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Greetings everyone! I have a question...

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:22pm
RyB1984,

Thanks for sharing!  I'm so glad things are looking up for you and your mom.  Yes, a year can make a big difference.  Getting the port out is a big step.  Hope your mom gets to enjoy tennis again.  Stay in touch.

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 AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2017 at 12:29am
So happy for you and your mom! Take care of yourselves Hug
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2017 at 8:50am
RyB1984: Congratulations!!! So incredibly happy for you both. See how good God is, all the time? Life each day for the gift that it is and thank you for letting us know how you're doing, always good to learn the success that people are experiencing fighting TNBC. 

Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2017 at 7:08pm
Hello Everyone!
I hope everyone is doing well here.

I just wanted to update you all on things.
My mom completed treatment during the 3rd week of March and she was doing so very well. No evidence of cancer.

Close to 2 weeks ago (it will be 2 weeks this coming Thursday/Friday), my mother was complaining of some shortness of breath. Last Monday, under the guidance of her primary, I brought her to the Hospital here.
They did a chest x-ray and a cat scan and the only thing they could find was fluid outside of the right lung. No new tumors or anything. Oxygen levels were always between 96%-100%.
After extracting the fluid and doing a test on every single thing......the fluid has cancerous cells (we just found out today). We ALL are so shocked. I don't even have words for this.

It's called Pleural Effusion. I've googled this (and its the worst thing I've done) and I'm not sure what to say or think. The oncologist bets money that it's her original breast cancer that moved and somehow survived. They say it can be treated and we are just awaiting the pathology report in regards to staging, no nodes on the lungs, she will have scans next week of the entire body to see if it has spread anywhere and the echocardiogram on Thursday. Port will be placed back in and she will be put on chemo again. She is being referred to the Dana Farber center in Boston.

Has anyone ever heard or dealt with this? I. am. scared. more than anything for her. Although she's shocked and trying to wrap her head around this, Her spirits are most certainly still up and she is determined to fight. The oncologist did say it can be treated.
Any useful information would be great guys. I'm even coming to you all for cyberhugs.
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snugltz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2017 at 10:03pm
I know nothing of this.  never heard of it.  I wish I could do something for you but I will give you are great big cyberhug.  Your mom too.  Im so sorry.  But if doc says its treatable hold on to that. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2017 at 10:08pm
I'm so sorry - sending you a big cyber hug.  

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 SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2017 at 12:40pm
RyB, after reading about your Mom's story, I want to cry. Everything looked so promising - but it sounds like there is still hope. Please hold on to that. Sending you and your Mom a big hug from Virginia! Please keep in touch.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2017 at 8:12pm
I'm so sorry to hear of this setback. Oncologists are working to find agents to treat lung cancer mets originating from breast cancer, I wish I had a suggestion, please know we are thinking of your Mom and all your family.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 7:08pm
Hello Everyone!

I hope everyone is doing well.
It's been an interesting time since I last posted. Many many emotions running through this family right now.

I wanted to give you all an update.
So Mom had a full body scan to see if the cancer has spread anywhere and to our amazement......the cancer is only fluid around the right lung and no cancer in any other part of the body. (THANK...GOD!!!!)
Her Cancer Antigen 27.29 was 30, which I guess the normal rate is between 0-38 or 0-42. Oncologist said this is very normal.
Her port was placed back in and she has started chemo.
The oncologist recommended we go to the Dana Farber Cancer Institute in Boston and we met with Dr. Wendy Chen....what. a. sweetheart. She's highly recommended and one of the top in the US.
So this was indeed an EARLY reoccurrence of the original breast cancer (it moved).....Dr. Chen said that she is not eligible at this time for any clinical trials as it's TOO EARLY as there is no measurable size of disease in the body.
The timeframe between the diagnosis and treatment was quite painful. I cried almost everyday and I even cried after I asked for a hug on Mother's day (the night before treatment, who does that SMH) as I told her, "I have been forced to think about continuing my life without her. I told her I cant lose her or I'm going to be a wreck."
She said she will fight and will beat this for me, my brother, my sister-in-law and her grandchildren. Wiped away the snots and tears (lol) and Strength came roaring back and I've been better since.

The recommendation right now is that she will start Carboplatin (she had one infusion already). Both Dr. Chen and our current oncologist are working together and we feel good that we have both the RI Cancer Center and Dana Farber aligned with us. Dr. Chen said there is every reason in the world to believe there is strong hope for my mom. She said she is not dying (she was very blunt, honest and told it like it is)

I think what we are most grateful for is that it's no where else in the body. She's had too taps of the thorentesis (every 2 weeks). This past Monday marked 2 weeks since she had the extracting of fluid and she is starting to believe she may not need another one. Shes starting to sleep a little better, Her shortness of breath has improved, and she goes walking. She recovers a lot faster since she has started treatment. Tomorrow, they are doing a Chest xray to see how the fluid is doing and if another thorentesis needs to be done (she would prefer not to, but if it has to be done, it has to be done, not a good or bad thing as long as it dries.) Oncologist believes the chemo is working.

I am not questioning the oncologist because she TRULY CARES and wants to help my mother. She has told to my mom's face, "I Love you"....she's excellent and truthful, however, I am willing to do ANYTHING in this world to keep my mother on this earth. If there are any other recommendations anyone has, please feel free to let me know. I am asking for you all for prayers and send positive vibes. We are ahead of the game at this time, but I want my mother CURED just like I want every person who is suffering from this horrible horrible disease to be CURED! And according to an article I read recently, they are SO CLOSE to curing SPECIFICALLY TRIPLE NEGATIVE BREAST CANCER!



