Brain Mets Sisters
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Last time I checked in I said they had found a 2.3cm lesion in my brain. 3 days later I had a craniotomy and they successfully removed the tumor. I had 5 gamma knife sessions a couple of weeks later. It appears we have managed to stop the spread in the brain for now but being off chemo allowed my lung mets to grow during that time and brought a whole lot of other issues. I had to change chemo regimen also. Working on stabilizing all that stuff
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thinking of you Dya. One thing at a time. Sounds like you took care of 1 thing and are on to the next. Sorry that you continue to have to adjust. Hugs to you.
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Dya, I am glad the brain is stable now and hope that you get used to your new chemo regimen and limit SE that go along with it soon. May it shrink those mets.
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Leftfoot, I wish you great success on the new drug. My MO was involved in the trial and did a presentation on it at SABCS. We discussed it at my last appointment and while it wasn’t fully approved at the time, she was really excited about it. I’m thrilled with the potential for brain mets.
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Good luck to all of you ladies going thru this with brain mets and radiation.
leftffootforward I'm wishing you the best with the new drug !
ive got my scan comming up this wends and I'm a bit apprehensive about the Mri machine being cleaned . They check every year on my brain to see if it's still there ! Humor makes things light . anyway I'm going to start sending prayers and reiki to this group . I am a reiki master and feel Reiki has helped me recover . Anyone who wants to receive it I'll add your name to my list .
I also do a long list of supplements and other alternatives. I abstain from suger and am a vegetarian. All of this has helped me to stay well .Anyone wanting prayer or reiki just send a private message . wishing you all a return to stability and wellness !
Marcia
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Good luck on the new drug LFF!
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LFF,
So happy for you! And you won't have to travel! Of course, I miss you, but glad you don't have to expose yourself to possible infection on an airplane.
I'm crossing my fingers too. Best of luck with your specialty pharmacy. I had to battle with CVS Specialty Pharmacy and they wouldn't back down. Hope you have a better time with yours.
Keep us updated on how it goes.
Hugs, Susan
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LFF so glad you are getting to try the new drug. Lots of prayer for success!!
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Having the hardest time wrapping my head around ‘how long can I live with brain Mets? Or when will the next one show? Because once it’s up there, it will only keep on spreading like fire. I feel so anxious/defeated. Maybe it’s the hair loss going on from radiation, or the anxiety from the being in quarantine for almost 2 months now, but my days feel heavier. I have been exercising daily, cardio, yoga, walking, biking. Anything to keep me feeling okay, but when nighttime comes, the dark thoughts just creep in. I had my first TDM1 treatment this week. I feel great, really. I just wish I could be at peace at least 5 minutes during the day. Thanks for reading. Xx
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Roro, can you wear earbuds at night?Can you listen to some peaceful meditation music that would play all night. I used to have trouble sleeping all the time, especially on the steroids and tried youtube meditation sessions. I like the one where a person talks you down to being calm and then can go to things like rain sounds or gentle music. I like Honest Guys talkdowns, I like Minds in Unison. He has some where he talks down and says stuff all night long. They have them for sleep, depression and anxiety other things as well. It is very calming and I feel it is quite relaxing.
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Roro,
We have all been there. And we are here for you. Mara's got some great suggestions. If that's not your thing, have you tried medicinal marijuana? I've always had night time anxiety. Ironically, my biggest source of night time anxiety used to be outliving everyone I loved and being alone. Don't have that one anymore!
For awhile after diagnosis, when I woke up in the middle of the night or before falling asleep I'd be terrified of what was ahead of me with MBC. Not so much afraid of death but worried about the path there. Also, worried about leaving my kids who were already dealing with other peer pressure/social issues. The period after mets diagnosis is the hardest.
More recently, I've had trouble sleeping because of restless leg syndrome. Started because of Benadryl pre-meds with Taxol but continued to come and go after I switched treatments and didn't have to take the Benadryl anymore. It has since gone away and I've been sleeping well even though I had to get back on oral steroids because of my mouth sores.
What you're going through is terrifying, even more so with the Covid situation. At the same time, I hope that the more you learn about brain mets, perhaps from the women here, the more you will see that many of us, after a period of adjustment, live pretty normal lives. Brain mets are likely treatable with radiation sometimes combined with surgery and blood brain barrier crossing treatments.
Lastly, are you seeing a therapist? Most of the cancer centers have therapists who specialize in helping cancer patients.
PM me if you want to talk more on the phone.
