TRIPLE POSITIVE GROUP
Comments
-
SpecialK you may have both issues, water retention and mild LE. That's what I have/had in he AND side. That arm bothered me when I was exercising too before I was diagnosed. Sounds to me like you might have stage 0 LE. BTW I too have to cut my diuretic in half. It's actually cheaper for you this way depending on how your insurance charges. You'll feel so much better if the diuretic works. I really hope it does for you.0
-
I really noticed an uptick in the swelling in the last few days, but I took the first pill early this a.m. and all I have done is pee, so yay! I made the mistake of a warm bath after a 2 mile walk this morning because I was a little achy and have Neulasta in a few hours and holy moly - in the bath, out again, back in the bath, you get the picture. Tactical error! At what point did they determine it was mild LE as opposed to swelling from Tax - and what diagnostics did they use to definitely say? I guess the good news is that this is coming at the end of chemo and not the beginning so if it is from Tax that should become apparent relatively soon. I am thinking I want a sleeve/glove because I do fly several times a year usually so I am guessing that is a next step as well.
Fortunately I just pay a normal $3.00 co-pay, unless the drug is unusual or super expensive, then the co-pay is higher. After I had mouth sores on tx#1 my onc ordered a special med from RX Direct - it was $1700, and the co-pay was close to $100 so I refused it. One of his nurses gave me a case of Caphosol samples and it worked great and was free. I limited acidic foods on all other tx and have not had mouth sores again.
0 -
SpecialK - Weights aggravated my cording so you may want to keep with low ones for the time being. I also had swelling in my forearms from the tax, it seemed different from LE swelling which I have now. LE swelling for me seems to leave an impression of my thumb if I push on the forearm for 20 seconds. The tax swelling didn't seem to do that so much. Also with LE swelling I wake up with impressions of my sheets on my arm, with tax swelling I didn't have that.0
-
Thanks omaz - those little clues will help me differentiate, which is Tax and which is LE. Just spoke to the folks at base about faxing my scrip for the ultrasound so hopefully I can get that done ASAP. They said just come in and we will get you set up - I am like sure, I will drive 60 miles round-trip, the day after chemo so I can drop off this paper...NOT! I did just start that Livestrong exercise thing, but the only arm lifting I did was the assessment over a week ago and that was only 4 sets on one machine to set a baseline. When I went on Wed. I was supposed to do arms but I did legs again on a different set of machines because I had noticed the cord in my armpit by then. I just tried the thumb test you mentioned and no impression, so hoping it is the Tax.
0 -
i have just started weight training, so this might be what aggravated the cording......im not sure tough, ive always had a pull in the underarm since surgery last yr, and now that warmer weather is here and im wearing short sleeves, i was just feelin my arm close to underarm and im like ugh what the hell is this wierd strings....so i panicked......sometimes its best just not to go searching for stuff around the body, but i guess the searching pays off, as the result of my searching got me to find my lump
Anyways, ultra sound is today, so i will report back and find out what it is........wish me luck girls
0 -
Red: The lump could just be something pulled from the weight training. Keep us posted and good luck.
LE/Cording: When does it normally begin or is there no pattern? Is this something you need to worry about for life? I haven't seen anything yet and hoping it stays away.
Thanks, Arlene
0 -
Yes Arlene LE is a lifetime risk but with only 2 nodes your risk is low. As I mentioned my 4 node arm with the bad cording (better now) doesn't have LE. You should really read up on reducing your risk: linky Check out the rest of the site. Lots of good info there. Information regarding cording is here: linky
Weight training is actually good to prevent lymphedema but you need to do it gradually and not over due it. Not sure what the weight limit might be but since I never lifted more than 10lbs hand weights I know I'm not even close. I am starting with 3lb weights.
I would discuss this with your doctors. Hopefully one of them will be informed and be able to give you information.
Redninrah you really need to stretch out those cords before you weight train. I would think building the muscle would only tighten things up. You need to meet with a PT to get the proper stretching exercises.
0 -
Just checking in after finishing Herceptin this week! It was an emotional day. I ended up ordering custom decorated cookies from a local woman who does them from her home. She made pink ribbon cookies and wrote Thank You on them, and then they were all in individual clear bags with pink ribbon. I also had her make some smaller ones to give to everyone who was in the treatment room getting infusions and their families, etc. I was so happy I did that. All the staff loved the gesture and every cookie (48 in all) was gone before I left!
And when I left I had to say goodbye to all of those women who made this past year bearable. I told them that I have had good medical care in my time, and I've had bad medical care in my time. And every single time I was at that hospital, I always felt like I was treated exceptionally. They literally saved my life (I hope so anyhow). I was crying, they were crying. Crazy as it is, part of me will miss going there and seeing them. That's how great they are.
So then I had a MUGA on Tuesday (was fine). And I saw my BS on Wednesday to schedule my port removal - next Thursday. I thought about keeping it in just so I don't jynx myself - but then I heard I'd have to go in regularly to get it flushed. And I don't know if I mentioned this here before, but saline flushes in my IV's have been know to make me vomit - I can't take them. So it's coming out. My BS only does this in the OR though, so I have to be sedated, etc. Oh well.
