Lymphedema and the covid vaccine
Hi Folks
On 2/3 and 3.3.2021 I got a Moderna injection in each in the thigh ( Nodes removed from left arm caused LE 9 yrs ago) AND app 4 1/2 yrs ago I offered my R arm for a blood draw and got LE . ( my LE therapist explained that I already had an impaired lymphatic system and that R arm had just recovered from ' an insult ' as I had broken the humerus in 3 places ( sigh)
So all flu shots in thighs were essentially without incident ( large mosquito bite look at the injection site which went away within a week.
Now, I am having TROUBLES!
Legs both got what a Massgeneral Boston DR called COVID ARM ( google images) in thighs and she reassured me it would go away. IT did, but lower legs/ whole leg began to have edema and still does. DRs here in Spfld said CVI or PVD. I went to Boston and they say NO! They said it is "possibly LE and MAYBE brought on by Moderna" ( UGH)
in any case, DR suggested I offer the Right arm next time. Folks, it has LE.
(What would you do ?>)
I also wanted a PFIZER for my next shot as you can probably see why, but the hospital where I got this shot ( which was ok with that! ) will no longer be offering since there are so many ' public sites' now. UGH and UGH.
Any familiar stories and any advice so appreciated,.
Please avoid Moderna if you have had nodes removed... DISCLAIMER : JMO!
Laurie.
Comments
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Oh, no! I hope the edema in your legs isn't permanent. Have you tried putting your legs up against the wall?
I've had the first dose of Moderna in my thigh. I did get swelling and redness at the injection site, but it's mostly gone. I have mild LE in my left arm. I use my right arm for blood draws and Xgeva shots. I already had a rash when I got the shot, but it spread and is still a little itchy. I've reported my reaction, but I'm not certain about dose 2. I will get it, but I want to talk to my MO next week. I need to time the dose during my off week of Ibrance. Vaccine protocol doesn't call for a different vaccine or skipping dose 2.
I'm prone to rashes, but Moderna is what my specialty pharmacy had. I may get the shot in my other thigh during my off week and take Benadryl as a pre-med like when I had Taxol. I'll also avoid gluten since that seems to trigger rashes for me.
I agree that I would rather get Pfizer.
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RE: ' Have you tried putting your legs up against the wall? '
Oh, trust me...Ive tried EVERYTHING! And I wear compression and elevate all night etc etc .. NEVER had edema in the legs prior to FEB. 2021. Maybe my issue is unique because I had the bilateral LE in both arms... I dunno'.
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Does MLD make any difference even short term?
I have a sleeve from this company that broke up fibrotic tissue from cellulitis. It's like getting a massage every time you move.
https://mobiderm.com.au/collections/mobiderm-autofit-garment/night-time
Think I'll email my LE therapist for her thoughts on my next shot.
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SerenitySTA I didn't know... my LE therapist was of no help!
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Hi Purple Flower,
I hope you are doing better. My situation is a bit different, I started having lymphedema in my torso and left arm last winter. I've had lymphedema in my right arm since my bilateral mastectomy. I was able to get Pfizer vaccine after I started getting my lymphedema under control again. Maybe the information below will you.
I found a some helpful YouTube videos created by Lymphatic Education and Research Network (LEARN). I have had to change my diet significantly to reduce overall inflammation which in my case made my lymphedema worse. Our food supply has been changed by commercialization to the point that some foods, we think of as antiinflammatory may be inflammatory if we are not careful. There is a video that explains. Also if you can, talk to your lymphedema therapist about a lymphatic pump like the Flexitouch Plus or a Jovipak night time garment. These have helped me get my lymphedema back under control.
I never wanted a pump and rejected it when I went back a lymphedema therapist. Then I saw a video explaining how CDT treatment is based on the European health care system and how it differs from US health care system. Then I paid attention to how my appointments went from 1 hour a few years ago to 45 mins a sometime before pandemic. During a 45 minute appointment, I was only getting about 15 to 20 minutes of massage and seeing no improvement. All this to say, I had to reevaluate how I was going to deal with this chronic condition the rest of my life and modify my behavior by being more diligent.
