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Martha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 5:00pm
Hi Kathy. I have lower back pain. It started with my first chemo regimen (TAC) in 2008, and it continues now. It's not everyday, but usually once or twice a week. They've MRI'd, CT'd, etc. and say I have arthritis.....so started me on celebrex. I also have vicodin for break thru pain. I don't understand how it can be arthritis - and only a coincidence that the pain started with my first chemo regimen. I know I'm not a doctor, but I think the chemo is causing the pain. I'm 53, and spent 20 years in the Army. I retired in 1999....so I consider myself to be in pretty good shape. I try to walk for 30 minutes everyday, but some days my back pain prevents me from doing any activity. I keep telling my oncologist, but he doesn't think there is any connection. What does your doctor say about your back pain? Hope you feel better soon.
Warm Regards,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 5:04pm
Thanks to all for your well wishes. I will keep you posted when I get scan results in April. This rest week started off a bit rough, but today I feel pretty good (Wednesday). This is so wonderful. I am so thankful to have discovered this site.
I look forward to hearing from you all.
Warm Hugs,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 8:53pm
Hey Martha,
I read your post about the back pain.  I had the same thing.  I know I have arthritis in my back, but it is much worse now than before chemo.  I asked my onc and she said it was rebound from the steroids.  Of course, she blames almost everything I complain about on steroids.  She said that if you have something going on, the steroids first make it feel better and then when you crash from them, your usual ache, like the back pain, is worse than it orginially was.  Her words, "it should get better with time".
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Martha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 9:17pm
Thanks Nita.  It's good to know it's not just my imagination. Has anyone been given any of the bone strengthening meds like actonel, boniva, etc....to help prevent bone mets? I've heard there may be a clinical trial to see if taking these really help prevent bone mets. I haven't found it yet on clinical trials.gov.....but wondered if anyone was already taking these types of meds, or if anyone has heard of the trial.  Hope everyone has had a good Wednesday.
Warm Hugs,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2011 at 10:18pm
Martha,

After I finished treatment in 09, I entered a clinical trial for bisphosponates.  I had to leave the trial when I was dx with a recurrence in October.  There are several women on this forum that are participating in the trial or taking them outside of the trial, eg. Zometa infusions.  Here's the link to the thread:

http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591_page1.html?KW=bisphosphonate

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 12:56am
Martha,

Here are a couple more threads to read.  The first one is a new drug called Xgeva (denosumab):

http://forum.tnbcfoundation.org/xgeva-new-denosumab-drug_topic7513.html?KW=Xgeva

The other thread is on Zometa:

http://forum.tnbcfoundation.org/zometa-news-important_topic7575.html?KW=prolia






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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Martha View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 3:48pm
Thanks for the additional information Donna. Very helpful.  I meet with my onc on 12 April. I will ask him about it and see what he thinks. Are you still on the gem/carb + iniparib trial? I start cycle 3 on Monday, 4 April. Hope you continue to be NED! You Go Girl!
Warm Hugs,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 3:54pm
Martha,

This is my last week of Cycle 5.  Actually I didn't get chemo on Tuesday because my WBC and ANC were too low and my liver enzymes too high.  I am getting the Iniparib and Friday will be my last day!  Hoping to be NED forever!  Then onto radiation.

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 3:56pm
Martha,

Wishing you success with this treatment too.  Please keep us posted on how you're doing.

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 Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 4:24pm
Thanks Donna. The primary investigator of the trial I'm on (expanded access) said I should keep receiving the chemo and iniparib for as long as my body will tolerate it, so no specified number of treatment cycles. Scans are to be done after every 3 cycles...which is mid April for me (first scan since starting the trial). My Feb scan showed 1 tumor in my right pectoral muscle and 3 nodes - two in my chest area and one near my liver. Lungs and liver are still "clear". This is my 3rd recurrence.....all previously in the original site, right breast. I have lymphodema pretty bad in my right arm now. My original surgery was back in Nov 08 - complete right mastectomy with right axially dissection (1 / 10 nodes positive). I am just praying to be able to tolerate the chemo long enough to get me NED longer than 7 months. Each prior chemo has only given me 7 months of NED. I had radiation following the first chemo, but the first recurrence was on the mastectomy suture line. They did radiate the suture line - but only 3 days. The other targeted areas were my chest wall and drainage tube scars. Even with radiation - the disease came back exactly 7 months from when I stopped chemo. The first recurrence was surgically removed - to inlcude a skin graft from my thigh....so I have no breast tissue on my right side....just skin from my thigh. I did 5 cycles of xeloda + (I can't remember the name). Again, 7months NED...  And now, this damn disease came back in my right pectoral muscle (what's left of it). It seems the radiation did nothing to prevent recurrence. Sorry for rambling....I guess today I needed to vent! Thanks for letting me do this!
Warm Hugs,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 5:50pm

Martha - feel free to vent all that you need to!  This is the perfect place - I believe everyone here understands.  Seems like this disease is relentless and the fight just takes it out of us sometimes and/or makes us hoppin' mad!  Hope this chemo gets you to NED quickly and you stay there way for a very long time.

