Weekly Taxol group
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Hi all,
I have read through the last 10 pages of this thread and learned a lot from you ladies. Thanks for sharing.
I just had my 1st of 12 Taxol/Herceptin treatment last Friday. Besides some dizziness on Sat and a headache on Sun, I have been pretty good. I know it may change with more treatments, but I am so glad that I am not getting Taxotere/Carboplatin/Herceptin (TCH) regimen that my MO first recommended.
I have a couple of couple of questions that I hope a few of you ladies can answer. Are you getting only steroids (decadron) on infusion day or do you also take the oral steroids the day before and the two days after chemo. Originally, with TCH every 3 weeks, I was supposed to take the oral steroids, But when the MO switch my treatment to Taxol/Herceptin, he still left in place the instructions to take the oral steroids before and after chemo. I was really worried about taking this much steroids over a 12 week period. But on the first day of chemo, the Nurse Practioner told me that I did not need to take oral steroids with the weekly taxol. I was very happy to hear that but I am also afraid to other SEs if I don't take enough steroids. Or maybe my MO just overlooked this when he changed my chemo regimen.
Is there anyone who have done the weekly Taxol/Herceptin without a port? I started my first treatment without one and will probably get one put in before my third treatment. But I am on the thin side, esp. bony on top, so I am concerned about how a port will fit on my chest. I have good veins though (which may not last thru 12 Taxol treatments) and wondered if I can do without a port.
Thanks.
Nibaum
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Welcome to the group Nibaum. Sorry you are needing it, but it's a great place for information and support! I am on number 10/12 weekly Taxel + Herceptin. I only take steroids (decadron) on chemo day as part of my IV pre-meds. It's been sufficient, and I was even able to decrease the amount after the first few sessions. I am on the thin side (5'6 125 pounds) and have a port. It's definitely visible but works well; and most of my tops cover it up.
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I finished my 2nd Taxol and Herceptin today. MO discussed a port. I have decided to get one after my nurse showed me where hers had been years ago and showed me one and how they work. Since I can only use my left arm, I want to make sure my veins don't go bad after awhile. I had a little nausea while finishing up today. I ate an apple and wonder if that had anything to do with it?
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Nibaum - usually they drop the steroids for taxol - so no worries!
I hated my port but was happy to have it for taxol - herceptin usually goes for a year, you may want it.
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Thank you all! You confirmed what I thought about the steroids and the port. I just wanted to make sure for peace of mind.
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I went the whole time with no port and this Friday will be my last Herceptin treatment. It was not easy. I heat my hand and arm before treatment. Would have been much easier with port. MO told me at initial visit I had good veins and didn't need a port. Low and behold when I went in his office for one of my Herceptin only treatments he asked why I was heating my hand. I told him to get a vein. Sit down for this one he said "did you not want a port". You have got to be kidding me. I told him that he said I didn't need to have it and he said because during chemo it could cause infection. Well after 12 weeks I think I can manage every 3 weeks of Herceptin without
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Lvbugs - Congratulations on your last week! That is a light at the end of the tunnel. I am just starting on Thursday...Taxol X 12/ Herceptin for the year. Just want to get my first one past me at this point.
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Nibaum, I did 18 weeks of neoadjuvant Taxol (and six cycles of Herceptin/Perjeta) without a port. It was basically fine. Toward the end, my veins were getting harder to find, partly because we were only using one arm due to the risk of lymphedema. But it was very doable, and nearly six months later I'm still getting Herceptin every three weeks and the veins are healed.
No oral steroids at any point, only with the weekly infusions.
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nolagirl1126, you can do this. I made sure to drink my 12 glasses of water a day and did get on the treadmill five days a week. Walking only, and some of those days sometimes were shorter and slower. They say that exercise would help with side effects. I had mild SE and was able to work 3 part time days a week. So I'm chalking it up to water and walking.
All you ladies are strong women and before you know it these weeks will be over.
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Thanks Lvbugs! The water will be hard, and the exercise harder, but I will give it my best!!!
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Nibaum: I had only steroid IV day of taxol infusion, started out 12mg and then down to 8mg through the out.
Finished my 12th Taxol a week ago and took my port out the same day at the office (due to not healing port incision, that could be from chemo or steroid or I'm on the thin side too 5"3. 100lbs, plus I had implant...all of this add traction to my skin and therefore my incision never closed up, every time we stitches up and took it off, my incision just pop right open)
I just had my herceptin only yesterday with vein. not to bad, it's just an IV stick, and it's 24g needle. smallest. I also put ELMA cream on before the IV stick. Hope I can make it through herceptin til December.
