Brain Mets Sisters
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Susan,
I actually always go to my oncologists office when I can to get accessed before my procedures. They are much better about getting it on the first try and I don't trust the techs. I don't know if this is a possiblity for you (depends on if your MO and where you are getting scans are in teh same place). I only have one arm for poking so I am totally protective of it.
If this isn't an option, I think anxiety meds are a great option. No shame about it. There is alot going on when you get scanned on a regular basis. Take care of yorself and do what you need to do.
I hope you feel better soon. I think if you are getting a pet scan again in a month that passing on the CT scan is well withing your rights.
Take care
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I'm allergic to CT contrast so if they do CT scans I generally don't have an IV just a plain scan- could that be a future option? (Have to have an IV for the PET though). For bloods, I also go to the onc and use port. But I wouldn't hesitate to take anti-anxiety meds
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Back from vacay, wasn't as strong as I wud have liked to be and the nausea plagued me the entire time. I also found I had a lot of trouble eating due to dry mouth. Still struggling with that too. GOOD News...Bone scan showed NED, and CT to torso was good, no signs of mets. So going to continue with TDM-1 for the new mets to my acillary nodes every 3 weeks. Getting a Muga and poss another brain MRI next month.
Clare64 - saddened that you have to be here, but hopefully you will find some strength here during your journey. I had no idea that Xeloda works on the brain mets. will have to research that. I have 5 lesions and 2 are located in a spot that SRS is not an option. I got to keep my 'mask'...might use it Halloween...LOL! I was not put on anti-seizure drugs during my 15 wbr, but I was FORBIDDEN to drive because of the seizure possibility. I am able to now since last brain mri showed shrinkage. Good Luck!
Susan - I am heartsick to hear about you vision problems. It sounds horrible. Glad you did the march tho. Susan, I only have one good arm too, like leftfoot, and I absolutely HATE needles. They only get one try with me and then I go into mild shock. BY ALL MEANS, see if they can give you a xanax or valium before your next visit. AND insist on having someone else work on you. (((Susan)))
Chele - welcome!
Pb - OMG....I will definately put you on for extra prayers. Take care of yourself and keep us posted.
Those asking about fatigue, mine hit about 8 weeks after last wbr. Still plaguing me, but getting better.
Sher - I didnt pass out, but the dizziness was definately a problem. Had same thing happen with the roids, tapered me off too soon, so upped them and then tapered off again. Still have the headaches, only not as often and not as intense. I would call and explain your symptoms. Susan is right tho, rads continue to work long after. I had my 1st MRI 6 weeks after, not much change in the 5 lesions but there was some so that's all they can expect.
Thisisme - Have you had a PET or Bone scan? I would def ask about those 2 tests. My PET in early April showed unusual shadowing at the base of my skull, so onco ordered the Brain MRI. Am thankful to tech who read the PET and actually noticed it. So at least ask for a PET and Bone, unless you are having symptoms like headaches and balance issues too, then ask for all 3. Good luck and keep us posted.
Lou - same to you as I said to Thisisme. I also have mets to spine and ribs, but been NED for over 3 years now with Xgeva. Good luck!
Leftfoot - that is great news that your tx has ben NED for 18 months. Gives so much hope to the rest of us.
Bosco - Welcome! I was IV w/bone mets outta of the gate. 3 years NED, until this April when new mets appeared in nodes and base of skull, thus brain mri. But had to do the wbr before we could start chemo again for my nodes. Now on TDM-1 and the se's are not bad at all.
Fierce - my heart aches for you and the worry you are going thru. Susan addressed the lymph nodes, how many wbr tx's are you scheduled for? What kind of work do you do? Am wondering, since the se's on wbr aren't bad for most, if you might not be able to continue to work? Did you get the results of you PET yet? Praying all is good news, please keep us posted.
Fierce - my heart aches for you and the worry you are going thru. Susan addressed the lymph nodes, how many wbr tx's are you scheduled for? What kind of work do you do? Am wondering, since the se's on wbr aren't bad for most, if you might not be able to continue to work? Did you get the results of you PET yet? Praying all is good news, please keep us posted.
Hi K-Lo!!
Hils - Sad you are here, but hoping you'll too find some strength from all of us. I had wbr. 1 lesion was cerebell, 2 were cerebrum, other 2 on sides, don't kno what that area of brain is called. Side effects were minimal, hair loss a given, some reduced sight/hearing which is usually temp. With me only hearing still a problem. Then the fatigue, which can happen right away or out 6-8 weeks. Sending you some positive energy and lots of prayers.
