Brain Mets Sisters
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Thank you for all the information Mae, I am sorry that it is so difficult to deal with for both drugs but hoping it knocks back any brain mets. It will inform me when having to decide what kind of drugs and effects I could possibly tolerate and for that I thank you very much for your help.
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Hello mara51506,
I am on Kadjinti, tukaysa and xeloda. I am taking 500 mg xeloda 2 pills twice a day. It used to be 3 pills twice a day but after I had bad reaction under my feet, my oncologist reduced it to 2 pills twice a day. I am on Tukaysa 150 mg. 2 pills twice a day. It used to be 200 mg. twice a day but my Oncologist suggested to increase it because I started with the low dose. She wanted to see if I could tolerate it. If I did, she said that she would keep me on higher dose. I have leptomeningeal disease which was diagnosed on April 2020. I only had 2 whole brain radiation. I couldn't handle the radiation, so I am just on these pills and Kadjinti.
I wanted to tell you my experience on these pills. I have constant high pitch ringing in my ears, especially the right one.
My tongue looks kind of raw, I can not taste food much.
My hair growth is slower.
My stomach burns to I take Pepcid AC 20 mg every day.
My legs and feet would get sharp pain as if someone poke me with a needle, but it doesn't happen often.
My body has very bad edema, I am not sure this is caused by these combination.
I feel tired,, but I can manage it.
The soles of my feet peels and after they peel, they are sensitive.
My hands are sensitive.
The palm of my hands feel leathery, thick, just like the soles of my feet. Compared to my feet, my hands do a lot better.
I hope this helps, and I pray that miracle would knock on your door soon.
Star
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Starlove, this is very informative to know because it will dictate what I may be willing to take or not. I am not convinced that anything that could ruin my feet would appeal to me. I walk long distance and to lose that would be awful. I know Xeloda can be rough on them. Not sure. I do appreciate you and Mae sharing your experiences here for me and everyone else who happens to read it. I am already researching HFS and avoiding and treating it too. Everything helps.
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Starlove, I’m in this combo with Herceptin and the Xeloda is causing nausea, vomiting, taste issues and some sensitivity in my feet too at the 3,000/day dose. Nothing but some manageable diarrhea from the tukysa so far. I’m hoping another Xeloda dose reduction makes it easier.
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Hi everyone, has anyone dealt with a significant amount of mets to the dura? (I am not totally sure yet about whether I have actual brain lesions. If I do, they are small.)
Long story short, I started having very mild headaches and I mentioned it to my MO. (I almost didn't mention it because it was such a subtle change!) A brain MRI in August showed a slight thickening in one area of my dura. I started Ibrance. Now my October brain MRI is showing A LOT of thickening everywhere in the dura. :-( I am starting to have more significant symptoms too, mostly a constant pressure headache, dizziness and unsteadiness, nausea, and this unrelenting brain fog.
I am terrified that the dura mets have progressed so much in such a short time. I'm afraid that it's the beginning of the end, because my cancer has been resistant to so many treatments. I see my MO tomorrow. I don't know what to expect, but I think whole brain radiation and/or chemo might be on the table. I am afraid of the cognitive decline with WBR. I really struggled during IV chemo too, so I hate to revisit that again. I'm feeling really discouraged right now. I would really like to hear from others who have been though this.
I'm wishing the best for all of us in this terrible situation.
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PS I just wanted to add that I did read mike3121's earlier posts about his wife's experiences with dura involvement and WBR. Also, I have read others posts about their experiences with WBR for brain mets. I guess the core of my question is: is there any hope? Are there stories out there of people getting WBR and going on to live more meaningful months or years with their physical and cognitive function intact?
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I am one of those people who are strong and healthy with my cognitive functions intact now after WBR four years ago and also a local radiation two years ago. I am NED ( no evidence of disease) and have been after mastectomy and original chemo in 2015. The brain met was likely in my brain in 2015 but too small to see because the drugs I took did not cross the BBB. I am strong, able to walk LONG distances and apart from losing the top of my hair from the radiation, I am doing well. I get scans every 6 months and only see doctors every 3 months or so. I did gain about 20 lbs but that was because I added particular foods, beans, spinach, shredded cheese. I also top it off with some high fiber cereal and a few tortilla chips and put on a dollop of salsa with cheese and eat these foods. Found they have made it so I am no longer anemic.
Will I always be NED, most likely not, but treatments are better than they used to be including WBR and it should not be feared outright if you are told you need it. Local treatment of spots of course are preferable but if you need WBR, it is not the end of your life or mental state. Another person who pops in is SusaninSF who had WBR longer ago than me and she is doing well as well.
