Brain Mets Sisters
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Dear Brain Mets Sisters
So I had the WBRT two months ago now and the first six weeks it seemed as though it hadn't really done me in but week 7/8 the exhaustion anot loss of apetite thing kicked in - I don't feel ill but frustrated, those of you who are WBRT veterans, (and I am so cheered up by how many of you there are) how long did it take for normalish energy to come back and any top tips for managing the exhaustion - I'm thinking I will make myself walk again tomorrow - I usually walk a lot but this week I've been only showering cooking unpacking (just moved house which might also be why I am tired). Energy drinks? CBD? What has helped you please and thank-you all for being here.
Kathy
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Kathy,
I felt completely fine during treatment but a month out, which I think is where you are, I hit a wall and spent all day sleeping. Unfortunately, it coincided with a trip with friends and family to Hawaii. I think it lasted about a week, maybe less. After that was over, my appetite and energy came back. My hair grew back. While my advice in general is to get up and get moving, in this case I felt like just sleeping through it was the best. Listen to your body. This difficult time will be over soon.
Hugs, Susan
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Kathy, I am similar to Susan in how it worked. I was an emotional wreck for the first few weeks after but not physically. I was still eating and active. After about 5 weeks or so, my appetite went away and all I wanted to do was sleep. In my case I blamed the steroids for messing up my system. After two to three weeks of the not wanting to eat or move, I suddenly put on youtube and just marched and my appetite and energy came back quickly. Everyone is different but the exhaustion a few weeks out is fairly common for a lot of us but once we start to recover, we usually bounce back fairly quickly. As Susan said, if overwhelmingly exhausted, sleep it off as much as possible to rest up. I survived on boost shakes as well since food turned my stomach. I had to get calories from somewhere. I would mix half boost, half regular chocolate milk.
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Hi everyone hope everyone is doing well. I am new to this group and wanted to get some advice on new treatments for triple negative breast cancer that has spread to the lungs, chest wall, right and left axilla and now brain.
I am writing on behalf of my mum. She was recently diagnosed with stage 4 breast cancer.
She currently has 6 mets in her brain the largest is 2cm and 5 smaller. Any suggestions on brain barrier drugs that may be used to help treat the brain mets. She is currently undergoing whole brain radiation, I'm not sure how effective this is.
I look forward to hearing from you all.
Take care
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WBR can be effective on brain mets. I had it 4 years ago as I let you know before. Hope the same for your mother. When it comes to particular drugs for crossing the blood brain barrier, I am not familiar. I know that some of any chemo treatment she receives would cross for a little while due to the whole brain radiation, not sure how much or how long.
A good resource that you should look up is http://brainmetsbc.org/ It deals specifically with this subject and should provide some information about different drugs. You can also do some research to her treating doctor about on google. If you put in her type of cancer eg triple negative, hormone positive or HER2 +, you may come up with some lists of drugs that cross BBB. Google can provide some drugs to ask a doctor about. Information about your mother's type of cancer would be helpful to add to the profile you made for her, kind of cancer etc as it is hard to provide context for drugs without knowing what kind of cancer, has it spread else etc. I still reccomend the brainmets site above and google for what kind of drugs can treat particular stage 4 cancers and ask her doctors. Good luck
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Rhahima,
I haven't been on it but this combination was recently approved: Tecentric + Abraxane
I have been on Abraxane and it was very effective with minimal side effects.
How old is your Mom and how is her general health? I had a good experience with whole brain radiation but I was 50 and very fit and healthy. Did your Radiation Oncologist discuss Gamma knife or Cyber knife since she only has six brain tumors?
Hugs, Susan
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neratinib crosses the blood brain barrier but had some side effects that aren’t great ( mostly diarrheal).
I sm on Tukysa and that crosses the blood barrier and had had good results with lesss side effects. tykerb and xeloda used to be a combination that was used.
they are finally getting drugs that cross the barrier. It’s good news.As Susan mentioned, I have had good results with gamma knife and cyber knife radiation as well.
Hugs to you and your mom
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Mara51506 - Just to give you an update. Finished up my brain radiation on the surprised brain mets. It's been a rough couple of months with two hospitalizations with a WBC of 1000 after my first round of Erubilin, then getting c-diff in the hospital (what a mess), then the "you have brain cancer", 10 rounds of WBR and then another hospitalization of 4 days with a UTI. Finally cleared all up and started my Erubilin last week for my liver mets. My CA 27/29 went from 2784 to 900. Unsure if it is from the brain radiation/liver/bone mets. I have scans and a brain MRI October 9th to see what is happening. I still work 40 hours/week from home and took your suggestion and bought a Cubii. It will go under my desk. Can't wait to start using it. I hope to get to 4 years+ like you with the brain mets, since the radiation MD gave me 5 months. Not acceptable. My oncologist said he had someone on Erubilin for 4 years for liver mets. Stay positive and keep on going ladies! Lisa
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Mediclisa, it is very good to hear from you, sorry about the hospital stay and numbers from the Eribulin. Glad you could get a cubii, I love mine too. Put it on a yoga mat under the couch I use it on and put the couch leg on the yoga mat as my cubii was starting to travel. I hope you also get to 4 plus years as well.
