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Brain Mets Sisters

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Comments

  • uoppal
    uoppal Member Posts: 12
    edited September 2012

    Tilly - Sorry about the blood clots but - congrats on your test results!

  • PJB
    PJB Member Posts: 150
    edited September 2012

    Some good news and scary news on here today! Everyone try to stay well!

    Here's my weird story of the week. I've been having these weird cycles where my left jaw/lower lymph area will swell up, be painful sometimes, numb sometimes. When it's numb, well, if food dribbles down my chin I don't know it. More than once my husband has wiped my chin (you know, like I'm an infant), so I don't eat in public. When it's painful, well, damn it hurts! So my ENT did a CT of my facial bones during one of these episodes (which happen, oh, right about after infusions when I think about it). ENT was stumped. Onc was stumped. They recommended I see a neurologist - altho I'm still waitng for someone to actually come thru with the referral.

    Anyway, I started antibiotics Monday bec. of my "critically low" WBC.  

    So today, after several voice mails pushing on the referral, I decided to see what my dentist thought. She got me in after her normal schedule ended, did some Xrays and poking and prodding. But nothing invasive or that involved very pointy instruments. It is an abcess (probably recurrent all this time) - and  I have to have a root canal (are they awful)? In between infusions. Oh, and the dentist added another antibiotic. 

    But this is what is amazing. Sometimes I forget how awesome people can be. She worked late, gave me her cell, is going to call to check on me, is the only one so far to have any answer for me. And didn't charge me a dime.  

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

    oh Paula, thank the heavens for your dentist. Tell her we love her.  It really does take a village!    You have to pursue every avenue and you did.

    Hooray, another one for our side!

  • banjobanjo
    banjobanjo Member Posts: 187
    edited September 2012

    What a kind gesture from you dentist; that's what I call customer care.  Hope it's sorted soon.

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

    Some have WBR some have gamma.   I'm alone in having eye rads so far, but I'm guessing the effects I'm seeing are similar to wbr?  I wake up looking like Ive been in a boxing match with cauliflower eyes....sound familiar?    Tried cold packs after the swelling maybe I should put them on before sleep....    how long will they stay put, can they damage the tissue further, pondering.....

  • TallM
    TallM Member Posts: 1,070
    edited September 2012

    K-Lo sorry you have to go through that now. You're strong & I hope you will find the answers you need. Wish I had some good ones for you. Best wishes.

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

    Dear Alesta.... my concerns are almost cosnetic but thx for caring. How are YOU?????

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

    Dear Alesta.... my concerns are almost cosnetic but thx for caring. How are YOU?????

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

    Dear Alesta.... my concerns are almost cosnetic but thx for caring. How are YOU?????

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

    Dear Alesta,  no doubt that K-Lo is caring about you now.

    Hope all is well with everyone.

  • Cathy2
    Cathy2 Member Posts: 40
    edited September 2012

    Wow the last three weeks have not been easy. I fell in the kitchen face first, somehow I managaed to lift a arm that saved my teeth! Ended up in ER and CT of chest showed serveral p.e.'s. Busted lip needed stiches, broken nose did not warrant adjustment, but it is still sore and I still have 2 black eyes. They put me in hospital and installed some kind of filter up through my femoral artery. It's my understanding it will remain for 3 months to catch clots. I am on Lovenox twice a day and DH is doing a great job at giving shots.

    Still had no appetite or energy so onc started me on Megace for appetite and Ritalyn for energy. Wish me luck. I hate this feeling.

    Glad to be home though!

    PBJ hope your tooth is better!

    Hope all us brainmet sisters are doing well!

  • TallM
    TallM Member Posts: 1,070
    edited September 2012

    OMG Cathy! What a ride you've had. I hope you heal fast. I too am glad your home. Better than the hospital:) I'm also glad you saved your teeth. Hopefully the meds will help & the filter will do its job. Best wishes to you.



