COVID 19 VAX with BILATERAL LYMPHEDMA

purple32

UGH
A new challenge!

Thoughts ?

MinusTwo

Purple - I plan to get the shot in my hip/butt like I do all other vaccines.

Trishyla

Great plan, MinusTwo. I'm at risk in both arms and I struggle with shots, blood draws and BP readings. I was doing foot draws for bloodwork, but developed mild lymphedema in my legs, possibly due to DIEP flap. After that I just started using my "less at risk" right arm.

purple32

But HOW Minus Two?

in MA they are giving them at CVS Walgreens and the like- NOT DRS and NURSES and they always refuse . They are allowed ONLY in the arm/ deltoid. PCPs dont have them due to freezing requirements etc

MinusTwo

Yup - I've had trouble with CVS & Walgreens too. Costo pharmacy used to give injections other than arms, but I think they have stopped the practice. I found that a Kroger grocery store pharmacy close to me actually has a small sliding cubicle and they WILL give shots in the butt or hip. But I don't know if they will have Covid shots.

Also I did get a message from the hospital system where most of my docs practice. The message basically said - we know you're there & we'll call as soon as your number comes up. That leads me to believe that my PCP right across the street from the hospital might be making arrangements for her patients.

ShetlandPony

Purple, I would ask one of your doctors or nurses to help you arrange to get your vaccination where they can accommodate your need to spare your arms. Maybe you will have to go to a large hospital for it.

purple32

The hospitals near me are givin g it only to their staff front line workers.

HersheyKiss

Purple, many doctor's offices will receive the Moderna vaccine. It doesn't require the subzero temperatures that Pfizer's vaccine needs.

My doctor must be getting bombarded with patient questions about being vaccinated. She sent an email blast last weekend to her patients. We will be contacted to make an appointment once it is "our turn."

Spookiesmom

I get flu shots, do blood draws, and BP on my “not as bad” LE arm. Haven’t had any problems.

MinusTwo

Purple - that seems to be the protocol everywhere for now. Front line medical workers only.

Herseys - yup I got the same kind of message. We know you're there. WE know you're anxious. We will contact you when your turn comes up.

I agree about the Moderna. It only needs a standard freezer so i figure that's our best chance. Still I don't expect my number to come up until March or April - in spite of my age and prior cancer treatments.

purple32

I hope so! I have aterrible PCP- not even a patient portal! THANKS!

BlueGirlRedState

Which arm........ Talk to provider ahead of time to avoid problems. Sentinal nodes removed twice, each time 2 nodes on LEFT side in 2009, and in 2016 with BC on left. 2016 bi-lateral, my choice. 2019 Lymphedema on Right side with a new tumor in the Right axilla. Most providers willing to use left arm when I request. Once for a CT, provider refused since left side had nodes removed. Even when I showed them the lymphedema on the Right and requested they call my oncologist. They refused. 3 technicians with 3-4 pokes each could not get IV. So ordered an ultrasound guided IV, IV went in easily. Just had a colonoscopy, they almost refused to use left for BP, IV etc. But nurse looked at R-arm and agreed it was swollen, left was not, and used the left side.

purple32

BOTH arms.... bilateral

BlueGirlRedState

Purple32 - sorry it is bilateral and that neither arm is a good option. You might have different options for different needs, and should talk to a health provider. You might be able to get different vaccines in hip/rump/leg/abdomen. You might have option for using leg/ankle for BP (for a recent colonoscopy nurse did this for me, one arm had an IV and he did not want to use the lymphedema arm). IVs are likey to be different. I asked if a foot could be use for IV contrast for CT and was told they did not want to do that, that it would not work as well as arm.

MinusTwo

I always have BP on the calf or ankle now. And for surgeries, I've had IVs for anesthesia started in my ankle by the head surgery nurse after anesthesia tech couldn't get it done.

I'm told that kids normally get their vaccinations in the top of their thigh now. But I had a hard time finding anyone who would do blood draws from my ankle for regular 6 month blood tests. Finally getting it done at the transplant/blood transfusion center at the hospital.

purple32

Minus Two

Pls see private message

Ladies

PLS go with PZIFER if given the choice. ( Google covid arm and Moderna)

MinusTwo

Purple - hard choices. I did respond to your PM. Please let us know what you decide about location and how it goes. My second shot will be tomorrow - depending on the weather & the power & etc.

purple32

Minus Two

How did it go with 2nd shot ?

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)

purple32

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)

BlueGirlRedState

For those who got it in the thigh did you need a DR order? DR agrees that I should avoid the arm, since very bad LE in one arm. I probably cannot get vaccine until May, MBC is not listed here as a reason to prioritize place in line.

MinusTwo

I got my 2nd shot one week ago today. No - I did not need a doctor order for the thigh. I just said "post mastectomy lymphadema protocol (complications)". That said - I was having my shots at a hospital location so they were able to call over a nurse who was familiar with thigh shots. It likely wouldn't work at the large drive through locations. I wore a skirt with a pair of shorts underneath.

Finding someplace to give shots in my butt or thigh has been a hassle for several years. Obviously the local WalMart or CVS doesn't want you to "drop trou" in their stores. I finally found a Kroger that has a small area behind a sliding door at the pharmacy, and have had flu shots, tetanus shots, shingles shots there for the last couple of years. Thank heavens because even my PCP doesn't do shots - or thigh shots.

