Time is slipping away |
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Crystal 
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Joined: Mar 07 2009 Location: Alabama Status: Offline Points: 15 |
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 Topic: Time is slipping awayPosted: Jun 11 2009 at 1:49am |
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My mom is getting worse. Her liver mets is shutting her liver down. The cancer is not spread anywhere else, but has attacked her liver with a vengence these last couple of weeks. Three weeks ago scans showed the tumors were still shrinking. We had to stop chemo for 2 weeks because she was so sick. In just those 2 weeks her health got worse and she had to go into the hospital. Her ab region had fluid, scans showed her cancer in the liver had gotten worse and the tumors were taking over. We are trying a chemo that the onc says is our last hope. He says if this doesn't work it is time for hospice. I have been on the clinical trial website but I don't understand how it works. Is it too late? How do you get involved? Any info on clinical trials would be a great help. I just cant give up, but once the cancer is this advanced is there any hope? I don't know how to find new drugs to even ask the doctor. What he is giving her now is so toxic he said it would make her bleed internally and beat her up worse than ever before. Is it worth it? I want her here but I want her comfortable. Also is there any thing you guys know of she can do or take that will relieve the fluid and swelling? She is not in much pain right now but she is not able to get out of the bed other than to walk to restroom. We have to bath her and help her walk. Please keep my family in your prayers as we go through this time. It has only been 15 months since her initial diagnosis how could this take her so quickly. She was only stage 2b last March when her cancer was found. I am in shock at how little time she had. I thought it would at least be a few years even after mets.
Crystal Edited by Crystal - Jun 11 2009 at 1:54am |
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Crystal, Mom has TNBC
DX 3/08, Mast and 3+nodes 4tax 5/08 12A/C 7/08 finished 10/08 Mets liver 12/08 Avastin/Gemzar/Carboplatin 1/09 Ixempra/Avastin 3/09 Lost the Fight 6/09 |
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Roxanne
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Joined: May 11 2009 Location: Florida Status: Offline Points: 67 |
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Posted: Jun 11 2009 at 2:07am |
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Dear Crystal,
I am so sorry you and your mom are having to go through this. I am not an expert in your questions so I will leave that to those who are. But I am an expert in prayer and I will be doing that!! I will pray for answers for you and strength and peace for you and your mom to see you through!! Blessings, Roxanne  |
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DX 1/09 Metast. Adenocarcinoma
Stage IIIb Grade 3 TNBC BRCA 1/2 Neg. Lumpectomy & Ax. Node Dissect. 4 Tx A/C finished 5/09 12 Tx Taxol finished 8/09 35 rads finished 9/09 |
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Twila
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Joined: Apr 13 2009 Location: Canada Status: Offline Points: 7 |
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Posted: Jun 11 2009 at 5:57am |
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Dear Crystal,
I am also not an expert, but I will send all the positive thoughts and prayers that I possibly can to you and your family. Take care.
Twila
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Jun 11 2009 at 6:21am |
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Crystal, I'm so sorry your mother is having such a hard time. Cancer is an unpredictable beast, that's for sure. I don't have great suggestions, other than pointing you to someone who might be able to help. Go to the 'no surrender breast cancer foundation' website and post the question for Edge in the mets forum. He always has great ideas, and makes it his personal mission to help people like us. As for other chemos, there are quite a few your mom hasn't tried yet, like Xeloda & Nevelbaine. I don't know why your oncologist is giving up like that. As for clinical trials, are you near a teaching/research hospital? Where do you live? And where does your mom currently get treatment? These places (like UCSF or UCLA) coordinate trials, and have dedicated personnel to talk to all comers about where they might benefit. I'd suggest starting off by making some phone calls to the closest big-time hospital.
Much love, Denise Edited by dmwolf - Jun 11 2009 at 6:22am |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jun 11 2009 at 8:52am |
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Dear Crystal,
I too watched as my mom slipped away, but not from cancer, as she had both legs amputated, and physically could not hold on any longer. My heart goes out to you and your mom.