Fondly,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 5:56pm
Martha,

This is the right place to vent because we get it.  This disease is hideous and seems to outsmart the best docs and chemo.  I think you'll find good luck with this chemo combo.  The biggest side effect I had was fatigue and low WBC/ANC. 

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Martha Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2011 at 11:42pm
Thanks Laura and Donna.  I really appreciate your support.  Donna, did you say you are still working while on this chemo regimen?  I don't know how you do that......the fatigue is so bad, I spend several days sleeping all day. Only getting up to eat a bite so I can take my other meds. It would be great to meet face to face someday. I have chosen not to have reconstruction....and so glad I made that decision. I would not have found the recurrence nodule if I had the reconstruction. My husband says he doesn't feel I need to have reconstruction. He is so loving and supportive. The problem is.....I have a constant reminder, everyday when I look in a mirror. That makes it tough some days. With the skin graft, I don't know if reconstruction is even possible now. I am suppose to meet with the plastic surgeon sometime over the next 6 months. I'm not convinced I even want to have reconstruction. With this carbo/gem chemo, I haven't lost my hair yet. That's one really positive so far. I missed my hair alot more than I miss my boobs. That's for sure. I've been able to go without hats and/or scarfs since Christmas, 2010. I started this regimen 21 Feb 11. It's nice to still have hair. Donna, after 5 treatments, did you lose your hair? I'll start cycle 3 next Monday. It's good to "talk" with you all. Thanks for all your support and encouragement.
Warm Hugs,
Martha
I have a silly question. How do you all show your "vital stats" at the bottom of your messages? Is that considered your signature on your profile?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2011 at 12:38am
Martha,

I'm just completing 5 cycles and I worked through treatment.  It wasn't easy.  If I had to continue treatment I don't think I could continue working at the same level as I did.  I'd either have to work from home or take some time off.  What type of scan are you getting?  I had a breast/chest wall MRI.

Where was your recurrence nodule?  Mine was in an internal mammary node and I couldn't feel it as it was under the rib cage.  I had reconstruction and I'm OK with it.  I think I'd be perfectly fine if I didn't have reconstruction either.  If someone told me that the implants should be removed to better my chances, I'd do it in a minute. 

I didn't lose my hair with this chemo.  I noticed a little more hair loss than usual, but my hair was pretty thick before so it's not too obvious.  I guess this is one good positive. 

To get your stats so that it show up at the bottom of your posts like mine, just go to the upper left side of the screen and click on Member Control Panel, then Edit Profile.  Scroll down until you see Signature.  Type your information in the box as you'd want it to appear in your posts, scroll down and save/update your changes.

To get your picture in your Avatar, go to Member Control Panel, then Edit Profile.  Scroll down until you see Select Avatar.  You'll see a link to Upload Avatar.  Click on it and find the picture you want to use that you've stored on your computer.

The TNBCF website limits the size of the avatar.  I took a digital photo I had stored on my computer and used the website below to resize it to meet the correct dimensions.  Once I did that, I saved the new image under a different name and then I was able to upload it.

I used this link to resize the picture and create an Avatar:

http://www.shrinkpictures.com/create-avatar/

Let me know if you have any problems with your signature or creating an avatar.

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 Martha Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2011 at 10:38am
Donna - I'm having a PET scan - from "eyes to thighs". I've been having PET scans done, so they want the same to compare for the clinical trial. This recurrence was not able to be felt, but the previous 2 recurrences I discovered myself. The first was a hard knot like on the mastectomy suture line. The second was 3 months later, just below the skin graft. Again, a hard knot like - but this one was very small. When they biopsied, it removed almost all of it. It was only 3 months following my skin graft surgery, so instead of more surgery, they started me on the chemo to fight it systemically. I remembered the name of the other agent - Ixempra + Xeloda was my second chemo regimen. I hate when I can't remember things. I guess I have "chemo brain" sometimes. If you don't mind me asking, what kind of work do you do?
Thanks so much Donna.Smile
Warm Hugs,
Martha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 01 2011 at 12:23pm
Martha,

I don't mind you asking.  I'm a co-owner of a small business.  We have 6 people working for us - all women.  For the most part, I sit at a desk and work on the computer.

My onc told me that I'll probably get another PET scan this summer after I finish radiation.  The PET scan gave us the first indication of the recurrence.  We monitored the chemo effectiveness through a breast MRI.  Yes, chemo brain is real!  I want to blame it on getting older, but I think chemo has a bigger effect on us.

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 trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2011 at 12:26am
Hi Martha, my very best wishes that your treatments go smoothly as possible.
 
I just received my latest Spring issue of Cure Today Magazine, it is free and they have a article on Chemo Brain,
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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