TRIPLE POSITIVE GROUP
Comments
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fitz33 - why is your onc telling you that you need the port out? I am curious because I still have mine and I was diagnosed the same month as you. Mine was placed at BMX and my BS says I should keep it if it is not bothering me. MO concurs and I just have it flushed on a regular schedule.
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Fitz33 I know that some people have had their port removed in the hospital or under anesthesia but I liked the outpatient option because it was less hassle. For me it was very liberating to have the port removed. It was kind of symbolic and I felt like I was really finished once it was out. It doesn't feel any different except that now I don't have to worry about bumping the port or having the seatbelt against it which is nice. The main difference is cosmetic. I never liked seeing the catheter that ran across my collarbone (no one else ever noticed) and I was very self-conscious of wearing things that would allow the port to show. Now I'm back to wearing whatever and I never think about it-it's already healed and faded enough that no one notices the scar. By the way, I asked my vascular surgeon what could be done if I needed another port in the future and he said that he can place it very close to the original location but not in exactly the same place-he told me not to worry about that at all.
SpecialK Just saying hi!
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Something I wanted to pass along....
Plastic surgeon says if you have any sort of incision (port, MX, mole removal, etc)...it is imperative to use SPF on it for the first 12 months. Said if you don't, the sun will make it turn red and it will stay red forever!! (Which explains why I can still see some women's port scars from years ago, and others not at all.)
Of course I didn't learn this early enough....mine (from the removal) is red, but now I'm using spf 70 and hoping it won't stay that way. It wasn't red from insertion because the port was placed in the fall and my shirt generally covered it.
Now for a question...met with my RO...he says that a PET scan will never be a good diagnostic for local recurrence now that I've had rads...said rads screws up the PET with all kinds of false positives....anyone heard of this? While it is still ok to use for mets, he says it isn't effective after rads for any area within the radiation field. That the go to diagnostic is the CT.
Doesn't really matter, I was just wondering ....
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SpecialK, I know I should have asked my onc why the port needed to come out now but she answered with such an emphatic "yes!" when my response was "Do you really think I should have it out now?" The NO said it would be under twilight kind of med and I'll need someone to drive me. I haven't gotten a call yet whether that will be in the office or hospital. I really wanted to keep my port for insurance but maybe that's why my onc wants it out, so that I won't constantly be thinking about reoccurrence. She even said the tumor markers blood work stops now. I'm assuming she means I'll have it every 6 mos. rather than so regularly. It's almost like I'm finished with everything so I'm a bit confused. My mammo comes up next month & the onc is having an ultrasound done on my breast because of a fluid which I hope doesn't mean I have to have it drained.
My NP also said I'm doing something for myself every day by taking the Arimidex (Anastrazole) and that's keeping the recurrence from happening. Of course it doesn't mean that it won't come back but I think they want me to start living fully. I've been on the Anastrazole 9 mos. already. You and I are one year cancer free so one more year to go for the most prevalent time fo recurrence. I don't know what happens at the 5 yr. mark because by then everything could be changed and maybe we'll be taking the pill for longer. I'm just taking one day at a time.0 -
I had a one inch. They said my port was deep. They did the shorter needle at my first chemo, and got it in but had to push harder. The one inch solved all the problems.
I was deported during my nipple creation and fat grafting, so was out. All my docs said take it out except pcp who said I could do whatever I wanted. I went back and forth all the way up to day of surgery. I am still nervous that I have jinxed myself by being too confident.
On a happier note, I am looking for a rescue puppy/dog or two. Found the cutest one in cincinnati and applied. Holy cow, adopting a baby would be easier. I have to have a phone interview, a home visit, etc. Whatever happened to the days of going to the humane society to pick out a dog, paying $50 and heading home.0 -
I had my SmartPort put in during my surgery. I hate it! It is annoying; I can feel the darn thing when I move my left arm and it itches. I hope once I get back to "regular" activity, I will notice it less.
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My port was placed two days before my first chemo, under flouroscopy, and between all the blood draws, fluid extras, magnesium and potassium extras, blood transfusions, and all the chemo so far, that it has been accessed over 30 times- so far. Still have another chemo and the year of Herceptin. So I love my port. When I went to the ER, they had trouble getting in, 6 sticks, I said enough so they put in an iv. The onc nurse replaced it with the port the next day. They use a 1inch one for me. Mine is on my right side as I have a pacemaker on my left.