All this makes life challenging, but there are still rewards in life. Good luck.
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Hello SBert99
Having LE in ALL 4 quadrants means NO place to draw blood, do BP, IVs operate ...etc ... Having 1 access point is EVERYTHING!
I am GUESSING a LE therapist would say the legs are ' under control' - I wear compression daily.
I'd be concerned about garment for the legs that could potentially draw fluid back to the arms since I have it ' everywhere'; and would FLEXITOUCH get it " under control' to where I didn't need compression or could get injections or BP in the leg? Nope . I don't think so and therefore I am probably not going to go there ( yet ?)
I have many, many, many, health conditions I'd rather not list as I do not want to sound like a whiner- suffice it to say, I'm currently not feeling the rewards in life.
TY for your post!
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Purple32. I really do feel for you. I hope you can start seeing some reduction in lymphedema due to Moderna vaccine. Can your oncologist request imagining study to see if the lymphatic system shows damage? Also if your lymphedema is like mine, pain increases with volume. Make sure to talk to your doctor about everything.
Take care of yourself, and ask for help. It took me months to get it back under some level of control.
PS- don't worry about whinning now and again. We are human after all. Good luck.
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SBert9
Thanks
RE: " Can your oncologist request imagining study to see if the lymphatic system shows damage? "
Ive never heard of such a thing actually, but IF my onc doc did this0 how would that help ? Not so sure I understand ( ?)
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Purple32,
My doctor was looking for damage to lymphnodes. We didn't find any so we never went to the next step. But I believe she would have referred me to a surgeon that does microsurgery to reroute lymph vessels. There may be more about it under lymphedema. My mother sent me an article about it in a Mayo clinic newsletter years ago. I'm in the Seattle area and there's a surgeon here. I expect most large cancer hospitals may have a surgeon performing this procedure.
All that may not be helpful. In my case I accidentally noticed my stomach appeared swollen and a good friend reminded about my food sensitivities. I put 2 and 2 together. Removed wheat, nuts and corn from my diet. It still took 4 to 6 weeks to get my overall inflammation down and then I started seeing improvements in my lymphedema, with the help of the lymphedema therapist, pump and other lymphedema gear. It is a struggle and I'm sorry you are having such a rough time. Please make sure you take care of yourself physically and emotionally. I know I struggled when mine spread.
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Hi everyone, I need info about getting the covid vaccine. I have 17 nodes gone and Lymphedma of left arm. I am scared to take the vaccine because I read it can cause lymphedema. Can anyone tell me their experience with it? Does it make the swelling worse? I am scared to take a vaccine and now we have the covid variant. Scary! I am also scared not to take it. I heard the Pfizer vaccine has the least side effects. Please respond if you can. I would have thought there would be a lot of info on here. I can't find it as of yet. Thank you if you respond. farmlovergrl PS. I do live on a big farm.🙏🙏 for all.
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Hi Farmlovergrl,
I had 11 nodes removed last month during my SNLB with lumpectomy. I do not have lymphedema, but I do know that is a risk.
You are absolutely right that you need robust protection from Covid. As cancer patients, we learn quickly that we have struggling immune systems that begin to struggle even further during treatment.
My oncologists aren't letting me do anything experimental. I am thankful for their combined wisdom. Truly, the last thing I would do during cancer is to sign myself up for an experimental therapy not even out of Phase 2 trials yet without any long term safety studies and thousands of reported deaths and injuries, according to VAERS. I would not touch experimental injections with a 10 foot pole.
