Mostly hands and fingers???

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Akitagirl
Akitagirl Member Posts: 142
edited March 2015 in Lymphedema

Dear All,

After my double MX with a ALND on the left side (which I struggled with consenting to) I went two months without any LE. Then, after my second round of chemo, had enough energy to lace up my figure skates and take a spin (literally). The next day, I noticed my arm was a bit swollen as was my hands...sure enough, LE showed up without an invitation from me. Of course, I immediately went to the BS who then referred me to PT, and the journey of wrapping began. I won't even begin my rant of how they should have sent me immediately to PT after surgery to get a sleeve to PREVENT the LE when I went to skate...that's a different story.

Fast forward two months...finally finished chemo. I am blessed to have received the flexi-touch pump arm/torso pump (rocks!) which I use faithfully each night. I also finally received my compression sleeve/glove/gauntlet. Over the past week I have tried every combination and nothing seems to help with the hand/finger!!! I am so frustrated!!!! My arm is looking so much better - almost the exact same measurements of my right arm. Every morning I wake up to just a tad swelling in my hand/fingers. I do some manual lymph massage to get it down, put the garments on, and by noon, I can tell the back of my hand is puff the magic dragon and my fingers look like sausages.

Last two nights, I tried just wrapping my fingers hand with stretchy gauze...and bingo! I wake up to a normal looking hand! Now...my question is - what do I do next? Yesterday I went ahead and just tried wearing a glove, but I could then see my wrist puffing up. Today I am trying the gauze wrap under my gauntlet with the sleeve. But it sure is damn ugly. Does anyone else have this very specific problem? I am so depressed with this. It's my left arm, I love my wedding rings, I play piano and hate my hand doesn't move as fast as needed. I just need some ideas. Anyone???

Thank you for listening!!!

All my best,

Akitagirl

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited March 2015

    You might need a full glove rather than a gauntlet. I have a glove, but the "fingers" only extend to the first knuckles, and as I tend to get swelling affecting the "thumb half" of my hand, I find it makes the thumb and first finger swell from the knuckle down. Full gloves I think have to be custom made, so are more expensive, but that may be the way to go.

    I can't work in a glove anyway, for hand hygeine reasons in health=care, so the whole thing is a bummer. If I wear the sleeve alone my whole hand sewlls, :(

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2015

    Akitagirl, sorry to hear you are going through this. I wish you all the best. I see you finished your chemo!! Congrats! I did too, doctor did not recommend doing the extra 2 treatments for me. The last was a killer for me. Felt so tired, achy, loss of taste just seemed like forever before it slowly came back. My skin feels funny, sores on the back of my heels of my feet followed by peeling. Just starting to feel somewhat better, but still tired. How about you? I have also been seeing PT for possible truncal/chest lympedema, but no one can seem to say whether I have it for sure. Doing lots of exercises, have numbness in the tissue expander, sometimes pins and needles in the upper shoulder, but not sure that this isn't due to the tissue expanders. Every once in a while it seems to feel like it is swelling up and rock hard. Under my arm is numb, they say it could be from the tissue expander pressing on nerves as it being filled, but I don't know. Hate when no one can really answer or tell you anything. But that seems to be the way everything goes for me. What is a flexi pump for arm/torso? I have never heard of that.

    So now that you are done...how are you doing moving forward? I seem to be having difficulty. Worry alot. If you have any secrets to share about moving forward please pass along because I can sure use it!!!!

    Hugs...

    thinking positive

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    A glove instead of a gauntlet might help. A gauntlet would be nice for me as it would solve the issues with my slightly webbed fingers. (All my garments have to be custom and we finally got them right.) I do not normally have any hand/finger swelling and I do have one gauntlet that I use for short times when working the horses as I need better 'feel' than I get with a glove. The other thing that I can think of is that you may have the wrong compression level. I have to have low level compressing as high makes my hand swell and fingers turn into sausages within an hour so for me low is what I have to have.

    You mentioned that you get some hand swelling at night - do you wear a night garment? My Solaris Tribute has a gauntlet style hand and with it alone I did get some hand/finger swelling but that was solved by using a medical opera length Isotoner under it. That very small amount of compression it offers to hand works great for me. It was my LET guy that came up with the idea to use the long Isotoner and it definitely does work for me.

    Love my FlexiTouch and would be 'lost' without it.

    Added - Thinkingpositive - A FlexiTouch is a machine that simulates Manual Lymphatic Drainage. It's program starts by gently massaging the upper leg/lower body to encourage the nodes to be drained, then it moves to the upper body/chest area, then to different set times of the arm ending at the fingers. This takes about 1/2 to work through the sections section by section. The next 1/2 hr it 'rolls' continually from the fingers to the upper leg to assist in draining the fluid.



