Brain Mets Sisters
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Jaycee,
I have had significant difficulties with constipation since wbr. I am almost 30 days out and on dex for two more days. My bowls do move at least 3 times a week. I wonder if it's the dex or the wbr. My mo is aware and I take senokot twice a day. But if you are completely tied up I hope you've called your mo. That sounds miserable and I would hope they would have help. This has been a far more difficult ride than I thought it would be but I am still hoping it improves in the coming weeks. I do so hear your pain and wish you get some comfort.
Peace,
Mary
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High dose dex can definitely mess with your digestive system. Your brain is also still inflamed from the radiation. That aspect of WBR does last a while but does go away. They should hopefully be weaning you off the steroids soon and you can settle back into whatever you eating and doing before. I would still suggest a digestive enzyme to help when you can eat and of course seek help for the bowel movements. You are also retaining sodium while on the steroids which may have an effect.
I also want to say that I can empathize with your fear of having the breast cancer mets in your brain. You do NOT have brain cancer. Don't read about brain cancer and WBR if you have because it will scare you further and this is not what you are dealing with. I scared the shit out of myself reading about glioblastoma patients and their lack of quality of life not registering that I was dealing with breast cancer in there. I think there is some of that for you. I hope it can fade in future.
i don't believe you are losing your cognitive ability at this point. I can believe the combo of steroids, stress and treatment contributes to the fear we feel. I would say it might be worth it to ask when you can wean off the steroids to see where you are at. Let the doctors figure out the bowel movement issue and whether it is brain related or the drugs you are on. Even if it is related to the brain, it would most likely not be a permanent issue. I am sending healing thoughts your way. Keep us posted.
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About a week into WBR, my bowels shut down. I feel like I am paralyzed down there. I never get that urge to have a bowel movement. Needless to say, I am backed up. I have talked to doctors and they are mostly useless. They talk about Senokot etc. and are zero help. I did two doses of Lactulose which is VERY strong. I have no control when my stool is liquid. My DH is my rock. He cleans up the poop and me and keeps me sane. I finally took Imodium last night. After cleaning out some with the strong drug, I will be ok for the weekend. I saw my RO today. He is very good and calls me often. Radiation is going ok but I still feel like I am being choked during the treatments. I can deal with that. I skipped the one yesterday because I couldn't stop pooping all over myself. I will not take that route again. That is a serious hit to my quality of life.
I discussed this problem with all of my doctors. None of them think that it is caused by the Dex except my RO and me. He started backing me off the Dex yesterday. I felt very shaky today but no other reaction to going from 4 mg twice a day to 4 mg once a day plus 2 mg once a day. I'll do that until I see RO next week. RO said steroids can do all kinds of weird stuff so I hope they are causing the bowel issue. He also said I have no lesions in the area that would cause it. Maybe just wishful thinking. So that's my story so far. I just wanted to write it all down and see what you guys think. Thank you for being here.
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Jaycee, I would tend to agree with you and your RO. Most digestive issues I had involved long term steroid use destroying my digestion. My bowels did not move properly either at the time. My MO never tried to tell me the steroids did not do a number on me and I weaned off a few days early to get off them. My digestive issues were ongoing. Eating was hit or miss the next couple of years until the digestive enzymes that let me eat higher fiber stuff and stay regular. I also dropped Perjeta due to fecal incontinence. Glad you are weaning off. Having to clear things out and plug them up with immodium is no way to live. Hopefully being off them will free up your bowels.
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Jaycee you are right that is no way to live. I hope weening you off the steroid is the ticket. Hoping today was your last day of WBR. And you can begin to feel better.
Julie
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No, not my last day. I have done half of the 15 treatments. I've done 8 so 7 left to go. Not so many. I'll make it. The treatments are not bothering me (yet). Accept the bowel thing.
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Jaycee hang in there!
I'm curious why you did 15 and I did 10? You would think the whole brain would be the same?
Julie
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I have heard of both 15 treatments and 10 treatments of WBR myself. I had 10. Not too sure myself why it would be different either.
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I wonder if it's the number of mets? I had 6. Mara didn't you only have 1?
Julie
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It may be based on the tumor burden in the original MRI. I have 15-20 lesions/tumors. My RO chose to do 15.
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Yes, my met was 10 cm by the time it was found. Only reason it was found was because my brain swelled and caused seizures.
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Mara Did your picture change?
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Hi beautiful ladies! It’s been a couple of weeks since I’ve been active on here. Been dealing with appointments. Going in this week for 5 Cyber knife treatments in brain stem and occipital area (Small little stinkers, but still worrisome). Not sure I’m entirely okay, or nervous. Feeling numb to any emotions, if that makes sense. Asking for prayers and good vibes and maybe positive words if it’s not too much to ask. It’s been a tough month and I’m tired... but I feel like I can’t be.
I can’t get tired and let cancer win!!0 -
Roro you can do it! We will all be here with you cheering you on!
Julie
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Yes, I uploaded a new avatar on facebook and here. It was taken today.