Hi to you too Jill, good news too, thanks for sharing!
Sending prayers and positive healing energy to all of you!
Sue
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Thanks to everyone for the supportive words and suggestions about my needle phobia. I'm trying to learn who the good techs are at each place so I can ask for someone specific. In general, I've found it best to find the oldest person there. I also think I'm going to go with my intuition going forward. If I don't feel confident with someone, I'm going to ask for a switch. Makes me feel a whole lot better to know that you ladies understand my fears and why I was so upset.
Sue, I'm so happy for you that your scans looked good!!! I have a new friend here who has brain and lung mets and she had a great response to TDM1 even though she had progressed on Herceptin.
Hugs to all my beautiful sisters!
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My wife was just diagnosed with multiple brain mets. She has been fighting for 3 years with metastasis to the bone from the start and an inoperable primary tumor.
Started WBR a few days ago. Her primary breast tumor and bone mets have been stable for 18 months on herceltin, perjeta, lupron, and tamoxifen with scans just completed confirming this. The doc wants to remove perjeta and add tykerb and xeloda since they have properties to break the blood brain barrier.
My question to you all is anyone on perjeta, herceptin + tykerb, xeloda? I hate to drop perjeta if its working on the rest of the body.
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Maw - am heartsick about your wife. I so wish I could help but have not been on any of those except for Herceptin. Which is, as you probably kno, for the her2. But hopefully someone will be able to put your fears to rest. My bone mets has been controlled for 3 years with Xgeva, I think I would panic too if they took me off of it. Prayers and positive healing energy to you and your wife,
Sue
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Maw - how many wbr's is she scheduled for? I kno I was taken off my Xgeva and Herceptin during the entire time I was doing wbr. Maybe that is reason for change on her meds. My Bone scan 8 weeks after wbr still showing stable even tho I was off X for longer. Good luck!
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14 treatments of wbr, they are continuing herceptin, perjeta, xgeva, tamixifen, etc during wbr, but I think tykerb xeloda have never been tested in conjunction with perjeta, hence why the oncologist wants to remove perjeta after wbr and add these ither her2 drugs, so its a catch 22, add new drugs for the brain, but current drugs are working on bone and primary tumor.
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maw111, We are very sorry for your wife's recent diagnosis of brain mets and glad that you found your way to this site. Perhaps you can encourage her to join as well as she is able. As you can see there is tremendous support and information offered here by those who share her situation. You may also want to read some research news on one of our education pages about tykerb and xeloda. Keep us posted. The Mods
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Hi Jill - Glad to see you back...and with good scans. Missed you.
Sending Love and Healing Energy
Karen
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maw111- I am currently on xeloda and tykerb. I was taken off Herceptin when in my initial treatment as my heart function decreased too much. I was diagnosed with mets to my brain and liver in Dec of 2012. I have been stable ever since on these meds. I had gamma knife for my brain mets and they did the trick. Xeloda dn Tykerb have gotten gotten me as close to NED as you can get. I am not hormone positive just Her 2 positive so I can't speak to how they work with other meds. Just that they have done a wonderful job for me.
best wishes to your wife and you.
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just found out I have brain mets. Last week started vomiting all the time. Guess had some cognitive problems also. alost abou 3 days. they found 2 lesions so far one is pretty big. They are going to do a procedure on friday called gamma knife radiosurgery to try and decrease the size. In the morning I fianlly get out of the hospital been on steriods also which has helped ge rid of some of te swelling. Still may havr to have brain sutgery. But of course will br back on chemo. hope I have a few years left yet.typing is still hard to do. get so tired.
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just found out I have brain mets. Last week started vomiting all the time. Guss had some cognitive problems also. alost abou 3 days. they found 2 lesions so far one is pretty big. They are going to do a procedure of fride calle gamma knife radiosurgery to try and decrease the size. In the morning I fianlly get out of the hospital been on steriods also which has helped ge rid of some of te swelling. Still may havr to have brain sutgery. But of course will br back on chemo. hope I hve a few years left yet.
