TRIPLE POSITIVE GROUP
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Omaz,
Ok...good to know. I can call today then and make an appointment.
I'm having the entire breast, the super (supra?) clavicle, the axilla, and bolus on the skin.
Dreading it....not scared, just the thought of going back to the hospital every day for two months makes me TIRED.
Did you work out during rads?? Was your mobility affected at all?
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TonLee - Yes I did as much as I could. I actually think I may have done too heavy free weights for during rads (5-8 pounds) and that started the cording. Let's just say I was fine one day, did what I thought was a decent workout with the weights and woke up with pain down my arm and got the LE diagnosis. The cords didn't actually show up till much later, it started with pain down my arm from the armpit to the wrist down the inner part of the arm. I would still work out but maybe lighter, apparently the radiation can cause inflammation in the lymph system.0
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Thanks Omaz, that is so helpful.
I haven't been able to lift heavy (upper body) since last September!! But I do lots of resistence and smaller 10-15 lbs weights....
My RO says women who "don't usually have LE after surgery, don't usually get LE from Rads." That's his 4 1/2 years of experience talking there....heh. I think the chances of getting it are higher for me since I have the cording....but that's just my thought.
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Did my Livestrong deal yesterday - the trainer was looking for the heaviest weight on a set of ten reps that I felt comfortable with, which took some experimenting. For the bench press she increased by 5 lb increments until we found my limit but that meant I did 40 reps and I have not lifted any weight in more than 6 months. I was nervous that I was going to be sore this morning but I am not! I also pushed 120 lbs on the leg press after 2 lighter weight tries, so 30 reps - I was very surprised, and my legs are not sore. I apparently am stronger than I thought at this point. I know you ladies who are working out regularly could kick my "you know what" but I am making a start, right? I am excited to see what her training plan is next Monday.
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That's great SK.
Just a little info...if you're going to get sore, it can happen 1-3 days after. Because of chemo, muscle breakdown, and things I don't have time to get into right now, the soreness can be delayed by as much as 72 hours.
If you don't get sore at all...that's not good. It means you didn't break down any of your muscle fiber and weren't lifting your "max" at any point....which is ok I guess when just starting out (to make sure your form is good)....for maybe two weeks...but the whole point of lifting weights is muscle exhaustion/"tear down" so they are remade stronger....
Just something to keep in mind....
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Thanks TonLee - you are such a fund of exercise info, I love it! I should clarify to say that I am "aware" that I did some exercise yesterday, but I was expecting to be that kind of sore that makes it hard to get the coffee cup off the 2nd shelf, or get out of a chair! Because I have not been lifting any weights for such a long time, followed by 5 surgeries, mid-chemo, I did want to be cautiously aggressive, if there is such a thing. As I have moved around more this morning I am feeling some tightness around my TE. It is a weird sensation because I am pushing with muscles in my chest but only have one TE so the sides feel completely different from each other.
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SpecialK--like TonLee says, the pain that comes from gain rarely hits me the next day. Inevitably, it's the second day. It's a different pain from that which means you did some damage. I've gotten to a point where I see it as something positive that tells me I had a great workout. But when it's hard to get down to the toilet seat, I sometimes wonder about that!
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Lol Pasmith!!
So true!
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Update:
Met with the Onc OB today.
He said he doesn't recommend a hysterectomy or Ooph. That the Tamoxifen will stop my periods for the next five years (highly ER+). If I have any bleeding at all (periods, or after sex) he will have to do a uterine biopsy via the OR (I have a bicoronate uterus and to biopsy both chambers requires OR). If that becomes an issue (happens more than once, we might want to revisit the whole hysterectomy idea.)
He also said:
1. He's never heard of anyone not "metabolizing" Tamoxifen...or that it doesn't work for some women.
2. There are no tests to know if it is working (if it's not I will start bleeding).
3. There is no such thing as producing too much estrogen unless you are morbidly obese. (And this often resutls in uterine cancer, etc).
4. He recommends I continue having a yearly pap.
That's it.
He said having BC doesn't raise my risk significantly (2 1/2 percent) for getting ovarian/uterine cancer even on Tamoxifen. And in his opinion the potential complications from surgery are greater than the risk of cancer AT THIS TIME.
So, I guess that's that.
