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Brain Mets Sisters

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Comments

  • Angela-R
    Angela-R Member Posts: 109
    edited March 2013

    Hi ladies



    Just checking in.

    Had a lovely weekend with family and "old" girlfriends...so therapeutic.



    See MO this morning and will ask for all rad options, best forward thinking rad onc, and a neurosurgeon (thanks for advice). Probably a week until I really get moving but am hoping rads to cerebellum only, not wbr yet, I don't think gamma will do it for me but we will see.

    Am slowing catching up on past posts that have been so informative. No sense me asking questions that some amazing ladies have answered over the past few years.

    Will keep you all informed.

    Cheers

    Angela

  • Kodapants
    Kodapants Member Posts: 18
    edited March 2013

    Hi K-low,  Tomarrow I have a appointment with oncologist, he will referral to brain surgeon and rads doctor. So who knows that could be another 2-3 weeks to get into see them. My tumor is Lg at 3.5 x 4.5 so it might be too big for surgery. I did have to go to work this morning and just couldnt swing it and had to ask to leave early. Granted I work with other nurses and who are suppose to be experts at cancer. I can barely talk right, muscle weakness, brain pressure and no sleep. So I got home at 1030. took 0.5 mg ativan a small drink and did settle down to sleep a few hours. I do feel better. Hope for allthe answers tomarrow. Thank you all for your support....I think the prednisone is making me rageful??

    koda

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2013

    Oh Koda, what a trial.   Just want to hear that you have good people in your corner.

    No chance of disability...?. did you call HR?

    Much love, K-lo    /  kathy

  • formygirls
    formygirls Member Posts: 154
    edited March 2013

    Koda,

    If you are having these symptoms, insist on an appt with the rad onc next day or same day. 2-3 weeks is too long IMO. Many here with brain mets have started treatments soon. In my case, it was two weeks from my brain MRI to gamma tx. In those two weeks I got a referral and I met with the rad onc, neurosurgeon, got a high res MRI, and then did CT so they could do mapping for the radiation. BUt i was not having any symptoms. I hated waiting so long and was very frustrated.

    I think you mentioned you are a nurse so you know the system better than most of us but you have to stand up for yourself. I am learning that the hard way. I hope you get an appt and tx this week so you can feel better soon.

  • Angela-R
    Angela-R Member Posts: 109
    edited March 2013

    Hi friends. An update from me.

    Met with a really good young rad onc who explained everything really well to us. Given I have no evidence of disease elsewhere (as of last week!) and am otherwise fit, he plans to do 3 weeks of wbr to really give me a good chance of getting all those little ones hiding there. Then we scan and either resect or target any remaining lesions. They can see 4 in the cerebellum, but possibly a couple more. Largest is 2 cm so no wonder I was walking into walls. Was measured for my mask and start tomorrow or Wednesday. He consulted with a neurosurgeon whilst we were there and they meet weekly as part of my team.

    So I guess it's as good as can be. At least its moving quickly.

    Will keep u informed and thanks for the advice and support.

    Cheers Angela

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2013

    Angela, that sounds so positive.  Welcome to the growing cerebellar club.   Sheesshhhh!

  • Kodapants
    Kodapants Member Posts: 18
    edited March 2013

    HI, I have appointment with Oncologist and im sure in his time he will refer me. So this morning I called the Surgeon and Radiation MD to make my own appointments. I'm in limbo and as reading other peoples stories may be Im jumping the gun. Shoud I start term disability today. Wait...Should I contact SSI and start a application as I know it takes a long time to get excepted. I feel like I could still work with a lower load of patients. I know the other nurses won't like it at all. There is no understanding and or compassion. I do believe you only have TRUE compassion and understanding when it effects you personally. I have always believed all people where all good but I believe to a certain point.  Have a great monday!

    Hugs koda p.s. thanks for your support

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2013

    Hi Koda,

    Please forgive if you already know all of this......

    Are you already using FMLA?

    FMLA Family Medical Leave Act

    You qualify for this more than anyone can ever qualify!

    As a former RN myself, I would immediately tell my boss that I need long term disability. Actually telling HR first is good because you are now clear for FMLA and no one can touch you for taking off ANY day or every day. Breast cancer is a red flag for all of these rights.

    You deserve to save your energy for treatments. You're the patient now. After telling them you are taking FMLA and having HR immediately help you apply for disability, you can apply for SSDI. it takes them a short time to approve you with your doctors notes, but the checks don't start for 6 months from the time you are too sick to work. So like 6 months from today.

    I was able to get my employee retirement right away. When I called them they were wonderful.

    Resting more can only be good for you.

    Hugs

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited March 2013

    Great advice from Kathy!!!

  • ssmith37
    ssmith37 Member Posts: 16
    edited March 2013

    Hello all.  Today I had my 13th whole brain radiation treatment of 15 and, as you can imagine, my head is blistered and blood red!  The question I have is when should I be concerned?  My head feels like there is a ball of fire in it and it's coming out of my ears!  My ears are so red and burning like crazy!  I took my temp and it is only 99.2, but it sure feels like 104, lol!  I'm sitting here with a cold wet washcloth on my head looking retarded as ever, but it is not helping (although it does feel pretty good).  I also just now took two Ibuprofen.  Will the Ibuprofen help with this type of fever?  Thanks to all.

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited March 2013

    Ask the rad tech or the nurse for some radiation cream. They should have some there to give you, at least some samples. They gave me mine for free. They can also right you a script.

  • ssmith37
    ssmith37 Member Posts: 16
    edited March 2013

    Thanks Tiger Blood. They did give me Aquaphor today. It helped with the skin issue, but not the inside burning up feeling.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited March 2013

    Ibuprofen should help with the "fever" and any pain.

