lymphodemia

rjjj

Hello friends
I got to one of my apts. today to see my surgeon over my big puffy hand/arm i missed my other to apts. with PT and a ultra sound on my neck vein to check for clots because i missed their message on my phone (kemo-sabe brain) My Dr. says they will do an ultra sound and PT will pump it with kind of an electronic massage thing that i can rent and THEN put my sleeve on. So i will go back in on Tues. for these apts. and Wed. for my 3rd chemo treatment.
My chemo NR. said there are other things i can do such as massages, excersizes etc. so i am going to look these things up.. if any one know of things i can do to help this please let me know. I have been keeping it elevated in the meantime and putting ice on it BRRR!
I hope all of you have a good night and sweet dreams.
God Bless
Jackie

lynn1950

didn't read it.
Jackie,
I am
didn't read it.
Jackie,

I am so sorry you are having swelling and pain. I don't know anything about a pump to drain extra fluid out. Cancer is the gift that keeps on giving. I don't know about you, but I am SICK of medical appointments!

Introduction to lymphedema came later in my cancer career, as I was having rads. Even then it seemed to me like too much information. Once you are diagnosed with cancer there's so much to learn and you have to learn it fast!

Is your physical therapist a lymphedema specialist? He/she can show you how to massage your left side to help move the lymph fluid from your arm to where it is supposed to go. My PT showed me 10 steps (and some special ones, because of my port). I had a complete lecture on the lymphatic system first - it helped make the massage steps make sense. You can manually move the fluid. Step 1 is either neck exercises (because of having a port)or a "pump" action above the collar bones, once the port is removed. (That day will come!) Step 2 is 10 deep diaphragmatic breaths, blowing out like you're blowing out 50 candles. Step 3...well this isn't going to make a whole lot of sense to you without diagrams, etc. She also showed me exercises to help keep the circulation going.


This is from the Mayo Clinic:

Lymphedema can't be cured. Treatment focuses on minimizing the swelling and controlling the pain. Lymphedema treatments include:

* Exercises. Light exercises that require you to move your affected arm or leg may encourage movement of the lymph fluid out of your limb. These exercises shouldn't be strenuous or make you tired. Instead, they should focus on gentle contraction of the muscles in your arm or leg. Exercises help pump the lymph fluid out of your affected limb. Your doctor or a physical therapist can teach you exercises that may help.
* Wrapping your arm or leg. Bandages wrapped around your entire limb encourage lymph fluid to flow back out of your affected limb and toward the trunk of your body. When bandaging your arm or leg, start by making the bandage tightest around your fingers and toes. Wrap the bandage more loosely as you move up your arm or leg. A lymphedema therapist can show you how to wrap your limb.
* Massage. A special massage technique called manual lymph drainage may encourage the flow of lymph fluid out of your arm or leg. Manual lymph drainage involves special hand strokes on your affected limb to gently move lymph fluid to healthy lymph nodes, where it can drain. Massage isn't for everyone. Avoid massage if you have a skin infection, active cancer, blood clots or congestive heart failure. Also avoid massage on areas of your body that have received radiation therapy.
* Pneumatic compression. If you receive pneumatic compression, you'll wear a sleeve over your affected arm or leg. The sleeve is connected to a pump that intermittently inflates the sleeve, putting pressure on your limb. The inflated sleeve gently moves lymph fluid away from your fingers or toes, reducing the swelling in your arm or leg.
* Compression garments. Compression garments include long sleeves or stockings made to compress your arm or leg to encourage the flow of the lymph fluid out of your affected limb. Once you've reduced swelling in your arm or leg through other measures, your doctor may suggest you wear compression garments to prevent your limb from swelling in the future. Obtain a correct fit for your compression garment by getting professional help — ask your doctor where you can buy compression garments in your community. Some people will require custom-made compression garments.

In cases of severe lymphedema, your doctor may consider surgery to remove excess tissue in your arm or leg. While this reduces severe swelling, surgery can't cure lymphedema.



