Brain Mets Sisters
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Sorry to hear what your doctors medical opinion is, would you consider going for another opinion. I used Dr. Sahgal at sunnybrook hospital in Toronto and he is using a new techniqie of radiation individually targeting the tumours rather than whole brain. He told me he has youtube videos of the procedures and from my onc I hear he is a pioneer of this therapy and very successful and it is proving to be less intrusive for the patient
You can PM me if you like.
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Are there any long term survivors out there for brain mets?
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Smiley - I don't know what your definition of long term is, but I've had brain mets for three years now. I had a friend who lived with brain mets for over 7 years.
I am having vision issues in my right eye and notice that occasionally my right pupil is dilated. That can't be good. Scan on Friday...I'm pretty sure it will show progression...sigh.
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Nancyh: Thank you so much for your reasuurance, I also notice you have mets to the sames places I do. The last 20 mths have been a gradual decline with mets finding new places everytime a treatment fails. I am now on Navelbine and hoping for some time on it so I can catch my breathe.
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Nancyh: you will be in my thoughts and prayers on Friday, I hope you are not too upset and nervous of the scans. Someone posted once that the tests help guide us and hopefully slow down progression that otherwise would leave the cancer untreated until we had symptoms to guide our oncologists. Having the visual is better but I still get worked up
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Good luck, Smiley. I hope you get a long ride on Navelbine.
I don't get anxious about scans, but I appreciate your thoughts and prayers.
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Hi Nancyh
How did it go for you, fingers and toes crossed for good news.
Happy Easter
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Thanks for asking, Smiley. My scan showed about 8 new spots, though they are all very small. My doctor is recommending gamma knife, which surprised me a little as I didn't think they do gamma knife for so many lesions. The alternative would be whole brain of course, but he seemed to think gamma knife was a better choice, leaving the door open for WBR down the road.
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Hi Nancy:
I am truly sorry, especially on the holiday weekend! Damn this cancer. I had eleven and they zapped them individually. May I ask how long you have gone between progression of brain mets and how many the first time? I have had no SE's from the radiation other than feeling really low this last month, but isnt that normal? How is the liver and lungs? Did taxol ever stop working but because you have a long time of it they are trying again? Taxol stopped working for me and I just wondered because it is such a good drug if they might try it again if I manage to go two more years say on Navelbine
How are you coping with the shock, massage/movie/good dinner?
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Thanks, Smiley, I'm doing fine, really I am. I went for a run with a friend this morning, screw cancer, I'm going to live my life. :-) As for time between progressions, I had my first brain met 3 years ago, second one was about 8 months later, then the original one started growing again, so I had it surgically removed. 6 months or so after that, the second one started growing again, so they zapped it again, that was about 5 months ago. Now I've got this shower of small mets all over the place.
Very interesting that you had local treatment for 11 mets, I think that's great. My doctor says he wants to save WBR for the future, I'm just happy he thinks I have a future. :-)
I had taxol many years ago when I was stage 2. Most recently I've been on taxotere (I refer to it as taxo-terrible, haha) and no, it has not stopped working, I just paused after 5 cycles because I had an opportunity to try Palbociclib as part of a clinical trial. I will go back on Taxotere once the palbociclib stops working.
Take care gals, hope everyone has a lovely Easter.
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smiley47,
I have a friend here in the Bay Area who has had brain mets for 5 years and is very strong and healthy. You would have no idea she is sick. I poked around after reading this thread from the beginning and a couple of the original women are still alive so that's at least 3.5 years. Guess they no longer frequent this thread but they are still around.
Hugs, Susan
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Susan, thank you for doing that research. I felt my onc was totally shocked the little crittres had gone to my brain after my blood work had been excellent for so many months. Then it was one possibly on scan, which turned into four after MRI and then when they do the planning for rads it was eleven. I had them radiated and now I'm on Navelbne, but just have to pray they dont show up again because chemo does not work on brain cancer, i believe.
Since having the rads I have been getting a burning smell at the back of my throat and nose. Does anyone else experience that? Headaches too, very mild but there.
Thanks ladiedl
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I just wanted to share that my mother has decided to go with the ANG1005 Clinical Trial. The first phase was just in patients with primary tumors and she is joining Phase 2 (metastatic brain tumors from breast cancer). We found out that her breast cancer metastasized to her brain in September 2014. Since then she has had WBR and gamma knife. I have read all of the paperwork, and there is a lot. One of the conditions is that she has to quit Navelbine, but she can stay on Herceptin while she is on the trial. News articles state that the first phase went well, and they are hopeful that the second phase will also go very well. I have been looking for more detailed information but cannot find it. There are no placebos in this study. I hope this is offered in your area and you can try it if needed.
