Brain Mets Sisters
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I have had a low grade headache for the past 3 days. Saw my MO today for my normally scheduled meeting. I tild her about it. We both agreed that it is probably that the lesions in my brain which we haven’t actively been treating for obeec6 months are likely the reason. I started low dose steroids to see if the headaches go away. No other symptoms.
I don’t know how I feel about everything. Yesterday was my 7 year anniversary of my etaststic diagnosis. So many emotions.
I travel to CA on the 16th to start the trial. I’m trying to stay positive but I am feeling really drained.Hope everyone is doing wel
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leffoodfor:
I know exactly what you feel, sometimes you get so tired of all this medications.....I am going my self through very tough times .... I get very desperate and depressed.
The only things we can do is move forward....be strong in bad times.... You had accomplished so much..... Hang in there....my friend we are all togueter in this fight.
God bless you all
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LFF, I am sorry your brain is causing you problems right now. I am glad to hear you are starting the trial and am not surprised you are so drained with everything going on. I can empathize about the 7 year being quite impactful for you. I am not at 7 years but come 2020, I am 5 years on. My own MO said I had to be Stage IV from the start and the brain bastards were just cells in 2015. I feel lucky for still being here in relatively good health but sometimes wonder when I will finally fall apart. I don't fear it yet but it never hurts to keep it in the back of the mind.
Good luck on the trial, I hope it is helpful and I hope the steroids ease the brain symptoms. Warm thoughts being sent your way.
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TopacioJoined: Nov 2018Posts: 28Latest activity: Dec 4, 2019
good evening everyone
Hope everyone is doing well.
I looking for some information
I was in the CLIMBHER2 trial witch was a blind drug( tucatinib )Plus :Herceptin and xeloda.....
To be honest I feel like Xeloda didn't help
At all because my Tumor didn't strink and also last month actually grow....I got radiation 5 times high dosage ...to try to control it.
Anyway I saw my doctor today and she said that the trail going to unbling the patients to see who was getting the tucatinib drug and then they are going to offer to me if I wasn't take it... but I have to wait .... We don't know how long is going to take and she is offering me this drug: DOXORUBICIN or Adriamycin.... That is a chimo drug And I possible going to lose my hair.
So I wonder for any other patients that had gone trough the same that lives in Ontario Canada if they have other options or info that can help me
Thanks in advance!!!
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LFF, I'm sorry to hear you are struggling right now - it's understandable!! I hope this trial is successful for you and zaps the bastards once and for all. Much love to you!
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Hi Left, I went to City of Hope in LA last week to get second opinion. The doctor is her 2 specialist. She told me that she is going to have a big meeting in this month and there will be some new drugs come out, one of them actually will be approved by FDA in the next couple months, which can cross blood Brain barrier . She is very positive that will be approved . She told me just follow the news. That really gave me some hope. I understand you . This is so hard. I am so tired of this.
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Malinda, there are quite a few drugs coming that will cross the BBB. I too am also hopeful to remain stable until that time comes myself. I am glad that you have found some hope and hope things will ease up for you soon.
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Congrats LFF!
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finally officially in the trial.
Now waiting to se doctor and get new meds.
Let the readjusting begin.
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glad you are in the trial LFF
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Yay leftfoot, hoping for good results
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Great news LFF!
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happy holidays
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Merry Christmas, Happy Hanukkah, Kwanzaa and all the holidays I am missing to everyone here. Hope it is a nice day for everyone.
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😆😀
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I was directed to this thread.
Hello to all of you brave and inspiring people.First I want to thank all of you so much for you stories and feed back. It has helped tremendously.
Second I would like to introduce myself. My name is Scott. My beautiful wife Shelley was diagnosed with metastatic breast cancer in March of 2018, from the start. I have been step by step with her though this journey. I just decided to join this group because of the turn her cancer has recently taken. The fear and anxiety is sometime so overwhelming for my wife and I. I would like to say I understand, and that we can get through this. But to be frank, I have no idea what she is going through. I can't even imagine what this is like for her. All I know is that I am the one who gathers information and does the research. Some of which I didn't want to know, but am grateful for the knowledge. I study as much as I can so that when she is ready to know I am giving her valid information.
I put all of her information, diagnostic, treatments and status on my profile so that any help, any of you can offe, is based on her status.
Where we are? Shelley has had 4 lines of treatment starting her fifth (Havalen) in two weeks. Last week after pressuring her Onc for a brain scan Shelley came up positive with 3 brain Mets. The biggest is 1.25 cm and has minor swelling. One is 2 mm and the other is the same but is really close to the lining of her brain. She has her first stereotactic radiation therapy today. We are both really scared due to the uncertainty of this new path on this journey.
