GRRRRRRRRR I HATE LE..........
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GMA interesting. Estrogen is stored in fat so that is why they are doing the study more than likely.
What is the two day verses the 1500 cal diet? I'm intrigued, how long will you be on it?
How much time do you spend on the tramp twice a day? I only go on 5- 20.mostly 5 at a time
Wow your doing good, you should consider joining us on the kick butt thread, even once in a while You could encourage all greatly. I am so happy for you. I remember when you had such trouble getting your LE in order. Kudos to you and keep it up. 😄
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Hugz - They were only doing a 3 month study - will be done with it next week - But I am going to stay on the meal plan - I need to lose 30 more pounds.
Basically the 2-day diet (the one I'm on) is 2 days high protein, low carb, 1000 cal. - They give you a list of things you can have and you tally your servings sizes instead of counting calories. I am no good at counting calories ;-) . Then for the other 5 'unrestricted' days, you are on a mediterranean style meal plan - They give you a spreadsheet - how many servings of protein and carbs depend on your age and how much you weigh - so for me I get 8-10 servings of protein, 7 servings carbs, 2 servings of fruit, 3 servings of dairy, 5 servings of fat, and 5 servings of veggies (2.5 oz/serving). You can google 2-day diet and will get a link to the book we are using. For me it is fairly easy to be on now that I have learned it, but in the beginning it has a high learning curve. Lots of questions and for anyone with OCD, it is frustrating. They make this plan to be flexible to your lifestyle. The 1500 cal diet is just that - eating low fat but 1500 cals a day.
On the tramp, I spend 5-9 minutes/ 2 times a day on a good day - I have had a start of a cold so I have slowed down.
I started going to the kick butt thread a long time ago, but with all the nerve pain I had, I couldn't seem to do anything. Now, since the breast reduction/reconstruction, the pain is gone so now I'm able to exercise. It feels so good to not be a couch potatoe anymore
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Go Gma!!!
How hard do you bounce on a rebounder? I keep thinking I would try one, but I have discs issues in my neck and wonder if the bouncing would bother it. The weirdest things set it off,,,,
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Glennie - not hard at all - heel toe heel toe and you start moving then just go with the flow. Get stable shoes or you can have knee and ankle issues. The video I watched says any movement is good.
I would ask the doctor first - I have knee issues and it doesn't bother the knees - As I said earlier, I don't even lift my feet off the matt.
I'm not sure I'm allowed to link the video.. but here it is - [
https://www.youtube.com/watch?v=Y5dJQjDN57w]Note: skip the introduction - don't do what the gal is doing in the beginning - I don't do that.
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https://www.youtube.com/watch?v=Y5dJQjDN57w I think I made it linkable
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I talked to my LE therapist about it today. She's never heard of using a rebounder for LE. Gave her some homework! LOL!
She wonders if it would bother my neck and the herniated discs,,, so I do hesitate,,,
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I hope this is the right place to ask a question, if not would you point me in the right direction?
I think I made a mistake this morning
. I went to get my port out finally. I've been out of treatment for awhile and I have never had any signs of lymphedema so I don't really think about it. I had a left MX back in 2014 with 9 nodes removed & they told me to never have my BP taken on that arm. Well I totally forgot about that this morning and they put that automatic cuff on my left arm. It probably took my blood pressure 7 or 8 times. Yikes. How much of a problem have I created for myself? What should I be looking for as far as symptoms, and how long will it take to show itself, if it's going to? I did pull out my sleeve and put it on, hoping that might help. Any input is appreciated!
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Gma - I'm really intrigued. What brand do you have? Is there any need to spend several hundred dollars on a particular or fancy model? I don't mean drop back to the bottom of the line, but the Urban Rebounder is on sale right now for $99 w/free shipping.
My son hadn't heard of them either. He said I'd probably just use it once & put in in the closet. I think not, since it really doesn't appear to take up much room - like a treadmill or elliptical would. I was walking 5 miles a day before BC, but the indoor track I was using has closed, so... I wonder if this qualifies for "weight bearing", which is what my bones need to repair the osteoporosis damage from chemo. (and of course from sitting on my butt for two years).