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mara, thank you for sharing your story and allaying some of my fears. I'm glad to hear that you were able to recover from WBR well.
I'm feeling worn out just from adjusting to what is happening. I'm in the shock and awe phase right now. I see my MO tomorrow. I hope there is a good solution for this. Thank you again.
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Buttonsmachine, it will take a long time to adjust. It took me a couple of years after being officially dx'd with a brain met for me to start relaxing a bit. It is a lot when if first hits you. Hope you get a social worker as part of your team. It is important to have different outlets. There are good threads here besides this one. Have a look around in the different topics. This is a good place to talk to people who understand what you are going through. A social worker can work with you professionally as well. It will take time.
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Hello Everyone,
I thank everyone for your response.
I wanted to share my results for LEPTOMENINGEAL cancer. I only had 2 radiation treatments because I couldn't handle it. I have ben on Capecitabine 2000mg daily, Tukysa 600 mg daily, Kadjinti every 21 days. My new scan for October 2020 shows no cancer! I have no cancer anywhere in my brain. My Oncologist didn't wanted to put me on these treatments. She instead told me to call hospice and contact palliative doctor. I begged her for this treatment and she has told me that the treatment studies were only done on patients with 10 radiation treatment in order for it to work. And she said "even with 10 radiation treatment, patients only have 40% cancer reduction."
I stopped Keppra and Dexamethazone without telling her. I started to take CBD oil and MSM supplement. I had no longer emotional disturbances from Keppra and no longer Dexamethazone side effects of gaining weight, red round face, stomach burn and eating a lot of sugary things. As soon as I started CBD oil supplement, my liver enzymes went down. My liver enzymes are doing great on these three drug combination so far. She wanted me to stay on Keppra and Dexamethazone but I didn't. Because this is the same doctor that told me I was going to die in 2 months and that I should not get any treatment and just call hospice and get my affairs together.
I did my own research and I did begged her for the treatment, literally I put my hands together on the air as if I was praying and begged her and I said "can we at least try for a month to see if it could help me just a little?" after begging her for weeks, then I get the treatment and she still said "I don't think it will work for your brain, but it may help with bone metastasis."
Has anyone had clean Leptomeningeal scan while on these treatments? I did lot of research "scholarly papers" on MSM supplement. I also did research on CBD oil for cancer treatment and seizure prevention. Watched a lot of documentaries where researches suggested MSM supplement destroys cancer cells. NIH study that were done a few years ago. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53729...
MSM is supposed to be helpful for inflammation of the joints but it also works for cancer.
Can you share your experience of Leptomeningeal disease and how your scans are or were?
thank you and God bless all of you and help you in your journey
Love and Peace
Star
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Starlove, wow, great results but I’m sorry you had to beg for, that’s terrible. I’m currently awaiting results from a MRI to confirm or rule out lepto, this is my 3rd scare. My MO at MD Anderson was a lead in the trial that got the the H, X, T combo approved, I started it 4 weeks ago at her recommendation, although I’ve never had WBR. Since Xeloda and Tukysa cross the BBB, I’m hoping for some success too. I am grateful and inspired by your good news, thanks for sharing!
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Hi everybody, I hope you all are doing okay.
Just wanted to give an update on my mom. It's been 3 weeks since she's got home from the hospital, everything seems very different. She can't do the things that she did before. Me and my dad have to do the cooking and the cleaning. We don't mind but it's such a drastic change from before. My mom doesn't really feel like eating and my dad has to pressure her to eat something so she can get her strength back. She has been having an attitude lately, she get's very annoyed when my dad ask her about things. Like does she want to eat or how is she feeling? She also has been crying alot before she got sick I've probably only seen her cry once but she's been really emotional. My dad tells her not to cry and she should be thankful that she's alive but I don't think he understands how she feels.
When she give's him an attitude after a while he get's very upset and argues with her. Which I think is very unfair since he's not in her situation.
This is the sickest she's ever been since she first got diagnosed. She has been very sick and even threw up a couple days ago. She has this really bad cough and we don't know how she's got it and she sleeps for most of the day. She can't shower or walk by herself and the cancer has spread to her liver. I don't know, I feel that she may be giving up.
I'm sorry if this feels personal but I really don't know what to do or think. I'm only 19 and this situation is really hard for me.
Ironic
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Ironic, I’m sorry your mom is having a tough time and while I can’t presume to know how she feels, I can give you and your dad perspective on how I and many others have felt recovering from brain radiation or surgeries.
