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Triggers

annake
annake Member Posts: 31
edited April 2022 in Lymphedema

Hi there

I am still quite new to this, so I thought I would ask fellow cancer survivors/patients what they have found has triggered their lymphedema?

My one collarbone is currently swollen and I have some pain all the way from there till down my arm.


Thanks

Comments

  • minustwo
    minustwo Member Posts: 13,000
    edited February 2022

    ANnake - I believe people have answered on your other thread. It's best to stay to one thread so everyone can follow the answers. Or even ask your question on one of the long running, existing threads.

    Did you make an appointment for a consult with a certified trained LEPT? The sooner you can get treatment started, the easier it is to control.

    If no one has posted yet, this is a good site to learn about LE http://www.stepup-speakout.org/

    That said, much of this is a mystery - to patients AND to doctors who only get 15 minutes of lecture in their 7 years of medical school. You have had lymph removal so you are always at risk anytime - up to 35-40 years.

  • annake
    annake Member Posts: 31
    edited February 2022

    hi there, my other thread was more that I was worried about recurrence. Now I know it is just lymphedema flaring up.

    yes, I have been seeing a LE. weekly during radiation (which was end Nov - to end Dec). I have seen her twice this year.

    thanks for the link :)

  • rah2464
    rah2464 Member Posts: 1,192
    edited February 2022

    Annake as Minus said, it is still a bit of a mystery as to why some develop lymphedema and as to why you can get a flare up. Wish I had the answers for you but I am beginning to suspect this condition like a lot of others is specific to each person. For me, I have discovered that driving a long distance can be problematic. I hadn't realized that i tended to drive a lot with my left hand (bad side) and apparently I put a death grip on the steering wheel ha. So I work to modify that behavior and I wear my sleeve/glove combo in case my distracted brain forgets. Sorry you are experiencing a flare up, very glad to hear it wasn't something else.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited February 2022
    It also may not be that one single thing was the trigger. The damage was always there, so it can develop slowly over time, so slowly you don't notice it until it reaches a point where suddenly you do see it. I didn't notice my arm swelling at all. It wasn't until my fingers puffed up that I realized something was wrong!
  • specialk
    specialk Member Posts: 9,211
    edited February 2022

    I developed lymphedema when I experienced a sudden and pretty severe body-wide swelling during chemo. I had complete axillary clearance (ALND) in Dec. '10 and had bi-lateral lymphedema by Apr. '11 - at the chemo mid-point, despite only having SNB on the non-cancer side. My LE is definitely worse on the ALND side. I am a person who does not have a lot of lymph nodes - ALND surgery only yielded an additional 11 nodes even though levels 1 & 2 were totally removed. I also always experienced hand, foot, ankle swelling when I flew or exercised, or stood for long periods of time. There is a school of thought that lymphedema is a disease of inflammation - this is being looked at in the Stanford University drug study, linked below. I am definitely a person who is prone to inflammatory episodes, triggered by a number of things, but clearly includes some foods, many drugs, surgery and chemotherapeutic agents. So, it is possible that I am someone who had the deck stacked for the development of LE. I currently am eating a non-inflammation diet (eliminates foods that commonly cause sensitivities and allergies) and my lymphedema is improved when I eat this way.

    https://www.med.stanford.edu/news/all-news/2017/05/study-finds-first-possible-drug-treatment-for-lymphedema.html#:~:text=A%20study%20led%20by%20scientists%20at%20the%20Stanford,was%20published%20May%2010%20in%20Science%20Translational%20Medicine.

  • threetree
    threetree Member Posts: 1,157
    edited February 2022

    Heat/hot weather, and then occasional random things that I cannot pinpoint.

  • lw422
    lw422 Member Posts: 1,375
    edited April 2022

    SpecialK--interesting about the number of lymph nodes and I wonder if there's any correlation to lymphedema development there. My surgeon told me that the number of nodes is different for each individual's anatomy. Seems so odd that the lymph system wouldn't be more "consistent" in its design.

    I had a right-side ALND with single mastectomy and had 32 first and second level lymph nodes removed in August '21. (I was horrified that they removed so many... and not a single one had cancer cells.) Makes me wonder if my entire lymph system has similar numbers of nodes.

    I had an LVA (lymphovenous bypass) during my surgery that I hope will prevent lymphedema but I worry since the relatively new procedure has no historical data to speak of.

