2010 Sisters
Comments
-
GOODNESS!!! So much going on here today!
lago - great news on the nodes!!
cathy - GOOD NEWS ON THE BONES!!! And yes, me and tape do not get along at all!!! Tegaderm is the worst - the nurse that took care of me when I had my port put in didn't believe me until he had to take the Tegaderm off my hand where the IV was. He used an alcohol pad, which helps dissolve the glue so it comes off a little easier, and still my hand just flared up red. Paper tape is only mildly better, as long as it doesn't stay on very long. For the port incision, they did use surgical glue, and steri strips on top of that, and then covered the whole thing with a piece of Tegaderm. That was on Aug. 23rd; the skin on my chest where the port is is still not right. Just tell them to use the lightest pressure possible and take it off ASAP.
grannydukes - You are going to be just fine. I don't remember if you are having sentinel nodes or the full axillary node removal?? Node removal is a diagnostic tool, unless they've already determined by some other means (ultrasound or MRI?) that cancer is present. It helps them figure out if cancer has spread, how far, and therefore what treatment plan is best for your case. The drain issue seems to be a doctor preference - some use them, some don't. I had one drain after my axillary node dissection; it stayed in for about 10 days I think. It was a hassle and I was fussy and wanted it out, but my doc said it was doing its job. Didn't matter, I still had fluid buildup and leakage through my breast incision even after the drain was taken out, and got an infection later. Hopefully your doc will share with you her philosophy about the drain and why she prefers to use them. I know it has been a long road for you but it sounds like your process is finally moving along. I will continue to pray for your peace.
Ladyinbama - I HATE NEULASTA!! Your discomfort could be a combination of your active day and the Neulasta, or one or the other. For me, the bone pain from the Neulasta is different than ANY pain I've ever had before. It is not severe, and responds with ibuprofen, but it is different. I've had migraines for years; this headache is different - I am *aware* of my skull bone being sore if that makes any sense. And my pelvic/hip bones. And a week later isn't unlikely; tomorrow will be a week since my shot and still had the headache for a little while today.
0 -
Big Hug to you Grannydukes!!!!
0 -
ladyinbama-->My neulasta pain always hits a week after the shot. That is when the wbc are lowest, and therefore there is more activity in the bone marrow to produce more wbc. For me, the pain is like electric shocks going up my spine. Last year I had neupogen shots and the pain was much worse for me, I would alternate ibuprofen and tylenol every 2-3 hours. It worked very well for me. Just make sure its ok with your onc to take the ibuprofen. Mine lets me as long as my platelets are ok.
0 -
Can someone please tell me what neulasta is? I feel so lost and confused. There is always something to question.
Granny, I too was so afraid of the drains, freaked me out. I had four removed and one was positive, no drains needed. I wish you all the best. Big hug! Now I'm freaking out about the damn port!
I have my port placed next Tuesday. I was told a radiologist should do the port and not a surgeon...any thoughts on this? I wish I could get a pick line, but was advised against it.
Chemo starts the following Tuesday....not sure how I'm going to walk in for that appointment.....I know one foot in front of the other, I hope they don't fail me!
I'm wondering if I should cut my long hair before or after chemo????
Is anyone able to work, even part time during chemo? Can a job be managed? My employer is giving me a flexible schedule, I can't really afford not to work - I carry the insurance policy!
Sorry for all of the questions.....
I hope one day I am able to help another sister - maybe by then there will be a cure!!!!!
For all who are having surgery and procedures, I wish you a speedy recovery. For the sisters with good news - I celebrate with you!
0 -
TMarina: Thanks, makes sense, I had hoped I had bypassed the neulasta pain.
Jag: Neulasta is a shot they give you the day after chemo that builds up your white blood cells; it's to keep our immune systems functioning. Most docs use it. Are you sure you heard right on the radiologist doing the port? I've never heard of that; it's a surgical procedure. Don't freak; it's an easy one.
As for the hair, it's an individual thing. I cut mine the weekend before my first chemo. I was kind of curious how it would look short since I haven't had it real short since I was a child. It was about shoulder length, and I went SHORT. But it's cute. I like it, DH hates it. But I figured the short hair is less to shed and shave when the time comes, which should be one day next week according to my doc.
0 -
jag - neulasta is a very expensive ( my drug store told me $2400.00 per shot) injection you get the day after chemo. Not sure if all chemo patients get it but I just ordered mine from my drug store (covered by my drug plan). It stimulates the bone marrow to produce white blood cells to help your body re-build your immune system that is pretty much wiped out during a period after chemo. At least thats how I understand it. Also I'm getting a picc line put in by a radiologist tomorrow. Funny but my surgeon told me they only do ports if someone is on chemo long term, (at least here in Ontario). Not for us who are only on it 6 rounds. Yet I hear it is the norm in the U.S. Not sure if its always done by a surgeon but I know lots are. Up until now I have been working part time and will continue to do so after chemo. Since I'm the boss I can assign my work as need be. I have been busy training my assistant to do my work and I'm only a phone call away at any time. There are things that I must go in to do but they can wait till I'm up to it. This way I keep work covered and still have my job to go to when done all this. I can imagine it wouldn't be so easy for most. Its nice your employer is giving you a flexible schedule. Hope it all works out for you.
