Just diagnosed with lymphedema - skip/delay last taxol?

puffinsarecute
puffinsarecute Member Posts: 4
edited May 2018 in Lymphedema

Hello,

I had a large TN tumor removed in lumpectomy and am on the AC/Taxol chemo protocol with only last taxol to go tomorrow.

I was just diagnosed with lymphedema friday, very swollen arm where lymph nodes were removed. They will order a compression sleeve. Googling I see there are some anecdotal links between taxol and lymphedema. Am very concerned since arm has not yet been treated at all that hitting it with high dose taxol tomorrow may not be good for it.

My oncologist wont be there tomorrow, just the nurse. Would it make any sense to delay treatment or even consider skipping this last dose? Any thoughts much appreciated!

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  • pupmom
    pupmom Member Posts: 5,068
    edited May 2018

    Call your doctor and leave an urgent message!

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  • puffinsarecute
    puffinsarecute Member Posts: 4
    edited May 2018

    thanks! just called the after-hours hotline. will update with what they say.

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  • puffinsarecute
    puffinsarecute Member Posts: 4
    edited May 2018

    They said I'll be able to speak with an oncologist to discuss before my infusion.

    Would still appreciate any thoughts based on your experiences!

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    puffinsarecute - Welcome to the Community. We are glad that you reached out here and we hope that you will find great support and information!

    We're happy to hear that you'll be able to discuss it before the infusion. Please come back to let us know how it goes! In the meantime, here is what we have in our main site about Taxol and its most common side effects. Also, you can learn more on breast cancer treatments that can cause Lymphedema (just click on the link to go there).

    We hope this helps!

    The Mods

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2018

    puffinsarecute, simply ordering a compression sleeve is NOT the treatment for lymphedema, and ordering one now, before the swelling is reduced, will be expensive and useless. You need to get a referral to a well-trained lymphedema therapist for evaluation and Manual Lymph Drainage--a gentle massage technique that moves the fluid out of your hand and arm--along with wrapping with special, short-stretch bandages to bring down the swelling. THEN you get fitted for compression garments. Here's how to find a qualified lymphedema therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    We'll all look forward to hearing how it goes today. In the meantime, while you wait for an appointment with a lymphedema therapist, here are some things you can do to help control the swelling:

    http://www.stepup-speakout.org/How_You_Can_Cope_wi...

    Please keep us posted, and tell us how we can help. Gentle hugs,
    Binney

    p.s--I agree with you that puffins have a very high cute factor!

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  • puffinsarecute
    puffinsarecute Member Posts: 4
    edited May 2018

    Thank you all so much for the support and information!

    I did end up doing the last treatment, on the advice of the oncologist. He said it's unlikely the taxol will effect my lymphedema but even if so the benefits of completing the treatment cycle outweigh the risk. The good news is I'm done with chemo, so any effect should dissipate over time.

    Binney, the person I saw was a qualified lymphedema specialist but I guess she wants to start with the sleeve and then do some MLD sessions once insurance approves them and train me to do MLD myself. Whether this is best who knows. I did see some Canadian article that sleeves can reduce swelling comparably to MLD for early lymphedema. But maybe I should also try for a second opinion.

    Thanks so much for your helpful links, especially the one with what I can do to help while I'm waiting. It helps to feel I'm doing something! Hugs




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