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Rsprite3 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rsprite3 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2016 at 1:11am
Thank you Kirby. Im romnessprite had to change my name for the 3rd time on this site because i keep getting locked out. So thats why Im R3😁.
   You are right I have had low thyroid in the past. I will have it tested again.
Ry keep us updated on your moms surgery.
   I just got over an infection and they had to remove the implant and now the flat skin is puffing up again. I was useing my arm alot to sand a bench Im refinishing so I hope thats all it is. I hate not being able to do stuff I used to do.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2016 at 8:02am
Rsprite3,

I agree with Kirby about having your thyroid checked.  I found that after I finished radiation I was diagnosed as hypothryoid.  The rads affected my thyroid and now I have to take medication for it.  Here are the threads:

http://forum.tnbcfoundation.org/thyroid-issues_topic9843_page1.html



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 Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2016 at 11:57am
Can anyone point me in the right direction please for more info on what ladies here have done if they find out they are BRCA positive? Thanks everybody.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2016 at 12:32pm
Ssam,

The BRCA test in the United States is usually done in the oncologist's office.  It's a simple blood draw that they send off for testing.  Here's a link to BRCA testing information in the UK:


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 Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2016 at 12:42pm
Thanks Donna, I had the test done a week ago. 3 more weeks to wait for the results here in the UK. I don't fit their TN profile so the genetic counsellor said she expected my results to be positive, feeling rather wobbly about it all today.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2016 at 8:33am
Ssam,

Please let us know when you get the results.  I'm sure the waiting part is tough.

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: Aug 29 2016 at 3:17pm
I cant believe the time is here but tomorrow is the day of the surgery for my mom. I kindly ask as I cant be there...that if you wouldnt mind, lifting my mom up in prayer and that any fear she has.....that she is comforted that she has the best surgeon and that everything will be okay. She is my everything.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2016 at 11:19pm
Originally posted by RyB1984 RyB1984 wrote:

I cant believe the time is here but tomorrow is the day of the surgery for my mom. I kindly ask as I cant be there...that if you wouldnt mind, lifting my mom up in prayer and that any fear she has.....that she is comforted that she has the best surgeon and that everything will be okay. She is my everything.



DoneHeart
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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2016 at 6:29pm
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2016 at 7:09pm
Hello everyone!

So mom's surgery is complete. I was on pins and needles all day....even to the point where I had hiccups throughout the ENTIRE day that would start, stop....then start again an hour later then stop...then come back again...then stop...and so on lol

Apparently, the surgery went really well.
They removed the tissues of where the tumor WAS. The incision is kind of under the breast and under the armpit. Apparently, it was a LONG/ALL DAY surgery where they had to insert a wire and then do the dye procedure as well to create a path for the surgeon to check.

Apparently, only 1 lymph node very slightly lit up. She checked very thoroughly with the lymph nodes. I'm not sure what the general procedure is but I was told at the pre-op appt, normally 2 are taken out. Well, she checked the second one and there was nothing there, so she left that one in and took the one that lit up out.
Everything was sent off to the pathologist and we should be getting the results as some point this month. We will be meeting with the entire team again and finally....I believe radiation will begin.

I was very relieved and happy when I came home LATE last night from vacation and was greeted with her beautiful smile and a hug :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2016 at 8:36pm
Ry: thanks for the good news! Your Mom is in good hands ! I believe they only removed the one lymph node to not put your Mom thru perhaps unnecessary surgery. If the 2nd one is not abnormally enlarged, that's great news.
Your Mom is lucky to have you, keep us informed, 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: Sep 14 2016 at 6:26pm
Hello Everyone!

I hope everyone is doing well.
So, today we got the pathology report. According to the surgeon, it was a VERY GOOD report and she was very VERY pleased with it.
So here's what we got. Apparently, my mother did not have a PCR and there is an explanation for this. I'm not sure if you remember my post back at the end of July/early August, but they had to cut off her Taxol after 6 treatments because it was doing something to her lungs. They believe that IF she had continued with the Taxol and did the full 12, then yes....she would have had a PCR. The chemo eliminated 90% of the tumor with only 10% left. The surgeon went as far as she could to remove ALL of the tumor/or any tissues of where the tumor was....which she did but it was deep and it's not hurting her at all.
The tumor has not grown and is not growing at all. It's not even close to being 1cm. Much less than a 1cm tumor.
According to them, it's just THERE. It is due to it being very deep as originally, the tumor was very deep but was not touching the chest wall. The lymph nodes are confirmed 100% negative and the cancer cells/tumor never made it to the lymph nodes. The margins were nice and clean.
The next plan of action is....radiation to kill the remaining 10% of the tumor and then there is strong talks (we will know more on Monday) that she will be placed back onto chemo...but more of an Oral chemo.

