New Posts New Posts RSS Feed - our new forum
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

our new forum

 Post Reply Post Reply Page  12>
Author
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4479
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Topic: our new forum
    Posted: Oct 18 2016 at 9:37pm
Hi Nancy,

I sincerely wish you good luck in your upcoming treatment.

I think it is absolutely extraordinary that, with everything you have and are enduring with your own journey, that you found it in your heart to think about me and my daughter.
Incredibly considerate of you and I thank you.

We are all blessed to have this forum in our lives, populated by so many lovely, caring people.

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
Back to Top
Nankub View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 15 2016
Location: Michigan
Status: Offline
Points: 30
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nankub Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2016 at 5:02pm
Steve,
I also wanted to tell you how happy it is to hear of your daughters good health.

Keep shining bright,
Nancy
Diagnosed 3/13/2015 stage 4, age50, BRCA1pos,triple neg both breasts+lymph nodes,Mets to bone/spine rib,lungs,brain.8 months chemo,cyber knife on brain in 2015,2016.4cm tumor on adrenal found 9/30/16
Back to Top
Nankub View Drop Down
Newbie
Newbie
Avatar

Joined: Aug 15 2016
Location: Michigan
Status: Offline
Points: 30
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nankub Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2016 at 4:53pm
Hello tnbc tribe,
I'm getting ready to start radiation to a 4cm met on my adrenal gland.
I'm told I will be in a type of body cast and it will take 3 sessions to destroy it.
Has anyone had this type of radiation? I keep seeing 20+ treatments?
The same doc that did my 2 cyber knife treatments on my brain Mets is doing it. With that they put your head in a halo (horror) to be perfectly still and it only required one dose to each tumor. I had 5 tumors the first time(2015) and 1 the second(2016) there are 3 still showing up on the mri and since they were hit they are now dead and my body will clear them out like the others.
Any info or advice would be greatly appreciated. This radiation will keep me from having to go back on chemo

Thanks, Nancy.
Diagnosed 3/13/2015 stage 4, age50, BRCA1pos,triple neg both breasts+lymph nodes,Mets to bone/spine rib,lungs,brain.8 months chemo,cyber knife on brain in 2015,2016.4cm tumor on adrenal found 9/30/16
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13163
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2016 at 7:54am
Romnesprite,

I tried everything they suggested, but like you, found the actual aloe plant to work the best.  The relief was amazing.  My friend gave me their very old and large aloe plant when I was going through treatment.

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

Back to Top
romnessprite2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 24 2016
Location: Renton, WA
Status: Offline
Points: 152
Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2016 at 1:29am
Hi. I had 25 radiation treatments and got a very mild sunburn on the last 2 days. That was june 2. Now Im all healed up. I used fresh aloe vera plant leaves. It was amasing. I put it on before bed and by morning it was a lot better. I was skeptical of it but my friend bought me a small plant and even the nurse was surprised. Its kind of gooey clear stuff but dries quickly.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4479
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2016 at 9:04am
Hi Ssam,

thank you for sharing your positive story with us...

I am sure all here wish you the best of luck.

Next month will be my daughter's 12th year anniversary. She is NED (No Evidence of Disease). We are so thankful.

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
Back to Top
Ssam View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 11 2016
Location: UK
Status: Offline
Points: 37
Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2016 at 8:25am
Dear Steve, I just wanted to offer a positive experience of radiation, so far.  I have very small breasts and had 15 rads + 5 booster rads in April 2016 after 2 lumpectomies and although tiring, found the whole experience to be very manageable and almost pain free.  I had some reddening towards the end, but used bio oil and E45 3 times per day, every day which worked well for me.  3 months later now and my breast seems fine from the rad treatment.  Hope this might help other ladies who are worried going into this type of treatment.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4479
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2016 at 8:37am
Hi Mary,

yes, as Mark Twain said, "the rumors of my death have been highly exaggerated."  Smile
Just extremely busy helping some folks. I am flying home today and if wifi working will try to do some research for you.

Congrats on 7 years...My daughter's 12th anniversary is in two months and she is NED and fit.

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
Back to Top
MaryinSarasota View Drop Down
Senior Member
Senior Member


Joined: Nov 08 2008
Location: Sarasota
Status: Offline
Points: 362
Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2016 at 6:37am
Wow Steve, you are like that Energizer bunny....still going. Glad to see you still here. Did they happen to mention anything about late effects of radiation treatment or a link where I could find info on sternal wall collapse? It's been 7 years.
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
Back to Top
CrunchyGirl View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 07 2014
Location: United States
Status: Offline
Points: 39
Post Options Post Options   Thanks (0) Thanks(0)   Quote CrunchyGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2014 at 12:02am
Lillie, did the Gemzar trial you were in decide that it was beneficial? I am having a mastectomy with no radiation as well and I wonder what else there is to do instead of radiation since I don't need it.
3cm in left 31yrs 4 Red devil, 12 taxol, neg nodes, surgery July 2014. Tumors shrunk by 1cm all negative. Now cancer Free!
Back to Top
Powder View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 31 2014
Location: New York
Status: Offline
Points: 20
Post Options Post Options   Thanks (0) Thanks(0)   Quote Powder Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2014 at 9:21pm
Junobeach...I had two delays in my chemo.  I didn't tolerate the Taxol and was hospitalized each time after the first two rounds.  First time with C-diff and the second with Pancreatitis.  My doctor didn't want to risk repeated exposure to Taxol after that and switched me to Abraxane.  I just survived my first treatment without hospitalization!  One more and done.  Radiation next.
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13163
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 14 2014 at 9:43pm
Deb,

It's quite common for treatment to be delayed. Chemo aggravated my liver enzymes and caused some treatment delays. Sometimes the onc will reduce the dosage.

