 |
|
06-21-2006, 12:41 AM
|
#22
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
That sure makes me angry that they would blow off her complaints for two weeks. She KNOWS her body better then they do and they are suppose to be medical professionals and know WHEN to LISTEN!
I get angry because when I first started chemo I called my oncologist for 4 days in a row telling him I could NOT breath!!! He dismissed me too just like they did Linda's daughter. I landed in the hospital and could of died..it WAS very serious! Some of these doctors just think they know it all without even looking at you.
My heart goes out to Linda's daughter and you. I sure will be saying a prayer for her and family. At least now she IS getting some help. I pray she is on the mend soon. Take care of her and yourself.
Sending warm healing thoughts your way.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
|
|
|
|
06-21-2006, 03:51 AM
|
#23
|
|
Senior Member
Join Date: Sep 2005
Location: Raleigh, NC
Posts: 148
|
((Holding you and your step daughter close))
|
|
|
|
|
06-21-2006, 04:53 AM
|
#24
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Al
Hoping your daughter heals fast...just as you are, she is going through alot right now....take time to grieve, it helps the healing...your step daughter has the best caregiver in the world looking after her.....give her my love.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
|
|
|
|
|
06-21-2006, 06:57 AM
|
#25
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
I am thinking of you
Dear Al,
I am thinkiing of you and your family - will continue to keep you in my daily prayers - stay strong (as you always are) !
Warmly,
Jean
|
|
|
|
|
06-21-2006, 08:35 AM
|
#26
|
|
Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
|
Al,
I'm so sad that you and your family have been through soooo much. Just wanted to say that I'm thinking of you and sending prayers and healing energy your way.
Love, Kim
|
|
|
|
|
06-21-2006, 09:22 AM
|
#27
|
|
Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
|
Dear Al, My heart aches for you and your daughter! We all will be thinking of you and her and praying for some quick answers and healing. You and your family are very special to us. Please keep us informed as you can, and know a lot of sincere prayers are being sent your way. Hugs, Tricia
|
|
|
|
|
06-21-2006, 10:24 AM
|
#28
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Al,
you know we're all hoping for a speedy recovery - 22 is so young but she comes from strong stock.
all the best through this new worry.
Sarah
|
|
|
|
|
06-21-2006, 11:32 AM
|
#29
|
|
Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
|
update
Thank you all for your support. Today they actually gave her washroom privleges (no bed pans), which means a huge improvement and although she is not out of the woods yet, she may be sent home sooner rather than later. We found out she has a number of clots which obstruct the function of the upper right lung. She vitals have improved tremendously which means the clots are disolving. The trick seems to be to get her clotting factor down and stable.... then she will be on oral thinners for 6 mos to a year with monitoring.
It seems the reason this was misdiagnosed was because she was missing all the other warning signs like deep vein thrombosis in her extremedies etc. and she had no real risk factors. Because of her age and lack of other symptoms, they were stunned to find numerous clots magically appear in her lungs. I will post when she comes home.
Again, you guys are magic..... Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
|
|
|
|
|
06-21-2006, 01:12 PM
|
#30
|
|
Senior Member
Join Date: Oct 2005
Posts: 476
|
Al,
It seems unfair that you and your family have to go through so much. We are rooting for you. Cheer up, tomorrow will be a better day. Our prayer goes with this message.
Ann
|
|
|
|
|
06-21-2006, 04:34 PM
|
#31
|
|
Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
|
Al, Steph said it best:
"How much can one family take??
Spend all the time you need with your daughter and ride those docs as we know YOU can."
Be strong and know that many prayers are swirling up on your behalf.
Chris
|
|
|
|
|
06-22-2006, 09:22 AM
|
#32
|
|
Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
|
Dear Al,
I'm certain she will do ok. She is young and will do fine.
I know. It seems that those of us who are "hit" are hit again and again! Unfair I know but that is life.
