Brain Mets Sisters
Comments
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Lisa posted on Fitz's "You really don't know..." thread a couple of days ago
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Question- had last dose of TCH (for now) on Monday... Of note I have mets to liver, but as of Monday it feels like someone is squeeZing my temples together, painful at times. Should I be worried?
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Kristen - wish there was a definitive answer for you but there isn't.
I was surprised by my diagnosis as thought I was having migraines due to lack of oestrogen. But brain mets it was. I didn't really have any symptoms except for the occasion migraine and my radio-onc has said that the brain mets may not be the cause - I may just be having migraines.
I suppose I'd advise you to keep an eye on it and see how you're feeling over the next couple of weeks. More likely to be SE's from the chemo which hangs around for a bit.
Laurie x
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We haven't posted in awhile. Life got a bit busy with our trip to Ireland. We absolutely loved the trip and met lots of wonderful people on the "emerald Isle". I really should tell you more, but I am just so tired right now.
Di started getting headaches about two weeks ago, with added nausea and some fuzzy Vision. Pet scan showed a lesion in Spinal cord at C4 and suspicion in brain. CT scan confirmed at least 8 brain mets and a spinal cord lesion(this is the one that has all on edge) She had been on Xeloda and Tykerb.
She started WBRT and Spinal radiation yesterday. 17 treatments spread out due to a Sister's Wedding and her trip to Disneyland with her two boys and previous radiation for Hodgkins. Chemo has stopped.
Here is my question(s). Di progressed on TH and TCH and now the X/T. What other chemo strategies should we be looking at. The X/T kept most of the other mets stable except for one on her adrenal gland. Would you consider staying on this or does one tumors progression suggest you should switch cocktails?
Does Di have to stop Driving while being brain tx'd?
How soon after WBRT do they do another scan to see if regression has occurred?
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WBR made me very very tired. I took short trips on back roads during non busy times in my car and felt fine, but i suspended my long trips downtown and out into the country. I have a son who is learning to drive (he's had a lot of practice). I pay him to drive for me. I've been feeling so good lately (at least 2 months out from WBR) that I have been driving without restriction. I can tell if I feel a bit off and do not drive as much as before.
I look for flashes of light or funny sounds.. I don't experience them, but was told they were symptoms of brain 'activity'.
I'm sorry your wife is having trouble lovehertons. She should discuss driving with her docs. My radiologist thought I would have no problems but my onc. was astounded at my audacity and told me not to drive till i got my scan results. I have another scan upcoming in about 6 weeks. (there was a 3 month lapse of time between scans).
Chemo works with cancers but few cross the brain barrier and i think they rely radiation for the brain heavy work.
Wish her the best for me please. I'm glad you went to Ireland and had a great time. My husband offered to take me to Wisconsin but I am passing for a bunch of reasons... mostly my jobs.
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Thanks will keep that in mind! First time having se like this! Time to pray for the best! Thanks!
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Thanks Apple, I truly enjoy your posts and have followed you since I joined. I love your clarity in the face of such adversity.
Di continues to keep a very positive outlook. It truly wears on us day to day, but we plug along. We bought a house on Monday and Diane is getting really excited about putting her spin on this fantastic ole victorian. I had to slow her down a bit, I was afraid I was going to come home from work to a garage full of new paint and window treatments even before we closed.
Best of luck to all. Pat
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lovehertons... your wife will have plenty to do.. nothing like not being bored. I want to be full of leisure but not bored at this point. Imagine a whole house to decorate.
Seriously - check out this calendar of prints. I am into original artwork but found this particularly calendar full of mountable art.. maybe for a back stair way or something. i think they are beautiful. I own the calendar, the colors are so very rich and vibrant.
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Kfontaine,
Keep an eye on the temple pressure. I had it and it turned out to be water on the brain. Had to have a shunt put in. This will only happen if you have brain mets though.
Good luck to you.
Lassman
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Reesie came.to.see.me.at the.jersey shore! Ill never forget sitting with you at the chatterbox and on the boardwalk looking out over the ocean.
