TRIPLE POSITIVE GROUP
Comments
-
Dragonfly I would contact your onc. This could be neuropathy. I also get some numbness from lymphedema too but highly unlikely since you only had 4 nodes. My 4 node side… no LE0
-
Omaz What did you do to treat the neuropathy once it started? Did the MO prescribe anything? It is a relief to hear that it is resolving-very encouraging!
Lago I thought of LE but ruled it out because I have the issue in both hands consistently-including the side with no nodes...I think my MO is on vacation- not sure when she returns but I'm scheduled to see her again on 8/30.
0 -
Omaz your neuropathy is getting better!? My left heel is still numb especially when it's humid. What are you taking for it?0
-
Dragonfly- This sounds like it could carpal tunnel to me, which starts as peripheral nerve compression but can progress to neuropathy. It may not be related to chemo at all - but rather a coincidence. Do you know which fingers are going numb? The index, middle and 1/2 of the ring finger is innervated by the median nerve. When you sleep, do you notice if you bend your wrists inwards? Most people do this, and it can compress the median nerve, causing those fingers to go numb. Go to walgreens and buy some wrists splints that have a metal plate on the inside of the wrists to keep the wrists straight and to prevent from bending them while you sleep. Wear these splints at night and see if the numbness improves. If it does not, I would make an appt. with a hand specialist, or even your PS. He will most likely get a nerve conduction study, maybe do cortisone injections, or even a carpal tunnel release if your symptoms don't resolve. Good news is, if you catch it early- usually it can be reversible without surgery. Hope this helps.
0 -
Hi Ladies, I am joining the ranks of the Triple positive. When I saw the PA last week she said that the cell test they did was elevated and I asked What? They did a cell search again? and she said, it was the test they did to see if my HER2 status had changed. It isn't super high, it's 29, but she said the fact that it went up means I might repsond to herceptin so if the ins would approve it (thought they might want a biopsy) they would start me on it along with the Xometa I just started taking. I had honestly forgotten all about the test, especially since the onco told me it was a long shot that my status would change, and also I was engrossed in finding out about Xeloda and Ixempra which was the combo he wanted to start and from all I was finding out I was pretty sure I did not want to do it. But now I get to do herceptin and the ins did OK it so I will get my lst one on Wed. And it may sound crazy, but I am looking forward to it since my last three chemos have failed and so did the hormonal treatments prior to that when we went back and tried them again siince some time had passed since I was on them before. I am really hoping the herceptin Xeloda combo will work for me. My liver tumors are quite large, my tumor markers are up to 3,306, I have bone mets all over the place, but oddly enough I feel fine and have been able to continue working and lead a pretty normal life. Since I am now +, this will open up some new treatment options for me.
Someone on another thread was talking about taking claritin before I get herceptin and it would help ward off SEs.....I did that with neulasta which made me feel like I had the flu the lst time I got it, but in general isn't herceptin a pretty easy drug?
I see a few of you talking about post chemo SEs.. I had my last halaven almost a month ago and I noticed when I looked in the mirror yesterday, my eyebrows are just about gone.....Great. Guess that means my eyelashes are next. Petty gripe I know, but Iook like an alien with no brows or lashes.
0 -
Thanks for asking about my neuropathy. I don't take anything for it except the L-glutamine which I don't take very much any longer. It is slowly getting better. It all got worse for a while after chemo but now it seems to be on the mend (thankfully!). The hand thing was strange. Doctor said that the neuropathy kindof goes in waves (he used his hands) and I noticed that as well. Better, worse, better, worse but each time the worse was less after a certain point. I still have numb areas in my feet, ankles and parts of fingers but it doesn't hurt and hasn't been tingling much anymore either. My balance seems better too. I am very fortunate that I didn't have painful neuropathy as some women do. I saw the neurologist early on and he gave me a script for neurotin in case I had pain.
Marybe - the herceptin may give you no trouble at all. If it does one choice may be to slow the infusion. That helped me.
0 -
Dragonfly: I finished chemo March 31st and the past month or so I have had that too. It doesn't wake me up but I also only sleep on my side and find that that arm/hand will get tingly until I move. It is weird.
0 -
Waving to Marybe. I too had no problems with Herceptin. I'm taking my 16th a week from today. Granted some people do say they get stiffness so who knows maybe me too. I did get nosebleeds when I was doing Herceptin with chemo but it was also winter. I think all those things played a part in that issue. Haven't had that problem since early spring.
