TRIPLE POSITIVE GROUP
Comments
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Jennt28 - I'm having all those same symptoms just this past week - their onset coincides with the fact that my hemoglobin dropped into the 9's recently. (I'm only 2 TCH's in) I've been telling myself that these symptoms are due to the anemia, since the heart compensates by increasing your heart rate and you get short of breath because of not enough oxygen. Hopefully that is all that is going on for both of us and this gives you something else to possibly pin your symptoms on besides Herceptin heart damage. Here's hoping to a good MUGA scan for you!
P.S. Do you know how low your hemoglobin is? I have been told they don't transfuse unless you are under 8 OR if you are in the 9's and symptomatic (severe shortness of breath, etc.).
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Hi dancetrancer,
My haem level is only just below normal at 115... They said my iron level was low but I forgot to get the copy of my labs when I left. I'll be back there tomorrow for chemo and will pick it up then.
Yes, my MO did say that my issues could be because of the low levels but although they are low they aren't hugely low.
I'm worried - but not panicking. Will try and relax and enjoy some time off to look after myself.
We can worry together :-) Jenn0 -
Jenn - thank you! I did not know the difference! I hope you level out and can be back on track soon!
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My BS insisted on general anestesia to put the port in and take it out. I was not happy about that. I loved having the port. I also hated having it there and am glad it's gone. I had the emla cream, but I put it on way too early for my first round. They were running behind and by the time it was my turn it wore off. When I saw the big, hook needle I almost passed out. Then they counted 1,2,3, and boom it's in. It was not bad at all. Believe me, after surgery that little stick is nothing. I also had a oncology nurse in training try and access it once. On her fourth try I yelled at her and demanded my usual nurse. It was the only time during tx that I was difficult.
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If any Florida gals go to Moffit could you PM me? I am moving to the West Coast in June and am debating switching over. Driving 3.5 hours to Miami sounds exhausting.
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Jennt - they must use a different scale for hemoglobin in Aust vs USA. Well, still hoping your MUGA comes back good! Definitely enjoy the time off!
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wasgij96 There were a few gals that started chemo with me back in october 2010 that did the same combo (but no Herceptin because they weren't HER2+). They did fine (and currently one has hair touching her shoulders, and that's with some curl!)0
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There were a few chemo nurses that I never felt a thing. Now when I get it flushed I try to sneak in (by pass triage) and get my old chemo nurse to access it. I don't even need the emla cream.
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SunFlower: I'm in Melbourne and don't go to Moffitt (had all my txs done in Vegas where I lived at the time) but there is at least one Moffitt girl on here. Big percentage of the Melbourne girls go to Moffitt...it is TOPS. You'll love it and definitely no need to drive back to Miami (born and raised there and would hate that trip). Good luck!
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Jenn the woman next to me in the infusion center was hooked up to a bag of blood when I left. My iron was low last week but they just told me to eat all the things that raise my cholesterol. It is a rock and hard place scenerio.
Wasjig that was my routine. It was not easy but I had it easier than others. I would get my infusion on Thursdays. They give lots of steroids and I would feel very peppy (even to peppy sometimes) on Fri. and Sat. By Sunday I would start to fade and by Monday was what many of us call "the crash". Gradually each day would get better until it was time to do it all over again. Don't plan much for the 45-10th days. Good luck.
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I'm not sure if it was this board or another one I am on but someone mentioned a salve for itchy watery eyes that worked better than liquid tears. Does anyone know the name of that salve or the active ingredient?
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I use GenTeal eye GEL. It works great. Goopy for a few minutes, but then you can see fine.
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My power port is in. Other than the nurse not being able to find a vein (mine are invisible, I guess!) the procedure itself was easy. Now it feels really uncomfortable and I can hardly move or use my arm without pain. I know it will only be a few days, but it is no fun.
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Take it easy vballmom.0
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You had yours in your arm? The usual frequent place is the chest - I imagine your arm will hurt a lot you poor thing.
Jenn0 -
No, it's in my chest but when I move my arm it really hurts.
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Ohhhhh, I can't remeber my arm hurting. My chest and neck hurt though and it was all a bit of a blur with the whole shock of everything happening so fast. Stupid cancer...
Hope you feel better soon - when is first chemo? EDITED: Just saw that it's the 21st. Good luck - it will not be too bad with the port. Any chance you can get some EMLA cream or patch for this first one as you might still be bruised?