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smiley47,
Some chemos do cross the blood brain barrier. Xeloda is one of them, which I am on now. There are others as well but I don't have any first hand experience with any other chemos. Others on this thread have first hand experience. I thought Herceptin and Taxol did too, not sure.
tasha30815,
The ANG1005 clinical trial sounds very interesting. There aren't many trials that are open to people with brain mets and this is the first I have seen that is specifically for BC brain mets. Please keep us up on how she is doing. I will ask my MO next week about it. She is the Head of BC Clinical Trials at UCSF.
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Did some poking around and found this paper. A bit dated (2013) but I found it very informative: BC with Brain Mets Paper.
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Thanks for the info SusaninSF, I read the paper but found the life expectancy part very upsetting, silly me. The research is definately moving in the right direction but clearly states there's lots of room for trails and advances if the right companies want to take part.
I was on taxol when the brain mets were found and tried Xelado as my first chemo, it lasted two months. I have a scan on Friday to see how the radiation has worked so far, fingers crossed
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hi all,
I'm wondering what your experiences were with hair loss due to gamma knife (stereotactic radio surgery) if you had any?
My tumors were near the skull so I was prepared for patchy hair loss but it's been three months and it's still falling out. I know that hair is not the main thing I should be worried about and I thank God everyday that everything is stable..but am wondering what other people's experiences were and when I can expect the hair to stop falling out and some growth to appear.
thanks a bunch
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mygodisavow - hair loss with gamma knife does depend on where the tumor was located, so if yours were near the scalp, it probably is normal, certainly check with your doctors. Sorry about that, hair loss totally sucks.
Susan - thanks for the link, good info. Smiley - it is hard not to get depressed reading the stats, but take them with a huge grain of salt. It never ceases to amaze me how the stats reported in research don't align with what we see and experience here on the boards. I'm sure it has something to do with how stats are calculated (math wasn't my strong suit, but I know there are nuances in how to interpret those survival numbers). BEST wishes to you on Friday, keep us posted.
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Hi, Nancyh, I had the survival time discussion with my onc years ago at this point. He said those stats look through the rear view mirror and don't reflect current advances and practices. That was reassuring to me.
xoxoxoxoxoxo
Calico
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Hello, ladies. I have had bone mets for 2 years and the latest scan showed mets to lungs. My brain has never been scanned. I changed the treatment from Xeloda to Abraxane 2 weeks ago. Xeloda was good for 17 months. A few nights ago, I noticed that my far vision is not as clear as it used to be. I went to my daughter's school concert and I could not spot her. I spoke with my doctor over the phone and she did not think I had brain mets. What are the symptoms, if you have any? I had laser vision correction a number of years ago. I had blurry vision with certain lighting, like dusk, but only it would get better with change of lighting or the next day. This time, it's been a few days. I am worried. Thank you.
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hansaim- if you are worried tell your doctor you want your head to be scanned. Since you have mets in your lungs and bones your insurance should cover the brain scan.
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Thanks leftfoot. I am in Canada, province run public health care. I am meeting with my MO next week so I will ask her if she can send me for a scan, but she said only about 10% of ER+ cancer metastasize to brain and my symptoms did not sound like brain mets. I have an appt with an optometrist next week, just to get a pair of glasses.
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hansaim,
Why don't you go to see an Opthamologist? Could just be normal vision loss due to aging. If you have a tumor in your eye, as I did, your Opthamologist should be able to see it when they dilate your eyes. This is how I found out I had metastatic cancer, my Opthamologist found a tumor in my eye.
I had laser eye surgery 15 years ago and had 20/20 vision until recently. My non-cancerous eye is still 20/20 but I see to have some kind of stigmatism. I got prescription glasses and sunglasses for driving and I can see much better now. I don't think it's related to my brain mets, just normal aging. The eye with the tumor in it is 20/70 but my vision is distorted because my retina is partially detached by the tumor.
Hugs, Susan
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just got the news on Monday that mom has 9 tumors this was such a shock just 2 weeks ago she was told she was NED we were so happy and now this..Cancer has a funny way of throwing curve balls like this. We just wanted to enjoy NED a lil while longer and never hear Brain.. I usually do a lot of research for some reason i havent been able to on this subject I think because of the shock of it all..what I dont understand is why this was her first brain mri, when a sub radiation DR said brain mets is common for patients who are her2+, also one sub DR said options like chemo, isolated radiation, hold off since tumors are so small mm. Her oncologist and radiation Dr said whole radiation best bet, just so scary side effects short term memory loss, loss of higher cong. function. hos is everyone dealing need all the advice..also do you experience fatigue mom handled chemo so good, breast radiation good , but she said this is just making her tired also said first time it hurt so much, is this common? My mom is a tough cookie if is complaining I know must be really bad.
