Topic: COVID 19 VAX with BILATERAL LYMPHEDMA

Forum: All things COVID-19 or coronavirus — A place to discuss the impact of COVID-19 (Coronavirus) on you and the ones you love.

Posted on: Dec 22, 2020 12:15PM

Posted on: Dec 22, 2020 12:15PM

purple32 wrote:

UGH
A new challenge!

Thoughts ?

BILAT LE! from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- RECURRENCE same breast Jan 2020 LX FEB 2020 . NO rads or hormones. Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy; Lumpectomy (Left)
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Dec 23, 2020 12:18PM BlueGirlRedState wrote:

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.

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Dec 23, 2020 01:38PM purple32 wrote:

BOTH arms.... bilateral

BILAT LE! from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- RECURRENCE same breast Jan 2020 LX FEB 2020 . NO rads or hormones. Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy; Lumpectomy (Left)
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Dec 24, 2020 12:25PM BlueGirlRedState wrote:

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.

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Dec 24, 2020 09:12PM minustwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 18, 2021 06:51PM purple32 wrote:

Minus Two

Pls see private message


Ladies

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

BILAT LE! from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- RECURRENCE same breast Jan 2020 LX FEB 2020 . NO rads or hormones. Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy; Lumpectomy (Left)
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Feb 18, 2021 11:30PM minustwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 26, 2021 07:32AM purple32 wrote:

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)

BILAT LE! from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- RECURRENCE same breast Jan 2020 LX FEB 2020 . NO rads or hormones. Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy; Lumpectomy (Left)
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Feb 26, 2021 07:34AM purple32 wrote:

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)

BILAT LE! from 5.12.12.LX DX 3/2012 IDC <1 cm stage 1 GR 1 ( 0/2 nodes) ER PR pos HER2- RECURRENCE same breast Jan 2020 LX FEB 2020 . NO rads or hormones. Dx 3/2012, IDC, Left, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy; Lumpectomy (Left)
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Feb 26, 2021 07:45PM BlueGirlRedState wrote:

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.

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Feb 26, 2021 10:01PM minustwo wrote:

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.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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