Did you say you wear your sleeves when you use it? I wear truncal compression 24/7 but only put on sleeves for repetitive or heavy movement or for flying.
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BlownOffCourse, welcome! Sorry for the worries that bring you here, though. You might want to get yourself a medical ID bracelet that says something like, "NO needles, NO BP this arm," not just for medical emergencies, but to remind yourself to offer the other arm.
First of all, not everyone gets lymphedema, no matter what they do. We've had women here who have bucked hay bales after losing 20 nodes, and they've never had a problem. Others of us get lymphedema after a prophylactic mastectomy with no nodes purposely removed, even though we've taken all the so-called precautions. In other words, there's no way to know is going to cause you trouble.
That said, avoiding BP on that arm, especially an automatic machine, is a smart thing to do in future. You might want to get yourself a medical ID bracelet that says something like, "NO needles, NO BP this arm," not just for medical emergencies, but to remind yourself to offer the other arm!
The signs of lymphedema include achiness, heaviness or pain in the arm, or just a "funny feeling." Swelling is of course a symptom, but it can be hard to distinguish early swelling. Here are some photos that might help:
http://www.stepup-speakout.org/What_does_lymphedem...
Have you seen a well-trained lymphedema therapist for baseline arm measurements for future reference? If not, now's a good time to get a referral for that. Here's how to find a well-qualified lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Lymphedema can also occur in your breast, chest, side, axilla or back, so keep all those areas in mind as well. It can develop immediately or several weeks later. If you sense any problems at all, see a therapist promptly--early treatment of lymphedema makes it much easier to get under control and keep it that way!
Hopefully this won't cause you any grief at all, but even if it doesn't that won't necessarily indicate that you're free to use that arm without precautions. Sometimes it's repeated insults to an already compromised lymph system that finally pushes it over the edge.
Gentle hugs, and may you never join our "swell" sorority!
Binney0 -
Where is Urban Rebounder on sale, minus two
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Binney, thank you, that's a lot of really helpful information! I will definitely get a bracelet. I did see a therapist right after surgery and she took measurements all along my arm, so at least I have a baseline.
I will have to be more vigilant from now on.
Again, thank you so much!
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Marijen - I just googled 'rebounder'. There were lots of option, including Amazon & WalMart.
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Soon after my first diagnosis, my mother-in-law (a retired chemo nurse) told me to sign up for a Medicalert bracelet. See www.medicalert.org - my bracelet is engraved with "Lymphedema alert: No BP, IV or injections R arm" along with my membership number and phone number to connect to further info, including next of kin, doctor, etc.
I used to wear it on my LE at risk R arm, but once i actually got LE, I had to move it to the other one because of my sleeve. I had to go to the hospital yesterday to have a port put in, and they put a big pink band with a warning printed on it on my R arm over my sleeve, so there was no doubt.
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I had a 29 dollar rebounder then I got a urban rebounder at a garage sale.it is way easier on my knees than the cheapy model I first had. It folds in half but it's seized up and I can't fold it. I actually really get a good workout even for five minutes. You really can get breathing on that if you want. I think the urbanrounder was a couple hundred bucks when they first came out years ago.my springs are awesome.
A hoopla hoop weighted is awesome to. When I do it I often wonder if it's stimulating my lymph as I try to go up and down my trunk while hooling and it gently pulls my skin if I am bare waisted. They are about 20.00 really gets you breathing.0 -
This is the one I have and have not had any problem with it - http://www.amazon.com/Stamina-35-1699-InTone-Oval-....
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Hmmmmmm,, $99,,,,, Could be worth a look!
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Reporting in: went ahead with the cortisone shot earlier this week. Wow, what a difference. Pain markedly improved and I've had two sessions of PT, both way more productive than before. Worth the risk to be rid of the pain.
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Yes! Way to go! So glad you're experiencing such relief. Thanks for letting us know,
Binney0 -
We must be related. Your Sept 15th post could be mine.
Short history: I was diagnosed with Stage IIIC, IDC & IMPC (very bad!) in the fall of 2008. 20+ nodes positive, dual dense chemo and radiation. Went on Arimdex, then Femara, and then Aromasin. Awful time on all three drugs. My life was a misery due to BC treament. And then there was LE, and I really learned what misery could sink down to.
