Topic: Brain MRI-making me CRAZY!
- Posted on: May 5, 2009 05:38 pm
Joined: Jan 2007
Posts: 2,246
I'm so screwy - I know something inside my skull is going to be improved or it's not. Prayers, petitions to the Lord, wishing on stars (really!), bargaining with my Higher Power, positive imagery - nothing. It's better in the brain or it's not.
My concern is increased by my last month of trial by decadron - a miserable failure. I started April 'clean', having carefully - oh so carefully and gradually - weaned myself off the steroids. I could say I was cautiously optimistic. Then I noticed speech problems returning, and getting worse by the week. I became nearly mute 10 days ago because of the frustration of just spitting the words out, I could form concepts, I still read with comprehension - but emails (and posts) were a chore to be avoided. I actually started seeing double - like trails. But I'm stubborn - it took my sister to say "Whatever the long-term consequences you fear being on that decadron, I don't have the feeling at this rate, that you'll live to see them."
Wake-up call! Despite my wanting to get an accurate picture on my MRI I started back on the drugs.Then I doubled the dose. Then I doubled the dose again. Finally after about 9 days I was semi-coherent (emphasis on the semi-).
What does this say about the tumor? I can imagine there being a cluster right on my speech center. Or I have 'seeded' them all about my brain. Why doesn't my brain stop swelling? I have waited three (more- tx was 12/08) full months to see some result of tx - why can't I just get a little better? I start the scan about 9pm - that's at night. My oncologist and neurosurgeon (in LA) promise they'll both call first thing in the morning. Suuure - by the time I get past the messaging system, past the nurses - maybe by noon? My imagination is running away with me!!!!
And the damned steroids DON'T help!
Lisa
Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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nash Joined: May 2007 Posts: 2,141 |
Oct 12, 2009 04:09 pm
nash wrote:
Yay, Lisa! So glad to hear you're home. Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa, Oncotype 18
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mthomp2020 Joined: Jul 2007 Posts: 878 |
Oct 12, 2009 04:49 pm
mthomp2020 wrote:
Good to hear you're home so quickly! Bet it's a huge relief to get this out of the way so you can concentrate on your scooter skills! Diagnosis: 5/21/2007, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2+ |
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flash Joined: Oct 2007 Posts: 655 |
Oct 12, 2009 05:42 pm
flash wrote:
You'll be popping wheelies down the road in no time. Great to hear that you're home. dcis, idc, pagets er+,pr+ her2+++
Diagnosis: 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+ |
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Adnerb Joined: Aug 2005 Posts: 684 |
Oct 12, 2009 07:37 pm
Adnerb wrote:
Lisa, hang in there. Let me know by PM or email if you need a ride somewhere, or if you need company. Brenda S. First Dx in July, 2005. IDC <1 CM, lumpectomy, A/C and 33 rads. 2nd Dx July, 2009, 2 tumors in same breast, different paths., BMx, T/C
Diagnosis: 7/28/2009, IDC, 3cm, Stage II, Grade 3, 0/8 nodes, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Oct 14, 2009 08:04 pm
LisaSDCA wrote:
Thanks, you guyz!!! My sister and I went on a shopping expedition to Costco and Target yesterday and I was able to keep up - and then some! My scooter worked like a dream. My bones didn't ache and I had stamina far in excess of what I thought I'd have - especially for being just three days out of the hospital for neurosurgery. I did get a pretty hefty headache about halfway through but I don't know if it was only due to my procedure or the fact that I was trying on eyeglass frames (finally got my Rx updated) which irritated my incision/staples. DUH! Anyway, some meds and a stop for raspberry/chocolate frozen yogurt did the trick. Yummy and no more pain! I'm lying low today as my sister went back to the Bay Area at 6am, and Esperanza only worked short hours for me, primarily occupied with refills for needed prescriptions. Looking forward to a possible trip to Trader Joe's tomorrow. REALLY looking forward to getting these sutures and staples out - maybe as soon as the 22nd. 'Dry' shampoo just doesn't cut it! xxxooo Lisa Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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lmays Joined: Apr 2009 Posts: 63 |