    Hope all have a great Sunday & upcoming week. xxx

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

    Apple how did you know I was thinking about Alesta?  Cool

    Glad to see she has checked in as of 9.29.12.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited October 2012

    Cathy, that's hard, three months, but if you need it you need it.  At least you'll look pretty again by the time you come out!  Hope the filter works well and that you never have this problem again.  Get well soon, best wishes.

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

    i've been kind of busy - just trying to conquer the housework.  6 rooms to go.

  • alesta29
    alesta29 Member Posts: 240
    edited October 2012

    Hey guys

    Had a couple of crap weeks. Neutropenic sepsis after chemo (x2) needed drainage and really tired with no appetite and dehydrated. Ended up in hospital for a week which was the pits.

    Home and managing to eat a bit more. Hadn't realised how fussy I am Wink

    Was supposed to have chemo today but really bad indigestion, wind etc and didn't feel strong enough so hopefully next Monday.

    Thanks for the kind thoughts all. Nice to see you posting Melinda - had thought the worst...

    Lx 

  • TallM
    TallM Member Posts: 1,070
    edited October 2012

    Thanks Alesta:) Glad you are home now & pray for a quick recovery. You need some good times to come your way.



    Ya-my Drs even thought I wouldn't make it when I was in the ICU the first time. I had every possible tube in me on a vent...the works. Well I pulled through that after 3 weeks & was put back in a couple months later with lots of blood clots in my lungs. The ER Dr gave my family a pretty grimm outcome. I came through that too:)



    The last things has been 5 surgeries to get rid of peri abcesses with drains & all. I came through that too & can FINALLY sit down. It's been since March. Oi.



    We've all had quite the journey & many travels we would rather not repeat. And here we are. Stronger, braver, taking one step at a time. I'm glad to be back & catch up with all of you. Take care & best to all. xxx

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

    good to hear from you two.  It hasnt been fun has it.  Thanks for checking in

  • banjobanjo
    banjobanjo Member Posts: 187
    edited October 2012

    Laurie, hope you're back on your feet soon; no wonder you're tired as you've had one thing after another.  You have an amazing resilience.

  • luvmyself
    luvmyself Member Posts: 58
    edited October 2012

    Hi ladies,

    Just had my 3 month follow up with my neoursurgeon and received an outstanding report.  I had 2 mets one on my right side and one on the left side.  We did gamma knife back in June and a couple of weeks ago I had a scary insodent happen where my right fingers up to my shoulder were tremoring out of control.  So up to Mayo emerency room.  We did a brain MRI to see what was going on and the report came back the the met on the right side is almo gone and the one on the left is still shrunking.  This is so awesome.  So now I get to wait 3 months and scan again.  I was so happy as I haven't had a good report in such a long time.

    thanks for listening,

    Jill 

  • Tillycat
    Tillycat Member Posts: 57
    edited October 2012

    Hi all

    Luvmyself - well done :-)

    We could do a happy dance together :-)

    I had my MRI last week. I was in hospital with a pulmonary embolism and it felt like bad stuff was happening so I was a bit worried about the brain MRI.

    Anyway the news is good!

    No new brain mets (first time in a year/4scans that's happened)

    All the mets are shrinking- including the big one that they recommended craniotomy for because they didn't think GK would work. (ha! It did wok!)

    So, so relieved :-))))

    Laurie - I've been so worried about you, I asked Diane (marsden) to phone you cos I was worried that you were not at all well, maybe even worse than you were saying. Are out of hospital now? She said that you were in a hospital near your home being 'well cared for'. Wonder how often she's been in a local NHS hospital as a secondary cancer patient. Local hospitals can be hard work. The Marsden always makes me feel safe, not so much the local ones.

    Big (gentle)hugs

    Tillycatxx

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

    Sigh of relief.    ((((Tillly))))   ((((Jillly)))))))

  • uoppal
    uoppal Member Posts: 12
    edited October 2012

    Great to hear so many people with good scan results!  Sorry to hear about the hospital stays, thank goodness there is something to celebrate too.  I am halfway through my wbr and am surprised at how easy it has been.  I know it is cumulative and builds, but, so far only effect I've had is fatigue.  My hair hasn't come out yet; I'll probably do a buzz cut tonight.

