TRIPLE POSITIVE GROUP
Comments
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TonLee and Achpurple - Kindof nice that you don't get tatoos. I have 4 of them now and they are a funny color, obviously not natural really. They drew on me many times but with all the goo I used on my skin it would always comes off. They just measured and put them on again but they had the tatoos to line me up. Good luck on Monday!!
Oh yeah, for each of the zaps I would count. It made me feel like I knew what was going on.
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ArleneA.
I use Florida Hospital in Orlando. It is a good hospital with good doctors in my opinion. Its worth the drive over form Melbourne. I work here so drive an hour an a half everyday so from Melbourne it won't be too bad a drive if you feel well enough and have help getting you here if you need it.
Agada
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specialk.. I know what you mean about your son, mine just came home from college in Ohio, but is only staaying for 10 days, got a job in Ohio for the summer, it will be the first summer not home. He is my helper around the house, since my DH works 24/7. i t is hard to have them move away, my daughter lives in NYC and was home for mothers day, so I got my kid fix for awhile. But I am also glad they werent here to see me go through chemo and being so sick, dont want this disease to interrupt their lives.
Tonlee.. my rads got cancelled this week, so I start on Mon also. So pissed that I lost 4 days of treatment time! Something about the planner didnt get my plan done and ready.
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TonLee that's BS that "of course they are" LANA trained. I would make sure she isn't blowing you off. Granted just because someone isn't LANA trained doesn't mean they aren't any good. My LE MD did recommend several LE specialists and a couple weren't LANA trained, or at least they didn't list it. Remember my LE MD is the president of LANA so I doubt he would be recommending people that aren't any good.
"there are no mandated training standards for lymphedema therapists, so anyone with physical therapy or occupational therapy certification can set up shop as a lymphedema therapist with little or no specific training in the pathology or treatment of lymphedema." source
LANA is trying to change that but they are just a non-profit not a government agency. I would get the name of your therapist and see.
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Arlene A: I had never met with my RO before last Friday, so I thought it was just a consult on how many radiation treatments I would have - well, he did a thorough breast exam (which I obviously didn't know they'd do that day) and I had a CT scan (also didn't know about) so my 2:30 appt lasted until almost 5:00. Either ask more questions about it than I did, or be better prepared than I was. My regular oncologist's office set my appt up, so I had never had any contact with them before my appt.
As I laid there shirtless to get my CT scan done, the RO came in and marked (with a black marker) several areas. Three down the middle of me, on the breastbone area and two others (one on either side of me) on my side like under where your bra strap goes around under your arm. She assured me that even though they marked both of my sides, only the right would get the radiation. No markings for me on the actual breast. They put small clear tape over each marking because IT HAS TO STAY ON THE ENTIRE TREATMENT TIME FRAME. They apparently use them to "line you up" the exact same way every time. I will go tomorrow for xrays where they apparently compare markings again and make sure they're in the right place before starting on Monday. So far, they're not bothering me (I tend to be sensitive to adhesives). I did notice that I have to be careful what shirts I wear, otherwise you can see the highest marking on my chest (right above where my cleavage starts), not that I would care, but it was showing one day and everyone kept thinking the kids had written on me with marker!
I'm not sure if everyone gets marked the same, but I doubt it because I know other people who got tatoos (tiny, pin-head sized) and it's actually on the breast. Hope this helps!
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I think it's unreasonable to expect a person to leave marker markings on their body for 7-ish weeks through SUMMER. There is no way that will work for me. I'm a sweaty pig.
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Wouldn't have worked for me either, so I guess I am glad I got the tatoos.
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Never heard of the tape markings. I had 33 rounds last fall, and I had to have mine done in the prone (face-down) position. They use the markings to line up the beam, based on the planning. My "tattoos" were across my back and under the arm on both sides. Radiation went only to the left breast area. Some went under my arm and a bit below the breast as well. Tape just doesn't make sense as it would shift and need to be replaced. Good luck.
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grammy - I wanted to do prone but it wasn't offered.0
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I have the tape, and whatever type it is, well, it STICKS. I've sweated, showered, lotioned, all of it and so far they aren't even loose.
Here they are:
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TonLee - check those abs girl!
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Hi Omaz....prone was due to location of tumor, size and shape of remaining breast. Also, inframammary fold with skin on skin. As it was, I did end up with a decent burn but I got close attention for that and it did heal afterwards. I liked the radiation staff. The department was well-run, on time, etc etc. Glad its behind me though.
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Ha..thanks
They were better before Tamoxifen! I swear, there is a layer of fluid over all my muscles now....I'm really hoping that goes away...
Not holding my BREAF!
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The tape can come off...and they can remark. My skin started getting sensitive, and the tape was sticky so I pulled it off before it got ugly. I was expecting grief from the rad techs...no issue. Happens all the time. It's easy to remark.if one fades. Don't sweat it. Heehee.
So jealous of the abs. I went out to lunch with girlfriends...and ordered tacos, fish with fresh veggies, but still ate the shell. I regret it seeing those abs!! I put weight on with tamoxifen. I want my male oncologist who tells me it's in my head (and not on my ass...can I say that here lol) to take it and see what it does for him.
I am always thin, but I put on about 15 lbs within 4 months of starting it. I am vegetarian and exercise like a fool. There's no other explanation for it!!!0 -
TonLee I jealous of those abs. This is a photo of my abs the night before my BMX. It's going to take me 6 months to lose all 8lbs and get back to that shape… just everytime I try something else happens. I hope these shingles stop hurting by Sunday so I can start again. I haven't done anything weight training in almost 3 weeks since this crap started!
No I'm not posting a recent picture
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Noooo!!! Don't tell me we have to start posting ab photos!! I gonna post Halle Berry's abs and not tell y'all.
