Brain Mets Sisters
Comments
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K-Lo ~
Yes ma'am, it is good! I'll admit that I was kinda hoping they'd say that it was probably just a case of reactive nodes and to rest easy with my MO's decision but I really knew better than that. Amazing how our intuition develops along this crazy journey, isn't it? I really do feel quite peaceful and resolved with the thought that if I have to fight again, so be it. I'll just beat it again!
I am glad to have recommendations from a renowned facility like Johns-Hopkins on my side. These nodes are getting dealt with, one way or another! Good news or bad - I do better knowing what it is I have to deal with. This "hurry up and wait" when it could be something that needs attention being acceptable to an MO when so much is on the line is unfathomable to me!
It sounds like you have an incredible team working with you and that truly is a blessing! I'm keeping all of y'all in my prayers!
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Surly ~
Beautiful way to put that. The incredible women I have met on this journey has made all of the other foolishness well worth it. I've lost some friends, both on the boards and not, and as painful as it is, having known each one of them has made me a better person, patient, mother, wife & friend in some way and I wouldn't trade it for the world.0 -
K-Lo
Love the photo. Makes me very happy. Beautiful family. Thanks
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my bottom left side of my lip started getting numb about a year ago and they didnt know what to do so we did a brain MRI and it showed my brain was ok then a few months ago my chin started to get numb and it really hurts sometime, burns at night and is just very uncomfortble, affecting my speech also. Had another brain scan which showed nothing , waiting on results from my pet scan, will find out next friday. I am so afraid of what this may be...
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Hmm...if they did a MRI of the brain and it was clear you are good with the brain. Maybe it's a nerve issue?
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Wow, Deloris, I can see my self obsessing about this. We've all had false alarms but also real findings. Me being an aggressive ex-RN, Id make an appointment with ENT or anyone who would look at it differently.
Surly, OK you're already ticking me off.....JUST KIDDING, I KID!
Yes, my son loves cooking and he loves his daughter.
Hugs and love,
Kathy
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K-LO, what a beautiful picture!
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Back to gamma knife tomorrow. I enjoyed a great run on Halaven but now have 2-5 small tumors. No SXs. I have been through gamma before and have been lucky enough to have a good response with no SEs.
What I dread most is getting up @ 4 am and not having coffee. Wish all the treatments could be this easy.
Sometimes brain mets make me feel like a grenade with my pin pulled but reading others stories helps keep perspective.
Keeping all of you in my prayers. Hope Deloris finds an answer.
K-Lo have been following your posts and admire your calmness while facing such huge decisions.0 -
Ok ladies, time for the news.
After a very long story I don't want to go thru again, I am in hospital with intense nerve pain and loss of movement in one leg and partial in the other. I have a massive tumour wrapped around my lower spinal column. Not operable. Start radiation tomorrow with aim to shrink it. Hope to reduce pain but may not return mobility. I am now dealing with the palliative care arm of my health service.
I think I will not post any more, but may change my mind. I will read occasionally because I've come to care about you all but I need to focus on me and my family.
So I send my love.
Cheers,
Angela xxx0 -
Angela,
You will be in my thoughts. My mom had an inoperable tumor in her back that radiation helped shrink enough to eliminate most of her problems. I hope the same for you. Know that I am thinking of you. May you be comfortable on your new journey.
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Koda here, recovering from brain surgery cerebellum....Glad most gals here have not had to go through it. But wish I could find a few gals whom I can relate from. Still having drainage to back of my scalp which is annoying. I still have headaches and God forbid if I cough. Suppose to have 13 WBR but wonder if I sould wait or get the Rads while I am on disability from work. My though is get it done then let my hair grow back, I still have some left as they only shaved the back for surgery. I wear my hair longer and feel like a freak again as I already went through Chemo before and after in and 2008-2009. I am Stage 4 and applied for SSI. The Steroids have changed my look and appetite and feel awful. I am currently taking 2.25 mg twice daily and tryed to go off steroids after surgery just to go into ER last Sat. and with headaches and feeling unwell, they said Brain looked good but I probably stopped Steroids too fast. So of course they loaded me with i.v. steroids and put me back on them. I have always dieted and Have always looked good at 52 yrs old. Last month I have ate so much, foods I would Never splurged on, fast foods, salty, high fat, ect. Help...I am out of control and still feel worse than I did before the Brain Surgery, my quality of life has changed, woke up with ankle, knee and muscle pain this am and had to take pain pill. I can't think, vision changes and think can I go through Rads now and my deteriote even more. Typing this took 30 min.