My LE suddenly worsened in late summer 2014. I began seeing a LET last November. MLD did nothing for me except for about 45 minutes of a slight decrease in arm fluid. So! My LET decided I needed to start CDT bandaging. Before I share THAT story, let me explain why I am unimpressed with MLD, the LE massage technique. You may find my experience useful. Enlightening even.
MLD was "created" by Dr. Emil Vodder. He and his wife opened a clinic on the French Riviera to treat folks (think rich) for sinus problems, etc. Dr. Vodder came to the conclusion that the lymph system was the culprit and gentle massaging could cure many health problems. The first PROBLEM for me is that Dr. Vodder was a doctor only because he had a Ph.D in Art History. Yep, art history, not medicine. My second issue is that MLD is 85 years old, and YET, this technique is STILL considered the "gold standard" of LE treatment even today. In 2015.
And just who is charged with providing us with treatment for LE? PTs! Physical Therapists that usually are certified in MLD and CDT (not always even that), and they are called LETs. LETs are taught MLD along with CDT, which is 35 years old! LETs are not always the best sources for help. They definitely have their limitations, as I found out.
So ask yourself this: Why the heck is an 85 year old treatment modality considered awesome? Because little research & development goes into LE, so we women are STUCK with an outdated treatment methodology. And I consider MLD and CDT outdated to be sure! Can you think of ANY other medical condition, like heart disease, diabetes, strokes, etc. that would consider an 85 year old treatment technique to be state of the art, or the "gold standard" of care???? Heck, no! And neither should we.
Back to my CDT experience: For 4 weeks beginning in April, I saw my LET for the CDT bandaging. I consider bandaging to be barbaric torture. I was never so miserable in my life. I literally thought about suicide. However, my LET insisted that I had to complete the 4 weeks because.... because.... she said so. CDT was worthless, even more so that the MLD. I lost a meager 5cm, less than 1/2 an inch of arm volume in that 4 weeks of hell! That's it. But I gained INCHES on my upper arm, shoulder, back, face, neck, trunk, side, and hip. ALLLLLLL that fluid in my arm was pushed up and there it stayed. My LET didn't know what to do because all she knew was MLD and CDT. I hate this LET for what she did to me. At the end of the 4 weeks, I asked this twit with a Ph.D in Phys Therapy and LE certification what her plan of care was going to be for the excess fluid in my arm that she caused. Her reply was a dumbass comment that I should go buy a men's compression shirt because it has longer sleeves than a women's shirt. That was the extent of her knowledge and training which, of course, focused on MLD and CDT like most LETs. She was unable to think outside the box.
I was a mess. My upper arm ballooned to 25" inches in circumference! I could no longer wear 99% of my tops. As it is right now, I am down to 6 summer tops that I can still wear. SUMMER tops! I can't find winter tops that will fit my arm or my trunk. My new LET estimates that I have gained 30 pounds in my arm, shoulder, etc. I think 50 pounds of my overall weight is trapped lymph fluid with no where to go. 50 freakin' pounds!
So here's the deal: You had Stage IIIC breast cancer with 24 nodes removed and 7 positive for cancer, plus chemo, and radiation. All these mean you have heightened risk factors for LE, more so than other women with BC. Your lymph system is damaged. MLD and CDT may either not help or may cause more damage in your situation. That was my case. I NEVER should have had the CDT bandaging. It is possible that your arm's delicate lymph pathways have been damaged, meaning your upper arm lymph fluid is trapped in place, like mine is. Your radiation no doubt cooked your chest area, further damaging/destroying your lymph system.
What can you do? Well, my health plan, Kaiser, has ONE doctor 2.5 hours away from where we live that focuses on LE. He is a vascular surgeon that developed an "interest" in LE and that is now his focus. He immediately realized that CDT bandaging was a very bad thing for me. I suspect it would be a very bad thing for you, too. This doctor agreed I needed a compression pump for my trunk, arm, and shoulder areas. FlexiTouch has the best pumps, but my health plan will only approve a cheaper pump, the Bio Compression SC-2008 model. Some women have had good results, but not as much as the FlexiTouch does. He also recommended a really custom arm sleeve made out of material used for LE leg sleeves. I am allergic to fabric used in the usual arm sleeves..... And! If I need even more help. he wants me to try cold laser on my chest where I have the radiation damage. This is really new stuff! Not 85 years old. Not 35 years old. Cold laser is cutting edge.
