GRRRRRRRRR I HATE LE..........

GmaFoley

Thanks Binney I needed that picture ROFL.. 

carol57

Paty, Welcome.  Binney is indeed a very treasured, knowledgeable resource, and she has taught more than a few docs and nurses a few things about LE.  I have no knowledge to comment on the chance of MLD across the body sending the cancer that way, so perhaps Binney or Kira will offer some insight on that possibility. It's a very fair question, and I'll bet others, like me, will be interested in the answer.

I just wish you the best and especially that you have some great resources on your medical team, who can make sure that your LE treatment is working at optimal effectiveness as you continue your BC treatments.  Please keep us posted.

Carol

proudtospin

Binney, your sketch is adorable and so on target as to how I end up explaining LE to folks

left arm is feeling weak so trying to do very light weights as in 2 pounders, tried to explain to a trainer my problem, smart woman but totally clueless so thinking working on my own is better than using an untrained trainer.  Need to find a good one who gets it

paty158456

Teka, what does MO testing mean? I noticed enlarged lymph nodes in my neck when my cancer came back, along with swelling and pain in my arm. They did a CAT/PET and MRI's to see what was going on and they found new node involvement. I really think these types of tests are necessary to see what is going on and that the mammograms don't show much, especially with women with dense breast tissue.

kira66715

Paty, No one answered your questions, that I could see. Let me try:

1) There has never been a study that shows that MLD can spread cancer. The therapists are taught that active cancer is a relative contraindication to MLD, BUT, as cancer can cause LE to flare, by getting into the nodes, and more and more therapists are working on stage IV women, they just have never shown that MLD can spread cancer. I strongly believe that nothing you did to reduce the swelling in your left arm and hand caused cancer to move into your right nodes. Please don't ever blame yourself.

2) Hand swelling: I have it, and it's tough, because hands aren't a simple cylinder like an arm, and the body has to work harder to drain a hand under normal conditions. There is an MLD sequence for hands, and personally, I wear custom gloves and I do wrap my hand and arm every night.

Here is a general arm sequence, but in this one, they are using the axillary nodes on that side, so you wouldn't--now it should all go to the groin--and don't forget the abdominal work, it really clears things out:

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Here is a sequence for the palm:

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And here is how to clear the deep abdominal area, which is very helpful--you use the whole palm of your hand--or hands, and always move toward the belly button--push it toward the belly button and then release, in kind of a scooping move and repeat 5 times in each place, and you can also do a deep breath and hold your hand in each of the positions and gently resist the breath at full inhalation, then exhale:

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And finally, as part of a full wrap, a gauze wrap of the hand is helpful--either with the full wrap or alone

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paty158456

Carol57, thank you for your kind words. In addition to having good dr's, I see that these posts are a great source of information!  I have been so busy trying to get control of my metastatic cancer treatment and haven't been for lymphedema treatment since April. With all the tests, treatment and dr visits there seems to be no time for the physical therapy and lympedema treatment i need.

paty158456

Kira, do you have to wear your custom glove 24/7? My therapis told me to get a compression glove and it seems like it pushes the fluid up to the middle of the back of my hand instead of keeping it out of my hand.

kira66715

Paty, I only wear the glove at times as it does sometimes trap fluid up on the dorsum of my hand--I had to experiment with a few off the shelf gloves, inserts--foam or pads on the palm or top of the hand, and finally I got a good custom glove.

I get the most "bang for my buck" by wrapping at night, with foam pieces on the hand.

Another trick to get fluid out of the hand: raise your arms overhead and pump your fists. Try to do it 10-20 times, a few times a day.

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Marple

Kira, this visual and description is really helpful.

Teka

paty,

Medical Oncologist should at least order a follow-up ultrasound.   I know many BC patients who found their own BC shortly after having a mammogram.   I've little faith in a Radiologist making judgement call based only on a mammogram.   

Binney4

Paty, you've got everything in the right order--all those tests, treatments and doctors visits come first. The PT will keep until you have a moment to catch your breath. Bummer, though! When you can grab a moment for lymphedema, your therapist should be able to prioritize treatments so that comfort and control come first and all the "extras" can be added later as you're able. Lymphedema is a continual steep learning curve, but lots can be done quickly when appointment time and energy is limited.

I've asked your question about cancer spread to people who study such things they tell me that metastesis is far more complicated on a cellular level than that. We who aren't scientists picture it as a simple matter of some cancer cell sitting quietly in place, then we jog it along with our lymph drainage massage and suddenly it's somewhere else, madly multiplying. Scientists picture it differently, as there are likely rogue cells in everyone's bodies and they don't all start to grow into nasty cancers. Something has to trigger that, and that triggeriing process is much more complicated chemically than our simple "picture" takes into account.

Also, our lymph systems are always at work, pumping lymph fluid. As you probably already know, our muscles help push lymph fluid through the vessels whenever we move. The tiny compartments that make up the lymph vessels (called lymphangions) also have a weak but steady pumping action that moves lymph around our bodies. Manual lymph drainage (MLD) helps to move fluid from between the cells back into the lymph system more efficiently, but if you didn't want to move any lymph from one part of your body to another for fear of moving cancer cells, you'd have to lie perfectly still and find a way to turn off the pumping action of the lymphangions. In other words, while MLD may make lymph movement more efficient, it sure isn't a deciding factor in that movement.

