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Loricarol View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2009 at 1:44pm
Dawn
 
Im headed back tomorrow. I didnt remove the longer steri strip at the bottom but the tiny one at top did come off several days ago. How can i know that my port has not flipped and is functional? Did you get Emla cream? Im considering asking that it be removed and a PICC placed. I feel sort of flu like. I was feeling more well before the port placement. Not sure whom to contact because my ONC is out of town this week. But will try to reach someone covering and also see the surgeon.
Weary from the pain will be happy to get answers.
Thanks Dawn
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2009 at 2:25pm
Dear Lori,
 
Some articles for you, and I do hope you can get this out of you.
 
Yes sweetie, many have reported problems with the ports. JanetK from Pittsburgh had one of the newer ports put in and I don't believe has had any problems, but I am telling you that Tai did, and it was not pleasant.
 
From what little I know of the Interventional Radiologist, this is a person trained in threading very fine wires even through the heart, so they are very well educated. I just read what Connie has written so many many times, and trust me, she knows what she's talking about.
 
When you have time take a look at the chemo tips in the News, Resource & Tips forum, as I just copied and pasted 2 of Connie's posts on this subject, as I felt this was very important reading for everyone. The advice given by the women who have "been there...done that", is so vital, as compared to what a doctor tells you, unless they have also had treatments. I would do what these women tell me before I would do what a doctor tells me.Wink
 
This first article did speak to leaving the steri strips in place until they come off by themselves.
 
I am almost certain that the radiologists can take out the port.
 
Gee Lori, Tuesday can't come soon enoughCry
Hugs,
Nancy
 
 
 
 
 


Edited by Nancy - Jun 07 2009 at 2:26pm
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2009 at 3:10pm
Lori,

If you are feeling FLU LIKE, please please get in to see your onc as soon as you get back. Your Onc may be out of town, but someone has to be taking his/her calls.

I so hope you start feeling better soon!!
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2009 at 4:35pm
Nancy

Thank you so much for the articles one is even from Huntsman where i will be getting all my therapy. I will be traveling tomorrow by airplane but will try and make some calls to arrange for a covering ONC or surgeon to check out this port. They look like a great option but they arent as trouble free as was sold to me. 8 days of vacation here to see grandma and the entire time this port has been a concern. I just hope that a decision can and will be made to insert a PICC until they decide what to do with this Port. Personally i want it out.
God Bless
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 07 2009 at 4:38pm
Dawn

Yup i will be calling tomorrow to speak to someone that is covering for my ONC. The port just hurts is a large obvious bulge in my chest and it is scaring me. It has been 9 days now too.
I will keep ya posted
Thanks Dawn
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2009 at 5:13am
Dawn, hopefully the surgeon's office will be able to get you in on Tues. When my port flipped my only way of knowing was that I started to have a fever, the nurses could tell because they couldn't access it and I was send over to get an xray immediately and my onc's office made an appt with the surgeon for a few days later.
 
But again, infection is important to get a handle on.
 
Lesson we all learn early on, and this may be your moment, get all the emergency phone numbers from your doctor so that you can call them 24/7 a week if something like this crops up. Cancer treatments always carry an element of risk and you are always entitled to call your caregivers whenever you perceive a risk - in fact they will encourage you to do so.
 
My 2nd port did bulge and it did hurt and it did mean I had to sleep on my other side. I got used to it and consoled myself that I would get it out the first second I could after treatment, which I did. I'm saying this because they may tell you that the port is ok, and if you still decide to get it out it probably will take several days to schedule the surgery to get it out.
 
Deep breaths and take good care of yourself.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2009 at 1:29pm
You guys are not going to believe this. Today I ran across a woman that mentioned she was having surgery tomorrow. I asked her what type and she said she was having her port o cath taken out. We began to talk and she had the port for chemo ( not breast cancer) ... she was going to a state funded type facility as she was low income and the facility closed down due to the hurricane last year. Needless to say this stopped her last 2 treatments she was to receive. ( which is not the worst thing in the world)....however....this was last Sept. and she informed me today that her port had not been flushed since then....oh wow!! I told her it was supposed to have been flushed every month if not in use. She said due to no insurance etc, she couldn't find anyone to help her, and the few she did get to see stated they would not touch her port ( no experience with them) ....

LADIES.....IF YOUR PORT IS NOT IN USE, PLEASE MAKE SURE YOU ARE HAVING IT FLUSHED MONTHLY !!!!
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2009 at 2:38pm
Every month, have known that since day one but a good message to put out,
thanks
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Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shelly Rae Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 11:58am
What a day!
 I went to get the port today and they started the IV line and took blood to test with no problem. The Blood work came back with the WBC of 0.8 low is 3.7  So I couldn't get the port put in today. I will try again on Fri.. It seems strange I wasn't tested before the day of the appt. I live very close to the clinic. Guess I need to live in a bubble for a few days so I don't get sick LOL. Wouldn't you know it one of my kids had a fever the other day. No kisses for MomCry. Next Chemo. is suppose to be the 15th. I was trying to keep on schedule because my oldest daughter is getting married on the 10th of July. My sister has come to the conclusion that every time they say something is rare or unlikely to happen, it happens to me. We just aren't going there anymore. I don't want to hear about the rare things anymore. Ha Ha!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 5:18pm
Shelly,
 
I read back on all your posts, and I don't see where you are getting either the Neulasta or the Neupogen shot after chemo. They are to boost the blood counts and keep them where they need to be for chemo. If not, that can be the reason for the low WBC's. However, Pam has told us that even with that she still had low WBC's.
 