I am hoping that you have a good night's rest tonight and that all goes well tomorrow.

Love, Lynn

rjjj

lynn1950 said:

didn't read it.
Jackie,
I am
didn't read it.
Jackie,

I am so sorry you are having swelling and pain. I don't know anything about a pump to drain extra fluid out. Cancer is the gift that keeps on giving. I don't know about you, but I am SICK of medical appointments!

Introduction to lymphedema came later in my cancer career, as I was having rads. Even then it seemed to me like too much information. Once you are diagnosed with cancer there's so much to learn and you have to learn it fast!

Is your physical therapist a lymphedema specialist? He/she can show you how to massage your left side to help move the lymph fluid from your arm to where it is supposed to go. My PT showed me 10 steps (and some special ones, because of my port). I had a complete lecture on the lymphatic system first - it helped make the massage steps make sense. You can manually move the fluid. Step 1 is either neck exercises (because of having a port)or a "pump" action above the collar bones, once the port is removed. (That day will come!) Step 2 is 10 deep diaphragmatic breaths, blowing out like you're blowing out 50 candles. Step 3...well this isn't going to make a whole lot of sense to you without diagrams, etc. She also showed me exercises to help keep the circulation going.


This is from the Mayo Clinic:

Lymphedema can't be cured. Treatment focuses on minimizing the swelling and controlling the pain. Lymphedema treatments include:

* Exercises. Light exercises that require you to move your affected arm or leg may encourage movement of the lymph fluid out of your limb. These exercises shouldn't be strenuous or make you tired. Instead, they should focus on gentle contraction of the muscles in your arm or leg. Exercises help pump the lymph fluid out of your affected limb. Your doctor or a physical therapist can teach you exercises that may help.
* Wrapping your arm or leg. Bandages wrapped around your entire limb encourage lymph fluid to flow back out of your affected limb and toward the trunk of your body. When bandaging your arm or leg, start by making the bandage tightest around your fingers and toes. Wrap the bandage more loosely as you move up your arm or leg. A lymphedema therapist can show you how to wrap your limb.
* Massage. A special massage technique called manual lymph drainage may encourage the flow of lymph fluid out of your arm or leg. Manual lymph drainage involves special hand strokes on your affected limb to gently move lymph fluid to healthy lymph nodes, where it can drain. Massage isn't for everyone. Avoid massage if you have a skin infection, active cancer, blood clots or congestive heart failure. Also avoid massage on areas of your body that have received radiation therapy.
* Pneumatic compression. If you receive pneumatic compression, you'll wear a sleeve over your affected arm or leg. The sleeve is connected to a pump that intermittently inflates the sleeve, putting pressure on your limb. The inflated sleeve gently moves lymph fluid away from your fingers or toes, reducing the swelling in your arm or leg.
* Compression garments. Compression garments include long sleeves or stockings made to compress your arm or leg to encourage the flow of the lymph fluid out of your affected limb. Once you've reduced swelling in your arm or leg through other measures, your doctor may suggest you wear compression garments to prevent your limb from swelling in the future. Obtain a correct fit for your compression garment by getting professional help — ask your doctor where you can buy compression garments in your community. Some people will require custom-made compression garments.

In cases of severe lymphedema, your doctor may consider surgery to remove excess tissue in your arm or leg. While this reduces severe swelling, surgery can't cure lymphedema.



I am hoping that you have a good night's rest tonight and that all goes well tomorrow.

Love, Lynn

Thanks Lynn
Thank you for all your information. I think the pump they are going to use or have me rent is the pnuematic sleeve that you mentioned. The Dr. said i would probably only need it once or twice and the Physical Therapist told me very rudely that he" could give up his lunch hour to teach me how to use it but i would have to rent one to take home to use all the time" He didn't offer any other advice (and i even had the order to see them from the DR. in my hand. I told him i would be back to see someone else next week and made another apt. It just seems some people have no clue! turns out he isn't a lymph. specialist so i was as lost after i went their as before.
This all was very upsetting to me and my husband as we have been worried about clots. I guess i will just learn all that i can before going in on Tues. and hope the next so called "professional" has a little more compassion. Sorry didn't mean to rattle on this way. I really do appreciate all the information you have given me as well as all i have recieved from all the sweet survivors here. I luv you all.
God Bless
Jackie

fauxma

rjjj said:

