Questions on port and weekly Taxol

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Honeybee68
Honeybee68 Member Posts: 34
edited July 2018 in Stage IV/Metastatic Breast Cancer ONLY

I will be starting THP as soon as I can get the port placed. Is the port placement fairly easy? Could I do it with just a local? I dont want sedation. Am I crazy to want to try it with just a local?

For those who have done weekly Taxol, how long does the infusion take when it is just the Taxol? And how long does it take when it is all three (THP)?

How hard was weekly Taxol for you to tolerate? Did you have days when you just couldnt do anything? Do you have tips for how best to deal with side effects?

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  • virginiab
    virginiab Member Posts: 205
    edited July 2018

    I am near the end of weekly Taxol treatments for angiosarcoma on my breast, so my situation is different from yours, but I can tell you what I know.

    My port was placed with local drugs only. The heart surgeon said there would be some discomforts, and there was, but it was brief. I don't thing they even offered an option for more sedation than that, but different hospitals seem to have different protocols.

    The Taxol has been pretty easy to tolerate. The drugs they use to pre-medicate before the Taxol seem to cause more side effects than the Taxol itself. The intravenous Benadryl knocks me on my backside. For a while during or just after that infusion my speech is slurred. Then I am sleepy and often doze off briefly in the chair. By the time we leave, I am just more tired than I would otherwise be at that time of day and often take a nap when I get home. The steroid they give makes me feel pretty perky the next day, and then noticeably wears off between 24 and 36 hours after the infusion. This is another nice time for a nap if it is convenient, but I would be okay without the nap, too.

    I did not have days when I couldn't do anything. I worked for the first 16 weeks of this and only took off the actual day of chemo. I averaged 8-10 hours of work on the other 4 days of the week.

    Where I get my treatment, it is usually at least 2 hours before they start the Taxol drip (checking in, ordering the drugs from the hospital pharmacy, waiting for the drugs, then starting the pre-meds and waiting for them to kick in) and it takes about 30 minutes (or is is 60 minutes) if I remember correctly. THis is the time when I am a little dopey from the benadryl, so may not be the best approximation of time.... The first treatment takes longer. In all, it was generally 3 to 4 hours total time in the infusion suite.

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  • LoriCA
    LoriCA Member Posts: 923
    edited July 2018

    I had twilight sedation so can't comment on doing it with just a local. Twilight was good for me, eliminated my anxiety over having them cut into my carotid and jugular, but I was in rough shape to start and not looking forward to having them cut into me.

    THP for me was about 5.5 hours. Might be shorter or longer for you depending on how your MO does things. I started with blood draw and vitals check. Had a consult with my MO while waiting for the lab results. Infusion usually starts within an hour of my arrival. Started with pre-meds (anti-nausea, benadryl, and steroids). Monthly dose of taxol so that one was longer than yours will be for a weekly dose (I did weekly taxol before switching to 3-week THP). Perjeta and Herceptin should be at least 60 minutes each (SEs are much worse if they only do 30 minutes, many do 90 minutes each to lessen SEs). Tiny bag of saline to flush between each one, and I would usually have a large bag of saline to keep hydrated when I had Taxol. It's a long day.

    The benadryl didn't make me tired. The steroids made me feel like super woman, I was hyper and starving! It was hard for me to learn how to get any sleep the night after my infusion and in the beginning I would often be awake for 48 hours straight. One thing I did learn quickly was to not overdo things when I was in super woman mode because the crash two days later was a lot harder.

    IBC took me down hard and fast (they didn't think I would make 2 months) so it's hard for me to separate what was SEs from the chemo and what was due to how much damage the cancer did. Other than the two days after my infusion, I practically slept 'round the clock the first few months, but I was also on morphine and fentanyl and my body was in healing mode. Weekly taxol only had a minor effect on my appetite and tastebuds, but the 3 week dose made even water taste like pure vinegar. I was under doctor's orders to gain weight so we kept the house stocked with all of my favorite goodies. Ensure milkshakes were one of my favorites (chocolate Ensure with coffee ice cream is fantastic!). Take good care of your skin, after trying everything else I found Cerave products worked best on my chemo skin. I had no problems with my nails but many others do. Also thought I had no problem with neuropathy during Taxol, but apparently the morphine/fentanyl was masking it. After I stopped the opioids, four months after my last Taxol when all of the opioids were out of my system I started having problems with neuropathy and we had to increase my dosage of gabapentin. Also, Taxol makes your skin very sensitive to the sun so be careful about applying sun block and keeping your head covered once your hair starts to thin, especially this time of year.