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I agree - don't understand why they don't scan brain. I had a similar experience - NED then 6 weeks later visual disturbances led to MRI and discovery of one big and six small lesions in brain. I had craniotomy surgery to remove the large tumour then whole brain radiotherapy followed by chemo. Oncologist was clear on need to hit hard.
All went fine - hair loss, fatigue kicked in 1-2 months later but I was back at work more or less full time 2 months later. No obvious loss of cognitive function (I'm a lawyer) and my radio consultant told me categorically that WBR is not associated with cognitive decline. Last MRI scan in March (8 months after WBR) was clear in brain. Hoping next PET scan in May will remain clear (all my scans now include brain). Hope this helps.
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I began having visual disturbances this past September 2014. I had stepped up my exercising to improve how I was feeling, and normalize my life after spending a good portion of the prior year in treatment. While doing yard work and climbing some hiking trails, I began seeing flashing lights in my right eye. I had an MRI, and 13 tumors were found. The largest was in my occipital region (which controls sight)
The doctor got me into WBRT with/in two days. I underwent ten days of treatment in October. I began to lose my hair on the third treatment (It has just begun to grow back) I was also put back on Tykerb. I had been taken off in April when I got an all over body rash. I had lots of s/e from Tykerb. Stomach problems, fatigue, low WBC just to mention a few. After WBRT and Tykerb I was pretty run down for months. No energy, food did not taste good. Thankfully, my daughter took leave from work and took care of me until the end of March.. The radiologist did'nt allow me to drive during this time. Which was okay w/ me @ the time. I was having difficulty multitasking, problems w/ short term memory. The beginning of March my WBC was at an all time low. The doctor took me off the Tykerb, and began giving me Kadcyla. I began feeling better within a week. Here it is almost 60 days later, and I have gotten much stronger physically. My brain is functioning better. I have 6 tumors left. 5 of them have diminished in size tremendously. The 6th one still has edema around it, but I have been free of visual disturbances for a month- so I think that means it is healing. I am back to driving, and taking care of myself. I am increasing my physical activity. The Kadcyla has side effects, neuropathy, fatigue, aching joints, yet I find them easier to tolerate than Tykerb. I am hoping the Kadcyla continues to work, so I can stick around a while longer..
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Hi all, just reading through this page, got bc, left masterctomy May 2012, triple neg, 2013 spread to lungs, end of 2014 found mets in brain.
Have done A/C, Rads, Taxol, Xeloda, Cis/Gem and finally WBR last December. My onc said there is no more treatment after the wbr and gave me 6-7 months. I'm sure there are other treatments, chemos etc available but quite frankly, I'm done. We've done so much chemo in a relatively short time, and nothing has stopped this disease from keeping on spreading, After the last chemo (cisplatin and gemcitabine, which almost killed me) and wbr I was so exhausted, thin and not managing very well on my own,, so my sisters came and packed me up and brought me up to Johannesburg to live with my eldest sister. Now its 4 months after wbr and I'm sure there has been progression. My memory is worse, the vision disturbances started about a month ago and have gotten worse. My balance is bad, I've fallen and concussed myself once, am unsteady on my feet. Have headaches, my chest gets pains on one or sometimes both sides, etc etc etc. So now I'm under Hospice care and they are really great, keep the pain manageable.
sending this now before I go out cos otherwise it'll get wiped out and I wont write it again, will finish later!
Love all you brave, amazing women!!
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to finish off - regarding the prognosis of 6 to 7 months - that was at the beginning of Dec, which is almost 5 months ago, and I'm feeling "pretty good", at least I dont feel sick from chemo and now that it's behind me, I've have time to get over the effects. What I really want to say is, if they go by the stats, I have 1 or 2 months left, and I dont feel like I'm at death's door in the least! Dont look it and don't act it. I go swimming twice a week - dont do much, about 200 to 300 meters, but I'm there and can do it. Sure I have days when I feel just horrible, and I get some pain, but I'm on a regimen of pain pills (we're not even into the morphine yet, still on Oxynorm and Oxycontin) I Take the first pill at 07h30, stay in bed and half an hour later, take the 2nd and some others, in other words I'm pilled up all day, but not at doses that make me have to stay in bed or knock me out. When we need to, we'll put the dose up, or change to morphine, but they have promised me they'd keep me out of pain, and so far, so good.
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Dear Carolben. Glad to hear you are with your sisters and still getting out to exercise, your amazing. I've enjoyed reading your posts in the past and found strength and peace from your posts. I'm still waiting for warmer weather, I find the cold goes right through me. I think of you regularly and pray you continue to find acceptence and peace
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