Weekly Taxol group
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I was never offered the cream, but maybe they use smaller needles at my place. It's just a quick pinch and that's it. I also was in the hospital or a couple months as a kis and had daily blood draws and IVs so I think I also am pretty immune to needle pokes. They really just don't bother me.
The lack of taste annoys me too. I lost another pound this week according to RO's scale, so I'd better eat up because MO will not be happy next week if I have lost more weight. He keeps better track of my weight than my OB docs did while I was pregnant! I just am not hungry and food tastes blaah. I have literally been setting my phone alarm to remind me to eat some snacks because if I am not hungry, I don't think of it besides when it's time to feed the family! My appetite has definitely been affected more the past couple of weeks. It was not as much of a problem a month or so ago. I suppose it could be the heat too; I never am as hungry in the summer. But for now I'll just blame it on chemo.
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I find myself wanting spicy food. Everything else tastes blah.
I have never had issues with my port other than that whole blood clot in the heart little thing. Mines in my arm. Does anyone else have it in the arm? It does protrude a little. I cover it with a bandaid unless I forget. My friend saw it the other day and looked horrified. lol
I wouldn't let them go in without cream. I forgot one day and I was a little panicky. But mine hurt for a LONG time when I first got it put in.
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trvler - they did an ultrasound in the office. My surgeon had an ultrasound machine in one or maybe two of the rooms and he did it during my appointment. It did make going to chemo a little easier this week. I still have 6 more Taxols so hopefully it will shrink more. I was borderline for being able to have a lumpectomy before and no I can.
As for pain when they insert the needle when I had my first port it used to hurt so so bad even with the lidocaine cream. It also hurt horribly when they pulled it out so bad that I actually screamed in pain once. Not a pretty site. Now that I have my new port it barely hurts in or out. I wonder whether mine was not placed right or something.
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My port is painful all of the time. My MO ordered a port study to xray it and see if it had moved but all is well. Because I have TEs, the port had to be put in higher and the TEs put pressure on it. Just 3 more months and it can be deported!
I use Arnica gel after treatment and fills around the port to keep swelling down. MY PS told me that both ice and heat were not good for the TEs.
I am extremely tired and dizzy and nauseous this week. I don;t know if it's because I pushed earlier this week and went out or because I can't eat or just because. I haven't left bed today.
Just 3 more months....
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2 weeks PFC and I still feel nausea and run down. I had a bad episode(s) of diarrhea and vomiting that landed me in the ER for fluids but I think that was from the Herceptin/Perjeta combo. I don't know if I can do that every 3 weeks - it was awful!!! Maybe it was just because I still had some Taxol in my system? Dunno but it sucked! I'm supposed to be resting up and healing/recovering for surgery - not going to ER severely dehydrated grrrrr....
Bekah
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Another vote here to mention port issues and get them checked out. Mine has been hurting during infusions so I had a dye study done today. Well, turns out the catheter has flipped (so it's pointed up instead of down.) I have to go in and see my surgeon tomorrow. (It was also randomly sore, and when they did the saline flush, it felt like bubbles were going up the base of my skull. Or, in reality, up my jugular.)
Yay for shrinking tumors!
At my MO appt Monday she mentioned that my weight — which is higher than it's ever been aside from pregnancy — was "stable," and I laughed out loud at her. Less mac 'n' cheese! More running!
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Bekah, That Perjeta seems to cause diarrhea for a lot of people. I hope they can find something that works for you as far as controlling it.
My port sticks out so far that you can clearly see the 3 tiny "bumps" from across the room. There also is apparently a little plastic line that must ridge the edge of it. The nurse commented on how she could see that and if it flipped, they'd be able to probably see any writing on the back of it. Nice. 32 days until that sucker comes out. 32 days, 3 hours and 18 minutes. Not that I'm counting.
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Ninamary - they can give you something to help with that burnt mouth feeling and the mouth sores. I had to have it early in my chemo's. It helps but takes about a week. Make sure you tell MO or chemo nurse about it. And YAY your end it in sight!
Taxol has not been as easy as I expected. Always some complication. My oncology nurse said it can be different for everyone.
I feel lucky to have a picc line rather than port. No issues with it.
Good news is I actually had an appetite yesterday. I had pizza and loved it. It sat kind of hard on the stomach, kinda feels like you ate a rock however mmmmmmmmmm I finally enjoyed something. YAY!
