TRIPLE POSITIVE GROUP
Comments
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TonLee - is this it? Found this one that you had linked to (I think) a few pages back...
Ms. Tori - I agree on the port - although I don't have a power port either...didn't realize what it was when I got mine.
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mstori - can you get your port done during your node surgery?
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Did anyone have side effects from Herceptin only? I've had H with chemo for four cycles but Wed was my first H only. I ran errands and cleaned house yesterday; nothing out butter ordinary. but today my legs and thighs are as sore as if I had done extreme exercising. Connection????
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MsTori - have to say I was so freaked out by the idea of a port, but am so glad I got it! After 4 AC, 12 taxol & continued herceptin for a year, my veins would be shot by now. I have a power port.
Kltb, im wondering the same thing about herceptin SE. I get it every 3 weeks and will be done in november but after each infusion I get achy legs and stomach cramps for a few days. Im also taking tamoxifen tho, so I don't know if its the herceptin or the tamoxifen. Maybe its niether, who knows.0 -
shore - maybe it is then. I always have a little stiffness and soreness in the mornings because I am so darn out of shape and need to lose weight etc but everytime I got up today it was crazy soreness. Not pain just aches. I haven't started tamoxifen yet. Joys to look forward to.
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Hello
I did not get a port but after my surgery and 4 ac and 12 taxol and now herception my veins are a little tough to get at and sore each time so now I wish I would have considered it. Had a really tough time getting my last blood draw so hopefully It gets better.0 -
soltantio my eyesight got all messed up on chemo especially when I was on the emmend. I did see the ophthalmologist right after chemo because I kept getting blood vein bursts in one eye. She almost prescribed distance glasses. I never had problems with distance. I told her I wanted to wait a few months and get another exam. Sure enough, retested at 2 months not only did I not need distance glasses, 1 years later I still don't need them.
My last blood draw was through my port. Even if you don't have a power port they can do blood draws.
Stiffness with Herceptin doesn't seem that unusual on these boards.
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sol - I got eye twitching and eye watering from the taxotere. I remember being at the computer and could hardly read from the combo of those two. The tearing if from dry eye and any onc PA suggested lubricating drops. It got better after treatment.0
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sol - I have read that you can get a clogged tear duct - just to be safe you may want to go to an opthamologist if possible rather than an optician.0
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I am going to ask for a power port, and hopefully they can put it in during surgery this Tuesday. I will call my surgeon Monday so hopefully he has time to pull it together. Thanks soooo much ladies. :-) and thanks for the well wishes.
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i was just catching up on some posts here.
kltb04 - i was going to ask the same question about herceptin - i have had 2 infusions alone now each 3 weeks apart after finishing T/C. I have such joint aches. I had the infusion friday and yesterday my husband and i were doing errands. I could hardly get out of the car. I looked like i had 100 year old arthritic joints. Once i get moving i am ok. I thought at first maybe i over did the cleaning etc. However, after reading posts, i believe it is from the herceptin. I am not on tamoxifen yet. Although, i have the script for it.
Mstori - i would strongly suggest getting a powerport with your surgery. All my labs and infusions have been through it. It is a little bit uncomfortable however, you get use to it. Plus it will save your veins for later use. Make sure you have a good experienced surgeon put it in though. The herceptin can cause some irritation to peripheral iv sites so if you have a port you will never know if you have irritation.
Also, the questions about taxotere. I too had the eye twitching and tears plus the runny nose and joint aches. I thought the eye twitching may have been from my magnesium being low. However, after reading here probably was the taxotere. I am 6 weeks out from having chemo and the eye twitching has stopped. Infusion number 5 and 6 was really bad. The accumulative affect. my hair is starting to grow back also. I am so happy!! Hemoglobin came up from 9.9 to 11.8 in just 3 weeks. Grapenuts and mvi with iron has really helped!! i am still short of breath a bit but i guess that will just take a while to get rid of. EF is still 60 percent since starting on herceptin. i have 19 more radiation treatments left. I do see light at the end of the tunnel!!
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sol - I am having problems with one of my eyes too - just a slight vision change in my left eye - I am waiting til I am all done with everything else before I go to the eye dr again though. I haven't had too many problems with the "Taxotears" some get but since PFC and losing nearly all of my lashes again, I have been getting goopy eyes in teh morning. And I get all my draws through my port.
lago - does LE risk rise with BMX even if you don't have nodes removed? My left side is still good at this point since my SNB is on my right side.
cindy - I have the eye twitching occasionally too - and it is in the eye that seems to stay more irriated. RE: the soreness/Herceptin, that is how I feel too - ok once I am going but getting up/down, in/out of car, etc...is agony! Not pain, just soreness.
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My eyes got blurry, teary, and I couldt see as well during tx. Three months PFC, I can see just ad well as before tx, I plan on waiting a bit yet and will then get checked out to see if I need new glasses, its two years for my prescription.
Cindy, my EF went down to 48%. It was 60% to start and I have a pacemaker. I am hoping it rebounds fast now that Herceptin has stopped.
