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Topic: Confessions of an LE slacker - long

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Aug 30, 2006 06:47AM

PJB wrote:

You guys were all there for me when I first got out of denial-ville and admitted that the swelling in my arm must be lymphedema. I went to the therapist, got wrapped once, massaged a few times, learned how to do it myself, bought my sleeve, etc.

I did quite well for the first couple of weeks, massaging every night, wearing my sleeve during the day. But I really didn't notice much difference. I mean, my lower arm (which is where it's swollen) wasn't as stiff to the touch, but it didn't look much smaller.

So then, well, I'd just wear the sleeve a few times a week and still was good about massage. Then, well, I was only massaging every few days. And still things seem to remain the same, sometimes even look better than when I was being faithful to the regimen.

Then well, it's been SO hot this summer, I haven't worn my sleeve in probably a month nearly. My arm seems to get better some days and then back to the status quo.

So, here's my question. Am I just asking for trouble? If it's not getting any worse to my eyes, am I still somehow deceiving myself and just because it doesn't look or feel any worse, it is?

You guys are so helpful and so faithful in treating yourselves. I feel like such a bad LE patient.

Paula
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Aug 30, 2006 09:52AM Jennifer wrote:

I am not sure how to answer this but I think I would not want to chance it any longer. I would check in with your PT and be remeasured to make sure your sleeve still fits and start over. LE is for a life time and yes sometimes we will get tired of and frustrated in dealing with it and that's okay. I personally get upset/frustrated because I try to be good about taking care of my arm and see so many having more reduction in arm size then me. I have swelling in my lower arm and elbow areas. But the key is to get right back with it to avoid any complications in the future.
Jennifer
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Aug 30, 2006 10:34AM Binney4 wrote:

Gosh, PJB, what a wonderful post! I goof off sometimes, and I certainly hope I'm not the only one here who does. And it's especially tempting when whatever I'm doing isn't controlling things the way I'd like, or when it seems to take dynamite to move the insurance people or the medical team to act on my needs. Like Jennifer says, this is for life. And that's a very hard concept to get your head around.

And I'll also second what Jennifer says about getting back on board and starting over. Because, yes, there is damage going on that is not visible. Untreated, LE creates fibrotic tissue inside that not only is harder to reduce, but also does further damage to the lymph system. It reduces the availability of oxygen within the circulatory system, makes wound healing much harder, and encourages the growth of harmful bacteria. That is, it puts you much more at risk for serious, systemic infection (which is, BTW, the medical reason that our insurance companies pay for treatment, however grudgingly: it's cheaper than a week or two in the hospital or -- God forbid, the ICU -- on IV antibiotics.)

As for all of us here being so faithful and so downright cheerful about all this, I've definitely been thinking lately that we're missing those posts that got deleted when the boards shut down a couple of months ago -- the one's with titles like "Lymphedema Sucks" and "I Can't Get My Mind Around This." At the moment there aren't any of those ranting, raging posts going on here, and the newly diagnosed women have been so amazingly stoic about it all -- I'm beginning to wonder if I'm the only one still struggling to stay on top of my emotions and frustration where this idiot condition is concerned. Maybe fortunately, I can't get away with much because I swell so quickly without compression and other self care, and the chest swelling in particular is quite painful. But inside I have to admit I'm not especially accepting of it all.

So from my own seriously wounded state, I want to encourage you anyway to take very good care of yourself, because you matter. If you're not getting the kind of knowledge and support you need from your therapist (not to mention wrapping, which is the gold standard for reduction of swelling), can you find another who will work better for you?

Jennifer, I love your posts always, because you're so direct and clear and compelling. Sorry for the ramble -- can't ever seem to be brief.

Binney
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Aug 30, 2006 06:56PM NPat wrote:

Paula,
I do this "knowledge is power" thing with my patients... if you know you have a problem (LE) and you are given the tools to control it (LE education and garments)... then use your tools, girl! You CAN do it! Yeah, I was disgusted at the site of my garments when I first got them and cringed when I looked at myself in my favorite dress... sleeveless with polka dots... that darn sleeve attracted more attention then the polka dots. Then... I came to my senses. I am trained and credentialed in patient education... what a great object lesson I was!!! But in order to be that example, I had to accept the fact I had this darn stuff and I had to do what I was taught to do.

I agree with the previous poster. If you haven't been wearing your garments, please see your LE therapist for a re-eval. An ill fitting garment could cause more swelling. Believe me healthcare providers see noncompliance all the time and we welcome people who return and want to start over... at least I do. Forgive yourself and move on... You CAN do it!!!

