Newbie & IV question
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Topic: Newbie & IV question
Posted By: Shelly Rae
Subject: Newbie & IV question
Date Posted: Jun 02 2009 at 5:51am
| HI, I have been hanging around the board but haven't posted. I had a mastectomy on 4/8 tumor was 6.8, x 6.5, x 5.0 (I know huge, I have dense breasts that started to soften with age) the time of the operation the sentinel node showed clear. When they tested it later it was positive for micro mats. Adriamycin week later I had 24 nodes out and they were all clear. Stage 3A, Grade 3, Triple Neg. I had my first chemo. yesterday. The first meds went through the IV fine some pain from one. Than the started the push of the Adriamycin and my arm hurt and started to turn red and hives appeared on the red part. This was after only 3cc of course they stopped right away. They called it flashing. My question is has anyone heard of this? They said they had seen it one or two other times, but not with hives. They started another IV lower in a new site and I had no problems. |
Replies:
Posted By: trip2
Date Posted: Jun 02 2009 at 10:55am
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Hi Shelly Rae and welcome to our forum.
I am so sorry you had this problem with your infusion.
So you did not have a port installed?
I myself have not had this experience but it does sound similar to a problem a couple of members have had, hopefully they will see your post. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: mainsailset
Date Posted: Jun 02 2009 at 5:36pm
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Hello Shelly Rae - It's been my understanding that Andriamycin is always given through a port, not an IV because it is particularly hard on the veins and I know it was one of the main reasons I had a port put in. Hope Im misunderstanding you.
When I had the taxol I had some hives which went away fairly quickly but I know the nurses watched me like a hawk in case it was indicative of any breathing issues.
That must have been pretty unnerving to go through. Btw, my tumor was also quite large, actually 2x the size of yours and the AC as well as the taxol did a great job on it. So good luck with it, but please be sure that it's ok to use an IV, you have me worried.
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Posted By: SagePatientAdvocates
Date Posted: Jun 02 2009 at 8:18pm
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Dear Shelly Rae,
were you advised to see a Certified Genetic Counselor for counseling/possible testing for BRCA mutation? re: lymphedema http://www.mayoclinic.com/health/lymphedema/ds00609/dsection=causes http://www.aol.com.au/lifestyle/story/Trying-to-prevent-lymphedema-after-breast-cancer/1493621/index.html good luck to you.. all the best, 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 |
Posted By: Nancy
Date Posted: Jun 03 2009 at 8:32am
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mainy,
Lori did not have a port or PICC line, and she did have the "A" 6 times. Her veins are not good at all now, so Shelley if you can, it might be in your best interest and health to ask your onc if you can get one or the other. When Lori has blood work they have to use a pediatric needle in her hand. Pretty difficult. Of course they can only draw from the right side...mastectomy was the left.
With the "A"" you can blow the veins, and the A can actually burn your arm, if the person infusing does not have the experience. Check on the port or PICC line Shelley.
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 |
Posted By: Nancy
Date Posted: Jun 03 2009 at 8:34am
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Steve,
Your links.
 Nancy
re: lymphedema http://www.mayoclinic.com/health/lymphedema/ds00609/dsection=causes - http://www.mayoclinic.com/health/lymphedema/ds00609/dsection=causes http://www.aol.com.au/lifestyle/story/Trying-to-prevent-lymphedema-after-breast-cancer/1493621/index.html - http://www.aol.com.au/lifestyle/story/Trying-to-prevent-lymphedema-after-breast-cancer/1493621/index.html ------------- 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 |
Posted By: SagePatientAdvocates
Date Posted: Jun 03 2009 at 8:55am
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thank you Nancy
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 |
Posted By: trip2
Date Posted: Jun 03 2009 at 9:02am
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Steve,
Thank you for the great links. We have discussed lymphedema a bit here in the forum but probably have not given it the attention it needs.