  • cowgal
    cowgal Member Posts: 625
    edited February 2022

    Rah2464 - Several years ago, I noticed how my arm would swell up while traveling as well but not just if I was driving and yes I was wearing my compression sleeve and gauntlet...like I do every day. Something that has helped me is that while traveling or when I am sitting for a long time, I make sure to bend my arm several times (like a pumping action) periodically. This seems to help keep things moving a little better in my arm. I also do this with my hand where I alternate flexing my hands/fingers and then make a fist.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited February 2022

    I am probably pretty lucky but my lymphedema is mostly controlled by exercise. My left arm is slightly bigger than the right but it's been relatively stable for several years and my fingers almost never puff up anymore. I mention that because the only reliable trigger I've noticed is stopping the exercising. That seems to reliably cause a minor flare up. I guess because fluid is not being regularly pushed out by muscle movement?

    Before I started exercising regularly, it would sometimes flare up when I traveled but it was unclear if it was from flying or because I always wear a heavy backpack while trekking around huge airports. A sleeve and glove helped with that. But I've forgotten to wear them the last few times I traveled and it wasn't an issue.

  • annake
    annake Member Posts: 31
    edited February 2022

    thanks everyone. I appreciate the responses


  • binney4
    binney4 Member Posts: 1,466
    edited February 2022

    Altitude changes affect my lymphedema control, and since I live in a huge valley, that means whatever direction I travel I have to deal with altitude at some point. Also air pressure, related to storms in particular. We've had women here in the past who have reported severe pain and swelling from approaching hurricanes, but as always with lymphedema, this may vary with different individuals. Certainly the daily fluctuations in air pressure can be problematic, but staying aware of them can help reduce problems.

    Any injury, however insignificant, can also trigger issues, since our lymph system uses signals of injury or pain to send lymph fluid to that area to deal with possible infection. (Unfortunately, when we have a compromised lymph system that can mean fluid congestion that can actually contribute to infection risk instead of eliminating it, so it also pays to know the signs of infection and act on them quickly.)

    Temperature is a factor. Summer is generally harder for lymphers to deal with and may require extra self-care to manage.

    New or unusual activity may also be a trigger, and that includes such mundane things as moving the furniture around, turning your mattress or rearranging your book shelves.

    Having a plan for dealing with flare-ups makes all these issues less problematic, and eventually it becomes easier to recognize and deal with (or simply prepare for or even prevent) the triggers that affect our individual situations. Hang in there--it gets better, honest!

    Gentle hugs,
    Binney

  • rah2464
    rah2464 Member Posts: 1,192
    edited February 2022

    Lymphers ha now i have a new nickname

  • blah333
    blah333 Member Posts: 68
    edited March 2022

    Driving also triggers it for me.... which now makes me want to die. Nobody told me two missing lymph nodes would rob me of being able to enjoy pretty much anything I do in life. All I was told was to avoid repetitive movements. I don't even get a swollen arm, just axilla pain and sometimes swelling on my trunk. When it happens it's unbearable and I can't think of anything else. I go to an educational hospital and feel quite certain I have lymphatic issues because I was stuck with an inexperienced moron. And I'm on medicaid, they don't even give me proper access to physical therapy. And when they did the woman only knew about arms, not trucal swelling. I'm in hell.

    The thing that initally triggered it was just carrying a grocery bag. Now I can't read a book on my side in bed, WALKING triggers it, sleeping, and now road trips are ruined two. If I ever kill myself these two missing nodes / my terrible experiences at LAC USC Medical Center in Los Angeles will be a contributing factor. I used to be athletic, active, help friends move etc. and now I'm a cripple, and not even 40 years old. Breast surgeons are so ignorant and nonchalant about lymphedema, and NOBODY I know even knows it's "a thing." My peers are having the time of their lives while mine shrinks and my body feels like shit. I had no idea I'd be giving up an entire quadrant of my body just so some moron could gain some surgical experience.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited March 2022
    I'm sorry you are suffering so much and it's normal to want to blame someone. But nobody knows what triggers lymphedema in one person who had nodes removed and not another. It's random. Cancer and removing the nodes is what caused lymphedema, not your surgeon. I hope you are able to access treatment at some point. Even if it's just a few appointments.
  • bgross144
    bgross144 Member Posts: 5
    edited April 2022

    test

  • rah2464
    rah2464 Member Posts: 1,192
    edited April 2022

    blah - driving can trigger me as well. I never knew I was a person that had a death grip on the steering wheel but now I do! I have to consciously manage that, as well as put more effort into my right hand (left side is Lymphedema side). That said, I wear a sleeve and gauntlet when I need to drive any distance. Sometimes I add a compression bra like the wear-ease Sydney. Makes such a difference for me.

    I am sorry you are not getting the access to treatment you need. If you can get your lymphedema documented enough you may qualify for a flexitouch pump which will massage your involved areas. But I agree, the knowledge is woefully thin.