Feeling kind of like a normal person right now - no cancer appointments for 3 months. It's a good feeling. I can't wait for all of you to feel the same!
0 -
saralmom:
I can't wait until I have my last Herceptin - I'll be scheduling the port removal ASAP! You're not jynxing anything, just trying to move on. Don't think I could handle leaving it in and having to get it flushed either, sometimes it takes them 25 minutes or more to access it!
It was really nice of you to get them all something - those people do lots to save lives every day and usually just get the grief when something goes wrong.
0 -
saralmom - Big congrats on finishing herceptin!!! I have four more and AM counting!
LE and weights - My therapist said for me to start back to them very slowly, 1-2 pounds weights and just one set. I have been doing 2 and one set of 10 in each position very slowly and haven't had any problem so far.
As far as risk for LE - I only had 2 nodes removed but I had cellulitis about 10 days after surgery and apparently that puts you at increased risk to develop LE during radiation treatment, which it what happened to me.
0 -
★ ✩ ★ ✩ ★ Happy Dance for Saramom! ★ ✩ ★ ✩ ★0
-
Saralmom - so happy for you! And very sweet to bring the cookies, I don't think the hard-working nursing staff gets enough recognition so good on you for doing that!
0 -
Hip, hip hooray Saralmom: A little late but one of my nurses suggested mints for the flush and they work wonderful...I barely taste the saline flush. If the rest of you all haven't tried them, give it a try because it sure works for me and I am very sensitive to smells and taste.
Lago: I forgot to mention that my onc says the rash on my cheeks is from the taxotere and not the roseacea. She said to use a cortizone cream on it and it will go away after chemo (and between treatments).
Thanks for the links on LE, etc. i'll check them out. You know, I put 2 nodes (the sentinels) but the biopsy report showed that she removed 8 but she swears the other 6 were like little grains of sand and came along with the main ones and that she will have the report redone. Eight scares me and I haven't followed up with her yet....but no problems thus far.
Arlene
0 -
Arlene -
Oh yes - I have a system in place - never to be deviated from - hard core mint gum that my mom always brought to every treatment. The other day at my MUGA my mom wasn't with me, and I had to use diet coke - a mouthful of diet coke before every saline push. It was the only thing I could buy in the waiting room! It worked ok, but the gum/mints is way better. But I did find out the hard way - spent my first tx of TH in June vomiting during every flush - and that was back when I getting like 5 bags of stuff. Bad day. Total PTSD from that.
0 -
Thanks for the well wishes everyone!
Lago - love the happy dance!! That song takes me back. My kids were little and they loved Sugar Ray!
0 -
Arlene I have 10 on one side 4 on the other. 10 side is mild LE (Between stage 0 & 1). 4 side is fine. My neighbor had something like 25 removed. When I last spoke to her she had finished chemo and still had no LE.
Don't assume you will get it. Just do what you need to do to reduce your risk. My mom has had LE in her legs since as long as I can remember. Her uncle had it in his legs too. It just might be in my family genes. My BS was still pretty shocked I got it.
0 -
Had xrays done today, I thought, to compare with my markings from the CT scan - I didn't know that I would have to lay there perfectly still for 30-45 minutes! Also, while laying there perfectly still, they marked new places (all on the actual breast) and removed the ones they put on during the CT scan. It's very hard to hold your arms above your head for that length of time and a very weird feeling having people mark on your breast with a marker while you don't move. They gave me a script for a cream called Biafine, has anyone used that?
0 -
Biafine? Let me know hhow that works for you Ach.
I ordered emu oil, have aloe vera, and will pick up some aquafor this weekend. I'm also going to take the curcumin (sp?) and possibly iodine...I have to research that more.
I went through the exact same thing today you did!! Except they also marked me for the bolus.
The machine is really loud and laborious....I told my husband when I got home it was odd that so many women in the center brought their husbands to chemo for support, but face this monster alone. I find the Rads part of treatment WAY more intimidating than chemo.
And I'll be frank. I don't have a good feeling about this for me. My gut is telling me not to do it. (I didn't get this "feel" for surgery or chemo so it's not "fear.")
Just a gut feeling.
0 -
TonLee - What are they irradiating for you? Also, did you get a second opinion about the rads? I think I remember that you did - sucks to have a gut feeling and go against it.0
-
That's weird, TonLee, I felt that way about chemo but not so far with rads. It was very hard going against what my gut was telling me! Especially after I started having allergic reactions to that second round of TCH. The machine today was very quiet for me, think I could have fallen asleep if I weren't laying there shirtless with my arms going numb!
0 -
Weirdest thing for me was when they put that band around my feet to they stay together. It's a very odd position and you just can't thing about it!
0 -
Hello all, I was diagnosed Feb. I've had double bi-lateral mastectomy. I am also triple positive. Awaiting chemo, should start in couple weeks. My onc has given me two choices of chemo, AC-TH(Adriamycin,Cytoxan,taxotere,herceptin,tamoxifen) or TCH(taxotere,carboplatin,herceptin,tamoxifen) How did any of you decide on your treatment? I'm very torn, she was comfortable with either or but did say protocol is AC_TH but I could go either. I'm 34 and not close to menopause but so afraid of the chemo and how its gonna affect the rest of my body.