Pat
NPat
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Aug 30, 2006 08:29PM inspiewriter wrote:

Do you all measure your own arms? My therapist showed me a fairly easy way and I measure key spots almost every day.

Like some of you, I haven't seen much change from the day sleeve, so am now only wearing sleeve/glvoe 5 hours a day (more if I exercise) and then wrapping at night, putting an extra piece of elasticized tubular sleeve over the back of my hand. That's the trouble spot. The night wrapping seems to do waaaay more than the day compression.

I am wondering if I will wrap more once it's cold out and I can wear long sleeves? Or if the cold will make our arms smaller???
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Aug 30, 2006 08:34PM andys wrote:

Hi Paula,
I defy you to find someone 100% faithful to the treatment regime. I know that I was very compliant for a long time, but that was mostly because of the discomfort when I skipped the massage, wrapping, and sleeve/glove. Now that things are more under control, I play around with it a bit, experimenting with how much I can skip without feeling the difference. And, I suspect that I probably skip a bit more than I should. I agree with the others who say to get re-evaluated and get back into the treatment thing. We all hate it, but it does seem to work. Discuss your "lapse" with your PT/OT because she/he may have some suggestions for things never to skip vs. stuff that you can let go for a day. For example, my OT says never, never skip the trunk massage. Of course, I do, but less frequently. Also, figure out how to measure yourself. Even if your arm looks the same, you might not notice gradual changes, but the tape measure will. And who knows, you may be one of the lucky ones that doesn't need the daily bandaging, etc - so your summer off may not have made any difference at all. And if your summer included swimming or other "good" exercise, there might even be improvement. We're all so different, the important thing is to understand your "version" of lymphedema. You're not a bad le patient, just a normal one.
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Aug 31, 2006 08:16AM ps123 wrote:

Hi Paula -

I haven't been that good an LE patient either this summer . So, you're not alone. My LE is mainly in my hand and is a fairly mild case. For me it's frustrating because it seems I can wrap, do massage, wear just my glove or my glove and sleeve and it really does no good that I can see. My hand seems less swollen after I've had my glove off a while. I'm not sure if it's less swollen or if it just distributes differently once my glove is off. So, I don't know what the answer is.....

I don't know whether it does harm to not where the garments if there's no noticeable additional swelling but just thought I'd let you know you're not the only one.

Take care,
Pat
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Aug 31, 2006 06:23PM gsg wrote:

i was just told the day before yesterday i do, indeed, have LE. i only had two lymph nodes removed and thought my slight upper-arm swelling was due to the SNB last april and also i have a blood clot in that area. turns out, i was wrong. i'm going to get my arm wrapped for the first time today. i'm so upset about this and keep wondering if i did something wrong. i tried to be careful with my arm, even though i was told with only 2 nodes removed, i was at low risk. the swelling is slight, but my entire left arm is larger than my right, according to the measurements. i'm the type of person who starts things and doesn't always stick with it (exercise is a good example of that). i'm worried i'll be an LE slacker, too, PBJ.

Pardon me if I repeat myself. Can't remember jack. Dx 3/2006, IDC, 3cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Aug 31, 2006 07:41PM inspiewriter wrote:

I agree, sometimes I don't see much difference, esp after wearing the day sleeve/glove.

Does anyone expect to get their fingers as small as they used to be? Should I keep trying to make the fingers a bit smaller (for my wedding rings) or just accept they will stay a bit bigger from now on?
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Aug 31, 2006 10:52PM roseg wrote:

I think you should have your rings made bigger.
I don't have LE, but my rings got tight - I think from tamoxifen and whatever it causes.

I had a groove in my fingers where the ring was, and developed a little ezemca on the finger - so I decided getting them resized was the way to go. I've also been taking them off at night.
Rose
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Sep 1, 2006 04:44AM gracejon wrote:

I have not done much to treat arm LE this summer. I keep thinking that I need a chat with therapist but have not done that either. I have three areas that swell. They seem regardless of treatment or lack therefore of treatment much the same. I do find heat and humidity affect them and it also seems worse first thing in morning upon waking. I suspect if I went back to wrapping at night, the morning problem may be better. On thing that has plagued me from the beginning and seems not to change with treatment is the aching burning shooting discomfort that I have. For a while, I thought that symptom was exacerbated by having something on my arm. I have recently gone back to wearing my watch and although sensation is annoying it doesn't change. My rings have never been an issue but I did switch to wearing those on the other hand for a time. I have been able to watch and do have my sleeve and paraphenelia with me at all times to put on. I really have not used it. Just living on the wild side!