    The H&P can cause brutal bone/joint pain in your legs and Claritan can help with that. Even though I was on morphine and fentanyl the bone pain was horrible for the first several doses but it eventually eased up.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2018

    I did not find weekly Taxol to be that difficult until the very end. The drug kept me stable for 16 four week cycles (3 weeks on, one week off.) My first two cycles included the pre-meds, but since I didn't have any allergies, we were able to reduce and eliminate all of them except for the Pepcid. I really dislike the pre-meds, and couldn't eliminate them quickly enough.

    As with any drug, it took my body some time to figure out how to manage its digestive system. The first few cycles I had quite a bit of fatigue, but then again, my body rebound its balance. By cycle 12, my neuropathy and fatigue had gotten worse, so we added an extra week off. My latest scans show that my tumors were smouldering, so I have moved onto a new protocol.

    Taxol, for me, was far easier than either Ibrance or Xeloda. The hardest day from a fatigue point of view was Day 4, but that is the day I watch my now 2-year old grand-daughter and I managed if I napped when she did. I wasn't always able to make dinner that night, but with planning there were leftovers in the fridge. You didn't ask, but the hair loss thing was oversold. I lost about 40% of my hair and then it grew back. My daughter called what returned my "baby duck" hair. It is soft, shockingly white, and thinner. But, I was never bald.

    My hospital doesn't really respect patient's time, so the total time at the place could range from 3-5 hours. The actual Taxol infusion was exactly one hour. The Pepcid ran for 15 minutes.

    Can't help with the port. Mine was inserted just before I began Taxol and I was happy to accept the twilight offerings.

    Does this help?

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  • Honeybee68
    Honeybee68 Member Posts: 34
    edited July 2018

    Thank you all for the replies. All the information is really helpful.

    I get the port tomorrow morning. I guess I will do whatever anesthesia they suggest. I just don't like the stuff, but will do what I need to do.

    I start chemo on Friday. I am looking forward to getting on with it and getting some drugs into me that will knock this crap out.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2018

    Good luck to you tomorrow. I hope that the port insertion goes well for you.

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  • lissalou
    lissalou Member Posts: 66
    edited July 2018

    Honeybee,

    I did the port placement with just a local. It was ok. Ask for an ice pack when you get back to your room. Hope this helps.

    Melissa

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  • Honeybee68
    Honeybee68 Member Posts: 34
    edited July 2018

    Hi all,

    Thank you for the responses. The port placement went fine. The chest x-ray after surgery showed the tube was kinked, so they had to take me back to surgery, give more sedation, to try to get the kink out. The surgeon talked to my husband and then to me when I was awake and said the kink had worked itself out by the time they did another chest x-ray in the operating room, so she didn't have to do any further surgery.

    Anyone had their port line kink and un-kink like that?

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2018

    No kinking here... plenty of other stuff, but not this one. How are you feeling Honeybee?

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  • Honeybee68
    Honeybee68 Member Posts: 34
    edited July 2018

    I was in some pain last night when the anesthesia wore off, but I took two Tylenol and was able to sleep. Just feeling bruised and stiff today. I start chemo tomorrow and am worried about how painful it is going to be when they use the port.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2018

    Honeybee, has anyone given you an EMLA cream prescription? Have you been able to fill it I put it on 1.25 hrs before they will assess, and then cover with press and seal so that my clothing doesn't get covered in the stuff. I don't feel the needle at all.

    Remember to wear a shirt/dress that allows them assess to the port without having to take your clothes off. Good luck!

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  • Honeybee68
    Honeybee68 Member Posts: 34
    edited July 2018

    Thank you, Susan_02143 for the tips! I would not have thought to wear a shirt that allowed them to access the port if you hadn't suggested it. I did get some EMLA cream, but didn't get it until about 30 minutes before the infusion. I think it helped somewhat though. Next time, I will put it on earlier and the infusion nurse also suggested the press and seal too so I already have some of that ready to go for next time. I am on day 3 right now and feeling good - just a little nausea. Thanks again to everyone who responded.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2018

    You are most welcome Honeybee. I have actually had to buy and make assessable shirts. Turns out I didn't own even one shirt that would work! In the winter, not being able to wear turtlenecks when it is in single digits outside is a hardship.

    So sorry to have to join us.

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