0 -
hello all- had ultrasound done on my axilla- everything is fine. When i asked her about the cording, she stopped me there and sound, i only do the axilla and dont know anything about that. UGH!
so i stopped in to see my Nurse who is the assistant to my surgeon and show her my arm, she said it could be cording, but usually this is a definite line going from the top to elbow or even hand..which i dont have. She said do more stretches, but more importantly ensured me, its NOTHING.
so im happy
but ya i was pushing it with the wieghts, also, i have booked in to see a massage therapist who will work on this area and has some experience in this DPT 0 -
achpurple I got my pictures and extra markings yesterday. I thought the tatoos (tiny sm dots) was all I was getting but they put a huge purple X on top of my boob with a plastic dot on top, must keep this on for the duration. My arm was killing me after being over my head for 1/2hr!
I dont know why this radiation stuff is so emotional, but over on the rad thread i hear many women say how emotional they are during this process. I totally thought chemo was my worst, but never really had any mental breakdowns during it. Maybe cause we are physically so exposed, lying there with our shirts off and everyone touching and marking us. Did a little retail therapy after yesterdays markings
Tonlee I am looking at this as my extra insurance, dont want to look back and say "I should have" also trying really hard to trust my docs, as hard as that is sometimes. Sometimes I feel like just a number in the assembly line of cancer patients.
0 -
cotrinh - Welcome aboard this thread! I saw two oncs and one offerred me the AC-TH and the other offerred TCH. There is a study out there that hasn't actually been published in a peer reviewed journal yet (that I know of) comparing the two regimens called BCIRG006. I liked the TCH doc more than the other and went with the regimen he was recommending. He liked TCH because there is less potential for heart complications when given with chemo tcompared to AC-TH. Did you get a second opinion? I think as far as efficacy they see a slight advantage for AC-TH.
0 -
cotrinh Sorry you had to join us. My onc recommended TCH. She asked me my concerns up front and I told her heart issues. I don't have any and I want to keep it that way. Herceptin can give heart issues but mostly when doing it with A… that's why you get AC first then TH. You can get heart issues with just doing A.
AC-TH was what they tested first. The stats say that this works slightly better than TCH but IMO it's not that significant. I do find though that more women with node involvement seem to do AC-TH. Not sure why.
Keep us posted.
0 -
Ach, I'm glad your machine is quiet. Mine is really loud, as in one must YELL over it to be heard.
Omaz, treatment is full chest, super clav, axilla, and skin. The whole banana.
Cotrin, I didn't choose TCH so much as there was an Adry. Shortage the week I started and the
Onc didn't want to risk not being able to get it. I have read though that TCH seems to be
easier on the hair..meaning it comes back sooner and lots of women never go completely bald. Or that's the impression I get from reading other women on this board...I could be wrong about that....but I am almost 8 weeks out of TCH and my hair is growing, my eyelashes are coming back in...etc. My eyebrows are another story!Also, the red devil (adry) is harder on the heart. The damage it does generally can't be undone.
Carberry, I am a good candidate for rads with the lymph nodes, skin involvement, etc. I do believe this. However, this will sound totally stupid, but oh well. I feel as if I've already hit my
life time limit of radiation. I won't go into the details but I've worked around weapon's grade radiation...and been in situations that 20 years ago were "Fine" but now are considered "unsafe practices." That bothers me. What does it mean for my total life exposure? And why hasn't anyone in the medical community asked about past exposure? EVER???On top of that I have this whole TE..and my wound just closed a few weeks ago (after being open for over 6 months)...I just gots me a baaaaaaaad feelin'.
I believe in my gut. But I want to believe the recurrence statistics more....so I will do the rads....do it and reap what I reap.
0 -
TonLee - The most important thing in rads is a really really good plan in my opinion. Ask your rad onc to SHOW you the plan. Ask him to show you where healthy tissue is exposed and ask if there is anything that can be done that isn't to minimize healthy tissue exposure. I was so annoying with all my questions during rads that the tech took me back to his room and showed me even more details about my boosts. I think seeing the plan and the fields really helped me cope. I think there are treatment choices the rad oncs make in developing the plan. I met a woman during rads that had been with one rad onc for the beginning of her treatment, burned her skin terribly, then switched to another who told her 'they understood why the first onc did it that way but they wouldn't have done it that way' and with the second onc to finish her treatment she did not burn anymore.0
-
i started my period today BOOOO after having a nice break!!
0 -
TonLee: I am really surprised that your intial paperwork didn't ask about prior exposure. Mine did but I'm in NV where we had/have the Nuclear Site (which I worked at for years) and I was clear to indicate all that in case they were tracking stats. And my onc and I went over all of this too. Guess every facility handles things differently. Rads scare me a lot too.
I'll know real soon if I can reduce to 4 versus 6...all depends on if they add the Herceptin back which is looking very likely.
Hope everyone is having a great Saturday!
0
