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Topic: Advice needed, kinda freaking out!

Forum: Lymphedema —

Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Sep 3, 2021 08:17PM

Dani444 wrote:

hello everyone I have already posted about this situation over on the pain forum but I could use some advice! Here goes my story! I am experiencing pain that starts in my armpit and extends to the bend of my arm. I also have a knot that I can feel in the bend of my arm. It is tender to touch where this pain is and worse when my arm is extended. Also to note there is a linear indent along my upper inner arm when I extend it. So I work in an ER and showed it to my coworker and one of our docs and the nurse had me bring my other arm up. She immediately says that it’s swollen 😳. Someone suggested it could be cording, and I looked that up and it seems to fit but the swelling is freaking me out.

So I have a sleeve and gauntlet that I was fitted for that I was told to wear when flying and when lifting weights. The nurse and doc said I should put the sleeve on. Is this the right advice? Also can I wear just the sleeve??? I thought I heard that was a no no but I work 12 hour shifts Saturday and Sunday and we are swimming in covid and I can’t imagine how I could get good hand washing while wearing a gauntlet! My anxiety is killing me over this and I would appreciate and direction you could give me

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2021 11:33PM kathabus wrote:

I wear a sleeve and gauntlet daily…..but I have to say…..I don’t wear the gauntlet on some days because it just doesn’t make sense. I think it’s fine to wear the sleeve without the gauntlet on the days you work. And I agree that a sleeve is a good idea. Obviously if you see swelling in your hand….:adjust. It’s probably a good idea to meet with a lymphedema specialist at some point if you are experiencing swelling.

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Sep 3, 2021 11:44PM Binney4 wrote:

Dani, I'm sorry you're dealing with this. It does sound like cording. Here's more information about it (it's actually called axillary web syndrome):

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

For both cording and lymphedema, the medical professional you need to see is a well-trained lymphedema therapist. S/he will be able to both evaluate your situation and treat it. In case you are dealing with lymphedema you'll be catching it quickly, which will give you your best opportunity to get on top of it, though if you get the cording under control that may be enough to reduce the swelling you're seeing.

As for wearing a gauntlet, if your swelling is above your elbow, you should be fine for now with no hand compression. But for sure you will want to get help with this soon. Any member of your medical team can give you the referral you need.

Please do keep us posted and let us know what you discover.

Gentle hugs,
Binney

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Sep 4, 2021 06:43AM Rah2464 wrote:

Agree with what Binney says. Definitely get to your lymphedema therapist as quickly as possible. I change up what I wear depending on how my arm is doing. Sometimes its just a gauntlet sometimes just a sleeve. For me just a little bit of swelling is painful so that sensation helps to guide me. Since most of your swelling is up higher at the minimum a sleeve should be very helpful. I would also do manual massage (there are some great videos on youtube) if the sleeve isn't helping enough.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 8, 2021 12:03AM PetunaPZ2017 wrote:

Hi Dani444 -

I hope the forum here is bringing you some comfort from the anxiety. Definitely wear the sleeve when you are working, exercising or doing chores - that was the advice I was given. If your hand is not swelling a lot you should be able to wear it after work for when you are resting, such as watching TV or reading. (Don't sleep in the compression wear, it will not help you.) If you get massages you want to be mindful that the massage starts from the extremities towards the core of your body. Another big help, do deep breathing exercises like you find in yoga. If your physical ability allows it you may want to do gentle exercises that raise your arms to allow drainage. Emphasis on being gentle to your body!!! When I was searching the internet about lymphedema I learned medical schools in the United States devote about thirty minutes to lymph nodes. With so little instruction on lymph nodes it is on the patient to deal with this. If your oncologist does not recommend physical therapy for your lymphedema then make some changes to get better care for yourself. My oncologist really helped me by prescribing physical therapy and the therapist got me into the right compression sleeve. Best of all, I learned how to do Manual Lymphatic Drainage massage that is a gentle (yep, there's that word again). The massage is light on the body and still is a bit of a workout. Please stay well and thank you for the work you do at the hospital.

Dx 11/9/2017, IDC: Tubular, Right, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2-
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Sep 8, 2021 10:51AM Moderators wrote:

Petuna - Welcome to our Community, and thank you for sharing your experience with lymphedema. We're glad you found us, and appreciate your participation. Please let us know if we can help in any way.

Best,

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 8, 2021 01:55PM Dani444 wrote:

Thank you all for your advice! I messaged my nurse at my breast surgeons office. I already had an appointment for the 17th so her advice was to follow what instructions the PT gave me when I got my sleeve. I understand they cannot advise until they evaluate me so it has helped to get this advice you have provided! Thank you for taking the time to respond I appreciate it so much.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 17, 2021 06:38PM Dani444 wrote:

Hello, I hope everyone is doing well. I just wanted to share what my BS said at my appointment. She said it definitely looks like cording, and she does not think I have lymphedema. She felt in my underarm where the tightness and pain starts and she said it feels like there is a thickened area where I am tender. She also did an ultrasound but admitted she isn’t great at identifying abnormalities of the axillary. She has ordered an axillary ultrasound and she said if that doesn’t yield an answer she wants to do a breast MRI. She said she is surprised I have cording this late and sometimes it can be caused by a swollen lymph node that is blocking lymph drainage. She wants to make sure that I don’t have a recurrence in my nodes. When we get answers from the imaging and all is well 🤞 she said she will refer me for PT. Also she thinks the knot in the bend of my arm is a node. This crap just never ends it seems.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 17, 2021 09:24PM MinusTwo wrote:

Dani - sorry you don't have a resolution. But in my understanding, that's exactly what lymphadema is..

