Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Brain Mets Sisters

1…1213151718…280

Comments

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Side effects in full force. Ugh.... Looked at myself in the mirror and I am omg ugly! My forehead looks like it was in nuclear meltdown and my face is uck. What the hell???? I never looked this sick when I was on TCH. I told my hubby that I look like those women in a religious sect who wears homemade hair clothes. Ugh.. I need a pick me up!

  • lassman
    lassman Member Posts: 49
    edited February 2012

    Tiger - blood,

    Yep - been there! My face looked like - what can I say - red and zit/pus city. Shudder. I screamed every time i looked in the mirror before i realised it was me and not some monster that had crept up behind me!

    But fear not it does wear off. Mine cleared up after roughly two weeks.

    Lassman

  • pq2
    pq2 Member Posts: 66
    edited February 2012

    Oh yeah it is UGLY. A few weeks after it was over I treated myself to a series of facials...made a difference. Nothing worse than bad skin and no hair. But hey -- it's OVER. 

  • apple
    apple Member Posts: 1,466
    edited February 2012

    I guess I have  a whole new set of sisters..

    I'm starting radiation today.  I've had Xeloda sisters, stage 4 sisters, Femara sisters, chemo and radiation sisters..  I have already pretty much lost my hair due to a new chemo, steriods are counteracting the fatigue so I am good to go.

    Lore... your post about your mother was just awesome.  so heartfelt. You are so good to care for her so lovingly.  I wish you and her the best.

  • Tiger_Blood
    Tiger_Blood Member Posts: 83
    edited February 2012

    Good luck today Apple. The whole getting the tx part was not bad. Just the pasta strainer mask felt a bit uncomfortable sometimes. It would just depend. We have not had a proper winter here in Ohio and the allergies and sinus problem here is dreadful so when my face would swell the mask would be kinds tight. The whole tx was 14 minutes. Don't be surprised if you smell weird things and see bright lights. They never told me that albeit it was kinda cool.

    The steroids did a number on me. I am in taper down mode. Decadron gave me a but of psychosis. I mean one day when we finished we went to chica fil a to get lunch. My hubby works on the road most of the time so he was on a call, driving, and literally eating at the same time. He ordered a chocolate milkshake took a drink and placed on the dashboard. Next thing I know he takes a left turn and chocolate milkshake is all over my lap. I LOST MY MIND. I threw French fries at his face.

    Totally NOT a normal reaction from me. Now he jokes...... Your not gonna throw French fries again are you?

    Tomorrow I get my port. I am not looking forward to this. I went a year without one! I start navelbine and herceptin.

    Good idea about the facials..... Maybe I will call work today and beg for one.

    Apple..... You are gonna do amazing with the WBR. Just drink your wine now because your taste changes pretty quickly and watch the thrush from the steroids. Let us know how the first one goes!!!

  • Survivor2Be
    Survivor2Be Member Posts: 70
    edited February 2012

    I lost my taste and appetite after finishing WBR on 1/18/12. I finally did acupuncture in feb and within a week I was able to eat again.

  • apple
    apple Member Posts: 1,466
    edited February 2012

    about that pasta strainer mask.. should i save it for my kids.. it's really eerie but kind of cool  It would make the most awesome "ghost of mom' mask assembly for Halloween with a black cape flowing behind it..

    no - i think I'll toss it but it IS kind of cool seeing an impression of one's face that looks so very familiar.

  • u2av8r
    u2av8r Member Posts: 3
    edited February 2012

    We're still waiting for the official biopsy result from the mode in my wife's neck, but all other results are pointing towards metastatic breast cancer. So far it's in her lungs, spine and today the brain MRI came back positive. The onc talked to me about radiation. Can someone tell me from the following wording thier thoughts on the results in layman's terms?



    "At the posterior margin of the superior aspect of the right cerebellar hemisphere there is a enhancing mass measuring 6.2 x 4.4 x 5.2mm. This mass is not well visualized on precontrast images. Given the patient's clinical history findings are concerning for small metastatic focus."



    From what I've read this mass seems to be very small (mm vs cm). Given everything else, how serious is this?

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

    Apple and Tiger, I just had to keep the mask. It looks funny under your shirt like a pregnant belly with a face.

    u2, I cannot interpret reports but I must say that I believe your wife and you deserve explanations until you are more satisfied. Those doctors make a lot if money.

  • apple
    apple Member Posts: 1,466
    edited February 2012

    u2av8r.. that mass does sound small - i think they like to 'go after' any brain metastisis right away tho.  (much smaller than my 6)

  • Rohm
    Rohm Member Posts: 18
    edited March 2012

    I'm back!  More mets, growing in the same spot and two new spots.  So it is WBR for me.  I'm two days in to 14 days of treatment.  Here's hoping it really kicks some cancer ass this time!!

