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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
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Jul 29, 2018 05:11PM JO-5 wrote:

Ohio,

I can't have the myofascial massage because of the lat flap....but later perhaps I would appreciate the name of the other one. It will depend on if she is on my insurance. My dr says there is a new therapist I can go to so I will probably try her first. Thank you so much and I will keep it in mind.

tsoebbin,

Thank you too. The pain from the exercises has gotten better. I am hesitant to try it again, because the pain was fierce.

I am having digestive issues now...most likely from so many antibiotics and for so long, plus nausea and headache.

I have had these issues from antibiotics before and simetimes they can last for months.

Eating light and taking my probiotics....and trying not to stress.

Yes Binney .... I knew to back off from the Lebeds. It was all the arm circles and stretching. I have no clue if just doing it while keeping that arm still would help....I doubt it.

Thanks everyone....hope and pray you are all having a good day.

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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Jul 31, 2018 04:28PM - edited Jul 31, 2018 04:50PM by hugz4u

Jo been following your story off and on. Dang le anyway. Glad you have turned a corner even if a little one.

Edited to correct:Best probiotic I found was VSL#3. 450 billion bacteria per sachet! Wow!I think Costco has it behind counter in capsule form. Not cheap that's for sure. I ordered online. So strong my Gastro doc said take 1/6 of package and increase to tolerance.

Some of my friends take their probiotics after they are all done antibiotics to ensure they will be effective and the website of VSL says to do this. I use to take probiotics 2 hours before or after antibiotics but just went into VSL website and will be revamping my administration of probiotics.

Edited. Oh no JO I just read you July 28post on lebeds. I thought you were doing a bit better? Must sit with coffee and read your last few posts. I've been vaca and need to catch up.Ugh dang le

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Aug 1, 2018 07:24AM - edited Aug 1, 2018 07:36AM by JO-5

hugz4u,

Right now I am just in a waiting mode. Nothing new to report.

My arm STILL dark pink, still has some swelling. I am thinking if it is cancer it would be worse by now. It has been 2 + months since the bug bite.

I'm thinking Binney may be right that this may be like some with breast inflammation and may take a long time for the red to go away.....if ever. Some on here may remember that before I had the mastectomy I used to post that my breast was Technicolored from LE and multiple biopsies. It never did clear up. (That had nothing to do with the angio)

Trying to take comfort that it is unlikely that a fly bite could cause cancer. But then only 1/2 of 1% of people having radiation treatment get secondary angiosarcoma. If there is one rare side effect of anything I seem to be the one that gets it.

I went back to doing massage, but staying AWAY from the red area. Doing some movement with the arm that does not stretch the under arm "loaf" and scars from the lat flap. I just feel like I should DO SOMETHING!

As for the probiotic. The Floragen Digestive ( formerly Floragen3) is the only one I can tolerate. I took it 2 hours before or 2 hours after the antibiotic. I take one every day about 30 minutes before a meal, and have been doing that for a year. It has helped my IBS more than anything else I've tried. My pharmacist, knowing some of my problems recommended it, and the method of taking it. It can be taken with food but does not work as well. It is coated and formulated to get into the intestinal track without being destroyed by stomach acids. I'm glad the VSL works for you but I would be afraid to take one that strong. Thanks for the input. We are all so different .... yet so similar.

Reading with interest the 30/30 and 5/2 exercise thread. I guess I'll have to pass. I am more like 10 minutes twice a day every other day.....and the house work/ laundry etc. has to count for the rest. I was just getting to where I could do more from the lat flap.....when a deer fly decided to chew on me. Grrrrrrrrrrrrrrrr!

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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Aug 1, 2018 09:33PM hugz4u wrote:

Awe Jo and it’s summer to. Seems like my summer always gets screwed up to.

This June a scratched cornea from a eyelash that grew into eye. Still medicating it as it turned into an ulcer. At eye doc office right now getting it looked at, no bellinis here just office full of staring eyeballs!

