Kicking LEs butt!! Exercise & Self Care Log
Comments
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I will be starting radiation soon and some Dr's give tatoos to mark areas for radiation. I already have cording and some LE and thought we were supposed to avoid tatoos. One Dr. said they were small so OK. Any thoughts from your doctors? Should I insist on other type of marking?
Thanks!
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My doc gave me the choice for tatoos or not. I went ahead because it made sense to have the best possible positioning each time. They really are no bigger than a small freckle. Interesting that I never considered a possible tie in with LE all this time and I don't recall seeing it mentioned on the boards.
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LE in the summer - Great article from CURE reprinted courtesy of WearEase
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TxMom3 - problems with tatoos were never mentioned, even if they are very tiny. Unless there is a need for them beyond radiation, is sticky dot an option? Something that would take more than soap/water to remove?
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Thanks everybody. I found a radiation oncologist close by that only does other types of markings (permanent type pen covered by waterproof tape). The tatoo encouraging dr. was my second opinion but at a very good research type hospital. Also thanks Minus Two for the great resources you share!
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Has anyone found a "user friendly" measuring tape to help with self-monitoring? I find perception unreliable. My left hand is just too clumsy to measure the right arm. I see some tapes measures on amazon geared towards body builders that let you snap the end into a lock. They are cheap, but maybe an answer. Probably won't see the therapist as often since she thinks I am am managing it well, even though it goes up and down. Any experience out there with laser therapy or surgical node transfer? Are they just temporary relief? I think there is more than one forum for lymphedema, so might post this on those as well.
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Hi all,
just letting you know that I’m still chugging away at exercise. Only walking about twice a week because I have been gardening many hours a day and too tired to walk. Been giving my organic veg away to needy during covid. All very rewarding!
Still weights twice a week but increasing to three times this fall.Big toe joint problem last week but trying to work around it to get my cardio in. Smoke so bad here That I am Doing cardio inside tomorrow. Hula hoop, dancing, walking on spot anything to move!!
Minus and Vargadoll are you still at it?
Let’s go
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Hugz - good to see you. Sounds like you're keeping after it. Great that your vegetables are so productive. Sorry to hear about your smoke. My son is in northern CA and the pictures are horrendous.
I started walking 3-1/2 to 4 miles every morning when the country shut down in March. I'm still at it - even through all the darn Houston heat & humidity. I've always been a night person. I actually hate mornings, but if I don't set my clock, pop out of bed, tie on my shoes and go - I would find a hundred excuses for putting it off - with the heat at the top of the list. Today was day # 165. I've missed three or four days with doc appointments. Those days are not counted in that number but I do force myself to do 6+ miles the days before & after to make up. As a bonus I've lost 12 lbs and my LDL Cholesterol number has dropped 25 points.
I don't have veggies, but I've been in the yard a lot also. I've been individually hand pulling the Johnson Grass that's invaded my lawn. UGH. And I'm growing more plumarias again. People keep bringing me 'branches', but unfortunately none are ever red. I'd weaned down to four plants but I'm back up to 12 - white, gold & pink in many variations.
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Minus. Your like me. If I don’t get my exercise over and with then it nags me till I do it.
Sounds fab what your doing and the plumerias are very rewarding with that heavenly scent.Once smoke goes and I fix my toe problem which I’m working on then I need to walk longer and more. I miss walking 5 days a week!
Hate grass weeds. I swear enemies drop it into my lawn at 3 am. There is no other way it can get there. But I don’t have enemies that I know of! Ha Keep moving. Hula hooping tonight in front of tv.
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I posted this on the LBA surgery thread as well. I am contemplating surgery, but it is not available where I live, and none of the specialists I see for cancer or lymphedema see to know much about it. I have been using an arm pump for a few months and it seems to help. Recently an arm/chest/abdomen pump was suggested as being more like a lymphedema massage. Does anyone have exerience with both/either. Thoughts? I was doing self massage prior to the pump, and should probably resume that. Self massage also helped. Is LVA surgery a better option? Looking for a tape measure that my very clumsy left hand could use to measure the right arm, having trouble finding one that I think I cold use.