Hang in there. Thank you for keeping us informed. I know that you can count on us for support and prayers
XO
MCS (maria)
|
|
|
|
|
06-22-2006, 01:34 PM
|
#33
|
|
Senior Member
Join Date: Apr 2006
Posts: 46
|
Truth is Stranger Than Fiction
Dear Al,
I've been following your posts following the loss of your beloved wife Linda. You are such an admirable man to have taken such good care of your wife right up to the end while at the same time reaching out to others to lend a helping hand. And now this. It seems unbelievable that you would be dealt such a one-two punch. From experience I know that the older I get the wiser I get and I am better able to deal with life's trials and tribulations. From reading your posts I can see you are a first-rate fighter and will get through this too. Sometimes I get a "feeling" of a flash of insight and for some reason when I read your post I immediately felt/believed that your daughter will be just fine. Anyway, I sure hope she gets well and soon.
Take good care of yourself, too, so that you do not get too worn out from taking care of everybody else in the family. Easy to say, hard to do, I'm sure.
Lately the little blessing the Father says at the end of church has been running through my mind:
May God bless you and keep you
May He cause His face to shine upon you
and give you peace
Mary
|
|
|
|
|
06-22-2006, 02:10 PM
|
#34
|
|
Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
|
Dear Al, I'm so relieved to hear you're daughter's showing improvement. Maybe the worst is over, and I hope and pray she continues to improve and can GO HOME SOON 
What a strange complication for you all to have to deal with, but once she home it will be easier to handle the follow-up treatment. Take care of you.
<3 Lolly |
|
|
|
|
06-22-2006, 03:42 PM
|
#35
|
|
Senior Member
Join Date: May 2006
Location: Cleveland, Ohio
Posts: 65
|
Al:
I know what it's like to get hit like this. I will keep your step daughter in my thoughts and prayers. She is lucky to have you to guide her through this most difficult time.
All the best,
Jayne
__________________
Caregiver to mother, Diane
Diagnosed 3/2006 Stage IIB (T2, N2, M0), Her-2+++, Er/PR-, Grade 3
|
|
|
|
|
06-23-2006, 07:10 PM
|
#36
|
|
Senior Member
Join Date: Sep 2005
Location: Coatbridge, Scotland
Posts: 73
|
It's a very testing time for you all
Your in my prayers
God Bless Geraldine
|
|
|
|
|
06-24-2006, 02:09 AM
|
#37
|
|
Senior Member
Join Date: Oct 2005
Posts: 36
|
Al
I am so sorry to hear about your recent problems - my heart goes out to you.
It might not be relevant but I thought I would mention it anyway. There is a history of clotting in my family at a young age and because tamoxifen increases the risk I inisted on having further blood tests - I am in the UK, the tests are expensive and I had to stamp my feet. Apparently 5-10% of the population have Factor V Leiden blood which is more likely to cause clotting problems - I have this. I have to take aspirin every day and have Heparin injections if I have surgery or a medical procedure which involves being immobile for a while. My niece has the same problem and ended up having a stroke at 19 - her risk was increased by being on the pill. Not sure if this is of any help .....
Thinking of you and your family
Love
bjj
|
|
|
|
|
06-25-2006, 03:29 PM
|
#38
|
|
Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
|
Bjj,
what is Factor V Leiden blood?
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
|
|
|
|
|
06-25-2006, 04:49 PM
|
#39
|
|
Senior Member
Join Date: Oct 2005
Posts: 36
|
Hi Al
Factor V Leiden blood is blood that is more likely to clot - it wasn't know about a few years ago. The following link might help you.
http://www.fvleiden.org/
It might be worth seeing if you can get tests done for Linda's daughter. It's very unusual otherwise for a 22 year old to have such problems.
Please don't hesitate to ask if I can help with any more information.
Love
bjj |
|
|
|
|
06-25-2006, 05:38 PM
|
#40
|
|
Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
|
Thanks Bjj,
That's excellent stuff...esp the Cardinal Glennon guide.
It's always an education....
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 10:03 PM.
|
Linear Mode
