Brain Mets Sisters
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Finally saw my MRI results yeseterday. While I have 2 small tumours at the back of my head. The lesions are really small and may just be fluid or swelling. Its great news to get. My onc is feeling very optimistic! Thank you to everyone for your support with this. Merry Christmas and Happy New Year as well.
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been too tired to even write. Blondie, yes, you keep changing your avatar pic, love it. Thanks for sharing your wbr story with me. And you're right on all accounts!
Have 3 more wbr left from Monday, been good to have this break. Symptoms all easier, so it's working.
Get confused & overwhelmed easy, balance still off. Taking lots of Cortisone - still using pain pills, oxycoton rules! But have.been able to cut down on the oxys.
Keep your chin up Keldel, almost half way through now!
Wake up and toss my cookies some days, but then the nausea is over. Fatigue hitting me big time, weight still low but am eating better. Thanks to my son, who came out from Israel last Sunday. He's the one I love most to be with. He's down to earth & knows me so well & is easy to be with. Plus we drive 4 hours a day & are getting a lot of talking in there!
The plan is to finish wbr on Wed 31st & to fly to Johannesburg on the 1st. Ben will fly home to Israel on the 5th & I'll fly home on the 7th. It will give us time with my sister, her 3 girls, their 5 kids & of course, my old Dad (92 years & not well). I feel like I shouldn't put off seeing my Dad, in particular.
Oh and my hair started to fall out in chuncks (not that there was much to start with) still though maybe my hair wouldn't.fall out, ha ha.
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Hi Carolben
I finish on 31st also. My balance is a bit better or I am adjusting better. Luckily no nausea but I not sleeping well. and fo I get tired! Good luck with your last three treaments!
Krdel
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Completed last of 10 prescribed whole brain radiation treatments today. Fatigue is terrible. Otherwise my sysmptoms like balance and motor skills seem to have improved. Scalp is itchy and hair is coming out. My radiation oncologist says that radiation is very effective for brain mets. Next follow-up is in mid January.
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Thanks Annie- that's good to know. I am waking a bit better so hopefully it will resolve itself. Thanks again!
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I was recently diagnosed at stage 4 with multiple lung mets and in Sept was found to have brain mets. In October I had brain surgery followed by cyberknife . Now I am getting chemo every three weeks-perjeta/herceptin / taxotere .
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hi Laura. Sorry you are going through all that. How was your cyber knife procedure? I am awaiting insurance approval for mine since my tumors are growing again after WBR. I should have had it 2 weeks ago but they are dragging feet. Meanwhile headaches getting worse. No big deal, just my life. Thanks insurance company!
Was it successful for you? As of two weeks ago, I had 5 lesions to treat.
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I was diagnosed with the lesions on November 17 and was supposed to have Gamma Knife the following Monday. Then they decided WBR would be better given my health , age , and one lesion was located over my brainstem and a bit risky. The waiting was terrible but in the end was the best option. It is hard to walk around knowing this is in your head. You also have to be sure what they are doing is the best for you before you go into it.
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I have my first follow-up MRI tomorrow since I had Cyber Knife in early November to treat 8 lesions. I had a Pet in mid December and all it said about the brain was that it looked like the biggest lesion was showing response to treatment. The Pet was how they picked up the brain issue but it only showed the 1. When I had the MRI it showed all the others.
Hoping for good news since the Pet results were not that good.
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Good luck Lilylady. I'll be thinking of you while I'm in my chemo chair.
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I'm now in the Brain Mets club. Had several large, 20 small lesions - finished 10 rounds of WBR which eliminated small tumors, and did shrink large ones. I then made the mistake of asking life expectancy - was told one year (by medical oncologist, not radiologist). Anyone else given this kind of bleak news? I thought the killing and shrinking of tumors was a good thing.
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So sorry 1701. No one would tell me about time agter I had wbr, but prior to wbr, the RO told me i could only have a month. That was in August. WBR shrank my lesions but some have begun to grow again. Awaiting CyberKnife to remove them. Try not to pay attention to the statistics. No one knows what will happen to each person. All we can do is try to live and have a good life while we are able to.
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feeling v low. The new bone lesion they found just before Christmas was bad enough. Now looks like I have a big scalp lesion too - ultrasound and biopsy tomorrow. Feel like cancer is seeping into my soul as well as my body
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Bosco19- Hugs. Know we are out there and thinking of you in those lonely moments.
