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gordon15 View Drop Down
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    Posted: Oct 22 2018 at 4:28pm
RyB1984 : Please know I feel your pain. I took care of my Mom, although my Dad and her were not on good terms, and my brothers were no help, you obviously rose to the responsibility. The fact that even your Mom's oncologist was shocked at her crisis condition tells me her immune system was weakened, maybe from her chemotherapy. My Mom's was also, and by the time I was able to help her, it was in her bone marrow and after 2 transfusions, it was futile.It's not your fault she got pneumonia, these things happen. I know you miss your Mom terribly, but like you, I cherish her remembered words, and try to apply them to our family.

Edited by gordon15 - Oct 23 2018 at 12:58pm
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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2018 at 9:33pm
Hello again RyB, I remember you and your mom. What you went through is hard to describe to people who haven't experienced it but you have done a beautiful job of the telling.

I was the caretaker for my dad and I remember so many tiny details of that journey. The last thing he said to me was, 'are you going to be ok honey?'. I didn't have the heart to tell him I was going to fall apart but I knew that I would.

Strangely, but in a beautiful way, I swear both my parents came back for a visit. Each one gave me some extraordinary advice. Mom came back during a time when I was being crushed by an attack from all sides when I was trying to tie up her estate. She came to me and very calmly said, 'Stop trying to catch all the arrows'. I swear that was a turning point in my life and it helped me so much to understand there's some things you just can't catch and so you have to let them land on their own.

I hope you can find a way to let some of those arrows fly past you so that you can hold onto what's most important to you to go forward. Sending you strength.
   Mainy
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 snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2018 at 5:28pm
That is a sad but beautiful story. She is rejoicing in heaven with those went before and waiting for you. Make her proud of your life. Its very hard to lose both parents. Just keep going. Im sure you did NOT fail her in any way. Its awful to beat the cancer and then get pneumonia. I will put you in my prayers. God bless you.
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 RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2018 at 10:58am
Hello everyone!

I know it's been a long time since I've posted on here. At times, I do come to kind of see how everyone is doing and if there are any updates on people and their treatments.

First off, I just wanted to say I appreciate all of your thoughts, prayers and hopes regarding my mom's journey through treatment.
It really meant a lot to me and it helped not only me but her get educated about her journey through this ordeal.

You may or may not want to know what is the update regarding my mom's journey.....

Well, mom and I had our final conversation on 09/18/17. It was just her and myself. I can replay the day entirely until my last breath. I believe with everything she and I went through, how much I was willing to lift heaven and earth for her as well as sacrifice myself for her, it was a gift from god that my administrator and senior manager literally drove me and my car to the hospital so that I could get to her immediately.

I told her, "I don't think I can do this without you" and she replied back to me, "you can and you will do this life. You will enjoy your life and marry a beautiful woman. You go for all of your dreams and do everything you ever wanted."
I was emotionally at the lowest I have ever been in my entire life and I asked her, "If I failed her because I feel like I did." and she replied to me, "no. you did no such thing. You did absolutely everything for me."
I told her I love her so very much and that she was the best. She replied back to me that she loved me so very much. I also said, please tell dad I miss him and love him so much.

The only thing I wish I said to her was to "please, never leave me. Show and prove to me that you are around me at all times."

She passed away on 09/18/17. Her oncologist came to us while she was still here but she was unresponsive when she got there as she was medicated. She was in shock and hysterical as she and my mom grown to have a very caring relationship towards one another. The day was emotionally draining and although many family members and friends were there saying their goodbyes, I had and still to this day never felt so alone in my entire life knowing that my queen was getting ready to head to heaven to be with our Lord, her parents, one of her brothers and her very missed husband (Dad).

She died from acute respiratory failure due to pneumonia. Otherwise, her cancer was at bay and not doing anything. Not one tumor in her body at the time of death and once again, proving that she was still fighting and beating the cancer up.

One year later, I have not been the same since and it's been a very challenging year for my entire family and myself. That smile I was known for has been dimmed immensely and I do unfortunately, walk around like a zombie/robot. I am getting help, but my heart is forever broken. I love both my parents so very much, but......there is just something about a mother.....that's all I can really say.

Once again, I am so appreciative for all that you said on here to help us through. I will continue to check in every once in awhile in other forums and my prayers are with you all.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 7:05pm
So as we have taken steps forward...of course, we take a step backwards.

