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Brain Mets Sisters

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Comments

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Tiger thats awsesome and the nail thing is positive.

    Bestfriedn, again i did not have wbr, but i have flashes.  All my docs know.  Are they frommy eye tumor or brain tumors?  Both are small and I hope that in both our cases the symptoms are not too concerning.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    Thanks K-Lo, yes its quite concerning and cannot put mind at rest, due to see onc next month..dont know if should call him before that..i find that getting to talk to your doctor and discussing your concerns with them is almost like committing something so unnatural..like asking a doc for answers for your concerns u get this look..and make u feel like such fools..really dissappointed with the sensibilities of doctors generally all across..have asked doc so many times for a 2nd referral to a different onc and get such resistance..!! although we have all the awareness walks/programs for patients...there should really be an awareness walk for health professionals too..!!i am sorry about the rant but just had to off load..also sorry to hear about your progression..wish u all the best and hope your treatment comes through with the best of results ..xx

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    K-Lo -- yes on the flashes though mine were intermittent. Unpredictable though in terms of whether they came near the treatment or after. They can be from tumor, or steroids (they really affect vision) or WBR or all three. Depending on your WBR margins they may be getting close to the edge of the eye.

    Bestfriend05 It makes me so sad to hear your doc acts like that. Good heavens, you have Stage IV cancer. Yes discuss before you see him and if you aren't comfortable then look for a new one without the referral? Can you do that? You are allowed to rant. For pete's sake we go through enough without having to get "the look" when discussing concerns. 

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    P.S. -- Ativan or something like is absolutely key. The nurses at Chapel Hill call it Vitamin A. 

    It's light, it will put you to sleep, or not, calm frayed nerves and get you through an MRI. Not addictive that I know about but really, would we worry about that? Laughing 

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    Hello all, found a very interesting article for a drug called dicholoracetate being researched by univerity of alberta in canada mainly for brain tumours..

    http://www.news.ualberta.ca/article.aspx?id=B53BF334EFE64A5CA4190D9CF7BD932A

    it is thought to inhibit the glucose upatke for cancer cells..

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    thanks pq2 for your kind words..yes the rant helped..i am actually here on my mom's behalf..

    wishing u good health and best regards..xx and much love

  • ILoveMyCello
    ILoveMyCello Member Posts: 1
    edited February 2012

    Hi, I am writing tonight for my 56 yr old mom, who is on Tykerb, Aromasin, Herceptin, and Zometa. After her latest scan, her oncologist is suggesting WBR. While she does not have mets to the brain yet, she has some small nodules on the inside of her skull between the skull and the brain fluid that remained unchanged with Tykerb. The Dr says if she goes ahead and gets this done, she will do very well, because the rest of her body showed vast improvement from the previous scan, and mets to brain can be possibly prevented. My mom has good energy and is feeling well-just depressed. Her main concern is being able to finish the school year (she's a teacher, and missed 6 weeks last year). My question is, will she be able to work after the treatments (most likely 10 days)? How long does it take to recover? Thanks!

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    ILoveMyCello...others here will have better answers about working at WBR. I will say it makes sense to have the treatment at such an early stage cause it will zap those nodules right outta there. I will say the exhaustion from WBR, especially after it is over, was overwhelming for me and I'm two years old than your Mom. But if she comes straight home from school and gets a nap -- and it's only 10 treatments, she could do it!  Yes, she's depressed I'm sure. She sounds like the type who will bounce back when she's feeling better.  

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    I have just spent the last hour reading through this whole thread.THANK YOU FOR BEING HERE!! I found out a week a go I have multiple brain mets, found on a scan. Tomorrow is my first WBR. My doctor has recommended 25 treatments. I did not see on here anyone having that many. We all thought I was doing so well...CTC tumor maker 0, CA27-29 at 9 and scans in Dec 2011 showed nothing. Had a headache on same day I saw doctor, nothing I believed to be unusual but he recommended MRI of brain. 4 measurable spots picked up and numerous enhancements. Just got put on tykerb also. Reading the posts have helped with what to expect. Was not told about loss of taste, dry mouth, forehead burn. Only told ears may feel like clogged from a cold and that I should have no problem with driving. I could drive myself everyday for 25 days to my appointments! Glad to know some other things to keep on the radar. 

    I am the single mom of 6 boys. I lost my husband to cancer 3 months after I started treatment for breast cancer in Sept 10. I am beyond scared to death this time. I am an emotional wreck. Does this get easier? 

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Kalaoamom -- bless you and your six boys! You already deserve a medal and you have immediately gone on my prayer list. I have heard of 25 treatments -- it may all depend on how long each zap is. The brain mets creep up -- the headache isn't there and then it is. Yes on ears, yes you should be able to drive but watch that, you will get very tired about two weeks in but a nap does refresh, appetite may diminish, if you are on steroids it may clog up your skin, you will lose hair two weeks in. These are all fairly small annoyances, frankly. I won't say don't be scared because you just are. But the scariness goes away and they have had good results with WBR. Prayers for you and your boys! 