Overall, mom is somewhat bummed that she will most likely be placed back on chemo yet again. I was a little bit bummed that there the tumor is not completely gone, but I am relieved that radiation is next and that another chemo will most likely occur after radiation as there will be medicine to clean up any traces of cancer that could be left.

Overall.....we are very pleased, happy and relieved this journey is almost over. The surgeon is VERY happy and so are the radiologist. I'm sure the oncologist is very happy as well once we see her.

More updates to come!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2016 at 5:08pm
Hello everyone!

So I've got an updated....and also clarification.
So its either my mom heard it wrong or the surgeon didn't explain it clearly.
In regards to the remaining cancer.....there is no remaining cancer currently in my mother's body. When they cut her chemo off after 6 treatments of 12, there was 10% of the tumor left (90% was eliminated). They do believe that if she could have tolerated the Taxol, the tumor would have definitely been cleared up completely and she would have had a PCR.

So by the time the surgeon was able to do the surgery, because it was so deep....yes there was 10% left. So that makes more sense instead of there still being cancer in her body currently. So currently...right now there is no cancer in her body. This was clarified by the oncologist.

The next phase of treatment and i'm not sure if anyone has gone through this before:

Radiation starts not this week but next week. It will be about 3-4 weeks of radiation, 5 days a week....but here's another twist which we did not expect.
The oncologist says a form of "insurance".....she wants to put her BACK on chemo for the 6 weeks she didn't have the first time and she will chemo AND radiation AT THE SAME TIME! Obviously, its just a way of making sure any left over cancer cells that MIGHT be around...can be killed while she goes through radiation.

We did not expect to hear that and it was definitely overwhelming. I can only imagine what my mother is thinking.

She will put on the oral pill, capecitabine chemotherapy.
She showed up the statistics and it's like a win-win situation. 89% survival without going on chemo again, where it will increase to 93% with chemo and radiation at the same time. Obviously, we are going for the 93%.

So there's the update.

I'm taking a leave of absence starting this friday from my job to guide and care for her for the remaining treatments going forward.

Has anyone else experience of doing chemo AND radiation at the same time?
Any advice or information is greatly helpful.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2016 at 7:52pm
Hi RyB,

The old brandname of capecitabine is Xeloda.  A lot of people on this forum use the name Xeloda instead of capecitabine.  If you scan through the forum, there are several threads that relate to Xeloda, including a long thread with a title like "Residual cancer...what to do?"  and others.  As I recall, there were several posters who did simultaneous Xeloda with radiation.  I think was was Warrior31, but that's just going from memory.  If I remember correctly, she did have stronger radiation burns, possibly due to the simultaneous nature of the treatment.  I believe I've seen others do it without issue.  I think there are some clinical trials that are testing rads with concurrent Xeloda or Carboplatin.  So it does happen.

As far as side effects of Xeloda, for the majority of people, it is far easier than ACT chemo.  Many people call it "chemo-lite" because it is much easier (plus no hair loss).  That being said, you may notice that one of our forum favorites, Jacklin, did recently post about having had a bad reaction, so of course that can happen.  But in most cases, if someone is feeling strong side effects, the MO can just lower the dose and the side effects become more manageable.  The side effect profile is slightly different from ACT chemo.  The most common side effects are diarrhea and hand/foot syndrome (HFS).  I didn't experience any GI issues whatsoever during my 8 rounds of Xeloda, and only mild HFS during rounds 3 & 4 (and very very very mild at other times).  Overall, I didn't really feel like I was on chemo because it's a pill, so no infusion center, plus hair grows, plus no nausea, neuropathy, etc.  So it is hard to predict what will happen with your mom, but it does seem like the side effects are *typically* manageable, and if not, doses can be tweaked to make them so.  But there can be unusual and extreme reactions, which our friend reminded us of.

Your mom is lucky to have such a wonderful, devoted daughter.  You may find that she is totally fine during this next phase.  I was totally fine during radiation, kept teaching, piece of cake.  Only got red towards the very end, and it was absolutely fine, just like a sunburn.  I had no problem driving myself to radiation.  And for me, Xeloda was also a piece of cake.  So it's nice you'll have time off to spend with your mom, but you may find that is just a nice thing, and you two can enjoy each other, but that your mom is completely able to manage by herself.  Everyone is different and it's so hard to predict.

Good luck to your mom!
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 03 2016 at 11:41am
Thank you very much Tulips for the comments about this chemo.

She is starting the chemo today and I'm hoping she breezes through this as well as radiation at the same time with minimal side effects as possible. Also...I am her son just an FYI lol!!!!! A little hard to tell through the internet hahahahaha.

I am going to check out that thread as I want to learn as much as possible about this chemo as we also received information about it through the doctor as well.

Prayers to you all and never EVER give up!!! You all are in my thoughts whether you are currently fighting now or a survivor as this month as most of us, if not all of us know that this month is Breast Cancer Awareness month!

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Post Options Post Options   Thanks (1) Thanks(1)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2017 at 7:17pm
Hello everyone!