This can be a very serious, painful condition.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Loricarol
Date Posted: Jun 04 2009 at 6:00am
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Shelly
Ask for and demand a port a cath. I just got mine. These drugs that we get through our chemo are very toxic and can danage the skin and tissues in your arm. A port a cath is a simple same day surgery procedure and all your chemo will then go through that into a large central vein also all your blood draws etc.
Just wanted you to know there is another way.
God Bless you
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. |
Posted By: Shelly Rae
Date Posted: Jun 04 2009 at 6:14am
| Thank you Lori. I am going to call the Dr. today about a port. I have some black and blue marks at both needle sites from Mon. It isn't something I couldn't deal with, but why if there is another way. With this having been the 1st treatment what might the rest do to my veins? I have been doing very well. I am not sick. Only thing is my throat is feeling raw just a tad. bit. It makes me wonder if the Chemo. is doing the trick because I feel so good. I think it has become a new thing for me to 2nd guess every little thing. Take care |
Posted By: Loricarol
Date Posted: Jun 04 2009 at 6:22am
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Shelly
Good fpr you! call you MD ASAP and tell hiom I WANT A PORT. Tell him the trouble that you had and that YOU KNOW that Adriamycin is toxic should it leak into the layers of your skin. Put him on notice that your aware of the risks and he will be sure to get a port ordered. It may slow your chemo by 1 week but thats all. And yes by the time your done using peripheral veins for chemo they are all often sclerosed (hard) and ruined.
I start chemo June 17th. lets keep in touch. I want to know how your doing! Im getting ACx4 (dose dense) folllowed by Taxolx12 weekly.
God Bless and i will be praying for you Shelly Rae  ------------- 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. |
Posted By: mainsailset
Date Posted: Jun 04 2009 at 7:17am
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Nancy, and all
My surgeon, who has been absolutely great for being straight up, told me that the idea that you can't take blood pressure off the side of a masectomy goes back to the old surgery where they really hacked on you and is not applicable today. He said he has gone rounds and rounds with nurses who are still taught in school not to take BP off m side.
I'm seeing him tomorrow and will ask if taking blood off masc. side is the same situation.
When we all first start our personal journey we don't have the benefit of as much information as we probably need and it's one more reason why as much as I hate the ports I'm a firm believer that they are a viable way to get safe infusions and particularly when I hear of how veins collapse during chemo.
It's important for all of us to look at this treatment in the long run, keep our veins as healthy as possible for after care as well as first infusions.
Anyway, I'll ask surgeon about taking blood on the masc. side.
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Posted By: trip2
Date Posted: Jun 04 2009 at 2:29pm
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Shelly Rae,
Maybe a popsicle or some ice cream might feel good on your throat. Just a thought.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Jun 04 2009 at 4:23pm
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Mainy,
I am not sure why Lori does not have the draws on the side, but I believe her surgeon told her not to, and she is a nurse and that was always taught?. However, I did find 2 articles about this. There are more but 2 is enough.
Hugs,
Nancy
http://www.phlebotomy.com/pt_stat/stat0407.html - http://www.phlebotomy.com/pt_stat/stat0407.html
http://hadawayassociates.blogspot.com/2007/05/venipuncture-after-mastectomy.html - http://hadawayassociates.blogspot.com/2007/05/venipuncture-after-mastectomy.html ------------- 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 |
Posted By: cg---
Date Posted: Jun 04 2009 at 5:27pm
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Dear All,
Why wait for a port placement and healing time to access it and suffer each time you use it....get an interventional radiologist to put in a PICC line under fluoroscopic guidance and use your PICC line right away.
Why take chances with infection - potential infection and cellulitis just to have blood work, needle pricks, blood pressures taken on a side that has had axillary dissection?
If Adriamycin is 'pushed' too quickly - rather than being introduced slowwly that can happen. Adriamycin can cause the sensation of congestion in the sinuses and face...for some unknown reason sucking on ice chips helps with keeping mouth sores and sore throats to a minimum. The important thing to remember is to flush the fluids and always empty your bladder before you leave the chemotherapy unit so you do not have the toxins sitting in your bladder for the ride home.