I suggest re-reading your initial paperwork, test results, and reports, and then re-examine all you've tried to help your LE. Make a timeline if necessary. Ask if there is a DOCTOR with LE experience that you can see. If not, ask WHY NOT? Ask your PT/LET more questions about her training. What else besides MLD and CDT is she proficient in? Does she have actual experience with compression pumps? Kinesio taping? Other techniques? A good pump that massages your trunk, arm, and shoulder/back may be your best hope for LE. Look into clinical trials, too. Just don't rely on MLD, CDT, and compression garments alone. They are NOT always the answer as you have found out.
You bet I am angry! Beyond furious even. And I am so glad I found your post. Please, if you have any questions or comments, please feel free to contact me. I feel we are "related," and we share many aspects of how LE has affected us and why.
Nancy B
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Dear Stella Starr, I'm angry too, I'm with you! It is horrible what has happened to you. First step attorney? Next step lymph node transplant? To be paid for from settlement? This woman LET should be off the market. Someone here gave me the name of an excellent Lymph Node Transplant Surgeon. This doctor is in one of the Carolinas. I saved the information. BCO member was in Boise and flew east for the surgery. But I'm sure you can find others closer in. Wherever you got the LE, surgery, radiation, chemo, the LET made it much worse. Someone should check out her credentials. I feel for you.
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Did anyone else notice an ad on TV for the American Cancer Society? A woman who has had breast cancer is wearing a compression sleeve. Makes me wonder if LE is on the rise.
@stella, thanks for your post. It reaffirms that I need to take everything I'm supposed to do seriously and maybe even question some of it. I was taken aback when I found out that my LE care and treatment would be with a PT, but I can't see her without an order from my Dr. The rads Dr. now wants the surgeon to write the script and the surgeon wants the the rads Dr to write it. If or when I get into trouble and things progress I have to deal with the fact that no one wants to deal with me. Without this forum I would feel completely alone.
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Probably just want to let people know that it's still a thing!!! I've had nurses tell me - you can't have lymphedema, no body gets that any more. Yay for the ad showing that!!!
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I've just come across this interesting study on the everyday effects of lymphedema:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795115/
Does this parallel your experiences? I have LE, but I also have severe nerve pain in the same arm, especially when I stretch the arm out. I was told this was probably a side effect of the radiation or surgery - nobody mentioned the possibility of it being a side effect of the lymphedema. I am having an MRI of my shoulder, arm and neck to try to pin down where the nerve pain is coming from - nobody had considered it was the LE causing it - not even my LE therapist (a qualified physiotherapist)
Does anyone here have a similar issue?
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Suems, have you considered "cording", which is also called Axillary Web Syndrome, or AWS? It's a fairly common problem following breast cancer surgery, and typically the main symptom is pain when you try to straighten your arm. It can last a long time (especially if untreated) and it can return again after it has resolved. Many women can feel a "cord" running down their arm from the axilla to the wrist, or some part of that route, but others can't see or feel the "cord" at all and still have the pain when they try to stretch out their arm. There's more information about it here:
http://www.stepup-speakout.org/Cording_and_Axillar…
Hoping you get solid answers and real relief soon! Gentle hugs,
Binney0 -
suems - I had something similar, and still have some trouble with it. My LE therapist said I had nerve impingement from the MX and Rads. I didn't have cording, she ruled that out. It would zing down my arm every time I stretched it. She did some myofascial release type things on my chest and some stretches, if I don't keep up on the stretches it gets stuck again and starts hurting.
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Suems - My cording was resolved by PT but radiation fibrosis permanently changed the internal tissue & that makes lymph flow more of a problem. Like Linda, if I don't continue to do my stretching exercises regularly, in addition to MLD, I end up with pain & swelling.