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dragonfly - Hi!
How are you my triplet? Can you believe we are coming up on a year PFC? 0 -
SpecialK It is very hard to believe it's been a year. I'm doing well overall. Really the only chronic issue I'm having is severe joint pain. My various docs think it's too severe to be from the Tamoxifen but I can't imagine what else would be the cause because I didn't have the issue during Chemo/Rads/Herceptin-it started within 6 weeks of taking Tamox. I had a rheumatology visit last week just to rule out autoimmune and I'm waiting on results. It's amazing what a difference a year makes. My hair finally looks normal, I'm not overly fatigued and I don't think about BC every day anymore. 2012 is definitely going to be a better year for the Triplets! How are you doing these days?0
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I hated rads. I think most of the things that still rear their heads occasionally are rads related...sharp lung pains and shortness of breath hiking in altitudes, tight tight skin and muscles on rads side...etc.
Dragonfly!!!!! I just watched your skydiving video with my 12 year old sitting next to me, WOW!!! How exciting, and inspiring!! My daughter is begging me to do it now, and she is getting my sons to start needling me as well! You go girl!!!0 -
dragonfly, I LOVED your jump for joy!!!! Maybe I will have the courage to try something like that when I am done. What an inspiration.
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Geewhiz and Vickilind61 I highly recommend going skydiving at least once. It is the most exhilirating thing I've ever done. By the way, most people say they are afraid to do it because of a fear of heights. Weird thing is that I'm afraid of heights but skydiving doesn't invoke that feeling because you are at such high altitude that you don't feel like you are falling off of something. It also doesn't give you that "drop in you stomach" feeling. It's 60 seconds of pure speed followed by several minutes of peaceful gliding under the parachute. As with most things it's a head game, much like BC, and when you get past your own fear you find that it's really not what you thought:) I've made it an annual tradition to go skydiving on my birthday so I'm up for jump #4 in June.0
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dragonfly, that is so awesome. It is something I have always thought about doing. Andmy fear of heights is specific to man-made ones. My hubby and I, when we were first married, would go hike some of the fourteeners here in CO and I have NO issue with standing at the top of a 14000+ mountain.
I will be watching here to get your description in June.
This is going to be put on my eoc bucket list.
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dragonfly - I too have joint pain - I had L4-L5 disk degeneration prior to BC, and that has stayed pretty stable. I have foot, ankle leg and hip discomfort almost all the time - but it is improved by exercise. Have you finished Livestrong? I am going back this coming week for a reser of the program. I started it during chemo (what was I thinking?) and then fell out due to the LE problems. They can't accurately assess me for progress because of the year gap. I bumped into the recruiter at a BC conference here and she said to just come in and she would re-start me. I have been getting twice weekly PT at Moffitt, and that has been great - both as an improvement to range of motion and LE control, but also to check with the therapist about what specifically she wants me to do or not do at the gym.
My hair is good - glad yours calmed down - I know there was a point it was driving you crazy! Keep us posted about the rheumatologist info - hoping there is something you can do to improve the pain - it wears on you to be in pain all the time. 2012 will indeed be better for the triplets!
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Vickilind61 Climbing a 14,000+ mountain in Colorado is on my bucket list:) Seriously, DH and I are trying to figure out a way to move to CO if he can find employment there-it's been our goal for a while. I grew up in the Shenandoah Valley of VA and hiked a lot in the Appalachian mountains and he grew up in the southwest countryside of England and we both love the outdoors. I've only been to CO a few times to ski but what a beautiful place!0
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SpecialK I'm entering week 5 of the 12 week Livestrong program. I love it! We have a class every Monday (so far Yoga and Spinning) and we are in the gym doing some cardio and weights on Wed. I don't know how you did it during chemo either! I could hardly even take a long walk during chemo with the fatigue and anemia:) I think the one year mark is a perfect time to attend Livestrong and get a lot out of it.
I'm so glad the PT is helping with the lymphedema and range of motion. There is a woman in my Livestrong class with lymphedema and I know they've been very careful to modify her workout in the gym as a result.
Yes, my hair was driving me crazy until about a month ago and now it's finally manageable. Prior to BC I never gave my hair much thought but it certainly became a focus during the past year. I just wanted to look in the mirror and see more of my old self I suppose and I also hated feeling so conspicuous. Now that I have a style, some highlights and some bangs I'm happy with it:) Now I just need to get in shape, minimize the joint pain and do something about the neverending challenge of weight gain from Tamox/chemopause.