As for side effects - I was extremely tired for two days. But not as bad as after 5 weeks or rads. The injection site was only tender with shot #1. This time it was actually sore. But after the first shot I walked 7 miles since they said to use the muscles, and this time I didn't exercise the muscles. From the 2nd day I had some muscle aches for a couple of days. Nothing horrible but not normal for me, & I knew they were there. And I have a cold sore on my lip. I don't have any idea if a cold sore is related, but I haven't had one a long time, so thought I'd mention it.

purple32

Minus Two RE : "Finding someplace to give shots in my butt...."

Just an FYI _ I read online NOT to get MODERNA ( specifically) in the butt - flu shots okay.

Glad you had your 2nd shot and seem to be none the worse for the wear' Minus Two.

Still trying to decide if I should get my 2nd ( MODERNA) in my bad leg ( bad hip, knee etc ) or try again on the R leg which swelled. I measured the legs and the R leg (THIGH) is one inch bigger but I cant swear it wasnt before. Just feeling like that R leg will be sure to swell again yet the left leg has ' other issues' UGH- what to do what to do.

Damn Covid!

Damn Cancer !

Damn LE!

purple32

DONT go with Moderna if you get the choice PLUS it s all over the news now it is getting ' false mamos' due to enlarged L nodes- sure wish I had known.

MinusTwo

Actually the pharmacist who has been giving me all kinds of shots in my hip for several years did some research and switched to thigh last year. He said there's less chance to hit a sciatic nerve.

Sorry for your dilemma Purple. Let us know what you decide.

Beaverntx

The swollen lymph nodes have been found with both Pfizer and Moderna vaccines as a normal immune response. In connection with mammograms, the advice is to have the mammo before starting the vaccine or wait a month after the second vaccine to avoid having a false positive reading.

purple32

Beaverntx

NO, if you investigate further, the MODERNA has more of an impact on the nodes and can cause " COVID ARM" ... just google it.

I'm sure if there was NO lymphedema OR propensity for it that would be transient. All of the articles say 24-48 hrs. It has impacted my thigh for app 4 weeks- NOT 48 hrs like the NON-LE people. Mine is a friendly word of caution because I know that IF I had to do it all over again, I would go where PFIZER was given, My thigh is now one full inch bigger than the other. This is NOT what thye mena by a normal response 4 weeks later.

I'm sounding a horn for those who want to hear it. It pays to be cautious ..we are very early in this vaccine game,.

CHECK THIS OUT : https://www.health.com/condition/infectious-diseases/coronavirus/covid-arm-rash-moderna

Probably not that big a deal if you can hand off the other arm ( or in my case the LEG) but my L leg is bad and may need knee replacement. I don't want to risk LE and NONE of the info they know about has so far reported on pts with existing LE. Get the darn PFIZER!

mutt1963

I got the Pfizer #1 yesterday. I get most of my flu, pneumonia, and other vaccines in my hip. Yesterday the pharmacist that were running the vaccination site wanted it in my leg. It's mildly sore at injection site. I had a mild headache for an hour, chills later, now nodes in my armpits feel a little swollen. I usually have painful truncal lymphedema so the swelling maybe attributed to my normal ebb and flow, I will try to keep you guys informed as to how my body is handling it

purple32

so I called m o d e r n a today after looking up on their website. What a nasty little defensive man I ended up speaking to! He told me that I had gotten an experimental vaccine that all agents who administered the vaccine were notified in December of 2020 that this impacted the lymph nodes and that they should not give it to people who had problems with their lymph nodes or who has lymph nodes removed. I found this incredibly hard to believe. I called the Mercy hospital where I had my vaccine and I asked them if this was true and they said they never had any time had that knowledge in December of 2020 or they would have just given me the Pfizer since they have both vaccines which was true. I am on a mission to warn everybody about this place and but don't believe me and don't take my word for it call them for yourself and just ask them. I'm sorry I don't have their number off hand it's pretty easy to look them up with a Google and get their telephone number. Good luck to everybody

BlueGirlRedState

purple - it is very frustrating with the covid vax. Hard to sign up and get appt, so I grabbed the first one I could. 4 pharmacies were unable/unwilling to use thigh as alternate site, said they were not trained for that. Had the pfeizer shot in the "good" arm (actually not good, because lymph nodes removed in 2009, 2016), but the other arm is so swollen with lymph, itis not an option . I do not know if I had waited for a clinic to have an opening if it would have any good. probably need a nurse, not a tech for vax anywhere else. I even had notes from 2 DRs, and printouts from Pfeizer and Moderna - they have a very tiny footnote in their guidelines that the thigh can be used. So how to get the word out and make this option available? I emailed a local reporter who had been reporting about all the unused appts in our area, and described my dilemma, hoping she will get that into one of her stories. Also contacted local health district,but have not heard back.

purple32

BlueGirlRed

TY! Glad you got the PFIZER..I started another thread.

I THINK the Moderna has left me with LE in both legs ( and I have it in both arms)

purple32

mutt1963

My best guess is the inguinal nodes in your legs might have swelled...not nodes in your aerms so hoping this is coincedence for you.