So how often are you getting infused?
Omaz I too feel lucky that all I have is numbness in my left foot (and maybe a tiny bit in my right when it's really humid).
0 -
I have been wondering about LE....I had lots of nodes out. My upper arm is tingly and mildly achey sometimes. Especially lately. I still, 18months post surgery, have mild cording. I see no swelling, so of course anytime I think about it, I am convinced it's humerus mets. So I try not to think about it and massage it, then it goes away.
Marybh....congrats on new treatment options. I had no issues at all with herceptin. Have you looked into the neratinib trial? There are handful of similar drugs showing promise!0 -
Dragonfly1--I was thinking along the same lines as Christean. It could be a coincidence that it hit right along with everything else chemo throws at you. Or maybe it has been developing over time and the chemo just sped it up. I've had the same sort of numbness at night because I'm a side sleeper and I know it has nothing to do with the chemo. I was pulling my arm up to my chest and then turning my wrist so that the baby finger lay against my chest. I'd wake up unable to move or feel my arms.
I'm a committed side sleeper too so I had to train myself out of curling my arms. I used the wrist splints with the "spoon" that Christean described. They make it impossible to turn the wrists. I also started using a pillow against my chest and have one arm under and the other over, so that I'm basically sleeping with my arms out straight. I haven't had much of a problem since.0 -
Marybe I just had my first Herceptin alone infusion last Friday (Took only 1/2 hour whoohoo!!!) and it is such a relief!! No premeds,steroids etc....and I have had no SE's. It has only been 3 days mind you, but I have been told by just about everyone that this drug is EASY!!! so that is what I am going with. I am not even going to the Herceptin side effect board because if I read about it, I will think I will get it!
Good Luck to you, it will be a breeze. I think someone hear on the boards said that her onc. said it was like taking a tums compared to chemo.Question: Anyone have a low hct.and hgb after chemo was done? My hct is 29.8 and hgb 9.9. My NP told me this is normal and to cut back on the treadmill and to eat more red meat and green leafy vegs, prunes, dried apricots etc. How long does it take to return to normal? No wonder I am tired.
0 -
geewhiz I would get that checked out. Best to be measured before you get LE. Also if you do have early stage best to treat early. PT can help stretch those cords out. I had cording on both sides but really bad on the right. Right side had not be diagnosed with LE but left has. (more nodes left).
Bucky that is my diet although I don't eat red meat more than once a week. Maybe that's why I didn't have the issue.
0 -
I just had my first Doc w/herceptin yesterday. I spent the night in the hospital with no side effects. Now I'm home and I look like a tomato. Benadryl is helping with the soreness, but I'm still bright red. Any suggestions?
0 -
bucky317 - mine were lower than yours at the end of chemo. Took about 6 weeks before they started coming back up, and actually continued to fall for a few weeks before they started making a recovery.
0 -
Hey guys...checkin' in...we are so busy this summer I am wore out! Heading to Cali for a week on Sat and we've scheduled it full of things for the kids...whew, tired just thinking about it. lol
I went to a 25 yr HS reunion last weekend. There was a woman there with BC. I didn't get to speak with her directly...so how do I know?? Well, she came with a pic line hanging out of her blouse, and a totally bald head. You know in tx when you lose your hair and get shiny bald..(some of us anyway)...usually after the 3rd or 4th tx? That's how she attended.
No make-up. No hat. No hair. And a pic line hanging out of her blouse held in place with the huge white bandage shown to maximum advantage with the blouse/tank she wore. She could have easily tucked that sucker inside her blouse.
Am I being harsh? I couldn't even look at her without getting annoyed. She may as well have wore a shirt that said, "Feel sorry for me. I have cancer."
She's the reason people say..."T. You have breast cancer? But you look so healthy!"
Well, duh.
I can't stand when someone blatantly goes for the sympathy card.
(And I wasn't the only one who noticed, though I didn't comment. Her sister (twin) mentioned that they'd been out to dinner the night before and she was "fine" (wig, make-up, etc)...that she "has never looked so haggard."
Ok, vent over. It just stuck in my crawl for some reason, but I didn't say anything because it is obviously MY issue.
0 -
I should add...her sister mentioned she takes txs on Monday..the pic line was put in for blood work Friday and left in for tx on Monday..
