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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 1:17pm
Kat,
 
Glad you enjoyed the book I Am Not My Breast Cancer. I was involved in that project. My first online group. The group was started for the purpose of writing the book and to last 3 weeks. It is still going strong.  Many bonds were formed. I found it very cathartic for my emotional well being as it started up 2 years after I finished tx. When the book was finally published several of us met up in New York to meet each other and the author.  2 others from this sight were part of the project as well. I think you may be able to go to the website and read all the postings from which the book was compiled.
 
Good luck with your own project......and wedding.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Rudy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rudy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 1:22pm
does anyone know the best way to deal with fingernails falling off?  they're about 1/2 old and 1/2 new and if i remove the bottom half that is coming off, there will be nothing there.  the edges are up/separated on 2 of them and still attached in the middle.  I used gobs of clear polish to hold them together, but 2 nails are beyond that.  I need someone who has been there/done that to help me figure out how to deal with this.
btw, i had the most horrible expanders for 9 weeks, screaming in pain every second, and I insisted my ps get them the he** out of me and do the implants.  He voiced his concerns but in the end, agreed to do it.  I quit chemo (again) and a week ago I got my silicone 650cc's.  I was only stretched to 550cc's. Hmmm They''re uncomfortable but not painful.  Now I can start chemo for the 3rd time! 
57 yrs/dx 3/24 IDC/Stage 2 Gr3 3.5cm Cl trial (Ad/Tax)neoadj. chemo April. BiMX with exp June. ACx1 July. Implants August. Started chemo again Sept. A/Cx2. Called it quits Oct. Port removed Nov.
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 4:08pm
Hi Rudy,
I am sorry you are having such a difficult time with your fingernails. I did not have a problems with mine to the extent that you describe. I hope someone will be along soon you can help you.

I am trying to put the sequence of your treatments, surgery and reconstruction together. You say you are starting chemo for the 3rd time. Please explain.

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 - 11/2015-9 yrs NED
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Judior View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judior Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 7:07pm
And welcome from me.........Tongue Judy
6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 7:17pm
Rudy,
My nails didn't come off but they got really dark and stayed that way for a long time after chemo was finished.  A few of them felt rather loose, but I never lost them.  I was told to put bandaids on them if they felt loose.  Sorry your expanders were so uncomfortable.   Hope you get finished with chemo soon.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judior Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 7:18pm
Hey Rudy, I had the same problem with my nails when I was on "Taxotere"! Now I am on Taxol with Avastin and my nails are better than they have ever been. So I think it depends on which Chemo you are taking. Perhaps people respond to different chemos in different ways. But in my case it was the Taxotere.~~~Judy
6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Rudy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rudy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 8:11pm
Hi Lillie,
I had a neo-adjuvant clinical trial of Avastin in April....one infusion and it was either way too strong or toxic to me, but I spent the next 8 days in the hospital.  I was dx w/ pancreatitis due to the chemo.
I said forget the clinical trial, and went for the dbl mast w/expanders.  When I was a month out from that, I started A/C....one infusion of that.  Meanwhile, the expanders were killing me and my ps agreed to do the implants early.  He didn't want me to quit chemo, but I was insistent.  7 weeks of torment was too much and they were coming out either by his blade or mine!  So one month after my A/C, I got my implants (last week).  As soon as I'm a month out from THIS, I'll start chemo again (for the 3rd time).   neo-adjuvant/mast/a-c/implants. 
Its been crazy.  Does anyone else out there feel traumatized?  I feel like I've had this horrible traumatic event that is still consuming me.  I am not a ha ha kind of person...I just don't have that humorous bone.  Its not funny anyway.  Its been horrible so far, and not done yet.  I'm scared of everything now.  I guess I need to call my care coordinator...sorry to whine.  Time to go buy bandaids for the disappearing nails~ 
57 yrs/dx 3/24 IDC/Stage 2 Gr3 3.5cm Cl trial (Ad/Tax)neoadj. chemo April. BiMX with exp June. ACx1 July. Implants August. Started chemo again Sept. A/Cx2. Called it quits Oct. Port removed Nov.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2010 at 8:37pm
Rudy,

You've been through so much and I feel your anguish.  I'm glad you were able to get the expanders out and hopefully you'll adjust to the new implants.  You were so miserable with the te and on top of chemo just too much to handle.  I think your skin will adjust to the implants and they'll and be more comfortable in time. 

Never feel bad about venting or whining.  We all need to at some point in time.  If we keep it in it becomes too unbearable.  This disease is terrible and some days are just worse than others.  I'll be thinking of you and hoping the next phase goes better. 