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COVID 19 and LE...> PREFER PMS - not on board much
Received MODERNA on FEB 3 in Right thigh. On DAY 8 I go what my DRS call ' covid arm ' typically appears Day 8 ( on thigh) transient in those who have no LE issues, Swelling at the injection site has finally resolved, BUT pocket of swelling BEHIND thigh. I finally measured and R thigh one inch bigger than left thigh , but never PRE measured so who knows ?
Docs say give over Right (same) thigh again March 3rd , BECAUSE left leg is impaired ( Bad hip, bad knee and bad ankle) - UGH_
What to do what to do.
MODERNA impacts the nodes! Who knew?
I DON' T THINK Pfizer does ( sigh)0 -
Thanks for the heads up, purple! I just Googled this, and found a decent article from Mass Gen.
Stay safe out there!
Anne
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PiperKay
Thank you for posting...the more I search the more articles there are saying this is MOSTLY true of MODERNA.
I already gave them 1 leg and got the " covid arm and not sure if I should give the same (R.) leg this WED ( UGH) Drs say go ahead, because my left leg has joint issues etc ,, but this seems like Id be asking for trouble to give the same leg again.
I dunno'.
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PiperKay
THX for posting this- STILL not sure which leg to give this WED ( 3/3)
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Purple - fingers crossed for you. What a heavy decision to have to make.
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Thanks very much, MinusTwo - I appreciate your support/concern.
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I've read more and more about this issue of enlarged lymph nodes associated with the vaccines. Now they're recommending significant time between a vaccine and any cancer-detecting imagery like mammogram because the enlarged nodes look so similar to a potential malignancy.
But that is a separate concern from ours: how to avoid waking the LE beast with a needle stick? So what was your final decision, purple, and how has it been going? I'm not scheduled for a shot yet, but want to be prepared when I am.
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Posting this several places. It has been extremely frustrating to get signed up for covid vaccine, but I finally did. FIrst dose tommorow, took what ever was available, even if not close to me. Have letter from DR requesting they use thigh. But what do I do if they say NO. Maybe I am not surprised that this issue has not already come up and providers informed.
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BlueGirl - it's unlikely they will use your thigh if you are going to an automobile drive through location. Also unlikely if you're going to a WalMart, CVS, etc. I bugged everyone all the way along the line moving to the next supervisor until they found a nurse that said sure. Good luck. Please come back & let us know.
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Calld 4 pharmacies, none willing to administer in thigh. Maybe a clinic/hospital would. But it was so hard to get an appt. I grabbed the first one I could. Pfeizer , a little bruising in arm.
Some posted a video on one of the lymhedema threads. Clinic/DR in San Fransisco, I think. I bookmarked it, but cannot find it. Looking for treatment/expertise that does not seem to be available where I am.
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BlueGIrl - glad you have just a little bruising.
I don't think it's you. I've spent 6 years finding a place that would give shots in my thigh. For my first Shingles shot, I drove across town & literally paid an "arm & a leg" to use my hip/butt at a private clinic. And I spent 5 years finding a place that will draw blood from my ankle instead of my arm every 6 months. You'd think with the "largest" Medical Center" in the country, it wouldn't be that difficult. Even three of the big hospitals wouldn't do it. I landed at the "transplant center" at the 4th hospital only because the wonderful doc in charge agreed to do it, but he's approaching retirement age. Sigh.
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I wonder why it is such an issue, and what it would take to get things changed. Do some vaccines just not work if administered elsewhere? I do remember getting some vaccines that were only given in glutes. I once fought with one imaging center about using the arm not affected with lymphedema - 3 or 4 techs with 3 or 4 pokes each could not get an IV in the affected arm. They refused to use the non-swollen arm or call my DR. FInally used an ultrasound guided IV. I will not go back to that center. Another one has had no problem using the unaffected arm. Lymph nodes removed twice on left with cancer on that side aswell as radiation, but left arm so far is fine. New cancer in R-axilla that has metastasized and spreading through lymph, leaving R arm very swollen.
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BlueGIrl - I'm so sorry about the R-axilla cancer and your progression.
A shot in the muscle is a shot in the muscle. I understand that little kids are getting their regular shots in their thighs now instead of arms.
When I was in Pre-Op for ALND surgery, the anesthesia group couldn't get a line started in my ankle. They finally had to call the head OR nurse to do it. At one point I had a PCP who said she would look into getting one of her nurses trained. Never happened. With our "sue happy" culture, very few people are willing to try something outside of their educational training or comfort zone.
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