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 Lymphedema
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terri67

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Re:Lymphedema - Monday, April 20, 2009 2:23 PM
Thanks B4 and JulieS,
Yes, it does seem to be improving. It isn't as red and the pain is going down also. It does seem like it spread a little in one area, I will keep a close eye on it and go to the dr's right away if I think it is still spreading by tomorrow.

I see my Oncologist this Thursday for my 3 month, looks like I am going to have lots of questions for her.

Thanks again, Terri
age:41
Dx: 9/24/07 IDC
10/17/07:lumpectomy & sentinel node.
10/22/07:re-excision. & 1/18nodes+
Stage: 2a.,ER/PR+,HER2+
11/12/07: port
11/15/07: 1st.chemo.
Taxotere,Carbo.,Herceptin
5/12/08:Radiation finished.
Tamoxifen
B4

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Re:Lymphedema - Monday, April 20, 2009 3:31 PM
Hi, Terri,
So glad you're feeling better -- whew! When there's redness and you're trying to treat a cellulitis infection, it helps to draw around the red area with a permanent marker. That way you can be SURE when you check it whether it has spread or retreated.

When you see your oncologist it would sure be helpful to ask him for a referral to a well-trained lymphedema therapist. If there's lymphedema present s/he can diagnose and treat it, and if not s/he can do baseline arm measurements for future reference, give you personalized risk reduction tips, and fit you for a compression sleeve and glove for exercising, travel, or any strenuous activity. Just make sure any therapist you see is thoroughly trained in lymphedema management. Here's a web page with helps for finding one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hope you're soon seeing this stupid infection in your rearview mirror!
B4
DJW

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Re:Lymphedema - Monday, April 20, 2009 5:01 PM
I'm so glad you called and it was caught so quickly. Hang in there, girlfriend!
Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)
Theresa R

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Re:Lymphedema - Tuesday, April 21, 2009 7:43 PM
Wow - I'm on my way to the Caribbean on Thursday to a tiny island with no medical facilities.  Only 80 people live on this island. I'll be out in the sun for almost two weeks, and the way I see it, there are all kinds of risk factors for lymphedema.

Flying, snorkeling among coral, sunburn, bug bites.........

So, I did the responsible thing and called my oncologist to ask for an antibiotic to take with me just in case.

Well, I just got the message that "Dr. Patel does not feel that you have a risk for lymphedema, and therefore we won't be calling in a prescription"  WHAT????  I couldn't believe my ears!  Yes, I only had a sentinel node biopsy, but I did have 5 nodes removed!

Any suggestions on how to handle this?  I'll probably call the surgeon tomorrow, and if she won't prescribe something, I'll try the plastic surgeon (though it's been quite a while since I've been his patient)

I truly couldn't believe it!

Theresa
Diagnosed 3/24/2006, Tubular carcinoma, stage 1, grade 1, ER/PR pos, HER2 Neg Lumpectomy 4/2006. MRI found another lump. Another Tubular,stage 1. Bilateral mast 5/5/2006. Exchange surgery,ooph August 2006.Arimidex Oncotype-15
Carepage:TheresaRasmussen
Butterfly

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Re:Lymphedema - Tuesday, April 21, 2009 10:12 PM
I can believe it Theresa!!  Sometimes these doctors scare me, at least mine do.  I was never told anything about lymphdema and when I mentioned it to my oncologist he acted like I was crazy or something.  Sometimes I feel like my doctors and it seems your's  are as smart as a "box of rocks" when it comes to all the side effects of cancer, surgery, chemo, and radiation.  I mean what the heck!!  If it wasn't for this site, I would be just like them, knowledable as a box of rocks!!  I hope you get your prescription!!
Take care!!

Roxanne
<message edited by Butterfly on Tuesday, April 21, 2009 10:14 PM>
terri67

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Re:Lymphedema - Wednesday, April 22, 2009 7:01 AM
Hi Theresa,  I would definitely keep trying for the antibiotics,after my last episode I was just thinking How I would never travel without taking antibiotics with me now.
 