...a swollen lymph node that is blocking lymph drainage, or the inability of the lymph to drain because there is a blockage in the lymph system. And yes, lymphadema can occur 20-50 years out.

My BS was of little use. Glad yours is doing more tests to make sure there are no compromised nodes. I do hope she will also recommend a trained LEPT for an evaluation training.

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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Sep 18, 2021 10:26AM LivinLife wrote:

Hi Dani! I don't frequent this forum b/c I'm not technically diagnosed with lymphedema though every now and then I check in when a new thread catches my attention. I had cording develop a few months after my surgery. I didn't recognize what it was except for what I learned about on this site. I only had one node removed. I think it was MinusTwo's link and several people's suggestions I went to a L.T. who helped tremendously with the cording. At that time and since I have continued having what I assume is lymph node swelling in my elbow. The L.T. felt it during that time though still didn't believe I had lymphedema. The elbow still swells regularly though has not every worsened (not greatly though you can feel it, sometimes see a slight difference compared to my other elbow, it gets a little achy sometimes and feels gross when I press down lightly).

I agree with the fact that taking out even one node can lead to blockage of lymph flow and then technically is lymphedema. I've had that line of thinking about my situation though have left it b/c it's stayed the same. If it changed I'd go back to the L.T. for treatment even if she doesn't believe it's lymphedema. There are very few in my area and she is the only one paneled with my insurance - she did a very good job even if we might disagree on diagnosis or not. I've kind of come to think about it like the difference between manageable asthma on a continuum with severe emphysema at the other end with much in between.... As long as I'm aware of the issue, precautions and (potential) treatments that's most important on some level.... If mine were worse I wouldn't agree with that statement... Glad you're following up!! Best!!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 18, 2021 12:48PM - edited Sep 18, 2021 01:20PM by Dani444

So will it be a lymphedema therapist that will help with the cording? After I get the all clear from imaging I don't think my BS would have a problem with referring me to an LT. She did say that she defines lymphedema with swelling from the fingers up. Is it possible to just have it in the upper arm? I agree with you guys and definitely don't want to miss a diagnosis of lymphedema especially early on. Hopefully I will get my appointment soon for the US and get things moving. I appreciate all of the information and input, it is a huge help.

Edited to add: she did visually compare my arms and said she saw a very slight difference in my wrists but it was probably because it is my dominant hand. I do remember when I was measured after radiation the LT said I had a 5cm difference but also said she expected that as it was my dominant side.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 18, 2021 09:08PM MinusTwo wrote:

Dani - I have breast & truncal lymphadema. None really to speak of in my fingers,hands,arms. Breast & Truncal is understandably harder to measure. My goal is to keep it there and not let progress to my arms/hands - so I did learn manual lymph drainage, I wear sleeves & gauntlets when I fly. I know I should wear them for repetitive work, but often pass. I don't allow any pricks or sticks in my arms - and yes it's difficult to find someone who will draw blood from my ankle or give shots in my thigh or hip. I only allow manual blood pressure reading - and only on the less affected side. For me, the extra measures make sense - but we're all different.

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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Sep 19, 2021 08:55AM LivinLife wrote:

You might find a P.T. who has experience with cording though I'd go with an L.T. if possible. If you go with a P.T. - call around to make sure they have a decent amount of experience with cording. My treatment involved something more similar to lymphedema massage and pressing on/squeezing along the cords to break them up and get fluid moving... You don't want just anyone doing this...

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 19, 2021 01:38PM - edited Sep 19, 2021 01:39PM by viewfinder

Hi Dani444,

When I read your first post in this discussion, I took a double-take. It could have been written by me. I've been experiencing the same thing in my left arm to elbow for a few weeks.

I saw my oncologist last week and she didn't seem concerned. She said it was a swollen tendon. She didn't mentioned cording, which I never heard of before.

It is now hardly swollen or giving me much pain. I didn't do a thing, or use anything like a sleeve.

I know that each of our needs should be addressed appropriately on the advice of our doctor or other cancer specialist so listen to what they say.

After I asked the doctor to take a look, she said the swelling in my feet and ankles is lymphedema. Although she briefly mentioned elevating my legs, compression socks and massage she didn't specifically recommend anything. I assume because she considers these mild. I do elevate my feet above my heart for an hour or two a day (based on the advice of my sister who has Severe lymphedema).

These are the first negative conditions I've had since my surgery.

I was diagnosed with breast cancer on on April 2018 and had a lumpectomy June 11, 2018, followed by about three weeks of radiation. I'm taking Arimidex (anastrozole).

...now on to reading more about lymphedema and cording.

I wish you well Dani444!

