Help me please... Lymphadema

Dawn, I wish all this would
Dawn, I wish all this would just go away. I'm so sorry you're having to deal with lymphadema now. I'm sure you have the compression sleeve? I'm praying for you now, for relief and strength. I know some of the ladies can hopefully give you some ideas.

Gentle hugs to you,

Sylvia

RE said:

So sorry!
Dawne if it is lymphedema you need to get the fluid moving, here is a link to a video of my therapist massaging my arm aiding in the moving of the fluid which actually helps quite a bit. This is something your hubby can do to help you, keeping it elevated is also very helpful.

http://www.youtube.com/watch?v=q7PPhHqOsUg

Hope you get some relief soon! Hugs,

RE

Sweet girl..
I so hate that something else has been added to your plate...I have it in my breast that I had the lumpectomy when I was diagnosed on '09...and rads..I had my recurrence on June in my lymph nodes..my clavicle nodes and others....so I had to have rads agathe and they had to overlap part of the breast for the first 10 of 25 treatments...so I developed lymphedema in the breast in addition to horrible neuropathy...which I take Gabapentin which chugged my life...my arm had slight swelling...I got a compression sleeve...it made my arm feel worse..so I stopped wearing it...my arm is fine but the breast can get hard as a rock but really isn't pain due to the Gabapentin...

Talk to you oncologist pronto before it worsen....I pray you get relief soon..And yes cancer SUCKS!
BIG hugs,Nancy

Get to a LE Therapist
In the morning call your Center and get in to see their Lymphedema Therapist. If they don't have one then get a referral to one. Not just some PT that claims they know about LE (there are some that are also Certified LE's but not all). Once LE raises it's ugly head, it never goes away but the sooner you start learning to manage the better it can be managed.

Unfortunately, there is no 'quick fix'. You will need to learn MLD massage, be wrapped and learn to do the wrap, and find the right compression garments. There are also MLD machines (mines a Flexi Touch) that help. Be careful about looking at Utube for how to do MLD massages - if done wrong you can cause more problems. I've seen several of the Utube ones that are no where near what my LE guy taught me. Try to keep arm elevated and not stress it til you can see someone.

Prayers

Winyan - The Power Within

Susan

Jobst Sleeve
If you don't have one already get one. They do help. I also had one for my hand as I have rhumatoid arthritis too. Also, as others have said massage is good. You'll need to find someone who knows how to do it on lymphodema, maybe a PT.

Terry

Melaniedoingwell said:

lymphedema
good advice by all respondents. and don't forget - NO needles, NO BP on affected (impaired) side! EVER!!

Good luck

Melainedoingwell .. is right -- Never, EVER
blood pressure, or blood draws on breast cancer side!


Dawne -- Ouch -- what has your Physician suggested? I hope the information
and advice given here on this thread provides much needed relieve.

Gentle hugs,

Vicki Sam

Texasgirl10 said:

Waiting for my Dr
Thank you all for responding. I'm telling you this sucks! I'm waiting for my onc to call me back. I did tell the receptionist that I need an immediate referral to a LE specialist. I saw him last Wednesday for swelling and he cut my dose in half. It didn't work b/c my whole body is puffed up. I've gained 20 lbs in 3 weeks and it's all from that corticosteroid decadron. I still have 6 months of weekly chemo and I honestly do not feel like I can do it like this. I am truly miserable and I just feel sick all over. You would think that in toads world of technology that we wouldn't have cancer anymore nd we sure wouldnt have lymphadema. I even have lymphadema in my upper abdomen. At first I thought it was far, but then it just keeps growing and is extremely hard like my arm. I've had patients with ascites ( abdominal lymphadema) but I never in a million years thought I would be a pt. My face is so swollen that I don't even look like me. My eyes even look different.

I'll let you all know what the onc says when I talk to him.
I
Hugs and God Bless,

Dawne

So sorry
Dawne, I'm so sorry you're going through all of this. Just keep on everyone until they give you the relief you need. Seems like there must be other meds they can give you that may not be as hard on you.

The good news is of course that once you've killed off the beast once and for all, the weight will come off.

Prayers and hugs.

marge

mom62 said:

Jobst Sleeve
If you don't have one already get one. They do help. I also had one for my hand as I have rhumatoid arthritis too. Also, as others have said massage is good. You'll need to find someone who knows how to do it on lymphodema, maybe a PT.

Terry

Certified Lymphede Therapist
Most PT's are not Certified Lymphedema Therapist. Some are but most most are not and can do more harm than good. The few times I've been to PT they always call and check with my LE guy before seeing me.

It's not as easy as just getting a sleeve and glove. It sounds like Dawne has significant LE at this time so it will have to be gotten out via MLD AND wrapping before measurements can be gotten for the right size. There are also different compression levels which do not nedessarily corelate to the amount of LE you experience - I can have quite significant so logic would sort of say that heavy would work the best - Wrong. Light works best for me. There is also the issue of size/fit - not every one can use the standard sizes they have on the shelf - I don't so have to have custom ones made - after 2+ yrs we're still working trying to get glovees totally right (my middle fingers are somewhat webbed.

Texasgirl10 said:

Waiting for my Dr
Thank you all for responding. I'm telling you this sucks! I'm waiting for my onc to call me back. I did tell the receptionist that I need an immediate referral to a LE specialist. I saw him last Wednesday for swelling and he cut my dose in half. It didn't work b/c my whole body is puffed up. I've gained 20 lbs in 3 weeks and it's all from that corticosteroid decadron. I still have 6 months of weekly chemo and I honestly do not feel like I can do it like this. I am truly miserable and I just feel sick all over. You would think that in toads world of technology that we wouldn't have cancer anymore nd we sure wouldnt have lymphadema. I even have lymphadema in my upper abdomen. At first I thought it was far, but then it just keeps growing and is extremely hard like my arm. I've had patients with ascites ( abdominal lymphadema) but I never in a million years thought I would be a pt. My face is so swollen that I don't even look like me. My eyes even look different.

I'll let you all know what the onc says when I talk to him.
I
Hugs and God Bless,

Dawne

lymphodema
So sorry to hear your troubles. Lymphodema is a very nasty condition. I have been battling it for 12 yrs. I ignored it for 2 before that. Don't ignore it. Find a therapist that specalizes in it's treatment. They are a God's send

Sequential Circulator 2004.......
......Is the pump I use to control my lymphedema. It was covered by my insurance. I went to a therapist then started the pump.

living with lymphedema
Dawne,

You hang in there ... I know how you feel and I understand your misery having experienced it first hand. Go ahead and cry and scream ... it helps you get out the anger because that is also what you are probably feeling.

I have been living with lymphedema for two years. Mine also started with chemo. It was the type of chemo that caused the edema to start. Flexitouch pump mentioned in one of the posts has been my life saver, it also gives me the freedom to have therapy at home while I watch my favorite TV show or read a book. It's so relaxing, sometimes I fall asleep!

The sleeve will also be your friend, especially once you are cancer free and want to travel by air. The sleeve helps keep the swelling down and relieves the pain. I wish I had known more about the condition when it first started. My oncologist kept telling me when the chemo is finished it would go away. I believed him and it never did. By the time I started getting therapy, it was three times the size of my other arm. The comments about getting a Certified Lymphedema therapist is so true. I wish someone had told me. My therapist made my arm worse.A good therapist will help you measure for a good sleeve and I also recommend the Medi Sleeve - I find it more comfortable than the Jobst.


I pray everyday for those I know suffering from this condition. I will add you to my prayer list.

God Bless you ...

Laura