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MomMom44 View Drop Down
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    Posted: Mar 20 2015 at 12:22pm
Adding to my previous post, the OvaNext test came back Negative on all gene mutations. Yea!! FYI--There are many gene mutations identified, where they have NOT identified what kind of treatment is warranted, should they test positive. BUT, it's always good to have as much information as you can about these mutations. This is one of the most active areas in cancer research with ongoing discoveries being made about what to do with this information.
Paula
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2015 at 7:22am
Cindy52,

Mommom44 offered some good advice.  If you have any history of cancer in your family, you might want to speak with a genetic counselor.  They can review the family tree and medical history and determine appropriate genetic testing.  There are other genes besides BRCA that increase the risk of bc.  Here's a link to the full BROCA gene panel test and associated cancers.





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 MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2015 at 6:14am
Yes I had it done last January when I was diagnosed as it made a difference to my surgery. I was Braca 1 & 2 negative & had a lumpectomy. But had I been positive, I would have had a BMX and had my ovaries removed. I was almost 67. My insurance paid because my mother & great aunt both had BC (post menopausal). There must be 2 relatives. However, if you do get tested, be aware that it costs no more to get a full panel that tests for ALL breast cancer gene mutations. Ask for that! Please PM me for more info. Because of the BC & colon cancer on my dad's side, I was recently tested through OvaNext by Ambry. You should meet with a geneticist. Best, Paula
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cindy52 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 19 2015 at 5:03pm
I was recently diagnosed; had lumpectomy,and I am having port placed and starting chemo in 6 days.
I am 62 years old. I was denied BRCA testing by insurance - cut off is age 61. Admittedly, risk is fairly low, but I feel testing is important for all TNBC as it influences treatment decisions. I noticed some other members over age 60 on this forum and I was wondering if they had difficulties getting genetic testing done? Any suggestions?
Dx IDC 02/15,Stage 1b, Class 3, tumor 1.2 cm, nodes 0/1. lumpectomy 2-24-15. DDAC- 4 cycles; taxol weekly x 12. Planned radiation after chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2014 at 8:02pm
Simple, I'm sure you are glad to be done with Chemo and Surgery! Good luck on your path results, rest, recuperate and get ready for the final part of your journey! I was operated on Feb. 13th last year! Finished with my Radiation the end of May.   
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2014 at 6:27pm
Thanks Lillie,  I'm 3 days post surgery.  I'll be having rads next.   I'll probably get my path results this Thursday.  
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2014 at 3:03pm
Hello simplelife-Kay,
I'm glad you have your treatments and surgery behind you.  Will you be having radiation after surgery?  
Stay strong and you will be feeling better soon.
 
God Bless,
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 simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 5:38pm
Organic peanut butter on toast was my "go to" food while on AC (and taxol).  It tasted ok, had lots of healthy calories and was easy to fix.  I'm just over four weeks out from my last chemo and I had a lumpectomy and ALND disection two days ago.  I'm feeling pretty punky with that right now, but I know it will get better.  This is just temporary.
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 4:09pm
Having the constipation is also a good reminder to up your intake of water. The BPA free water bottles that have measuring lines on them worked great for me and I had good luck with the ones that had filters in them so that tap water actually tasted much better.

With the foods, I found that what I craved and tolerated well changed daily. It was so frustrating. V8 was my friend for a long time and then it began to taste like industrial waste. I switched to red pears and cottage cheese and then to baked potatoes without any garnishes on them. Red meat did appeal to me so I tried to get just the leanest cut that I could.

On chemo I lost close to 40 pounds, much of it from muscle wasting, annoying because at my age getting muscles back in tone ain't no easy feat! Even though I walked a lot and even hiked at first, I found it challenging to get as much exercise as I wanted.

Oh yeah, baked yams worked well for me, I would slice them up and tuck them into the oven and then sometimes I'd steam some green beans to go with them.

On the days when I couldn't find anything that worked I used a protein powder shake that I added diced apples, blueberries and a banana to. Then I knew I'd get the vitamins. The good protein drinks have a hearty dose of vitamins and supplements and so much better than Ensure that for me was just too goopy.
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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 11:06am
OMG, we need to contact the medical journals! CONSTIRRHEA is the best descriptive word for what chemo causes, it needs to be made official! That and "chemopause" for the Godawful instant menopause chemo threw me into should be the official medical terms the doctors use! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 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 MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 10:58am
Mainsail, Wow!! I can't believe the intense nausea I had could have been due to some adrenal issue! I was born with only one kidney and one tube and possibly only one adrenal. I have a lot of problem if I ever take Predisone and come off of it too fast for my body. I need to taper off way longer than the average person otherwise I've been told that my adrenals can't handle it. I reluctantly took steroids during my chemo. I was so nauseated.......took 4 different antinausea drugs which helped but still it is the overwhelming thing I remember..... I'm going to talk to my onc about it.....see what he has to say.....maybe I'll educate him!! LOL He had never heard of going to a physical therapist to over come vaginal issues after Chemo either!! :)
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherry1716 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 10:27am
Just finished my last AC and have a month break to go to Florida to the beach and to see my new grand baby! I will then start weekly Taxol for 12 weeks. I've heard mixed reports about it but most say the weekly low dose isn't as bad as the AC. My fingers are crossed! I loved your name for the dreaded condition of consterria. I finally got a prescription from my Onc that has helped the hemmorrhoids and cured the fissure. I'm taking Miralax every day and Sennocot at bedtime and controlling it better. Just came off Dex and Zofran today and worse side effect so far is the chemo rash I get every time. Using a lotion mixed with cortisone keeps it from itching and I take benedryl. I hope this post finds you feeling good and I appreciate your replies! Don't know anyone in my shoes with this TNBC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 3:13pm
sherry, I am just finishing up my AC treatment.  I invented a term for what you are describing.  It's 
"constirrhea".  It's when the chemo gives you diarrhea and the anti-nausea drugs give you constipation all at the same time.

