Starting Chemo June 2017
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HapB - Call the nurse line about the port bleeding. You want to make sure none of the chemo they put in leaks out as it can cause major problems with your skin. It shouldn't bleed.
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When yoi say the port is bleeding whaf do you mean? Where the incision is or from thr port itself? Call your Facility ASAP. They can give you info that we can't. After end of Chemo a heparin block should ha e been done (Done after every time a port is accessed. For those of us who keep our ports post Chemo we have to have them flushed every 8 weeks and new heparin put in.
No you should definitely not be getting bleeding form a 'stick' any more than an draw.
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Well I'm back at a Day 1 for Round 2. While I was the last one out for Round 1 I was one of the first ones in for Round 2. My counts were really good after yesterday's blood draw. Vitals looked good so we were a go. Everything went smoothly. I did start to feel like I was getting a headache at the end of the cytoxan. I'm on the 1 hour infusion of that because I had a little sinus pressure the first go around. The nurse slowed it down a bit, but it didn't help. It wasn't enough of a headache to be a problem.
After infusion I had lunch out with my husband (Serious Pie & Biscuit in Seattle, look it up!). Then we wandered around the Bellevue Botanical Garden before picking our son up from school. I was exhausted by the end and went straight home after all that to take a nap for 2 hours. Now I'm up and starving! My head is a little woozy, but that could be from the hunger. I'm going to try eating what I can and see if that helps.
I made a quick little video to show that my hair was still holding on strong this morning. Then this afternoon my scalp felt a little weird and I ran my fingers through my hair to come out with not a handful, but lots of strands. So it begins. Good thing I have an order of a bunch of new scarves coming tomorrow
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Y'all, this port! It was placed this afternoon, but it has bruised me terribly. Is this normal to bruise so quickly? Right now it feels so uncomfortable. I iced and took 2 Tylenol. I need sleep, but if I have to have this in for a year, and it feels like this, I may lose my mind. I've cried more tonight than I have in well over a week. The nurse said being thin makes it protrude more, and I can see it and the catheter. I notice it even hurts when I swallow. Just praying a good night's sleep will make a big difference by tomorrow.
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KimPossible, I weigh over 200 pounds, and you can clearly see the entire port and tubing on me! My veins are just under the skin, apparently, and that's why. I'm really conscious of it, especially the ending, in my neck, because it sticks out so much. I don't know if it's supposed to go that high, but even when I wear a collared shirt, you can see it. I didn't have any bruising from the placement, but it's really uncomfortable sometimes - when I wear a seatbelt, for instance. Due to delays from test results (they keep finding stuff that has to be "clarified"), I haven't even started chemo yet, and I've had the port for a month already. Barring any unforeseen results, my onc says he's planning four rounds of AC, three weeks apart, so I can get this stupid thing removed approx 9 weeks after I start... I know people who've kept their ports, "just in case", but I'd rather go through the insertion again than keep it!
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Kimpossible. I am very thin also. I can clearly see the port in my chest. The way they did mine I have no neck incision though. I was bruised and sore for a day or so. Ice packs and Tylenol worked. I just finished chemo (AC/T) on Thursday.I want to encourage everyone starting chemo this month. I know itseems like an eternity but you are stronger than you think and you can do this !!!
I did not experience a lot of side effects - at least not major ones. My MO did adjust some of my premeds due to my size. I think that helped. I iced hands and feet every treatment and have no neuropathy yet. I think it worked. I got booties on Amazon for $25 that worked great. Just used cold packs or ice bags on my hands.
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Ciaci, My entire chemo protocol is 5 months, beginning this Friday. I will beg to have this removed when it's done and just reinsert later if necessary. Or as how I feel today - maybe only 10% better, I will just suggest they use every vein in my body. I am truly not loving this. Even the back of my neck hurts. Maybe that's from lying on the table for an hour with a neck roll kind of thing they put under me. I can't wait to get in the car later and see how this will fit with the seatbelt. My attitude is one of frustration right now.
I've read so many get it the day before or day of their first chemo. I cannot imagine. This needs to heal! I will say, that the residual pain I had on my cancer side has all but gone away so I can focus on the pain on the left side.
HapB, I am sorry, but at least that doesn't make me feel so isolated in this.
Y'all have a great weekend. Have to find a way to see the good in this. My nurse called this my lifeline. That's a good way to think of it.
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HapB, I'm sorry about your BP going sky high. I have actually good BP as a norm, but anything like this can certainly change that for obvious reasons. I would only assume that your face redness could be from the steroids?? The fact that you slept like a log on steroids is amazing! Steroids wire me to where I cannot sleep. ONE DOWN! Celebrate that!! Be well!
Happy to report my port placement pain has lessened. It's still there, but better. Seeing any improvement is enough for now.