Instead, I have been fully protected this past year with zero concerns about any variant, thanks to the Frontline Covid Critical Care Doctors (FLCCC.net) and their very specific published protocols for Covid prophylaxis and treatment with astonishingly effective early treatment (iMask and iMath). Their protocol includes medications long proven safe and effective: IVM, Vitamin D, C, Zinc and Melatonin. Their patients, when treated early, do not have any problems from exposure to the virus. I take 12mg of IVM every week per my doctor's prescription. It's interesting that several of these medications are already helpful for certain cancer patients, so the unusual timing has been a double blessing for me. Here is the website: https://covid19criticalcare.com/covid-19-protocols...
If you're interested, the FLCCC has a weekly Wednesday Q&A webinar with their international teams of doctors answering questions about the protocol and how amazingly successful it has been to protect us from Covid. Their website is FLCCC.net.REUTERS article below.
Blessings,Esther
CSN
cancer.org
Solid tumors, mRNA, and two of the COVID vaccines
Tamlen
Posts: 304
Joined: Jan 2018Dec 10, 2020 - 11:53 am Reuters published this today:
mRNA Vaccines May Need More Study for Treating Some Cancer Patients
COVID-19 vaccines that employ new messenger RNA (mRNA) technology to fend off the illness may require further testing before it becomes clear they are safe for cancer patients with solid tumors, cancer treatment experts say. That would include the vaccines from Pfizer Inc with partner BioNTech SE and from Moderna Inc. The vaccines work by carrying genetic instructions for making a protein from the virus that the immune system learns to recognize and defend against. The mRNA is encased in a microscopic "packet" called a lipid nanoparticle (LNP), or liposome, that protects and delivers the fragile molecule into cells. While this technique is new for vaccines, it has long been used to carry cancer drugs into tumors, because tumors easily take up liposomes. This raises the possibility that tumor tissues would capture some of the liposomes carrying the vaccine's mRNA, said Gerard Milano of Nice University in France. The potential for part of the vaccine to become stuck in tumors and the resulting effect on cancer patients "is an open question to which there is currently no answer," Milano said. In a paper published on Wednesday in the British Journal of Cancer, his team calls for "a careful evaluation of the efficacy of these promising mRNA COVID-19 vaccines administered as lipid carriers for patients with solid tumors, including a possible re-appraisal of the dosing for optimal protection of this specific and frail population."
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Farmlovergrl - Maybe the reason you haven't found many posts is that there haven't been many problems with LE? I have LE in my left arm, and it wasn't affected by the Moderna vaccine. I did get a rash, but even the rash didn't affect my LE arm. I recommend getting the injection in your thigh, if possible. Not all vaccinators are trained, but you can ask.
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Farmmlovergirl
You may want to look into Esther01 post. Seems like a daunting process, but ...
In any case, I would get the shot ( NOT Moderna! ) in the opposite arm OR one thigh .
Best Wises to you.
BREATHE!
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farmmlovergirl,
I had 15 nodes removed from my left side. Got the Pfizer vaccine in my right arm and it had absolutely no effect on my lymph nodes nor any other unwanted se's. That was back in early March. Perhaps you have not seen posts about this because it has not been an issue. Although you can take personal steps to avoid Covid19 there is no proven “natural “ preventative regimen. The virus has been rather indiscriminate so please, for yourself, your family and community, get vaccinated!
I will also add that the vaccine is not experimental. It is true that it is being used under emergency use authorization, but that is not the same thing as experimental. Despite what a previous poster stated, the vast majority of oncologists are recommending the vaccines for cancer patients of appropriate. mRNA technology is not new. It was simply tweaked so it would be effective against Covid19. Science is not perfect and there are never any guarantees in life but don’t let fear of LE stop you from protecting yourself and those around you. Take care
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. Perhaps you have not seen posts about this because it has not been an issue.
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I wouldn't be so sure! When I called MODERNA they said it was not uncommon and I should have known the risk! (It was no known to the public then! ) Sooooooo perhaps it is because you had the PFIZER.
In any case, I agree 100% with the rest of yoiur posty - I'd say get the pfizer in your opposite arm. Best Wishes to all!