  • banjobanjo
    banjobanjo Member Posts: 187
    edited October 2012

    Great news, Tillycat, good to hear.

  • braids3
    braids3 Member Posts: 131
    edited October 2012

    great news on good mris so totally about no new ones my last one also showed no new ones 1st time in a year  love & blessings                                                                                                                                                 chris                                                                                          

  • uoppal
    uoppal Member Posts: 12
    edited October 2012

    braids3 - congrats to you too!  It is so encouraging to hear these stories.

    I start my final week of wbr today.  I buzzed my hair last week in prep for losing it.  Today I notice it's starting tto come out.  Feeling tired and a little worn out, but much better than I had anticipated.

  • sbidalia
    sbidalia Member Posts: 25
    edited October 2012

    It is truly heart warming to hear about the chain of good news MRIs. Congratulations all. I'm sorry to be the black cloud here but my daughters results were not so good. After a much needed stable period this spring and summer, following WBR around Feb., Suzanne's MRI showed a very agressive tumor in the brain which grew in three months since the last MRI to a size of 1.3 cm. Almost too big for stereotactic radiation according to her doctor, and inoperable due to it's location. They are thinking that it is a regrowth from one that wasn't completely knocked out in the WBR. It wasn't entirely unexpected since either new growth in the brain, or regrowth, are fairly common. But it has been a hard blow for us. They did immediately radiate it and are now trying to decide how to change the IT cocktail she gets in the brain through her Ommaya port. Much of this is new territory because brain mets used to be late stage and there were few studies on IT mets. But thanks to all us pioneers, we are living longer and studies are being done and new drugs discovered. We still believe in miracles.

  • tracy108
    tracy108 Member Posts: 45
    edited October 2012

    hi me again..x

    i have since my last post/questioning finished my chemo(taxetore)and carrying on with hercerptin..hair has started to grow back (like a old man style at the moment) and taste is coming back slowly...

     i have 1 problem and have been trying to get some answers...have even been admitted to a ward for scans(but not on my head)...its my legs they keep siezing up on me..if im sat for a while i have trouble standing ,my legs have a dull ache (not pain) you know when you are tired and you cant get comfortable..that ache...and stairs..1 at a time like my nan (97) would do...and i have fallen a few times like someone has banged the back of my knees and wiped me out..but once i start walking it goes..would this be a side effect from the chemo? does anyone else seem to get this? scans all came back as no change and has left everyone baffled so if anyone can help i would be very grateful

    thank you

    tracy..xx

  • dearjilly
    dearjilly Member Posts: 73
    edited October 2012

    Hello all,

    I was reading this thread last night at 2am and I just wanted to let you know that you ladies are awesome!  You made me laugh and I love that we can sometimes just make light a diffucult situation. 

    I love to read when I can't sleep and your comments just help.

    I just diagnosed with a brain met on September 17th, so it's still kinda new.  I'm just getting through the initial shock and all the stuff that goes along with it.  I'm getting there, but sometimes it just takes time.  I lost my right peripheral vision, because of where the tumour was, so that is my biggest issue.  I'm going to the opthomologist today, so maybe he can help me with a new perscription.  I'm looking forward to that.

    Anyway, thanks for listening to my blabbering.

    Much love.  Jill  xo  

  • alesta29
    alesta29 Member Posts: 240
    edited October 2012

    Tracy

    I have some probs with my legs too which i dont believe is related to any mets - I blame the steroids which i understand can weaken your quads - along with all the other crappy stroid-effects.

    i find it  difficult to walk upstairs and if i kneel or crouch down, i need help to get up - like my nan too!

    hoping this maybe will ring some bells. have you recently been on stroids?

    lx 

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