Cathy
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I am counting the days, too, K. Aug 18th!!! I am also counting the days until I can stop these gd injections. I wish I could figure out why sometimes it hurts A LOT and sometimes not at all. (Aug 16th)
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#7 today!!! I am going to tell the NP about my port feeling off this week.... but I am sure she will dismiss it as anxiety.... I told her one time that I was having a heavy chest feeling..still have it every once and a while.... and they did an EKG. It was normal and they said I was prob just "anxious" LOL Believe me I tell them every ache and pain and they mostly say..... Your fine, if It keeps happening let us know.....
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Bekah - I think our diagnosis is similar - how many perjeta treatments are you getting? I was only to get 4 (every 3 weeks during taxol) - are you continuing them?
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Ugh. I got that, too, Leigh and I had a blood clot in my heart. Did you see a cardiologist?
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No Allison, they really just dismissed it. I have stayed pretty anemic through al this and that is what they blame it on. It doesn't happen all the time.. that heavy feeling, like someone is sitting on your chest.... but it happens every once and a while. Now I am more worried about this port... now it seems like I can feel it in my throat... where that line is....... neverending with this shit rt????
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Is your port on the left side, Leigh? Mine is and I think it has to jump through some extra hoops to get where it needs to be from the left side. I had really noticeable feelings in my throat for a good two months after I had it put in, and I still feel it occasionally four months later.
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Nope.. It's on the rt side. I did feel it a lot in my throat when I first got it.... then it went away and I really haven't even noticed it until this week... that's why I am finding it strange. To go from not even realizing it's there to always noticing some type of uncomfortableness is just unusual to me!
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That's tricky because with 5 more to go, you might not want it removed. When I was having concerns about my heart and had 4 left, my MO said we could take it out because TAxol is easier on your veins than AC.
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Originally I was only supposed to get 4 Perjeta during Taxol but then my MO said that if my insurance will continue to approve it, he wants to do a full year along with the Herceptin. Says that the studies are very promising and in general they feel it will become the standard of care...the studies just haven't officially caught up yet. My second opinion MO at UCSF agreed and gave me the same rationale almost verbatim.
They both said if the diarrhea is too bad we will stop the Perjeta.
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congratulations...I'm sitting here getting #7 right now, I'm. So excited. Are you working full time during your treatments? I'm going back to work August 31.
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Now I know why I've been achey-er and wayyy tired... I have strep throat! And my treatment is postponed this week. Oh, what's one week longer? At least now I know why I haven't been able to stay awake or do anything. Going to ride the antibiotic train~
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That's a bummer, Karabesque. I hope you feel better soon.
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Thank you Trvler! One step forward and two steps back it seems, sometimes....
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Yep, I hear ya!
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I just found this website and this article about how we should eat on Taxol. I feel like I struck gold!
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Leigh - I had a taxol infusion in my vein once. They grabbed the wrist vein and it was no problem. It just takes a little longer to finish the chemo. A girl I met there port was clogged in infusion #9 and they wanted to remove/reinsert and new port and she said "hell no". They finished the final 3 through her vein.
I finished taxol yesterday. Yea! Though my MO is keeping my port in for another two weeks. What the hell? I see no need for that. I don't have a follow up with her until after the port is removed. Being triple negative I'm done with chemo and it's off to rads. I just don't get it.
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WOOHOOOOOOO Mary!!!!!! Congrats!!!!!
Kara, I hope you feel better, strep is the worst!
Well the NP did take my complaints seriously and had them check my port for clots...... NOTHING, NADA... all good. So now they really prob think I am just "anxious" lol But at least they checked it. So I guess I have to chalk it up to another glorious SE... muscle aches in my port and surrounding.. JOY!!
Today is my great steroid high day... LOL it will all head down hill tomorrow afternoon
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Just read your link Kara on what to avoid during Taxol.... as I sit at my desk and sip on a cup of coffee.....It says NO COFFEE!!! LOL Woops! I couldn't stomach coffee on AC but Ive prob had a cup a day since starting Taxol.
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Thanks for the link Kara. I, too, have been drinking coffee when I can. Oh well!
Mary, congratulations!!
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I have a cup a day.
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I drink black tea in the morning. And that is the one thing I refuse to give up. Anything else, I can understand but my tea is the one ritual that keeps hopeful. And that is more important and beneficial than any negatives.
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fish oil and grapefruit too???! I take fish oil every day and grapefruit I loveeeeee. Plus coffee. Ugh.
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