Brain Mets Sisters
Comments
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Just an update that I'm home from the hospital. It turns out my fever was being caused by my liver. My rising liver numbers were being caused by Tuksya, so I'm now on a break from Xeloda/Tuksya and will resume with a reduced dosage on Tuksya when my liver recovers.
Apparently this happens in 40% of people on Tuksya? Anyway, hope this info helps someone else. It wasn't great having to be in the hospital for four nights while they figured that out.
Best wishes to all!
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Superdenovo, thanks for the info. I know labs are being done often to check for any issues but I had know idea that the percentage was that high or the related symptoms. Good to know and I’m glad you’re home with an answer.
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Superdenovo,
I’m glad you’re home and they figured out what was going on. Last night I had pretty bad chills and just thought I’m super sensitive to the cold air right now, however I thought they were pretty bad and slightly alarming. I had chills again tonight. I don’t really feel warm and I feel alright, but because of your post, thought to take my temperature, and it’s 101! The internets told me I should call the dr immediately! 😬
I just called the MO oncall and she said to hold off on the meds tonight till we see what’s going on, and to take Tylenol if I want. I have no other symptoms of infection though. I always have some degree of nausea. No diarrhea, cough, or trouble breathing. My liver numbers were fine on Wednesday and I just started cycle 2 yesterday, so I don’t know. Isn’t this fun? Yeesh. 🙄
Well, know that your post helped me!
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Superdenovo, glad you are home from the hospital and the cause was found out. Hopefully the Tuksya at a reduced dose provides less SE and healing for your liver.
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There are separate studies on memantine evaluating it for efficacy in preventing cognitive decline with WBR. My RO thinks it is worth it. It is a "what the heck, why not drug" with no side effects. I started taking it two nights ago. If it really has no side effects, I will continue.
What I am most concerned about right now is the Dex I am on. I have been taking 4 mg twice a day for about two weeks. I feel amazing (except for very little sleep) and wonder when, if, how I will be taken off and what the consequences will be. I've taken high dose prednisone for my MS before and do ok coming off. This is different. This is what they give to the horses in the Kentucky Derby. Animal cruelty, yes? How long will my doctor wait to take me off? What are the downsides of staying on/coming off? This is a side issue I am thinking about to avoid thinking about the WBR that will start on Tues. after my little break. My life feels like groundhog day right now. But that is about to end.
Have a nice rest of the holiday weekend everyone.
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Jaycee
I am two weeks out from wbr and fatigue is the worst I had. It really hit me harder then any other radiation. I too take mematine and am struggling with the decision to continue. From what I've read there doesn't seem to be any proven benefit. My MO said the same and that a lot of people stop taking it. For now I'm taking it but will talk to RO at next appt.
Another thing I was surprised about was I thought my scalp would be more burnt from radiation but it is mostly my forehead. So make sure you know where they are radiating so you can prepare that skin. I was applying lotion to my scalp not my forehead so was surprised when that was the area I had issues with. I am also dealing with severe dry eyes. My eyes constantly are watering. Just a heads up.
Julie
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Thanks for the info, Jjzn. Is the fatigue like sleepy fatigue or body fatigue? I could use some sleep after the steroids. I don't really DO anything so I don't recognize fatigue. The memantine is cheap so if I don't have side effects, I will continue it just in case it does something. I'll watch my scalp and forehead for burning. Right now, I have dry mouth, not eyes ... yet.
I got the drug (Walgreen's) from two different manufacturers. I tried to look them up to see if I could find the side effect profiles. Different manufacturers sometimes have slightly different side effects. Only found one. This drug is made (distributed, marketed) by about 50 drug companies all over the world. What a racket. Lots of people making money off of our misfortune.
