Brain Mets Sisters
Comments
-
actually had my first treatment today. Yesterday was more measuring. 5 days of zaps to the brain, 1 down, 4 to go. I could feel my neck artery pulsing against the mask. Had to really focus on my breath and stay centered.
0 -
Sky lotus - hope your WBRT goes swiftly and uneventful lay. I completed WBRT (5 sessions) last week. Now just (today) embarking on Xeloda and Avastin. All fingers crossed.
0 -
hi Bosco! Thanks! I am getting my hips and back zapped after the brain, so 13 more days and counting....
Hope the new drugs do right by you! ;-)
0 -
Leftfoot - I finished 15 wbr the end of April for 5 lesions, too many for gamma knife. There was also new mets to acillary nodes on both sides. Onco wanted brain mets treated b4 treating the nodes. I am now on TDM1, trade name Kadcyla, every 3 weeks. CT and Bone scan last month show 1st mets to my spine and ribs is still stable with my Xgeva shots. Am due for MUGA, as TDM1 is herceptin, and another Brain MRI next month. No one has even mentioned Tykerb so I will ask, but thinking they will not do so while on TDM1. I hope I get at least 18 months of clear brain scans, at this point I would be thrilled. Is natural to worry about the future, but please try not to and please get a 2nd opinion if you can't find the answers on this thread. Good luck to you and keep us posted. (((LF)))
James - Sorry about your mom. I kno how hard it is to be a caregiver. My question, when was her last Brain MRI? And please consider getting a 2nd opinion. I did and was totally relieved. I too was on decadron, weened off too soon after wbr, back on for at least 6 more weeks b4 weened off again. So on it about 2 1/2 months. I never did experience the symptoms your mom is, well, some memory loss, eye sight issues, hearing issues, but all 3 mostly resolved completely now. Breaks my heart to read the condition of you mom. I will put her and you and your sister in my prayers. Please keep us updated on her progress. HUGZ
Sky - sorry you've gotten that kind of news. I kno I was totally thrown when mine was diagnosed. I always knew, being stage IV/mets outta the gate that it would come, but after 3 years I was feeling like my old self, so it just blew me away. But all I could do was deal with it. As you can see above, so far so good. Yes you can do it, as we all do and will continue to do as long as possible. I remember the mask and how I tended to panic just a little fearing I'd choke or have a coughing jag. I had to say my 'mantra' over and over to calm my breathing, so don't feel like you're alone. Good luck and keep us posted. I was told I could radiate my spine and ribs if the pain was unbearable. But I was told that once a spot or area is radiated it cannot be radiated again. Don't kno how true that is but am not planning on any rads to spine until I can't stand the pain. (((Sky)))
Bosco - Congrats on finishing and good luck on your new treatment. (((Bosco)))
Hi SusanSF - sounds like things going OK for you? Good advice about listening to ones own body. (((Susan)))
Love, Prayers, and positive healing energy going out to all of you,
Sue
0 -
thanks Mema! Just finished up day 5 of brain zaps. Tomorrow starts the right hip. I hope it brings some relief. I really haven't been feeling well, and I'm wondering if it's a cumulative effect of the radiation, as I lay here with a wool flannel castor oil pack to my abdomen, looking for relief. They said today, another brain MRI in 6 to 8'weeks or maybe 3 months. Meantime, I'm just trying to stay in the moment and not get too far ahead of myself. Not always easy.
0 -
Hello Ladies-
Writing in here because my mom's oncologist just ordered an mri for next week due to small spot lighting up on CT scan. I am trying to think positive but with this disease it is hard as you all know. I was just wondering what are the treatment options for brain mets. I have read about some chemos not being able to break blood brain barrier. How are you all tolerating your treatments? I just want to prepare mentally in the case my mom does have a brain met. I tend to ask Dr. Google a lot and terrify myself.
I hope you all are having a beautiful day!!! If anyone deserves it it is all you brave women on this board.
0 -
Hi Lindsey,
If they do find a suspicious lesion in the brain there are various options for treatments. If she has one, small lesion, they would likely do some type of stereotactic radio surgery such as gamma knife or cyberknife. These procedures are painless and have virtually no side effects, in spite of the name there are no actual "knives" involved, the procedures use targeted radiation. If, on the other hand, they found multiple lesions, they usually do whole brain radiation (you can read about that from some of the posts above). Sometimes, based on the location, size, or what have you, they might do surgery (a procedure called a craniotomy) to remove the tumor. I've had a couple go arounds with gamma knife and cyberknife and I had a craniotomy a year ago. As scary as brain mets are, they can be managed. Best of luck to your mom, hope the scan shows good news.
