GRRRRRRRRR I HATE LE..........
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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!
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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,
Binney0 -
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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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.
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Good luck Joanne! I'm saying a little prayer for you now. Sending good vibes!
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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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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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Jo - good luck w/blood & MRI. We'll be waiting for your good report.
Varga - I had cording that was worked out by my LE/PT. It never came back so sorry I can't be more useful.
Hugz - exactly - pit & lat & tricep are ALWAYS tight no matter how much I stretch every day. Mine was caused by ALND surgery & rads for recurrent BC. And yes, just for fun it's also my right/dominant side.
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I have had cording since surgery February 2017! For the most part it's not painful it annoying! I notice it more at night when I have it. When I roll over it wakes my up. I usually work most of them out myself.I need to read more and find out what is causing it to happen. I just want to be mindless and color!! Not read more about LE or BC. Seems that's all I have done for over a year!
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thank you for letting us know Joanne! I got on here just to see if you posted hope the nausea lets up and the headache goes away. Get some rest tonight tomorrow's a new day!
(((((Hugs))))))
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Joanne I was checking in to wish you well on your tests tomorrow and see it's been done. Sending positive vibes your way for good results and a path to quick recovery! 🌻
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Jo - glad it's over and you're on the other end. Hope they don't make you wait too long for the results.
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Joanne - I guess some parts of that were good news????? I don't know enough about LE to offer an opinion. The one thing I will say is I don't feel there has been enough research on LE so how could the nurse say that?!? I wish ou could see my LE therapist! She's amazing! I've seen a total of 7 therapist who are LE certified and she always fixes me! I go next Wednesday I can't wait to find out abut the cording in my ribs and abdomen.
Lifting you up!!
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Joanne, secondary lymphedema absolutely can manifest in one spot like that. And in fact that's a fairly common location for exactly that. And lymphedema is an inflammatory condition, so flaring like this from an insect bite is certainly not unheard of, as is a long-haul recovery, since obviously the lymphatics are part of the immune system, and they're seriously compromised. Women I know who have had this kind of skin reaction on their breasts can take months for the redness to fade, and for some it has never faded completely. The swelling, though is able to be controlled once it's treated.
I too wish I could share my LE therapist with you, and like Varga I had to hunt for one who could help with all the obscure (to me!) conditions that have popped up. It helps if they have some years of experience, because while the foundational training is critical, this is a learn-as-you-go career. Those of us with LE are a challenge, no question about it.
So, after the nurse gets the results to your doctor, get yourself to that new therapist you mentioned. Definitely time for some intervention, and hopefully if this therapist doesn't know what to do about it she'll be open to an informal consultation with other therapists in the area (if you know of any but they're not on your health plan, take their contact information with you so you can share it with her.) My therapist has a circle of local therapists who meet once a month to discuss just such dilemmas. Who knows, maybe you can start some helpful sharing like that!
Bottom line, since there was "nothing concerning" found, it's time to move forward with good LE treatment. Whew! Glad that's behind you--a blessing that it happened earlier than expected, too. Rest up, heal, celebrate the "nothing concerning" finding, and look forward to finally being free to attack this from a new direction.
Onward!
Hugs,
Binney0 -
Jo, those are good ideas for re-starting self care. But do it gently and gradually. One thing at a time for a couple of days and see how it goes. Node clearing is good to do before a shower, then both when you lather and when you dry, do it gently in the order and direction of the MLD massage. It's quick, easy, and doesn't involve any more handling of the area than would naturally happen if you just showered. (Did that make sense?!)
If you have more than one doctor any one of them can write a referral. Gotta get creative here! (Sigh!)
Really happy and thankful for the scan report--yes!
Binney0 -
Jo seeing that you know more about LE that the whole bunch. You could try this. Rehearse some facts about le and why you need treatment( so I don’t swell and progress into a depressed state, etc. and they might get so stumped at their inadequacys that they might go ahead and sign you up for a le therapist referral. Sometimes when I go in with all the facts my doc recommends what ever I need as she knows I’ve done my homework.
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Jo, if you're looking for information to take to your doctor about LE, here's a page written especially for doctors, by a doctor with LE:
http://www.stepup-speakout.org/essential%20informa...