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Memantine for the prevention of cognitive dysfunction in patients receiving whole-brain radiotherapy: a randomized, double-blind, placebo-controlled trial
Paul D Brown 1, Stephanie Pugh, Nadia N Laack, Jeffrey S Wefel, Deepak Khuntia, Christina Meyers, Ali Choucair, Sherry Fox, John H Suh, David Roberge, Vivek Kavadi, Soren M Bentzen, Minesh P Mehta, Deborah Watkins-Bruner, Radiation Therapy Oncology Group (RTOG)Affiliations expand
- PMID: 23956241
- PMCID: PMC3779047
- DOI: 10.1093/neuonc/not114
Abstract
Background: To determine the protective effects of memantine on cognitive function in patients receiving whole-brain radiotherapy (WBRT).
Methods: Adult patients with brain metastases received WBRT and were randomized to receive placebo or memantine (20 mg/d), within 3 days of initiating radiotherapy for 24 weeks. Serial standardized tests of cognitive function were performed.
Results: Of 554 patients who were accrued, 508 were eligible. Grade 3 or 4 toxicities and study compliance were similar in the 2 arms. There was less decline in delayed recall in the memantine arm at 24 weeks (P = .059), but the difference was not statistically significant, possibly because there were only 149 analyzable patients at 24 weeks, resulting in only 35% statistical power. The memantine arm had significantly longer time to cognitive decline (hazard ratio 0.78, 95% confidence interval 0.62-0.99, P = .01); the probability of cognitive function failure at 24 weeks was 53.8% in the memantine arm and 64.9% in the placebo arm. Superior results were seen in the memantine arm for executive function at 8 (P = .008) and 16 weeks (P = .0041) and for processing speed (P = .0137) and delayed recognition (P = .0149) at 24 weeks.
Conclusions: Memantine was well tolerated and had a toxicity profile very similar to placebo. Although there was less decline in the primary endpoint of delayed recall at 24 weeks, this lacked statistical significance possibly due to significant patient loss. Overall, patients treated with memantine had better cognitive function over time; specifically, memantine delayed time to cognitive decline and reduced the rate of decline in memory, executive function, and processing speed in patients receiving WBRT. RTOG 0614, ClinicalTrials.gov number CT00566852.
Trial registration: ClinicalTrials.gov NCT00566852.
Keywords: brain metastases; cognition; memantine; neuroprotective agents; radiotherapy.
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Preservation of cognitive function following whole brain radiotherapy in patients with brain metastases: Complications, treatments, and the emerging role of memantine
Meghan Lynch 1Affiliations expand
- PMID: 30200844
- DOI: 10.1177/1078155218798176
Abstract
Whole brain radiotherapy is the mainstay of treatment for patients suffering from stage IV malignancies that have metastasized to the brain. Although this therapy is often effective at reducing tumor size and burden, it is associated with a spectrum of toxicities that often result in irreversible cognitive decline. Various drug and non-drug therapies have been evaluated to treat this neurotoxicity after whole brain radiotherapy is administered; however, currently available options have shown little benefit or come with side effects themselves that may outweigh the benefits of their use. For this reason, current investigations are focusing on preventing cognitive decline, rather than attempting to attenuate symptoms after they occur. Memantine has consistently shown promise in both in-vitro and in-vivo studies as a neuroprotective agent that may improve cognitive outcomes in patients undergoing whole brain radiotherapy. Memantine use prior to and during whole brain radiotherapy has been shown to significantly delay time to cognitive failure and reduce the rate of decline in memory, cognitive function, and processing speed. Its use has also been linked to significant decreases in brain edema, brain infarct size, and brain vasculature changes following whole brain radiotherapy. Memantine offers a promising safety profile with high tolerability and limited side effects. The objective of this article is to provide an overview of the target patient population, the neurotoxic effects of WBRT, current treatment options, and a summary of the available literature surrounding the use of memantine in this setting.
Keywords: Brain metastases; cognition; cognitive function; memantine; whole brain radiation.
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Sorry. I am hopped up on steroids. Interesting stuff, though.