I'm happy with it. My RO is the one who suggested I have my ovaries removed .. in an effort to be "aggressive." But the Onc GYN said, risks outweight benefit at this time.
Edited to add: The only scary thing is the whole Tamox metabolism thing has been a hot topic in the field...was even discussed in San Antonio 2010....
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Welcom Achpurple and Linda, We are getting quite a big group of triple positives. Achpurple, hope your RO is cute (like mine) . They tend to lack social skills and have no filter on what they say, but generally mean well. I finished Rads last week. The sunburn effect is going away and I actually feel comfortable in a sports bra now.
Linda I had a BC survivor at my school tell me that the first five years are the hardest with the mental emotional baggage. She is 12 years out and doing great. I'm getting so I don't obssess with it as much. Really it still seems surreal. library lil
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Herceptin #2 not too bad - had to slow the infusion so it took about 3 hours. Very tired later in the day and had a moderate headache, but woke up feeling quite "normal."
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Tonlee there is a test to see how you metabolize Tamoxifen but I don't think it's reliable. I too have heard you get a yearly pap unless you have some bleeding. We all need to continue with the yearly pap if we still have our "junk".
Sorry I've been MIA. Had herceptin/PT and a bunch of stuff on Tuesday. Felt pretty good. Yesterday was awful. Shingles are healing nicely but the pain has increased. I finally took my first 1/2 pill of Norco (first time taking a narcotic in my life as far as I know). It has help but still sore and now I'm spacey.
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achpurple--3 hours for the Herceptin to run? WOW! It took 45min for me yesterday and they're going to run it at 30 min from here on in. I get all three on the same day so it's already a long day. I can't imagine adding another 2+ hours.
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I get a yearly pap even though I had a complete hysterectomy 10 years ago - there is still the possibility of vaginal cancer so that is the standard for military facilities. Also, that is when my PCP orders mammo (I guess not anymore!) and does a general well-woman check.
My Herceptin is run over 90 minutes and I get TCH all in one day, every three weeks. It is a VERY long day - I think the quickest one so far was about 5 1/2 hours.
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specialK my TCH took 5-6 hours too. Herceptin alone is only a 30 minute infusion but the entire process has been 2 hours. If I have to see the doctor then longer. Big time suck!
so my exchange surgery has been moved up from May 27th to June 24th because of my shingles.
I'm not happy. 0 -
Lago It really sucks that your surgery will be delayed for almost a month
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lago - oh man - I hate that for you! Is that when they think the active virus will be dormant or do they want to minimize ill effects on your immune system so that it doesn't reoccur?
It doesn't really bother me to have a long tx day for TCH - what else would I be doing that day, right? I am glad that H alone will be quicker though because I will be back at work most likely and need to minimize impact on my co-workers. I have been gone since last Nov 1st so when/if I go back I need to do all I can to actually be there! The good thing is my onc office is just accross the parking lot from the blood bank!
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Lago - sorry to hear they moved your surgery! ):0
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lago so sorry you had to move your surgery, sounds like the shingles are a long time healing and surgery could make them come back even worse...hate to see you start back to square one with that one.
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I'm sure the issue is with shingles your immune system is compromised. This can effect how you will battle infection so I can understand holding off on surgery. The shingles themselves started to dry up on Sunday and are disappearing pretty quickly. The problem is the pain is increasing. The scheduler called me back at the PS office so she couldn't really answer my question other than "yes the doctor wants to postpone the surgery" Not sure why the nurse didn't call me back. I really would like to know what would constitute "safe" for us to go forward with surgery.
The June 24 date is the next open date.
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Lago- sorry to hear about the surgery and that you are in pain. The docs do book up this time of year. I scheduled my exchange surgery for 7/6- if that date didn't work or gets changed- already 7/15 was next opening- and that's probably long gone by now.
I do hope you feel better- shingles can be hard to get over for non-chemo folks sometimes. Take care- & thinking of you- hope you feel better soon.
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Lago,
Sorry to hear about the pain...I know it is bad..my husband had it...because it involves the nerves, it can still be very painful once the "rash" part is gone...at least it was for my husband...he was on-his-back-down for 3 weeks.....so I feel for you sister. (HUGS)
My Herceptin takes 30 minutes, tops. My TCH only took about 1:45-2:30? I can't remember..isn't that crazy? It's only been 6 weeks and I can't remember!!
