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Brain Mets Sisters

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  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    5 more to go! So, was anyone an emotional mess when they went through WBR. My doc thinks maybe it could be the Atavin. I have never taken it before and now I cry all the time. They switched me to Xanax so maybe that will help. I am on a low dose steroid, too! Ugh... I am a wreck.

  • Kemrdx
    Kemrdx Member Posts: 2
    edited February 2012

    I don't know if anyone has mentioned this or not but, I ended up with facial lymphadema.  It started about a month after finishing WBR and of course the onc's being hematologists, knew nothing about it.  They thought it might be a SE of the chemo (taxol/avastin) so they increased my premeds from 2mg steroids to 10mg - didn't work but I had all kinds of energy.  I finally talked them into lowering the steroid dose back to what it was and going to an ENT who told me it was lymphadema as soon as he saw me. He also mentioned dry mouth, I guess both are very common with head and neck radiation.  Anyway, seeing an OT right now and doing massage to my face and neck that seem to be working.  I am having some monor difficulties with balance but I think that is the taxol - I tested my feet on one of those dr scholls electronic thingies and all that showed up was my heels.  Toes are numbish right now so I must not be using them for balance.  OT said they can help my with that.

    It kind of seems to me that maybe these "experts" should talk to one another.  My dentist also said head and neck Rads will fry your salivary glands and cause really dry mouth and tooth infection. hmmm

    Anyway I am 5 months out and still having some SE - still have dry mouth and lymphadema.

    Thanks for letting me tell you my story:) Kathy

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    Started taking a Ginger supplement from my natural path today. Definitely helps the weird head, woosie feeling. 22 to go. Big hugs of Aloha to all going through this.

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Wow I have never heard of facial lymphedema but of course, why not? You poor thing! TigerBlood it could have been the tranqs, for sure -- but those steroids, even in low doses, they are some ugly. Ginger -- this something to hang on to. I bet it helps the tummy too -- Ginger Ale has been a go-for me for months so the supplement makes even more sense. 

  • lassman
    lassman Member Posts: 49
    edited February 2012

    K-Lo,

    Have an appointment on 13 March with the onc. Don't know when the MRI will be yet but will post when i get appointment/results.

    Lassman

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    hi kathy sure do agree with u there..these so called experts are so wrapped up in their shells..makes my blood boil..anyways..glad its sorted for u and u r feeling better..

    question - what is the best way to get rid of nausea after month and a half post WBR,only just started yesterday..?

    thank u..

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    Bestfriend05 second day on Ginger supplement and my feeling of nausea is gone. I take 1 capsule every 6 hrs. brand name nausea ease by vitanica. Hope this helps.



    tiger blood, I have been an emotional wreck and no steroids or other prescription drugs. I cry all the time but due feel I am starting to cope a little better. My doctor recommended atavin

    today for the anxiety and to help sleep. I told him I would wait a few more days before trying. let me know how the xanex is. The longest I have slept is 3 hrs straight in the past 2 wks.

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Only 4 more to go after today. I am starting to feel a little better. The non stop crying is still in spurts but ever since I quit the Ativan it has helped. The nurse said that sometimes Ativan makes you weepy. The Xanax is so much better. I just take a half of a .5 about an hour before i go. I take a full one at night so I can get some rest. The fatigue is starting but I don't know if it is more emotional or physical.

  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012

    Tiger Blood:     We're counting down with you!  Hang in there and have a nice weekend!

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Only 4 more -- you can do this! Glad the Xanax is doing the trick! You may be tired for a few weeks but you'll get stronger every day. Go Tiger Blood Go! 

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Great! Now I have a mouth full of thrush. Ugh.........I wanna just throw my brain against the wall!!!!!!

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    Tiger blood get Ll glutamine powder. 1 scoop in a little bit of water enough to swish and swallow 3-4 times a day. hang in there, only 4 to go and you are done!!

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    You'll get there - keep going...