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jaycee
I was both sleepy tired and body tired. Sometimes I couldn't keep my eyes open. I was on steroids previous to treatment when I was on taxol. So being ready to go to bed at 930 and sleep almost all night was a dream.
I wonder if taking mematine once a day instead of twice a day will still help you? I was told to take it for six months is that what you are doing?
I totally understand the hyped up on steroids. I used to get so much work done in the middle of the night!
Julie
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Well, I gave it the old college try. I took memantine for three days. After eating breakfast today, I have severe abdominal pain. Gonna have to stop. The half-life is 60-80 hours so I have a few days to get it out of my system. I have a history of GI issues with lots of GI side effects to meds. I hope this does not affect my ability to start rads tomorrow.
Jjzn, RO did not say how long I was to take it. Moot point now. It was the smallest dose, 5 mg. How does that happen? I am discouraged now.
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Jaycee, I am sorry the memantine gave such side effects. I do want to encourage you, I did not take it at all and my cognitive functions are intact after almost 5 years from my whole brain radiation. I wish the same for you.
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Hi Jaycee and Julie,
I am about 3 weeks out from wbr with a bit of gamma knife after cause wbr had to skip spots my skull was radiated previously. I am struggling with the fatigue but believe it won't last forever.
My stomach is a mess and I am trying to eat many small meals to keep it happier but lots of cramping. And I struggle to keep my systolic bp over 100, anyone have similar. My mo is well aware and I have a pre existing heart condition that could be to blame.
Jaycee thanks for all the wonderful info. I am going to try and stick with nemenda for now. I do hope your oncology team finds a way to keep you comfortable.
Julie I have had dry eye since skull rads a few years ago my opthalmologist recommend preservative free otc lubricating eye drops. I use a brand called refresh because they come in the biggest box. They are single use viles which makes me feel they would be less likely to get bacteria in them. They do help me. I do hope you get some comfort.
Thanks for all the wisdom mara your posts mean alot to me
Peace to all
Mary
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When do the GI side effects start after WBR? How long do they last? Are there any worthwhile treatments? I am REALLY worried about them. Does everyone have them or do some escape? Not me, of course. I get GI side effects from everything. Darn.
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Jaycee, I found the steroids ruined my digestion. I started taking digestive enzymes with every meal and the heartburn and pain in lower abs digesting have gone away. I was intolerant to anything with peanuts, vomited or got diarrhea from eating but when I started the enzymes with every meal, I don't have that problem anymore. I have no side effects from the enzymes and they help alot.
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Mary
Thanks for the info I have been using eye drops but they may be old. I'll try the ones you suggest and see if it helps. I don't have eye lashes anymore so not sure if that is contributing to it also.
I did have stomach issues. I found if I ate before I took the mem it was better. I only threw up twice during radiation. Once each week. Not sure why, RO said wbr wouldn't cause it but it seemed like the cause to me since I wasn't on anything else. However Mara makes a good point I was just coming off steroids so that may have been my issue. I started eating yogurt in the morning and that seemed to help.
Fatigue got better about 2nd week after I was done.
Julie
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Hi all - I am also 10 days out from WBR so thought I would join in with side effects to help those about to have it. I feel 'ok' at the moment - the three days after I finished were actually the worst for me so far. I was very nauseous and had strong headaches, I had to take the maximum anti-sickness and was waking up every three hours at night to take more. I also got bad digestive side effects from the steroids. Ten days out I just tapered form 5mg to 4mg steroids and I'm managing the heartburn etc fine with lansoprazole and peppermint capsules. I feel a bit unsteady on my feet but otherwise no headaches or nausea which I take as a win!
I understand from others that the fatigue will get worse before it gets better so I am expecting to get more tired. I also hope to start back in chemo from next week (pushing my team as I'm scared to be off chemo - I have mets in my chest) which will of course wipe me out more. I guess I just have to push through and rest a lot.
