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Topic: Lymphedema Medical Alert

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

Posted on: Dec 15, 2018 03:44PM

viewfinder wrote:

I'm going to order a Lymphedema Medical Alert Bracelet. Any advice what to put on it?

I know it should mention Blood Pressure and Needles. What about IVs?

Thank you.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 15, 2018 05:46PM - edited Dec 15, 2018 05:48PM by JO-5

I have one that opens and a small list on paper fits inside, so I am able to put a lot of info on mine.

If I was limidited I would put lymphedema no needles no bp rt arm.

(or lft arm)

If all that did not fit omit lymphedema. Most do not know what LE even means.

JO-5


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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Dec 15, 2018 05:51PM viewfinder wrote:

Thank you, Jo!

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 15, 2018 06:35PM gb2115 wrote:

I put no bp or needles right arm. Lymphedema risk breast cancer.

I have a medic alert and I wear it on the opposite side because I don't like how it makes marks on my skin when I write or use a mouse.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Dec 15, 2018 06:42PM viewfinder wrote:

Thank you gb. What material is your bracelet?

The one I'm ordering has a Silicone Band. I personally didn't care for several others I looked at, some very expensive. My daughter makes jewelry and I'll eventually have her make me a bracelet.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 15, 2018 06:58PM MCBaker wrote:

Mine says "No vp/bp rt arm". It has a phone number and case number for detailed medical information. I can get online and change it as situations change. I ordered it immediately after surgery, and the cs rep knew what I needed. This is the original Medic Alert company.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/16/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Targeted Therapy 12/19/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Targeted Therapy Nerlynx
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Dec 15, 2018 09:02PM Spookiesmom wrote:

Yes, I wear MedicAlert bracelet too. The original. I love they have ALL my info. Worth the yearly cost. Mine says No vp/bp lt arm. Plus other info.

Dx IDC, Stage IIIA, Grade 3
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Dec 15, 2018 10:57PM - edited Dec 15, 2018 11:21PM by viewfinder

I never heard of MedicAlert. How much does it cost a year?

I understand that I am low risk for lymphedema but I though I should have one. At 74, I don't have a memory like I used to so it's better to be safe than sorry. I've had my training about lymphedema and my arm has been measured. If I decide to travel on a plane, I will need to get compression sleeve.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 15, 2018 11:10PM Spoonie77 wrote:

I had not even thought of this, but it's really something important to put on my list and get taken care of asap. Thanks so much for sharing!

I second Viewfinder and am wondering if there is a subscription and how that works? Whenever I had thought about medic bracelets before they were just that, bracelets with engraved alert info.

Fill us in when you get some time. Thanks in advance. :)

DX @ 41 Lump/RADs, declined Tamoxifen due to my SPOONIE life. Hanging on by a thread some days, but hey, I'm still hanging on! Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 16, 2018 06:57AM gb2115 wrote:

I think mine is stainless steel. It's not pretty but it's durable. The purchase comes with a year's subscription, which you can renew or not. The subscription means if EMS finds you they can access whatever medical history you enter into the system. ER staff can do it too, in the event you are unconscious and can't speak for yourself. Can also put them in touch with next of kin.

I like it because there's no room on my bracelet for my adhesive allergies from Hell. If a quick phone call prevent them from putting dermabond on me, that's worth $20.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Dec 16, 2018 09:54AM - edited Dec 16, 2018 04:34PM by SpecialK

Here is a link for the Medic Alert company. The bracelets are functional but do the job - and I would caution against bracelets that are more fashion oriented - you want something that catches the attention of whatever emergency responder is present, and is not mistaken for regular jewelry. Additionally, I would skip using the word "lymphedema" in a small space on the bracelet, instead use NO IV/NEEDLES/BP and designate which arm. You might be surprised how many first responders do not know what lymphedema is, so being more direct is a better idea. My son is a firefighter/paramedic and I had him survey his station, most of the EMTs did not know much about lymphedema. I have a bracelet from Road ID - it has a pretty good amount of room and I added the caduceus and the bracelet is red silicone - I use this when I exercise. Road ID also has the capability to store medical information for a small fee, although I did not subscribe, just purchased the bracelet with the info. I also have a gold bracelet with a prominent caduceus and the medic alert shape of the ID part conveys the purpose - it is long enough to include the information I need.