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Roro, we are here for you and wishing you the best. Luckily, the spot treatment can be done for many mets and most often successful. Many drugs that cross the BBB as well. We got you.
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Great new pic Mara!
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Thanks Mae! Just took it yesterday.
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Thank you Julie! Means a lot. Scared of what’s to come, like I haven’t been here before.. I know what to expect, I just don’t know that I’m emotionally ready for it. I thought I was doing so GOOD and this took me by surprise so I’m so disappointed.
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Mara, thank you for your encouraging words. I am hopeful that things will be okay. Just disappointed it’s happening again. I have to work on my mindset.
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Glad to be of some help. If it makes you feel better, I felt the same when I had to get the same spot radiated too because I was scared I would keep progressing.
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Roro I Understand. It's hard when you think you are doing good and then you hit a bump in the road. I went through the same recently when my brain mets were found. Let us know how you are doing. Hopefully the next five days will fly by.
Mara I thought your picture was you and you just got a new wig! Good job. I need to learn how to make an avatar.
Julie
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Mara, It's like a never ending story and I mean.. in a way we should be glad this is ongoing because we are still here but it's been a dark month... also my brain mets always pop around summer time and as silly as it sounds... I just want a “normal"summer!! It's been 3 years since I started this journey all together and I miss having summer breeze on my hair without bald spots :-/
Thank you Julie. I hope your mets are under control now and you are doing great. Hoping I don't get any weird symptoms from cyber knife.
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Thank you Julie. I hope your mets are under control now and you are doing great. Hoping I don’t get any weird symptoms from cyber knife.
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Hi Jaycee,
Are you on a high dose of Dex because of your MS? A month is a long time to be on a high dose of Dex. I didn't have to take any steroids during WBR since I didn't have any symptoms. I did take a max of 6mgs of Dex when I had oral mucositis so bad I couldn't even drink water without pain. I tapered back down to zero within two weeks. My MO said I could not be on dex for more than two weeks.
I never had any GI problems but food tasted like cardboard so I lost about 30 pounds in a month. Went from 132 to 102. I had 20 treatments of my brain and eye at the same time. Felt fine during treatments despite the weight loss since I was about 15-20 pounds overweight at diagnosis. Hit a wall of fatigue a month after treatments were over.
Never got any kind of sunburn from the radiation. I think this is a rare side effect as I have never heard of it on this board. WBR is very precise so they should be able to do it without burning your skin. My RO even spared the hair on the top of my head as well as my cerebellum. All while treating an eye tumor.
I took Namenda for years. My insurance kept paying for it and I had no SEs so I figured there wasn't any downside. One RO I saw when my regular RO was out told me it wouldn't work. Yeah? So if it were his own brain he wouldn't give it a shot?
The loss of your bowel movement is very scary. I wish I could help you diagnose this but I've never heard of that SE. Doesn't sound like something that would be caused by neuro decline from WBR. I hope they can figure it out right away.
Hugs, Susan
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I lost the hair on top of my head so I clip my bio hair short and just wear my wigs. Most of them are the same style as in the picture. They fit tighter to my head and look like real hair.
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That’s amazing Mara. I really need to up my game when it comes to wigs. I am trying to order some halo wigs asI think I’ll lose some hair again. I would’ve stayed with a pixie after chemo but then brain mets and radiation happened and last year I lost about 1/3 of my hair after srs (mostly side of head and bottom) for a 1 cm spot treatment in the cerebellum! It was so upsetting, specially because my dr. never mentioned I could lose that much hair. This time I want to be prepared.
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Roro I have two halos and I love them. They are so easy!
Julie
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The first wig I found that I really liked and looked natural was the Casey pixie wig, same as the one I have on in this picture. Mine has two shades of blonde with brown roots. It can be found on the Paula young site. Darker roots make wigs look more natural and a less full wig is better for being natural as well. The prices are pretty good on that site as well. Permanently lost the top hair in 2016 so I find wig wearing easier to do. The wig I am describing is also cooler in the summer as well.
Hair halos with a hat are also a good option if you prefer longer hair, only thing I don't like about the longer wigs are the hair tends to tangle since there is no oil. My wig in the picture has been going for almost a year because I only finger style and do not put products into. I also don't need to brush it either. Just spray the cap with alcohol spray and a small spray of diluted fabric softener to keep it smelling nice. If you decide to get a wig, make sure to get a velcro hair wig grip because it will hold that wig down and keep it from riding up the neck if you go short.
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Mara,
Love your wig! I've tried a couple including a ridiculously expensive real hair wig and they both looked bad and felt uncomfortable so I just went bald with a wool cap or baseball cap. Bought a wig halo recently but haven't tried it yet. Everything you said about choosing a wig makes sense.
My hair is finally growing back in again after losing it on Abraxane and Trodelvy. Two years of no hair anywhere. It's growing back very slowly, not like how it grew back after WBR. After WBR, my hair grew back quickly and I never lost my eyebrows or eyelashes despite having my eye radiated.
Hugs, Susan
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