There's even a printable version available there to make it easier.
As for being persistent, of course you are! That's one of the prerequisites for qualifying to have LE--along with a talent for self-advocacy, amazing flexibility in adjusting to life changes...and a sense of humor. Also chocolate.
Hang tough!
Binney0 -
Joanne, I'm doing a happy dance here (well, and eating a chocolate whoopie pie to help you celebrate)!
For goodness sake don't be sorry about speaking the truth. If the woman has any desire to become the best LE therapist she can be, she needs to know she's not there yet. It could make a huge difference to her career. Let's hope it does. And in the meantime, the fewer people she discourages and actually damages with her incompetence, the better. That, too, is an important outcome of the truth. (On the other hand, one of my favorite mottos is, "She who speaks the truth should have one foot in the stirrup.")
Hope the dizzies come to an end soon. Could be now that you're moving ahead with an appointment your anxiety level will be much lower, and that too could help with those sorts of side-effects. August 27 is a couple of weeks away, but what a relief to know there's help at the end of this struggle!
Rest up! Do something to celebrate!
Binney0 -
Joining in the chocolate celebration !!! So glad you've found the name of a different LE therapist. As you said, you will know immediately if she knows what she's doing. I agree about resting up now. It's only two weeks.
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My first LE therapist was unprofessional. She came in later and was dressed like she was getting ready to clean house. I thought I was there for a cording issue. She measured both my arms and popped a cord. I was still doing radiation and she didn't want to do to much. NOTHING was said about LE! No hand outs no education not a word. I was set up with the PTA for a few weeks of "stretching "and sent out the door. 2 weeks later I get a call from the local Orthopedic appliance company wanting me to come in for a compression fitting! I have been to therapy for 3 weeks and no one told me I had lymphedema! I guess I should have figured that out on my own but at this point my brain had nothing left. A year later I've had some excellent therapist but that first one could have made a huge difference in my treatment. I'll have to have my chocolate today!
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Having 70 % dark chocolate bar with a fudgeycliff bar in celebration. This clocks in at least 500 cal but it’s all in celebration to JO so I’m ok with it.
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Hope the dizziness goes away soon! Be extra careful to...don't need any falls!
I had peanut MMs!
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Little Martha (LE arm) had a horrible weekend. We did not get along and she ruined my Saturday. But, after using th Pneumatic Machine, which I named Millie, some MLD, and wearing my sleeve, it is better this evening.
Will go to bed happy.
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Ohio. Sounds like you know what little Martha likes. Millie is her girlfriend!
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Jo Yes your arm is Jekyll and Hyde! I call mine,” my stupid le arm” (it’s such a long name,I should just call arm MSLA short form for long name) when it gets in the way of life. My le has been cranky in upper trunk and breast past few days and wants to creep up higher into pit instead of the rubbery boiled egg feeling in back. I’m sure it’s the weather! I’m moving it around exercising which helps. I know you have limits on exercise.
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Mine is Puffy McPuffins 😜
I feel like all of our le is so completely different from everyone else’s. Such a strange condition.
I was unable to do MLD on my arm, as the fluid tended to get stuck in my chest... where my mets are. See, my mets came back with a vengeance in all of my lymph nodes on the left, from cervical, axillary, supra and sub clavicular and pectoral. Same side as LE. Wrapping helped tremendously, though. I lost over FIVE CUPS of fluid after wrapping a few days a week for three weeks.
Jo- if you don’t mind telling me, how did your angiosarcoma present? I’ve read that it’s rare, and until you, I’d never even heard of it.
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Jo - if you have a good dermatologist, that's a great idea. Can't hurt anyway.
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How scary, jo! I should pay more attention to things, but honestly, I probably wouldn’t have thought anything of a bump, as I already have skin issues. Thank goodness you did pay attention
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Jo - I cannot imagine how that could’ve scared anyone. I appreciate your post. Knowledge is power. And again, it is incredibly rare... which you’ve stressed. Please don’t feel like you’ve done anything wrong. Xox
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Joanne - I felt that you were educating me! I knew nothing about it! Just like the LE! We should know every possibility with all our treatments!
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