Yup that eyelash was from chemo eaons ago which caused some of my lashes to grow towards eye. Still bugs me once in a while. Going sept to get lash cauterized off.

I wonder if the tai chi exercise breather would do you harm. I’ll bump it and you can read about it. It’s the one they used in a study and it moved le fluid.

I’ll look up floragen. Thx.

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Aug 2, 2018 07:17AM JO-5 wrote:

hugz

I certainly will take a look at the tai chi breathing exercises if you bump them up.

I do the Lebeds breathing all the time several times a day and it helps. I can't see how breathing of any kind could hurt.

Ouch! On your eye. I can't stand if anything gets in my eye. I can't even imagine an ingrown lash. I have chronic dry eye, caused by Arimidex that requires prescription drops. My opthamologist says it was the Arimidex, and when I stopped taking it (finished 5 years) the eyes stopped getting worse but won't get better- even with the drops. Just one more thing.

I will watch for the breathing exercises.

Thank you!

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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Aug 2, 2018 01:58PM hugz4u wrote:

Jo bumped it up. Yup dry eyes suck. Have had for 30 years. No fun but would gladly have instead of dang le

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Aug 2, 2018 02:46PM JO-5 wrote:

i guess I'm dense ..... where is it?

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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Aug 2, 2018 03:25PM - edited Aug 2, 2018 03:33PM by hugz4u

Jo itson the “easy tai chi breather exercise to move lymph fluid out thread." It's there. Posted yesterday. Let me know if you can't find and I'll bump again. It's right under grrr thread.

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Aug 2, 2018 05:36PM - edited Aug 2, 2018 05:38PM by JO-5

Ok got it.

I don't think I can do it. I have a split skin graft in the center of my chest that is very thin and delicate. I cannot do the Lebeds ones where she says "Open that chest up shoulders back."

That graft cannot be stretched. I also can never go in a pool again because the chlorine will break the graft down. Yep, I'm just a mess.

I will modify it a bit and see if it helps.

Thanks, I appreciate any thing that anyone offers that might help.

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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Aug 3, 2018 06:28PM hugz4u wrote:

JO dang anyway. If you can belly breath and bend over forward while breathing out I think this expells air better maybe puts pressure on diaphragm. This is in theory, I’m not sure but I do this. Maybe we will have professional breathers drop in and tell us.

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Aug 3, 2018 07:53PM JO-5 wrote:

hugz,

You are right. I do that many times a day. I read somewhere that most people don't breathe deep enough. The largest lymph drain is down the center of our chest. I practice deep breathing when I am just sitting watching TV. I breathe in slowly to a count of 10. Hold to a count of 10. Breathe out slowly to a count of 10. It doesn't help my arm much but helps me feel better.

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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Aug 3, 2018 09:35PM MinusTwo wrote:

One of the exercises we do in water aerobics is hold a medium play ball to our rib cage. Breath out and contract the abs to bend forward. Obviously ball moves down the core. Straighten & breathe in. It's a lovely cleansing feeling. Could easily be done anywhere.

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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Aug 4, 2018 02:34PM JO-5 wrote:

Minus,

I used to do something similar when I went to the therapy pool. I think I told you I cannot get in a pool anymore because dr said the chlorine would break down the graft.

I have 6 sessions paid for that I never used....and they don't refund. Oh well.

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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Aug 4, 2018 03:28PM MinusTwo wrote:

Jo - Yes, I remember about the skin graft. I know you'll miss the pool. I find the exercises much easier in the water. Hopefully you can find a friend to use your sessions.

How is your arm doing? I can't remember - don't you have an MRI scheduled next? What is that date?

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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Aug 4, 2018 03:45PM JO-5 wrote:

MRI is next Saturday the 11th at 10:30 AM. The arm is better than at first .... but still reddish, still swollen but not as bad.