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how was the gamma knife. I have to have it done friday. I get out of the hospitol in the morning then back fo the gamma knife. Semmed like a better choice than brain surgery. They are saying about a year, but we know that means nothing. I Have been in here since friday and i am now just allowed to get out of bed alone. So frustrating. waiting for help. hate cancer
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Hi Wisperfair - I hope you are feeling better today. I had SRS which is also gamma knife a week ago at Mass General in Boston. The week before I had an immobilization device made for my head which was not bad at all. They made a mold of my teeth and attached it to a ring that came over my head and was held in place with velcro straps. The day of the procedure I put the device on and got on the table. The procedure took about 25 minutes. I had one met treated. They played music for me to make the sound of the machine a bit less loud. I didn't feel any side effects but had to take anti seizure meds for about 30 hours that made me very sleepy. I'll have another brain mri in 6 weeks. I'm on Xeloda and have another 5-6 small spots on my brain that we are watching. Good luck Wisperfair, you are in my thoughts. I hope this treatment works well for you. Clare
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My gamma knife experience went as well as one could want. I did premedicate with ativan because the day of they screwed on my head frame. I didin't feel a thing but it was unnerving to know what they were doing. I actually fell asleep in the machine while undergoing the procedure. I had two lesions and it was home a few hours after the actual procedure. I was very tired but other than that felt fine. I tolerated the procedure very well. I spent the new few days resting on the couch and then was back to normal. MRI of the head today showed that the mets are still gone and nothing new has popped up. So my regimine of gamma knife, Xeloda and Tykerb is doing everything that I could ask for.
Good luck.
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I don't want to intrude on your thread and I'm not sure it's my place to give you this news...Our dear friend, FierceBlueBird, passed away last night. Her signature said it all, "When I fear, I go where the wood duck rests his beauty on the water and the heron feeds. I come into the peace of wild things who do not live with grief. Above me stars are waiting with their light. I rest in God's grace and am free." Kristine is free now.
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Jeannie57 I'm so sorry. She was just here with us. God rest her soul. Clare
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Hi Ladies, I had a MRI of the brain yesterday and I have 4 lesions. My doc sent me to radiology for treatment. I'm a little nervous, it will be 5 days in a row. Then they are going to zap my hips and spine too for 10 days. I guess I'll be hanging out on this thread, just wanted to introduce myself. Thx.
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so sorry to hear about FierceBluebird - we only interacted briefly but she was kind to reach out to a newbie when she must have been exhausted. RIP
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Thanks for letting us know about Fiercebluebird. I had no idea she was so close to the end. She had a beautiful spirit and helped many of us.
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what does wbr mean is that whole brain radiation. I am getting the gamma knife done on july 31 to see if they can shrink my largest one on the frontal lobe.scared just found out it mets to the brain on monday.
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You can probably guess by my screen name that I'm not a Brain Mets "Sister", but my mother most definitely qualifies and I really felt compelled to post here on her behalf. Mainly to have a sounding board for what I'm feeling, and in hopes that the communal experience might help me catch anything that seems abnormal.
Anyway my mom was diagnosed with breast cancer about 3 years ago, and through radiation, chemo, and surgery she bounced right back to her normal self. It was almost scary how well she tolerated the treatments. Of course we all thought she was in the clear, and life went on as normal. More world travel for her, non-stop socializing, all her regular stuff...
Then on May 8th of this year I get a call from mom in the hospital. One of her friends had forced her to go to the ER since she noticed some odd behaviors in her during a mahjong game. Rapidly they did an MRI, CT, and a bone scan. What they found was heartbreaking. She had multiple lesions in the brain, one nearly 4cm in the basal ganglia, and lots of edema (also a met on one of her ribs). So on the decadron she went, and 10 sessions of WBRT started immediately. They had no way to biopsy the lesions due to their locations, but they were able to biopsy the one on her rib and verify it was a breast cancer met. So they treated the brain according to those findings.
The treatment went well, mom could still get around on her own but had some basic confusion like forgetting names and places, and how to use certain features on her iPhone. I think we all assumed these sorts of symptoms might get a bit worse with treatment and then she'd bounce back.
Now at about two and a half months after her hospitalization, she's still on 16mg/day of decadron since she really went downhill when they tried to taper her off. But now even with the 16mg/day she's no better off than she was after the attempted taper. She doesn't have enough muscle strength to get out of bed or off the couch on her own, and each step forward with a walker is less than an inch of forward motion. Some times she'll even just rock back and forth on her feet and not go forward at all. I know this may be attributed to the decadron, but even more worrisome is her confusion. When she's slowly shuffling around with the walker, she'll wander off course into any room that suits her mood, even if she knows she's headed for the restroom. Or she'll try to "drive through" the couch or another obstacle to get where she wants to go, and not figure out to go around it. Her long term memory is still totally there, and you can briefly chat with her about things in the past, and about people, but it seems like she doesn't remember what happened 3 steps ago, or a couple of seconds ago. She'll use the toilet, get up and wash her hands, then sit back down on the toilet, and repeat this pretty much until you break the cycle.