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so sorry bosco. I wish we could make it all just go away. I know exactly how you feel about your soul. I used that term frequently during wbr. This stuff being in out head messes with us in ways that I know the drs don't understand.
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Hi Delirium!
Cyberknife is painless. That being said it is difficult to lie there still for so long with the mask on. So far so good. They radiated the surgery site and another small developing site. Last MRI was clean. Wish you great results and I just keep telling myself that I want to live and do what it takes. We are all brave and need each other. Thinking of you.
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Just a little note for those just diagnosed with brain mets---the night I found out was my worse night so far and I am new to cancer. It got better when I realized that there are treatments and brain surgery, although scary, was not as bad as I feared. The fear is worse and I am afraid especially due to the brain mets. It is so nice to have this forum. Tomorrow, after 4 cleopatra treatments, I have a ctscan to see if it is making my breast tumor smaller.
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Some of you have heard me say this before but for the sake of 1701jms and anyone else new to the board I will repeat myself. I have a friend here who has had brain mets for over 5 years! She is very strong and healthy and even climbed Kilimanjaro right after gamma knife.
I'm in a group of metastatic BC women and we've lost 5 people in just the last few months. This is a group of about 35 people. Small sample but I think they all died of liver failure. I think liver mets are more dangerous than brain mets because once your liver starts to go you can't get treatments anymore. A couple of them had actually found chemos that were working but they couldn't continue. They all went pretty rapidly once that happened.
I know four women here with brain mets from BC and we are all doing relatively well. Some of the women who were early posters on this thread are also still alive and kicking they are just no longer active participants in the thread.
Don't listen to those life expectancy stats. I haven't yet spoken to a brain mets women who only lasted 7.1 months or whatever the average is. Those are averages that include a high number of elderly people who are already weak or sick with other illnesses as well as those with inadequate health care.
No one knows how long they will live, cancer or no cancer.
Hugs, Susan
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thanks Laura. Just wish I could get the darn thing scheduled at this point! I'm glad you have had clear MRIs.
Thatvivan exactly what I have been telling myself since it all hit the fan with the progression. That I want to live and will do why itchiness. It is true. And I want to have a little fun in the process. Those are my goals for this year. I hope we can all share them with each other.
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Lily;
Hoping you are still doing we,ll after all those rads.. I had one small doses but I ahd a large tumor reoved, the n one dose of SRS, not WBR. IT turned out well for me I am three years out from that . i used vegan diet and juicing it is not a cure but seems to keep the cancer at bay. Be careful of those steroids they ruined my bones. Frankincense oil has bee n studied and found to work as well as steroids.. I wish you healing.
Hoping for you in 2015!
MarciaM
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a sigh of relief as the scalp problem turned out to be nothing at all to worry about and the radiology prof agreed today to zap my bone lesion which will hopefully make the pain go away, although it may pull my blood counts lower So I'm feeling a bit more optimistic today. Thanks for kind messages.
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Great news bosco!!
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I'm happy to hear the great news Bosco and well said Susan, stats are not something to consider. We are all our own individuals and no one knows what the future holds. there might even be a cure brewing out there
Love and hugs to all of you out there.
Tilda
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Good to hear Bosco. I became more optimistic earlier this week. Finally feeling more normal. A little slow witted but more like this isn't the end yet.