"You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)
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Sep 23, 2021 03:43PM Dani444 wrote:

Just back from my axillary US. The tech came in after talking to the radiologist to tell me they didn’t see anything on the US. I was relieved to hear that, and I guess next step is the MRI. Just want to get this imaging over with so I can reduce this anxiety. I really hate this generalized anxiety that I have since having cancer and when stuff like this comes up it just amps it up. Oh to go back to my pre cancer self!

I am having better range of motion, as I have been doing gentle stretches as I can tolerate it. Hoping to get into PT soon so I can put this behind me. Thank you everyone for listening

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2021 03:50PM LivinLife wrote:

So glad the US came back ok Dani! Hoping the same for the MRI! Hoping you can get into P.T. soon too.... All of this will help in different ways....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 23, 2021 07:35PM - edited Sep 23, 2021 07:42PM by Aklynna

Hello!

I don't have any experience with lymphedema, but have been dealing with AWS/cording for the past 3 weeks. For me, it's worst right around my elbow and primarily when I straighten my arm out then raise it up. It feels like there is a rubber band that is too short stretching from my armpit to my wrist. I also have a few linear indents in my upper arm which my PT says is from the cording.
I have been seeing a fantastic PT who is specifically trained on working with patients that are going thru breast cancer treatments. The name of the program is ReVital Cancer Rehab thru Select Physical Therapy. My paperwork says they have over 1600 centers throughout the US. Not sure where you are located, but maybe there is one close by.

Kristy Dx 7/15/2021, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 8/25/2021 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 23, 2021 10:23PM Cancersux2021 wrote:

aklynna

I had same surgery mine was on 8/20/21. I still have pain lifting my arm and pain shooting and stabbing all the way to the collar bone and sternum and takes my breath away every time. So would that be cording? Or just nerve damage and takes time to heal? My IDC left 1.3cm grade 1 stage 1 er+ pr + 0/3 nodes Clean margins

If I can ask what are you going to be doing for treatment after your lumpectomy? Don’t have my mammaprint yet went to medical oncologist today for first visit. She’s not sure what to do for me til my mammaprint comes back she doesn’t like that I have so many allergies to so many medications so she is concerned.

Thank you hope you get relief soon!

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Oct 10, 2021 12:16PM Dani444 wrote:

MRI was clear, I am so relieved. I have an initial visit for lymphedema therapist scheduled and will be glad to get that started. I have been doing gentle stretches that have given me a bit more range of motion with less pain. The only odd thing is now I am getting weird tingling feeling in my middle and ring finger that seems to come from my armpit. Hopefully I didn’t do something wrong with my stretches.

Aklynna- thank you for that information, unfortunately there is not one near me. How is your therapy going? Have you noticed a difference

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 26, 2021 09:00AM PetunaPZ2017 wrote:

Cancersux2021 - First off, I like the user name you chose, very appropriate. Second, how are you doing since your post? I did not have shooting pain or stabbing pain when moving my arm around; I hope this has stopped for you. Lymphedema left untreated can cause nerve pain from what I understand. When I feel discomfort I do deep breathing to get the lymph nodes deeper in my body going and then move my trunk around (think hula dancing) and my arm with plenty of lifting at shoulder and above.

I know there are medications too, but I am trying to avoid taking one more pain in the "#&*(@#!" pill.

Dx 11/9/2017, IDC: Tubular, Right, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2-
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Oct 26, 2021 09:09AM PetunaPZ2017 wrote:

Hi Dani444,

Lymphedema seems to be a tough condition for the medical profession to diagnose with confidence. Ultrasound and MRI seem to me to be better at seeing a condition like this only if it is more advanced - maybe?

My oncologist is really good at recognizing that this is outside of what she does for patients and referred me to lymphedema massage therapy. This therapy really helps me physically and even more important keeps me sane.

Looking forward to hearing how your journey through this is progressing.

Dx 11/9/2017, IDC: Tubular, Right, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2-
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Oct 28, 2021 02:21PM Dani444 wrote:

Petuna, I had my first appointment with PT. They are in agreement with the doctor that it does not seem to be lymphedema and it is just the cording. The breast surgeon did the imaging because she thought she felt some lymph nodes on exam and she was also concerned that I developed cording this late. It is all just a roller coaster but I am so thankful for negative imaging and the help I am getting from PT. The therapist did say she would need to do massage on the area with cording but not sure what all this will entail. They are so backed up on appointments I am just doing my assigned exercises until my next appointment on the 10th!

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Surgery 8/19/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/18/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 28, 2021 02:51PM SerenitySTAT wrote:

My cording went away after regular stretching. It's the one where you grip the doorway and pull away. Adjust the angle and height a few times and pull away.

"Do not overlook the little joys!" (Hesse, 1905) 💉💉🐶☕️🛀🖼🥐🌲🎭 Dx 11/2015 IDC L IIIC 10/11 nodes ++-, 12/2015 L Mast, 2/2016 4 AC+12 Taxol fasted, 9/2016 Rads Nodes Chest wall 15+4 boosts, 10/2016 Tamox, 4/2019 Exemestane, 12/2019 Ibrance/Xgeva

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