It's unbelievably hard for me to deal with since mom was as sharp and active as one can imagine just over two months ago. I'm hopeful she'll show some signs of bouncing back, but it's just not looking that way at the moment. All I can do is sigh.
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Hi James NC
We understand how your mother's illnesses are hard on both of
you. She is lucky to have a son like you. It is obvious you care for her and want the best for her. You'll get plenty of support and quality information here.We are sorry about your mother but glad you've come here to seek feedback.
What have the doctors said about her loss of short term memory as Dementia is often triggered by illness or stress?
You may also be interested in looking at some of ourbother forums like For Family and Caregivers of Members with STAGE IV Diagnosis or The Husbands Corner(for family, friends, boyfriends, ect.).
You may also be interested to know you are not the only male on these forums asvthere are other husbands and sons as well as the men who have BC too.
We wish you both all the best and your mother especially.
The Moderators
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Thank you for the helpful feedback and the sincere thoughts.
I'll be honest and say the doctors have been less than helpful in helping me decipher the symptoms. Both her oncologist and radiation oncologist said the behaviors could be from the disease itself, from the edema, or from the WBRT. So basically they're guessing as much as I am....frustrating.
We're both staying at her sister's place now, so she and I can both help mom with daily activities, and keep an eye on her. As a result of this we're in the process of getting her care moved to new doctors in this area, so we'll see what their interpretations are.
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JamesNC- so sorry you are going through all of this. I often feel like is much harder on the caregivers than on those with the cancer. I recently felt with my own mom's dementia due to cancer and I can relate to your feelings. I sincerely hope that things turn a corner soon. Steroids are very hard on the system and I know that there can be SE months after the treatment. I wish there was a more definitive answer for the cause of your mothers dementia.
Hugs to you
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I have a question for all of you as i was just at my oncologists office discussing future treatments should I need them. I am Her2+ and homrone negative. Currently I am stable on Xeloda and Tykerb. Tykerb is the drug that passes throught the blood brain barrier. I had two lesions treated over 18 months ago that are gone/stble with nothing new. So it is doing its job. Our discussion came about because one of my tumor markers has been fluctuating and she had been concerned that my cancer might have begun growing. Luckily for me, that wasn't the case, but it promoted a discussion about what is next. Next for me would be HDM1 most likely but that doesn't cross the blood brain barrier. My onclolgist said they don't use that in tandum with Tykerb and that my Tykerb woudl be stoped. I wasn't happy with this as I have already had 2 bain mets. I am uneasy with the thought that my future treatment will not be able to cross the blood brain barrier as I feel like part of the reason I am doing so well is because I have that drug keeping any cancer cells in my brain at bay. Her resopnse to my concern was that my lesions were treateed successfully and it has been 18 months. There is a high likelihood that any cancer in my brain has been elimiated. somehow this just didn't comfort me at all. I wanted to ask you all if I was being irrational. I know I can do gamma knife again or WBR if necessary, but i kinda feel like they would be taking away my security blanket.
I am foutunate that this is all hypothetical right now, but I worry about the future. I always worry about the future. Was wondering if any of you have had similar conversations with your oncologists.
thanks for your thoughts
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leftfoot,
First of all, congratulations that your treatments have been effective in treating your brain mets. I had WBR but no chemo and going forward they said they expect to control any new brain mets with gamma knife. It seems that radiation alone can be very effective. I thought that even the few chemos that can cross the blood brain barrier only cross over minimally anyway. Others will know more than me on that topic. So long as you are getting regular MRIs, it seems they can catch any change in your brains mets. That being said, I'm a big believer in listening to your body and going with your intuition so if you are feeling that it's not the right thing to do, you should get another opinion. It's your body and no one knows it as well as you do or cares as much as you do about the outcomes.
Wishing you the best. Please keep us up on how you're doing.
Hugs, Susan
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I'm on page 40!! Huff, huff, puff! I know I'll get to page 99 on this thread!
I just found out I have 4 "lesions" (4,6 and 2@8mm) on/in my brain and will be getting zapped for 5 days. I come to the Stage 4 forums to help me get through. Very unfortunately, I inevitably will read about someone who is climbing a tougher mountain. After reading about the strength of the women who write and share in the threads, I stand a little taller, because if they can do it, so can I!
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whew!! I read all 99 pages, I have not read ALL the pages on other threads, but this is the brain we are talking about on this one (thread). I start tomorrow with a little less fear and a little more reality based centeredness. Thx.
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