Cathy
0 -
I am only getting 6 rounds, but I have a year of Herceptin. The Herceptin is given every week for the first 18 weeks and then once every 3 weeks. If I didn't need the Herceptin I wouldn't be getting the port. The surgeon who did my lumpectomy said that he does do ports and I would be under a local. My friend who is a radiologist said that by far I should have a radiologist do it. He is the one who recommended my surgeon, also his wife's surgeon for her BC - he is a top BC surgeon in Boston. He said it was nothing against the surgeon, but radiologist are the way to go.
My onc never mentioned neaulasta, I will put it on my list of questions to ask...thanks for the info.
0 -
Jag, Neulasta can also be given right after chemo, that's when I had it. That way I didn't have to make another trip back the next day. Also re: radiologist vs. surgeon, I was told the same thing. It's a very, very minor surgical procedure and fewer surgeons are doing ports these days. Radiologists are specializing in placing ports and other implants.
I don't recall who you have planned to do your procedure, but I'm sure you'll be fine. A surgeon is definitely capable of doing the procedure (my hubby is a doctor so I'm passing on what he's told me.)
Also, about the picc line - I think you'll be happier with your port. It's fully enclosed so it's not nearly as likely to get infected, nor does it need the maintenance. The port will barely be noticeable. The picc line also has to be implanted into your heart so I'm not sure what advantage it would serve. Both are very simple to insert and remove; my port was placed under very mild local sedation and caused minimal discomfort later.
Hair...maybe try a new, shorter haircut. Give yourself a little "adjustment period."
And finally- work. You have your hands full! Go in and do the best you can. Take care of yourself and cut back if you need to. Your health has to be #1. If you have to take some medical leave, so be it.
Remember, your sisters will always be here for you!!
0 -
I just want to say I really do feel the love....my kids would die if they read this, but it's true. You ladies are so wonderful with all the info and encouragement. I can't tell you enough how when I come to this site, usually at night when the teenagers are fed (for the third time) and the nine year old is finally out of energy - I find a sense of calm and actually relax a little bit. I haven't met any of you, I hope one day our paths will cross in person. I feel closer to most of you than I do to people I have known for 10 years. So, thank you for giving me a place to feel safe and normal.
0 -
jag - I second you post. You said just what I wanted to say tonight.
Beverly
0 -
Just another couple cents on the port . . . there is a specialty known as Interventional Radiology. The catheter line (tiny tubing) that is attached to the port runs through the chest into the superior vena cava; the process of placing that line is guided using on-screen imagery (ultrasound and/or xray, I believe), and an Interventional Radiologist is trained in the procedure. When I had mine put in, the room I was in was much smaller than an OR, but still had several assistants around, the RN who prepped me, and the IR, and there was a 5-panel set of computer monitors for the images. Once you're on the table and ready, it only takes about 20-25 minutes total. And although I am only having 4 rounds of AC, the Adriamycin is very hard on veins, and going into the bigger vena cava is a bit gentler, so my onco was all for the port. I could have chosen not to have it, but the veins in my hand are already just about blown and it takes too many sticks to get a good IV going.
As for hair, well, I typically have an enormous amount of very curly hair that usually drives me batty anyway, so once I knew when chemo was going to happen, I went ahead and had it cut shorter than I've worn it in just about forever. It hasn't started coming out yet, since I'm only at Day 8 post-infusion, but sometime after the 14th it's supposed to start. My BFF's hairstylist offered to do the shave for me for free, in her salon after hours. Wine will be consumed.
Neulasta - the "retail" price on my Rx was nearly $3,500 per injection. Thankfully I got 2 for $20 on my pharmacy plan. My onco prescribed it when we were considering dose-dense AC followed by DD Taxol. I opted for regular AC x4, every 3 weeks, and he said I don't really need the Neulasta, but since I already picked it up from the pharm, I used it. I gave myself the injection at home the next night after infusion. I was told some insurance plans won't approve it unless you go in for the injection, but mine apparently doesn't have that restriction so I got to give it to myself. Not sure I'll do it again.