I feel like I've had constirrhea for the past 5 days.

Actually, Miralax has been my friend through AC and a cup of coffee each morning.  This last infusion seemed to tip me over the edge on the chemo caused diarrhea.  It's a balancing act for sure.
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherry1716 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 2:27pm
I agree that it's a balancing act. Just had my 3rd AC yesterday and I'm trying to be more proactive. I read that the mouth sores and painful gums can be helped by eating crushed ice during the infusion. We'll see if it helps. I also was given ginger chewing gum and ginger mints by a friend who just finished the Taxol. Love the gum, but it's pricey ($8) for a pretty big pack and you can get it from the pharmacist behind the counter. She also gave me the wrist seasickness bands.
A good tip for those wearing wigs is to baby power your head before slipping on the wig. Keeps it fresh and slides rt on even when you're in the stubble stage. I am so appreciative for all the tips to make this journey less unpleasant .
My biggest challenge last treatment was constipation. I took the recommended remedies and got diarrhea, so this round I'm taking the Miralax every day and adding prunes and fibrous fruits and veggies to see if that helps. Hope you are doing okay and all this will be behind you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2014 at 12:24pm
Sherry, I just had AC#3 seven days ago.  I agree, it's a balancing act between the nausea meds, constipation and diarrhea.  I'm sorry that the zofran is causing you headaches.  It would be worth it to let your MO know because they can prescribe other things.  I also noticed I'm craving protein which I think is due to my body trying to build back up red blood cells.

I am able to tolerate zofran and take it every 8 hours.  It's constipating, so I take Miralax every morning.  It seems to do the trick to counteract the effects of the zofran.  Even with an Emend IV pre-infusion that lasts 5 days, I take zofran, phenergan, and wear a scopaline patch.  With all that I still have bouts of nausea.  AC is just a hard chemo in terms of side effects.  Let your MO know what's going on with you and the nausea.  There are LOTS of other medicines that can be used.
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherry1716 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2014 at 11:10am
Hi,
Just had second AC infusion and it went much worse than the first. Lots more nausea and constipation, then diarrhea . I was afraid the Zofran was causing the monster headaches, so skipped it day three. Big mistake! There seems to be a fine line between nausea and hunger with me. When it hits, I have to eat something immediately! I don't want to gain a lot of weight so this is a problem. Also having strange cravings, like v8 and beef. Wonder if that means my red cells are getting low!   Reminds me of being pregnant! Feeling a little better today (day 5). Hope each day gets better. Good luck to you all!
Sherry, age 67, stage 1
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2014 at 11:02am
An insight I learned from my sis who had terrible nausea and vomiting was to have your adrenal levels checked. It's an easy test and I noticed that MD Anderson is offering it on a regular basis now. But one of the side effects of an over worked adrenal is nausea. Since all of us are under enormous amounts of stress it's logical that it would put the adrenals at risk. Anyways, it's a simple test and easily addressed but rotten if not recognized. Best of luck to you.
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2014 at 10:09am
Dear simplelife and Sherry,

tough way to spend New Year's Eve but, hopefully, the treatment works. 

Sherry, you will most likely lose all your hair. My daughter decided to shave al her hair off before she lost it so that her wig fit better. By the way the American Cancer Society has a program where you can get free wigs. 


There is a wonderful book called Turning Heads written by my friend Jackson Hunsicker. 


This book helped my daughter a lot as she went through chemo.

good luck to you both and all here.

warmly,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2014 at 9:28am
Sherry, I also was at the infusion center on New Year's eve getting AC #3, so I must be exactly two weeks ahead of you.  I get IV Emend with my infusion for nausea.  It covers the first 5 days, but I also take Zofran every 8 hours and phenergan for breakthrough nausea.  I seem to have a lot of it, so this time I'm also using a scopaline patch.  I have I hopes for it.  I change it every three days.  Other than sleeping a lot, AC is going fine for me.  I just have one more infusion to go after this since I did my Taxol first.

I have very little hair left.  It's about a 1/2 inch long and I can see my scalp through it easily.  I'm going to shave it all off after I'm completely done with chemo.  Hubby is just curious how much hair I will have at the end....I don't mind going along with that.  He's been so supportive, it's the least I can do.

I just found out that I'm BRCA negative.  I'm happy about that.
DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherry1716 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 02 2014 at 9:17am
Thanks for the reply. Just had my second AC on New Years Eve and feeling pretty good so far. I'm still on Zofran and Dex for one more day. No nausea or queasiness so far, just a little headachy. Onc thinks the terrible headaches are when I come off the Zofran and he gave me Fiorcet. They only lasted 2nights, thank goodness. My hair came out on 3rd week after 1st treatment and I got a great looking wig for going out. Wear my soft hats around the house. Hope you are doing okay and counting down the treatments like me! Over all, I feel very lucky that it hasn't been worse! Prayers for you and happy thoughts!
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