We are 213,316 members in 82 forums discussing 152,270 topics.

Help with Abbreviations

Topic: GRRRRRRRRR I HATE LE..........

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

Posted on: Oct 14, 2010 09:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
Log in to post a reply

Page 331 of 332 (9,933 results)

Posts 9901 - 9930 (9,933 total)

Log in to post a reply

Nov 4, 2018 08:20AM Vargadoll wrote:

MinusTwo - I love my new Sydney bra! It came with nipple covers to! I'm wearing it today for the first time. I have on a sweater (it's cold in the mountains thus morning ) so I'm not wearing my swell spot wrap and it's so comfortable even without the wrap!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 4, 2018 10:25AM MinusTwo wrote:

Varga - great news. Of course we're all different but I'm always glad when someone else finds this bra comfortable & useful for breast & truncal LE.

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
Log in to post a reply

Nov 5, 2018 09:24AM JO-5 wrote:

Ladies,

I keep everything documented...for my self and for when the drs and I butt heads 😁.

It took all Summer....but I am happy with the progress. The center pic was during the 39 days of antibiotics. It stayed that way until I got in with the new LE therapist.

My arm is not quite that big....It was laying on the chair arm and squished out a bit.

It is not much bigger than my left arm.

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.
Log in to post a reply

Nov 5, 2018 11:43PM tsoebbin wrote:

Your arm looks so much better! 🌻

I am 54 and Love Travel, My Family and Friends, and Life in General! Dx 4/4/2016, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Dx 5/11/2016, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Surgery 5/11/2016 Lumpectomy: Left Surgery 6/28/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right
Log in to post a reply

Nov 6, 2018 02:39AM Binney4 wrote:

Whew! SO GLAD you found a therapist worth seeing. Bet she's delighted too.

Onward!
Binney

Log in to post a reply

Nov 6, 2018 07:56AM - edited Nov 6, 2018 07:57AM by JO-5

My therapist is not only good at what she does but a compassionate understanding person. That means a lot to me. I don't do well with snarky people that are working on me, let alone the fact that she had no idea what she was doing.

My new therapist told me last week that she has gotten soooo many referrals from my dr just lately and doesn't understand why.

I know why.....😊

My dr's nurse, that has been with him 41 years, and I have been talking a lot. She told me so many women are really dissatisfied with the LE therapist that is in our Network and she is referring them to the therapist I have now. Now all these women are having to pay out of pocket like I am. I just don't understand why that woman is not only still there but the head of the PT Department.

I still haven't worked up to sleeping in the velcro wrap.....little steps.

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.
Log in to post a reply

Nov 6, 2018 10:02PM susan3 wrote:

I wear my Velcro when I am driving, sleeping, or if I am going for a walk, you know walking dog whatever. Cause yes, it's hard to do stuff with it on. But lt does loosen up as the day goes o

Live and love fully Dx 3/2001, IDC, Stage IV, Grade 3, 40/5 nodes, ER+/PR-, HER2-
Log in to post a reply

Nov 7, 2018 09:47AM hugz4u wrote:

Jo. Sending you a happy dance snd chocolate. So glad you didn’t give up.

Log in to post a reply

Nov 8, 2018 12:58PM VLH wrote:

Looking good, Joanne!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 01:03PM VLH wrote:

Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 01:04PM VLH wrote:

Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 01:05PM VLH wrote:

Have any of you who use a lymphedema pump had shingles? if so, how long was it after the rash appeared that you were able to resume use of the pump? Thanks!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 8, 2018 05:05PM JO-5 wrote:

Lyn,

I never have had shingles but I have a pump (not using it anymore). I was told and the literature says ...DO NOT WEAR ON OPEN SORES OR RASH. I would think you should not use your pump until the shingles are completely healed.

Your LE therapist would be the one to ask. Drs know next to nothing about LE.

Sorry you have shingles. My husband had them so I know a little about it. His were terrible!