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I got my port yesterday at 4p.m. It was placed in my left arm. Today it's a little red and swollen. But it was swollen when i left the hospital . Can i put ice on it? It is not warm to touch, no fever, no nausea. Just a little red on the outer edge of bruising. Ice or no??
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it didnt take long to put in the arm, I was put out and slept through the entire thing. Dr said it took about 45 minutes. As to why they put it in arm she said that's her preference. Works the same. Mine is not painful and i haven't taken any pain meds. Just a little red. Around the bruising site which is below the port.
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HapB
awe i am so sorry they put yours there. That sounds just awful. Perhaps they should have given you options and let you decide. I asked my MO if I could just not have one at all because I didn't want to have another procedure and he said no because if the IV infiltrates it could leave a chemical burn on the inside of my arm and an awful burn to the outside skin of the arm. So I said but we can pump directly into my vein?? I got the port yesterday but I'll post pic to show you how it looks. It's not painful at all. I had a itch today and scratched it totally forgetting it as there until i felt the stitches. My doctor also said we could take out the last week I get chemo after treatment. He sees no reason to keep in any longer.0 -
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The top right shiny part is the glue over the stitches, the round bubble she marked with a pen circles the port, and I bruise very easily. But this is 24 hours later.
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HapB - Have you called your MO? I can usually feel mine, but it's not painful. The pain pretty much subsided 3-4 days after it was placed. My pain was mostly due to having a 60cc tissue expander fill the very next day. It shouldn't be inflamed or bright red. This might warrant a call to the after hours nurse line
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TexasJ-Praying for you! Sounds like you have some good Dr's on it.
Friday was round 1 of DD AC for me. I would like to say I went in strong but honestly I was a nervous wreck. The idea of having these poisons put into my body freaked me out.
During the actual treatment I broke down and cried, after I had a weird reaction to the steroids they was giving prior to starting chemo. The steroid made me suddenly dizzy and my face went partially numb. Thankfully it only lasted a min or two. The nurse is going to see if they can piggy back it to slow it down even more next time. Unfortunately the reaction freaked me out and I cried when she brought out the tubes of adriamycin. The nurse was awesome though and we talked through my panic attack. After that the rest of the infusion went well.
The afternoon after chemo, I slept a lot. They gave me meds that made me groggy so could hardly keep my eyes open and slept the rest of the day. That evening I felt sick but starting taking the antinausia meds and was fine after that.
Yesterday (day two) I felt great. I kept up with the antinausia meds and had plenty of energy. Around 5 my neulasta went off but overall a pretty energetic day.
Today (day three) I feel more blah and tired but so far its not too bad.
I dont have a port because my veins are pretty big but seriously thinking about getting one. Going to see how next infusion goes first.
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HapB, My port pain is significantly better today-48 hours post. I am thinking I can make it. Bad bruising and a bit of redness, but there is no fever or anything like an infection. Yes, there is a small incision in my jugular, and you can surely see the catheter how it runs up from the port itself. Not the most attractive thing, but cancer "ain't" pretty.
I did ice mine Friday night and had to take Tylenol through Saturday. Haven't had any today, though.
Please don't be scared. I'm going to try to add a picture. On my iPad, so may not work. I think redness is normal. I hear you get used to it.
Susie, I had a friend with a port in her arm last year, and it failed her. My ONC discouraged it because veins are smaller in the arm and can cause more blood clots. Don't worry, just be aware if something doesn't seem right. Let them know right away. Honestly, we all hear different things from different doctors. That's why they call it "practicing" medicine. 😊
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HapB, In the name of sisterhood I humble myself and send you this to see how yours compares. Mine was done Friday. I have been sitting out on my covered patio for hours, so it has the best possible light.
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kim and HapB,
Both of you are very brave re port. I find it prick pain is least if I glob.EMLA cream about 90 min before est prick time and one more glob around the port area about 15 to 20 min before port access.
Mimi
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HapB, You lookmore bruised than I do for sure, but the yellow is typically a sign of healing, I thought. I am so not a medically-inclined person. Did you call about it? I must say I do not hurt like I did, but I have a pretty high tolerance for pain. One thing I am hearing about is if you have concerns along this cancer journey to tell your care team. That is what they are there for. Don't risk anything.
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HapB Ouch that looks painful. My arm is a little more bruised today, I bruise very easily? Do you bruise easily? Im hoping it just looks bad but everything is working properly for the both of us!
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HapB, I took mine down, too. I guess I could have sent you that privately. Still learning. Please calltomorrow if you don't feel better. I have my chemo orientation tomorrow, so I am going to let the nurse look at mine and make sure it all looks normal to them.
Rest well.
Susie, Sorry yours feels more bruised.