I always marveled how everyone got comfortable, read a book, watched TV, slept..I sat bolt upright in the chair with my feet planted firmly on the ground. I scanned the room like a surveillance camera making sure every nurse was adhering to 'sterile precautions' - made sure I read all the labels on the bags to make sure they were mine... Yup - I could have been an operative for Homeland Security documenting the activity of person or persons with the poison!
Gee, the memory of childbirth everyone said will fade....I remember every moment. I even read name tags, and asked what nursing school they graduated from and whether they had taken any upgrading courses.
Love,
Connie
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Posted By: dmayes
Date Posted: Jun 04 2009 at 6:38pm
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Connie - I can so relate.
My first infusion the nurse told me to make sure they sterilised their hands between patients, check what they are giving you, make sure that if you are not sure of anyting ask questions. I always watched the nurse as she came to me with the next bag - and she actually told me "Deb this is..." - she did use the anti-bacterial foam stuff on the wall - she check my name against the bag, and asked how I was feeling, do I need more water..." Glad I decided to head out of town for all my chemo - they are very good.
I was also impressed that they came and chatted to me - as I was by myself for dose 2 - she was interested in Australia and asked lots about it. I have a daily calendar of pics from home and use my favs as bookmarks - I signed the one I had with me and left it with her - she stuck it by her desk!! I told her I'd pick out a few and give them to her on my next visit. The friends you make on this journey!
Hugs and good night all - Debs ------------- Debs | Laugh every day, Love every minute. Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA - Cytoxin/Taxotere x4 end Jul09. ReCon surgery March10. |
Posted By: cg---
Date Posted: Jun 04 2009 at 6:52pm
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You know Debs...you are in good hands at that place and I am delighted. You think you are alone but you have us with you every time you go for treatments. It must get very crowded in you onc's office with all of our questions, and we are there in spirit.
Love,
Connie
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Posted By: Loricarol
Date Posted: Jun 05 2009 at 4:33am
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Connie I was unaware (not told) that thee would be pain each time my port was accessed? I did have the port placed 1 week ago and i will admit it isnt very comfortable where they have placed it. It is hard to lie on my right side. I was never offered a PICC line. Im an RN and just figured when they said port a cath that it must be the newest thing available for venous access with the least amount of side effects or risks because it is not open to the surface of th skin. But as for pain where it is implanted it seems abnormally painful. I am out of town now and definetly plan to ask my surgeon as soon as i get home why in the heck! this thing pains me so much where it is implanted. 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. |
Posted By: dmayes
Date Posted: Jun 05 2009 at 4:35am
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Thanks Connie - it is comforting knowing you are here for me.
And right now - I dont even have one question for him on my list - might have to take my onc some cake instead!
Love Debs ------------- Debs | Laugh every day, Love every minute. Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA - Cytoxin/Taxotere x4 end Jul09. ReCon surgery March10. |
Posted By: musette green
Date Posted: Jun 05 2009 at 10:32am
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Loricarol, Maybe this will help you. The next time you see or talk with your oncologist you might ask for Emla Cream. It is a Lidocaine and Prilocaine mixture that you apply to your port site 1 hour before it is accessed. I am a big coward, hate needles even though I work with them daily. The Emla worked great for me-- barely felt the needle enter the port. Plus I got the bonus of having a finger numb, so it made the fingerstick lab draws easier to tolerate!  Lisa ------------- DX 10/08. IIB,gr 3, 2.5cm. TNBC, BRAC1&2-, nodes+(left axillary, supraclavicular, ant. mediastinal & IM). Neoadjuv. chemo 4x C/T. Left mast.3/09,completed 40 rads 9/09. Reconstruction pending. |
Posted By: Loricarol
Date Posted: Jun 05 2009 at 1:36pm
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Lisa Wow thank you so much! I had heard about that cream but i thought that the infusion nurses gave it the day you came in for the infusion. But it makes sense that i should get the script first and be ready for them when they come at me with the needle for the first poke!