Jenn0 -
Yes, they gave me a sample of EMLA cream because I asked. Thanks everyone for that tip! I am also getting Emend, and three other prescriptions I have to pick up. While I was at the hospital today I asked to see the infusion room and the head nurse showed me around. I am feeling so much more comfortable now. She said they will start me in my own room and it has a private bathroom. They provide lunch, too.
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My arm hurt for a couple weeks after my chest port insertion, my shoulder use to ache during the infusion, when I asked my surgeon why I was getting so much arm pain from my port he explained that he couldn't access my subclavian vein (just kept hitting my ribs) and used my basilic vein in my shoulder area, I could feel the tubing just below my collar bone. My port was really uncomfortable for the whole time I had it, it was sutured really tight and Gave me grief. The nurses often had trouble accessing it as well as it sat on angle sometimes I had 3 sticks, wish I used emla but being an infusion nurse Educator I don't recommend emla cream due to increased risk of infection, so had to practice what I preach!! Don't worry the risk is very small if they clean the area well.
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I put on the Emla at home an hour prior to my appointment and then put a piece of plastic wrap on top of it - be careful of the seatbelt as it can make the plastic slide to an alternate location - my onc nurses also used the spray and I never felt the stick.
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Agree with special k. I used press and seal though. And dont rub it in. Put a thick layer on and then cover with the wrap. The nurses should clean ot very well before they inject. I figure the risk can't be wose than the body lotion I was using that same day. Lol
My te fills were really painful, and I finally started using emla for those also. Made a big difference.0 -
I still have to get my port flush and most of the time I forget to put on the emla cream. The stick isn't that bad but if you get someone who is good at it you don't feel it. I was never overly impressed by the emla cream. Maybe I didn't slather on enough.
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I didn't use any cream or anything either. It doesn't hurt like a traditional shot, it just stings a little and then is gone. Heck the neulasta shot was more painful! (And it really didn't hurt much either...kinda like getting barely pricked my a rose thorn when walking past a rose bush.)
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Agree with TonLee... never got any Emla cream and never had a problem with the sticks. Not even a 1 on a 1-10 scale. Much, much better than having to access a vein each infusion!
Did I tell you all how I hate rads even though they're my friend?
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Ashla,
I hated Rads more than chemo! By the 3rd week I was literally wiped out. Since everyone gets a different amount of radiation, not all women experience the SE the same way, so don't feel bad if you are tired, sore, whatever and the lady next to you in reception is breezing through.
There were much older men getting rads at the same time as me...with no apparent SE.
I thought, geez, how wimpy and I? Then my RO told me I was getting ten times their dose. HELLO! That made sense.
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What 1" needle? My needle looked more like a giant push pin. Seemed like a wider circumference but short in length.
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Oh right I have the kiddie port.
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I used to put on some Emla cream for the first couple of chemos but then would forget and it never hurt much to have the needle except for one nurse couldn't access the port and used the 1" needle and said I should tell all other nurses that I needed that size. Other nurses said I didn't need that, just the standard size. Each one would count to "3" so I would know when it was going in and he/she would tell me to take a deep breath. Eventually I didn't need to tak emuch of a breathe because I didn't feel it and never felt it when they removed it.
My onc wants to remove my port now. Can anyone tell me what that will be like? Is it in the hospital or out patient and how long does it take? The surgery to insert the port took a long time because I have tiny veins which they hadn't known beforehand. I hope that won't be a problem for removal.0 -
Fitz33 I had my port removed about a month ago. It was unbelievably easy. I had it done in the doctor's office and he gave me a shot of Lidocaine to the area and then made a small incision in the same place as the original incision and popped the port out. It was a rather weird sensation to feel the catheter being pulled out but there was no pain at all. Then he stitched the incision. It took no more than 15-20 minutes at most. The stitches were removed one week later. Honestly, it may the easiest thing I've done so far. I also had no pain following the port removal because there is so little trauma to the area. I'm just using Vit E on the incision daily and it's healing nicely.0
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Thanks dragonfly. I feel better now knowing it won't take long and I'll be prepared for tghe weird feeling having it taken out. I had really wanted to keep it in and get it flushed but my onc said I need to get it out now so she's been so right in everythibng else I'll go ahead. It will be strange not having the port. Does it feel strange to you after having one for so long? I think I'm going to miss the resassurance of having it in me.
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