Oh - and to your question about chemo, for the most part, they do not cross the blood-brain barrier, so treatment of brain mets tends to be "local" with radiation and or surgery. I think Xeloda might cross the BBB, maybe some others. The other gals here will correct me if I've misstated anything above!! :-)
0 -
Nancy,
Thank you very much for responding! I am glad there are odifferent treatment options. So far there only seems to be one tiny spot (unknown) in question so we shall see what the MRI shows. Did you have any symptoms prior to your diagnosis? My mom doesn't beyond the forgetfulness here and there of what her oncologist calls "chemo brain." No headaches- dizziness or anything. I know that symptoms dont always present all the time. Again, thank you for the response and detailed explanation!! It gives me hope that there are various treatments and that in many cases the mets can be managed.
Hoping you have a beautiful day!
lindsey
0 -
Hi Ladies-been on here a long time but haven't posted much. Had diagnosis of brain mets since beginning of year. Last MRI shows new growth. I was on an Affinitor study but have now switched to TDM-1. Not sure if I have many other options, already done WBR-didn't work. Have a 7 and 3 yr old boy and this just sucks-I'm sick of the roller-coaster, but I don't need to explain that. I should be happy 2+ years of recurrence and I'm still here. Well hugs to you all-I'll keep you posted!
0 -
Hendricks-
Praying that you have many more treatment options and that one will knock out those mets. I am not super familiar with treatments for these but is it at all possible for them to surgically remove them?
Cancer sucks!!
Hugs-
Lindsey
0 -
Hi Everyone,
I've followed K-lo for a long time on BC.org I'm hoping this isn't her but maybe if you know her more intimately than I do you will know if it is her that has passed on.
Thanks,
Amy
Kathy Day
February 23, 1955 - July 24, 2014 IN LOVING MEMORY OF KATHY DAY Kathryn L. Day, 59, loving wife, mother, grandmother, sister, and friend died on Thursday morning, July 24, 2014. The cause was metastatic breast cancer. Born in Philadelphia, PA on February 23, 1955 to parents Mercedes and Charles Lopez, Kathy grew up in Palmyra NJ. She trained as a registered nurse at The Cooper Hospital School of Nursing in Camden NJ, then worked as an RN in Ocean City NJ, Long Beach CA, Bloomington IN, Franklin IN, and Columbia MO, before finishing her career in Birmingham Alabama at UAB Hospital. She gave care and comfort to many during a nursing career that lasted 36 years in several specialties including critical care, operating room, and PACU. Kathy was a member of the Unitarian Universalist Church of Birmingham, where she worked with the membership and justice committees. She enjoyed birding, music, gardening, and playing with her friends and family. She is survived by her husband of 34 years, Timothy Day, her son Matthew Day, 23, her two-year-old grand-daughter, Alaina Day, and by her sister, Barbara Giano, and brother, Charles Lopez. A memorial service will be held on Saturday, August 9 at 3 p.m. at the Unitarian Universalist Church of Birmingham located at 4300 Hampton Heights Drive, Birmingham, AL. Memorial contributions may be made to the Greater Birmingham Humane Society, Birmingham Audubon, or Living Beyond Breast Cancer.
Published in The Birmingham News from Aug. 6 to Aug. 8, 2014
0 -
Thanks Amy. Would definitely appreciate someone verifying this. I had been thinking a lot about K-Lo. She made a brief post a few weeks ago after not posting for a long time. When I was first diagnosed, during those darkest of days, she made a big impact on my life by telling me that she had a similar diagnosis (brain, lungs, etc.) and had been living a fairly normal life for years. I had no idea that was possible and it really made me feel better. I went from feeling like someone was holding a gun to my head to looking forward and researching treatments and alternative therapy.
If you read back to the beginning of this Brain Mets thread, she's the only one who was still posting though there are a few who were early posters who seem to still be alive.
0 -
I am so sorry if this is K-Lo, she was indeed a woman who made me more hopefully as well. Prayers and comfort to her family and may God rest her should.
Hendricks have you tried Xeloda? It is being shown to cross the blood brain barrier. I'm having my first MRI since starting it i n July to see if anything is changing in my brain and will let you know. IT is very early for me but i'm hopefully that I'm close to stable.
0 -
Yes this is K-lo. Someone posted it on the boards a couple of weeks ago. Sorry to hear this too.
Sending Love and Healing Energy, Karen
0 -
Just got my scan results, have a new tumour in my craniotomy cavity. Dr. has already done SRS on it 3 months ago, it has come back and now he plans to hit it with 5 treatments of targeted radiation. He says there is a risk of necrosis. Has anyone had 5 or more treatments on one tumour, without it being WBR? How did you feel during treatment?
Sending Love and Healing Energy, Karen
0 -
Sad to hear this…Clare 64, thanks for your message. Yes I have done Xeloda, can't remember but think it was last summer and made me VERY sun sensitive. As in hospitalized for 3 days with sun rash. Hope it works for your!!