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  • ciaogina
    ciaogina Member Posts: 43
    edited March 2015

    Akitagirl---I feel your pain. I have similar issues but only on my right side. I had a bilateral mastectomy on 10/27/14. My BS mentioned lymphedema but said I probably wouldn't get it, and quickly brushed the topic away. GRRRRR! A glove with each finger might help you as the others mentioned. I had a gauntlet, but it's mostly in the thumb part of my hand. My new PT recommended a glove, and it is much more supportive, although I hate wearing it. The whole thing made me really depressed. My fingers aren't swollen, but I'm paranoid that they might start. i don't wear the glove as much as I should only because I am always cooking or cleaning something! I will wear rubber gloves over it while cleaning, but find that it is too constricting. I also like to exercise a lot, so will wear my sleeve and glove while running or exercising. Have you looked into lymphedeva's? My pt ordered me two cool patterned sleeves from there. Only thing is their gloves don't come in the patterned styles, only gauntlets. But she ordered me a beige and a black glove. i honestly hate wearing it, so I know how you feel. Also, I am getting fitted for a night glove, you should ask your pt about that too. I'm trying everything to minimize wearing it during the day. this totally sucks. We didn't ask for this. I had no idea that LE would appear so quickly after my surgery. Also, my glove goes pretty high up above my wrist. She said i can wear it alone, but recommends wearing it with the sleeve. Look into the lyphedevas, they do have nice patterned sleeves! Hope you get some relief! Oh--I forgot to mention that I had 27 nodes removed.

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  • Akitagirl
    Akitagirl Member Posts: 142
    edited March 2015

    Hi Everyone,

    Thank you so much for your input!

    ThinkingPositive - Yes! I am finished with my four rounds of TC and now just on Herceptin - which is a walk in the park. Each day my energy comes stronger and stronger. I am still dealing with systemic edema, have switched to a stronger diuretic - which is working some. My MO told me to hang in there, it often takes 3-4 months for the swelling to subside. I definitely think this is also impacting my LE, so I still have hope that this will all come into a groove sooner or later.

    Here is what I have discovered this last week. I do the full hour of pumping each evening. In the morning, if I wake up and can see the tendons in my hand and my arm feels soft and not heavy...then I choose to NOT wear anything - as long as I am just sitting at my desk working. Every hour or two, I stand up and do a few yoga poses and lymph drainage exercises. The biggest thing that has helped this week is finally returning to working out!!! I am slowly gearing up for the Boulder Bolder 10K run. So, before I start exercising, I put on the glove and sleeve. I do a full run, lift weights, do squats, do some arm-specific yoga poses and stretch. Then I drink tons of water, wait an hour and remove the sleeve/glove. I cannot even begin to say how much this has helped!

    The other thing I realized is that I am (and always have been) super sensitive to sodium. Fortunately we do not eat out much, as we love to cook, but when we do, I pay for it the very next day.

    I continue to pray for improvement as the systemic swelling resolves and my body returns to normal. In the meantime, we just continue to march ahead and adjust as needed.

    Akitagirl

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2015

    Akitagirl - We each have to learn what works best for us as we are each unique and there is no 'No Size Fits All' as to how to individually handle our issues.

    Have you tried using your FlexiTouch in the morning? I find morning works better for me as it drains before getting active for the day (I have done nights a few times when situations necessitated thatbut not as good results). Night garments work on passive (as in you are not moving around/sleeping) while day garments work on active (while up and moving).

    For me, just sitting at a desk would do more harm than good (especially without sleeve/glove). The more active I am the better. So it is worse in winter (as our winters are bruta) than summer. Basically, other than barn chores, about all the active 'stuff' I do is at the base gym. Summer, I'm riding (horses and bicycles) a lot, fly fishing, mowing with my push mower (my yard and several other ones to help out some young and old who it helps, other 'stuff' too. I do not 'run' - swore when I got out if the Army I would never run again unless it was in a life/death issue at the moment for me or someone else. I do do the Crazy Horse Memorial Volksmarch annually though.

    It was 9 weeks post surgery when my LE presented itself. 3 weeks post surgery started 12 weekly Taxol (had done 4 DD A/C neoadjuvant).



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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2015

    Akitagirl..so glad to hear you are doing well and you have finished with TC treatments. I believe we finished the same day! So far so good for me, still feeling tired but everyday gets a little better. Still unresolved issues with LE...not knowing whether I have truncal or chest LE... my cording pain gets worse with each fill and that is starting to worry me as to whether its from the fill or not. Seems like you are doing good with getting out there and exercising. I need to start doing that. I just got my first appt with nutritionist, its part of the Cancer Wellness Program. So I meet with her for two appts.. then meet with someone who will design a workout program for me to do at the wellness center (three months free), yoga classes for three months and two massages. All part of the program and free. Its a start for me... also need to work on getting thoughts out of my head...any suggestions on how to do this??

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