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. |
Posted By: Sunris
Date Posted: Jun 05 2009 at 8:20pm
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Loricarol,
I agree with the Emla cream. I use it also and it is FANTASTIC..... just rub it on / around your port 1 hour prior to chemo and you won't feel the stick. I can't even imagine them not having automatically given you the Emla cream to start with.... I too was still sore from the placement of the port a week later, but it has been 6 weeks now and I can sleep on my right side ( have been for at least 4 weeks now) very comfortably. It stays sore for a couple of weeks then gets better. -------------  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. |
Posted By: Loricarol
Date Posted: Jun 06 2009 at 3:25am
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Dawn
I plan to get the emla cream as soon as i get back home. I came out to Tennesssee to see my grandma before beginning chemo she is very elderly.
Great news that after 2 weeeks its started to get better. Because dawn this thing is KILLING me. I cannot sleep on my right side at all. And it feels like ive got a small yoyo with a plastic tube attached to it placed in my chest just under my skin.
Thanks for sharing that because i wasnt sure i could take 5 months of this.
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. |
Posted By: mainsailset
Date Posted: Jun 06 2009 at 9:18am
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Lori, if you are experiencing pain lying on your side, do report this to the onc and tell the nurses as well. My first port 'flipped' and I had to go back to surgery to have it replaced. And with the 2nd one, it began to work its way loose also and eventually there was only one nurse who could access it. Ports are not perfect, when mine worked its way loose it caused an infection which to put it mildly is serious.
As to the emla cream it's a Godsend when it works, I'm allergic and can't have the Lydocaine so had to put up with the needle inserting pain. The nurses hated that they had to hurt me and I quickly learned that the nurse who made one quick jab was my friend vs the more timid poking technique. I really felt sorry for the nurses though.
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Posted By: Loricarol
Date Posted: Jun 06 2009 at 9:56am
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mainsailset
Hi thank you for that very important information. It feels abnormal. It feels like a large walnut sticking out of me. And lying on my side is very painful. Im just a little over 1 week post op. I have an appt with the surgeon who placed the port this week my ONC is out of town. I would assume he can tell me if mine has "flipped". I have been out of town so couldnt get anyone to look at it in the last week. My concern too is IF it needs a replacement can they quickly do a PICC or something? Because i have NO VEINS and must start my chemo 6/17 even at that it puts me 6 weeks post op mastectomy. Appreciate your help! This site is a God Send ------------- 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. |
Posted By: mainsailset
Date Posted: Jun 06 2009 at 10:26am
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Lori, take your temperature routinely as well as your BP, keep them in a diary. Beyond the most obvious reason, when you are taking chemo the doctors seem to like to see a pattern of change - say 3 days of something abnormal - and if you're like me, I generally have problems Fri nite, so if I can call in with a history it makes it easier for the on call doctor to help out if something crops up.
I remember mine felt like some strange lump trying to jump out of me and yes it hurt, even when things were ok, and I learned to sleep on my other side with my arm draped backwards across my back. Sigh, what we do to accomodate these things.
I doubt yours has flipped this quickly, and even if it has the surgeon was able to get me in and out in a matter of a couple of days with a new one. I would assume the PICC would be a similar if not faster procedure. Big thing is to make sure you are healthy.
I'm now 4 weeks post mastectomy, waiting to heal to start rads and I completely understand your determination to get your chemo started, it often seems every moment we live without the protection of chemo or rads, we succomb to cancer. But 6 weeks is ok, in fact it's healthy.
In my case, the chemo once it was started was not only able to stop the insane growth of my tumor dead in its tracks but it then started the amazing process of shrinking it. It was an amazing progress and I truly wish the same for you!