Been on a 2 yr recurrence roller coaster and feel like I've taken everything. TDM1 seemed like my last chance-we shall see! Thanks and hugs to you! Gail
0 -
@ Karen, I just did 5 brain zaps to 4 lesions, not WBR, because 3 lesions were grouped together they radiated 2 spots. My Doc wanted me to take 4 steroid pills a day, but the radiation oncologist said only 2, thank goodness, because all I wanted to do was eat! And I've already weaned myself off them entirely. Now I'm getting rads to the right hip, 6 more to go and counting.....I am going to ask about the ongoing headaches when I see her this week.
Hope your experience with it goes well.
0 -
Skylotus - Thanks for the well wishes, I'm having headaches too. Not bad ones, just irritating daily ones that tylenol takes care of. Keep us informed of how you're doing.
Sending Love and Healing Energy,
Karen
0 -
Thinking about you today Karen, hoping all goes well with the new treatment! Safe journeys.
Will resurface myself at some point - treatments holding, summer distracting, but always cheering for you in the background.
Hug
Sophie
0 -
My mom now has brain mets. Three small ones and drs want to do WBR. I cannot even tell you all how utterly disgusted I am. So my mom's cancer has progressed and went from just bone mets to now brain mets and my dad was diagnosed with colon cancer last week. Life is good!
0 -
Lindseyc- I am so sorry to hear your news. I can realte a little. In 1998 both of my parents were diagnosed with incurable cancer within 6 months of eachother. That year was very hard for me. My heart breaks for you as this is a very hard time.
As far as the brain mets are concerend, there are great results with mutliple types of brain treatments. I had 2 mets 19 months ago, and as of now, I have no evidence of disease in my brain. I am hopeful that your mothers treatment gives her relieve and more time to spend with you.
I might ask if they discussed targeted treatment for the small mets like gamma knife instead of WBR. If you can save WBR then I would try to . Of course, I have never been through WBR and don't know the specifics of your moms diagnosis. Might be worth asking.
Hugs to you and your family .
0 -
Hello-
The neurologist and other doctor (don't know what kind) recommended WBR v. Gamma knife. I spoke to my parents again- they are currently driving back from MSKCC and they said the spots are outside of brain in tissue. I am unfamiliar with brain and layers of skin/tissue- etc.! What I am getting from them is that there are these three small spots (not tumors) outside of her brain; and WBR is recommended so that any lingering cancer cells will get zapped v gamma focused only on spots. So confusing! And chemo is getting changed.
The nice thing is that MSKCC is actually agreeing to let my mom be radiated at Yale which is a bit closer for us.
Damn cancer!
0 -
I read through your 99 pages of brain mets forum, and another forum in regard to brain mets testimonies. I've known a few who had brain cancer, mets, and died. I was dx June 13th stage iv to bone, spine, femur, hip, lungs, liver, hiler nodes, and breast. Since I am her2+ my oncologist was suspicious of brain mets. I did confess that I've been dizzy or light headed thinking it was from C7 spinal fracture/mets. Last week, I had a brain MRI done and today learned the results. I have 5 brain skull mets and 1 tiny brain mets that controls the brain/balance. The radiation oncologist tried to talk me into whole brain radiation. I said no. I read too many horror stories and I want no risk of personality change or loss of memory. She said brain mets can kill you. Well, so can liver and lung mets. I stood my ground so she then said the other thing to do is Gamma Knife. I will probably have that done next week. They feel just because you have one cancer in the brain that more will be coming. I read stories where that did not happen.
My oncologist said the Herceptin/Perjeta, estrogen blocker shot, and bone shot should control the skull mets.
I have been given frankincense and a diffuser. Frankincense is suppose to be a cancer killer. It was recommended that I sit in a small pop-up tent and breathe in the frankincense fumes. Another friend loaned me her portable tubal infrared sauna. It is supposedly using the theory long term heat (like a fever) kills cancer. I've been given a lot of holistic supplements like turkey tail (mushrooms) that supposedly helps the immune system. I'm also going to be doing weekly vitamin c infusion shots. I'm hoping with the arsenal I've been given that I can fight the cancer beast.
So...not sure where I belong in the stage iv board in that I am bone mets, brain mets, lung mets and liver mets. I haven't read yet or had time to think about the liver or lung mets. I did appreciate reading your stories. Very encouraging. Thank you for posting. You all are awesome warrior fighters!
0 -
Oh Hi Sophie, have wondered about you a lot lately. Thanks for the well wishes. Glad to hear from you.
Sending Love and Healing Energy,
Karen
0 -
Hindsfeet,
I find it odd that they would recommend WBR to you with only one small brain met. If others show up later you can always do WBR then. I think it's best not to radiate more than necessary. Good for you for advocating for yourself.