  • JillThut
    JillThut Member Posts: 97
    edited March 2012

    Hope so, Rohm.



  • Lore81
    Lore81 Member Posts: 13
    edited March 2012

    Thanks apple..... I just logged in to update on my mom......well no good news ....she had a scan and it showed lesions in lung and liver now as if brain mets wasn't enough so she stopped xeloda and we decided to start a new chemo gemzar/carboplatin. She had one treatment on Monday 20 and ended up in the hospital next day...I took her in because she was short of breath and fast heart rate....really scared me. She told me she didn't feel good and to take her to the er. They said she had fluid around her lung that could be the cause and they drained it out. Her heart rate is still high in the 120's. She wasn't eating much in the hospital ....she got out Friday and ever since she has gotten worse she's not herself anymore. She has lost her apetite,she sleeps alot, she cant even walk anymore without assistance. She is just in bed all day. She sometimes says things that don't make sense and she stares into the air. I ask her what shes thinking and she says nothing. She was due for a chemo this monday but  I didn't take her in. Today the dr saw her and he recomended hospice. He said she may only have weeks. This time I agreed for hospice. It feels like we're giving up but I just can't see my mother suffer so much anymore. I asked her what she wanted and she replied with a shrug and said whatever ya'll want to do. She did say no more chemo though. It's just so hard for me that I'm typing this through tears. We met with them tonight and the nurse was very nice she even got her some medication and stuff we needed and just left about an hour ago. Tomorrow we meet her primary nurse and get some more stuff like oxygen. Mom will be staying with us at home. I love my mommy so much what will I do without her? I tell her I love her everyday and I stay the night with her ever since she got out of the hospital and Im with her all day. Good thing I live right next door. Today she ate ok but doesn't take in much fluids. I just can't beleive this is happening. I wish it were all a dream. We are all grown up except for my youngest sister who is only 12 shes still a lil girl. I feel so bad that she will be without a mother. It breaks my heart......... I hope everyone the best on here.

  • pq2
    pq2 Member Posts: 66
    edited March 2012

    Praying for you and your Mom Lore

  • alesta29
    alesta29 Member Posts: 240
    edited March 2012

    Lore

    So sorry to read about your mom. I don't think hospice is about giving up and I think you are doing the best for your mom. She doesn't want more chemo and the hospice team can now focus on getting her what she needs to make her as comfortable and pain-free as possible. 

    It's so good that you can have her at home just now. That's what I would want when my time comes; to be at home with the people who mean the most in the world to me. Hope that you are getting some support from your family, friends and healthcare staff. I know it is so sad to think of your sister growing up without a mom. My daughter is 12 too. She will have you and you will be able to remind her about all the great things about your mom as she grows up.

    You're doing great by your mom. Hang on in there and be sure to pop back for a chat / vent / whatever any time you need to.

    Big hugs to you all

    Laurie x 

  • apple
    apple Member Posts: 1,466
    edited March 2012

    sorry about that Lore. big hugs and prayers to your family as you deal.. They told me that 'staring' is a forewarning of seizures.. you might google that to see.  They told me to take an extra Keppra if that happened.  I had a rather massive one last year about this time.. It kicked me on my butt. I was just about comatose for 3 weeks, altho I could get up to use the facilities and eat a bit... none of us want to see our loved ones suffer.

    My daughter is twelve.. very independent and all but she loves me so.  I feel sorry for you all.  I miss my mom dreadfully.  She was the sweetest thing.

    still didn't lose any weight.  (can I talk to a woman?)

  • banjobanjo
    banjobanjo Member Posts: 187
    edited March 2012

    Your mother might not be making sense but she understands that you are there with her, she knows the touch of your hand and she is surrounded with love - that's a really good thing.

  • MCTHO
    MCTHO Member Posts: 44
    edited March 2012

    Lore81 - You may not be able to do much to help your mom physically, but you better believe all the love you are showing is making a difference!  Keeping you in my thoughts.

  • tina_uk
    tina_uk Member Posts: 5
    edited March 2012

    Hello ladies

    may I join you please?

    I'm 34 and have tnbc. I have been fighting this disease since jan 2010 + have this week been dx with multiple brain mets :( I have widespread mets elsewhere too and things have progressed alot since Xmas whilst on halaven. I have new mets in spine+ mets have worsened in liver+ nodes. Also lung mets (early). Main struggle at the mo is breathlessness + coughing as I have some bodes restricting my right lung from fully inflating.

    I have been to see a top neurosurgeon in London yesterday but ye sadly confirmed gamma knife is not an option + that WBRT is definately the way forward. It is my worst nightmare but if it's for the best I will do it. The largest tumor is 19mm + there are a few a but smaller but the MRI yesterday showed widespread activity allbeit very early + tiny.

