Anyone treated per APT trial protocol led by Dana Farber?

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roofcat59
roofcat59 Member Posts: 50
edited August 2016 in HER2+ (Positive) Breast Cancer

I was diagnosed in May with ER+, PR+, HER2 pos IDC. Now post lumpectomy, re-excision, and port placement this morning with paclitaxel plus herceptin to start Wednesday. Treatment regimen based on study data from APT trial. Am wondering if anyone can comment on their experience with paclitaxel dosage spread out weekly for 12 weeks. Am brand new to this cancer business but hoping for the best. Very worried about potential toxicity but have to learn to view these drugs as my insurance policy. At least I'd like to think they are. Any advice appreciated.

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  • Pipandor
    Pipandor Member Posts: 157
    edited August 2016

    Hello Roofcat and welcome to the site. I completed 12 weeks of paclitaxel/traztuzumab on June 3 and have received the first three trikweekly infusions of traztuzumab only. I completed 4 weeks of radiotherapy last week.

    During the 12 weeks of chemo, I lost all my hair, and had diarrhea that I occasionally treated with Imodium. Several ladies that received paclitaxel around the same time had problems with their nails and neuropathy. I had no nail problems and very mild neuropathy in two fingers that has since resolved. This is because 10 minutes before the taxol infusion began and until 10 minutes after, I wore the cryo mits and slippers they supplied ( changing them once after 35 minutes). Very uncomfortable, even painful, but effective. I also used the Sally Hansen nail polish with sunscreen because taxanes react to the sun and make the nail detach from the nail bed.

    The steroids they give to alleviate the side effects of the taxol made it difficult to sleep the first 2 nights after infusion. Fortunately, I have had no negative reaction to the herceptin do far and your onc should be monitoring your left ventricular ejection fraction (heart function) every three months.

    Overall, this regimen is milder than many chemo regimens and on most days, I was able to carry on with my usual tasks. Like all chemo regimens, it is rough on the liver, kidneys and system in general, so drinking a lot of filter water is a habit to develop. I also think that my daily walk helped physically and mentally.

    Be kind to yourself and it will be over before you know it.

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  • roofcat59
    roofcat59 Member Posts: 50
    edited August 2016

    Thank you so much for your response Pipandor. I've been reading so much on these discussion boards about the practice of icing hands and feet during infusion but neither my oncologist nor infusion nurses have mentioned it. It must not be "in vogue" in my area of the state. I think I'll bring it up this Wednesday just to see what their response is. I've had 2 cycles so far and have noticed numbnes & tingling mostly in my left foot after the steroids wear off. Tonight I did some cold therapy on my own - don't know how effective it will be post- infusion. Also made sure I put my feet up for a while as I had been on them much of the day. I have been trying to get plenty of fluids in and my kidneys are getting a real work out that's for sure! Not looking forward to losing my hair, and am desperately hoping I get to keep my eyelashes. Today - day 3 - seems to be my toughest day in each cycle so far. Leaves me feeling somewhat angry and depressed. But tomorrow's another day. Hope to get a real walk in and have more energy to process some of the veggies that need harvesting from my container garden.


    Thanks again for the encouragement; I truly appreciate it.





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  • roofcat59
    roofcat59 Member Posts: 50
    edited August 2016

    Thank you so much for your response Pipandor. I've been reading so much on these discussion boards about the practice of icing hands and feet during infusion but neither my oncologist nor infusion nurses have mentioned it. It must not be "in vogue" in my area of the state. I think I'll bring it up this Wednesday just to see what their response is. I've had 2 cycles so far and have noticed numbnes & tingling mostly in my left foot after the steroids wear off. Tonight I did some cold therapy on my own - don't know how effective it will be post- infusion. Also made sure I put my feet up for a while as I had been on them much of the day. I have been trying to get plenty of fluids in and my kidneys are getting a real work out that's for sure! Not looking forward to losing my hair, and am desperately hoping I get to keep my eyelashes. Today - day 3 - seems to be my toughest day in each cycle so far. Leaves me feeling somewhat angry and depressed. But tomorrow's another day. Hope to get a real walk in and have more energy to process some of the veggies that need harvesting from my container garden.

    Thanks again for the encouragement; I truly appreciate it.


