Covid/Omicron Infection with MDS

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• January 24, 2022 at 4:56 pm #57236
  Will Bennet

  Participant

  Hi all,
  I’m quite concerned that all of the talk of Omicron being less virulent can only go so far with MDS patients. With that said, it’s spreading so fast that I assume a lot of MDS patients here and in general are finding themselves infected.

  Both anecdotally as well as with current data, do you have any sense just how terrified an MDS patient should be of getting infected with Omicron? If you haven’t had it yourself, have you read any studies or talked to your doctors about their experience with other patients getting infected?

  With it being so incredibly contagious, it feels like an MDS patient has little choice but to be stuck indefinitely in a cave again hoping for the wave to recede unless some good information can show that it isn’t THAT dangerous, even for those with MDS. Living in a cave in unsustainable for most so the more information the better to make informed decisions.

  January 29, 2022 at 8:49 pm #57244
  Jack Rynecki

  Participant

  Hi quite concerned,
  i too, as an MDS patient, am concerned. I think the the degree of worry is of course relative.
  I’m on “wait and see” and presently have mild neutropenia. I asked my Dr about travel to FL from NY an he was OK since i have the 3 shots. He recommended staying well masked (which i do with N95 plus a regular blue surgical as added protection).
  Jack

  January 30, 2022 at 10:32 am #57245
  Will Bennet

  Participant

  Hi Jack,
  Thanks for your reply. Has your doctor had much experience with other patients catching covid? There are now plenty of ‘experts’ on all sides that say that virtually everyone is going to meet this virus at some point. Maybe they are excluding those that are going to isolate every time there is an uptick in cases but even that is an imperfect approach.

  Of course, there is the other side of the coin that many people are going to want to take on more risk if the alternative is indefinite amounts of total or partial isolation. The problem I find is how hard it is to really get a grasp on how great the risk is for a vaccinated MDS patient at present. It would be hard to imagine a doctor not advising patients to be careful, but at the same time, the doctor is not there to give you advice on a balanced and happy life. It is critical to know if MDS patients are having dramatically worse outcomes with omicron cases than other older groups so it’d be great to hear others experience.

  If no one here has actually had MDS and covid, it would be great to press your doctors for any experience they have. Especially recent experience in the omicron wave. It may be anectodal, but it might also be all we’ve got.

  January 30, 2022 at 1:24 pm #57246
  Peggy Grubbs

  Participant

  I am 70 yrs old and have MDS, and am blood transfusion dependent. I have stopped all other treatments for the disease. I also have Vasculitis, an autoimmune disease. I had three doses of the Moderna vaccine because I’m immune compromised. I got COVID, most likely Delta, right before Thanksgiving. I went to a family funeral where there was little masking and no social distancing. My first symptom was a fever of 103.5 which took me to the ER. They gave me fluids and tested me for COVID. I received micro-clonal antibodies two days later and was just tired. We have to live our lives, but be careful. I’m thankful I was vaccinated to help mitigate the disease. I am also grateful that I was able to get the antibodies which I credit for keeping me out of the hospital.

  • This reply was modified 2 years, 2 months ago by Peggy Grubbs.
  January 31, 2022 at 9:21 am #57248
  Michael

  Participant

  I am 69 and diagnosed with MDS in June 2016. I’ve been on watch and wait since outset. My lone cytopenia is neutropenia. I run from severe to moderate neutropenia in monthly blood work. I’m vaxxed and boosted but still mask up in gatherings outside of my family or group of close personal friends. Before the omicron uptick I was living my life very close to my post MDS normal. The only real difference is masking up. As my expert MDS doctor recommended “trust the vaccine”.

  I’ve not tested positive for Covid. I am currently in Florida for two months escaping the upstate NY winter.

  Best wishes.

  February 5, 2022 at 4:33 pm #57276
  stacey

  Participant

  Just another opinion for you. I am aged 51, have had 5q- for almost 20 years, I decided to not get any Covid shots, nor did I get Covid at all. My oncologist never advised or encouraged me to get the shots. I also have never had the annual flu shots, and I don’t remember having had the flu since the stomach flu roughly 8 years ago. I am a bit of a homebody in wintertime, have always used hand sanitizer faithfully after leaving a store and then washed my hands as soon as I got home; this was my typical practice LONG before Covid. Since Covid started, I have traveled out of state a couple times, have stayed at a hotel, a condo, rode elevators with strangers, swam in pools and lakes, been at a busy rest stop, been to the movies once, and went out to eat at restaurants maybe 10 times. No one in my family has had Covid, and I haven’t even had a cold since before Covid hit in 2020. I also know of several families where a few members of the family had Covid and the other family members in the same household never even got Covid. Since getting MDS, my general rule of thumb is to be more of a homebody in winter, with online shopping instead of crowded stores, keeping to immediate or smaller family gatherings on holidays. Then I try to take advantage as much as possible to get the fresh air and vitamin D sunshine boost in spring and summer; it is good for the immune system. I tend to spend more time seeing extended relatives in those late spring, summer, and early fall months when there are less germs and double check no one is unwell before visiting. So far, this has worked out for me. Good luck.