The nurse from the Onc OB called today and asked me to call her back..I wasn't home and didn't get it until after office hours....wonder what they want....?
Guess I'll find out tomorrow!
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My TCH takes about 4 1/2 hours. But I'm thinking the Herceptin only will be a 1 1/2 hour event. I wonder why everyone has a different time frame for infusion?
Do you guys that have Herceptin only see the onc. every time? When do we get released from the onc.?
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I see the onc or NP every 3 months. I see my BS every 6 months for the first year then it goes to once a year. I believe it goes to once a year for my onc after the first year too.
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It is weird that infusion times vary so much! I get the impression that it can be discretionary on the part of the nurses once you have established a tolerance level for the drugs themselves. I know there is a lady that usually sits by me whose husband is always pressing for faster infusion times (I don't think he is having fun there!) although his wife snores through the entire process, so who knows. When I say entire process - I mean she starts during pre-meds until they wake her up to disconnect her port!
I wonder if when we move to H alone they can speed it up a little because you are not getting other stuff. If I remember correctly they did tell me that H alone would be no more than 1/1/2 hours total for everything - blood draw, etc.
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My Herceptin takes about 1.5 hours - for just the infusion. My nurses told me that they received a directive (not sure who from - drug rep maybe) that it should not be given in less than an hour. I'll try to remember to ask why that is when I go in next time. It has been a pain b/c between sitting in the waiting room, getting blood drawn, seeing the doctor, and then waiting for the blood work to get plugged in, it takes me about 3 hours every time.
I have seen my onc at every Herceptin treatment (every 3 weeks). After Monday, I'll start seeing her every 3 months for about 2 years. Then we'll move to every 6 months. I'll also see my BS yearly and my RO yearly.
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Hi All Thanks for the Livestrong Link.
Lago I am so sorry to hear about your surgery delay, the frustration of shingles then this. My heart goes out to you.
I have 3 days past TX 3 and this one was a doozy.. Anyone else get head acne? I have none on my face but my scalp is so sensitive and is I have acne all over it and the fatigue and nausea are at an all time high and so was the bone pain. I swear this experience is emotionally breaking me down to the point I am afraid I won't recognize myself when it's over. I am one of the people who was never really sick but the constant physical pain is wearing me out. I am trying to hang in there but it's getting tough. My recovery time is pretty short but the recovery is so intense. I average 3-4 days but they are a rough 3-4 days. I am sorry I had to rant, I am feeling pretty low and needed to get it out.
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nmoss - feel free to rant away, whatever makes you feel better! I am assuming that you are done with #3 of 6 right? That means you are half-way and that is worth a celebration, so woot-woot! What are you doing for pain control? Have you discussed with your onc - maybe you need more/different/better meds?
I have to say I am not recognizing myself RIGHT NOW and I still have two to go. That being said - everyone says that there is a magical point when we are done with chemo that it all starts turning around and we start to feel NORMAL - I am looking forward to that for sure. Just think - you are one tx closer to that!
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Hi Special K Thanks, I am 3 out of 6 but I really am seriously considering stopping at 5. I will try to keep my eye on the end point prize but it is tough. My onc suggested Advil, Motrin and finally Ultram. I took a few and they help with 70% of the pain but man do they put you out..Hard decision if I actually want to do something that day. Plus they make me nauseous but better than in pain I suppose. I, like everyone else just wants it to be over, just to live 1 day without having a slew of doc appts, special diets, co pays, headaches. stomach aches you get the idea.
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nmoss: I am 3 TX into a 4 TX AC regimen and my oncologist said on my Wednesday infusion "You are in the THICK of things right now. I normally don't recommend a lot of drugs, but if you need them, now is the time to take them." She recommended I take Ativan "as needed" to calm my nerves (they may have already given you a prescription for it as part of your anti-nausea meds), and since I still have like 30 Vicodin left over from my surgery that she said I could take "as needed" for bone pain.
I haven't had to use them often, but on the few occasions I have, they have been a life saver. You're right, they do knock you out, but those first 3-4 days after a TX, you probably shouldn't be trying to do terribly much more than rest and get comfortablythrough the rough patch anyway.
I'm not normally a drug-taking person. (My husband has to struggle to get me to take a Tylenol normally, even with a splitting headache.) But desperate times call for strong measures.
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