Have a good day everyone, Thanks for reading and Hugs and Blessings!
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Hugs to you Kodapants. You are in the thick of things. Know we are thinking of you. I hope that this process gets easier soon. Steriods suck the life out of you. Do what you need to do now for comfort even if that is salty fatty foods. Once the meds are lowered you can refocus on that. For now, do what you need and give yourself a break. It sounds like you are your worst critic. Hoping that things even out for you soon.
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Koda - you've had quite the time, hope you're feeling better. I had WBR in November and my hair has barely grown back. I was told not to expect it to grow back, so I'm happy that I have some fuzz. But I wanted to warn you that yours may not come back or it could take a very long time.
And yes, eat what makes you happy!
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Dear Angela,
I hope your team is there to support your needs. So if you dont post again, we will assume you are in a net of professional and family love.
But if you get conflicted or confused, come talk it out with us. We can feel certain one minute and then like a tossed salad the next.
K
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Angela,
Sorry things have gotten worse. I hope rads provide relief and mobility returns. We will be thinking off and hope for better times ahead.
Kodapants,
Hugs to you also. Do not worry too much about food now. Things were return to normal once you come off steriods. I hope things get better.0 -
Kodapants and Angela,
I'm thinking of you both. I will hope for better news soon. xo
I am having a rough day. I had an MRI today on my brain and I am confused on the results. Since I go two hospitals, they cannot compare results until I go and bring the discs myself.
I had an MRI in Feb with the better facility (Hospital A) - results were no progression, but looked hazy. Could be necrosis/tissue death
I had an MRI today with (Hospital B, who doesn't deal with radiosurgery - results progression, as tumour looks bigger then the one MRI they did in November.
Just confused here, and quite upset. I don't know what to do. My appointment to see excellent Dr. in Hospital A is for Monday at 7:45am. I have Easter, a birthday party for my baby who is turning 2 on Saturday. I want to enjoy this weekend, but I'm afraid my worry will take over my thoughts. I'm feeling down. I do, however, have two doctors who think this is no reason to put up red flags at the moment. I feel like, if I just had an MR done in Feb. and it was fine, that it should still be fine.
Not sure what to do for the next 3 days. Oh and I'm back on 4mg dex. But my headaches have already gone. I was having headaches, here and there for a week or two, but I was sick and coughing like mad. I feel fine now. No headaches, no dizzyness, nothing. I still have vision loss, of course, but other than that, I feel just fine. ????????
Has anyone had an MRI done and the tumour looked bigger and it was just necrosis?
Love confused me.
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dearjilly- I have not had a scan which showed my tumors have grown yet. My RO has been adament that just because it looks bigger doesn't mean it has grown. Scarring and inflamation from the radiation can look like the tumor is growing. Actually, he has impressed this point on me so much that i expect to have a bad scan each time. My point being is that it seems like a very common thing for scans to look bad without the tumor growing. I am going to think that this is what is giong on with you.
I hope you can enjoy the weekend.
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OMG leftfootforward, I love you! Thank you so much for this message. It makes me feel so much better. I really do appreciate the time you have spent to say this to me. I figure it may be just this too. Fingers, toes, eyes, legs, everything crossed!
So many hugs to you! Jill
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I'm so sorry to hear about so many people in a bad spot right now. Heavy stuff.
Angela, I hope you get on top of the situation and return here. I hate to think of you going through it all alone. I understand wanting to simplify and focus, but we're here for you.
Koda, I'm sorry you're having to be the trailbreaker with that surgery and related stuff. I can't imagine what that's like. And trying not to cough on top of it all. Jeez. I hope each day brings improvement--and that the steroids don't keep you from sleeping. Thanks for sending the report. You are a trouper!
Dearyjilly, I'm glad you feel reassured. Sounds like you don't have symptoms, so run with it! Don't let the worry creep in and spoil your weekend.