Sorry about your nails.  My fingernails became weird while on chemo (ridges and lines) but I didn't lose them.  Now my big toe nails still hurt and look like they've pulled away from the skin.  I keep thinking they'll get better but so far they haven't.  I'm thinking of going to a podiatrist for advice.  If I put any pressure on the left toenail it hurts so much I want to cry.  Just imagine my young nephew coming up to me to give me a big hug and steps on my bare feet.  Ouch big time!

Hugs,

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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Rudy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rudy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 9:59am
Donna,
thanks for validating that this is a horrible disease.  My daughter (with whom I live with now due to bc) keeps reminding me that 'other people work thru their chemo' and 'why am I being so needy' and 'i shouldn't be shuffling around like I'm 105".   You know the answers to those comments and I've tried to educate her but clearly she is not mature enough to handle mothering her mother and it still hurts.
About your toenail...I hurt my finger once and the nail did the same thing.  It eventually came all the way off and it felt SO much better.  If you can wiggle it off without too much pain, you might find the new nail growing underneath is causing most of the pain.  I don't have pain w/my nails at this point but I'm going to keep them band-aided up as long as I can.
Thanks for the good thoughts and hugs,
Ruth
 
57 yrs/dx 3/24 IDC/Stage 2 Gr3 3.5cm Cl trial (Ad/Tax)neoadj. chemo April. BiMX with exp June. ACx1 July. Implants August. Started chemo again Sept. A/Cx2. Called it quits Oct. Port removed Nov.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 10:53am
Rudy,  I am 6 years younger than you, actually I was 49 when I was dx this time, with TNBC.  The AC chemo had me so sick, that for 9 weeks, I did little and the last 3 weeks of that I did nothing. I couldn't. People told me that they knew people that worked thru chemo, 10 years before  I worked thru the chemo, this time I could not.  I worked as much as I could, i was lucky i worked from home, but most of the time I couldnt do much, and I didn't care what  other people could do, I couldn't do it.  When I was dont with treatment last October.. I was lucky if I could shuffle a walk for 7 minutes, then I had to rest before I could shuffle back another 7 minutes.  Then I had my other breast removed the day before Thanksgiving, and started exercise in January.  Which I was lucky if I could walk a 1/2 mile on the treadmill.  Now, I do 5 minute miles  on level 8 on the bike at the Gym, some days I do 4  ,  5 minute miles, somedays 6 and once in a while 8 miles.   I also do 1200 - 1800 steps on the nu-step and the weight circuit, doing 160 pound leg presses,  96 pound leg curls, and most arm exercises are in the 30-40 pound range.  30 sit-ups as well.   I was never into exercising, and the only   reason I am now, is I hope it is helping me to save my life.   My reason for sharing where I am now, is because I was so low, I couldn't walk to the bathroom without assistance, I couldn't cook for myself, I couldn't......  alot !!!    Don't let folks tell you what you can and can't do.. do what you can, when you can,  and if that means nothing, then that is what it means..  you will come thru this on the other side and be able to do things again... Hang in my friend...  Autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 11:51am
Hi Rudy,

Thank you for the sequence of your TNBC journey so far. I just could not put the pieces of the puzzle together, and now I can. (Bummer). I do pray that you can continue with your treatments and get yourself on the other side of this BC fence.

Tell you daughter that not everyone is able to work during surgeries, chemo and radiation. Mine was a job that (either you could or you couldn't - no half way - and I couldn't) Also, I drug around as though I was 106 years old. I took 6 1/2 months of disability from my job. I went back to work after and even then was not able to perform adequately at the job I left. I was able to transfer into a different department with a much less stressful job. I worked for 2 more years and then retired.

During my last 2 years I worked, I observed 2 employees with breast cancer "work the whole time".... Most of the time "someone was sitting in for them" because they weren't able to work. It sometimes makes those of us who didn't work through treatment look "weak" or "lazy".   This is not always the situation. Some people tolerate things better than others and the type of work you do makes a difference also.

Don't let you daughter bully you around, you are going through enough without having to put up with that.

I have not worked to achieve the level of endurance that Autumn has reached, but you probably can, if you want to. There is life after chemo.

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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 2:24pm
Amen Autumn!Wink
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beach Bound Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 4:18pm
Hi,
Wondering if anyone has an opinion on how important a Pet Scan is? Were the results helpful?  If you had to do it again, would you?   My medical Onc doesn't think I need one.  Due to I had good margins when my tumor was removed and .2mm of the sentinel lumph node had cancer cells, no mass.  The other 16 lymph nodes removed were negative.  I had a double mastectomy with expanders. My radiation onc was looking for results of a Pet Scan and asked me why I didnt have one. He ordered it for me.  I haven't scheduled yet.  I want to get the scan to ease my mind but then read that the scan has as much radiation as 600 chest xrays.  Wow, that's a lot of radiation from one test.
Beach Bound
 
 
dx 12/09, age 45, dbl mast 03/09, 2.5cm tumor, IDC, TNBC, St II, Grade 3, Chemo ACT 6 rds-done, start rad 9/1/10,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judior Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 9:49pm
Dear Beach Bound, A Pet Scan shows cancer in your body. My results were helpful as they were clear. I would do it again. I know that is a big decision with two doctors having different views.
You might check again with the Radiation onc and see if he will give you radiation without one.   
Good Luck, JUDY
6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judior Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2010 at 9:54pm