I found a link which Pam had posted as to trials, but I am not sure if this is what you are looking for. I will continue to search for others and will post if I find any.
Many hugs,
Nancy
one more
Edited by Nancy - Jun 11 2009 at 8:56am |
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jun 11 2009 at 3:30pm |
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Hi Crystal,
I too lost my mom many years ago and have never forgotten the frustration and pain of not being able to help her. Maybe you can still
help your mother.
When you go to http://www.clinicaltrials.gov type in the search box the subject you are looking for such as breast cancer metastasized to liver, you may have to play with the words a bit and that hopefully might pull up something.
Try the above websit also, seeking info and any trials.
Have you considered a second opinion? Is she able to go if you were to be able to get a consult with another Onc quickly?
I also believe Denise has a good idea. Any Research, teaching colleges are good sources for trials and/or possibly infornation you could use.
Did they help her with the fluid? Like lasix? Some chemotherapies can cause edema. Her primary doctor can prescribe lasix for eccess fluid.
I have done this myself.
We would not be able to answer your question as to whether it is too late. Again if possible I would try for a second opinion.
I have not personally been on a clnical trial, guessing here but imagine many are connected thru their doctor. If you were to find a trial and they were recruiting, the information will be there, contact, etc., call them, they will have your answers.
It is almost unbelievable I am sure to see this turn so soon on you and of course you have our prayers.
If we can help further let us know. Maybe more members will see your post and help. I do know there is more chemotherapy out there for her but do not know her personal situation.
Hit the search engines,
let us know how it goes and good luck!!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jun 11 2009 at 3:44pm |
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Crystal:
My heart and prayers go out to you at this time in your life. Losing our moms hurts more than our own deaths. There are very beautiful books put out by Hazelton foundation that help put things in prespective.
Keeping you close to me,
Karen
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Kcsacco
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Joined: Feb 08 2009 Location: Kansas City Status: Offline Points: 79 |
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Posted: Jun 11 2009 at 5:05pm |
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I too feel intense empathy for you, Crystal. I am an Oncology Nurse by training, so these are my thoughts.
Please do keep in mind that most medications, are filtered thru the
liver. Once the liver begins to fail, drugs are not filtered and can build up to toxic levels in the body very quickly. and this can hasten death.
Now I can't tell you whether your mom's liver is to that point or not.
but you should ask what your mother's kidney and liver function tests show, how many times the normal levels.
Ask questions until you understand what your doctor is telling you.
and write this down so that you can understand more of the requirements
for some of the studies.
Best wishes and prayers for God to hold you in his hands. Edited by Kcsacco - Jun 11 2009 at 5:17pm |
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Alisa
DX 3/07 7cm tumor L breast, Neoadjuvant Chemo L Mastectomy 8/07 Radiation and more chemo Finished 12/08 NED 3/08 Reconstruction 9/08 Recurrance 1/09 Multiple chemos 3/10 Parp with chemo |
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Crystal
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Joined: Mar 07 2009 Location: Alabama Status: Offline Points: 15 |
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Posted: Jun 11 2009 at 9:52pm |
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Thank you guys fo rthe thoughts and prayers it is greatly appreciated. WE have tried lasix and also the doctor told us he couldn't draw the fluid off because it would come back within a matter of hours. plus there are too many different pockets of fluid to be able to draw it. We go today for a treatment and dr visit. I will talk to him about clinical trials and these chemos that you guys have suggested. thank you so much for being there. I will also look into these websites you have posted. you guys always give me a new outlook and make me feel thankful that i have this website to come to.
please keep us in your prayers. Crystal |
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Crystal, Mom has TNBC
DX 3/08, Mast and 3+nodes 4tax 5/08 12A/C 7/08 finished 10/08 Mets liver 12/08 Avastin/Gemzar/Carboplatin 1/09 Ixempra/Avastin 3/09 Lost the Fight 6/09 |
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CAR-LH
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Joined: Jun 12 2009 Location: California Status: Offline Points: 21 |
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Posted: Jun 12 2009 at 9:16pm |
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Crystal,
Below is a link to an article that discussed targeted therapy to the liver. Please discuss this with the oncology dr, hopefully it will be an option for your Mom.