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.
Log in to post a reply

Nov 8, 2018 11:35PM VLH wrote:

Thanks for the response, Joanne. I wouldn't dream of using the pump now since my neighbors would hear screams and call the police. Loopy

I've read that shingles can last three to six weeks so I was just curious about how long others had to wait to resume pump use. I haven't seen the lymphedema specialist in months. I had my arm measured to order a new sleeve and, luckily, my lymphedema hasn't worsened so I plan to stay the course unless something changes.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 9, 2018 06:45AM - edited Nov 9, 2018 06:46AM by JO-5

Lyn,

Good that your LE is under control, not worse, so you won't have to worry about using the pump. (When my husband had the shingles that area was still tender and sore long after it had healed.)

I wonder about the effect of shingles on the LE. Does it act like any other cut or scratch and cause cellulitis?

My dr would not even give me the shingles shot because of my sensitivity to most meds, and since it is a live virus he was really not for me having it.

Fingers and toes crossed!!!!!

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.
Log in to post a reply

Nov 9, 2018 05:44PM - edited Nov 9, 2018 06:27PM by JO-5

HELP,

Can LE go into the neck?.

First...my arm is not 100 %....may never be but most people looking at the outer side of my arm would never notice.

The therapist released me saying I have all the tools I need ...good working knowledge of massage, sleeves, velcro wrap... and she said no reason to come and pay her to do what I can do.

Then this afternoon I noticed that side of my neck seems swollen.....not bad and not a lump....just bigger on that side. I can feel it better than see it. It feels like LE and not hard. Of course my first thought was cancer....but it doesn't look like a swollen node .....just that side a bit bigger.

By the way she told me that I basically have LE to some degree in the whole upper right quadrant of my body front and back. I do massage in that whole area. My fore arm and right front of the abdomen is the worst.

Any of you have it in your neck or know someone that does?

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.
Log in to post a reply

Nov 9, 2018 06:26PM - edited Nov 9, 2018 06:29PM by JO-5

Me again......

In searching this board for le in the neck.......What do I find but a post in July by ME, asking about swelling in the neck !!!

I must be losing it.....because I don't even remember that. I said it went down with Lebeds....don't remember that either!

Wow, I'm a real mess!

But I still would like to hear from anyone that has/had it in the neck.

I just did the massage and added some to that area of the neck.....bringing it down and into the drain at the clavical.

If it does not go down some by Monday I will call her and see if she will take a look at it and see wbat/how to massage that area.

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.
Log in to post a reply

Nov 9, 2018 06:37PM - edited Nov 10, 2018 09:40PM by VLH

Good grief, Joanne...LE just won't give you a break! I hope the lump responds fully to massage.

I realized that the stupid shingles have extended to my upper arm a bit below the armpit. I guess that explains why my armpit was so tender as the pain often proceeds the rash. That's disconcerting because I've always gotten more of a response (swelling reduction-wise) from my sleeve than from the pump and now neither is an option. Other then the very limited rash area, there's no redness on my arm consistent with cellulitis nor do I have a fever. The newer, more effective shingles vaccination is in short supply, even if you could take it. My doctor said that I will have immunity for about two years, then can have the vaccination. Hopefully, there will be an adequate supply by then.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
Log in to post a reply

Nov 10, 2018 01:34PM - edited Nov 10, 2018 01:34PM by HersheyKiss

Joanne, I asked my therapist about lymphedema migrating to the neck and she replied, "Yes, it can happen. I've ever seen it in people's faces." Oh great. That is not what I wanted to hear.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 10, 2018 01:51PM Vargadoll wrote:

Yep. ..LE can affect the neck. I have had swelling there before. My PT even said it can cause brain fog...well, that explains alot!! So sorry you are experiencing this Joanne!