I need to know if any one has Lymphedema?? I do not get on the pity pot often but this has really has gotton the best of me....Judy

6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rudy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2010 at 3:20pm

Thanks for the additional validations.  I love hearing progress stories!  I'm not going to try and explain to anyone anymore why I can't do this or that.  My daughter is being hard on me because she doesn't want to deal with my emotions.  Ugh! I'll call my c/coord Monday to get more help with that.   I think one major thing on my mind is how hard this has been and if there is a recurrence, I absolutely positively will not be able to handle it. 

The lymphedema had me terrified, but I did not get it.  Please give Judy lots of help and support!  Here comes the rain again...time to close my eyes and try to relax~
57 yrs/dx 3/24 IDC/Stage 2 Gr3 3.5cm Cl trial (Ad/Tax)neoadj. chemo April. BiMX with exp June. ACx1 July. Implants August. Started chemo again Sept. A/Cx2. Called it quits Oct. Port removed Nov.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2010 at 5:40pm
Dear Judy,

I have lymphadema to a very small degree under my armpit and just beyond, toward my back.... Some days it is almost a non-issue and other days it feels like a wad of paper in my armpit. Some days wearing my bra is very, very uncomfortable....

I don't know to what extent you have it, but I do know that people get help with the more involved cases. I hope someone will come along and let you know how they deal with it.

For me, it is a day by day thing, and I try to protect my arm from injuries. I still have the numbish feeling under my arm, down to the elbow. Some days worse than others. Mine has improved slightly over the past couple of years.

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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judior Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2010 at 11:27pm

Rudy, Thank you for asking for surport fpr me. Lillie thanks for responding. My right arm is my life!! I did injure it and that did not help. I think you only get it if you have had nods removed. I have already had therpy where they push the fluid from the bad side to the good. Then they wrap your arm! Now I have a stocking and I do my own therpy  and wrap it at night "sometimes" but its really not good. It might be worse if I stopped. I was a real swimmer but it is a drag in the water.I am going to start swimming again as they said it was a good exercise as water puts as much pressure as a stocking. I am an artist and I keep taking comissions as if I did not have a Problem....Anyway I do not know what else I can do??   If I am ever able to stop chemo/avastin maybe that will help!!    I am becoming addited to this site! I notice I am now a "Groupie"Hug Love, Judy

6 mth call bk, Masecetemy,5.3 tumor,6 pos nods,ace/taxotere,33d rad,stage3 mase to skin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beach Bound Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2010 at 12:09am
Hi Judy,
Thanks for the info.  Yes, the rad onc will give me rad without the Pet  Scan.  So I can think about whether or not to do the scan.  Still not sure about what to do.  All these decisions are tough to make.  It's hard for me to have the confidence that I am making the right decision because I feel like we just don't know what will help and what will not.
Beach Bound
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2010 at 11:10am
CONGRATS KAT!!!  Great to hear your done with your treatments.  Hey enjoy your wedding celebration :)
 
Rudy - everyone's body chemistry is different and we all handle treatment differently.  We may have similar side effects and problems but we're all different.  Just because some of us work and some don't doesn't make any of us stronger or weaker in any way.  My parents and co-workers thought I was crazy to work during treatments.  I'm trying, but if my body could not handle it, I would be home.  It depends on what work you do too and how flexible your boss is.  Your health and recovery are the most important and hopefully your daughter will see that. 
 
Judior - I also have lymphademia, it's really annoying the crap out of me lately!  I was bit by a bug 2 weeks ago and it's still all puffed.  I have to go to therapy for it.  It's my right arm, too.  I play darts (used to be on a league before BC) and my arm is puffy and hurts and I'm not too happy about it.  I do sleep with it elevated on a pillow and that does help.  Good luck with yours.
 
I had my 4th treatment on Wednesday, still feel pretty crappy.  I do feel a bit worse with each treatment.  Two more to go!  My big toes are all tingley.  I feel a little congested but no sign of a fever.  Can't seem to hold my pee for long, I hate going to the bathroom so often :(   
 
Before I started treatment I had a muga scan done to check my heart, should I have one done at some point during treatment to see if there is damage to my heart from the treatment?  I think it would be pointless to check after treatment is done, since it would be a bit late then. 
 
Hope that everyone had a good weekend.  Talk soon.
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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