Hang in there, everyone.
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Supportive Hugs and Prayers to everyone on Good Friday. I have decided to cancel WBR at this time. To risking loosing good brain tissue. I will check with Oncologist next week. Still healing and oozing from the back of my head, can't wait till that stops.
Koda
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Not the news I was hoping for. I went to the Doctors today and they seem to think it's progression. They can't say for sure. They say the tumour is so close to the brain stem, that they are not sure whether or not they want to biopsy. They said that 5 doses of radiation may be the recommendation, and that I go on Xeloda (? I think). I am interested in IT herceptin, but I need to do my research, as I'm not sure what the criteria is. I'm scared, sad, but trying to stay possible, especially reading what you ladies have gone through. I'm just hoping it's still necrosis.
Not sure what else to say, other than I don't know what the heck is going on with me right now. Doctors are having a chat about me at 1pm EST, and he will call me back to let me know what they think. It's my decision, but I tend to go with the doctors, but that scares me too. Feeling a bit lost and confused.
Love Jilly0 -
(((Jilly))) I hope the docs have good answers for you.
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I wasn't sure where to post this. But I know Stephanie was often on this thread. If the admins need to move it I understand.
I am sad to notify the ladies on this thread that our friend Stephanie Smith "ssmith37 " passed away on March 25th. She has a caringbridge if you go to her profile there is a link there- for anyone who would like to leave a message for her family. Thank you.
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Jilly, Scary news. There have been so many rescues from scary news that we never know. Hoping yours is a rescue, for a good long while. But, I'm sorry you are in this painful limbo.
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Thanks my ladies, I am now hearing that they may biopsy, if I know all of the risks and I agree to it. Like I said, the tumour is deep. Figures.
I'm also looking in to clinical trials, Afatinib and Geron Brain to see if I qualify.
I feel lost, yet hopeful that this is not progression and simply necrosis. I hate not knowing for sure.
Hopefully Limboland passes soon.
xoJill
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Hugs Jilly. I am on Xeloda and can tell you what I have experienced. Just PM or write me here.
so sorry you have to go through this. The waiting until you have a plan in the worst. I will keep you in my thoughts. There are so many things out there that I hope you have many options and can find one that you feel comfrotable with. That is the most important thing. I will check back in later to see what news you have.
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Wow, Stephanie had that painful reaction to WBR. Im so sorry it wasnt worth it it for her and family.
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I'm very sad to read about the passing of Stephanie. Thinking of her.
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Hello!
I was sent here by someone on the bcmets.org site. Progression this time is to the brain with many tiny (
Because of the number of mets WBR is the only option. The plan is for three weeks.
I was diagnosed with DCIS in 1999; Stage 3a lobular in 2003, mastectomy, ER,PR+, HER2-; mets to the liver in December 2010 and mets on Sunday.
I would love to meet you guys, hear your experiences and advice. This is so scary, both the amount of progression and the fact that it is now in my most vital organ. Although treatment seems reasonable.
With WBR did everyone have permanent hair loss? I think the radiologist said that happened in the third week.
How did you feel? We are going on a cruise right after the radiation and I wonder if I'll sleep all day - I already sleep 12-14 hours a day now.
We're there any products you used that helped with side effects? I was pretty raw when they did the chest radiation, but that was six weeks.
Thanks,
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Jeanie - welcome although I'm sure you'd rather not be here
I had brain mets in early November and had 10 WBR treatments. My only side effect was hair loss. They told me it probably wouldn't come back but slowly, surely it is returning. It's a bit of a funky growth pattern but I have coverage coming in everywhere. I had my hair stylist trim up my neckline (which didn't fall out) and then even out what she could. She tried to add some color but she'll have to try again with something a little stronger as it really didn't take.
I finished WBR on the Monday before Thanksgiving and my DH and I flew from Boston to Las Vegas on the Friday after. I did ok - took a rest period in the afternoon but I was able to go to a show, spend time in the casino and enjoy a few good meals. We also went on a hot air balloon ride - a bucket list item.
I think you'll do fine on the cruise, you can take things at your own pace. So go and enjoy!
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