Ladies, I'm have the abdominal cording AGAIN!! It has been happening for the past 4 months. I can pop most of them but every now and then I get one that needs to be dry needled to pop. The cords only annoy me at night. When I roll over I feel like I rolled over a pencil. Of course I looked up abdominal cording and there were a few articles. Which surprised me! Anyway, one was about Mondor's Disease. It pretty much summed me up! Has anyone heard of this condition? I see my PT Tuesday I can't wait to get this one big cord popped!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 10, 2018 02:55PM JO-5 wrote:

Hershey and Vargadoll,

Thank you so much. I do appreciate you responding, but can't believe in this world of Technology and and so much knowledge.....that we have to figure this out for ourselves!

I knew that some of you would know.

Wow, brain fog! I have certainly had that for the past few days and could not figure out what was going on. The neck swelling went down after massaging the neck and doing the rest of it, and I don't feel as woozy!

My ears felt plugged as well.....and that went away with the massage.

I found a video on You Tube for the neck and it was similar to the rest of my massage.

Maybe this is overdoing it but today I did the massage on the "good" side as well. The way my body works, (or doesn't work) I will probably be one of those that get LE on the good side.

I wish I had an answer for you Vargadoll but I never heard of Mondor's disease. Let us know what your therapist says. I also have never had cording ..... at least not that I know of. My right side gets so sore and hurts and I cannot lay on that side. It just feels swollen ... not like a cord. I massage it and it helps.

Lyn.

Hope the shingles start getting better and soon.

Thanks again Ladies..... What a time for my therapist to release me. I might try to call and talk to her Monday. I don't know if I would have to get another referral to go back.

If my neck continues to improve with massage I will know and probably not need her.

Grrrrrrrrrrrrrrrrrr......I guess we will all just keep trudging through this doing the best we can and being thankful it is not cancer!

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.
Log in to post a reply

Nov 10, 2018 03:02PM - edited Nov 10, 2018 03:05PM by JO-5

I wanted to also tell you something else my therapist told me.

Maybe you remember that my PCP thought that this might be cancer in my arm.... And I had the MRI and ultrasound which were both good.

On my last day she and I we're discussing this. She told me that cancer from lymphedema usually only occurs in someone that is hugely and grossly swollen over a very long period of time. She says it's never in the forearm. She said it can rarely occur and it is almost always in the upper arm. It can come on quickly but it would be one of the most horrible unrelenting pains you ever had.

That set my mind at ease because every once in awhile when my forearm gets a little red I would wonder. She says the redness (actually just pink now) is common and may come and go for a while.

Just another tidbit of information I thought I would share.

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.
Log in to post a reply

Nov 10, 2018 11:21PM - edited Nov 10, 2018 11:22PM by Binney4

Joanne, here's a LE massage for head, face and neck:

https://ahc.aurorahealthcare.org/fywb/x23169.pdf

I've used it several times in the past just because things felt "congested." It's effective, and I've found it wonderfully calming, too. I use it on our son who has autism when he's upset and he never fails to respond to it, so for that alone I'm thankful for everything I've had to learn about LE.

Varga, Mondor's is the name of the "cording" that occurs below the breast and into the abdomen, and it's theorized that it has a different origin than the axillary web syndrome (AWS) we commonly call cording. For AWS it isn't recommended that the cords be intentionally "popped," because some studies have shown AWS to consist of thrombosed lymph vessels, and they may be damaged by popping. (Gentle manipulation and stretching, preferably by an experienced therapist, is preferred). Since Mondor's is a different beast popping may well be the treatment of choice.

Hugs all around!
Binney


Log in to post a reply

Nov 11, 2018 08:27AM lovepugs77 wrote:

Jo, I get some swelling in my neck. I didn't realize it until my therapist commented on how much better it was looking after several sessions. When I stay on top of things (exercises, compression gear, Flexitouch pump, etc.) the neck swelling pretty much disappears.