I have had ups and downs and do find my continued treatment leaves me exhausted. I can still be very active though. I did walk today for an hour on my treadmill and then 7 miles round trip to and from Walmart for groceries. I made sure I walked steady with smaller steps and kept my breathing slow. Makes it easier as this was a massive physical effort. Getting there was fine, did get a few groceries. Coming home was harder but I did stop at a burger joint for lunch to fuel up and headed home with about 10 lbs worth of groceries.
I was exhausted but glad I got it done. Feeling good now that I have cooled off.
I was also told that I needed to get my final affairs in order when the met was discovered. Due to the fact I have inflammatory breast cancer, had grade 3 and HeR 2 positive, it was the most aggressive it could be. Turns out the chemo and Herceptin worked very well for me due to the fast growing cancer. NED from the neck down since mastectomy and chemo going on 5 years. Brain has been NED since last treated in 2018 as well. I am lucky and I hope you get to be too.
The cubii will help with the exhaustion as well. Again, thank you for your update! Don't listen to someone guestimating how long you have left. Day by day should be how it is handled. Even if you do figure out some things if the cancer took a turn, those are just practical things to take care of to make wishes known, not indicating the end is near.
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Hi everyone, I hope you are all doing well
I just wanted to give an update on my mom. She is now a year and 3 months into her stage 4 diagnoses. She has been admitted into the ER today because while she was at one of her, appointments she fell. Lately, she has been feeling a weakness in her legs and has fallen twice and was not able to get up without assistance. The doctor thinks it's either the Tukysa treatment she is on causing this, or they have noticed a tumor in the back of her brain that may have caused this also. They have not given a final answer. She is also dealing with a liver problem that Tukysa may also have caused but she has not gotten her results yet.
Have any of you dealt with severe side affects like this before.
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I haven’t but I’m only 3 weeks into Tukysa. I’m sorry to hear your mom is struggling with side effects. Do her docs have a sense of how it’s working on the brain mets?
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Hi Illimae, I'm glad you are not experiencing any side effects.
She was actually supposed to be taking an MRI today for her brain mets. I do not know if the accident happened before or after she did it. She did tell me they are keeping her there for a couple of day. So, we will probably know if the tukysa is working or not soon.
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Hi everyone,
I just wanted to give an update on my mom. She came back from the hospital on monday and I guess we have good news. The weakness in her legs were not caused by the tumors spreading to her spine or the new chemo she was on. My mom was given a steroid to help control swelling for her brain tumors and it was causing her side effects. Now unfortunately, she is not able to walk without a walker and can't get up without help. Although, her doctor told her this is temporary and with a therapist will be able to walk by herself again in a couple of weeks to months.
They will be keeping her on the steroid but I'm glad it wasn't worse than I thought.
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update: i have stopped treatment. Due to lack of appetite and i lost 20 lbs in 2 months. I just don't like the food feeling in my mouth. I have also felt so weak that I've been wheelchaired around. I tended to vomit when I took my tukysa but also diarrhea. The diarrhea got worse when xeloda combined with tukysa. I also got H and F which doesn't bother me since I'm not very active right now. I feel extra exhausted. Hopefully 2 weeks off will let me recover.
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Ironic, glad to hear the update on your mom.
Seilien, sounds like side effects are serious for you. I am so sorry to hear what you are going through. Hope they get that vomiting and diarrhea under control. Definitely a treatment break to recover a bit is in order and some medication needs to be added to help with the nausea before or after the tuksya and diarrhea meds. Though if you cannot eat, your system does not know which way is up. I hope things ease up soon and sorry things are going so poorly right now. Rest up.
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Thanks very much to thosee who posted re WBRT and energy - and you were right,slowly but surely my energy is coming back, although early nights might be a thing for a while - this thread is incrediby helpful - much appreciation to those of you who support and help so much, I will try and join in that activity and not just ask questions
Kathy (France)
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hi
this sounds so like my mum. She is stage 4 inflammatory BC diagnosed last August!Brain mets diagnosed in April! Had WBR and now on Xeloda and Lapatinib!
Had to stop due to shingles for 4 weeks! Don’t think anything worse could have happened! She still hasn’t got her balance back, needs assitance to walk, sit up or do anything for that matter! Her appetite is also very poor! I feel so angry because I really don’t no what else we can do! Any help is appreciated x
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hi. I finished WBRT on September 4. Experienced fatigue, loss of appetite and loss of muscle mass. I also lost weight. I drank Ensure Gold with HMB twice daily plus Supportan at mealtimes as I couldn’t eat proper food. Now I am eating much better and have gained weight. I still suffer from fatigue some days but tolerable. I was hoping that after a month, the fatigue would go away but it seems like it will stay for some time. I am on very low dose Xeloda 500 mg twice a day. I don’t suffer from side effects except some days but few and far between.For those on Xeloda or other chemo and experiencing bad side effects, ask your onc for lower dosage. It might be better for the body.