Im puffing.up like a blowfish on all the good food.
More.fun to.come. the naps are.getting a little.longer.though.....0 -
hi again! Jill, the xeloda is not treating me any better - so we're cutting back another pill to two in the morning and evening. My onc wants to keep me on it but not if it's going to make me so sick. I have an MRI scheduled in a couple of weeks - first one. I just got my tissue expander out and a regular implant put in last week so I could get MRIs. Funny how the end result is the same but the reason for doing it is different now.
hope you're all enjoying the weekend - it's a three day one here - Monday is King Kamehameha Day.
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I am resubmitting my original post here as suggested. I talked to the Neurosurgeon and he seemed a bit concerned. I had a brain MRI last month and was scheduled for another next month. He wants to do it now. I asked if that was a little soon and he said unfortunately, brain tumors can grow very quickly. Obviously, I am concerned and of course a little scared. I'm assuming they will be calling me in the next day or two to schedule the MRI. Anyone else have throbbing or pain after WBR and SRS?
Original post: I was diagnosed with brain mets (3 tumors) in October 2011 and had WBR. Tumors decreased to about 1/2 in size. Had SRS in March of this year. Last Brain MRI showed no change in tumors since original radiation. The Neurologist said that it was good they were stable and that there were no new tumors. I have a follow up MRI coming up in July. My concern is I get throbbing in my head and sometimes a dull ache. It comes and goes. I may not have it at all one day then maybe once or several times other days. I am of course concerned and a bit scared. Has anyone else experienced this? I have read about necrosis and it makes me wonder if that could be the problem or maybe the tumors are growing. Then I try to rationalize it and say it's just side effects from the radiation. I am currently on Gemzar every other week for lung mets. I'd appreciate any comments. Thank you.
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Good morning Julie. I had wbr in March. I still get headaches. My onc. said we will do another MRI if and when I have new symptoms. I am not treating any new brain mets. Enough is enough for my noggin. I.m still doing chemo, so I don't know what is causing what. I take advil when the headaches get to me. ( About 4 times a week) I am trying a new anti nausea drug, and guess what? Side effects are constipation and HEADACHES. I always wish i had answers!
On a lighter note, I have 6 more sleeps, until I am laying on an underinflated raft on Maui. I don't know how my stomach looks so gross, when I lost another 4 pounds, in a week. I am down to 126 lbs, at 5'8". I want my appetite back. The ONLY thing good about the steroids, was my insatiable hunger. Now I make myself eat. Makes me mad.
Try not to worry Julie. Never live things that could be bad, twice. This stupid disease, does NOT get everything. Hugs Jodi xoxoxoxo
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Apple- you look great in the picture. Much better than my football head and linebacker neck and shoulders.
Jenn
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Julie, try not to upend your life with worry before you know you have something to worry about. I know, MUCH easier said than done.
Jodi, you packed yet?
Looks like my doc is going to have bad news to give me liver-wise on my last appt with him. I'm hoping the radiologists down at his practice will not agree somehow with the folks at the imaging place.... I have big plans for July; chemo not being one of them.
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Hi PBJ. I am not even close to being packed. I did some on line shopping and left everything in the box it came in. I will dump it in my suitcase and call it a day. It's Hawaii. I will buy what I need there. Obviously I won't be packing my hairdryer, straight iron etc. I know i only need jammies, swimsuits, and summer dresses. Really could be carry on. Our 18 year old daughter packed a 55 lb suitcase for Hawaii yesterday. There is no talking them out of ridiculousness!!! She won't wear 90%.
Have a great time in July. You are right. We have stuff to do!! xoxox Hugs Jodi
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it sure is easy to overpack.. you can always just buy stuff there.
Anyway.. i had pretty good news from the doctor.. well good and bad. My radiation really worked well.. there is a small tumor left
i do have to have a mastectomy.. the other side. I am going to go on halaven for a while to shrink it up before surgery. All in all, I am happy. I thought i was going to die in June or July.. the doc. seemed to indicate i could be around for years. My daughter can go on her vacation. I still won't have hair but say la vee.