Re power ports, I say get it it does help. However some places will not do MUGA s through the port and they put in an iv anyway. But it is hard for the to get a vein aftt tx. I have the use the back of my hand, hurts a bit more, but they don't have to keep trying so that's a wash! Much love to all0 -
I was not offered a port and I am glad. The idea of having that hole in my body for over a year bothers me. I had all lymph glands on the right taken so the wouldn't use my right arm and I finished all of AC and 12 Taxol/Herceptin and this will will be my third tri weekly Herceptin dose. I must have good veins for an old lady because only one of mine was damaged and that was when I was hospitalized for low white cell counts and a 'holiday' doc. mutilated me. But the 'vampire' at the onc. center was great. Always found a vein somewhere.
Peggy
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Peggy, I too do not have a port. I completed 6 chemos with herceptin and wednesday will be my 5th herceptin alone. I only had 1 time that my arm got black & blue due to a bad nurse,. I asked about a port when I first met with my MO,she said my veins were good so therefore she did not feel I needed a port.So far so good.. When I get the Herceptin alone there is not even a visable puncture mark..They use my left arm only. The sticks don't bother me it only takes a few seconds,as long as my veins hold up I will remain port free.. Love your name PEGGY, that was my mom's name...
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kltbo4 yes you can get LE just by having an MX because they do take out nodes along with your breast. It was actually my BS who told me that. Some women get trunkal LE.
In order to get MUGA with a port you might have to go to the chemo nurse first to get it accessed. That's what I did when I went for my 1st liver scan… only to find out that it couldn't be used because it wasn't a power port.
Port is not a hole. Here is a picture of mine from just after finishing chemo. It's a medical device.
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Ktl,
I just glanced really quick at the link, I believe that's a layman's summary, but if you want to take in the actual study, you can "google scholar" it and get the journal article itself.
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Soltantio the reason why your eyes are watery is because they are too dry. I still have to add drops to my left eye because it can get too dry and effect my eyesight. My ophthalmologist warned me the last time I saw her that a duct in that eye gets clogged. Granted on taxotere after tx 5 between the tears and the eye twitching I didn't bother to read a book. Looking down was the worst.
BTW just talking with friends today mentioning how "normal" I feel.
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Lago - thx for the info on LE. And TonLee I will look into the actual article/research.
Sol - my mom has the dry eye issue too with her Sjogren's and she uses systane for her eyes.
This soreness and aching is just getting worse. I guess if it improves over the next two weeks and then returns with the next Herceptin infusion then I will know it is the source.0 -
lago, they used my power port for the MUGA.
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They used my port for virtually everything they could. All blood draws, infusions, and for a couple of surgeries, I had it accessed in the onc's office and then went over and they used it for anesthesia, fluids when I had the kidney stone. It was a godsend as I could keep using my arm. It was a little freakish at first, but then I didn't even notice it unless my bra strap landed on it.
In fact, I only live a short distance from the onc's office, so a lot of times I would go over and have them access my port and pull the bloodwork the day before my infusion. That cut an hour off my time the next day at infusion as they had all the results and could get started.
My Herceptin SE's were more significant than the ones mixed with weekly taxol chemo. Based on advice from this thread, I asked them to slow it from 30 minutes to 90. That helped a lot. I was always tired a day or so after and just felt yucky. Some joint pain in the morning.
With taxol, I had the eye twitches and watering, but I had twitches all over. I could be asleep and my muscles would jump like crazy. I thought I might kick my husband in bed sometime, or slug him They were pretty strong.0 -
Is there a difference between a "port" and a "power port"?
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Fluff, I'm so glad you mentioned the twitching on Taxol. My body just jolts and maybe I am exaggerating, but it seems kind of violent. This morning I was twitching so much it started to upset me. It's more unsettling than it is painful.
My nurse told me my Herceptin infusions would be just a half hour, so I have to find my voice and address this nex month when I drop to just Herceptin.
I can't imagine doing this without the port.
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They are ports that aren't power ports. I have one of those non power ports. I don't know how I ended up with a non power port since everyone else I know at my treatment center got a power port. They can not use a non powerport for scans with dye because they really need to force it through and it would break the port. Non power ports can be used for blood draws though.
So be sure to insist on a power port!
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lago, you wrote "In order to get MUGA with a port you might have to go to the chemo nurse first to get it accessed. That's what I did when I went for my 1st liver scan… only to find out that it couldn't be used because it was a power port."
I think you meant it wasn't a power port. Just don't want people to be confused.
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vballmom-jolting is a good description. It all went away within a couple of months of finishing chemo though. It is definately unnerving. When it woke me up, I would wonder if I really jerked that badly or if I dreamed it.
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So how would you know if you had one? I just have assumed mine is a regular port because no one ever mentioned it being a power port.
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I have no idea which one I had. I did have CT scan with dye to check for kidney stones, and an mri to look at a lump that I had found, but they used my hand to inject the dye both times. Both were so fast and unplanned, they used my hand or arm.
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It hasn't been an issue for me thus far. All my pretreatment scans were before I even had the port and since then all my draws and chemo were through the port. And even had I needed something else done I still had my left/"good" arm. (SNB was on right side). But I was just thinking that MUGA I have to have in November will be after BMX. It would have been nice to have a power port to use. Maybe I need to ask my BS!!
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vballmom sorry I do that all the time. I fixed the post.
kltb04 they should have given you a little card with your port. It will say on there if it's a powerport
The only reason why I don't do sticks in either arm is because I had nodes removed in both.
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