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    Posted: Mar 03 2010 at 9:56am

To the dearest support group anyone could ever hope to have....it was a malignant pleural effusion.

The doctor just called and I am devastated. 
 
I just wanted the wonderful people who called, wrote, researched, prayed, sent cards to know that no matter how awful this disease may be...the love and kindness from friends I have never met makes it easier for me to bear.
 
With love and thanks,
 
Connie
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:27am
Connie,
  I am so sorry to hear the news.  I was praying that it wasn't.  You will continue to be in all our thoughts and prayers. 
 
Amy
36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:27am
I am speechless. Thank you for telling us.

With love,
Mary
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:42am
My dear Connie,
My love and prayers go out to you dear sister...
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mom&grandma Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:52am

Connie,

This is indeed devastating news for you and for all of us that have had the pleasure of receiving your support.  Please continue to post so that we may be able to support you now.
 
Bonnie
Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:56am
Connie, I sent you a PM.   Ok, NOW we go to work, NOW we team up to get cracking on finding the very best NEXT STEP for you. You ARE NOT alone, you are SURROUNDED by an army of defiant women.
So have you been able to get appt to see onc?
Ladies, time to gather our wits about us, we are all for one and one for all here!
Now I'm going to go outside for a bit and scream. Back in a minute.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 10:58am
Connie,

I am so sorry.  My heart just sank when I heard the news.  Please let us know whatever we can do to help you.  You are in my thoughts and prayers.

When you feel up to it, can you tell us what treatment they are recommending?

You have given so much to all of us.  We are here for you and will stand by your side every step of the way.

Love and hugs,

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 11:03am
I am so mad I keep editing this damn thing over and over.

Waiting to do research.


Edited by MaryinSarasota - Mar 03 2010 at 11:49am
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 11:13am
Sweetie,  I have a tear rolling down my cheek.   IT SUCKS.  HOW INCREDIBLY F*CKED. 
I'm with mainy - time to MOBILIZE and get you through this. 
Love,
Denise (one of your army)
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 1:07pm
To update you since this morning....
 
I am trying to get through to the oncologist to get an appointment (not as easy as one might think).  I asked my GP to call and I gave him my best advice....NEVER let them transfer you because you will speak with 4 others repeating exactly the same thing, and in the end you will just hit your head with the phone receiver.
 
Love,
Connie
 
P.S. Paco is beside himself
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 1:15pm
Connie, I am so sorry for this news... now team.. lets get praying... and lets start researching... Connie, how can we help... ?  Autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 1:18pm
Hello Connie,

I am so sorry you had to hear such devestating news today, or anyday for that matter. I will be praying for speedy medical support for you. No more of this going to the end of the line or being put on the back burner. Please let us know what we can do to help.

I pray they come up with an effective treatment plan "yesterday".....

Please keep us informed, WE LOVE YOU...

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 1:19pm
Connie,
 
I am so sorry to hear your devastating news. My thoughts will be with you.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 2:48pm
Connie,

Let us be your foot soldiers in this battle.  I know you're in Canada and constrained by their rules for treatment.  Is there anyway at all that your case could be reviewed in the states?  For example, if we could get a contact (an onc that specialized in tnbc) at some place like MD Anderson, is there anyway to get your medical records sent there and ask for an opinion for treatment?  Can you get treatment in the states if all else fails?
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 3:32pm
Dear All
   Until Connie gets her appt with her onc and gets something more definitive for us to start researching what we are left with it seems to be, so that we can be helpful
 
1.   What support groups can we find or advocacy groups up in the Ontario, Canada area. Onces that can cut loose an advocate to drive her if necessary, or whatever she needs
2.   She's hoping to get chemo treatment, and eyeing the PARP trials, so what PARP trials are out there, anyone here involved in them and if so how are they faring
3.   She has managed to get in with one of the very best onc's in her area, the problem is immediate access. So if anyone has a "Rocko" in their family that could travel with to add a little intimidation to the govt medical system that would surely be a good thing. Their doctors are no better or worse than ones in the US, the system and managing it are what are the real problem.

So for the immediate moment, let's look to ourselves, what is available in the PARP trials, how well are our members managing, anyone with personal experience with the pleural effusion, heart issues and of course any recipes for dog treats...all are welcome
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 4:36pm
Dear Connie,

I sent you a PM.

What Mainy said....amen to all that.

I will see what I can do too.