Every time I've had cellulitis the LE has gotten worse. Evidently this is NOT CELLULITIS. It has never been warm to the touch, never had a fever..... It has improved but oh soooooo slow! My BS always tells me, "If it gets better it is not cancer." so I am holding on to that thought, even with it being this slow. Slow is better than worse, and it is definitely not worse.

Thank you all for your concern and suggestions.

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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Aug 5, 2018 08:23AM Vargadoll wrote:

Joanne - still think of you daily!

I have a sore spot below my LE boob. It's right were my bra band would be. It doesn't hurt I just know it's there. Should I be concerned? I think I feel a lump or something. I don't trust my evaluations anymore...I always assume the worst case scenario now!

"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 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 5, 2018 02:28PM JO-5 wrote:

Vargadoll,

They, (not sure who "they" are) say give it 2 weeks and then have it checked by your dr. 2 weeks is never long enough for me as everything takes longer to get better on me (example this arm)

You can have any number of things that have nothing to do with cancer.

I would say first of all if you are wearing an underwire bra STOP NOW! Don't wear any bra too tight. It doesn't do a lot for the figure but I put extenders on all my bras because sometimes the LE is worse than other times and nothing is worse than a bra that is too tight.

Is it hard as a marble, squishy, or firm like a grape, is it getting bigger? So many things to consider.

You say it is sore but doesn't hurt? Sounds like a bra issue.

Go without a bra and see if it gets better. Also, sometimes it is actually just a rib.

When all is said and done ..... get it checked out.

Now all that didn't help a bit did it? LE can cause so many different things.....hard to tell. Chances are good that it is nothing.....probably like I read on another thread.....just the cancer of the week. That's where our mind goes with every little thing.

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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Aug 5, 2018 08:59PM Vargadoll wrote:

thanks Joanne! My husband said he felt like it was from the band on my bra. I haven't worn an underwire since the day of surgery. I had my new bra on the one that I love the lymph o fit one the day before I noticed the sore spot. I see my PT on the 15th. I go for a colonoscopy on Tuesday. I want the colonoscopy done and over! I've had two before so I know what to expect.

"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 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 6, 2018 05:25AM JO-5 wrote:

Vargadoll,

I'm glad you are seeing the PT. Maybe she can set your mind at ease ....if she is a good one. New bra...new sore spot...sounds related.

Hope all reports with the colonoscopy are good, and the prep as easy as possible.

Praying for both issues !

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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Aug 6, 2018 06:42AM Vargadoll wrote:

Thanks Joanne! Colon cancer runs in the family and that was my concern not BC! The family members that had colon cancer were not exactly health conscious people. I have never smoked, drank or been a junk-food eater. My brother survived stage 4 colon cancer. He was party person. That was 10+ years ago.

I pray your arm is giving you a break today!


"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 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 6, 2018 07:40AM JO-5 wrote:

Vargadoll,

Family history of colon cancer does not always mean you will get it.

My husband's Father, Mother, and sister all passed with colon cancer.

My husband's brother has had polyps.

My husband (nor I) have ever smoked or drank, and we eat well, and my husband has never even had a polyp. I have no family history of colon cancer....had a polyp once but they said it would never have been cancer.

Arm still the same......no better in last few weeks.....but no worse.

I keep watching these boards to see if anyone has had lymphedema in the arm that presented red and swollen (from a bug bite) that took a very long time to resolve. I guess I am breaking new ground in this .....as well as some other things in the past.

Blessings and peace!

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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Aug 6, 2018 05:27PM Binney4 wrote:

Joanne, you're on my mind every day. Looking forward with you to the relief of hearing good results from next Saturday's scan. it's so frustrating to have so many issues cancelling out all the things you would like to do. Your patience is certainly getting a workout as you wait this one out! And yes, looks like you're breaking new ground here (again!), so we're grateful for your willingness to share your experience with us. At least we can all say we've learned one lesson already: stay away from those deer flies!