I hope some of that makes sense, and I hope it helps even a little. A recurrence is hard enough to deal with, without all the "what-ifs"!

Teka's use of MO is short for medical oncologist. She just means she's calling her oncologist and will see him tomorrow. Teka, keep us posted!!

Hugs all around,
Binney 

Teka

FireKracker

Thank you Kira for the pics you posted.You and Binney make living with this ugly disease soo much easier.

Bless both of you.hugggggggs K

BoobsinaBox

Kira,

Thanks for the diagrams. They make things clearer than they were before to me!

Dawn

dunesleeper

Hi ducky. I wish I could say something to make you feel better, but all I can say is I'm right there with you. I hope tomorrow is better for us both. I'm having a heck of a time doing what I am supposed to do to keep cancer away. I just don't seem to care about living anymore. However, tomorrow might be better.

FireKracker

((((((((((((((((((((((((Ducky))))))))))))))))

its gotta get betta,it will get betta.time sista....its with us and against us all the time

I have been thinkin of you...just wish i could give you a hugggg.

special prayer for you tonite.

I miss you

huggggggggggggs K

duckyb1

Thanks for caring.............wish I could get myself out of this "funk", but it just won't go away...its just everything....end of summer, closing the shore house, LE, so much ankle, feet, and leg edema from the meds...........I just want to feel good again................I mean really good, not just better then the day before.................I know that is asking for a lot, but I guess I can hope............isn't that all we really have...........................hugs

Quail

Hey, ducky, it's ok to be in a funk you know; it's ok to grieve. Autumn always makes me nostalgic anyway, it's even harder now, in some ways.  But give it a couple of weeks and the nights will turn crisp and the sun will shine and your beautiful Philadelphia trees will flame into colour--there's life in the old girl yet!!!

BIG STRONG HUGS--and do those breathing excercises, they seem to be helping me mentally as well as physically. 

GmaFoley

Ducky: close your eyes and imagine God or your favorite person is swinging on a porch swing holding you close.. I'm there with you..***HUGS***

Binney or anyone else - If surgeon says no MLD for 2 weeks - Can I still wear my sleeve as a precaution while working??? 

sandcastle

Good Moring.....Hope all has a good day...........Has anyone here ever come across the website....BEYONE THE BOOBIE TRAP.....somehow I happened upon it and listened to the video and it was a great help to me.......Liz

Teka

Mo and Nurse off today.   However, Nurse covering said that any problem would have shown up on mammogram.  Husband feels I am symptomatic enough for a CT Scan.   I only had a mammogram and ultrasound when 1st Dx in 2010.   Time to exercise and massage sore boob.

Binney4

Gma, I'd say yes. The action of MLD is to move fluid toward your trunk, where you don't want to encourage swelling now and can't do a thorough job of draining due to new wounds. The garments don't move fluid, they just keep it from accumulating, so that's a GOOD thing.

Ducky, even in your grieving I'm looking forward with you to exactly those days you're hoping for--and soon!

Be well!
Binney

nibbana

Quick question.

The fist pumping trick doesn't seem to work for me in moving any fluid out of my hand. Am I the only one?

My glove makes a nice fuild collector. I take it off an look at my swollen hand.

FireKracker

Help!!!!!

last nite my boob felt a little sore sooo i put on my after surgery bra,did my exercises,deep breathing and this morning i had sooo much burning pain in my boob i had to not only take off that harness im braless now with my shirt inside out...my boob is swollen and burning.my mind is blank.I DONT KNOW WHAT TO DO....im goin for my evaluation on wed.tomorrow is the obgyn.

Im sick and tired of being sick and tired.

I hear ya Ducky!!!!!!!

Grrrrrrrrrrrr I hate this LE.

GmaFoley

Granny - so sorry you are going through this...Breathe... water... elevate....  is hot too? if it is you need to go see someone asap... I understand Granny... it is very scary... I sent Binney a PM.. so hopefully she can tell you more.. here is the emergency site!!! I am in your pocket, blowing trying to keep you cool.... but really - see someone..

http://stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm 

GmaFoley

Grannydukes I was also told no MLD for 3 weeks after surgery... 

But if it is also hot - and swollen - get into see your doc asap - ok? here is the emergency site if you need help on what else to do 

http://stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm 

I did PM Binney so she might be able to help. 

FireKracker

Thanks Jo.

I called the LE therapist and told her what happened.She cannot tell over the phone and i never saw her but she did tell me to ice it 10 min on and off and call my Dr.maybe an infection.im goin to the obgyn tomorrow and ill let her look at it...i dont take pain meds because of stomach issues.havnt taken anything for pain its almost 2 yrs...

i can do this...i know i can do this.

everything bothers that boob even the seams on my shirt.

im gonna do nothing just like you said unless binney or kara tell me different....

any bra would bother the crap out of me.grrrrrrrrrrrrr.

FireKracker

Gma---its not hot but yes it is swollen.Thank you both for the quick response.

i have a bag of peas on it now.

Binney4

Grannydukes, do NOT wait until tomorrow. The kind of infection that comes with LE can spread like wildfire and you will need the ICU instead of the ER. Please go now. This isn't an endurance test, it's an emergency.

Really gentle hugs and a push out the door!
Binney

Teka

JO-5,

Maybe you're correct, and I over did the MLD on sore boob.   Now MO will have to rule out recurrence.   Damn!