    I have the planning session on Monday + 5days of rads soon after. I'm scared + would really appreciate any advice, tips, warnings (!) that you might have for me.

    I will be starting on capcetabine soon- I'm trying to convince my rads onc to let me start straight awaybut he's keen to hold back til after the wbrt. I'm anxious about my lungs mostly but liver too + feel it would be foolish to ignore my other organs in the meantime. Did any of you ladies gave chemo whilst having wbr/ gamma + how did you find it?

    Any hairloss advice would be great too. Does it go straight away or after? Isit patchy or full hair loss? Just wondering if I need to get my wig sorted now or can I afford to wait a while?

    Thanks in advance for any advice you may have.

    Best wishes to you all

    love Tina x

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

    As I said on the other thread, this is unfair. I hope you find helpful info here as I have. The outcomes for WBR are impressive in many cases. ((Tina)))

  • MCTHO
    MCTHO Member Posts: 44
    edited March 2012

    Hi Tina!  Sorry you had to join us but we're here to support one another.  When they give a person WBR they usually put chemo on hold until it is all done because of increase toxicity.  Most people lose their hair but it will usually grow back--but very slowly!  Please keep us up-to-date!

  • Rohm
    Rohm Member Posts: 18
    edited March 2012

    Hey folks, I have a question for those who've had whole brain rads...  Has anyone experienced significant hearing loss?  I can't hear a thing out of my left ear.  My GP checked it out, and it isn't just wax, there is more going on.  I just had an MRI and it didn't show anything that would explain it either.

     Has anyone had any experienced with hearing loss after rads? 

  • MCTHO
    MCTHO Member Posts: 44
    edited March 2012

    Rohm - My ears had a plugged up feeling for about three weeks.  Antihistamines seem to help.

  • klk2004
    klk2004 Member Posts: 3
    edited March 2012

    Rohm - I had hearing changes after WBR.  I had difficulty hearing and there seemed to be train off in the distance when I laid down at night.  A kind of constant white noise in the background.  For me it took a couple of months to clear up. The Radiologist said it was fluids in my head and that it would eventually go away.  It did.  It just took longer than I expected.  I hear fine now.

  • julie26
    julie26 Member Posts: 6
    edited March 2012

    I finished WBR in October. I have fluid in my right ear. I cannot get a tube put in it since I'm on chemo (per Onc.).  I can hear but not as well as I used to. I also get the "train sound" but describe it more like a helicopter. Occasionally my head will throb or have pressure.  Radiologist told me not to worry about it.  I had 3 brain tumors and only got about 50% shrinkage from the WBR.  I am scheduled for Stereotactic Radiosurgery next week. I got my mask done yesterday. I am not looking forward to that.  It's a little scary.  I'm trying to stay up beat. It's hard when I sit alone all day. I have too much time to think. I've been dealing with cancer for almost 11 years and have been Stage IV for almost 3 years (mets to lung, mediastinal lymph node, chest wall and now brain).  I could sure think of better things to be doing! 

  • apple
    apple Member Posts: 1,466
    edited March 2012

    that mask is weird.. no?  one is certianly battened down for the punch.. they told me I would have audio issues most likely.. (I have 14 rad sessions for about six 1 cm tumors) and am on abraxane (a chemo) at the same time.   I am taking off 10 days for vacation and the oncs think i can maintain this schedule..

    not fun.  I am never depressed and today has been awful.. must have been the grey snow.

    During rads i did hear a couple random snorks.. like a monkey in a jungle.

  • kalaoamom
    kalaoamom Member Posts: 15
    edited March 2012

    Sending prayers, positive energy and healing to all who have posted over the last week. I have finished 14 of 25 so I am in the home stretch. My hair has started shedding today. I sometimes feel a little light headed and a little bit off but the supplement nausea ease helps a lot. Definite fatigue. continue to work everyday at my own business. Can't wait for the next 2 weeks to be over!

  • chainsawz
    chainsawz Member Posts: 113
    edited March 2012

    I just finished my 15 wbr.  I didn't have any ear issues....just some nausea controlled with pills...... and some fatigue....and of course, a little radiation rash.  The cream they gave me cleared it right up.  It wasn't as scary as I always imagined it :>  Now I have to wait for the next mri for the results....ack!!!!!

     edited to say that I spoke too soon, the backs of my ears and forehead now look like hamburger despite all the creams the doc gave me,  I'm now using aloe vera with lidocaine....ahhhhh!!!

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

    Kaolaill second that. I admire and am inspired by everyone. Chainsawz, you da bomb.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited March 2012

    Still got hearing problems and 'train' noise even though I finished my WBR in November - I have heard it can go on for months and months sometimes.

    Tina_uk: I have sent you a PM. 

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.