Hugs, prayers,
Binney

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Aug 6, 2018 05:39PM - edited Aug 6, 2018 05:40PM by JO-5

.........besides staying away from deer flies or any kind of bug........

DO NOT GET LAZY WITH YOUR MASSAGE AN/OR LEBEDS. !!!!!

I can't help but think if I would have been more vigilant, this may not have gotten so bad.

I knew my arm seemed to be a bit bigger and vowed to get busy on it.

God willing this is not cancer you can bet this gal will not be lazy again with exercises and massage.

Lesson learned. You ladies please take heed. I hope none of you ever have to go through this.

Thank you Binney,

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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Aug 8, 2018 07:28PM hugz4u wrote:

Thx Jo I’m so lazy about massage cause I think I do it wrong so give up. But I do lebeds opener two to three times a week and tai chi breathers. But I need to do more. Don’t we all need to????Le sucks.

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Aug 9, 2018 06:47AM Vargadoll wrote:

Hugz - I feel the same way! It was so good for me to read that you think you suck at MLD! My LE is on my right side and that's my dominant hand. I'm just a klutz with my left hand. I'm getting better about using my left hand for more things like carrying in groceries, petting a animal (I'm terrified of getting scratch or bite on the LE side!) Reaching into anything! My brain is trying to reprogram.

Now, on to my new question. That sore spot under my LE boob. Last night after my Flexitouch time it was really sore. I rubbed it and it was bigger. The spot was more of a blob and then it extended down my belly for like 3-4 inches. I went outside and showed my DH. I said this is starting to feel like cording. When I raise my shirt (and boob) to stretched the skin and to tell him to feel. He said I don't have to I see it. I couldn't see over my boob so he said go look in the bathroom mirror you will see it. When I stretched the skin out so I could see the cord I popped it. It was one of the worst cords I have ever had. It popped so loud and I actually felt a little burn. I have always heard them pop but never really felt the burn. (Or bruised I haven't look to see if the one bruse yet) so thus morning I told DH I feel like there is at least one more cord. This one was way down my mid section almost to my belly button. I barely stretched the skin and it popped.

So here's my questions, why and I still having cording a year and a half after surgery? What exactly is cording and what is causing it? Is it common to have cording so far down??? I thought it was AWS ( auxiliary Web Syndrome ) so I assumed it stopped there.

Thanks ladies! I see my PT next Wednesday but if you think I should contact her earlier I will.

"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 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 9, 2018 08:38AM - edited Aug 9, 2018 08:41AM by JO-5

Plans changed...Have to go get blood work right now. MRI this afternoon at 3. Lab called my nurse...cannot do it Saturday...and doing with contrast so have to get blood work done.

Did not want contrast....makes me sick.

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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Aug 9, 2018 11:53AM Vargadoll wrote:

Good luck Joanne! I'm saying a little prayer for you now. Sending good vibes!

"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 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 9, 2018 12:03PM hugz4u wrote:

JO. Well for sure I know that any kind of plans can change with LE. It sure keeps us on our toes! Report in once done. We’re in your back pocket.

Varg. Oh I’m so sorry I know zip about cording but I think you can get it this far out. Stepup-speaking.org. willhave info. Also pull up some old threads here in search box

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Aug 9, 2018 12:05PM JO-5 wrote:

Thank you! Appreciate it.

Just read your other post....sounds so painful!!! I've never had that....or did and didn't know what it was. I have a painful pulling in my arm pit ever since the lat flap. (Sometimes feels like it could snap)

God willing this is not cancer...then ..I will call that pulling to the attention of the therapist.

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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Aug 9, 2018 12:27PM hugz4u wrote:

Jo good for you for looking after yourself. A really really gentle arm stretch once your ready might help. I know my pit and lat and tricep area is so tight from rads and surgery. I really could stretch it out every 15 min. It just seizesup so soon. Forward March 1 2 3!

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