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Hi purple32,
Well, I'm not going to argue with what you were told, but on bco it has not been something that members have commonly encountered. It is known that some who have been vaccinated do experience temporary lymph node swelling but that is not the same as triggering LE. I'm glad that you're encouraging vaccination as the stats on those currently hospitalized and dying show that they are almost all unvaccinated.
BTW, my user name is not Ravelry!
exbrnxgrl
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I would choose Pfizer as well. My physician-mother chose Moderna over Pfizer. Best is whatever you can get first. My cancer centre is at a research hospital and offered the mRNA vaccine to their patients.
I do take vitamin D and melatonin. I read about ivermectin. There's no clinical evidence it works for COVID. A paper on it was retracted recently for bad data/methodology.
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I have LE in both arms. Got both Phizer jabs in the least affected arm. No problem.
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Hi Farmgrl,
I agree with Serenity about seeing a preprint study retracted by some doctor in Egypt. I was referring to over 60 studies demonstrating the efficacy of IVM for SarsCov2. Here they are: https://ivmmeta.com/. FLCCC frontline doctors are the ones treating Covid patients for the past year. They know what works and what doesn't. They are not anti-vaccine, just early prevention with what works.
As for your lymphedema, I remember a thread here discussing side effects from the injections, but cannot recall if any were lymphedema-related. As a kind poster mentioned earlier, please don't let lymphedema concerns stop you and your loved ones from being protected. Whether you choose to get the injections or to prophylact weekly with ivermectin as prescribed by your doctor, I would move forward as soon as possible so you will be protected as soon as possible. Once you have that behind you, you will be able to breathe deeply and heal. Your farm sounds lovely!
Blessings,
Esther
Ivermectin for COVID-19: real-time meta analysis of 60 studies
•Meta analysis using the most serious outcome reported shows 74% and 85% improvement for early treatment and prophylaxis (RR 0.26 [0.16-0.43] and 0.15 [0.08-0.25]), with similar results after exclusion based sensitivity analysis, restriction to peer-reviewed studies, and restriction to Randomized Controlled Trials.•64% and 96% lower mortality is observed for early treatment and prophylaxis (RR 0.36 [0.15-0.85] and 0.04 [0.00-0.59]). Statistically significant improvements are seen for mortality, hospitalization, cases, and viral clearance. 26 studies show statistically significant improvements in isolation.
Studies Prophylaxis Early treatment Late treatment Patients Authors All studies 60 85% [75‑92%] 74% [57‑84%] 43% [26‑56%] 21,838 574 With exclusions 50 88% [75‑94%] 76% [66‑83%] 50% [28‑65%] 17,437 513 Peer-reviewed 39 88% [70‑95%] 75% [59‑84%] 43% [21‑59%] 11,593 408 Randomized Controlled Trials 30 84% [25‑96%] 67% [54‑76%] 30% [2‑50%] 5,206 358 Mortality results 23 96% [41‑100%] 64% [15‑85%] 59% [35‑74%] 10,797 236 Percentage improvement with ivermectin treatment 0 -
I have truncal lymphedema and was able to get both Moderna shots with no issues whatsoever. My husband, who has a great immune system, had one day of fever, chills and body aches. After that he was fine.
I highly encourage everyone to get the vaccine, unless told not to by your doctor. Not because of weird stuff you read on the internet, but because a medical professional who knows your history told you not to get it.
It was the craziest thing, but once I had that second shot, it was as if a weight had dropped off my shoulders. I felt so safe. Not afraid. Not worried. Safe.
Trish
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Trishyla,
I had my first vaccine almost as soon as my county opened it up to teachers. The online appointment site was overwhelmed at the time. My colleagues and I were texting back and forth as we helped each other make appointments. When I finally got in, I felt as if I had won the lottery!