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Sep 1, 2006 08:00AM PJB wrote:

Whew. I'm glad I'm not the only one who's not always compliant...

Well, I did my massage for the last two nights and wore my sleeve today (we've gotten a bit of a break in the weather). My arm doesn't look different really, but I'm gonna get back on the horse and be more vigilant. Baby steps, right? I see many of you share my great frustration with this. I was SO careful. And I hate thinking I got SOMETHING ELSE wrong with me. And that I'm stuck with it.

And after things get a little calmer at work, I'll look up the therapist again and have her evaluate how I"m doing.

I thank you all so much for encouraging me.

Paula
May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Sep 1, 2006 09:21AM Jennifer wrote:

Just another thought here, Some days I see subtle and I mean very subtle changes in my arm and other days I can't even tell if there is reduction or not. See I am one of those women who has not seen much reduction and have resolved to the fact I may not. Not on a permanate basis any way. But I don't see gain, well unless I go some place where the altitude is higher then I see gain but I know why and what to do. So as long as I am taking care of the arm, yes I slack like every one else does (my latest that darn reid sleeve) but something positive is happening with my arm in that it isn't getting bigger and so far (knock on wood) I have not had any problems with infection. So I must be something right. Maybe I could do more but some days I do two thirty minute massages and wrap and wear the sleeve and do the exercises and so on. Other days maybe I only massage for fifteen minutes twice a day and don't get all the way through the exercises. I think I read in our favorite book about one of the cases where one woman talks about if she did more then her outcome might be different but she felt comfortable with what she was doing and how her arm looked and felt. I mentioned before LE was for life and it is but we still need to live that life. So we all adapt a routine that works for us and sometimes we just need to alter the routine or take a break every now and then, like my 15 minutes twice daily days for massages. Hope this all makes sense.
Jennifer
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Sep 1, 2006 07:58PM inspiewriter wrote:

Good point, Jennifer. That's why I am considering just getting my rings re-sized, instead of killing myself trying to get the fingers smaller again. They don't look swollen to other people, and as long as my measurements are not going up, I am happy with what I have now.

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Sep 1, 2006 08:11PM jinky wrote:

Hi Robin, Can you share the key spots your therapist showed you.? thanks and le hugs jinky

age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Sep 2, 2006 01:49AM jinky wrote:

Hi Jon. I to get that acky burning shooting discomfort if i don't wear my sleeve enough. That sure smartens me up. I only have it around the inside of my elbow. It is so hard to wear garments and wrap faithfully.Le hugs jinky

age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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Sep 2, 2006 05:17AM NPat wrote:

Oh, about the rings. You can order one of those "latches" that is installed on your ring and opens up to let one get their ring over a larger knuckle and the ring will not wobble. I just wear my rings on my right hand and everyone thinks my husband is dead. These are examples of solutions: http://www.fingermate.com/ http://www.ringlock.com/
Pat
NPat
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Sep 2, 2006 07:07PM gsg wrote:

I went to get my arm wrapped and now they're saying maybe I don't have LE because the swelling had gone down so much; that maybe the day I was in to be checked that side was swollen due to the heat and humidity. Who knows.

They taught me how to massage as a precaution and since I'm having a lumpectomy on 9/14, they're going to check me again on 9/28 in case that disrupts things.
Pardon me if I repeat myself. Can't remember jack. Dx 3/2006, IDC, 3cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Sep 2, 2006 10:03PM Binney4 wrote:

Wow, gsg -- the best of both worlds! No LE (I hope, I hope!), and you've learned what you need to know to keep it at bay, too. Do continue the massage right up to your surgery date (and beyond), as there are recent studies that indicate pre-surg and follow-up massage can actually help prevent LE from developing. Nice!

I've filed that one in my "Things-I-Wish-They'd-Told-Me" file -- which is getting pretty darn thick, BTW! Thoughts and prayers for a successful surgery and quick recovery -- and no LE!

Binney
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Sep 3, 2006 02:11AM inspiewriter wrote:

Quote:
Hi Robin, Can you share the key spots your therapist showed you.? thanks and le hugs jinky



When she measured me, she took a tape measure and marked with a pen every so often, then measured these spots weekly.

She showed me how to do it by putting a piece of medical tape on the end of the tape measure, then wrap it around certain key spots that would be easy for me to remember.