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

Back to Top
junobeach View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 13 2014
Location: new york
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote junobeach Quote  Post ReplyReply Direct Link To This Post Posted: Mar 14 2014 at 8:10am
Good morning,
        I have been doing a dose dense aggressive regimen. a/c 4xs every other week and then taxol 4xs every other week. My oncologist never suggested any clinical trial. I wish I would have read your post sooner on this subject. Im off for a blood draw the morning. it appears my liver has some inflammation. Im so hoping the counts are better today. Does anyone know of anyone having to put chemo on hold from this?
Have a blessed day everyone.
Deb
Back to Top
sosue55 View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 29 2013
Location: Ontario Canada
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote sosue55 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2014 at 11:47pm
I also had 4 rounds of A/C and 4 of Taxol but they had to cut the Taxol to 77% as it burned my finger tips so badly the first round. I did not have mastectomy just lumpectomy...after I learned that my BRCA 1 and BRCA 2 came back negative, my surgeon left that option up to me.  I am not sure further surgery would have made much difference in that the 3cm lump had clear margins, although I had one sentinel node removed as there was evidence of microscopic cells in one. Then there was controversy over whether to take more or leave them in...I'm a bit confused about that. Only that I guess they thought the chemo would take care of the cancer cells followed by 25 rounds of radiation.

Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3611
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2014 at 12:42pm
Hello Deb,
Welcome to the TNBC site.  I'm glad you came here for Support.
I did not have radiation.  I had a mastectomy and took part in a clinical trial which did not require radiation after a mastectomy.  My chemo was dose dense cytoxin and adriamycian x 4 and then dose dense taxol and gemzar x 4.  (the trial drug was adding gemzar to an aggressive Standard of Care regimen to see if gemzar made a difference.) 
What chemo regimen are you on?  Sometimes that makes a difference since cancer can travel through the vascular system and chemo is all we have to fight with. 
 
I am sure others will be posting to share their stories and thoughts about your question.  This is a wonderful place for support because we all UNDERSTAND about TNBC.
 
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
Back to Top
junobeach View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 13 2014
Location: new york
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote junobeach Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2014 at 10:22am
Hello all, Ive been getting by a little easier these past months with the support of this forum. I am close to the end of my chemo.I have been to 3 drs for radiation consultations. I have not received a comfortable regime yet from any. My question is, is radiation always a must with tnbc? I was a stage 2, had a double mastectomy, 2 nodes with isolated cells (considered neg), tumor size 2.5, and overall grade 2. Another thing I would like to understand more. Is the ki67, I notice that most of tnbc dxs have a high #. My ki67 was <3% not something I see at all on this forum.
Deb
Back to Top
sosue55 View Drop Down
Newbie
Newbie
Avatar

Joined: Dec 29 2013
Location: Ontario Canada
Status: Offline
Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote sosue55 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2014 at 8:04pm
Thanks for sharing. I am scheduled to start radiation 25 treatments in April...I have 2 more chemo treatments left to do. I really am leery about getting radiation but reading the posts on here have decided it is necessary to give myself the best chance for survival. I had a lumpectomy on left breast in the fall of 2013, TNBC, negative for BRCA gene mutation, have done 6 cycles of chemo so far. A few side effects but what I miss most is my swimming. Previously was doing my exercises at the pool at least 3x a week. I will be so thankful when I can put this behind me and announce that I too am a survivor!
Back to Top
Annie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 19 2008
Location: Canada
Status: Offline
Points: 886
Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 4:55pm
Hi Lee21,   This is interesting, makes sense. I just had 8 x-rays to check for anything under my shoulder, ribs, probably a pinched brachial nerve and lymphedema but they too had me hold my breath for some of them which we are used of doing of course for something like this. I did not have it during radiation treatment but I was probably in the clear... thank you and take care...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
Back to Top
Lee21 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 22 2011
Location: Michigan
Status: Offline
Points: 736
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2013 at 3:09pm
For breast cancer, respiratory gating is reserved for radiation to the left side since most of the heart lies on that side.  Additionally, as I understand it, the rad onc determines whether respiratory gating is required during simulation.  It is possible that one's physique is such that no gating is required even if on the left side. It is generally not used for radiation to the right side.
I found this link to the UCLA website explaining respiratory gating:
http://radonc.ucla.edu/body.cfm?id=102

12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
Back to Top
Annie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 19 2008
Location: Canada
Status: Offline
Points: 886
Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2013 at 9:31am
    Hi All,   I do not remember ever having to hold my breath. It would be good for the Oncologists to have a somewhat universal protocol on this but lets face it ego can always get in the way. Hopefully the more current methods and equipment reduce the incidence of heart damage, sure hope so...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.