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HapB, I hope today is a new day for you with great improvement! I woke at 2, trying to turn on my port side and got the worst cramp in my neck. So, there's that now. I had to get up and get an ice pack and finally make my way to the recliner, which is a much more comfortable position than being flat. About to shower, so I know that hot water will help.
I will check back this afternoon, after I get back from chemo orientation. I think they are going to do a blood draw today, and the thought of that first prick in the port makes me want to cringe!
**Probably my silliest question yet. Do y'all think I would be able to go horseback riding on Sunday? It's a trail, but I know how bumpy one can feel on a horse. Wondering if it is doable or even wise?! I will ask my nurse today. She deserves a good laugh, I guess.
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I've had my port for a month, so it's all healed, but still bugs the heck out of me at odd times. I'm still sleeping in a recliner; laying on my right side presses it into my neck, and laying on my left side seems to pull at it. I can't sleep on my back, because I move side to side a lot. Can't sleep on my stomach, because of the port and lumpectomy incision. Whenever I tense for any reason, it bulges out of my neck - I think it's laying over a tendon.
Most annoying of all is that I STILL don't have a start date for my chemo ("something" on one of my vertebrae may or may not be cancer; too small to tell without a biopsy, and too hard to access for said biopsy - they're still trying to decide what to do), so it all seems so pointless, so far. Once I start to DO something, I hope I'll at least feel pro-active; this waiting around, doing nothing, is for the birds.
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HapB, Are you feeling better today? I didn't sleep nearly as well last night as I did on Saturday. I'm about to take a nap! The nurse seemed unsure if I should try to ride horses, so I am taking that as a "no." She asked if I did it often, and I told her maybe once a year. So, I will forgo it. Plus it is just 2 days after my first chemo - to answer your question - this Friday.
Ciaci, I am sorry you are still waiting. That is hard to do, I agree. I went to the recliner myself this morning. I could not get comfortable on my back last night, and either side is a no. This is tougher than people realize, but it still could be worse. Hoping you get answers very soon!
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KimPossible - Your ambition of horseback riding tickles me. I love that we all want to make life as "normal" as possible and do what we once did. I went to see Wonder Woman the day after my 2nd chemo (Friday) and then spent the rest of the day in bed (and nearly fell asleep twice during the movie). Yesterday I gardened for all of an hour then slept all day. Today I did paperwork on the couch, got my nails done and took a 2 hour nap. by Wednesday I'll be able to go back to work. For me the first 5 days are rough. The fatigue is unlike anything else
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HapB and KimPossible Sorry to see you are still having pain. Mine isn't painful but the bruising spread pretty far. I called the doctor and she said that's normal. Perhaps it's just me but I really don't like this foreign thing in my body. It comes with a whole new set of complications and possible risks such as blood clots. I didn't consider myself an anxious person but now with every chest pressure I think I'm getting an embolism. I am dreading the first time they stick the port, how much will it hurt and will that cause more bruising? I feel like we removed the cancer with the lumpectomy and this chemo is to prevent it from recurring but i feel I'm losing who i am now. Since my port is in my arm I feel it anytime it rubs against my clothes or sides. So there's that discomfort along with the other arms pain from the SNB, so the cancer in the breast is removed but let's beat up the arms! Ugh I just want it over.
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HapB,
If you're having problems catching your breath and you have chest pains, those are symptoms of blood clots in your lungs. If you want to know whether you have blood clots, you will have to go to a hospital or minor emergency center for tests. If those symptoms don't improve, please call your oncologist's office, and see whether it is worth a trip to a nearby medical center.
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HapB
Sorry to hear you are having so much trouble with your port. Mine was uncomfortable for a couple of days, but after 2 weeks I sometimes forget its there. Will have #3 Taxol/Herceptin on Wednesday. Hope it goes as well as the first 2. All hair intact so far, thinking any day I will wake up and see a bunch on the pillow. Hoping to make a decision about the wig this week, waiting for my sister for a second opinion. Spend the weekend at the lake, came home about noon. Was able to vacuum, change bedding, do dishes and get packed. Mowed lawn for a couple of hours this afternoon, and hubby grilled some burgers for supper. So far, so good!
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HapB. the signs of a clot are chest pains, shortness of breath, bruising getting worse. I googled side effects of ports and embolism came up. It is scary. I have to have 16 rounds of chemo . The first will be every 3 weeks for 4 rounds(12 weeks) then every week for 12 weeks. Im just as fearful as you!
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HapB I completely understand, do you have friends that will check on you? Even if it's just a text that would give you some comfort. I live in Pittsburgh Pa but if i lived closer to you I would meet you for lunch! I have plenty of friends but no one knows what it feels like and the concerns that go with it. It's nice to have friends who know what you are going through.
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