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Posted By: Loricarol
Date Posted: Jun 06 2009 at 11:05am
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Mainsailset I will start a journal with my B/P and temperature as soon as i get home Monday. Things also seem to hit me when its a friday or (im out of town) LOL. Mine does feel odd narrower at the part i can feel and wider at the portion that lies against my chest wall. But overall sticks out quite alot. And yes extremely painful. I see from your experience that ports can be painful even when not flipped. I wander why they recommend these rather than PICC lines? It seemed like that was their recommendation so i figured the "latest" thing. I too am 4 weeks post mastectomy 5/5. My mastectomy feels pretty good. Just some swelling under my arm. Gotten used to wearing fake boob in one side. LOL Will you have more chemo as well as the RADS? They told me no RADS because my tumors were 1cm and 2cm with clean margins and no nodes. I hope that they are right. It is so hard to place our lives in the hands of these md's. they all have different opinions and treatments. I guess i can do what i can do and then leave the rest to God. Thanks Your advice and support are apppreciated 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. |
Posted By: cg---
Date Posted: Jun 06 2009 at 11:40am
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Dear Loricarol,
I was ordered a port - it was not discussed with me BUT when I was told to report the morning to have the port installed by the INTERVENTIONAL RADIOLOGIST - I asked her why I was not offered a PICC line since I was only having chemotherapy for 4 months. It is put in under fluoroscopy in minutes and everyone knows how to use them in hospital setting - whereas very few know how to access ports in a hospital setting. The port is painful to use unless the "needler" is good at 'accessing ports'.
I just had the PICC line threaded in on my right bicep - absolutely no pain ever. I kept the attachment covered with sterile Mepilex 4 x 4 and an arm band. I had it pulled out by the chemotherapy nurse in seconds after my last chemotherapy was over. No fuss, no muss, no bother.
I have two tiny little scars on my bicep that are smaller than some of my leg shaving scars.
This is just my experience but blood work was effortless, and chemotherapy was without incident. I never felt pain or anything else and I am pretty thin.
Connie
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Posted By: Loricarol
Date Posted: Jun 06 2009 at 1:09pm
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Connie
I think that i want a PICC now. A surgeon did mine so i wasnt ever told about a PICC maybe they dont do those like Interventional Radiologists do. I have to wait another 4 days to have the surgeon check this port and it is hurting me so much. But because its already installed (unless its faulty) i doubt they will take it out and give me the PICC. But can i persist and request that due to pain they install a PICC and remove this PORT? They are just awful as far as from what im seeing so far. Wish me luck im going to try and get a PICC. Thank you for replying it really helps. 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. |
Posted By: trip2
Date Posted: Jun 06 2009 at 2:00pm
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Loricarol,
I am really sorry to read you are having this pain with your port.
I have had two, still wearing the one I had put in two years ago and just keep it flushed and it is no bother, neither of them have been.
I know things can happen, people have problems, everything isn't for everyone but this has been the handiest thing since I have been in and out of the hospital and they have used it so much.
I hope you get this all straightened out soon and please let us know what happened with your port, would you? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Loricarol
Date Posted: Jun 06 2009 at 2:34pm
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Pam
Thanks for replying. I have had it for 10 days and because am out of town i cannot get any answers as to why it is hurting me so badly till this wednesday. But i would like to ask you does yours stick out like a large walnut? I can feel all the way around it and it aches and hurts constantly. I thought it would be flat against my skin. sounds like your ports have been great so possibly there is a problem with mine. The ONC is out of town so im hoping the surgeon can take care of the problem. I have to get something functional and not so painful by 6/17 for my first round of chemo. God Bless I will let you know what they find out. But i just cannot imagine the pain of this for 5 months of chemo.Its worse than the post op mastectomy pian. 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. |
Posted By: Loricarol
Date Posted: Jun 06 2009 at 2:38pm
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Pam
Thank you for replying. My port was put in 10 days ago. I went out of town just after the surgery so cant have it assesed till i get back on Wednesday. It is large like a walnut protruding from my chest. It hurts and aches worse than my mastectomy did. Were your ports that large did they protrude out from your chest that far? I will let you know what i find out. Hopefully they fix it or get me another access soon for chemo on 6/17. 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. |
Posted By: trip2
Date Posted: Jun 06 2009 at 2:42pm
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Loricarol,
It is a shame you cannot get in to have someone check you, wasn't it the surgeon who put it in? Is it red along with the tenderness?