  April 13, 2022 at 4:05 pm #57822
  Will Bennet

  Participant

  Thank you for sharing your experiences. It would be quite informative to hear more about MDS patients contracting omicron. It seems impossible to find from googling and many doctors know so few MDS patients that it’s hard to say. Given that covid may never go away and that nearly everyone could end up contracting it, I’m struggling to understand how logical it is to alter life in a serious way in a futile attempt to avoid it given that those alterations can involve taking a lot of the joy out of peoples lives.

  Of course, if people came on here saying that their doc has 10 MDS patient, they all caught omicron, and 9 died, that would be extremely useful (albeit terrible) information. Given omicron’s supposedly reduced severity, however, it also seems possible that many MDS patients will pass it like a cold. It’s just so hard to know given how little specific information I can find.

  All personal experiences as well as recent conversations with your doctors would be greatly appreciated.

  June 25, 2022 at 10:36 am #58350
  californiagirl

  Participant

  Hi Will (not sure what happened to my original post, but if there are multiple posts, I apologize), I currently have COVID having gotten it from a recent bubble family gathering. My daughter and family recently returned from visiting in-laws for the first time and PCR tested twice before we went down to visit. We gathered on Saturday (PCR neg) and she mentioned she had a dry cough due to allergies. By Sunday she tested positive so we all packed up and left. Sunday my throat felt scratchy, Monday throat was scratchy but now with a slight cough (antigen neg), Tuesday coughing more but not a lot (antigen neg), Wednesday coughing a lot (antigen pos). Called my PCP and asked for Paxlovid which she prescribed along with Albuterol (just in case) and a strong cough syrup (which is what I really wanted). She wasn’t really hot on me starting Pax but if I wanted to it would be fine. I never felt like I couldn’t manage the COVID symptoms and she called my case mild. I never had lung issues or any severe symptoms. Thursday I was feeling a bit better, but my coughing had improved but still feeling lousy. He suggested I take the Pax since I was on Revlimid. Very encouraging, said it would make me feel better faster. I started the Pax. Friday my coughing was gone except for some sporadic fits, no fever, and feeling I had energy. I didn’t need to nap and actually accomplished quite a bit. Today, I feel pretty good. The downside to Pax is the nasty metallic taste in your mouth and the GI problems. Do I think the Pax helped me? Honestly, I think I was getting better on my own at the point when I started it. Maybe it did maybe it didn’t? In the end everyone got COVID. The grown children have it the worse and are taking the Pax and I don’t really think it helped them. The grandchildren are doing OK, and the hubby is OK if it wasn’t for the really raw sore throat. My younger grown daughter finally tested pos after 5 days and only complains of a dry throat and cough. Hope this helps! Stay healthy and safe.

  June 25, 2022 at 12:12 pm #58352
  Mar

  Participant

  Hello all,

  I’m 72 with DX of MDS-RS-SLD. I’m low risk, no treatment, blood draws and oncologist visits. I very concerned so I mask, still use wipes at gas pumps, hand washing and sanitizing. Maybe over protective? I have iron overload and macrocytic anemia. I suffer from breathing and fatigue. Ugh!

  I have 4 Pfizer shots, flu shots, shingles shots. I DO NOT want any infection, no colds, flu, bronchitis, COVID, etc. I do go for lunches. My friends respect my choices. I live with family. So far, so good. It’s just a change of lifestyle, but if it means staying safe, I do it willingly.

  July 25, 2022 at 10:47 am #58471
  lisab

  Participant

  I’m a mds 5q patient. Caught covid the end of June.I’ve had 2 Pfizer shots and 2 boosters. I’m a resident in Ontario Canada and recently they dropped almost all the restrictions for covid. Even though I still mask and use sanitizer, I still caught it.
  At first I had cold symptoms and tested negative using a home test kit. Next day I was running a fever and tested positive. At peak my fever was 100.3 and I took tylenol and used a cool washcloth to bring it down. It lasted about24 hours. The worst part was the coughing which was dry and hacking. On a visit to my nurse she found I had some fluid build up in my right lung. I was prescribed antibiotics and an inhaler. It is still not completely gone a month later but clearing.
  It hasn’t been fun but I believe the vaccines I received helped keep it from getting worse.
  All we can do is the best we can to protect ourselves. It hasn’t gone away. I continue to practice distancing, masking and use sanitizer. Hope to never get it again.

  September 16, 2022 at 12:47 pm #58630
  lisab

  Participant

  To update my last post, I’m almost 3 months after omicron and I’m still having difficulty breathing. My GP has prescribed 2 inhalers and done an xray. Seems I may be a “long hauler”. Going back to see my GP and waiting to see my hematologist/oncologist next month.

  September 19, 2022 at 9:24 pm #58633
  Mary Roth

  Participant

  Thanks for sharing, Lisa. I’m 5q, have had 5 Covids shots, and mask most of the time. I haven’t caught it, yet. It is scary to know that covid vaccines don’t prevent covid or long covid. Best wishes!

  September 20, 2022 at 9:12 am #58634
  lisab

  Participant

  Mary
  The vaccine helped prevent me from getting it worse. Many unvaccinated people have died of covid. I am grateful I got my shots and am waiting to get my 5th. It is highly contagious and the vaccine is meant to help protect. I am immune compromised and didn’t get so sick I had to be hospitalized.
  My point is while many are tired and just want this to go away,IT IS STILL OUT THERE. We still have to live our lives. I continue to go out when I have to, socialize some but mostly outside.
  We have to continue to be vigilant. Mask and sanitizer.

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