0 -
Hi Ladies:
I had my first cancer treatments in the U.S. two years ago and have now moved back to Canada - anyway I have a port and have had it for two years - my onc. wanted me to keep it forever - but in Canada they are extremely "suspicious" of ports - PC Dr. wants it out "now" - of course now that I am recurring guess it'll stay for at least a while - I was having it flused every six weeks and it was just fine until the cancer clinic here flushed it and something went wrong and it doesn't "work" anymore - they told me they can "revive" it - the reason for the port is that delightful Taxotere collapses your veins - it doesn't take many applications of Taxotere for this to happen so to be on the safe side we have ports - also they are less likely to get infected than PCC lines and mine was placed by a surgeon but it sounds like that might be changing - it was a nothing procedure done under "light" anaesthetic and I didn't feel a thing and it has never bothered me but like everything else we are all different and I may have been the lucky one.
0 -
Hi Jag - it sounds like things are moving along for you exactly as they should. My port was put in by an interventional radiologist. Very quick procedure - they do dozens of these a week so they really know what they are doing.
I freaked out about getting chemo two days after the port placement - but my husband (knowing that I was also anxious to get going with the treatment phase) kept pushing me along saying "lets just go to the oncologist and see what they say". Of course I went and ended up getting chemo - feeling very tender and not at all ready. The oncologists office knew I was very anxious and gave me some anti-anxiety drug in my IV before they started the chemo - and I ended up sleeping through most of it.
As for hair - I had mine cut before the chemo started. The poor stylist had to cut it while I sat there and cried the whole time. Once the hair starts coming out it is a big mess - even with short hair. So when it really started to fall out I had my husband shave it. That was great - I have all sorts of knit caps and scarves that I use - never got used to the wig I purchased. Chemo has been over for about 10 weeks and I have a nice fuzz already all over my head. I think I will be able to look normal and stop wearing head covers in another 3-4 weeks.
Good luck - you'll do great!
0 -
Lago: Yaaaaay!
0 -
jag and mac5 - It is amazing isn't it? The sisterhood here. The support and just "the place to go" where we are all the same. I'm so glad you feel this way too. And I'd do whatever I could to help another sister and I know they are there to help me and they do. God Bless each and every one of us. Thank You to ALL.
Cathy
0 -
Hi all, out of town on a business trip and wanted to share a little nice surprise I had. The rental car place upgraded me to an SUV and threw in a GPS then when I got to the hotel, they upgraded me to the Presidential Suite. Woo Hoo. Mauybe the airline will uprade me to first class Friday...NOT!
Glad to read eveyone is feeling OK (well, as Ok as we can feel) and to give big (((HUGS))) to my sistas!
0 -
lago - congratulations on the negative nodes. That must be a relief...
I had a lupectomy with node dysection and then a mastectomy and had drains with both. I think it all depends on your surgion.
0 -
Jag: One more thought on the hair. You can save yours. When I cut mine, I pulled it back in a ponytail and the stylist started by cutting off my pony tail so I could keep it. Yesterday, a friend of mine, who just finished her chemo, showed me how to use my hair to make bangs to wear under a cap, sort of like the "halos" the wig places sell. It's oddly comforting to know I will be wearing my own hair under my caps.0
-
Good News! Drains were removed to day and the PS said as soon as I was off pain meds. I could drive. I laughed and said what pain meds? Was I supposed to have pain meds? At first he had a shocked look on his face then he realized I was the one allergic to everything and was only taking Extra Strength Tylenol. He said everything was healing up nicely and will see me again on the 20th. I will have at least 2 more tissue expander fill-up then after the radiation they will put in the permanent implants. So probably another 4-6 months. Anyway with the drain our I do not have to sleep flat on my back which will help with some of the bone pain.
I want to go with my daughter and get a manicure, but I am so sleepy right now that I need to go take a nap. I'll post more later. Just wanted to share the good news.
Amy Jo
0 -
Congrats to you Amyjo! And everyone else that has good news this last week. Lots of positive postings. I start radiation next week - the final phase! I can't wait to get it started...... and finished. Then 5 years of tamoxifen or AI.
Jag - we have all been there with the ports - and we will all be with you when you get your put in next week. Picture us there holding your hand. I find myself going to sleep and thinking of all of you on this site. When we all meet someday - we will recognize each other by that thin faint scar on our chests from the port!
0 -
Good morning; just catching up with all of you, glad to see you are all doing well and managing as best you can. Fabulous! In Winnipeg, MB Canada, I have not yet had a shot of Neulasta. I have my blood work done a day before my next scheduled chemo treatment. If the counts are low, they will decide either to wait, so I can build up again naturally, or to proceed and have me start the injection. The shots are costly and work well. I hope I never need them!
On the port issue, I was given a choice and chose the port and I am not sorry. It is hidden and out of the way and I do not need to worry about showering or using my arms, etc. I found the surgery rather painful once the freezing wore off and I was awake. It was pretty tender for several days. Now that I am healed, it is incredibly wonderful for use at chemo time. I freeze the skin with Emla cream an hour before going and then they tap into the port with no pain and no effort at all!
