GRRRRRRRRR I HATE LE..........
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welcome to the "swell sistah site"onward.. keep coming back here. the ladies have so may links, so much research. they've been a lifesaver, fo me!! 3jaysmom0
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Suzy,
I love this guy, too!! I have been away for over a week with no computer access, and I sure have missed you ladies!!! You definitely get me, and I am so grateful to have others who can "validate my reality." That term is just perfect, Kira. I thought I was going crazy - and that the doctors were putting that crazy label on me - until I finally saw my LE therapist who confirmed my truncal LE. Such a relief to hear that, even though it's not the diagnosis anyone wants.
Imc, I am thinking of you and hoping for best test results.
Laura, I love your new pic. You are cute as a button. And, yes, I am so glad you started this GRRRR thread.
Hello, to the newest members of our swell group. I'm sorry you're here, but glad you found our forum. The women here are so nice, supportive, and informed.
I need to catch up . . .
Tina
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Thanks Tina
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Suzybelle - I was sent to a pulmonologist after developing breathing problems a year ago. Of course I had to have a chest xray because the GP immediately goes to the cancer diagnosis and I guess she was thinking it might have spread to my lungs. I know they have to becareful with us but I guess sick of it always being about the cancer. I'm still a person!!!! It was asthma and the pulmonologist is one of the kindest doctors I've ever been to in my life. If the oncologist treated me half as nicely I probably would have a different outlook. The pulmonologist saw that I am a degree as a medical librarian. He said, "It is nice to work with educated patients who want to be involved in their treatment." Oh my goodness, I couldn't believe that after being told by the oncologist that I should stop looking at information on the internet and just do what he tell me! My asthma is now well controlled. The pulmonologist sent me to an allergist, who is also very nice. Mine had an allergy component had after allergy testing, they decided that allergy shots would help. After a year of shots, the allergist has now reduced the asthma medication. So, I hope you will also find the kind treatment and actual help with a medical problem.
Also, these doctors should not be so quick suggest anti-depressants with any of us that are taking Tamoxifen. Mayo Clinic site discusses whether anti-depressants may effect the way we use certain medications in our bodies. There is a genetic test to see if you metabolize Tamoxifen normally (which I do). They found that certain anti-depressants weren't working in some patients because they couldn't metabolize the drug correctly. This lead to development of other genetic tests for other types of medications. Knowing about this was part of the whole conversation with the oncologist telling me to quit researching information. Well, if you aren't going to inquire about it, I guess I'll have to do it myself - why on earth would be have medical librarians if bozos like this don't believe we can do research?
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KansasKay, Medical librarians are essential--when I was working developing curriculum, I'd get stuck and the reference librarian would suggest a new word to use in the search, and it would fix every thing!
The latest from San Antonio is saying that the enzyme test for Tamoxifen shouldn't be used outside a clinical trial, and they're even questioning the drug interactions. I went to Dana Farber to be in a clinical trial for tamoxifen, and by the time it made it out the IRB--I was on it too long to meet criteria. Of course, it's just an abstract, but the whole issue is evolving.
If I didn't do my own research, or read these boards, I'd be clueless.
Glad your asthma is better, and too bad about the onc's with attitude.
Kira
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Hi Ladies - I've haven't been on this thread in a long time. My truncal LE has been pretty well controlled and my are LE is much better. I'm having a lot of trouble with cording. My LE therapist has been doing the stretching and massage techniques to break it up, but I have the most stubborn cords of anyone she has ever seen. The treatment has been excruitiating. Anyone else experience this pain with treatment? I was a sobbing mess after the first treatment. It honestly felt like she had a screwdriver in my arm and was twisting it. The more recent treatments (I've had 4 thus far) have been less painful and I'm tolerating it much better as some of the cords have broken. I can't wait for them all to be gone.
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Hi Everyone and Newbies
ROCKET, as far as the cording stretching and release I HEAR YOU. The part involved in my forearm sometime I felt as if I were ripping and tearing during the massage and cord release....as well as the further up my arm it went. I still am working on a big wire in my armpit that heads towards my BMX scars..... during LE/PT I felt like that area was being DRILLLLLLLED with PT's thumbs. I did get jumpy on the table. HELL I am still jumpy LOLOL. But it was worth it to get rid of the cords.
Anyway I wanted to just say GGGRRRRRRR. Last Friday I vacuumed the LR/ DR/ kitchen.... spiffed up the bathroom and guestroom. At the end of the day I felt like my armpits had baseballs in them, so HEAVY and full feeling. My cords were really tight. My pecs were tight. I was BESIDE MY SELF. No arm swells..... DH massaged my chest/ incisions. Now does this sound like the Swell club or just post op BMX stuff that is really keeping me STUCK.
