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 09:15AM

Posted on: Dec 22, 2020 09:15AM

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 4/30/2012 Lumpectomy; Lumpectomy (Left)
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May 14, 2021 07:02AM purple32 wrote:

Beaverntx

but 'COVID ARM' ( google images) is unique ONLY to MODERNA and did not go away in my case. I THINK and DRS think I may now ALSO have LE in legs. I am sounding a trumpet for ppl to get PFIZER if at all possible. HTH

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 4/30/2012 Lumpectomy; Lumpectomy (Left)
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May 14, 2021 05:02PM LeapFrog39 wrote:

I got mine in the thigh. recieved the second shot yesterday. The nurse told me they wouldn't give them in the hip because of issues with it aggravating the sciatic nerve.

~ Wandalynn ~ ********** Diagnosed 3/13/2009 from FNA, 39 years old. BMX with full axillary dissection on right side.Final pathology report: 4cm+ high grade DCIS tumor with micro-invasive idc, 2/32 lymph nodes. ER/PR-, Her2+++, Stage IIa Surgery 4/14/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 5/4/2009 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 6/30/2009 Herceptin (trastuzumab) Chemotherapy 6/30/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 2/28/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/9/2012 Reconstruction (left); Reconstruction (right)
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May 15, 2021 03:35PM BlueGirlRedState wrote:

purple - sorry to hear about lymphedema in leg attributed to vaccine. Lymphedema really sucks. One person posted about a terrible reaction she had to the JJ, reaction attibuted to existing MS. It is so discouraging that so little progess has been made for really treating and even curing lymphedema. Some able to manage/control it, others not. Hope things get better for you.

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May 16, 2021 08:59AM buttonsmachine wrote:

I have not been vaccinated yet. I have not had the option until recently because I am young-ish and despite having MBC I was not in the priority groups. However, now I am hesitant because I'd like to find someone who can vaccinate my lower extremities instead.

I was fortunate enough to be warned about lymphadenopathy by my lymphedema therapist. She advised that I should be vaccinated, but that I should be vaccinated in the thigh or hip area because BOTH my upper extremities are so compromised at this point due ongoing LE issues aggravated by MBC.

By the way, BOTH the Pfizer and Moderna vaccines can cause lymphadenopathy, which is the medical term for the condition that is of concern to us with our impaired lymphatic systems. (I think J&J can too, although I personally have not looked into it as much because my MO told me to avoid that one.)

Thanks for starting this thread and I'm sorry for those of you who are suffering with the effects of the Covid vaccine on our already compromised lymphatic systems.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole breast Hormonal Therapy 3/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/14/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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May 16, 2021 01:10PM - edited Aug 6, 2021 12:38PM by purple32

buttonsmachine

Thanks for your reply: RE: " By the way, BOTH the Pfizer and Moderna vaccines can cause lymphadenopathy.." YES, but ONLY MODERNA is known for the " covid arm' which is when the swelling came.

I am only trying to sound a bell - IF I could choose I PERSONALLY would go with Pfizer. JMO.

Good luck and Best Wishes to all!

Laurie

PS in my own case, I am not talking about lymphadenopathy, I believe I now have bonafide lymphedema in both legs (and arms) . Not sure whoch linb to give for the booosters!

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 4/30/2012 Lumpectomy; Lumpectomy (Left)
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May 16, 2021 06:43PM BlueGirlRedState wrote:

buttons - check with a "doc in the box" clinic or hospital clinic for getting vaccine in lower extremity. None of the pharmacies where I am were willing to. One "doc in the box" clinic was willing to, but I would have had to wait another month or two. I even had notes from 2 doctors requesting lower extremity because of lymphedema. Through casual conversation, it seems like people have had less reaction to Pfeizer than Moderna. Don't know about JJ.

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May 17, 2021 01:27PM - edited May 17, 2021 01:28PM by olma61

I had the second dose of Pfizer on May 11th, three weeks after the first. Two days ago, I noticed my feet and anklesswelling with a red mottled look on the skin. The left side is worse than the right, but both sides are definitely swollen. It looks a little better today, less red, but both feet are noticeably puffy. I have stayed off my feet so far today, it does get worse when I stand for a period of time. I believe lymphatic blockage can be a cause ofswelling like this.

If it was only my left side I'd be worried about heart failure, unrelated to the vax, but the swelling is definitely on both sides. In addition, I just had an echocardiogram at the end of April which showed no issues

I do not have lymphedema, I have not had breast surgery because I am Stage IV deNovo. But I saw this topic and thought I would share this experience.

I see that Eric Clapton had some sort of reaction in his hands and feet as well, after receiving the Astra Zeneca shot. He said it began to subside after about ten days.

Take care and be safe.

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+, IHC Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External Local Metastases 5/29/2019 Radiation therapy: Bone
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May 18, 2021 04:30PM - edited May 18, 2021 04:39PM by buttonsmachine

Olma, thanks for sharing your experience. I hope you feel better soon and that whatever it is resolves soon.

If the red and mottledness continues or worsens you might want to get your platelets checked - some people were having that very rare side effect of low platelets. But as you said it could be lymphatic system related too.

I'm still a bit nervous about getting the vaccine, I have to admit. It's just one more medical procedure to go through, with unknown consequences, and I think I'm just worn out these days. I'm so drained from six months of chemo and four hospitalizations this year. I'm afraid of anything else unexpected happening to me, but I know it's not rational. Just my rant, thanks for listening.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole breast Hormonal Therapy 3/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/14/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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May 19, 2021 11:51AM olma61 wrote:

Thanks for the suggestion, buttonsmachine.

Happy to report, the swelling was down a lot as of yesterday. Still some puffiness and redness but greatly reduced. I’m also feeling pins and needles in my feet. Debating if I should go to urgent care or my primary, just to have it looked at and get an opinion. I do have a recent platelet count in my chart, which looks fine.

I don’t think you are irrational to be a little concerned or reluctant about the vaccine. When we are on these strong medications and have other health factors as a result of cancer treatment, let’s face it, the possible interactions have yet to be discovered. The last thing we need is another side effect or loss of function to deal with.

Take care and be safe.


10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+, IHC Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/29/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/29/2019 External Local Metastases 5/29/2019 Radiation therapy: Bone

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