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Topic: Lymphedema Questions

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 10, 2019 11:42AM

Bookworm14 wrote:

I had bmx in October and 16 nodes removed. Started with small swelling around upper area over elbow. I went to the lymphedema therapists on Wednesday where I was officially diagnosed with lymphedema. She only put this sports tape on the inside of my arm, back of the arm, and my back. I started turning red late Friday and started seeing a bumpy rash so I took off the tape since the office was closed. I have an allergy to latex and tape so I assumed the red and hot skin was from that. Woke up this morning to the arm being sore, red and hot skin still here, and a knot forming on the upper arm into the arm pit. This afternoon my hand is swelling along with the other stuff. At this point I do not know who to call. Is this a serious issue? My husband thinks I should go to the ER, but I do not want to panick or pay that stupid copay over something They can not help with. I am just really kind of mad considering none of this was happening until she put that stupid tape on me. any help or info you all can provide would be great

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 10, 2019 12:07PM Binney4 wrote:

Bookworm, your husband is absolutely right on this one. The symptoms you list might very well be cellulitis, which is a genuine emergency. Here's more information:

http://www.stepup-speakout.org/Emergencies_and_Med...

But don't stop and read that now--read it on your way to the ER, and when you get there be sure to mention "lymphedema" and "cellulitis" to everyone involved in your care in case they don't recognize it quickly.

Hugs, and please let us know how you are as soon as you're able,
Binney

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Mar 10, 2019 12:46PM Bookworm14 wrote:

Binney4

I put in a call to my oncologist just to make sure I was not having a reaction to my new Taxol. Waiting on him, but I did read that link you sent over. Keeping my fingers crossed that is not what is going on.

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 10, 2019 01:09PM santabarbarian wrote:

I think you should go to ER; your onc may not get this for hours. Tell them about Taxol too.

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Mar 10, 2019 02:25PM - edited Mar 10, 2019 02:29PM by JO-5

Bookworm,

As someone that has had cellulitis many many times in my LE arm......please go to the ER now.

Cellulitis can travel so fast and it can go systemic. It is NOT something you can WAIT on.

One of my episodes started and within 4 hours it traveled from my mid upper arm to over my shoulder. I was in the hospital 3 days on IV antibiotics. The others were not so serious and I was able to take antibiotics at home.

We are not overreacting. It has been 3 hours since you posted this. Is it still as you described or worse? Do you have a temp....even a very slight one.....perhaps a slight headache? You don't have to run a temp or have a headache for it to be cellulitis.

An allergy from tape CAN cause it.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 10, 2019 04:08PM - edited Mar 11, 2019 03:30AM by Bookworm14

thanks for everyone that posted. In the ER now. They think it is an infection, but they did an ultrasound as well to make sure it is nota blood clot. My Onco sent me straight over because he was worried about cellulitis as well. Keeping fingers crossed that I get to go home tonight.

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 10, 2019 04:09PM Bookworm14 wrote:

JO-5,


No temp, but I do have a slight headache. They said all the blood work is fine. Still red and hot so that has not gone down. Still waiting on test.

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 12, 2019 10:44AM Binney4 wrote:

Bookworm, thinking of you! Hope you've got some answers and are on your way to healing.

Gentle hugs,
Binney

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Mar 14, 2019 05:25AM Bookworm14 wrote:

Binney 4,

It was cellulitis for sure. They almost put me in the hospital, but luckily they just gave me oral antibiotics. Less red and painful today....although my hand and finger swelling is not going down as quickly. I’ve never had an infection like that... and hope never to again!!Thanks for checking in!!

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 14, 2019 08:01AM JO-5 wrote:

Bookworm,

Sometimes it takes two rounds of antibiotic, and it sounds like yours got a good start before the antibiotics.

Lots of water and elevate elevate elevate!

I wish you well......and no more kinesio tape. You didn't say....but since your LE therapist put it on I'm assuming it was that or something similar. I can not use it....because it causes a rash and then an infection.

Happy for you that it is on the run. Hope you don't have it again.

I never had lymphedema until I got cellulitus

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 14, 2019 01:28PM Bookworm14 wrote:

JO-5,

I had thoughts that it was from the tape, but the Onco and therapists said no. However, I did have a splinter stuck in my finger around that time so who knows. I am telling her to not put that on me any longer just to be safe. Everything seems to be getting better, but if he hand still has issues. I will def take your advice on elevating the arm. That really sucks that you did not have any issues until you had cellulitis. This breast cancer stuff just keeps on giving doesn’t it? 😟

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 15, 2019 12:21AM - edited Mar 15, 2019 12:23AM by JO-5

Yep ...splinter under the nail will sure do it. One of my episodes was from a needle stick. Was not using a thimble and the eye of the needle went in under the nail.

