Brain Mets Sisters
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Susan, thank you for all the info on what to expect. That is so helpful to know what to expect. I may decide to ask for an ativan. I will see. I have an MRI tomorrow and the RO appointment next week to see if we have to treat now or just keep watching.
Kris, if you can, I recommend asking for an ativan the first time unless you choose yoga breathing. I am linking noises you will hear in the MRI machine to give you an idea. It is very strange sounding but not scary. Close your eyes too. I usually fall asleep in mine unless I have a tech who wants to tell me how long each section is. The bottom link will help you with a good breathing technique to feel more relaxed inside the machine. It is not painful. You may also be given a contrast through IV. This is not always the case but I always get it. Good luck, keep us posted.
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iwrite, funny you mention the MRI sounds, I was telling my husband a couple weeks ago that it sounds like watching a 50's syify movie, while your house is being renovated and several children are banging on pots and pans, lol
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I take a benadryl b4 I go in because I've had reactions to the MRI dye contrast.
L
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Becs wonderful to hear from you and so glad you found something that is working and going to Jamaica!
Good luck to all those getting procedures in the next few days. Breathe and relax. I find the more I stress the more I freak. Daydream and I always request Bruce Springsteen on high volume
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My MRI is at 715 am. I plan to let the tech know I will sleep this time so I do not want a blow by blow of how long each series of sound are. I followed the yoga breathing at above link to get over my fear of the MRI. Now would just like peace and quiet to pass the time. We will see. Good luck to others who are also having MRI or been recently treated as well.
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Becs, Thanks for sharing the combo that is working for you. It seems that my brain mets reappeared when I got off of Xeloda but they switched me to Ibrance+Faslodex because I had some lung progression. My MO still hasn’t given me a definitive answer about whether or not I am HER2+. The gamma knife can treat the progression but I think we need to figure out how to keep new ones from popping up. My MO has been going to a lot of conferences so I haven’t seen her since my scans showed brain progression. Still waiting for my appointment to get set up but now she’s at ASCO.
Mara, I like the quiet too. No announcements from the tech, no music. And I keep my eyes shut before the bed starts moving. Don’t want to risk feeling claustrophobic. Usually fall asleep. I always get the contrast too. Hope all goes well tomorrow.
Hugs, Susan
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SusaninSF,
Doing ok weanomg off steroids
Paul
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Glad to hear from you Paula.
My MRI was good, got a good nap in there. Will get results by Dec 7. If the new lesions grew again, we will probably gamma knife them now. No point risking them getting too big. If they stayed the same size, we may just watch for another few weeks. I vote for watching but who knows.
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Thank you all for the good advice on the mri. I took a Xanax and covered my eyes with a washcloth. Very doable....I laughed at the disco type noises as well. I was able to get results in an hour....no brain mets...just have vertigo. I can live with vertigo....thank you wonderful women for easing my anxiety. Stage 4 sucks.
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Kris, good for you and YAY for the results! Happy dance for sure.
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Kaption, Please let us know how the scan goes. I know you have been in a kind of limbo as to what is going on.
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Hello All!
Who is on Tykerb? What is your experience? I am starting tomorrow. I am also on Herceptin, Letrozol and Fasodex.
Joy
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SusaninSF,
I just had Gamma Knife last month. It was easy. I did not have the cage, but a mask that held my head to the table. I was a bit fatigued after for a bit, but no other side affects.
Joy
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Mamame
Thanks for asking. Had the MRI Wednesday morning and as of Thursday night, still no word. I’m taking that as a good sign, because if there’s a problem I hear quickly. I get the MRI at a hospital that is not part of KU Med ( for my convenience). They send report to my MO. I do not get it through my online portal. If nothing else, I have an Abraxane treatment Monday and I can get a hard copy then.
I’m not real worried. I’m pretty sure I’m leaving Abraxane behind- but we need more info before that happens. PET on December 12.