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My hips have been very achy also. I first noticed it this winter when we were walking around Super Bowl Village on the one day it was pretty cold. All of a sudden, they were aching and stiff. I was worried that they were not going to keep walking. It went away after I warmed up. It comes and goes. I haven't decided if exercise helps. IF I work out on the treadmill or do a long walk, sometimes they will be achy. Of course my mind goes to the wrong place on every ache and pain.
I am somewhat stiff when I get up in the morning, but it gets better pretty quickly.0 -
I am the worst when I first get up in the morning or if I sit for a prolonged period - like a long drive in the car. I can't flex my ankles right out of bed - if the house is on fire I am in big trouble! As I start to move it gets better, but never completely goes away. I am looking forward to going back to the gym - I have tried walking a brisk 4 miles a day and doing South Beach diet - resulted in zero weight loss - such a bummer. I clearly have to step it up and start back to weights to speed up my metabolism. Also good for the bones. A new development for me is trigger thumb on my right hand, not sure what the solution will be as it is the LE side - needles and surgery on that thumb may be problematic.
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When I had my port put in, my chest and neck were uncomfortable for a while, I never thought I'd ever get used to it but now I barely notice its there. I have never used the cream you ladies are referring to and the slight pinprick doesn't bother me at all. I'm three weeks into my RAD and I'm starting to feel sore and tender. I'm using Miaderm lotion 2x a day. Has anyone experienced discomfort as well?
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will be meeting with MO for treatment plan..Have not had a port put in yet. My veins are pretty shallow.. they always have a hard time finding my vein when I have to give blood. guessing a port will be put in.
Have a few questions
1. Since its summer time, wont the port be visible to everyone?
2. Is there anything you wish you would have asked/or known before the port was put in?
Thank you!!.
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Dventi, my port was only visible if I wore a skinny strap top, but mine was pretty deep they said. It was is the area of my bra strap, so if I wore one, I would have to adjust it as it would rub occasionally.
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My port sticks out because I'm thin and yes people saw it last summer… and they'll see it again this summer. When I go on an interview I make sure that I wear a shirt that covers.
No one has asked me about it but I'm ready with my answer: It's how I keep in touch with the mother ship,tap it twice with 2 fingers, turn my head as if I'm talking to it and say, "I'm doing OK down here."
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(((lago)))
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Love it Lago! 0
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Lago, makes me wish mine stuck out, I just have a straight line cut. Sad...:.... LOL
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fluffqueen: Good luck with finding two rescue dogs--what a great thing you're doing. Dogs are the greatest!
Moonflwe: I loved my port as I have deep veins like you so it made life easier. If I'm only to have blood work every 6 mos. nw I guess I can put up with the poking. Sometimes I still had to have the needle with the port because the nurse or tech needed to be qualified to use a port. and sometimes they weren't. I never understood that as I thought a lot of people would have a port.
dventi: Ask where exactly your port will be placed so that it won't be under a bra strap. Mine is to the right of my ba strap on the left side and almost to the beginning of the cup. I was lucky as my surgeon was a woman and said she was going to place it where it didn't bother me. I only had a little discomfort the first couple of days and you'll need a pillow or something under the seatbelt in the car for a couple of days.0 -
dventi.....Vascular Surgeon who put the port in used the left side because my BC was on the right and I was gonna get radiation. I don't know what would happened if he put it on the right......
Just saying...Good Luck....PORT was a blessing for me.....
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SpecialK-what is the livestrong program you were talking about earlier? Is it something offered at fitness locations?
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fluff - A number of YMCAs around the country have received grants from Lance Armstrong's Livestrong Foundation to institute a cancer survivor fitness program. My local location (and Dragonfly's) have it. What they do is offer a 12 week program, free of charge, that does an entry assessment, a personal trainer designs a program, you do it for 12 weeks, then they assess you at the end to see how much you improved. My Y gives me two days a week with the trainer, but I can come to the facility any time I want - 7 days a week. You can do classes, swim, do a self-guided workout on the machines, etc. It is pretty awesome! Check with your local Y and see if they have it.
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Nevermind...just found it..not offered in Indianapolis. Looks like a great program
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