You are in my thoughts and prayers.
Cynthia
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jun 14 2009 at 12:26pm |
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Hello Car-LH and welcome.
I'd like to thank you for helping Crystal.
When you have a moment we would love to know about you.
Would you go to the Talk section of the forum and click on New Topic and share your story? Have you been diagnosed?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Crystal
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Joined: Mar 07 2009 Location: Alabama Status: Offline Points: 15 |
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Posted: Jun 14 2009 at 1:51pm |
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I wanted to thank everyone for all of their helpful advice, but it was just too late. My mom passed today at 3 pm central time. I want you all to know i will continue to keep you in my prayers and will check in from time to time.
Crystal
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Crystal, Mom has TNBC
DX 3/08, Mast and 3+nodes 4tax 5/08 12A/C 7/08 finished 10/08 Mets liver 12/08 Avastin/Gemzar/Carboplatin 1/09 Ixempra/Avastin 3/09 Lost the Fight 6/09 |
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jun 14 2009 at 2:32pm |
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Oh Crystal, I am so sorry. Please know that I care and am crying too.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jun 14 2009 at 2:39pm |
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Oh Crystal honey I am so very sorry.
You and your family have my prayers and condolences.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jun 14 2009 at 3:09pm |
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Dear Crystal,
Oh sweetie I am so sorry...my heart goes out to you and your family.
Many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Kcsacco
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Joined: Feb 08 2009 Location: Kansas City Status: Offline Points: 79 |
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Posted: Jun 14 2009 at 3:34pm |
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Crystal, I am so sorry for the pain and suffering you and your family are going thru. you'll be in my prayers.
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Alisa
DX 3/07 7cm tumor L breast, Neoadjuvant Chemo L Mastectomy 8/07 Radiation and more chemo Finished 12/08 NED 3/08 Reconstruction 9/08 Recurrance 1/09 Multiple chemos 3/10 Parp with chemo |
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Roxanne
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Joined: May 11 2009 Location: Florida Status: Offline Points: 67 |
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Posted: Jun 14 2009 at 4:08pm |
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I am soo sorry for the loss of your wonderful mom. What an awesome daughter you are. Praying for your strength for the difficult days ahead.
Blessings, Roxanne  |
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DX 1/09 Metast. Adenocarcinoma
Stage IIIb Grade 3 TNBC BRCA 1/2 Neg. Lumpectomy & Ax. Node Dissect. 4 Tx A/C finished 5/09 12 Tx Taxol finished 8/09 35 rads finished 9/09 |
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Jun 14 2009 at 8:04pm |
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Crystal, I'm so sorry. Your Mom was lucky to have such a wonderful daughter. I'm sure she was very proud of you, and that her best qualities will live on within you. I hope that soon she'll visit you in your dreams, restored to health. My friend Gena often dreams of her mother, as does another friend Mariam, visitations that they treasure.
Much love, Denise |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jun 14 2009 at 8:17pm |
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Dear Crystal,
I am so sorry... when I lost my best male friend on the planet two years ago a bereavement counselor recommended a book/CD called "Graceful Passages" that has really helped me and I know has helped others that I have given it to. I would be happy to send you one as a gift..just send me a PM with your name/address or go to wisdomoftheworld website.. I am very sorry for your loss..Please be kind to yourself in this difficult period. with sincere condolences, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Jun 15 2009 at 4:08am |
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Dear Crystal,
I am so sorry for your loss. Your mother must have been a loving woman to have a daughter as caring as you have been for her. Her memories will live on in your heart.
My deepest sympathy.
Love,
Connie
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