She probably doesn’t feel like eating, things taste bad or nothing sounds appealing, so asking and urging repeatedly, even with good intentions is frustrating and annoying.
Seeing her family struggle with questions and chores is likely difficult to watch and I have felt like I can’t get a brake being bombarded with questions, I’ve also wondered if my husband will manage without me and felt like he should naturally know more about keeping house.
She’s probably scared and worried if she’ll make it through this tough time but doesn’t want to burden you all with worries, it’s always time to be patient and kind, but especially now, no arguing please.
On you worst day, you can’t begin to image our struggles, mentally and physically. Try to support her as best you can but be very careful not to treat her like a child or invalid, cancer meds can make us cranky enough.
Maybe you can entice her to being a bit more active with a favorite snack and a favorite movie but at home, do she can still rest.
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LFF,
So excited to hear that the Tucatinib is working on your brain mets! I hope they have figured out how to treat your anemia so you won't be in the hospital for so long.
Got my scan results this morning and I am "overall stable" on Trodelvy. Start Cycle 13 on Thursday. Haven't seen the actual reports yet. Will keep Tucatinib in my pocket if I start to experience progression in my brain.
Hugs, Susan
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Susan, congrats on stable 🎉
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Spine MRI was negative for leptomeningeal disease. I was prepared but am very relieved.
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Hello. I had 10 sessions of WBRT back in August and the side effects I went through were lack of appetite, loss of muscle mass, weight loss and extreme fatigue. Your mom must be going through these as well so please try and understand her. No amount of encouragement will get her to eat. I wanted to eat but just couldn’t. I survived on drink supplements recommended by the hospital dietician. Maybe your mom could ask a dietitian to recommend drink supplements. I drank Prosure, Supportan and Ensure Gold with HMB.
I am feeling much better now. I have gained back some weight and am eating normal food although not the same quantity as what I used to eat prior to WBRT. I still drink Ensure Gold with HMB twice a day.
Has your mom’s radiation oncologist prescribe Memantine to help in her cognitive function? I was prescribed Memantine (which is for dementia) to help retain cognitive function. I guess it is working because my brain is able to function properly.
I am due for an MRI on the 14th so we shall see if the WBRT worked to reduce or hopefully eradicate the lesions in my brain.Maria
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My Miracle, I am glad to hear you are doing better and recovering. Good luck with the MRI, keep us posted about how WBR worked.
Mae, so glad to hear you were negative for leptomeningeal disease.
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Hello Everybody
Thank you illimae and MyMiracle13 for the Advice .My family got some news yesterday about my mom, and it's not too good. Like I mentioned in my previous post, she has not been doing well, and Yesterday my dad had to take her to the ER after talking to her doctor. The doctor told my parents that her body is not doing well under the chemo, and her cancer has spread to her spine, liver, and I think one more tumor in her brain.
They say for her to continue, she would have to be 50% functioning, and right now, I guess she is not. They said to continue to give her the chemo it would make everything worse for her and that if it was working then the cancer wouldn't have progressed. They were going to give her one more treatment today actually but with the way she is now they just decided not to. It was the last chemo they had for her also. So, they told her they're stopping her treatment and now her doctors are recommending that she go into Hospice. She was crying yesterday and today because I think she feels she's about to pass away. She never heard of the word hospice before and she thinks it's something you go to when you are going to die.
My dad is trying some natural things in hope of maybe if the chemo didn't work that it could be beaten naturally. Although she has been a little better shes not coughing anymore and she eats more now. I think it was the chemo causing the really bad side effects.
Ironic
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Ironic, I’m sorry to hear about your mom’s situation. There is a test they can do to see if her cancer might respond better to a different chemo drug. I don’t recall the name but it might be worth asking about. And yes, hospice is generally where they keep you comfortable until the time comes, it can be at home or an outside facility from what I understand. Damn, that’s a hard thing to hear.
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Illimae,
So glad you tested negative for LM in the spine!
Hugs, Susan
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Ironic,
Have you gotten a second opinion? Oftentimes one treatment can really turn things around.
Hugs, Susan
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Hi ladies I am going to cross post this...I do not (as far as I know have brain mets) but I am worried... I am on Erubulin/Halaven...I just am completing my 6th cycle. Lately I feel like sometimes my one leg gives out...?? I don't know if its just that my legs are weakened because I have not worked out in over a year and now they tire easy ...like yesterday I had to do a lot of shopping and cleaning and cooking and I was on my feet for a long time...my legs did feel tired and it happened like twice during the day...I am getting scared that its mets in the brain. (I do not have HER2+ ...I am ER+ HER2-) I just had a PET scan and also MRI of abdomen and I have mets at C7 but nothing in Tspine or Lspine....I do have mets in Sacrum...on the left (always have) but its not always the left leg that gives out actually its the right....its does not happen everyday either only happened a few times... but I read someone say that could happen from neuropathy but I have not pain in feet or anything? Any ideas?