Lori always had blood work the day before, and I believe that is usually the practice? I may be wrong.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 5:19pm
Shelly
Wow your WBC's were really low. Hope that you can get them up within a few days. Wanted to let you know that my port is finally feeling better. It was painful for about 2 weeks. It does stick out a lot but im really thin so they said on thin people they show more it looks sort of like a large walnut under my skin. I havent felt to well this week myself and im just starting chemo next wednesday the 17th. Im just like you though if some werid side effect will happpen it happens to me.
God Bless you
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 5:42pm
Dear Lori,
 
Well, sounds as though they left the port in? Is it in properly? I have been waiting to hear from you. What made the difference Lori...I mean as to the pain being so bad and now it is ok?
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 6:05pm
Nancy
 
I havent had it officially checked yet. I go tomorrow to have a WBC checked and the port checked to see if its functional. I will keep you posted nancy. Its weird it just slowly started to be less painful. However it does still stick out a lot. And i still feel flu like. But as to the pain it has decreased.
Chemo starts next week. Goodbye hair. Im starting to feel this impending reality. I feel tearful now. Its hitting me all the suden that im reallly going to go through this journey.
How is your Lori doing?
Take Care
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2009 at 6:17pm
Dear Lori,
 
Officially checked is checked!Big%20smile Are you running a fever?
 
Lori's hair didn't fall out until about a day or so before her second treatment, so you still have time, and since it is summer, maybe you can get by with the pretty scarves and doo rags for a while? The wigs really gave Lori a headache. Did you ever get a scarf from the "Good Wishes"?
 
Lori is to have a CAT scan on Monday as there is "a low suspicion of a mass on the adrenal glands". She is a bit anxious, as I know all of you are whenever you have a test. As her mom, I get these...."I can't breathe moments", any time she even has a cough. It will be 2 years in just a few days since her dx.
 
Lori, my Lori is still tearful, and we read of many feeling the same way and for a very long time, and my Lori was very fightened to go through the chemo, but she did and so will you. Just post whenever you are feeling frightened, and these amazing women will get you through this journey. Wink
Many hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shelly Rae Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2009 at 4:26am
Nancy,
I did get a Neulasta shot the day after the 1st chemo. I am not sure why the low count still. We will try again Fri.
People are so kind. I was to paint our house this summer and now can't, so our church has been sending people to help. It has been such a help as we had to get it done and couldn't. God is Good!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2009 at 5:19am
Nancy
 
Oh Nancy i will pray for Lori and ask God that her test revaels something benign. I too have a small "nodule" on my lung but it was there before my breast cancer at leeast 8 months. it is only 4mm in size and after 3 chest CT's with my pulmonologist it has never grown in fact looked like it shrank a bit. So im having faith that it is unrelated.
I will let you know what i find out later today.
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2009 at 12:13pm
Loricarol,
 
I am so pleased to see the port is not hurting you anymore.  I know you had to wait several days to find out anything.
You may be like my daughter, her's always protruded alot more than she preferred.
The good thing is that you will find how much easier this will make life getting infusions and when you are completed with your treatments and the doc feels it is ok you can have it removed.  No needle sticks!
 
I hope your first chemo goes smoothly.  I packed a chemo bag, some take a lap blanket as they may get chilly.  This could be something you could do to stay busy and not think.  Put paper/pen, book, water, snacks, newspaper, whatever you would like in there to fiddle with while sitting in the chair doing nothing.  Usually these take a few hours.
 
If you can take someone with you.  This helps with distraction, you can send them out to bring back lunch or to get you a big iced tea.
 
Ask the nurses any questions you may have, they are in my experience much better with information than the doctors.  Ask for contact numbers should you need them, what to watch for, what to expect, etc..
 
Let us know how it went for you.  You will be fine.  It becomes a routine of sorts.  You will begin to see familiar faces as you go back.
 
Also in the News, Resource & Tips section there is a link on the first page I believe which sends you to a wonderful lady who will send you a beautiful scarf for free.
 
Also you will find many links for headwear websites and what members prefer.  Losing our hair is very traumatic, we women like our hair.
We all understand how that feels.  It is a good idea to be prepared ahead of time with a few things to put on and you can buy more later.
 
One of Nancy's daughter's tips I thought is a good one.  Bed, Bath and Beyond has satin pillow covers for less than $4.00 and they feel so good and cool on a tender head.  Also I really like having a sleeping cap.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Shelly Rae Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2009 at 2:02pm
after not being able to get the port the first time due to 0.8 WBC it was up on Fri to 2.7 so I had the port put in last Fri. and had no problems. I went for may 2nd treatment today and used the port for the first time with no problems.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NINASUZIE Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2009 at 2:28pm
Nancy,
 
I have kept your Lori and you/family in my strongest thoughts for the best outcome of her CT scan....you have been there for soooo many of us.....so many times and know we are right now for you...keep us updated, sweetie!  Sending hugs to all f youHugHug
Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Jun 15 2009 at 3:18pm
Pam
 
Thank you so much! Yes my port is just grand now. I have one day left chemo is at 0830 wed. I go tomorrow to cut my hair into a short pixie it seems easier than watching it fall out. Even cutting it is hard for me. I was less attached to my breast.
Thanks for the ideas about the chemo bag im defintely going to do that and im ALWAYS cold so i will need a blanket. My hubby is coming along this first time so that is good.
Ive got to get the satin pillow case but im all set with head covers thanks to your suggestoions even 2 wigs and a sleep cap too!
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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