https://www.medicalert.org/

https://www.roadid.com/products/elite-plus-stainless-pin-tuck-id-bracelet

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Dec 16, 2018 02:28PM Spoonie77 wrote:

Thanks SpecialK for the info and advice. Surprising that EMT and such do not know what Lymphedema is, yet, they do have alot of knowledge to store in their brains for the everyday emergency response so it's hard to blame em'! I'll give those links a look see. Thanks again!

DX @ 41 Lump/RADs, declined Tamoxifen due to my SPOONIE life. Hanging on by a thread some days, but hey, I'm still hanging on! Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 16, 2018 02:35PM pupmom wrote:

Mine says "No BP/IV/IM." I wear it on my right arm, which is where the nodes were taken.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Dec 16, 2018 03:15PM KBeee wrote:

Put it on the affected arm.

I am a firefighter/paramedic, and if I took that arm for a blood pressure or IV, I would see it there as I am grabbing the arm to put the BP cuff on or look for an IV site...even if you forgot to tell me. If it is on a necklace, I might not see it. Make it an obvious medic alert bracelet, and do not have 10 other watches and bracelets on that arm. It will get hidden by them, and no provider is going to sift through 10 bracelets to see if one happens to be a medical alert tag...... not because we are lazy, but if the situation is that critical that we'd need to know and you could not tell us, we'll be very busy doing and assessing other things to figure out and treat what's wrong.

I have been in EMS for over 20 years, and even with a mom who had lymphedema from BC, I did not understand the reasons until I was affected with BC (my mom really was not told to avoid that arm for things, nor was my mother-in-law who is also affected). It is not something routinely taught in most EMS curricula for EMTs or paramedics, though I do think it is getting more attention now than it had in the past. I was asked many times to avoid an arm, and always honored it...obviously I still do!

I have also had many nurses I've had to remind. As much as I would like everyone to just "know", I consider it my responsibility to remind them because ultimately it'll be me who could potentially suffer if a mistake is made.

Make sure your family members know so they can alert medical personnel as well. The bracelet serves this purpose well. Understand that providers will do everything they can to honor that, but in a life or death situation, sometimes they'll have to use the arm. I can think of only one time in 30 years I have had to do this.

Honestly, I would just put the info on the bracelet. You probably do not need to subscribe. I have in 30 years of EMS, never called that number to get the info. I am sure others have, but in cases where it would have been helpful, the person did not have a bracelet, and in cases where someone had a bracelet, I always had family there, or their info was in their phone. Remember that you can put emergency health info in your phone and that responders can access it without your phone code with most phones (on mine, you just hit home to unlock, hit "emergency", and then "medical ID" in the corner.) When I have an unconscious person who does not have a bracelet, this is the first thing I'll look for.


Hopefully this is helpful for some of you.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Dec 16, 2018 03:26PM viewfinder wrote:

Very helpful, KBeee. I have my medical information and ICE information on my phone, that does not need a code to access it. I bought a bracelet that looks like an obvious medical alert, not like jewelry. Thank you for your devotion to helping others!

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 16, 2018 03:41PM Spoonie77 wrote:

I agree, thanks so much KBEee! That information you shared is all very helpful. :)

DX @ 41 Lump/RADs, declined Tamoxifen due to my SPOONIE life. Hanging on by a thread some days, but hey, I'm still hanging on! Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 16, 2018 05:10PM - edited Dec 16, 2018 05:14PM by Spookiesmom

Thank you!!!!!

Also with MedicAlert, they have my ICE #,known medical conditions, current meds, PCP name, phone#, blood type, living will, DNR Good things for ER to have if I can't speak.