Keep trying and Have A great Trip sounds so fun !!!!
                               Terri
age:41
Dx: 9/24/07 IDC
10/17/07:lumpectomy & sentinel node.
10/22/07:re-excision. & 1/18nodes+
Stage: 2a.,ER/PR+,HER2+
11/12/07: port
11/15/07: 1st.chemo.
Taxotere,Carbo.,Herceptin
5/12/08:Radiation finished.
Tamoxifen
.MARIANNE

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Re:Lymphedema - Wednesday, April 22, 2009 4:11 PM

Theresa, I call my regular Dr. when I am going somewhere like Mexico when you might end up with severe diarrhea. The water or the food might be tainted and it is better to have it with you. I'll bet your reg. Dr. will phone one in.





Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo

DJW

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Re:Lymphedema - Tuesday, May 26, 2009 9:36 PM
I wanted to alert Ruthie and the rest of you that BlueSue has posted a new thread about lymphodema on the Persistent Side Effects forum. Hope some of you will go there and will be able to answer her questions.
Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)
Elaine10066

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Re:Lymphedema - Wednesday, May 27, 2009 12:59 AM
Hi Blues Sue
I know this is a late response, but I kept a journal and went thru it to make sure I had my facts correct.  For me, lymphedema came as a result of radiation burn.  I had a lumpectomy in the fall of 2004 and started radiation during the Holidays of that year, ending 33 treatments by Feb. 2005.  I never had the 33rd treatment due to burning and swelling of the treated breast, at the time I remember showing up for it, but unable to raise my arm.  The radiologist Dr. gave me scripts for inflammation and antibiotics and sent me home, with a pat on the back: “to fight another day”.  Late that evening or early the following morning, I awoke with a feeling of a “2 ton truck” upon my chest and made up my mind that I was visiting my surgeon that morning.  I’m normally not a pushy person, but I knew where I was going, without an appt. and when I did show up at the office first thing, I was treated with sincerity and compassion.  The Dr. immediately started draining fluid from the breast with certain relief coming back to me.  Upon leaving the office, I finally realized what I must look like with sweat pants and a bulky sweatshirt jacket and no bra.  Across the hall was physical therapy and a “Missy’s Closet” for bras. Knowing that I didn’t want to put on another “athletic” bra, I went in hoping for something comfortable and explained my predicament.  That was the first time I had heard about lymphedema! The therapist explained, that although I certainly had radiation burns, it seemed apparent to her one side of my trunk was swollen, as well as my arm from the elbow up.  I was measured on arms, legs and sides of my trunk with a noticeable increase on my right side.   I was fitted with a “Belize” bra, (a long line bra, soft textured, zip up the front with Velcro adjusted straps for snugness. I followed up with appx. 6 appts. of massage therapy. As it was explained to me, the purpose of the Belize and massage is to push those fluids of the lymph on down the right path and eventually on out with natural waste.   I also was fitted with a “Jobst” elastic sleeve to wear when flying.
Please don’t become discouraged, I know it all seems frustrating and sometimes impossible, as helpful as that “Belize bra” is, I found I could wear it while sleeping, didn’t have to wear it as regular daily bra.  I have since taken up golf again and remember the first day I went out to “hit balls”, I suited up in the Belize and sleeve, ready to take the consequence of my choice to play golf and it’s alright, I only play nine holes and not that often, just thrilled that I can!
Another reminder; don’t have blood drawn or blood pressure taken from your affected arm and or side. We have to be careful about manicures and pedicure; no cutting of skin, it could start an infection in the lymph nodes.  No heavy lifting and really use those garden gloves, even to pull weeds.
I hope this is of some help to you, Blues Sue, yes, occasionally, it has returned, not as bad as the first time, but now I know the drill and don’t hesitate to get help.
Please don’t hesitate to contact me if I can answer any questions.
Good wishes
Elaine
 
dx 10/04 59yrs
lumpectomy right breast 11/04
dcis, idc, 3 nodes +
33 rads 2/05
lympedemia
tamoxifin 4/05
Willietattoos

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Re:Lymphedema - Tuesday, June 16, 2009 5:57 PM
Has anyone had, or heard of, lymphedema developing in a patient related only to Radiation Therapy, without previous lymph node excision? My Onc. Nurse mentioned this as a risk and recommended compression sleeve while flying, but the MD didn't seem very concerned about this risk. Thanks, in advance.
54 y/o, VA
DCIS (calcs found on routine mammo) 1May09
Lumpectomy (0.2cm area of DCIS w/ clear margins)20May09 
ER/PR highly Positive
HER-2 Negative 
Radiation-1st visit to Radiation Camp 6/22/09 
Tamoxifen pending

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