Kelly
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Hello ladies! My name is Dana, I am divorced, aged 38 with two beautiful children. Just became diagnosed with brain mets in Oct. I just was released from hospital tonight for other cancer related issues. Found out with an MRI they just took that my brain mets have gotten larger and more have arrived since my Oct. Scan. I start whole brain radiation Tuesday and am scared. I've had so many radiation sites and also chemo rounds since I've been dealing with breast cancer for 11 years, but luckily never the brain until now. I am so worried and scared. Is there any advice or heads up side effects you can give me? I also have extensive lung mets, bone mets, liver mets and lymphnodes everywhere. While in hospital I had a port put in (last night) because I am getting Xeloda Chemo after the 10 WBR tx's. Worries me more because as soon as the WBR is over I have to dive into IV chemo. Don't have any friends with breast cancer or any other for that matter. So any friendships I can make on here will be cherished. I would like that. Thank you for reading this my fellow strong brain mets sisters and I hope to hear from you soon with any advice you have. God Bless us all and give us continued strength. Xo
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Hello Dana_27
I just completed 10 whole brain radiation treatments on Dec 31st. I was pretty scared too. My radiation oncologist said that radiation is usually very effective on these mets. They may put you on co-steriods (I am on 3 x 4 mg dexamethasone daily- which causes me insomnia mostly) otherwise the hair will mostly fall out and they will recommend moisturizers for your head. My sense of smell is ok, but mostly things taste like cardboard. Fatigue is severe and they told me it could be for 3 to 4 months. I signed up for a luminosity account and listen to baroque music to help stimulate my brain. I do feel a little 'slow witted' sometimes but they tell me that should resolve. Hopefully you have someone at home that can help you out. but this week I have been doing laundry and organizing things. I feel pretty good this last week. I have gone for several reiki treatments and find them helpful. I am glad I did the radiation. I wish you Good Luck. ((Hug))
Kelly
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Hello again Dana_27
Are you on Facebook? If so, search for "The New Closed Metastatic (Advanced) Breast Cancer Support Group"
This is what is known as a closed Facebook group. You can join it, your friends will see that you joined it (so if they don't know you have cancer they will likely figure it out) BUT they will not be able to see or read anything you post inside that group. There are currently 968 members in the group. It is a very informed and supportive group.
Kelly
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hi Keldel! Thank you for your reply! And thank you for the advice. I appreciate you and congratulations on completing the 10 treatments!!! I can't wait to have this behind me. I am more worried then ever about this brain radiation, and I've been through so much so that's saying a lot. I know we all have been through many different uncomfortable and exhausting treatments to fight for our life. I am trying to keep myself in check about these brain mets, but I just am so scared by them. It's been my biggest fear since my diagnosis. You being so brave and writing me back letting me know that your back doing chores and on your feet just under 2 weeks of completing the regimen, def gives me hope. Good for you! I have my mom able to come help, she's taking a leave of absence from work to help withr the kids and I. Just not sure how much help I'll need. I am familiar with radiation fatigue but wondering if because it's going to the brain this time...will it be worse? I am planning in donating my hair to locks of love again..,can you help me with a time frame as to when you started the hair loss? How many treatments in before you had any loss? And how did you handle it? Cut it short first? Then shave? That's what I did for chemo back in 2003. I made a mistake on my first post...I was on Xeloda when the brain mets got WORSE. I'm starting Taxol with the port right after brain radiation. I had taxol in 2003. I will deal withr that road when it gets closer...right now I am less than 48 hrs away from my simulation/first brain rad. Have to focus on that.
God I pray to have this fear go away.
Thank you Keldel for your support. I am in Facebook and will look up the page you mentioned. Xoxo happy you wrote back and happy you made it through like a champ! Right now you're my hero! Can't wait to be done also. ((Hugs))
Dana
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Hi Dana_27, glad to have been able to help. I don't have children, so I am sure your Mom will be very helpful. I was / am able to do self care but my radiation oncologist recommended that someone always be at home in case I fell or had a seizure - neither happened by the way. I am a pretty stubborn and independent patient so I am pushing myself to do as much as safely as I can. I find I get more done in the morning and was able to get in a walk with my dog ( and a helper) for 15-25 mins each day. Try and get outside for a few minutes everyday. I picked up a basic cane.
hair came out 5 -7 days after the last treament. I cut it super short first...less than inch with a beard trimmer / mens grooming kit. It was really short anyway from chemo about 6 months prior. I dont know that the fatigue is worse than with other rradiation I've had but these steriods give me insomnia and I am only getting maybe 4 - 5 hours of sleep a night and find it difficult to nap. Good luck! You can do this!
Kelly
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the hair comes out different than chemo. It comes in huge clumps. So if you anti save it, I would go ahead and cut it all at once. Mine started shedding about halfway through my 15 treatments. Then all of a sudden around tx 12, there was no stopping it. I would run my hand through and pull out giant clump after clump and watch it blowing all ovr the patio. It didn't really bother me to lose it this time. I guess because it is my life on the line now and not just my vanity.
Have to admit now that I am passed so much of the overwhelming fear that I do miss it. It had gotten to just below my ears and I was enjoying not covering my head. I'm completely bald now which I have not been before. Chemo had left me a little. Ok hair ramble over don't know where that came from. Good luck !
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