Then I went to a party on Sat. and everyone kept telling me how GREAT I LOOKED. People that never told me I looked great b/f when I had Boobies. I am really trying to embrace my inner Amazon Woman, but it is very hard.
Brownies, with choc frosting and white choc chips comming up soon.
Ya all hang tight
Hugs
Brazos
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Rocket, cords do hurt--mine hung in there for many months. I heard a lecture at the NLN from Jodi Winicour and she doesn't like to deliberately pop the cords, as it can damage healing tissue, but if they pop while being carefully stretched, that's okay.
Did you ever see the axillary web page?
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Brazos--I'm over two years out from radiation, and with the cast, I couldn't really stretch, and boy did I get tight.
Embrace the Inner Amazon--well put.
Kira
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I have to have a big GRRRRRRRRRRRRRRRRRRRR moment. I went to see my onc today and as I hadn't heard about my MRI appointment I asked him to ring up and find out when it is. Well apparently it was last Friday and I was suppose to use my gift of ESP to know that. The poor onc had a heck of a time trying to get me a new appointment because I "didn't turn up to the last one". Given that it was urgent 1. don't you think they could have called me to tell me when the appointment was and 2. when I didn't show up couldn't they have called me to see why? Honestly! Now I have to wait until next Monday!
On a happier note-I had my first massage today. Is it normal to feel slightly sensitive and bruised after? She was very gentle.
Thanks for letting me GRRRRRRRRRRRRRRRRRR!
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KansasKay, thanks for the info. - I have been reading about possible links between Tamox. and asthma - I have no idea what's up but figure you are right and asthma is the culprit. I hope.
lmc - ARGH! That is horrible!!!!! Those people need a major slap. ARGH. As far as the sensitive/bruised feeling...she may need to be even more gentle. I don't ever feel that after my LE therapist does MLD, but some of the other ladies may be able to chime in on that.
Merry Christmas/Happy Holidays, Ladies!
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ugg about that appointment. I was very sore the first week of MLD. I chalked it up to having been so sick and that I hadn't done anything for months that her just touching me is what caused it. I can't wait to go back Friday.
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IMC, soreness when starting MLD is not unheard of. But do mention it to your therapist so she can make adjustments. Some people even experience some nausea at the outset, but it diminishes as treatment progresses. So much about LE has never been investigated, so it's not well understood. In a way, we're all pioneers!
Bleeeeeeeah!
Be well,
Binney0 -
Oh, and when do you start ESP therapy?
Obviously you have a deficiency there!Grrrrrrrrrrrrr is right!
Binney0 -
Ran across this article via twitter. They're starting to look out for us!
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Thank you for posting the link Dawne. I would be so happy if this could become routine. I feel so sad it was not available to me. I went in to radiation therapy blindly compared to what I now know. Sigh........
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Sharon, I complained--I was concerned about how much of the field involved my axilla and was told that radiation to the level 1 nodes NEVER causes LE (!!!!!)
Here's link to Andrea Cheville talking about her research:
http://newsblog.mayoclinic.org/2010/12/06/lymphedema-study/#2
We had a thread about this, and most of us who posted felt glad for the future, and sad that this kind of concern and awareness was not available when we were treated--or actively denied.
Kira
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Would it be too much to ask if I could have another GRRRRRR moment so soon? I just got back from an emergency appointment with my doc-turns out I have mild cellulitis. I guess it's good to know all this pain hasn't been in my head
) So apart from antibiotics-is there anything else I should or shouldn't be doing? Besides taking up drinking???Lisa
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lmc, girl, you cannot catch a break. I am so sorry about the cellulitis. Leave off the MLD and the compression garments until it's cleared up. And I'm sure your doc. told you to keep a close eye on it - it's nothing to play with. I had a bout of it in July and the worst part (besides the fact that it hurts
) is that it just plain made me feel bad.Get better soon and you can have as many GRRRRRRRR moments as you want!
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Thanks for the advice Suzybelle-my doc didn't actually give me any!
And thanks for allowing me to GRRRRRRRR....unfortunately life just keeps chucking crap at me!
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Kira - If only, if only we had been told the truth! Like you, I was told the same thing - basically, don't worry your little head about that. When I was reading every book I could get my hands on prior to treatment, they talked so much about surgery and chemo but very little about radiation. Most of the books didn't have more than a couple of pages on radiation. I knew about lymphedema in the arm because my grandmother had it. She had a radical mastectomy back in 1970 when she was 78 yrs. old. She suffered with it till she died at 97yrs. Sadly, I'm not sure our family gave her that much sympathy because it seemed that her sons always tried to change the subject. I insisted on a sentinel node biopsy because I didn't want to end up like her. Little did I know that there was another form and you gave me the first clue to what might be wrong.