DX at age 39 Dx 2/17/2017, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- Dx 2/17/2017, IDC, Left, 2cm, Stage IIIA, Grade 2, 4/24 nodes, ER+/PR+, HER2- Surgery 3/28/2017 Lumpectomy: Left, Right; Lymph node removal: Sentinel Surgery 4/13/2017 Lymph node removal: Left Chemotherapy 5/18/2017 AC + T (Taxol) Radiation Therapy 9/27/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 11/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 11, 2018 09:04AM Vargadoll wrote:

Thanks Binney! My PT would pop the cords in my arm but my OT said No! The last big one in my abdomen is not as bad as it was. It did not wake up me last night. I have been stretching the fire out of it! Maybe that helped! I just wish it would STOP IT NOW!! Is this a "rest of my life " thing to???

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 11, 2018 02:40PM - edited Nov 11, 2018 02:49PM by JO-5

Binney,

I looked at that site and did the head and neck massage before I did my regular. I think it helped. I'm going to print it out because I can't remember the sequence.

Thanks for posting it. I have a great grand daughter that has not been diagnosed with autism .... but has some symptoms. I am going to talk to her mother, my granddaughter, and teach her this head and neck massage.

Thank you lovepugs77....Sorry you have LE at all, but glad to know someone else knows neck swelling can happen. Thank you for taking the time to tell me.

Varga,

That cording sounds awful! Sorry you have it. I suppose it is something you will have to contend with from now on. Does cording ever resolve or just get better for a while like LE....then flare again?

I'm not at all happy knowing I will have to do even more massage now with it in my neck.....and wondering if that is what makes that ear feel so stuffy. Thinking it is...since the ear got a bit better after the massage.

I have a question for all of you. I watched a You Tube video of neck massage for lymphedema. This woman said many people including herself CAN FEEL THE LYMPH FLUID "TRICKLING DOWN". Any of you ever experience anything like that? I never have .....If some of you have felt that I will believe it, but until then I think it is nuts. Her name is Rochelle Clark.

I feel better many times after the massage but I don't feel anything trickling.


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.
Log in to post a reply

Nov 11, 2018 04:52PM Rae7200 wrote:

I had an alternate PT for 2 of my last sessions, and she was great. When she took the measurements at the beginning of the session, she said there was almost no difference in the total -- some had gone up a little, some down a little (the good news is that the upper arm had gone down a little). So she decided to put me on the pump for 45 minutes. At the end of that, every measure on my arm was down. On that basis, she started the process to order me a custom sleeve and glove. My insurance will apparently cover 6 of each for every calendar year. The glove is for flying, since I don't have lymphedema in my hand. I'm guessing that later she will have me order a gauntlet to go with the next sleeve? Right now I'm wearing just a light compression sleeve they gave me. The bandaging they gave me (Round 1) really irritated my skin, so we tried it again with a different inner liner and some different material. It still irritated my skin, though slightly less. Hope to meet with the company rep about the custom sleeve before too long...maybe the end of this coming week. My PT also set me up for a pump. She really likes one of the new pumps that came out that has more "capillaries" -- the problem is that it comes down below the hips, whereas the regular one (black box) stops at the waist. I told her I thought the new one would just be way too much for me, especially with my bad back and arthritis hips.

Putting on the light compression sleeve is not that hard until you get to the top and do it without a mirror. Punched myself in the face lightly yesterday, even though I read about not looking at it here. Did it again today only slightly harder. Yeesh. I really need to get a mirror. Or get something to stay inside of my Swiss cheese brain. This is when I miss my estrogen the most!

My adventure earlier in the week was showering with my DH who likes much hotter water that I do, and when he closed the door to the bathroom and turned on the overhead heating element, my L hand started swelling up and I lost definition in my knuckles. I was terrified I'd given myself lymphedema! PT suggested we leave the bathroom door open. We remodeled the bathroom about 10 years ago, replacing the tub with a tiled shower with two double shower heads, one at each end, and a fold-up bench in the center. At first, we had only one control. When I knew I was going to have radiation again, we had our guy come back and reconfigure the plumbing so that each of us has our own shower temperature and volume control. Lifesaver! Still, we may have to rethink our comfort lever for whose side is whose, since when I sit on the bench (and I'm the one who uses it), my left arm is closer to his hotter water, and if I decide to get friendly, I right in the stream of hot water with my LE arm.