It's been quite some time!
I hope everyone is doing well these days.
I wanted you to all that I still send you all prayers and I do quite often still come to the forum and check on everyone. Just haven't really had the time to really respond or give you all an update about my mother.
BUTTTT....if you have a quick second here is the update:

Quick update: Mom did as best as she could and beasted the radiation. It was tough and the during the last week, she had to have a few days postponed because she was badly burned. She finished everything the day before thanksgiving.

Right now, she is on the final 2 week dosage of the Xeloda and she is .....DONE!!! finally, this journey is over and she will be back to going back and living her life again.
Her radiologist appointment was last week and they told her "we will see you in a year."

Her mammogram is coming up March 10th and today we had an appointment with the oncologist. Everything seems to be going the way we all hoped.
At each appointment, they do an exam and no new lumps or anything. According to mom, she still has some breast pain and apparently, its still somewhat swollen.

As this journey is nearing, me personally, I am now shifting the focus back to me and getting my life in order as well as making major major changes. I just acquired a New job FINALLY in my field, however I am ready to relocate and start over fresh.


Overall...everything is going exceptionally well for her and her NEXT grandchild is coming late March/early april.

How is everyone? Please let me know.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2017 at 5:33pm
Thanks for your update on your mother... I don't think you should be overly concerned about the radiation, I'm just telling you about my experiences where my wife has had lots of radiation...I think it kills stray cells that might become a tumor, (I am not a doctor, please do not sue me)
I'm not familiar with Xeloda, it has not been recommended for my wife. I know it has benefited patients.
My wife has had some aches and pains for 6 months, after procedures ,it's not always a sign that's something is wrong...
It's great to hear you have been looking out for your Mom, and have a new job that you are excited about, it's very hard to juggle the two, and want to know how things are going for your Mom and you in the future...
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 (1) Thanks(1)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2017 at 8:54pm
Hi RyB,
Thanks so much for the update.  It's so great to hear that your mom is finally almost done!  One long year, of course, but obviously the worst is over.  I hope she has been managing well on the Xeloda.  Finishing X is such a funny thing....it's not as obvious as your last day of radiation or infusion chemo, where you might ring a bell, or say goodbye to some of the awesome people who have been taking care of you, gift-giving, etc.  It's a big deal to finish Xeloda, but since it's just pills you take at home, it's a more private wrap up.  But my family went out to dinner to celebrate, and there might have been some champagne involved ;-)  I hope your mom finds a way to celebrate.

You have clearly been an A+ son, and it's great to hear you have moved some attention on to your plans and a new job--congratulations!  Also, I see you are in RI--me, too.  Did your mom do her treatments in RI or does she live elsewhere?  I was thrilled with my care, although I got second opinions at Dana Farber.  I feel very lucky that our little state has so much to offer.

It may feel strange to your mom, moving on from so much attention on her cancer (both medically and personally.  Medically, she will fairly quickly move into a pattern with far fewer appointments than she's been used to, and personally, I think it's common for people to stop asking so much about your cancer and sort of move on).  This is a wonderful change--it's freeing and it's great to expend energy on other things!  At the same time, it's not unusual for some people to have a slightly hard time adjusting back to normal life, especially regarding fear of recurrence.  There's a real range of how people feel about this, but it sounds like your mom is a high energy trooper, so I bet she'll do just great.  It makes sense for you to put your energies into your new job now, and trust that your mom will thrive!

Take care,
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RyB1984 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 5:17pm
Hello everyone!

Back again.
I still have been a lurker and keeping track with all of you.
I hope you all are doing well and for those that are struggling and fighting, i am still praying for you all.

Tulips- I bet any money we probably have crossed paths and didnt even realize it. Yes, we went to the cancer center at RI Hospital. E X C E L L E N T place!!!

I have great news everyone. Mom completed her Xeloda a few weeks ago and close to a month ago, she had her 3D mammogram. We were concerned because she was still tender in the area.
Got the results, RIGHT away and through the mail.

No evidence of cancer in EITHER breast. She is officially completed all of her treatments will see her oncologist every 3 months and her next mammogram in September.
I celebrated my birthday ALL month long and got to have her here with me which is a blessing. Another great blessing for her...is she is a grandmother again.

She's finally able to get back to her life as well as start rehabbing her arm for tennis again. Today, she had her port removed.

Just this time last year, I was secretly having break downs every night because I was faced with maybe not having ANY parents with me anymore and 1 year later because of the support from friends, family, even YOU ALLL...and of course, GOD....she's here, healthy and cancer free.

I thought you all should know as you all have been so caring and concerned on this journey.
I thank you all and will keep in touch.

Sending much love.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:18pm
RyB198 : thanks for the update on positive response to Xeloda, it means a LOT to hear your update! That is amazing and I will pass on to my wife's doctors, so glad to hear from you! G
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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