I was worried about personality changes and memory loss but so far I have not experienced either. My RO did say that she thought the memory loss occurred a year out and my treatments ended 5/23 so I there may be hard times ahead. Certainly, I wouldn't have chosen WBR if I had the option to do gamma knife but I had over a dozen lesions and they thought there were probably more that were too small to show up in the scan.
I too have lung mets so I follow both threads.
Rooting for you! Keep us up on how your treatments are going.
Hugs, Susan
0 -
Thank you Susan for responding. Sometimes, I'm not sure I'm welcome at bco because I've been a strong alternative advocate, and there are those here, who are not fond of me...although since I was early stage 0 and 1a, I basically only did surgery. If I actually did more alternative with diet and all, I might not have had a recurrence. When dx with stage iv, which is a complete shock, I am forced to look at a whole different set of cards. Right now, I'm making choices on quality of life. I'm doing what I can to stabilize the tumors and give me time to get my house in order, and to be here for those I love. I am well aware my prognosis is not good. I have cancer from head to femur. I just found out I have another tumor in the liver..1 C. I am living every day as a gift...and thinking more about living than dying. My life and times is in God's hands and when He calls me home, I'll be gone. Until then I'm living life. I'm still working full time, and doing what I can to manage my home. I'm slowing down, and doing a few things I've put off for years.
It is strange posting on stage iv forum as I rarely visited it before diagnosis. You all have gone through so much and stand so strong. Encouraging.
(((hugs))) to all of you.
0 -
Hello all,
I didn't expect to be joining you, but it looks like I now have brain mets. It's kind of weird, because both my previous and current oncs said that it "almost never" happens that skull mets seep into the brain, but that's exactly what has happened. I've had skull mets for the past 4 years or so, and they were behaving themselves just fine during that time. Until now, when they started growing, I guess, and this week's MRI shows that they've punched their way into the brain.
I asked about gamma knife and/or surgery, and my onc said no, because it's like playing "whack-a-mole." He said we could eliminate a few spots, but that my skull (and hence the brain) likely has a lot of tiny cancer cells that we can't see. The skull mets aren't these conveniently identifiable spots, more like smears where you can't tell for sure where they begin or end.
So, he wants me to do weekly spinal taps to inject methotrexate into my spinal/brain fluid. Apparently they sometimes do a shunt for that, but my stupid skull is too narrow for a shunt (not the cancer, apparently I was just born that way). So I go do my weekly Gemzar on Mondays and then the spinal taps on Tuesdays.
Has anyone else done this? It seems an uncommon choice, but I like it better than WBR. I just want the headaches and seizures to be gone. And I'm still reeling from the diagnosis of brain mets on top of that.
0 -
Raro-
I am so sorry to hear about the brain mets. My mom saw a brain oncologist at mskcc and she recommended WBR even though my mom's spots (3) aren't quite in the brain (tissue between skull and brain). My mom asked that they do the gamma and surgery and she got a similar response as you. The dr said she would rather do the WBR in the case there are any circulating cells that could penetrate into brain. Obviously surgery and gamma wouldn't get those. It is interesting how drs approach things differently. My mom would most definitely rather have the gamma but will follow the recommendation of the dr. She will also be having her chemo changed. I hope that you have success with your treatments.
Hugs-
Lindsey
0 -
Lindsay
I had a craniotomy then WBRT about 4 weeks ago. Only side effects so far have been hair loss and fatigue which my onc said would peak about 6 weeks after treatment. Wish I had shaved my recently re grown hair before the surgery/wbrt as my neuro surgeon wouldn't let me shave it after ( skin too delicate in his opinion). That meant 2 weeks of vacuuming up hair and now left with a few wispy bits which are even more irritating! Hope your mum's treatment goes well.
0 -
QqHello Everyone! I haven't posted here before as I do not have brain mets. My mets are in the bones extensively, the liver, and now the skull. I had a brain MRI done almost 2 weeks ago. It revealed a small lesion in my skull just above my left eye. Apparently it is not in the brain but it is in the skull and a bit in the dura. I am really unfamiliar with all of this terminology as I have been fortunate enough to not have it in my head until now. I have lurked here a bit since some of the sisters here were also were friends from the regular Stage 4 board as well.
Anyway, I have some questions and I hope you can help me with them. When you get cancer in the skull does it usually end up going into the brain, or does it usually just stay in the skull IIself. Is it worse that it is going into the dura? Does that indicate it is going into the brain? My onc also ordered a Pet Scan which I just did yesterday. When we have those results too he wants me to see the radiation onc. Is that how they usually treat this, with rads? Whatever info anyone can provide about skull mets I will greatly appreciate. I know nothing or at least very little about skull mets. Is it unusual to get cancer on your skull? Thank you so much,
0