Thanks for asking. I’ll update soon, I’m sure.
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Joy- I was on Tyler’s for 2.5 years along with Xeloda.
I had GI upset ( diarrhea) mostly and fatigue.
It was tolerable and did not affect my daily life much
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Six month MRI check (because of light headed sensations). All stable! Reads exactly as the last one. I have one lesion at the dura level, over my right eye, that was radiated and shrank 20% in March.
Not sure why I experience the light headed feeling. They are very brief (2-3 seconds), right at the top of my head and have just one or two a day. Maybe a chemo se.
Anyway-yay for stable!
PET next week to check the rest of me. TMs are rising.
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Kaption, sorry your TMs are rising. Hoping the PET does not show progression.
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kaption, congrats on the stable MRI
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kaption,
I find I have all sorts of strange symptoms that I overly analyze now. They may. E surgery or radiation side effects but for me the heightened anxiety is also a likely culprit. Yeah for the clear scan and hope the PET follows suit and the TMs are an aberration
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Great news Kap! Fingers crossed for a clear PET too. Damn TMs.
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Thank you all! I’ll let you know what next week brings.
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Thanks to everyone who shared what is working and not working for them!
This week I am doing 5 days of radiation treatment to the cerebellum to try to stabilize the growth there and to target a few areas that were still enhancing on an MRI after my craniectomy in October. Overall, I think I'm healing and the radiation treatment is making me more tired than usual but not too bad. I meet with the MO soon to discuss my future systemic treatment. It seems like things are stable from the neck down, so we may choose to stay on H&P.
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Just finished my WBR end of September. Scans are scheduled for Monday Dec 11. I have felt pretty good appetite has improved experiencing acid reflux a lot but controlling with otc meds. I have had symptoms with my legs getting so weak that they are unable to hold me up. Not sure if radiation SE or possibly a lower back problem. My bone mets are stable. I am so afraid I am going to fall. Any advice would be great. Wanda
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Wanda, Have you had the leg weakness in the past? Although there are benign reasons, I would encourage you to contact RO and MO to report this. It can also be SE from rads but better to get it checked sooner to be safe. Keep us posted, PM me too. I am thinking of you.
In my own news, my lesions we found in June did NOT grow bigger from the MRI done in Sept, so we will keep an eye again and do another MRI in approx 3 months.
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Wanda, when was the last time your back was checked for mets? You said they were "stable" but didn't say when last scan was done.
I get around with a cane and a walker because I have weakness/numbness in my right leg and right buttock. Rads in April helped with some of the pain, but not the weakness, sadly.
L
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Lita, my last bone scan was the last of September. Which showed stable.
Wanda
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I just found out today that I am to have a double sapingu oophrectomy on Monday. I am still adjusting to this news. While not expected, the timing, right berfore/during the holidays, was not what I was expecting. I have a growth on one ovary, I'm 45, and it's generally believed that oophrectomy is a good idea for me, given the background of MBC. Have others on this thread been through this?
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Lisa,
I have not but will be in January. It will be prophylactic but as I am 38 surgical suppression is recommended as opposed to so much Lupron. More drug trials will be open with surgery than without.
At least that's my experience. My surgery is scheduled 19 January.
Josee
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Josgirl,
Thank you for the response! I should have said that the oophrectomy is "not UNexpected" but also not what I was expecting at this exact moment. Your answer does help me to feel better about this most recent decision. *Sigh* sometimes it feels like it's something new every day.
Lisa
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Lisa,
I was spayed in 2007, after my Stage 2 diagnosis. I was 44, and MO thought it a good idea because of my hormonal status.
The procedure was a breeze. I've had more discomfort from a bad period, physically. However, the sudden depletion of estrogen can do some funny things to your brain. It can cause depression, fatigue and a stunning loss of libido. Just be aware that all these SEs can be worked through, with time, love and effort.
It is all worth living, though.
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