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Hello All!
(ugggh I typed a response and then boom it disappeared so i will try this again
)I have a port; it wasn't presented to me as an option. I had 8 wks of AC and now 12 of Taxol so I am sure that is why I needed one. It is supposed to be an easy procedure but mine was complicated. I ended up needing general anesthesia due to movement and then post op when they did the xray to confirm placement it wasn't in the right place so they had to go back in under general and do the whole thing again. It was tough but now I am grateful to have it. The chemo nurses gave me the tip of applying the cream before chemo in a different fashion than suggested on the box: 90+ min prior to treatment I goop the stuff on the port area and don't rub it in and then i cover it with plastic wrap. it barely hurts when they access the port when i do it this way.
Re: steroids: I had the 3 days oral post each AC treatment as well as an IV of steroids during the AC infusion. With Taxol I am having a IV that is double the strength of the AC one and no oral ones. The weight gain I guess comes from this. the only other crazy side effect I get is the night of chemo I am totally wired and cannot sleep so I binge watch Netflix until I get sleepy at about 3:30. That is better than just laying there wishing you could sleep.
I admire those of you that can get in tons of water! I struggle; I try seltzer or a splash of juice but water just tastes different to me on chemo; its almost slimy.
I also admire those that can keep up with the exercise; I know its good for us. I do some walking but for the most part the muscle pain in my legs (and now my back as of last night) keep me from the gym.
The bloody noses are better with sudafed and the use of this spray gel i found in the pharmacy. instead of 4-5 a day now i only get 1-2 bloody noses.
Gotta love chemo though....the only drug that can cause diarrhea and constipation in the same day! Yikes how is that even possible!
Well I have #6 today; so half way through Taxol.
I thank you all for this group; it has made me feel more sane hearing the stories that validate what i feel and sometime struggle to get a hold of through medical appointments.
Be well and have positive days!
Sawyer
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Tesla - I have the same body frame as you as well as TE implants. I am afraid there's not enough room between the top of my implant and my clavicle. I'll ask the NP to evaluate me to see where the port could go at my 2nd infusion this Friday. I hope you sail through the Herceptin only treatments. If you are getting it every 3 weeks, that should give you time to recover between each infusion.
I should be good for about 3-4 infusions before a port may be necessary. I would like to be active as possible for the first few treatments anyway and the port would pslow me down for at least a week or two. I have been able to do some kind of walking or moderate workout an hour day and I think it has minimized the SEs. But its early days yet.
Nibaum
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For you ladies trying to go without a port, it is doable. Drink plenty of water and use a heating pad 20 minutes before the poking. That's what I have been doing to help bring out the veins.
Take care everyone
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Ladies - don't worry about exercising w/a port! It's NO PROBLEM! I was able to do weights, run, pushups, etc. The only thing I didn't do was burpees! I got mine on a monday and by Friday was up to a full run (chemo started on Tuesday which is the main thing that slowed me down).
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#6 completed today, I'm on the downhill side now! Did have to reduce the amount of Taxol, due to numbness in my hand. NP said if I still have it next week it may mean a delay. Noo!! I want my chemo!!
Sawyer the steroid keeps me up late, too. I use those lemonade flavored packets in my water after it started tasting bad to me.
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I just had my 1st of 12 Taxol yesterday along with Herception and Perjeta. Is it common to experience palpitations?
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I was wondering if it was the Taxol or Herceptin or Perjeta that causes a "chalky" mouth and changes in taste. Has anyone tried chewing on ice chips in order to avoid these side effects? I have my second treatment Friday with just Taxol and will try the ice to see if it makes a difference. This was the most annoying side effect after my first infusion last week.
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stotamom did you have an ekg before starting herceptin?
brandysands The Taxol affects your taste buds. Mine comes and goes. Mostly, it goes. I haven't tried ice chips but meant to today. Of course, I forgot.
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Ladyhumps- i had an echo done between AC and THP. Everything looked fine
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stotamom yes, I meant echo instead. Are you still having them? I would definitely let your dr know either way. Hope everything else is ok this today.
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stotamom- My Onc said low hemoglobin can cause you to feel like your heart is going too fast - your heart knows it needs to move X number of red blood cells and since there are less, it beats more - tho get checked out if it's excessive - i wore my heart rate monitor a bit to watch it.
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I have swollen glands under my jaw. Has been like this for a few day. I do not have a temperature. ??