What I would like to know is this. What is she in for with the radiation? SE and how we'll see might recover. Will it impact her cognitive function? She is scared and so am I. Any helpful words are more that welcome.Shelley and I have complete Faith in our Lord and Savior. He has provided much of our strength to get though this time.
Thank you again for all of you.
time for her first treatment.0 -
Bless your heart, Scott. Hopefully someone with some good knowledge of radiation will jump in here soon and give you some helpful and comforting information. I'll just leave you with this beautiful thought from our Lord, and me, to you and Shelley....
"The Lord bless thee, and keep thee
The Lord make his face shine upon thee, and be gracious unto thee:
The Lord lift up his countenance upon thee, and give thee peace." (Num 6:24-26)
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Scott- sorry you found us.
Hopefully she won’t suffer any Side effects fro her treatment today. sge will be tired gir a few days but stereotactic radiation is so precise, normally there are minimal side effects.
I can’t really say without knowing exactly wher the rumored are and if they are effecting anything.
for reference,I have had 5 gamma knife treatments to my brain over 7 years and am still here. They have treated over 40 st pots in my brain.
There is hope.
Feel free to PM me questions.
Hoping that theses lesions will die as Nd nothing new crops up.
There are several new medicines in trial that are about to be released for metastatic brain cancer designed to hi across the blood brain barrier, so I am very hopeful for both your wife ‘s and my survival.
Hugs
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Scott, I have been through both whole brain radiation and also had some local treatment as well 2 years after.
For myself, I had no issue with the targeted radiation or low dose steroid that it needed. I found it was easy to tolerate and I was able to function normally with little side effects. Definitely, targeted treatment is much easier to tolerate and is known to give some good results.
I am still stable from both neck down and also brain as well as of my last MRI. This is almost 2 years. Never had mets anywhere but the brain. Keep hope alive. I have been dealing with this for going on 5 years in 2020. I have the most aggressive form of breast cancer but I am still here in relative good health. Stay physical active, even if it is walking, incorporate strength training. If you already do exercise, perfect. That helps tolerate side effects and just keep you in good shape. Good luck to you.
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Mara
Thank you for the wisdom. Shelley has been super fatigued. Sleeps a lot. Been a week since her last chemo. (Piqray). Dr took her off it. It did nothing for her other Mets. Liver mets double in size over a 6 week period. Moving to IV the week of the 6th. (Havalen). Bones are stable.
She has been experiencing night sweats bad. Not sure how to control them.
Day by day e carry on.
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Not too sure on the night sweats. Hopefully the change in drug will take care of the night sweats for her. I found this article with some non-estrogen meds listed as well as non drug assistance. Link will be below
Hopefully the new drug will help with her other mets and the fatigue as well.
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Hi everyone,
I'm having gamma knife radiation to my leptomeningal mets on the 6th and was hoping someone could help clear something up for me. My radiation oncologist said necrosis is a possible side effect, but what actually causes necrosis? Is it too much radiation to the spot killing healthy brain?
Sorry if this is a really dumb question, Google wasn't much help to me.
Thank you
Ally
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Mara. Thank you for the link.
Will check it out.
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Scott, I'm sorry you and your wife find yourselves here, but please take comfort in all the support and knowledge on this forum. I had gammaknife radiation coming up on 5 years ago to the tumor bed after a craniotomy to remove the met. Like others mentioned, the only real side effect from it was tiredness. I didn't notice any cognitive issues.
I've struggled with night sweats as a result of my meds too. Unfortunately there's not much we can do to control them...I keep a container of ice water beside the bed, use a cooling pillow, and sleep with the window cracked. All of these help but some days are worse than others. I've found certain foods tend to trigger more hot flashes for me, so I'm really aware of what I eat in the evening in an effort to control the night sweats.
You and your wife are in my prayers.
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Goodie16
Thank you so much. Shelley slept on the couch last night. First time in a week she didn’t sweat herself to a freeze.
To all. I want to thank you all for all your support. I am grateful to each and every one of you.
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Scott, I am glad Shelley got some well earned rest without the sweats.
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Hi, everyone.
I've posted in this sub-thread a few times over the last two years when my younger sister's metastatic breast cancer spread further to her brain. I wanted to let you know that she passed away three weeks ago at the age of 37. I am so grateful for the support, encouragement, advice, and understanding so many of you have shared in this space over the last few years. It meant a lot to me and to her. I hate the devastation this insidious disease causes for so many families. Wishing you love, peace, and health for this new year.
-Dianne
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dizzy see- I am so sorry for your loss. Another person taken way too early. Thank you so much for letting us all know. You and your family are in my thoughts.
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Dizzydee, I’m sorry to hear this, may she RIP. Thinking of you all and wish you a better 2020.
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