Mind sits flattish beneath the skin about the shape of a quarter and maybe the thickness of a bottlecap.
Is it just sore when you try to lay on it or does it hurt all of the time? Would an icepak help any?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Loricarol
Date Posted: Jun 06 2009 at 2:51pm
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Pam
It hurts and aches all the time. It is nothing like a quarter or a bottle cap. More like a round walnut that i can hold in my hand from the outside of my body id say it protrudes about 1/2 inch from body. I am seeing the surgeon Wednesday. at this time Im out of state came to visit my grandma prior to chemo so no access to my Docs till i return to Utah. I havent noticed redness just soreness and its large size felt from the outside. I will make it till wednesday but dont want to suffer with it during chemo. Glad that your s worked out very well. Maybe mine is flipped or something? 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. |
Posted By: trip2
Date Posted: Jun 06 2009 at 4:39pm
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It almost sounds like yours has turned on you??
My daughter said her port always stuck out more than she preferred so had it removed immediately after treatment but no soreness like you.
I feel bad for you that you have to wait so long, you might call Monday morning and explain to the nurse, maybe she has an opening??
Matter of fact I would call and ask to be seen Monday because of the pain. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Jun 06 2009 at 5:09pm
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Dear Lori, Do what Connie has suggested, and don't just ask....DEMAND that an INTERVENTIONAL RADIOLOGIST take out this port and give you a PICC line. You can indeed tell them to get it out of you. You should not be having the pain that you are having. This is your body...your life!!
Why these surgeons feel they are qualified to put in ports is beyond comprehension. My friend Tai had a horrible time with hers, as it was wayyyyy too deep and was put in sideways. Yeah that guy really knew what he was doing! NOT!!!
They put in the ports because they get more money. Plain and simple! Gee who would have thought that? Connie has written this many many times, and it is even in our chemo tips, and in fact an entire post from Connie in the tips.
Now sweetie, on Monday, we will wait to hear from you, and no matter what they say, you tell them what you want!!
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 |
Posted By: Loricarol
Date Posted: Jun 06 2009 at 5:10pm
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Pam
I will be in flight all day Monday from Tennesssee back to Utah but i do plan to call his nurse first thing Tuesday to see if they cant get someone to look at me that day i have to be at the hospital anyways for an ECHO. Yeah it feels like it has turned o me. I guess an Xray would confirm that. 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. |
Posted By: mainsailset
Date Posted: Jun 06 2009 at 5:25pm
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Lori - I would suggest you calling the doctor's/surgeon's emergency line and getting the on call doctor to call you now. You may be surprised at the solutions they may offer you....they may have someone in TN that can get you in tomorrow...if not, they need to take care of making an appt for you to get an xray, no point in getting to the office and then having to wait another day for an opening. Appts can be cancelled, believe me.
If you have a temperature they can prescribe an anti biotic tonight to get you started because if you have an infection by the time you get home they may decline the surgery to replace the port until it is controlled and I can tell you don't want to waste time. They came close to declining my surgery so infection is not something to mess with.
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Posted By: Loricarol
Date Posted: Jun 07 2009 at 3:16am
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Nancy
Hi friend i will be taking your advice and calling my surgeon Tuesday as soon as im back from Tennessee where im at now. I dont think surgeons do PICCS but we (my husband and i) are planning to tell him GET IT OT ITS KILLING ME!!! And then to arrange for PICC placement ASAP as i only have that week to get one put in. I guess the Interventional Rad could take out this port and put in a PICC right? So perhaps i will just call the ONC and ask for this to be done and by pass the surgeon. Whatever he did its awful and i have suffered 10 days here with it because of being out of town. So from what you indicate other's have had the same issues with surgeons and ports. Thanks Nancy I will keep you posted on this 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. |
Posted By: Sunris
Date Posted: Jun 07 2009 at 1:33pm
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Loricarol,
You didn't take off the steri-strips did you? You are supposed to leave them on until they fall off on their own. Mine took every bit of 3 -4 weeks to fall off. They would get loose at the edges from getting wet after showering, but didn't actually come off until nearly 4 weeks. I will admit that mine was very sore for a couple of weeks, to the point that they were having to access it with a longer needle than expected due to the fact their was still some swelling into the 2nd week. I wouldn't say mine is protruding as if it were a walnut, but it is very raised .... I hope you get some relief SOON sweetie.... ------------- 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. |
Posted By: Loricarol
Date Posted: Jun 07 2009 at 1:44pm
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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. |
Posted By: Nancy
Date Posted: Jun 07 2009 at 2:25pm
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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.