Big hugs, Susan
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Hello Mara, thank you for your suggestions; I wrote them down and I will definitely listen to them and report back. I feel like I’ve incorporated all these new things in my life that are so strange to me in a way (better eating, exercise, running); too much in too little time maybe? It’s been a rough two months with surgeries and radiation and just overall a lot of change, I don’t even know who I am anymore, a lot of that comes from the anxiety of the unknown. I will try and incorporate this at night and hope to sleep better and just fell better throughout the day. I’m also coming off the steroids so maybe I’m extra sensitive. I pray so hard for many years to come or better medicine for brain mets. I don’t even dare to say.. a cure for cancer, but God knows that’s exactly what I mean.
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Roro, good luck. Better eating, exercise that you are already doing are half the battle for sure. You are further along than I was after brain radiation in a shorter length of time as well. It took me a LONG time to get in better physical shape and I had a terrible time when coming off steroids. I also am two years out from the last time my brain was treated. Eventually your mind just learns to incorporate everything going on and begins to cope with the new normal. Good luck.
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Hi All,
I was treated with stereotactic radio surgery SRS for a .9cm brain met back in Nov 2018 and my MRIs have been clear for a year and a 1/2, very thankful!
In March there was interval increase in sized of the treated right cerebellar met lesion to 1 cm. Yesterday my May MRI showed growth to 1.2cm. I had hoped the scan was showing necrosis. My Dr at Moffitt reviewed the imaging and agreed with radiology report that is consistent with recurrence. They are recommending repeat radio surgery and will have CT simulation Tuesday.
Dr said it is unusual that the met would return in the same place we treated. I have only had this one met since diagnosis in 2018. The radio surgery went smoothly and l was hopeful this was a one and done.
My PA indicated they only radiate the same met twice, after that they need to go in surgically to remove, After one localized failure, I am scared of another. I have read there is little data on the safety and efficacy of repeat SRS following local failure.
Wanted to see if any other met sisters have had a similar situation of met returning in the same spot treated with radio procedure and what treatment method was chosen, did you ultimately have to have surgery or are there other options?
Thank you Ladies!
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rwhite, I had new growth on the edge of a previously treated (gamma knife) site. For several months it appeared to be radiation necrosis and we watched it. Eventually, the area got big enough that some cancer was suspected to be involved and a Craniotomy was performed. Turns out it was mostly cancer, we assume that a few cells may have survived outside the original treatment area and spread out slowly. The Craniotomy itself was ok but I am dealing with some uncommon nerve damage that paralyzed a vocal cord, resulting in temporary speech and swallowing issues. Good luck.
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rwhite,
I had WBR back in 2014 and then two subsequent gamma knife procedures in 2016 and 2019. The gamma knife procedures were, of course, both in previously radiated areas since I had originally had WBR. The gamma knife procedures were both to places that had tumors before I had WBR. Wasn't told anything about having to limit the number of times I could use gamma knife to the same spot. Have never discussed surgery as a possibility. Radiation seems to work so well with no side effects or down time.
My most problematic area is the same as yours, right of the cerebellum. Tricky because of the importance of that area to balance, coordination and speech. My rad onc has avoided radiating my cerebellum. Even with WBR, she navigated around it.
Illimae,
So sorry to hear about your nerve damage. Hope it is only temporary.
Hugs, Susan
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Thank you Illime and SusaninSF. Will let you all know how the treatment plan evolves... one day at a time.
Have our first grand baby on the way, lots to look forward too!0 -
My last MRI showed shrinkage and stable brain mets, but they keep using words like "extensive" that I could live without. It spread to my liver and the lung mets have grown. I got a liver biopsy (no big deal!!) And found it had mutated again. Now I am HER2 positive so we switch to Kadcyla!
Anyway, I wanted to let you know, SusaninSF, that Gabapentin has helped my restless legs and sleep.
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Hello lovelies, I am not a regular poster because I found it go so hard to see members pass on. I'm reaching out to tap in t o the wisdom that's here among everyoe.. I had SRS done for five lesions in January 2019. A scan in June showed progression in the largest lesion so they retreated. IT was stable and then started to progress. My Feb and recent MRIs have shown continued progression that they believe is radiation necrosis and want me to have surgery as soon as possible. Well my RO said I should just meet with a surgeon while indicating that it can be hard to k now is it necrosis or just swelling and scar tissue. I was alarmed then when the surgeon said surgery asap.He said that radiation necrosis can continue to grow and they don't know why. I am gong for a second opinion but have scheduled the surgery for the week after next. I've been having vision problems and a visual field test showed that I have lost half of my left peripheral vision. The cart showed like a pie and the top left quadrant had no vision.
I wondered if anyone had radiation necrosis after SRS and what approach was taken? Also, for any that had surgery how was it and what was the recover like? I've been told I'll be in ICU for 34 hours and then another day or two in hospital.It's in my right occipital lobe. The Also, do they need to shave the area where the surgery will be done? surgeon said it's an easier surgery than taking something from say the lung but the idea of brain surgery is scary. I see some ladies on here who are so inspirational and have been on this journey for many years, but I am personally feeling weary with dealing with this disease. Anyway, would welcome any information. Hugs to all.