  • Jane1967
    Jane1967 Member Posts: 7
    edited February 2012

    I just had my follow up brain MRI 4 weeks after 14 WBR, and so far the news is good. I was so worried because I've had this loss of hearing in my left ear since WBR ended. But most everthing is gone or shrunk. There's one area that we'll watch to see if it decreases further in 2 months. So except for this slight hearing loss and still being tired. All my other symptoms have resolved. I regained my sense of taste which was making eating very difficult. I still don't feel quite like myslef and wish I had more pep or energy to do things. It feels like this has been a long winter. I see an ear, nose, and throat doctor later today to evaluate my hearing loss...hopefully its just a lingering ear infection and will resolve ASAP.

    Thanks for all your support on this board!

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    great news Jane! Please post again what you find out about hearing loss. when did it start?



  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012

    Happy to hear the news Jane 1967!  Keep us posted!

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

    Oh Jane WOW.   You must be so relieved.

        Very wise to see ENT.  Good work taking care of Jane!

  • banjobanjo
    banjobanjo Member Posts: 187
    edited February 2012

    I have had exactly the same problems, Jane - please let us know how things go and if you continue to improve.  I'm especially interested in the loss of taste, unwillingness to eat and the hearing loss.

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Thrilled to hear it Jane! The ear thing got better for me but nearly 4 months out I'm still not quite right. Taste takes  while too. Glad you are getting checked out and hope you will post results. So So glad to hear your news. 

  • 3littlegirls
    3littlegirls Member Posts: 17
    edited February 2012

    Anyone on here hear from Bruburn?  I am really worried about her.  She hasn't been returning my emails like she normally does.  I know she is going through a real tough go with WBR.  I was hoping maybe she was reaching out to one of you.  

  • bestfriend05
    bestfriend05 Member Posts: 70
    edited February 2012

    hello all just want to ask, how long did u have to wait for a scan after WBR, my mothers onc refuses to take a scan for another 6 months..! is this normal..

    sorry michelle have not seen quite a few brain met girls for a while and have been wondering if all is well with them, havent seen jintski and tallIM in a while too..anyone know if they r doing ok..?

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Last one done. Got to keep the mask. I think I am going to have a nice big bonfire for it tonight or I can just give it to my hubby for Halloween next year so he can go as Michael Myers or Jason.

    So, now that I am done. What do I expect? I am quite sleepy and lethargic and my head feels like one big sinus infection. Woo hoo!!!!!

  • alesta29
    alesta29 Member Posts: 240
    edited February 2012

    Hi

    I PM'd Jintski at the end of January and she had gone back to work after her wbr. Haven't heard from TallM and noticed she hasn't been on since 15th Jan. I PM'd her on the 24th but haven't heard back. 

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

    Tiger is the mask a huge mesh thing they use to hold your face and head still?   Can you use it to strain pasta??

  • kalaoamom
    kalaoamom Member Posts: 15
    edited February 2012

    yeah tiger blood, so happy you are done. I had #7 today.18 more to go. ugh.....Do you know how much radiation you got over 10 days? 3000gys,? just curious. Please keep us posted as to how your recovery from SE go. when will you get an MRI?

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Tiger Blood -- congrats!! It is such a relief when it's over. Sleepiness and lethargy last a while. Be careful with ears and sinuses, you may need an ENT to check out cause water builds up in the ear. But you are on your way!! 

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    I guess I should have asked about how many gammas they were putting in my head. So, here's a funny story. One of my son's friends mothers contacted me via Facebook and wanted to know if I would like to connect with one of her friends who has been battling bc for about 4 years. She told me her friend went thru WBC and needed a new friend because all hers who had WBC were and I quote "no longer around to chat"

    Mmmmm....insert foot in mouth much? I typed back "like no longer around to chat because they are DEAD"

    She quickly retreated and apologized. I didn't let her get off the hook though. I just told her sometimes we say stupid things. Anyway, the hair is falling out. It hurts!!!!!!

    For those of you who have completed does it come back??????? Question of the day!

  • MCTHO
    MCTHO Member Posts: 44
    edited February 2012
    Hi Tiger_Blood:  It's been a year since WBR and my husband and I could be twins--we both have male pattern baldness!  It's slowly filling in!  Smile
  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Tiger Blood -- LOVE your answer to your son's friend. Love it! I finished WBR at the end of October and I am getting hair back now. I'm expected a full head by about mid-April. 

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

    Did you have gamma too? I just noticed that I have scattered bald spots! Dilemma is whether to never pick up mirror and look at the back if head. Have everyone else see it but I can deny it to myself!

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