Thanks Lynn
Thank you for all your information. I think the pump they are going to use or have me rent is the pnuematic sleeve that you mentioned. The Dr. said i would probably only need it once or twice and the Physical Therapist told me very rudely that he" could give up his lunch hour to teach me how to use it but i would have to rent one to take home to use all the time" He didn't offer any other advice (and i even had the order to see them from the DR. in my hand. I told him i would be back to see someone else next week and made another apt. It just seems some people have no clue! turns out he isn't a lymph. specialist so i was as lost after i went their as before.
This all was very upsetting to me and my husband as we have been worried about clots. I guess i will just learn all that i can before going in on Tues. and hope the next so called "professional" has a little more compassion. Sorry didn't mean to rattle on this way. I really do appreciate all the information you have given me as well as all i have recieved from all the sweet survivors here. I luv you all.
God Bless
Jackie

So Sorry about all this
Jackie,
So sorry that you have had this problem with the PT. One of the things that I like with my health care group is the coordination that went on. After diagnosis you see the breast care specialist, then your surgeon, then the oncologist, then the the radialogist. They each explain what is going on, what to expect, your diagnosis and treatments plans etc. In addition, they send everyone to a group class (these are held the 1st Monday of each month) regarding lymphodema. They explain what it is, how to do self massage, talk about the compression garments, exercise, what to avoid and they let you know that if you have more concerns or start to have problems that they have a special lymphodema therapist that you can make an appointment with. You can make one that day or make one later if needed. I saw her when I had some leg problems from my uterine cancer treatment and she was great. All hospitals and treatment facilities should have this type of service and many do but I am sure in some areas this is less possible. Just be your best advocate in seeking treatment. You may need to get in their faces to get the response you need, but if you must then do it.
I hope that you get answers soon.
Stef

lynn1950

rjjj said:

Thanks Lynn
Thank you for all your information. I think the pump they are going to use or have me rent is the pnuematic sleeve that you mentioned. The Dr. said i would probably only need it once or twice and the Physical Therapist told me very rudely that he" could give up his lunch hour to teach me how to use it but i would have to rent one to take home to use all the time" He didn't offer any other advice (and i even had the order to see them from the DR. in my hand. I told him i would be back to see someone else next week and made another apt. It just seems some people have no clue! turns out he isn't a lymph. specialist so i was as lost after i went their as before.
This all was very upsetting to me and my husband as we have been worried about clots. I guess i will just learn all that i can before going in on Tues. and hope the next so called "professional" has a little more compassion. Sorry didn't mean to rattle on this way. I really do appreciate all the information you have given me as well as all i have recieved from all the sweet survivors here. I luv you all.
God Bless
Jackie

Lymphedema specialists
Jackie, Try googling "lymphedema specialists" and include the closest city in your Google. You may be able to find one that way. I tried it on my computer for the biggest city near me (2+ hours away!) and came up with 5, including the one I see. Hope the swelling and pain are gone - and if not gone, then gone soon. Hugs to you. Lynn

Jan_M

lymphodemia
I hope your Dr. appt.s all went well. Keep us up on how you are doing. You are in our prayers.

Chellebug

lynn1950 said:

Lymphedema specialists
Jackie, Try googling "lymphedema specialists" and include the closest city in your Google. You may be able to find one that way. I tried it on my computer for the biggest city near me (2+ hours away!) and came up with 5, including the one I see. Hope the swelling and pain are gone - and if not gone, then gone soon. Hugs to you. Lynn

APTA
Jackie, You might also be able to find a lymphedema specialist near you through the American Physical Therapy Association. Use the suggestion Lynn gave you and if that doesn't help, try the APTA. You deserve a PT who knows what he/she's doing.