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I can speak to your question on the surgery itself regarding hair. Hair is shaved in the area where they enter. They usually only take what is needed, your entire head would NOT be shaved. Surgery is a common evetn for radiation necrosis. I have not yet experienced it, but that is what is usually done to treat it. Along with that, there is a drug called Avastin that may be used and also hypobaric oxygen therapy as well. RO will be able to tell you. If your MO is taking care of this issue for you, they can let you know. Again, the treatments I have heard of are surgery, Avastin to try and break it up with a drug as well as hypobaric oxygen. Steroids may also be employed to avoid the brain inflammation as well.
I am sorry you are dealing with this as well and hope that whatever they do helps you. There are people here who have had success with surgery, Avastin and oxygen therapy. Not necessarily all at the same time. Keep us posted on treatment and how you are doing.
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Dorimak, I had a similar situation. Last year a previously treated area showed growth and we watched it for several months until the rate of growth and size of the area (about 3cm) became a concern for cancer mixed with necrosis. Unfortunately, both look the same on images but we discussed avastin too and the neurosurgeon thought a Craniotomy was better since there is a 30 day period after taking avastin that surgery can’t be performed (I don’t recall why). Anyway, I had the Craniotomy and was admitted for 5 days, I think. The recovery from the surgery itself wasn’t too bad but I did have a very uncommon complication of a damaged nerve which temporarily paralyzed my left vocal cord. My cancer was located deep in the cerebellum near my brain stem and a nerve got tugged on but not cut. This has greatly reduced my ability to speak and swallow food but I’m managing. There are risks but I understand they are quite rare. Here’s a pic of my head the day after surgery.
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Photo after surger0 -
Dorimak, in regards to the craniotomy, like others posted it's not a terrible surgery and I found the recovery to be easier than the recovery from my mastectomy. I was in ICU for a day and then regular room for 3 days. They only shaved the part they needed to to access my temporal lobe. The hair regrew pretty quick!
Best of luck to you!
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well I had composed a long response to the brain surgery post and it disappeared. So frustrating.,
what I can say is it was my easiest surgery to recover from. The worst part for me was the drugs they put me on ( steroids and seizure meds ) made me feel out of it. I got off of those as fast as I could.The stay in the hospital was fine but I couldn’t focus on anything due to the meds and continuous checking of me. I read bad magazines and comic books to keep myself occupied. I was thrilled when I got to walk the halls. My stay was about 2 days in the hospital normal room and 1 in the icu. Not bad. Pain wasn’t that bad.
The staples coming out probably hurt the most of what I remember.
I would do it all over again. Haven’t had growth in the area since the procedure in 2015.0 -
LFF,, agreed on the staples coming out being painful. I also had a very easy time of the surgery. Had the surgery on Friday and was out Monday morning. Shopping at the grocery store later that day. Caused quite a few people to turn and look as I had part of my head shaved and staples holding my skull together. For me radiation was harder. Everybody is different and people can have an easier or harder time than us.
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Mara- I went to the sounders opening day game the day after I was discharged. I got lots of looks. I just told people I had gotten into a bar fight but they should see the other guy. Allways got a goof laugh.
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to all you amazing women!! 0 -
LFF, that comment deserves a like button, here is mine
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I love your sense of humor, LFF
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Hi everyone, so sorry I'm only responding now but I ended up in the hospital with symptoms of a stroke. I was in for several days and had a battery of tests and there was disagreement between the neurologist, oncologist, and hospital doc as to whether i had a stroke or not. I experieced numbness down one side and blurred vision and I was a bit disoriented. They did CT, MRI, MRA, doplor on my caritod arteries and around my heart. They just found a small area that they thought wasz the source of the stroke. Then my oncologist said he thought that might require waiting do do surgery.
Anyway, I scheduled a call with the neurosurgeon and he's ready to move forward so I go in next week I appreciate all your input oon what to expect The only thing that lookss scary is the halloween scars
My lesion is 3CM and he told me it would be a small incision and very little hair shaved. I have kept mmy diagnosis to a select few people because of how people freak out when you have cancer especially metastatic. Only my family know about the brain mets. I had a counselor ask me a year or two ago if I had hospice set up! I''m feeling more confident about the surgery althouhg I'm scared that I may lose more vision. He told me I won't be able to drive for two weeks because I will be out of it and with the pain I live alone and have no family in town and my longtime friends all vanished after got a divorce after 30 years. I pray that my vision will be preserved although I've lost my upper left peripheral vision. Anyway, ,thank you and blessings to all you courageous women. I very much appreciate your time and wisdom.
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