Help me please... Lymphadema
Sorry I'm venting but I am miserable right now.
Hugs and God Bless,
Dawne
Comments
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awww Dawne so sorry you are having a hard time. UGH!!!!!! So sorry. I am not experiencing this, but my Dr. suggested acupuncture and special massages (not the average massages you get at spas). Apparently some medical facilities provide these types of services, because they deal with patients like us in a daily basis. So they understand the movements and steps to take. You may want to find out through your clinic if they offer these kinds of services, or perhaps they can give some info. on outside experts.
I so much wish you recover Dawne. Prayers are always with you. With all of us.
Big hugs to you. And I hope you feel better sooner than you expect.0 -
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,
Sylvia0 -
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,
RE0 -
Sweet girl..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
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,Nancy0 -
Dawne
I have had to deal with lymphedma as well. At my rad onc suggestion I went to a therapist that specializes in treating this problem. She did a massage and taught my husband how to do it so he could do it for me at home. It was a great help. She also had me get a compression sleeve. Mine has improved and only bothers me on occassion now. I hope you can get the same relief.
Hugs,
Georgia0 -
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
Susan0 -
Just a thoughtMAJW said: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
If your sleeve makes your arm worse you may have the wrong level of compression in you sleeve. Heavy compression makes my hand arm puff up like a blowfish - light compression works great. My guy wanted to start with heavy and when I picked it, put then on and left there and got to Rads 45 minutes later hand/arm had almost doubled in size. Just a thought.
Winyan - The Power Within
Susan0 -
lymphedema
good advice by all respondents. and don't forget - NO needles, NO BP on affected (impaired) side! EVER!!
Good luck0 -
Melainedoingwell .. is right -- Never, EVERMelaniedoingwell said:lymphedema
good advice by all respondents. and don't forget - NO needles, NO BP on affected (impaired) side! EVER!!
Good luck
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 Sam0 -
Waiting for my DrVickiSam said: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
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,
Dawne0 -
So sorryTexasgirl10 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
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.
marge0 -
Dawnemwallace1325 said: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
Geeez you sound so misserable, I wish I was there to help you!
We are all here praying for you and hoping you get some relief.
Cancer truly sucks!!!!
I hope your doc will help you, please let us know.
BIG HUGS....Karie0 -
Certified Lymphede Therapistmom62 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
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.0 -
lymphodemaRague said: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
Great advice!! I've had it for 14 yrs. Treating it for 12. A specalized therapist is the only way to go. I also have a Flex-I-Touch pump. God Bless0 -
lymphodemaTexasgirl10 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 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 send0 -
Thanks for this video Re!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
Thanks for this video Re!0 -
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.0 -
No, never get anything doneVickiSam said: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
No, never get anything done with the arm that you had lymph nodes removed from, no blood taken, no blood pressure, no shots at all in that arm.
Thinking of you and praying Dawne,
Lex0 -
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 ...
Laura0
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