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Yeah, everybody is definitely marked in a different place. My marks have been on there six days today and they're not budging - and they even put sensitive tape on mine (I only assumed it wouldn't stick as good). You can't even really feel that they're there.
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Pasmith..lol
Lago ... nice abs:)
This is the first time in years I haven't been able to see the definition in the ab muscles like a real 6 pack..heh.
It's weird. So long as I'm standing up, it's all good...but I've had two babies, gained 75 pounds with the 1st one...and I have some extra skin when I sit down....I tried to get my PS to give me a mini-tummy tuck (to cut off that extra skin) and he refused. Said he wasn't going to put a scar on me...but I already have a scar from 2 c-sections! He said a tummy tuck scar is "uglier" than extra skin.....
I don't know if I agree....but if I keep softening up on this Tamoxifen....I don't see the point of having one anyway..
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Extra skin? Damned if I see it
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I have a routine ultrasound on my axillary tomorrow, my underarm still feels like there is a pulling sensation after they did the masecomty and SND. Its wierd because I can feel like vessels (tight) going from the underarm across my arm - Im wondering is this lymp nodes- because when they pulled out the sentinel nodes maybe they pulled on the other nodes too making it tighter.........does anyone else have this happen to them, like it tight in the underarm area
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Thanks for all the radiation information.
I'm in the chair for #3 (they have wireless here) and in our private room.
Good news, the doctor says (and she thinks she can) will add back the Herceptin after another MUGA scan (doesn't quite believe the Echo) and if she can add it back, she is very comfortable dropping me down to 4 treatments. BIG Hooray for me. Be good little heart!!!
Sh says Herceptin is the most important here...I think if she could she'd do away with the chemo for my case and just do the Herceptin but that, I don't think, is allowed yet.
I got my ER/PR stats which are 68/ER and 73 PR for whatever that means.
Again, she says we Triple positives are in the best situation.
Arlene
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Red, it may be cording that you're experiencing....sounds like it, that's what I have....I only had a SNB and developed cording...very tight, and if your arms are thin enough, you can usually see the cords...though I don't think most people see them, just feel them....cording is a different animal from LE. Hope you get some answers soon.
Arlene,
THAT'S GREAT NEWS!! I believe eventually they will recommend 4 TX instead of 6 for everyone, so I don't think you're compromising your treatment.
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Arlene you are getting there. I asked the nurse today as I was getting a herceptin top off and I only have 6 to go. Glad to hear that from your onco....need a warm fuzzy today. Libraylil
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Oncologist is also very into the cold caps and is amazed I have so much hair. It iss 50% gone but she feels (after research - she's learning and young so willing) my really think hair impacted the cold from getting to my scalp and now that thinner things should settle down. Not happening now with pulling cap on and off though.
Thanks again and I'm sure hoping I'll be down to 4 and if so, I'm almost done with Chemo and only Herceptin to go through.
Nurses here are so accommodating (and they are swamped today) and really work around my cap change schedule. Doesn't get much better than that!
Arlene
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redninrah - It does sound like cording. My cording was treated by a lymphedema specialist. Her treatment really helped me both with the discomfort pain and also I believe to resolve the cords fast.0
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Hello all - I've been sidelined for a while, and am trying to catch up. Round #4 of AC did me in, and I developed a nasty virus which turned into a bronchial/sinus infection right after it. Blech - misery!
But I had my first round of T-DM1 today, which I will be getting every three weeks for the next year! So far, so good - I feel tired and a bit achy, but that's it. I'm planning to go to work tomorrow, so hoping for a good night's rest.
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Hi ladies- thanks- i will have it confirmed tomorrow. it sounds like cording- I did some research. Best way to describe it like a guitar string tight...coming from the under arm area. There is no pain associated with it, but like a slight pull when i stretch my arm. I started to panick today because as i I was following this so called guitar string, I could feel what I thought were lumps but they simply are what most likely is just nodes. I have a axillary ultra sound tomorrow so i will make sure that they assess this area. Also, I think the "cording" has been there for some time. my surgery was last yr july, but ive been doing some weight training. Ladies - is this condition serious? Should I be going to a massage therapist and having it smoothed out????
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Red - My LE therapist worked on the cords. She said they are inflammed lymph vessels and that it was important to be gentle with them. I would think you would want to find someone trained to deal with cording.0
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Hi All,
It appears I have cording on my AND side and the arm is now swelling. I went to chemo yesterday but the onc PA thinks the swelling is Taxotere related as opposed to lymphedema. She prescribed a diuretic because I have swelling all over - feet, ankles, tummy, face, so I just took the first pill this morning. We shall see. Giant PITA getting this med - pharmacy didn't have the right strength - had the double strength, just have to half the pill on the score line. Called onc back they had a delay in faxing new scrip, called again and they sent it, but the pharmacy listed it now as a refill (why?) and needed doctor approval - this is at 8:00 p.m.! Finally I went and stood there and made them fill it on the spot. Had a mild case of 'roid rage! She also is sending me to have an ultrasound on the armpit. If I look at the graphic for Axillary Web Syndrome my pain has been in those exact areas - bicep, over the forearm and the base of the wrist since I started Taxotere but I had no pain in those locations in the 2 months between AND and the start of chemo. I guess that is why they are blaming the Tax - I had mentioned this previously at an onc visit. The pain comes and goes - if I get warm (I live in Florida - I am always warm!) or exercise or do something repetitive with that hand it flares and then if I rest it for about 30 minutes it goes away. Yesterday is the first day I noticed swelling in the forearm - but I am swollen all over, so... I guess depending on what the ultrasound says and whether the diuretic does work I will have to address the need for a LE referral. The good news is that my echo results went from an EF of 78% to 75% after 3 months of H, and I only have one more chemo - lago get the happy dance ready!
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