See You in 6 Months/Lymphodema

pupfoster1

See You in 6 Months/Lymphodema

pupfoster1

Well, good news is that my onc says she will see me in 6 months---hurray!  The bad news is that I do have a "mild" case of lymphodema in my right arm.  Really tight, sore tugging and swollen a bit.  So I have been wearing the nasty ugly lyphodema sleeve last few days.  Still hurts.  Anyone else on this board have suggestions for this?  I am going to look into massage.  Also I will check out the Lymphdema forum.

Hope everyone is doing well here.

Love,

Sharon

KerryMac

Sorry to hear about the lymphodema - can't offer any advice there, but your best bet would be to try the forum - I think there are some very knowledgeable people over there.

But, big congrats on the good Onc visit!! That is great news indeed. 

jennyboog

Congrats on the 6 mths appts., I'll be so happy when I get there.  Sorry to hear about the LE, I have a little bit I think....I say I think b/c I'm not sure but do know something is going on.  I don't have any swelling but my arm goes to sleep really easy at certain postions, sore and a tugging.  I have just been living with it b/c no dr has dx me with LE or offered any advice on it.  Sorry, I don't have anything to offer but hope you can find something that works.

Pure

sooo happy for you...After all the scares you have had finally a break:) I am on 6 months as well and it has really allowed me to feel normal as I am not constantly at a doctors office:)!!! HAve a great spring you deserve it!!!

precioustime

KerryMac-- I absolutely Love your hair!!  I was just sitting here thinking about getting mine cut very very short because of all the curls -- BUT looking at yours is giving me hope that it just might look good after it grows out a bit:)  I haven't been on here that much lately because believe it or not-- there are times I "Forget" I even had breast cancer!!  This June will be 2 yrs. ago that I was diagnosed and it's been 1 yr. since treatments have ended!  Thank God!!

I have recently changed my oncologist due to insurance change--so I am still scheduled for every 3 months!! 

Sharon- If you haven't been taught how to do lymphatic massage -- it is very easy and helps A LOT!!  I was lucky enough to have gone to physical therapy shortly after surgery and started exercise as well as lymphatic massage in which I do almost every day! 

My husband and I have recently opened a restaurant and I find myself pre-bussing tables and helping the servers out-- SO by the end of the night my arm is feeling tight, sometimes swollen even while wearing the sleeve.  I am so happy to be ALIVE that lymphedema and all the other opportunities that comes with our treatments are manageable and I WILL NOT GIVE UP! 

Mind over Matter:)

Much Love!  Loretta

jenn3

Sharon - so glad to hear that you've moved to the 6 month appts - yipeeeeeee

I have LE in my left arm, it seems to have slowly gotten worse over the last few months.  I asked my onc about the sleeve the last time I was there because it was really swollen and my shirts weren't fitting on that arm.  He said that it wasn't bad enough to require a sleeve - WHAT???  I was upset, but after speaking to him and looking into it - there are risks with the sleeve and I think what my onc was saying is not to wear the sleeve it I don't have to.  The swelling does seem to be getting a little better, but it's still swollen - no pain involved.  I do massage it when I remember, which is a few times a day.  The LE therapist I saw last year told me what to do and it does seem to work.  I rub from my chin downward to my chest with my entire hand - gently about 15 times, then the same on my arm between my elbow and shoulder, then between my wrist and elbow.  Starting at the top/neck clears the "roadway".  I repeat this motion two or three times each time I massage.  You don't have to rub hard, a gentle rubbing gets the lymphatic fluid moving.  Good luck.

elmcity69

sharon - huge, huge congratulations on the 6month mark! yippee!

hope you did something fun to celebrate.

xo

janyce

AnacortesGirl

Sharon -

That's great that you've moved to the 6 month visit schedule! 

I wish I could send you to my PT.  She's been wonderful!  Most of my issues have been shoulder related but I did start of with mild lymphedema.  I got a couple of sleeves right away.  We wanted to nip it in the bud.   Once the fluid starts building it gets harder to move it out of the arm and into the body.  I'm not sure why Jenn's doc didn't want her getting one - it worked well for me to prevent the fluid from going down into the arm and start building.  I just had to make sure that I put it on first thing in the morning when the swelling was down.

Self message is easy to do - just like Jenn described.  Just a light touch is all it takes to get things moving.  But going to a PT that specializes in lymphedema is a really good idea because not only can they show you the correct way to massage (starting with the trunk and moving to the arm), they can also give you a series of exercises that increase the lymphatic flow.  They can find the "plugs" and clear them so the fluids will start moving again.  By the time you're done you'lll know how to take care of it yourself.

americanpinay

Congratulations on the 6-month schedule! 

No advise but sorry to hear about the lymphedema. 

mrsnjband

Hi Sharon,

Congrats on the 6 months, definitely a milestone.  If you think you are getting LE in your arm, you really need to find an LE therapist so that you can learn manual lymph drainage.   You can ask for a referral for an a LE therapist.  Just know that not all LE therapist are the same.  My first one was awesome, she taught me how to do it and it has helped a lot.  Do check out the LE boards a lot of great info & people there!  NJ

pupfoster1

Thanks girls!  I am happy, yet a bit apprehensive about the 6 month thing.  I was talking with a coworker who had gone to the same onc a few years ago, and her bc was not as advanced and they were still telling her to come every 3 months (she switched to a different doc a while back).  AND no blood work---the RN told me "too many false positives".  SOOOOO, just keep on keepin on!

The LE isn't too bad right now, but the onc did give me a list of therapists to call.  She said the same thing though that they are not all good, and it's hard to find a good one.  In other words, she wasn't recommending anyone on her list, which they usually do if they've had good experiences.

Anyway, thanks for all the well wishes!  It's nice to have something positive to post for once!!!

Love,

Sharon