Do you have to be referred to a physical therapist for this kind of treatment, as you do with other kinds of PT? Through our social worker at Gilda's Club, I have found out that there is a PT in the area who is a lymphedema specialist. Since the oncologist blew off my symptoms, which are exactly described on the link you provided, I wonder if I'm going to get static about a referral. I posted a rant about the whole story with the oncologist in another thread, when I was thinking about canceling my 6 month checkup. Thanks to my husband's job, we have good insurance, with PT benefits, but I'm about ready to private pay if needed. My quality of life suffers because I limit my activities so I won't be hurting at the end of the day. Since I had the surgery on the right side and I am right handed, it is hard to live any kind of a normal life without using that arm. Thanks again, Kay
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KansasKay...
I simply told my Breast Surgeon that I wanted to be evaluated for Lymphedema/ PT and he gave me the script for it. Hope this helps.... just ask for what you need, as LE is falling thru the cracks of ONC/ Rads Onc/ and Surgery.... and no one is on the same page in the Medical/ Surgical Realm. LE Stands Alone unsupported and unacknowledged for the most part. I find it a TRAVISTY as a RN. GGGGGRRRRRRRR !
Lmc...
So sorry! Here is a GRRRRRRR from me to you about the whole cellulitus thing... get well soon.
(( Blessings))
Hey to EVERYONE Here too.... Good thoughts and Vibes, and NO SWELLs or Cellulitis Either!
Brownies under the Bed Later OK?
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Drinkings, I think, is madatory ; ( How high was your fever? and why are they caling it mild? As Suzy said, no more compression garments til the flare is over. My PT also said no massage/evercises, dont want to spread the darn bacteria thru you system. IS is strep or staph? If the oral antibiotics dont work, get back in and ask for an IV antibiotic, unfortunately that is inpatient usually. NO hot showers, you dont want to aggravate your lymphedema. Rest up and heal quickly! hugs Terri
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Thanks Brazos
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PS I dont wanna brag but I AM 107 days cellulitis free! I did get a bit "lazy" Monday, I was home, not feeling well (bladder infection from the antibiotic****oh! LMC, get a probiotic or asidolphalis? or eat yogurt, to avoid bladder/kidney/yeast infections from your antibiotic!) anyway, I usually take a luke warm shower, and do half my exercises/massage in the shower, get out, lotion up w/eucerin and then after dry, put on my compression garment...BUT I was home, not feeling well, and decided to myself "I can go ONE DAY wwith out that darn sleeve, and exercises" NOT A GOOD IDEA at all! by the evening, my hand was puffing out, and the biggest disappointment is my chest is tender and aches (below my collar bone-probably fluid build up) and I have pain, trouble raising my arm (tightening, pulling, limited range of movement) WHAT THE HECK was I thinking? I did PT 3x a week (2 hour appts) to get rid of the chest/shoulder crap...and ONE DAY, one lousy lazy day...I back track that far...argh!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am doubling up on my exercises today, nice and slow...easy does it, (focusing, thinking, praying)good bye fluid...and IMC, maybe you shouldnt drink wine, or anything that makes you retain fluid, lay off the salt...to keep the lymphedema at bay so it doesnt make the cellulitis worse or stay longer. MY EPISODES were always short lived, spots turned to welts, achy, swelling, fever, sunburn spreads from wrist to across trunk, fever breaks, rash fades, 24-30 hr cycle, it was the repeatedness that got me...HUGS again, terri
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Getting a PT referral: If your breast surgeon (or oncologist) is not cooperative, ask your interest or gynecologist. I finally ditched the surgeon who kept telling me nothing was wrong and called my dear internist. Now, I just call her office anytime I need a Rx to see a PT or to order a new sleeve and they FAX it wherever it needs to go. My internist doesn't know much about LE but she sure never gives me a hard time about having it!
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Thanks for the info Terri
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Imc, geesh! I'm sorry!
Yes to drinking lots of water. And do try to keep the arm gently and comfortably elevated. Lots of deep abdominal breathing. No compression or MLD until the infection is completely under control.If it gets any worse (spreads, hurts more) get to the ER for IV antibiotics. (I keep a small bag packed with things I don't want to be without at the hospital, just in case -- meds list and medical history, LE alert bracelets and g-sleeves, a set of arm wrapping supplies, LE info sheets to hand out to every medical person I come in contact with
, comb, toothpaste, individual packages of hot cocoa mix -- all the important stuff!
)Keep us posted, y'hear?!
Binney0 -
Great info-thanks Binney. I did notice a small red patch when I went for my first massage but I didn't know what it was....I think that might have helped the infection to spread and that's probably why I hurt so much afterwards....live and learn!
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IMC i'm sure its' no relief, but its' in your lymph system, and not all in your head!! here's a
GRRR
RRRR....for you, from me. be well. 3jays0 -
Thanks 3jays
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