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Nicolerod, Leg weakness could be a symptom but with the absence of other symptoms, I suspect it might not be brain mets. Obviously, I’d mention it to your MO and try to get a brain MRI to confirm.
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NicoleRod, my suggestion would be the same as Mae, report to MR and request MRI. Another suggestion I can recommend is to us the leg that is giving out and take a step on it.
I used to have a much weaker right leg that would drag, not give out, but it dragged and caused me trips and falls. The leg was weaker because I always took the stairs with my left foot. I also fell in my apartment because there is a slight rise in the floor. I took my step bench and put it between the living room and kitchen and conscious use my right leg all the time. Now when I walk, it is easier to make sure my feet are lifted because the right leg is much stronger than it used to be. If you have stairs at home, hold the railing and just do some stepping up to strengthen the muscles. It is not going to hurt anything to strengthen a weaker leg. Would not hurt both legs to be worked but work on the one causing more trouble for you right now. This will not change getting investigated, but give you something that will help it in the mean time.
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NicoleRod- it could also be a side effect of a medicine you are on. I know my stability is much improved now that I s add m off steroids.
Also, have you had labs recently? When my hemoglobin drops I get wobbly legs.
I agree with everyone in that you should have it checked out.
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Hi, SusaninSF The night my parents went to the ER the doctor told my family that they could get a second opinion if they wanted to but with the way she was then they doubt she would have been accepted for treatment.
It has been a rough couple of days. Maybe like 4 or 5 days ago, my mom was unable to hold a conversation and could only say yes, no or IDK and she was not very mentally aware. At that time my mom was not taking the steroids the doctor prescribed for her brain swelling as they are not supposed to be used long term and my dad decided to give it to her. Since then she is able to hold an actual conversations and she is more aware. My dad said that the doctor only gave her a couple of days or week to live. But she seems alot better now so maybe they're wrong.
She has also been admitted into hospice as the doctors stopped her treatment. Since the tumors spread to her spine, she has immense back pain to the point of crying and was given morphine to help. The hospice people said to give her 7.5 ML every 3 hours but me and my dad only give her 6-7.5ml every 5-7 hours or whenever she hasn't had morphine for a while and is feeling pain. The hospice workers found out we are not giving her the recommended dosage and is making us create a log. Me and my dad don't see the point in drugging her up if she is not feeling pain.
My mom still struggles with doing basic things like showering by her self or walking without a walker. Sometimes she has an attitude if my dad checks up on her too much.
A family friend recommended going to a Chinese doctor for some traditional Chinese Medicine as she knew or heard of a guy that went there and the tumor that he had went away and has not been back. My dad wanted to try all options so he went. My dad spent 300 dollars for some herbal leaves and other thing to make a tea with and they also gave a liquid to put on her breast lump to make it go down.
I am very skeptical of these type of things. As I'm not to sure if these remedies even really work. People like to prey on others when they are desperate and it makes me worried that they gave us something that probably doesn't even work.
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Ironic, sorry for all your family is going through but glad your mom is doing better right now.
I do have some reservations about alternative treatments, not necessarily because some don’t work but often because claims are made without a proper diagnosis. For example, a tumor that went away may never have actually been cancerous unless confirmed by biopsy first. This type of thing happens a lot.
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Hi All, have any of you had eye swelling due to brain or dura mets? Every morning lately I wake up with really swollen puffy eyes. The swelling goes down a bit through the day but is still not normal. Some doctors are saying allergic reaction to a medication, but others thought it might be related to the cancer in my dura. I don't know what to think, but now I'm swollen and in pain and afraid to take anything much besides tylenol. I see my MO on Monday. This is definitely one of the "bad" days. Thank you for any insights or experiences.
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Hi Ladies,
Just devastated with the news that I received from the radiographer today. He said that the whole brain radiotherapy that my mum received on the 22nd September 2020 did not work. Recently she had a CT scan which showed that she has swelling in the brain again. They are refusing to do Gamma Knife and have said that she’s not eligible for it as she has 7 mets in total (largest 2cm).
Has anyone had similar experience to this? I really want to look into this privately and see if my mum would be eligible for Gamma Knife.
Rhahima
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