That was early on....I learned quickly to wear gloves when handling raw meat. Only have French manicured nails that I do myself.....because the clear polish does not have to be all the way to the cuticle. One of the worst episodes of cellulitis was from nail products with formaldehyde in it.

I don't do yard work without surgical gloves under my gardening gloves.

Not to upset you but it seems once you've had cellulitis you are more prone to get it again. So..... you can't be too careful.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 15, 2019 04:24AM Binney4 wrote:

Bookworm, thanks for checking back in. Good to hear you're on the mend. If further symptoms develop, though, do get help promptly. Whew!

The protocol for using kinesio tape for LE is to test a sample first on an area of the skin not affected by (or at risk for) LE, just to make sure there's no skin reaction. The reason for that is because a skin reaction to the tape can lead to cellulitis. Any compromise to the skin is a risk when LE is present. Like you, I have an allergy to adhesive on some areas of my body, so taping is not an option for me.

Kinesio tape is not generally considered a primary LE treatment. You'd want to start with Manual Lymph Drainage and wrapping to bring down any swelling. Compression garments and/or taping would then follow as a way to maintain the reduction. You might want to talk with your therapist about her treatment plan going forward, and if you aren't happy with it, consider a second opinion.

Stay well! And hugs,
Binney

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Mar 15, 2019 04:42AM Bookworm14 wrote:

JO-5,

I have been reading up on this and the first thing I found was to protect your hands and arms. Will definitely have to make that adjustment! I work in a warehouse some around metal, wood, and greasy stuff so this is a big problem unless I wear gloves. So crazy that it is the little things we never used to worry about is what will put your butt in the ER or hospital! Hopefully, I can watch myself well enough to not have it again, but at least I will know what it is if it comes back!


Binney4,

I went to see her today and mentioned no more tape. She agreed, but was adamant that had nothing to do with it. Told her to move forward with the wrapping and massage, but to never put any type of tape or anything with glue on me. Yeah she never tested it, but had told me to tape it and then a wrap this week. Massages as needed and then compression garments. Hopefully, we can get it worked out and get a decent treatment plan going.


Thanks for you both checking in. I hope you are both well!

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 16, 2019 05:24AM Bookworm14 wrote:

So.....

The oncologist cleared me to get wrapped since the arm looked great on Thursday. Got wrapped late Thursday. Today my hand swelled ever further starting at the knuckles up to midway on fingers. Nothing else swelled. This area was not as tight as the rest. So I guess the question is could the infection be spreading or coming g back or does the therapist just not know what they are doing? Or did we wrap it too soon?Took the wrap off and swelling is going down quite a bit.

Just trying to figure out if any of you have dealt with this

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 16, 2019 10:43AM JO-5 wrote:

I hate to always seem pessimistic, but it seems too soon to wrap to me.

I've told on here that I never have had hand swelling.....I forgot that I did when I was wrapped the first time. My hand not only swelled by the time I drove home but was turning blue. Ya think it might have been too tight?.

I took it off as soon as I walked in the door and my hand went back to normal.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Mar 16, 2019 12:21PM Bookworm14 wrote:

JO-5

Took the bandage off and went down, but I have noticed that if I use the arm too much today the hand wants to swell up again. Just sucks that until that tape was put on I had not had any problems. Only minor swelling right around my elbow.

Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 22, 2019 12:09PM - edited Apr 23, 2019 11:41PM by Bookworm14

okay I am beginning to think that this LE therapist may not know what she is doing. Hardly any swelling in my hand until she wraps me in compression bandages and now my fingers and hand stay swollen. She finally ordered me compression garments after seeing me for three weeks. Could not see her to try on the garments so brought hem home over the weekend and wore the sleeve and glove for 1.5 hours. My hand and fingers got so swollen that I had to take off the glove and the sleeve! The wrist area is so tight that you can see the skin bulge around it, the top of the sleeve leaves indentions in my skin for at least 1/2 hour after taking off the sleeve. I put the glove back on because my hand was so swollen that I could not even make a fist. Wore the glove for a couple of hours and then massaged the are. Swelling finally went down to what isnow my normal. Has anyone dealt with the sleeve causing the hand and finger Lymphedema to get worse? Did she just get me the wrong size...she said if I wore the garments that they could not be returned. Any help or information would be greatly appreciated. Forgot to mention that no one else in my city deals with lymphedema.



Diagnosed @35, BRCA2 + Dx 8/7/2018, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- Surgery 10/15/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 10/25/2018, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/16 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2018 AC + T (Taxol) Radiation Therapy 5/22/2019 Whole-breast: Breast, Lymph nodes, Chest wall

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