Susan - my RO is the one who wrote the PT orders. She continues to be regularly involved & interested in my care more than a year after rads. My BS doesn't seem to understand it as well, but she too has offered continuing 6 month check ups since both my MO and my GYN have retired. The last ALND surgery was October 2013 so I feel very lucky she's stayed involved.
Edited to add - and YES - I would like to go to bed just one time w/o a compression vest. Or wear many of the tops I had before BC that now show the thick straps of the vest during the day.
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Got my rebounder put together today. $60 Sunny Health at Amazon. It's just great, just unfold, put the legs and the stabilizing bar on - well not that easy my sons did it for me. I have some trouble with directions : ( Femara brain? Already bounced a few minutes. And then my DIL nurse says, "you should not be getting lymph massage of lymph treatment until cancer treatment is over". I researched that a few months ago before I went to the LMT for training and read it's a myth, right??? The lymph moves when we move our bodies. No way that can cause cancer to spread, right? : )) Then all the exercising would be for nothing...
Well the good news is I don't have LE but I also haven't started radiation.
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SusanSnowFlake,, that is insane. Who cares who writes the script?? It's just a script. Your PCP could write it. I got my MO to do it, cuz my BS didn't think I had LE. **you only had 6 nodes removed and you are slim,,,you won't get it**
Stella: I feel your anger!! 99% of what I've learned about LE, I've learned here on the forum and with links to StepUpSpeakOut. I too was told to get a compression tee shirt,, but then what to do when none of them work for me? My LET has no idea what to do. I will say that she tries,,, when she went to the big LE conference in San Francisco, she ran around and talked to vendors trying to find something that would work for my truncal LE,, but to no avail. It was either things that I'd tried already that didn't work out, or things that as a uni-boober just won't work. What I found that works for me,,,, I figured out on my own with help with these sources here. I'd be up a creek without a boat without this place!
Linda: where on earth did those nurses get the idea that LE is cured??? **saying bad words over here **
Hope to see that ad on TV.
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suems: that is a great article!! Thanks for sharing. All doctors should have that as required reading!!
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I needed a good laugh today! When I chose to have a mastectomy of my right breast I could deal with losing my breast, and even with the fact that reduction and lift of my left breast left my nipple numb. The one thing I prayed most for was not to get LE. I was good for over a year, and then my first recurrence included tumors in my neck, armpit, around my implant, and my upper back. The stupid, lazy Dr. I was going to kept ignoring the fact that I felt lumps and was losing feeling in the fingers of my right hand. By the time I fired him and went to Cancer Treatment Centers of America, I had lost function of my right hand. My hand now is nothing but a painful pins and needle, crippled, mess. Luckily I am left handed! The tumor in my armpit crushed the nerves and caused LE. In the summer of 2012, my arm was huge and my fingers looked like sausages. Nothing helped at all until I went on Xeloda and Tykerb and the cancer cleared up.
Now I have a constant reminder of my cancer. My arm does not swell up very much anymore, but it always feels tight, and half of my arm is numb also. I have some cute sleeves from Lymphedivas but everyday someone asks me what's wrong with my arm. I am going to start saying things like a shark bit me, I have leprosy, MRSA, gun shot, etc. At least it will give me a chuckle! Lymphedives just included gloves in their product line to match each sleeve. I am actually looking forward to getting one because it will hide my deformed fingers and hand. I think it will be easier for me because I can't use it. I can see how it would be such a pain in the butt if you had to wear one and do things with it on.
Before bc I loved to sew. I made handbags, and vintage reproduction clothing and aprons. I sold them on Etsy and I was getting a lot of notice in the community. My business was growing fast, and I loved it! It was my passion. Well bc ended that career/hobby/passionand that has depressed me more than anything else these past 5 years. I have tons of beautiful fabric that I will never be able to use and it makes me want to cry. I hate having this disease! I hate that it has left me deformed, scarred, ugly, fat, and needy. I too want my life back. And now to top it all off; I found out last week that my implant ruptured so I will have my implant removed. Great! Merry Christmas to me!
Thanks for this thread and allowing me to vent. Prayers we all can someday benefit from a cure or treatment.
Barb
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