My "Now that it's cold, I remember I have Raynaud's in my fingers" time has arrived. I used to use heat packs in my gloves. Guess that's out for my left hand. I just ordered a men's large glove (and an extra large) to see if I can get something over the extra bandaging. I can't afford to go without because of the Raynaud's. What a cruel trick this all is. Bah humbug. Still, any day that I'm not told I have breast cancer is a good day!

I say my oncologist on Thursday. All is well. I told him I was embarking on a mission to change his practice so he referred his patients right away when they showed signs of LE, or even when they thought something wasn't right. He had been only referring cases of moderate to severe LE in the breast or arm, and deferring to Radiology, since they had so much more experience. (I had previously sent him a short, but diplomatic email on the subject about early detection.) Much to my surprise, he said, "I'm there." I gave him the handouts given me by my PT (about 3 pages worth, designed for patients as well as any medical personnel not familial with LE - and even those who are.) I felt really, really good about that. I think I may have made a difference in some women's lives in the future.

Ravel

Dx 10/24/2014, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 12/18/2014 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/11/2015 Whole-breast: Breast Hormonal Therapy 4/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/3/2017, IDC, Left, 1cm, Stage IA, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 12/15/2017 Lymph node removal: Left Radiation Therapy 2/19/2018 External: Lymph nodes Hormonal Therapy 5/18/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 13, 2018 06:55AM kandyhunt wrote:

I may have mentioned that I have been seeing a therapist that told me because my hand is not swollen like at stage 2 and my arm is not at stage 2 I could not have lymphedema. She also told me last week that she really could see no reason for me to come back. She said she doesn't believe in teaching self massaging as I could never do to it as good as her. She said that since using the off the shelf Wear Ease Compression has helped than I don't need to have a sleeve and she is tired of my coming in and wanting massages and she thinks I am wasting her time.

I saw a new person at a different facility yesterday. Took a while to get in for the first appointment. She heard my story about 22 nodes removed, the heaviness, the pain, the not being able to sleep, the crazy things like sleeping with a stack of pillows to hold my arm up, how I raise my arm to keep the pain away. She said that if using the compassion shirt was working I needed to get a sleeve and yes I do have lymphedema because it looks like it. And that not all people have major hand swelling. She asked about getting me a FlexiTouch. And I started to cry. she was saying all the things that I had read about and knew would help but my other therapist was against, "they don't work, cost too much money and you don't have lymphedema."

I am seeing her again today to start the ordering of the equipment I need and to maybe put me on the Flexitouch for the trunk to see how it works on my issues in my chest and side. Oh Happy Day!!!!

By the way she, my new person knows and had worked in the past with my old therapist and said, "yeah she is very old school and very pure."

Log in to post a reply

Nov 13, 2018 09:47PM - edited Nov 13, 2018 09:47PM by JO-5

kandy,

So glad you found a good therapist. I would not call your old therapist "pure".I would call her purely inept and untrained.

She would not teach you the massage because you could not do it as well as she can.....but she won't do it for you. Oh boy!

She sounds as bad as my old one that massaged my arm without clearing and when I asked her about it she asked what I meant.

I hope you start seeing good results soon.

My arm almost looks normal .... abdominal is not so good. I just can't tolerate compression around that area because of the scars.

As Binney is fond of saying Onward and chocolate!

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.
Log in to post a reply

Nov 16, 2018 08:45PM Vargadoll wrote:

My LE arm has a bruise and it hurts! I haven't had a bruise on this arm that I remember anyway since the LE diagnosis. Should I be concerned? My veins are all raised to. Something is just very different.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall

Page 331 of 332 (9,933 results)