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    Hi Kalaoamom,

    I had 21 daily treatments (weekdays only) so pretty close to yours.  No side effects during treatments - all easily and quickly done - but side effects came after - complete lack of appetite, loss of hearing were my problems and I am still living with them (finished WBR end November).  I blame these on WBR although I have been doing chemo at the same time.  

    The good news is that 19 out of 20 brain mets have gone and the last is a speck. This won't last for ever but was an excellent result so the WBR was worth doing.

    Please PM me if you have any other questions about my experience.  I fully sympathise with your situation and hope you have supportive family/friends to help you through this.

    Barbara 

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    thank you pq2 and Barbara for your supports. Dr felt due to excellent health otherwise, 25 treatments give me best chance to get rid of these. as I wake up this morning I am anxious to get thru this first treatment. I see a natural path whos specialty is oncology so I know keeping my system strong on this journey is going to help.

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Kaola,    this news is  a shock to say the  least.    my only question is whether you can ask about Gamma Knife.   At least bring the issue up, ask if you can see a neurosurgeon there or elsewhere who can isolate the tumors.   I had 8 tumors hit by Gamma and one by linear accelerator.   All one treatment each, Im done.... for now.

    wishing you the best care you can get.

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    kaloamom...u have indeed been through a lot and there must be so much going through your head, all the questions and anxieties...it is very hard to take..! when ever i feel the above i come to this forum and always get answers to my queries...this is a great support network..! hope your treatment comes through really effective for u and my prayers and thoughts are with u ..wishing u courage and the strength to fight through this..giving u a big cyber hug and loads of love..xx

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Just finished my third WBR! 7 more to go......chug...chug...chug

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Way to hang in there, Tiger Woman

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    thank you all. I survived the first one today. Felt just fine. now tired due to being up all nite. K

    LO I did look into the different forms of stereotactic surgery such as gamma. Dr said I had a total of 20 enhancements including 4 which could be measured. He felt WBR would get all. He said this could be looked at later if another option needed. When did SE start to set in for you gals?

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    After it was all over.

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    SE's started about two weeks in and lasted -- well I still have a few and I ended Oct 26 -- but they start to diminish in a month. They probably have you on steroids or are weaning you off them -- don't discount those SE's as well. You are in my God box, stay strong. 

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    6 more to go! Chug. Chug. Chug

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    You know I went in for back rads to day.  I cannot make my Pandora radio work in there for crap.  So Im gonna download some music .  But do you think it will hurt my android smart phone?  The radiation?   Its only 10-15 minutes but I get so tense.

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    They allow me to take my IPAD in!

  • lassman
    lassman Member Posts: 49
    edited February 2012

    k-Lo,

    Can I ask how long ago it was that you had gamma knife? I have just finished gamma for 8 lesions as well and wondering how long it keeps the little devils at bay? My consultant seemed to think it would have killed the tumours.

    Lassman

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    Oh lassman, I wonder too. Had 8 done the week before Xmas then linear accelerator zap to one in late Jan..... have MRI march 6th. I do not believe I have had any neurological symptoms.

    Lets hope the buggers stay dead.

    Kath

  • chainsawz
    chainsawz Member Posts: 113
    edited February 2012

    Lassman...are you taking tykerb???   If I could go back, I would not have stopped taking it when I had lung progression in March.  I'm going to start back asap to help keep the buggers away for a longer time.  I was hoping the cyberknife killed them completely, but I guess that's not always the case...poop!!!  I am on number 4 of 15 wbr...hang in there tiger!!!!!

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    Rooting for u chainsawz, kalaoamom, and tigerblood...hope u sail through your treatment with very little side effects ..!! Keep going girls..!! big cyber hug xx

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    23 more to go and I can definitely tell something is being done inside my head. Feels kinda stuffed like a head cold and woosie and I have only just begun......

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Kalaoamom, Chainsawz, Tigerblood...you can do it. The SEs are definitely worth it. A huge "you can do this" to everyone else doing WBR or gamma. Some think chemo is worse than any treatment but some of the rads are pretty heavy going. Sleep when you can!! 

  • lassman
    lassman Member Posts: 49
    edited February 2012

    K-Lo - good luck for your MRI on the 6th March. Hope they stay dead! Let us all know results.

    Chainsawz - I was on tykerb but progressed whilst on it. Onc won't give it to me again as she says it's not working. I will probably start Navelbine in combo with Herceptin next. Hope you are doing ok with the WBR.

    Lassman

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2012

    OK ty, Lass, you'll get an MRI when, do you know?

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