Hugs and strength,
Bliss
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 5:23pm
I am 4 weeks post radiation.....I just wanted to say when I first started the Journey (Connie) helped me SOOOO much.....SORRY but gotta say it......I HATE THE FREAKIN STUPID PATHETIC DISEASE!!!!!

WHERE IS THE D**MN CURE???????!!!!!!!!!!!!!!!!!!!!!!!!!!

Lord please forgive me.....Just put your hands on our sister and let her know she is NOT alone...

dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 5:49pm

I want you to know how much I appreciate all the kindness and support.  I have an appointment for next Tuesday with my oncologist.  The very kind respirologist asked me to come to his office tomorrow and hopefully we will have a better idea of what we are dealing with.

I need to fact find to see what is being done for malignant pleural effusion.  If anyone is going through this please share what treatment protocol is being used in your area.
 
Has anyone every heard of cisplatin solution being infiltrated directly in the lung?  I read it somewhere and cannot find it now. 
 
From the bottom of my heart, I thank you for your kindness.
 
Love,
Connie
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 6:42pm
Hi, sweetie.  Cisplatin directly into the lung sounds awful, though that is just what they do in the peritoneal cavities of women with ovarian cancer and it works well.    My guess is that the first thing to do is to take care of the effusion.  I think this means something like doing a talc pleurodesis, which does something like scar the pleural membranes so they 'stick' together, which prevents build-up of fluid.  The other possibility is a stent, though this means fluid with cancer cells will be flowing into peritoneal cavity, which sounds like a bad idea.    Your respirologist can explain all the options to you tomorrow.  As for feedback, you should probably also post the question in the mets/recurrence subforum here, and at Inspire http://www.inspire.com/groups/advanced-breast-cancer/discussions/.  Speaking of which, if you haven't already, you might want to join Inspire.  A wonderful group of women can be found there, living with stage IV.    You can count on lots of feedback to any question, and support.  (We can't have too much of that, right?  And just about now it might be good to have at your fingertips a group of cool women who have had to hear the same words and make the same decisions.)

Love,
Denise
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2010 at 6:46pm
Here's some info:  (it looks like the best sclerosing agent is talc, not bleomycin or cisplatin)

Two general approaches to the  management of symptomatic pleural effusions are chest tube drainage with installation of a sclerosing agent and thoracoscopic drainage of the pleural effusion under local or general anesthesia with intraoperative sclerosis of the pleural space.

Historically, many chemical agents have been instilled into the pleural space and shown to have some effectiveness in controlling effusions, including tetracycline, doxycycline, minocycline, bleomycin, cisplatin, doxorubicin, etoposide, fluorouracil, mitomycin, mitoxantrone, interferon, Corynebacterium parvum, mepacrine, methylprednisolone, and talc.[6]

Chest tube drainage should be done by inserting the chest tube into the pleural cavity and draining the fluid. When the drainage reaches less than 50-100 milliliters in a 24 hour period, a sclerosing agent can be instilled.[2,5] Information on the recommended sclerosing agent is currently inconclusive. The few randomized studies on this topic are plagued by small numbers (all but one have fewer than 50 patients per arm), and relatively short follow-up. The single randomized study with more than 100 patients showed nearly twice as many patients had their pleural effusion controlled with bleomycin at 90 days (70%) than those treated with tetracycline.[7]

Large single-arm comparative studies [8-10] and very small randomized studies suggest advantages for talc as the sclerosing agent compared to tetracycline and bleomycin.[11,12] In these two randomized studies, thoracoscopy and insufflation of talc controlled the pleural effusions in twice as many patients as tetracycline or bleomycin (>90% versus 50%, respectively) in 63 patients with breast cancer. The comparative and single-arm studies suggest that talc provides control of approximately 90% of pleural effusions for 90 days or longer.[8-10] We await the results of two different large cooperative group randomized studies to help determine the appropriate sclerosing agent to use to treat patients with malignant pleural effusions. One compares intrapleural bleomycin, doxycycline, and talc as sclerosing agents.[13] Another compares the use of a talc slurry administered via chest tube to talc insufflated during thoracoscopy.[14] Another approach is appropriate for patients with a symptomatic malignant pleural effusion and good performance status (ECOG performance status of 0-2) who are capable of undergoing a procedure under local, regional, or general anesthesia. These patients can have thoracoscopy with biopsy of suspicious pleural lesions, lysis of adhesions, evaluation to see if the lung re-expands, and installation of the sclerosing agent during the same procedure.[4] This potentially shortens the hospitalization because the whole procedure can be done in the operating room in a single day.


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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