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3 years out, now liver, lung mets -

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btstark2003 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 9:48pm
So glad you are feeling better 11ty! Your attitude is great and prayers are being answered. I have had to start a written list of my TNBC sisters so I remember everyone i intend to pray for and you are on it - i am developing little bit of chemo brain (memory not great) and i find that i need to keep a lot more list than i used to!

Peace and love,
Beth

2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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nonna1642 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2013 at 10:44pm
Hi 11tybillion,
 
Hope the birthday party was happy & nice and that things went as you wanted.  Everyone is here for you whenever you want.  Go and enjoy your life to the fullest.  An old saying is you can't change the past and you can ruin a very good present worring about the future.  So enjoy every day as it comes.  I have learned everything in life is in God's time not ours.  My prayers and thoughts are with you.Hug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2013 at 7:10pm
11tyBillion,

Appreciate so much your taking the time to update us after your 1st chemo.
So good to hear you are doing well.
May you be a minimalist when it comes to side effects.

The following thought is along the lines of what you and others have said.
Have heard a useful phrase:    (adapt as one chooses)
       There are some days when I do not talk about anything related to cancer....
              and today is one of them.             
                   (One can use this phrase for as many days as one wishes........even always!)
                   (Spouse or other person can also say for you:
                                  There are some days when she does not talk about anything related to cancer....
                                               and today is one of them.)   


With lots of caring and positive thoughts,
Grateful for today..............Judy
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btstark2003 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2013 at 10:51pm
Thank you Judy for that very useful phrase!

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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11tyBillion View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 11tyBillion Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2013 at 9:46am
thank you ladies!  you are great!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote majjers Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2013 at 2:16pm
HI 11ty,
 
I try to keep up with this thread but don't always post because I don't know what to say sometimes (ok, a lot of the time). But please know that you are in my thoughts and prayers for total recovery.
 
I loved Judy's "Phrase" and think that's a great come back because in my case, it's absolutely true. I don't always want to talk about "my case." 
 
Blessings for bright days ahead,
Traci
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 11tyBillion Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2013 at 8:26pm
i just made a new post on the thread about a trial that I might consider going on at Barnes in St. Louis.  I am really nervous as it required 21 days or not being on a chemo therapy.  this scares me to death!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2013 at 8:42pm
Hi 11tyBillion,
 
What kind of a trial is it?  Does it mean you will not be having any chemo?  Are they going to use something else in its place.  I can understand your being scared, I would too.  Whatever try to keep a positive attitude & put a piece of paper on your refridgerator that says Jesus Heals!!!  My prayers & thoughts are with you.
 
NonnaHug                                   
 
Dx: 3/10 TNBC Stage IIB, Grade 3, 5.1 cm, SN 0/3, M0, Lft mastectomy no reconstruction,
Followed by chemo of Taxotore & Cytoxin and then radiation to whole chest wall'
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 11tyBillion Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2013 at 9:00pm
Oops, sorry for the confusion ... I meant to say that before I can participate in the trial, I need to be off chemo 21 days.  I started navelbine jsut 2 weeks ago (have had 2 treatments).  It scares me to death to think about taking three rounds of a chemo, and then going cold turkey for 21 days before starting the trial.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 4:55pm
I can understand being afraid, though 21 days isn't so long when you consider that with high dose chemo protocols having one infusion every three weeks is typical.    More importantly, do you have a sense of the tempo of your cancer?  Some cancers are slow growing, others fast, others intermediate.   Could you remind us of the timing of your recurrence relative to the primary cancer, and how fast/slow the cancer responded/progressed on various treatments since recurrence?  Maybe we can help you reason through whether the 3 weeks is really likely to be dangerous.
Best,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 4:58pm
I just looked at the beginning of the thread and was reminded that you were three years out before they found anything, and pretty much without symptoms.  Given that your cancer is relatively slow, I would think a 3 week delay shouldn't be a problem.  Have you asked your oncologist for his/her opinion on the delay and its likely impact on you?
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 11tyBillion Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 9:38pm
Thanks guys for your input...I have only had 2 navelbine treatments, one week on break, and then scheduled for a navelbine treatment 4 days before we meet with the folks at Barnes about their trials and their second opinions. We have not been able to discuss any of this yet with my onc. If 21 days will be too long to go with out, but he mentioned the other day that a recent chest x- ray may have shown a small amount of increase. Thing is, almost 3-4 weeks went by between diagnosis ant chemo start, so I wonder if the slight growth occurred during that time. Just freaks me out a bit thinking about going 21 days without treatment. Might just do the 2 more navelbine treatments, then, instead of   The one week break, just take the 3 week break and roll into the trail. I don't know....I will have to wait to see what onc. And Barnes folks say.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 11tyBillion Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2013 at 9:39pm
Good point e wolf, I did not knowt the high dose trials were on three week intervals!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 1:39am
Hi 11tyBillion,
 
I am keeping you in my prayers.  I have never heard of this drug that you are on.  I sure hope it works.  Keep me posted about the trial if you do it.  I am almost to my 3 year anniversary  Moved my mammo up to the beginning of April instead of delaying it for 6 weeks or more as I have to have shoulder surgery and I am hesitent to delay mammograms anymore as I delayed it for 2 years & ended up with cancer.  So I want to check everthing out before the surgery.Hug
 
 
Dx:  3/10 IDC TNBC Stage IIB, Grade 3, SN 0/3, M0 Lft mastectomy 5/10 no reconstruction,
Chemo after of Taxotore & Cytoxin followed by radiation to whole chest wall lft side.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 10:54am
Hi 11tyB,

I don't know about the chemo that you are on, but it doesn't look like anyone who has had it has chimed in. I just wanted to add that the Platinum drugs are thought to be particularly good for TN and that they think the PARPs are going to be good for targeting the BRCA+ women. For you it sounds like possibly a win-win situation!

It sounds like you were able to get an appt in St. Louis relatively fast!! We will all be interested to see what they say! Hope your party went well last weekend.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2013 at 2:18pm
Did your onc say when he expects to see a shrinkage if your tumor is going to respond? It might be worthwhile having a scan to assess progress before you switch to the Barnes trial.  If you are responding to navelbine it might be worthwhile to stay on it. You might want to discuss it with the Barnes docs and get their take on the best plan of action.

NCI has a useful resource for drug information:
http://www.cancer.gov/drugdictionary?CdrID=642976

Navelbine is a microtubule targeting agent, similar to the taxanes but with less neurotoxicity.

I don't think we know much about tumor dormancy, what triggers re-activation and how to infer growth patterns. Modeling cancer growth is still a challenge.


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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2013 at 9:59am
A member has just posted that's been on Navelbine and seen great results.

Originally posted by lotusblossom lotusblossom wrote:

 
I have now been on Navelbine for 18 months and am stable!  The lung nodules are referred to as tiny millimeters and ground glass.  Five sessions of radiation were used on the axilla node, which has shrunk from 2cm to 8mm and the MO thinks it is necrotic tissue, not to worry about.

Click on the link below to read her entire post.
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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