    I had 10 WBR sessions and I didn't have any burns or sore spots - I still had hair, I wonder if that made the difference.

  • ssmith37
    ssmith37 Member Posts: 16
    edited March 2013

    Thanks Michelle. The ibuprofen is working. It's down to 99 now. So glad you didn't go through this misery! It really didn't get bad for me until my 10th or 11th treatment. Seemed like the bad stuff hit overnight. Just two more to go. I can do this!

  • braids3
    braids3 Member Posts: 131
    edited March 2013

    got a ? did anyone have rads to breast as well wondering if this will cut down the amount cyberknifes  i can have? thanks

    love to all and blessings too!

    chris

  • ssmith37
    ssmith37 Member Posts: 16
    edited March 2013

    Braids3 - I also had rads to my left breast, but I don't know if it affects the number of cyberknifes you can have.  I wouldn't think so, but good question.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited March 2013

    I had rads to my chest wall and nodes in December 2010.  It did not have an impact on the WBR that I had in November 2012.  No cyberknife treatments yet but I wouldn't think it would be a factor.

  • Kodapants
    Kodapants Member Posts: 18
    edited March 2013

    Good Morning,  Yesterday was a good day. I woke up and before my Oncology appointment I called the Brain Surgeon and Radiation MD.  So surgeon has excepted me for surgery for 3/12/13 and after I heal I will do rads.  The most grateful is my sister and son went with me to hospital to sign up for disability. This stuff is new to me, I have worked at this hospital for 12 yrs, rarely calling in sick. I'm sure the money will be a problem but I will make it though.  My mind is so less stressed, I can calm down some. Oncologist ordered ativan and that has helped.I getting things in order for Brain Surgery next week. Weird........

    So sorry you are having radiation burns, during right breast rads I used Vasoline gauze for oozing dry area. Cool compressmay also help to cool your scalp down. Blessings and hugs to all you amazing women!!!!!!

    Hugs Kota

  • Angela-R
    Angela-R Member Posts: 109
    edited March 2013

    Good news Kota. I also love it when I have a plan. So much less to stress on, time to focus on the most important. Now lets just go get these pesky critters

  • Blossoms
    Blossoms Member Posts: 13
    edited March 2013

    Treatment never ends......I just finished 1/2 brain radiation a couple weeks ago, now I am starting right breast radiation. The tumor that was removed in December did not have clear margins and the nasty beast started to grow aggressively already, especially under my arm. Radiation Dr. said CT scan showed tumor activity exactly where I pointed to...she increased the scope of treatment to 15 instead of 10 because of extent......today I showed the Dr. a small lump I was feeling in my neck :-(.....not part of radiation treatment. Dr. said oncologist will start a chemo right after all the radiation is finished. I don't know if my poor little body can survive all this. :-(. This beast has reared it's ugly head with a vengeance. I am sad today :-( .



    Blossoms

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited March 2013

    I am hoping that I can ask you all a question, although my cancer is metastatic as far as I know it hasn't reached my brain, I have asked the oncologist what symptoms I should look for he just laughs at me....do I need to know symptoms? Although we all know that when we have it we want to believe we will be ok, well I want to know what to look for and what to expect...if it is too uncomfortable or painful for you to talk about, just thought I would ask....thanks...

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited March 2013

    Blondie - I experienced some neurological symptoms - fine motor skills were off, my balance was off and I had some mental confusion.  Some people experience nausea and/or headaches.

  • formygirls
    formygirls Member Posts: 154
    edited March 2013

    Blondie,

    When I was dx with brain mets, I had no symptoms. My onc had me do a brain MRI since I had extensive mets in my whole body and was her 2 positive. My MRI showed around 10 tumors.

  • Angela-R
    Angela-R Member Posts: 109
    edited March 2013

    Blossoms



    What a rotten time for you. It must feel like there is just too much going on to cope. But you will cope. Sounds like your team is onto it, so give them all your thoughts and worries and you can get on to healing.



    I start wbr in one hour. A bit scared, first time. Will go back on chemo straight after recovery and I hope to be strong enough.



    My thoughts are with you fellow warrior. (((Hug)))



    Love

    Angela

  • braids3
    braids3 Member Posts: 131
    edited March 2013

    Bondie- i've had a total of 7 mets and no symptoms biggest one was11 mm. good luck Angela r my the light suround u

    love to all good night

    Chris

  • Blossoms
    Blossoms Member Posts: 13
    edited March 2013

    Thanks for the reply Angela, nice to have someone's nice words. I hope your first treatment went well. I know my first brain treatment was scary. I think my heart was pounding 100 beats a minute. But it got easier. Sounds like we are on the same treatment path. Brain radiation, chemo next. I hope it goes well.



    Hugs and prayers back.



    Take care,

    Blossoms

  • Blossoms
    Blossoms Member Posts: 13
    edited March 2013

    Blondie - extreme headaches would be sign.

    Blossoms

  • formygirls
    formygirls Member Posts: 154
    edited March 2013

    Blossoms,

    I hope you are feeling better today and the chemo and rads take care of this beast in the rest of our body. This cycle never seems to end.



    Angela,

    Good luck with WBR treatments. I hope they are gentle on you.



    I go for my monthly MRI on Friday night at 7.45 pm! I call it my weekend outing:) drinks (constrast)and music ( piping through the headphone)

  • Kodapants
    Kodapants Member Posts: 18
    edited March 2013

    Blossoms, I am so sorry you are going through these setbacks fight now. Cancer is very individual with so many twists and turns.  If I could I would reach right through this computer and hug you tight. Did you have a dbl Mastectomy with node disection? Chemo first, second.  Grade 3 is high like mine. PM me anytime.

    Koda

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited March 2013

    thanks peeps I appreciate it.....

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