Dx IDC, Stage IIIA, Grade 3
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Dec 16, 2018 06:08PM GG27 wrote:

I don't know that many women have the problem that I do, I don't have a good arm having bilateral breast cancer with nodes affected on both sides. I work hard at not getting lymphadema again as I had a mild case when I first had surgery.

I have a very hard time getting my port used for everything and I can't imagine having to wear a medic alert bracelet on both arms. Any thoughts on what I could do? I have a medical alert on my phone which you don't need my password to access. thanks for any thoughts.

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/6/2009 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone, 9/20 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 5/19/2014 Arimidex (anastrozole) Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Dec 16, 2018 11:03PM KBeee wrote:

GG27, I would ask a Lymphedema therapist for advice. Injections can be given elsewhere and IVs can be started in the leg, but blood pressure is trickier.

If one arm had less nodes taken than another, then that would be the best choice, but I would see what the Lymphedema specialist recommends. My mom has had bilateral breast cancer too. Though I have not had cancer on both sides, I did have 2 nodes removed from that side in a biopsy a year before my BC.... so I am potentially at risk on both sides too, though much lower risk on my L side

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Dec 16, 2018 11:34PM - edited Dec 17, 2018 10:05PM by SpecialK

I have had bi-lateral nodes removed, ALND on the right side, and have diagnosed lymphedema on that side. I did use my port for blood draws over the six years I had it - until removal in 2016. I have allowed blood draws on the left arm. I am an easy stick and I have had no problems - so far. I also allow BP, but do request it be done manually if possible, not by machine - as it feels gentler, and my PS uses a wrist reader which is nice. For surgery my BP has been on the ankle with a machine. Only offering this info, not advising or recommending this course of action. It has worked for me, but I think everyone has to decide their own risk tolerance coupled with medical advice.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Dec 17, 2018 03:11PM MinusTwo wrote:

Special is right - everyone has to assess their own risk tolerance.

I also was bilateral with serial nodes taken and then ALND after recurrence on the right w/more nodes taken. I was diagnosed with truncal & breast LE and I'm extra cautious to try to keep it from going to my arm (s).

I do NOT allow ANY BP on the ALND side, but do allow only manual BP on the left side.

I do NOT allow any sticks on either side. For a blood draws, they have to use my foot or ankle once my port was removed. This is extremely challenging even living by the 3rd biggest medical center in the US. No one is trained to draw blood from a foot. Only one in three MAJOR hospitals would even discuss it and I have to go to the head of the blood donor center. This of course applies to anesthesia too - like for a colonoscopy.

For a flu shot or other injections, I have to find someone who will give it in my butt or thigh. More difficult than you'd think.

I ordered free LE wrist bands from Penninsula BioMedical. Their link is below. I'm not sure they are still offering the free bands but there is good info & you can buy a wrist bracelet. http://www.lymphedema.org/

And whenever I have to have anesthesia - I write all over both arms with magic marker - no sticks, no BP, no IV. Of course my grown son thinks I'm nuts, but I am NOT even a little risk tolerant.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 17, 2018 03:16PM MinusTwo wrote:

BTW - for those of you who are new to LE, this is a wonderful site with lots of recommendations. It was created with much input from several caring BCO ladies.

https://www.stepup-speakout.org/


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 17, 2018 04:34PM viewfinder wrote:

Lots of good information here! Thanks for sharing.

I have to remember that about the magic marker. I remember many years ago reading a news story that a man had his wrong leg cut off. Can't been to careful. We have to double check and watch out for our own selves.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes Surgery 7/10/2018 Lumpectomy: Left Radiation Therapy 9/14/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole) Surgery
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Dec 17, 2018 05:22PM KBeee wrote:

Minus Two, I think you are very wise to do that. I do not know why health care folks are so afraid to start an IV or draw blood from a leg. Frustrating. Blood does not just circulate through our upper body!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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