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Hey Apple!! I want my hair back too. I am always bald because I cannot tolerate een the lightest headwear. Doc said 6 months for hair to come back after radiation. Does this mean I get hair for my granddaughter's 10th birthday?
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Yea, Apple! Hope the Halaven shrinks the bejesus out of that tumor. And what grand news on your brain! Enjoy... Paula
Six months for hair? That seems like a long time, but it's not like I haven't been through it a jillion times. I don't know why I always think it'll come back faster than it ever does.
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Apple Hope halavan shrinks it up to nothing!
Happy the radiation worked magic for you.
Cheryl
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doesn't halaven make you lose your hair anyway?
can't win for losing.
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Halaven has thinned my hair. If i work on it, i can style it to look good enough. My friends say it is fine.
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Apple,
Great news on the noggin. I would definitely have a Pina Colada weekend!
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Hey everyone, I know I never address treatments, meds, etc. Please know I really wish the best for everyone. I just happen to be one of those weird people who cannot stand medicine or any of it's jargon. It causes physical repulsion in my guts. I have always been this way. Kind of ironic. Our kids joke about how difficult it was to get a simple Tylenol from me. I never thought they were truly sick. Maybe they just didn't feel good!!! Knock on wood, they are physical and mental specimens!!! Just wanted you guys to know, I am very concerned, I just can't talk about those kinds of things. I am always on your team, even if my ears are plugged and I am closing my eyes really tight!! Hugs Jodi
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Hi...I joined the brain mets club last year and just want to say that I love this thread...you are all amazing ladies!
Nancy, I second Jill's comments on Gamma Knife...I really had no recovery period to speak of even though they tell you you might need two days "off" afterwards (as if any of us get a day "off," right!)
I guess they make it seem like a walk in the park since everything else we have to go through is so much worse. But you will sail through the GK! All the best to you on the 24th!0 -
I had havalen and lost all my hair but it was really thin after radiation, it started growing back in after the 4th cycle but i shaved it off because it was so patchy looking and scarves etc were more comfy without hair. Finished havalen in January and had my first haircut yesterday :-)
My hair has grown back thick and curly/wavy. I really like it at the mo but I'm not going to get to hung up about it because who knows how long before its gone again!
I will try to post a picture butP my pc is out if action so in posting from my phone
Mx
Ps I'm feeling much better than last week. Doc thinks all my moans/aches/pains/ strange blood tests may have been faslodex causing tumour flare - I do hope so, because Wouldn't that mean its working? :-) More blood test + MRI of brain next week. Always waiting, waiting, waiting for next test results. Note to self try to follow own advice - see below!!0 -
5 more sleeps until Aloha. It's coming up fast!! Have a lot to do. Eyebrows, eyelash weave, pedicure, manicure, nairing etc. I think i had better get started!! I guess packing is important too. Hugs to all Jodi
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Jodi, do you still have any lashes, brows? Or are yours a DIY thing? I'd love to have mine back; they really never came back after 2006....
You know we'll want some pics from the trip....
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I am so excited.. i teach two sisters.. they are my favorite students. anyway, their family adopted TWO more girls (total of 11 now - about 1/2 of them are handicapped in some way).. so i get to teach one of them and i get to meet her in two minutes.!
Anna, from Texas. her little sis IS quite handicapped. She won't be coming, but I am looking forward to meeting her too.
ding dong.
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When I first lost my hair, I lost every hair on my body. In my nose, ears, on my arms etc. Freezing kind of naked! Now only my head is bald, supposedly from the one dose of taxoterre? and the radiation. I kept my brows, lashes and body hair. Even though my pubes are now straight! too much info?
My problem is my right hand, dominate, is jacked, so putting on mascara can be treacherous. I am giving the lash girl our coast house for a weekend, in exchange for the weave. Otherwise 300 bucks. Yikes. Hopefully they'll help create a face!! Hugs Jodi 0