Long story short, my mother had not been feeling well this week and on Friday, I brought her to the cancer center to be checked out. The doctor just didnt feel confident about letting her go home and momma dukes was admitted.
I had been suspecting that maybe she caught a cold, collapsed lung, possibly pneumonia....etc. Blood work was "good" but something was going on.
After tests, chest x ray and a cat scan....im just gonna thank you lord that its not somethint exceptionally bad, but Pneumonia is not fun. Yup, somehow my mom has pneumonia. Friday night before i left the hospital, she was running a fever. I knew something wasnt right while her oxygen levels never went lower than 95%.

Well, she began antibiotics yesterday and her fever broke last night as she was sweating.
Since then, all her blood work is going back to normal however the heaviness and shortness of breath is still there, but baby steps seems to be improving now as shes coughing it up.

Ughhh lol. They are going to keep her a few more days but i am at peace and relieved they made her stay at the hospital. Im just thankful shes being looked after and this week we start the next treatment plan (100% confirmed).

Thank you to all for the positive vibes n replies. Ill keep u all posted as usual. 😎😁 thank you susaninva for the kind words.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 5:15pm
Hi RyB,
So good to hear from you again.  I think all the way around, you had wonderful news to report!  I hope your Mom will gradually regain her strength and resume her tennis play in the near future.  It sounds like her doctors are keeping a close eye on her, and I'm so thankful to read that her scans came out clear.  I'm also glad to hear that you are keeping a close eye on her - you are a wonderful son! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2017 at 5:25pm
Great to hear from you! Oxygen , to me, is a good idea, that boosts energy for your Mom and I don't know if Carboplatin works all the time, but my wife was given Carboplatin-Gemzar chemotherapy, and she is stable today, hope the same progress for you Mom!
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2017 at 7:58pm
Your mother's response is extremely encouraging!  Best to her and your family.

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 RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2017 at 6:35pm
Also want to add that they also did a scan of the brain as she was complaining of some headaches/migraine for a short while and that came out NEGATIVE as well too.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2017 at 5:45pm
Hello everyone!

Just doing my check in however I am always visiting the forum on a daily basis.
I still pray...EVERYDAY for you all and your battles that you come out STRONG and VICTORIOUS.

I just wanted to give you all an update on Mom's progress as she continues with Chemo (Carboplatin).
She has completed 3 treatments and this journey has been quite a rollercoaster. The fluid on the right lung has now decreased from 150CC's to 25ccs.........25CC'S everyone. That is excellent.
There is now strong talk of having the catheter taken out.
Almost 2 weeks ago, it felt like we had a setback. At the doctor's after having the fluid drained, my mother was still saying she had shortness of breath. Well.....this fluid decided to fill up on THE LEFT side.
Definitely was taken aback on that one. They drained 1000cc's on the left and has since NOT filled back up.

So on that note, a Cat scan, chest x-ray or pet scan (im getting them all mixed up lol) was taken and her body scan was just days later.
Long story short, both body and ALL other scans showed nothing suspicious or anything of cancer. All negative and normal. There was a lymph node that was slightly enlarged that has since shrunk some since. The doctor said this happened last year and then the lymph node went back to normal. Still, she confirmed it......we have no measurable size of disease in her body. P R A I S E god...This carboplatin is CLEARLY working one way or the other!!!!!!!

The only problem is that that 1000cc's fluid that was found on the left side of the pleural and was SUPPOSED to be sent off to be tested...well.... this past wed, the oncologist(according to my mom), came into the appointment MAD and HOT as hell because someone dropped the ball and the fluid was never tested and was disposed. Oh...no...the oncologist is/was so upset as this was an indicator on how this chemo is working on my mother. I believe there may be some talk now about her continuing with the Carboplatin but possibly doing a trial with Immunotherapy at Dana Farber now.

As of now, there seems to be some suspect of maybe something going on with her heart (possibly some kind of heart disfunction), possibly due to the AC from last year. She still has some shortness of breath. We have a visiting nurse that comes and the doctor checks her lungs and according to them, mom's lungs sound clear! (FINALLY) Since this has started, a company who delivers home oxygen has brought oxygen tanks to the house and momma dukes does oxygen every other day-every 2 days (really she is only required to use it when she needs it) as obviously this helps keeps the organs working correctly. I will say this home oxygen gives me personally, deja vu, as my father had to do the same thing but he had to have it on at all times and unfortunately, the ending result was that he died the day after Xmas, in 2005. Completely different situation but it's at times emotional.

Hopefully, we can tackle if there is a heart issue and why there is still shortness of breath as mom is ready to return to tennis and be very active again.

There's the update people.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 19 2017 at 4:50pm
RyB: thanks for the update on your Mom, we are fighting this with you.
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 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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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 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 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 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 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 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 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 8:50pm
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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