Oct 15, 2009 01:35 pm
lmays wrote:
Lisa! What a fantastic post!!! You warm my heart, girl. You really do. fighting for my rack
Diagnosis: 11/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2- |
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lexi4 Joined: Nov 2005 Posts: 2,230 |
Oct 15, 2009 11:38 pm
lexi4 wrote:
Lisa, I am so happy that you are getting out and about. The scooter sounds great! Keep on scooterin'! Hugs, Lexi Diagnosis: 8/22/2005, IBC, 3cm, Stage IIIb, Grade 3, 5/6 nodes, ER-/PR-, HER2+ |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Oct 24, 2009 03:00 am, edited Oct 24, 2009 03:02 AM
by LisaSDCA
LisaSDCA wrote:
edit: double post |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Oct 24, 2009 03:01 am, edited Oct 24, 2009 03:03 AM
by LisaSDCA
LisaSDCA wrote:
I have been encouraged to post a picture of at least the curled-up Pug in the scooter, so I'll try and do that tomorrow. I've got to re-load Picasa on my computer first! Jeanne46, who posts on this forum came over bearing lots of good books for me this afternoon. What a good buddy to have! She got the first up close and personal viewing of the TravelScoot. I think she was impressed - she surely was when I tore off through the living room, dining room and kitchen at about 60 mph! Well, slight exaggeration there... xxxooo Lisa Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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jeanne46 Joined: Nov 2006 Posts: 1,038 |
Oct 24, 2009 03:05 pm, edited Oct 24, 2009 03:06 PM
by jeanne46
jeanne46 wrote:
Yes, I'm here to testify what a really cool scooter Lisa has. She can CERTAINLY zip around. Lisa encouraged me to try it, but I was afraid I'd either mow her down going forward, or back up through the front window!! Her pugs are adorable and I can't wait for her to post one of them snoozing in the "catch-all" bag below the seat. For anyone with limited mobility (but who can support themselves enough to take a few steps) this machine is incredible. Truth be told, Lisa was only going about 30 mph! Handle every stressful situation like a dog - if you can't eat it or play with it, pee on it and walk away. Dx 12/2005 Stage IV, Grade 3, mets ER+ PR- Her/2 (2+)
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denisela Joined: May 2009 Posts: 82 |
Oct 25, 2009 06:25 pm
denisela wrote:
Thats great news you are getting out Im glad for you. Keep it up grl and dont make us have to install speedbumps now ha ha. Denise IDC grade 3 Stage IV mets, lungs ,lymph,bones,brain
Diagnosis: 2/14/2006, IDC, Stage IV, Grade 3, 2/2 nodes, mets, ER-/PR-, HER2+ |
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saint Joined: Mar 2005 Posts: 1,839 |
Oct 25, 2009 06:36 pm
saint wrote:
I get such a huge smile when I read about that scooter!!!! What is it's name>>>>>???????? LOL HUgs---be well & stay strong Life is not about waiting for the storms to end, but learning to dance in the rain! Orig dx Nov '00 stg1 gr3 0/27 pos nodes er/pr+ her2- mets dx apr '04 eyes & bones new dx jan '07 lung
Diagnosis: ILC, 1cm, Stage IV, Grade 3, 0/27 nodes, mets, ER+/PR+, HER2- |
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lizws Joined: Jul 2005 Posts: 2,636 |
Oct 25, 2009 06:42 pm
lizws wrote:
I love reading about your new freedom Lisa. It makes me smile. Hugs, Liz "Each day's a gift and not a given right".......Nickelback
Diagnosis: 7/18/2005, ILC, 2cm, Stage IIa, Grade 2, 1/4 nodes, ER+/PR+, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Nov 5, 2009 03:49 pm
LisaSDCA wrote:
It's happening again.