Sending love to all brain mets sisters today xx
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Phet, I am glad that you are done your WBR, sorry the drugs and rads are messing up your system so bad. One thing I will shout from the rooftops for the hearburn and such that follows is to consider a digestive enzyme, I don't mean a probiotic but the digestive enzyme can help repair you digestion. It did that for me and I no longer have to take the rabeprazole I used to. Just a thought to make life and one SE a little easier for you. Steroids ruined me for digestion and it did not improve as time went on, never knew what foods would set off a bad reaction with nausea, vomit or the big D. Enzymes gradually allowed me to eat what I like with no issues or heartburn.
If you already take one, that is great.
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I'd like to try a digestive enzyme to see if it will help correct my low albumin and protein. I also had low B12 (corrected with SL supplement) so think I have a malabsorption issue. I take Verzenio so want to avoid any contraindications to that. My MO and oncology pharmacist haven't said "no", but they also haven't said "go ahead". What digestive enzyme product do you take?
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I am in Canada but looking at Amazon, this one looks good... Should have stuff in it to digest fats carbs and protein easier. If your stomach is bad with most things, you can take it with every meal. If only a certain food bothers you, take it before that. Take it right before you eat.
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I started the rads last week. I have had four due to the holiday. I have an issue with them. My throat has mucus collected in the back due to some med I am on. It makes me feel like I am choking while the treatments are going on. The techs call it anxiety and made the hole in the neck bigger but that doesn't help. I had to swallow yesterday and that moves my head a little. I am worried that I will mess up where the rads go. Is slight movement a big problem? I told MO and the nurse but they just want to move on. I hate when I am ignored.
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Jaycee,
I really hate being ignored as well. So sorry. My skull mets and rads have messed up my sinuses awful. I am on a super nasal spray now that helps to dry things up. It's prescription Azelastine hydrochloride nasal spray.
I wish you well.
Peace
Mary
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Jaycee, I am sorry they are not listening to you about the throat. They should have suggestions ready for that type of thing. Maybe what was suggested above. You won't mess up your positioning because your head is firmly in place so I would not give it a thought.
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MARA,
Thank you for your response to my question about digestive enzymes. I did finally select NOW's Optimal Digestive Enzymes. It was one of several digestive enzyme products reviewed by ConsumerLab and got a favorable rating.
Wendy
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I apologize for intruding but I’m not sure where to turn. I’m starting to get worried but haven’t checked back in with my oncologist yet.
I’m almost 9 years with stage 4 de novo with Mets to liver and spine. Still on my first line of treatment (herceptin and perjeta/xgeva). I’m supposed to take an AI but i don’t (had an oopherectomy)...anyway...started having a pain in my left temple. I thought it was a headache, but it’s more of a pain. Sometimes sharp, sometimes dull. Sometimes movement makes me notice it. It’s happened only a couple times (two weeks ago for a couple days) and then now again today. I have lost weight and sleep a ton (but also dealing with extreme grief). Had the Pfizer vaccines... thoughts
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KJones, it feel like pressure like someone squeezing your head. My first brain symptoms involved pressure in my head mostly behind the eyes.
Either way, if you have not done so, I would recommend you request an MRI through MO and describe the symptoms since you are HER2 positive. It is quite common for us HER2 people to metastasize to the brain. Not trying to sound scary, just commenting. I do get that stress and grief can also cause head pain as well as notmal headache or migraine but the pain and only being on one side is suspicious to me and bears further investigation.
Keep us posted either way, I am sorry you are having to be concerned about this as well.
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thank you for taking the time to respond. I appreciate it! I’ll call my MO.
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Good to hear, keep me posted whether it is brain related or not. i am hoping the best for you.
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After a week of WBR, I have lost my ability to have a bowel movement. That area of my body is paralyzed, frozen. I am still on high dose Dex. It's been a month now. Could that be causing this? I fear it is a neurological response to the brain cancer and it will never be better. I am really scared. I just emailed my palliative care team and will talk to them tomorrow. Did any of you have a severe neuro deficit so soon? Did Dex cause something like this?
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