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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:19pm
RyB1984: thanks for the update! Emotions run high here too

That is really good news that it's only a lung problem !

We hope the Carboplatin continues to help! Please don't dwell on the time-frame from dx to therapy, this is , from what we have been through, always longer than what we expected....I agree, the loss of one in the family closest is impossible to comprehend, ...

the oncologist is basically, the key to life, is the way I see it. They aren't God, but they are trying to their best on behalf of God.

We are thinking of your Mom, you, and your family tonight.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:43pm
Thank you Gordon!

its starting to feel comforting that at least shes being treated now. I am trying my best to move on from that time frame but my mother...man....shes focused on beating this.
We are thankful it's not IN the lung, its on the outside of the right lung and its only fluid. I am praying this Carboplatin works...never heard of it though.

and I agree with you, the oncologist is trying on the behalf of god.
Thank you SOOOOO much! it sincerely means a lot.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:50pm
We are thinking of your Mom and you, it may take a week to see results, keep us posted, ok?
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:51pm
absolutely. I will keep you all in the loop. Thank you, thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 8:59pm
My wife's oncologist is Dr. James Sinclair, he has a partner who specializes in ALL cancer, whereas Sinclair is just breast cancer. He has talked about mets to lung. He's on top of all the latest. He recommended my wife to UCSD/Moores, where she is seeing a doctor , if there is anything I can ask them, just tell me. Sinclair said, just as an example, Keytruda was very effective for melanoma, but he was disappointed in the trials for breast cancer to the lungs. I try to keep up on "eventualities" that might happen, I'm glad to hear you have some good doctors doing the best they can.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 9:27pm
could you please ask.....i'm trying not to question what the oncologist is doing cuz she knows what shes doing and consults on the tumor board every week but... I have seen a lot of Combo treatments with Carboplatin. Is Carboplatin an effective chemo or should we consider something with it as a combo? Taxol is not an option as it did something to her lungs last year and it was easily recoverable. what kind of other options could we look at?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 9:51pm
Dana Farber is one of the best. It's my opinion, it's best for you to believe in your Mom's doctors right now, and give their recommendations a chance.

 We can compare notes later, if needed, my wife had a PET/CT about 2 weeks ago, she has a few spots they are watching, she has some lung lesions but they are benign (they are called "ground glass nodules") Since she hasn't had lung issues, other than shortness of breath from radiation to top-outer lobe, when they had to do radiation in her clavicle area, because there are lymph nodes there, that has subsided.

Next time I go in I will ask about any new lung therapies, in the meantime, let us know how your Mom is responding.





wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 10:39pm
Hi RyB, Thanks so much for letting us know about your Mom.  This news does give a lot of hope that the chemo can eradicate those cells.  You are such a sweet and vigilant son, and I know your Mom must be so thankful for you!  I'm sorry she has to go through so much, but I am thankful to hear that the oncologist sounds optimistic.  I will keep your Mom and you and your family in prayer.  Sending my love and best wishes!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2017 at 8:06pm
Good Evening everyone!

So I wanted to keep you all updated on things that are going on.
Mom has completed 2 treatments and a new update is that she has had a catheter placed in to help with drainage (this Monday will be 2 weeks since it has been placed in).
Momma dukes is in pain often due to the catheter and the fact that the lung feels sore. Nausea is a problem for sure. There has been some slight weight loss but nothing CRAZY. It's like a roller coaster but she does eat!
We have a visiting nurse that comes every other day. The typical amount that would be extracted was 1000ccs (I believe that would equal 1 liter)
Just last week (last Thursday to be exact), 900ccs was drained,
Last Saturday was almost 800ccs
This past Monday was 400ccs.
This past Wednesday was 400ccs again.
So they lowered the amount that would be extracted instead of 1000ccs, it would be 500ccs. The visiting nurse even went as far as saying ill come every 3 days.
Today, the visiting nurse extracted....drum roll......150ccs!!!
Even the nurse was saying something is clearly working.

Something is working everyone. This Carboplatin seems to be working.
She has done some walking at the track and at times even runs during her walking just to keep the blood flowing etc and get that oxygen in. Oxygen levels never go below 97%.

I'm not sure what or why this Carboplatin(platinum chemotherapy) is different than the standard chemotherapies but this sure is working.
I feel like some time soon, this catheter may really be coming out (Prayers up!)
There was talk of possible chemo for long term which was disturbing to hear but I do know God has the final rule on that one. I am hoping at some point we will hear NED again and she will have no meds and can live freely again....I'M HOPING!!!!!
Prayers prayers!!!!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2017 at 8:12pm
Also to add, her blood work is ALL going back to normal, which was crazy to see. All her blood levels, liver, magnesium, WBC, RBC, platelets, glucose EVERYTHING....is all going back to normal. there were a few blood tests in the past when we first got the DX back in may of the reoccurrence, a few levels were low and the a few things were high.
once again, everything is all going back to the normal range again which makes me scratch my head. Not saying I am not thankful and thanking god that the doctors are keeping a close eye on her and making sure she's good, but I'm hoping this is another signal that we are going in the right direction.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2017 at 12:38am

RyB

I will be praying for you and your mom.  So happy for the progress.
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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