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Not for me either, serenity! This is an opinion piece, but I have great respect for the author and his medical expertise. Again, science and scientific research are not perfect and not always right but, as far as Covid19 goes (and most research for that matter) vaccines are our best shot at ending this pandemic. Hydroxychloroquine has not proved useful, oleandrin from the highly, highly toxic oleander plant was thankfully given little credence and it seems that Ivermectin may go the same way.
https://respectfulinsolence.com/2021/06/28/ivermectin-is-the-new-hydroxychloroquine-for-covid-19/
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Sorry I need to address this. Why would a drug used to prevent heartworm in dogs be used to prevent/treat Covid? This is right up there with drinking bleach, taking hydroxychloroquine and other toxic drugs. We have vaccines which have proven to be effective and they are available for free. I cannot understand why anyone would be reluctant to take the vaccine but would participate in a crap shoot over unproven and dangerous (possibly lethal) alternatives.
I had two Pfizer doses, did not have any issue with my truncal lymphedema and was lucky to experience no side effects. In fact my arm after the Shingrix vaccine was the most painful I have ever experienced.
edited for poor typing
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betrayal,
Though I hate to take away hope, I must agree with you which is why I posted the link to respectful insolence. Orac does a good job of explaining why Ivermectin is not a legit COVID preventative. Please note that he is very opposed to much of what is considered alternative medicine, i.e. cures or treatments without solid scientific, data driven research. Although I would like to believe that there are easy, natural, no harm solutions to medical problems, I am too pragmatic and too much of an academic to accept poorly conducted “research” or personal anecdotes as evidence of efficacy.
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I've had lymphedema in both arms but it is well controlled at this point. I had Moderna as my first shot, in my thigh & Pfizer as my second, also in my thigh. No problems with any swelling but I was worried about it.
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exbrnxgrl: Agreed but there are others who posted supporting use of these drugs.
Whoever would choose dog heartworm medicine over a proven vaccine makes me wonder what their reasoning is. My dog does well on her ivermectin so it is appropriate there. Having had one dog who developed heartworm when my DFIL failed to give her her meds when they were daily (skipped 2 weeks while we were away), her subsequent treatment (arsenic which either killes them or cures them) cost me thousands but prolonged her life for 2 more years. I just don't get why someone would take risky OTC/prescription drugs when there is a vaccine. Getting it just when you are being admitted to ICU, being prepped for a ventilator or a lung transplant is just too darn late. My DB had Covid pre-vaccine, spent 2 months sleeping upright on his couch so he could breathe and reported that just taking a shower was exhausting. He did recover but it was a long haul and he said he would not wish this on his worst enemy. I am thankful he survived but he developed clots in his legs and lungs and is on an anticoagulant for life which means he can no longer take his meds for RA nor OTC pain meds.
The young man who received the double lung transplant now has a shorter life expectancy than his peers, will be on immunosuppressive drugs for the rest of his life which makes him susceptible to just about every possible infectious disease, these drugs increase his risk of developing cancer, he may not be able to receive some vaccines, etc. I do feel sorry for him though.
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Great they let you get the two different MRNAs. GG27
Glad it was without impact for you!
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purple,
It was GG27 who received the two different vaccines. I just had two plain old Pfizer’s 😊
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Hello exbrnxgrl
NO argument here.
I am merely sounding a bell to all who have had BC as a warming specifically about Moderna and my case and what MODERNA told me when I called them,
I had been wearing a knee sleeve on my left knee for app 5 yrs and had it on the day I got the first shot in my RIGHT thigh. Got flu shots without incident on thighs for several years. Once I noticed the swelling in the R leg I was surprised my left leg also seemed to be affected because my L knee brace felt tight ( many days later) I thought for certain this would all go away and resolve quickly.
First shot was FEB 2021. This is JULY 24 2021. That shot triggered LE and in both legs. ( and I did end up having it in BOTH btw) Anyway, It did- period. I am only here to warn. I am happy for those who it did not impact, believe me. If someone had made a post such as mine before I got my shot I would have been grateful - and would have opted for PFIZER. I am not anti vax, but pro vax.
If this helps one person, my posts are worth typing.
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