1) Around hand, just below knuckles
2) around wrist
3) Midway between wrist and elbow, where I have a mole
4) Around elbow
5) Midway between elbow and shoulder, at another mole

She said not to worry if they changed slightly, some spots might be bigger than others, than it could change the next day. Overall, just make sure the whole arm isn't increasing.
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Sep 3, 2006 02:13AM inspiewriter wrote:

Quote:
I just wear my rings on my right hand and everyone thinks my husband is dead.
Pat



I have been doing that too, but they have to go on the pinky finger because that hand is bigger than the other (used to be). Maybe I will resize them for my right ring finger.
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Sep 3, 2006 07:52AM janie44 wrote:

Hey Paula,

Although I am very good about the sleeve and wrapping, I am terrible about doing the massage. I was doing well keeping LE under control, but lately I have been swelling and I know by looking that it is bigger. I have even worn the wrapping during the day and it still is swollen. I guess I am going to have to give in and go to the LE clinic.

My last therapist told me not to leave my wrapping or sleeve off even to have a morning cup of coffee. She did say that I may go without it for a couple of hours on very special occasions only.
Dx 3/11/2004, IDC, 3cm, Stage IIIA, Grade 3, 7/21 nodes, ER-/PR-, HER2+
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Sep 9, 2006 12:45AM HappyTrisha wrote:

Here are confessions of a stubborn, lazy, good with denial, LE patient. I REFUSE to become a slave to my LE; my idea of a good time isn't wrapping so I absolutely will not do it; I don't do any massage; and when I think about it I will wear my sleeve. And I usually end up waking up and feeling so warm that I rip it off my arm, throw it across the room, and then contentedly go back to sleep.

I admire people who do the right thing. I guess when it means enough to me, I do the right thing. (It seems that LE isn't critical enough to me to pay attention to it...) I also guess that I am willing to deal with the eventual periodic swelling, convincing myself that throwing a sleeve on for a period of time will at least bring it under control. One of my happiest moments here was when I read about post about some trials being done on LE patients. I will just keep waiting for the day that the anti-inflammatory is found to do the job.

Do you all think I'm tragic and/or a fool? I won't get upset at the answer, especially since I asked the question!



Trisha
I'M DOWN WITH CHEMO!
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Sep 9, 2006 01:56AM Binney4 wrote:

Hi, Trisha,

If anybody calls a LE sister a fool for making her own informed decisions about her treatment, they should be whopped over the head with a butterfly net!

As for tragic, that remains to be seen. Maybe not, as I know women who've had LE for years and more or less ignored it with relatively few repercussions. Trisha, you know the risks include systemic infection, fibrotic changes in the arm with further damage to the lymphatics, loss of arm mobility, and decreased arm strength. So do please at least plan to act at once if you notice any redness, warmth, or oozing of fluid.

One way or another, we are all slaves to this condition once it develops (or even once we're at risk for it). The only choice we have left is how to deal with our slavery. So whatever course you choose, we want most of all for you to be WELL!

Sending you warm thoughts and hopes in that direction!
Binney
P.S. - Like you, I hope that some of the research being done will lead not just to better treatments, but to a cure. And in the meantime I'm more-than-hoping that everyone with LE who DOES want treatment, bandages and garments can find compassionate therapists and a way to afford everything they need.
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Sep 9, 2006 09:06PM andys wrote:

Trisha,
We each make our own decisions about how to handle any myriad of health issues, so no way will I call you a fool. I suspect I was initially extremely compliant with bandaging, exercise, and sleeve/glove wearing because the alternative was serious discomfort. Who says lymphedema is painless? Now, I'm not nearly so compliant, because I don't need to be - the pain-in-the-neck treatments did their job (I know I'm one of the lucky ones). Everything in life is a trade off - for you, the inconvenience and discomfort of the treatment is much worse than the inconvenience/discomfort of the actual condition, so that has guided your choice. As long as it isn't affecting your health - no serious infections, or permanent damage to your arm, who can argue with it. After all, 10 or 15 years ago, they didn't even know about the bandaging, etc. And, it actually sounds like you've found the treatment regimen that works for you - "I also guess that I am willing to deal with the eventual periodic swelling, convincing myself that throwing a sleeve on for a period of time will at least bring it under control."

BUT, ( and you knew there would be one) I hope you are monitoring your le so that if serious repercussions are developing, you will take action. AND, although I think we all have the right to whine about this le, sooner or later, we need to live with the choices that we make.

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