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My Miracle, glad to hear that you came through the WBR and that you sustained on Ensure and are now able to eat, that is a big part of recovery. The fatigue for me lifted after about two months. I was able to deal with it better once I started walking, first on the spot indoors then outdoors. After getting good food and exercise, the fatigue returned to a post WBR level. I still have fatigue on my Herceptin but it is more manageable and exercise and early to bed helps a lot. Glad to hear you also found a way to deal with the Xeloda as well.
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hi not sure where to post this so trying here.
I’ve been losing vision in only right eye and then it comes back after a few minutes. The latest is my right Upper lip has become tingly and numb a little. Could these be a sign of brain mets?
Thanks
D
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Hi,
Hope you are doing well. Sorry for the late reply. My mum had whole brain radiotherapy three weeks ago. She had very bad SE. She is currently at hospital due to her SE. She has a total of 7 mets (largest 2cm) the rest around 2mm-9mm. We are waiting for her brain to stabilise and are thinking about Gamma Knife treatment. Do you have any experience with Gamma Knife treatment? Also did you have any bad SE. My mum is 55 years old and generally she was fit and healthy.
Look forward to your reply.
Best wishes, Rhahima
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rhahimalove, I’ve had gamma knife 4 times. Each time successfully killed the mets over time and I had no SE’s. The only bad part for me was the head frame used to secure the patient to the table, it’s tolerable but very scary at first. They do numb you before tightening the pins but I’m afraid of needles, so it was upsetting for me. Sometimes a mesh mask is used but that can be scary to if you’re claustrophobic.
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I agree that for the gamma knife that I found the metal mask to be kind of uncomfortable but it only took about 5 min but it was jarring.
Update: i was taken off xeloda because the SE were too strong. I still havent eaten in 3 weeks. We are still trying to figure out what's wrong with me. Ive been off 2 weeks already, i also still have hand and foot syndrome. My skin still very dry. At least no more diarrhea.
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well tucatinib ( tukysa) seems to be working. Only spots listed are in areas previously treated with gamma knife or cyber knife. RO says what was reported is just scar tissue. I’ll take that:
currently back in hospital for anemia but get to go home tomorrow after 3 units of blood/ hemoglobin was 5.4 today. CT scan from head down You n Sunday. Then I’m done for a bit ( I hope).
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Hi, I've been metastatic for 5 years, just 1 in liver and 2 in bones.
I started experiencing nausea about 2 months ago every now and then. I now have it several times a day, some days much worse. It's not related to food. I sometimes wake with it and sometimes retire with it. I have not actually vomited yet. Some days I've had to lie down because my head is so "heavy" and reclining in the armchair is not enough, I need to lie flat. I was started on maxalon three times a day, 9 days ago with only minimal relief.
I'm HER 2 positive. I saw my onc today and she has ordered a brain MRI. My recent routine CT was NAD in brain. She said CTs only find larger brain tumors. She said if the MRI is clear and the nausea persists I will need a Lumbar Puncture to look for leptomeningeal disease.
Has anyone here had similar symptoms which resulted in a brain met or leptomeningeal diagnosis? Thank u for any replies.
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I was dx'd at Stage 3 because my CT scan did not show any brain mets upon dx of cancer. I was treated for neck down with mastectomy, rads to breast wall and of course chemo and Herceptin.
I started getting progressively worse morning nausea and head pressure which caused my eyes to distort at times. I thought I was dizzy and the nausea would go away. However, I started being unable to always complete a call (worked at home for a call center). I would lose cognition or not understand what a phone number was. Sometimes I had a seizure and my workplace would ask my mom to turn off the computer. Went back and CT scan found a 10 cm tumour at the back right of my brain. All seizure and morning nausea were caused from brain swelling related to the tumour. CT never did find issues, even when I passed out in the back yard after being finished chemo, which turned out to be a seizure. My MO fully believes I was actually stage IV from the start given that drugs don't cross BBB and cells or lesions that are too small would not be picked up.
It may be possible to be either LM or mets. Please do let us know what it turns out to be. Do remember that other things may cause issue to and ask MO about it. It is prudent to check but MO should advise what else to look for. Hugs going out to you.
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Hi Ilimae,
I am glad to hear that the brain mets have been treated successfully with gamma knife. My mum has triple negative breast cancer so unfortunately she has no drugs to treat the brain mets, our only option at the moment is gamma knife. Have they given you any blood barrier drugs to treat the mets?
Rhahima
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rhahimalove, yes, I’ve recently started a new combo of Herceptin (HER2+) and Xeloda & Tukysa (pills that cross the BBB), I see how they’re working after my MRI next week.
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Mae, how are your side effects with that combo of drugs you are on since it could be a possible combo for me if/when my brain eventually progresses? If you have them, have you got coping strategies. Just thinking ahead.
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Mara, I'm struggling a bit with the Xeloda, I started with the highest dose and reduced it once but want to reduce it again. The X causes nausea, vomiting and food is lacking any taste, which I particularly difficult since I only recently started eating again. The vomiting is hard but it seems that not many people have this problem, I'm taking promethazine for nausea, it's helping so far. The Tukysa causes diarrhea but an Imodium works. I feel fine on my week off Xeloda, so I just need to find the tolerable dose. I have a brain MRI on Monday, so I'll know soon if it's helped or not.
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