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  • muska
    muska Member Posts: 1,195
    edited August 2016

    Hi roofcat, don't torture yourself with post factum cold therapy - it only makes sense during the infusion: the rationale is, it supposedly stops or minimizes the amount of drug reaching the parts of the body that are very cold. That being said, I was treated at MGH that is two or three miles from Dana Farber and as of three years ago, they did not allow freezing during the infusions. When I asked my MO about it she said it would be torture.

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  • roofcat59
    roofcat59 Member Posts: 50
    edited August 2016

    Thanks Muska for the advice. Since my center doesn't seem to advocate the cold therapy "hypothesis", I guess I'll just go with the flow and hope for the best in the area of neuropathy.

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  • muska
    muska Member Posts: 1,195
    edited August 2016

    Speaking of neuropathy make sure you share all your symptoms with the MO and the chemo nurse before the infusion. They can lower the dosage or even stop the infusions sooner if neuropathy gets worse. Good luck!

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  • Pipandor
    Pipandor Member Posts: 157
    edited August 2016

    When you discuss cryotherapy with your oncologist, you can refer to this recent trial

    http://meetinglibrary.asco.org/content/157142-174

    I've talked to several women who months and years later have not regained sensations in their fingers and toes and wish they had been informed. I think that oncologists should do more to promote cryotherapy for patients receiving taxanes.

    There is resistance to it in some hospitals because it means more work for the very busy nurses but many hospitals have the mits and slippers. For me, it was well worth the pain and seems preferable to dose reduction which can alter the effectiveness of treatment.

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  • muska
    muska Member Posts: 1,195
    edited August 2016

    One thing that everybody can do during taxol infusions, is raising your hands and feet. I am not aware of any studies done but putting your recliner in a comfortable position so that your feet are slightly up and putting two pillows under your arms to keep them higher is not painful at all. The rationale is similar: it will take taxol longer to reach your toes if you have your feet raised slightly above the body.

    Pipandor, thank you for posting the link. It is interesting, however this was a very small trial that did not have a branch for comparison, so they compared to prior taxol studies that found 25% of patients experienced grade 2 neuropathy. In this small trial with 41 patients, half of the patients experienced grade 1 neuropathy. Without digging into the details of how they graded neuropathy in previous studies vs this study, I wouldn't claim cryotherapy is the solution to the neuropathy problem. I hope it helps but some people won't be able to use it because of intolerance to cold or pain involved.

    Speaking of dose reduction, if I recall correctly they give the same dose of taxol to everybody - whether your weight is 100 or 200 pounds. I asked why and was told the difference would be insignificant. I was also told that a small dose reduction or stopping taxol after 10 or 11 infusions would not be of significant impact to outcome. If you can find studies that prove otherwise I would be interested to take a look. My dose had to be reduced from 80 to 70 starting from #3 because of liver reaction. I was offered the option to stop after #10 or 11 because of increasing neuropathy but I completed all 12 (last one or two with raised hands and feet.) Two years later, I don't have neuropathy but I have lymphedema in the left foot only.

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  • Pipandor
    Pipandor Member Posts: 157
    edited August 2016

    Hi rooftop. Came across some positive information about the weekly paclitaxel regimen that I thought you might find encouraging.

    http://www.ascopost.com/News/4213

    For aggressive early stage breast cancers, the weekly regimen was found to be as effective as the biweekly and triweekly ones.

    Dosing is 80 mg per square meter of body surface so it is based on your size. if you're curious, your oncologist can explain how that is calculated.

    My oncologist did not like to reduce dosage, but would have if bloodwork had revealed a problem or if I had requested it for neuropathy.

    When the going gets rough, it's good to know you are receiving the best possible treatment, and that you have options. Hang in there!

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  • roofcat59
    roofcat59 Member Posts: 50
    edited August 2016

    Muska and Pipandor: thanks so much to you both for the information links, advice and encouragement. I feel very fortunate having been offered the taxol plus herceptin regimen vs. the AC-T plus herceptin recommended by the 1st oncologist I saw. It really does pay to get a 2nd opinion to find out there actually are options out there. Round 3 starts for me tomorrow. I'll be sure to elevate my legs & arms as much as possible during the taxol infusion.

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