that you got good information about why and how Namenda is prescribed. I was never offered nor asked myself about it when going through WBR.
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5 years ago today I was diagnosed with brain mets. I never would have imagined being here now and feeling pretty normal thanks to google panic (google with caution) but 1 craniotomy and 6 gamma knife radiation treatments later, here I am 😀
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Congrats on your 5 years illimae! I well remember the Google-induced panic when I was diagnosed with a brain met in 2015. Here's to many more happy and healthy years!
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WOOHOO, Mae! Congratulations on 5 years since your brain Mets diagnosis. You have lived the past 5 years with energy, zest, and enthusiasm and have not sat back and wasted time. I wish you many, many more years of joy and happiness.
Today marks my half way point in my WBR. 5 sessions down, 5 to go. I feel good. My headaches are gone thanks to Decadron. I have been off chemo so my energy level is up a bit. I know that could change from rads,,but I will enjoy it while I can.
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Well, today should find you 6 of 10 WBR sessions 50's, you'll be done next week, woo hoo! You've been doing well so far and that is great.
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You are right,Mara. One tomorrow and then the weekend off. Today I feel like I was hit by a ton a bricks, no pain, just exhaustion. I don’t know why. I slept well last night. I didn’t expect fatigue from WBR to hit so soon. Maybe it’s just a fluke. The tech even extended her arm to me to lean on when she took me to the treatment room. That’s when I know it showed. Oh well, I still feel good,so I am taking it easy today.
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congratulations on 5 years illimae!
50sgirl- glad radiation seems to be treating you well. Mom just started decadron for her headache today. She says it's more of a nuisance than pain and is starting to complain of sun burn type pain on the top of her head. Haven't noticed hair falling out yet. One more day and enjoy your weekend break:)
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mymomsvoice, Did your mom just develop the headaches or did she have them previously? Mine began weeks ago and lead to the MRI that discovered the brain Mets. The pain was strong, but after a few days off Decadron, they subsided. I hope your mom has some relief, too. I also hope the sunburn sensation isn’t too bothersome or long lasting. My hair hasn’t fallen out yet either. Perhaps it won’t, but I don’t have much to lose. I hope your mom is doing well. She is blessed to have you by her sude
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50sgirl,
Just catching up on the posting on this thread. Love your attitude!
I was diagnosed Stage IV with 12+ brain tumors along with eye, lung, and bone mets. That was 8.5 years ago and I'm still doing well. I did take Namenda for a few years after my WBR. Not sure it did anything but there were no side effects and insurance paid for it so I kept taking it.
As Mara and Illimae said, you will not lose your what makes you you, your sense of humor, etc. I have to be very diligent about posting appointments to my iPhone calendar, having a set place to keep things, and taking notes, but I've gotten used to it. Radiation seems to be universally effective in treating brain mets. I wish my other mets areas could be treated so easily and durably!
Hugs, Susan
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50sgirl- my moms headaches only started yesterday. She actually hasn't had headaches until her radiation started. She had been having increased back pain since this summer from her bone mets. She had a bone scan that showed progression to her skull bone and vertebrae. Her mo then ordered and full spine mri and brain mri. Her brain mri was concerning for the leptomenigeal disease which totally threw us off guard because shes had no neurological symptoms. Yet, this is where we find ourselves today. She's made fighting MBC look easy since 2015 so praying after the radiation she can continue to beat the odds. I find so much comfort and peace in everyone's post so thank you ALL for being my inspiration!
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Susan, I started following you here even before I was officially DX with my met. You made me feel better because when I was told I had a brain met, I figured I would die soon after but I am still here too and doing physically well too. Just have some balance issues but I have dealt with those since I was in my 20's so am just using a cane nowadays. Otherwise, other than some weight gain, I have been stable a long time, NED from the chin down.
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Dear illimae, huge congratulations. I strongly believe you have many many years ahead of you and will continue to inspire and keep helping us all. You are the face of human will, and an example of standing firmly against all odds. I am not a part of this thread but... I have been reading you for many past years. Thank you for everything, Saulius
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Thanks, Mara! I appreciate your kind words. You inspire me too!
So amazing that you are still NED from the neck down. There are a couple of women in my support group who have been on Herceptin and Perjeta for more than 15 years. They are living with a high quality of life, physically active, and living independently.
I strongly believe you will be able to thrive as well.
Hugs, Susan
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I had a second brain operation last Thursday- due to the "too much of the tumour left" for SRS (go figure whether they left too much of the tumour, or those were different standards as I changed my providers of care from NHS to private , or it was due to the delay between operation and SRS (told 1 month but 2 month + elapsed) so the tumour must have grown again. The recovery was very quick and easy , I could go to work 3 days after operation if needed ! So if you are worried about brain surgery - keep in mind that it can be as easy as it was for me. 2 days in the hospital only , no need for any special care etc, can start working a couple of days after op.
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The brain surgery for me was also very simple and so much easier than the rads were as well. Spent from Friday to Monday morning in hospital for the surgery, steroids made me so hungry and I fractured my feet walking round and round listening to music, never thinking of putting on my shoes. I will say, when I got out, the staples in my head were quite obviously and when I stopped in at a grocery store, some well intentioned lady said how nice it was to see someone like me could get out and about. I said thanks, walked away and my eyes rolled all the way back in my head.
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I am planning a few different things today, starting with some walking. 1/2 hour on the treadmill following chores and my daily jumble. Other forms of walking later as well. It looks nice out so also may take my cane and walk around the block later. No rush on anything. Going to focus on exercise first before adding in all the survey stuff that keeps me sitting too long, maybe do a good march with lifted knees as well.
I am wanting to reuse plastic so going to take empty rubbing alcohol bottles which were well rinsed and using them to put in some of my foaming soap mix. I cannot do this with every bottle but it would be helpful to keep a few extra, already mixed up the soap mix, letting it cool down so I fill the bottle, using spare empty 4L vinegar bottles as well. Found some used spray bottles as well so storing them after cleaning them off and use them if I wish. I can store quite a bit under the bed or sofa in the living room.
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