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 enough
 Hugs,
Nancy
http://74.125.47.132/search?q=cache:fXU_MFIvgZIJ:www.huntsmancancer.org/groups/myeloma/patient%2520education%2520binder/centralLines.pdf+interventional+radiologist+placing+ports&cd=7&hl=en&ct=clnk&gl=us - http://74.125.47.132/search?q=cache:fXU_MFIvgZIJ:www.huntsmancancer.org/groups/myeloma/patient%2520education%2520binder/centralLines.pdf+interventional+radiologist+placing+ports&cd=7&hl=en&ct=clnk&gl=us
http://www.chemocare.com/whatis/how_is_chemotherapy_given.asp - http://www.chemocare.com/whatis/how_is_chemotherapy_given.asp
http://www.st.alexius.org/centers/imaging/interventional-radiology/picc-line-insertion/default.asp?ID=289 - http://www.st.alexius.org/centers/imaging/interventional-radiology/picc-line-insertion/default.asp?ID=289 ------------- 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 |
Posted By: Sunris
Date Posted: Jun 07 2009 at 3:10pm
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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. |
Posted By: Loricarol
Date Posted: Jun 07 2009 at 4:35pm
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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. |
Posted By: Loricarol
Date Posted: Jun 07 2009 at 4:38pm
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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. |
Posted By: mainsailset
Date Posted: Jun 08 2009 at 5:13am
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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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Posted By: Sunris
Date Posted: Jun 08 2009 at 1:29pm
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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. |
Posted By: trip2
Date Posted: Jun 08 2009 at 2:38pm
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Every month, have known that since day one but a good message to put out,
thanks ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Shelly Rae
Date Posted: Jun 09 2009 at 11:58am
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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 Mom
. 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! |
Posted By: Nancy
Date Posted: Jun 09 2009 at 5:18pm
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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 |
Posted By: Loricarol
Date Posted: Jun 09 2009 at 5:19pm
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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. |
Posted By: Nancy
Date Posted: Jun 09 2009 at 5:42pm
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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 |
Posted By: Loricarol
Date Posted: Jun 09 2009 at 6:05pm
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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. |
Posted By: Nancy
Date Posted: Jun 09 2009 at 6:17pm
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Dear Lori,
Officially checked is checked!
 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.
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 |
Posted By: Shelly Rae
Date Posted: Jun 10 2009 at 4:26am
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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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Posted By: Loricarol
Date Posted: Jun 10 2009 at 5:19am
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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. |
Posted By: trip2
Date Posted: Jun 15 2009 at 12:13pm
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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+ |
Posted By: Shelly Rae
Date 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. |
Posted By: NINASUZIE
Date Posted: Jun 15 2009 at 2:28pm
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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 you  ------------- Suzie ************** 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 |
Posted By: Loricarol
Date Posted: Jun 15 2009 at 3:18pm
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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. |
Posted By: Loricarol
Date Posted: Jun 15 2009 at 3:20pm
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Nancy
Im praying for your Lori too. I ask God to let the CT be negative. Both you and Lori have been an inspiration to me in this short time ive known you. Please let me know how she is. My chemo starts wednesday. ------------- 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. |
Posted By: Loricarol
Date Posted: Jun 15 2009 at 3:22pm
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So happy you were able to get your port mine is doing great now too! My first treatment is Wednesday! let me know how you are feeling. Did you cut your hair off first? thats what im thinking to do.
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. |