Just read through my initial post (all those months ago in May) and the same feelings apply. I have had several brain MRIs since May, but this is so important as it will show the results of all the treatments, surgeries and even if the Tykerb and Xeoda are working. I'm a wreck. Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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Adnerb Joined: Aug 2005 Posts: 684 |
Nov 5, 2009 05:00 pm
Adnerb wrote:
I'm sending you my love, and I am praying for good results. Brenda S. First Dx in July, 2005. IDC <1 CM, lumpectomy, A/C and 33 rads. 2nd Dx July, 2009, 2 tumors in same breast, different paths., BMx, T/C
Diagnosis: 7/28/2009, IDC, 3cm, Stage II, Grade 3, 0/8 nodes, HER2- |
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SoCalLisa Joined: Jan 2006 Posts: 3,146 |
Nov 5, 2009 05:04 pm
SoCalLisa wrote:
awww Lisa...sending my hugs... DX 2000-IDC- 2B..POS NODE--ER+. PR+, HER2 NEG
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EGAL Joined: Apr 2007 Posts: 468 |
Nov 5, 2009 08:39 pm
EGAL wrote:
Lisa, Fingers crossed for good results!!! Ellen EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets
Diagnosis: 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+ |
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luvtotravel… Joined: Sep 2008 Posts: 932 |
Nov 5, 2009 08:45 pm
luvtotravel wrote:
thoughts and goood news are in your future Luvtotravel Stage I 2004 Stage IV 2008 mets to bone and liver.
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Nov 5, 2009 09:33 pm
LisaSDCA wrote:
Lydia! How are you doing, woman? I have been so worried about you! In fact I prayed for you when I was in 'the tube' (I have had enough MRIs that claustrophobia long ago ceased to be a problem) and asked for His help and strength to be given you. I hope it has come to pass. All the women here were asked to be given strength in all your challenges. I also enjoyed a good visualization of Bora-Bora! In general I can say I survived the MRI very well, the PICC line helped me not to get dug into (4 pokes last time). I have a PET/CT scan tomorrow at noon so the tension will likely last through the weekend. I emailed my onc. to give him a heads-up to be watching for at least a preliminary MRI report tomorrow. I know it's too much to ask for the PET to get read. I got a quick glance at some of the films (co-operative tech) and it seemsthe right temporal lobe tumor is essentially gone and the original (big) tumor is fizzling out and measures a fraction of what it once did. I asked about a distinctly radio-opaque spot toward the posterior region but he would not answer any questions yay or nay. For all I know at could be normal anatomy. Half-a-dozen people stopped me on the way to my appt. to ask about my TravelScoot! Thanks for all the good wishes y'all, Lisa Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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jeanne46 Joined: Nov 2006 Posts: 1,038 |
Nov 5, 2009 09:48 pm
jeanne46 wrote:
Oh Lisa, I am so hoping all goes well tomorrow and that you get your results - GREAT results - ASAP. Will be keeping my fingers and toes crossed, as sweet Pinehouse used to say, and holding you in my thoughts and prayers. BTW - I have a friend with very limited mobility due to COPD - showed him the URL of the mobility scooter and he got very excited. Who knows: maybe we will have a whole parade of scooter users. Handle every stressful situation like a dog - if you can't eat it or play with it, pee on it and walk away. Dx 12/2005 Stage IV, Grade 3, mets ER+ PR- Her/2 (2+)
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LuAnnH Joined: Aug 2006 Posts: 8,741 |
Nov 5, 2009 11:49 pm
LuAnnH wrote:
Lisa, sounds like you are tearing up the town on your little scooter! I'm so glad you were able to get it! I know I don't post much but I do try to follow your saga but boy there are lots of pages LOL! I hope you get excellent results on the MRI, sounds like it's looking pretty good though from your laymans reading! LuAnn -- www.luannsblog.typepad.com
Diagnosis: 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+ |
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GrammyNancy… Joined: Feb 2007 Posts: 596 |
Nov 6, 2009 11:50 am
GrammyNancy wrote:
Lisa, praying for wonderful results for you. Nice that you were able to get a look at your MRI and get some positive info. It's amazing all the things we learn on the journey. Hugs Diagnosis: 2/5/2007, ILC, 2cm, Stage IIb, Grade 3, 1/7 nodes, ER+/PR+, HER2+ |
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RobinWendy Joined: Mar 2007 Posts: 1,283 |
Nov 7, 2009 10:46 am
RobinWendy wrote:
Lisa, Praying so hard for you to have great scan results. Your "preview" sounded pretty good. I know you will let us know as soon as you can... fingers crossed Robin dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 (What's up with me and January, anyway?)