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Its been awhile since I posted. Just had Taxol #5 yesterday. Started with 4 rounds of A/C. Taxol us a breeze compared to A/C. Have infusions on Thursday, Bone pain hits Sat and Sun. Noticed the eyebrows are thinning today. Right before I started Taxol, I picked up a cold, still lingering after 4 weeks. Everything looks good. A/C did affect my heart, so they are monitoring that. All in all, 5 weeks ago, I never thought I would make it. Now I know I will and can hopefully help others. I am working pretty much full time at a desk job. Work is very supportive. When I get tired, I come home. My MO and PC want me to cut back a bit. It's ALL good.
Thanks for everyone's support.
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Praline, I almost always had swollen lymph nodes under my jaw after chemo treatments, both A/C and Taxol. Seems to be just another response to what's happening but not something to worry about.
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I had taxol number 11 yesterday. I can't believe how fast this has went. I have slight neuropathy in my fingers and toes, but nothing too bothersome. Otherwise my main complaint is absolute exhaustion.
Can anyone that has already finished treatment tell me when you started to feel better post taxol?
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Follow up on Fluid Retention.. I am now 6 weeks post Taxol. My total fluid retention was 48lbs, some even while I had first started the lasix. When they first doubled my lasix from 40 mg to 80 mg the results were minimal. However the farther away I got from the last Taxol treatment the faster the FR started to diminish. I actually lost 22 lbs in one week however that wasn't without some very strange but not serious side effects. As the vascular surgeon had mentioned, the sudden loss of all that excess fluid affected my blood. To make a long story short, to those who do have FR issues, as of today I have lost 46 of the 48 lbs. They lowered my lasix last week back to 40 mg but still want me to remain on it for the foreseeable future right now. So, don't get discouraged as I did because the amounts of fluid I was retaining seemed to be extreme when compared to most people. I now know everyone and every case is different but in the end things are starting to settle down for me and I'm sure with possibly some slight timing variations things will return to normal for all of us. Hope this helps to relieve some anxiety for some others who might experience something like this.
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While at what was supposed to be my 7th weekly Taxol/Herceptin infusion yesterday, the nurse asked about side effects and I mentioned that my fingertips and the tip of my tongue were a little numb. She asked if my Onc was aware and I said no, I hadn't seen her since this started. The nurse contacted the Onc who decided to withhold my treatment for a week to see if the numbness cleared up. I knew peripheral neuropathy was a common side effect of chemo but I didn't realize it was such a big deal. I figured I'd get it and after chemo it would go away.
Has anybody else had this experience? What about the treatment I missed? Will they tack it on at the end or will I just end up getting 11 treatments instead of 12? They mentioned reducing my dose in the future. Will that extend the number of doses or will I just get a smaller dose for the remaining weeks?
Btw, my other side effects have been nominal except for the hair loss. I've felt pretty well and just a little tired. Heartburn has been an issue but I've always had heartburn. I thought it would be so much worse.
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I got a port before Taxol/Herceptin (TH) because my Onc said my veins would never last with the weekly TH infusions. I have poor veins that roll. Plus there's risk of lymphedema with all those needle sticks. I'm glad I got it for a couple of reasons. The rules around here say that only and RN can access a port which means on chemo day, since they only use technicians in the lab at my chemo site and technicians can't touch my port, I get to go back to the chemo bay to get my pre-chemo blood drawn where there are comfy recliners to relax in instead of sitting around the lab waiting area with the other two dozen people waiting to have blood drawn. The practice is I go to is very busy and serves all kinds of patients with all kinds of conditions, not just chemo patients. Another thing good about the port, I can numb it before I get there and don't feel the stick at all. I highly recommend asking for the numbing cream because the first week I didn't use it properly and that stick was pretty painful. The thing they stick in the port looks like a thumbtack and is pretty large. A nurse told me to squirt a blob of numbing cream on the port site about and hour before chemo and cover it with plastic wrap. They remove the plastic wrap and clean off the excess when I get there and I don't feel a thing. I have found that thicker plastic works best, like a piece of a ZipLoc bag. I cut one up and tape it on. Works like a charm.
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eamcpa They will tack it on at the end. Treatment #6 was a reduced amount of chemo for me due to numbness in my hand, lips and tongue. Mine was reduced by 20% and I was told there was a wide window for reduction so I was still getting enough chemo to be effective. If I still have numbness next Wednesday I may have to delay a week. I've already had to delay one week due to white blood cell count too low. I want to get this over with!
Glad your se have been mimimal for you. I am taking 150 mg ranatidine twice daily per my instructions. I had heartburn prior to starting treatment, too. I haven't had it since starting, some burping occasionally but not painful. This is the first week I haven't had diarrhea, wonder if it's the reduced amount I had?
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