I have seen and watched some real horrid picc line experiences and am glad that is not me!
If all goes well, next Thursday will be chemo # 3 for me. I am doing all I can to enjoy these few days of 'feeling pretty great' while I can.
take good care and just breathe. . .
Teklya
0 -
amyjo- I grew up in Iowa barrel racing my Quarter Horse, Jackbox! Those memories are some of my favorite. When I am in the chemo chair, I intentionally go back to those sleepy, hot, fragrant summer days riding my sweet horse through the pastures. By the way, I have NEVER met a Texan I didn't like tremendously. Must be that incredible independent "can do" spirit. You sound absolutely fantastic, just out of surgery!0
-
Amyjo, It's great that you're doing so well! Rest up and get all the pampering you can. You're a real warrior!!
Thanks for sharing the good news!
0 -
my dr.convinced me to have the drain.i think she is right.i posted the question on other threads and majority said yes and so did the dr.i dont have a car and the dr is far away bla bla bla infection etc.so she won.
hope everyone is doing good.God bless.prayers and hugs to all
K
0 -
Well the dr appointment was cancelled today. They were going to give me an IV treatment and I can not have an IV in either arm since the surgery, so we will have to wait until I can get a port before treatment can begin. I go to the BS on Monday and then I go back to the onco on the 22nd. So now comes the long delays. Monday I will begin being that squeaky wheel. And boy can I squeak loudly. Hope you all have a wonderful weekend.
Joy and blessing,
0 -
grannydukes: the drains are not such a big deal. I had 2 for 1 week. I know if I didn't I would be filled with fluid and been very uncomfortable. It's only for a short time.
Sorry amyjo. The cancellations/waits drove me crazy but now that I've had surgery and the cancer is out I'm a little more laid back about time… or maybe just not looking forward to chemo. I'm sure I'll have a port too.
------------------------------------------------------
BTW saw my PS today (He's doing all the follow-up). He was very pleased with my progress and how everything looks. Says I'm a great healer. Gave me a few more exercises to do. He says if I'm up to it he will do a fill on Wednesday. Just call Monday if I'm up to it. Wow, 1st fill 2 weeks after surgery. I must be healing fast.
0 -
Hi everyone,
Just I got back from a trip to see my DD. It was so nice to get away from work, app'ts, and to just relax.
I was able to see my PCP before I left because of the pain in my arm. He saw me that day and gave me a script to see a lymph specialists. When I went to set up the app't with him I mentioned I would be flying out in two days. He saw me during my lunch hour the next day because he didn't want me to fly without a sleeve. I can tell you it really helped and was skin toned so I didn't feel like I stuck out.... it's enough that I "feel" different. Check it out ladies if you're having lymph problems. My incision (2x) were just under the left armpit so it created a problem with drainage.... so the lymph guy says. He also said that the radiation didn't help.
I'm so amazed at all your strength an courage! I'm drawing from you.
Blessings.
0 -
lago - so glad you are doing so well. I won't get my fist fill-up until the 20th which is 3 1/2 weeks after surgery.
My primary physician called today just to check up on me and told me to come to the office if I did not get to feeling better. I have had a slight headache and very low grade fever today. I don't really feel bad, but I don't feel good either. My DH just said it was time for me to go to bed. I guess I'll be a good girl and head that direction.
Joy and blessings
0 -
grannydukes- You are going to be just fine now that you found a REAL doctor!
amyjo- Sleep tight. I hope you wake up without a headache and fever and right as rain. So sorry about the delays, but I just KNOW your squeaky Texan ways are going to get things rolling again.
Speaking of delays. As I totally screwed up and forgot my MO appointment Tuesday (chemotardness) I was so worried they wouldn't be able to get me in again soon. Today they called and I will see the MO on Tuesday, then have my CT on Wednesday. This is truly a miracle with this MO. There is a God in heaven! They say they will take a mold of my breast. Now that would make some kind of sculpture! Wonder if they will give it to me if I ask? Anybody have this done yet?
0 -
Hi Ladies - Just saw this thread and I was actually dx at end of 2009 but Chemo (TCH) began on 1/18. Had a port and SN removal on 1/13. Am glad to have the port but will be triple glad to be rid of it which will be late December. Have finished the TCH and am now just receiving the Herceptin every 3 weeks. Wow - what an experience BC has been! I didn't find this site till a couple months ago and really wish I had known about it earlier - would have been a great help in the first months and while going through the TCH. Now, whenever I have contact with anyone sharing our experience, I make sure they know of this site. I too wait till the day's chores and work is finished, then check in and never fails to relax me. There is something special about sharing our nightmare together and just knowing we are not alone. I could write all night and still not cover everything that has happened to me during this experience - most bad but some good too. BC.org is one of the good experiences and glad to meet and know all of you.
Louise
0