0 -
HI oandtolivo
I was saying to my Onco red comes from Herceptin probably, but he said from Medrol (metilprednisolon - steroid) and I shouldn't worry about because I will look prettier with red chicks... It was only a few days...
Greetings
Usha
0 -
TonLee - I would have shared your feelings. It seems sad to me that she needed that kind of attention, I think I would have felt embarrassed that she was being that obvious. If her twin specifically pointed out that she had worn a wig and makeup previously, it seems pretty desperate to go to a reunion (where you usually make an effort to look your best!) trying to look sick. As a matter of fact, my avatar pic was taken at my DH's 30th HS reunion.
oandtolivo - I always turned bright red from the IV decadron (steroid) for a few days after tx.
0 -
Whew SpecialK. Just whew!
I consider you one of the sweetest women on this board, so if you don't think it was harsh...then I feel much better. I was kinda beating myself up for being so uncharitable...but it really annoyed me.
0 -
TonLee I agree. She was looking for attention. Sounds to me she needs to talk to someone. Everyone handles this differently but no need to make others feel uncomfortable at a 25 year reunion. It's not about her. I wore my wig twice. The weekend of my nieces bar mitzvah. Hated the wig but it was her day not mine. I didn't want the focus to be on me so I wouldn't even consider wearing a scarf let alone the "Darth Vader look" the night before or at the actual affair.0
-
I'm wondering if anyone could share some light on my situation. I finished TCH in July 2010 and H in March 2011. During tx I had alot of weakness of the legs/arms with tingling in both. I thought the strength was starting to improve in both, but I am finding I seem to be experiencing the leg weakness again. Stairs are once again hard to climb. I tried to 'run' to the phone the other day and took a few steps and thought my legs were going to give out. I do have a Dr. appt. coming up in a few weeks and am going to bring this up, but am wondering if anyone else has gone through this also? Not to mention the fatigue has never left me since rads.
0 -
TonLee - That is a very nice thing for you to say! I have tried to be careful when I go out in public not to be obvious about BC, because I don't want to put it on others. I personally don't like that kind of attention. I share it with the people I choose to, close friends and family, and sometimes not even all of them! None of my in-laws have seen me without something on my head. The response I usually get is the same one you do - you look healthy/good/great/not sick, whatever! That is the way I like it because it makes me feel better too. It seems like something must be lacking for her, which is sad. I think your reaction is normal - we come here to whine/vent/be sad/ask for support, because the people on these threads know what it is like, and how to help, but out in the world where people don't know what it is like to have BC we show our brave and strong faces, and we feel like that is what we should do.
0 -
Just to let you know I meet with a bunch of local ladies from this list. 6 years from now people will still be telling you how great you look "considering everything you went through."
At least one of women feels it's enough already… it's been 6 years!IsThisForReal I don't have those issues but you really need to discuss this with your MD. This could be something else. How's your blood pressure?
0 -
Thanks special k and lago!0
-
Thanks for replying Lago. BP was actually borerline high the last time it was checked, which is unusual for me. I normally have the 120/80 readings. I'll definitely be talking to me MD - CHF was something I didn't even consider to tell you the truth.0
-
Thanks SpecialK and Slousha. The red is much better today. I was afraid it was from the Herceptin, that means a year of red face
. I don't mind the chemo tan look, but this was full on tomato face. It's getting better so I can deal with a few days every 3 weeks. 0 -
oantolivo - did you get any steroids? Steroids gave me red face.0
-
Omaz I did get a cortisone shot. Did you change meds or just stick it out? I was really red for about 24 hours. We're talking tomato red Thanks for the help I'll have to talk to onc. 0
-
Yep, I was red too. I had dexamethasone pills and some in my premed infusion when I was having chemo. I just read that you are on docetaxel (taxotere) and the steroids are for that. Once you are done with that you probably won't get them with just herceptin. They give them with docetaxel to prevent fluid retention and other things.
0 -
My liver enzymes were high the past 6 weeks. From 30 to the 90s, but my MO said wouldn't think about cutting back my TCH dose until they get to the 115s. So I am back to blood tests every week. I had TCH #4 yesterday.
He quizzed me on how many Tylenols and pain pills I had been taking, and whether or not I had been drinking alcohol. No alcohol, and the only tylenol was 2 weeks ago. He said it is common for chemo to affect the liver.
Anyone else? Something I can do? Otherwise, I have found TCH not to be too bad at all. Thanks.
0