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meima Joined: Apr 2008 Posts: 359 |
Nov 7, 2009 12:39 pm
meima wrote:
Lisa, Prayers for the best possible results. Meima Diagnosis: 8/31/2006, Stage IV, mets, ER+/PR+, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Nov 9, 2009 12:55 am
LisaSDCA wrote:
Like many of us, I have been shocked and saddened by Lydia's death. Also, I have been sobered by the thought of how one week's downhill slide could result in my demise, just as easily as hers did. I feel reasonably healthy, as good as one can feel when they're taking daily Tykerb and Xeloda. I feel like I'm healing from that hellacious Summer (and into the Fall) of multiple brain surgeries and too many hospitalizations. But no two ways about it, I've got mets, brain mets, and more than one, too. That brings me, in a 'round about way, to the purpose of this post. You see, I've got reason to celebrate. In the midst of my anguish, I realize that it is one year since my Stage IV diagnosis. This is quite a feat when the stats on brain mets gave me 12 weeks to 12 months average survival time. And the second tumor six months after the first, gave me an even more wretched outlook. I have, by the grace of God, reason to rejoice! It's only an arbitrary span of time, an anniversary - but by gum - I'm going to exult in this, revel in it just a bit. Who knows what my scans will say tomorrow? For today, I'm LIVING. And life is sweet. Lisa Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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coonie Joined: Jun 2008 Posts: 5,522 |
Nov 9, 2009 06:58 am
coonie wrote:
And we are giving thanks, Lisa, that you are still here. And WILL be here for a long time to come!!! Only God knows when He's going to call us home. ~ One day at a time ~
Diagnosis: 11/14/2007, IDC, 2cm, Stage IIa, Grade 2, 0/15 nodes, ER+/PR+, HER2+ |
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Nanalinda Joined: Jan 2009 Posts: 341 |
Nov 9, 2009 08:15 am
Nanalinda wrote:
Lisa: Reading about all you have been through gives me the courage I need to face this disease each day. Your strength is inspiring, and I just want you to know that I think you are a great warrior!! Linda Diagnosis: 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Nov 10, 2009 06:01 pm
LisaSDCA wrote:
Notice: ALL stages are welcome to reply to my posts Y'all may know I had both a brain MRI and PET/CT scan last week. I haven't gone into excruciating detail about my waiting through the weekend and beyond, as I may have seemed inclined to do.:) Eventually, I got the preliminary results... My brain shows NO NEW TUMORS and improvement in the 2nd, right temporal lobe (where I had the Stereotactic Rads) and the original tumor (the left, honkin' one) shows successful surgical intervention and also seeming residual benefit from the SRS. HALLELUJAH! Report says STABLE DISEASE! Now the PET/CT shows primarily tumor activity and won't show much related to my bone necrosis in my legs, etc. But it shows NO sign of tumors of any sort! The tenth rib on my right which was "highly suspicious for metastasis" is gone, the hilar node (also highly susp.) and another node also are no longer evident. And so on - zip, nada, zero! The chemo is WORKING!!! I am so thrilled! It's about time I had something positive to report. I don't 'deserve' it. I have done nothing that Lydia (luvtotravel), Pinehouse, SunshineSmiles, VickiG, Heidi or any number of women who have died recently or are struggling against progression haven't done. I feel blessed and very lucky. Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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barbe1958 Joined: Nov 2008 Posts: 5,194 |
Nov 10, 2009 06:06 pm
barbe1958 wrote:
Oh Lisa! That is the best post you've made in a long time! You done good!  Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Diagnosis: 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2- |
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jeanne46 Joined: Nov 2006 Posts: 1,038 |
Nov 10, 2009 06:10 pm, edited Nov 10, 2009 06:16 PM
by jeanne46
jeanne46 wrote:
Halleluyah!! That is FANTASTIC news. Really FANTASTIC news. No one deserves cancer. We all deserve good news and frankly, to be cured of this monstrous disease. Please no guilt. Just a happy dance. I'm sure Lydia, Lani, SunshineSmiles, VickiG., Heidi and all our dear sisters who we have lost are also doing the happy dance for you. Handle every stressful situation like a dog - if you can't eat it or play with it, pee on it and walk away. Dx 12/2005 Stage IV, Grade 3, mets ER+ PR- Her/2 (2+)
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