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COVID POSITIVE WITH CML

Hi guys, just wanted to share some news that might put a lot of people at ease. I was detected with CML in late 2017 and ever since have been well on my way to recovery with Imatinib. (400 mg once a day). In october i was diagnozed covid positive and being a 40 year old with no other underlying issues  i just wanted to say God has been very kind. My doctor told me to stop imatinib as it generally supresses the WCB count and thereby perhaps could hinder in the getting better process and so my journey of covid was like this:

 

Day 1- Body Chills, no fever.

Day 2 - Fever (touched 100.5)

Day 3 - Fever on and off ranged between 99 to 100

Day 4- No fever but cold and blocked nose symptoms started

Day 5- Fever totally gone but blocked nose and slight cough

Day 6-  Loss of smell and taste

Day 7- Cough and Cold status quo

Day 8 to 12- All symptoms reduced to practically pre covid

Day 12 to 14- All back to normal 

The only thing I took to treat covid was A LOT OF WATER, Vitamins (esp Vitamin C) and a whole bunch of other natural remedies like Hot water with Ginger, turmeric etc etc.

So guys if any of you heaven forbid also test postive i just want to say DONT WORRY ITS NO BIG DEAL infact i personally feel our CML treatments somehow help us though i dont have any evidence of this but i just feel it. 

Let me know if i can guide/help any of you whenever required. Take care everyone and stay safe.  

Hi Amit,

Thanks for sharing this. I now a lot of us CMLers have been wondering how it would effect us if we were to get it. Of all this I very suprised they told you to stop Imatinib during your COVID infection. Strangley I know that Imatinib has been shown to have some postitive effect on COVID from some studies/trials.

It seems your sympotoms are classic COVID and glad you got better.

Alex

I too am on the tail end of a COVID issue.  My wife got the test and it was positive (got it due to loss of taste and smell) so when I started feeling body aches/runny nose/slight cough/and overall tiredness I assumed it was COVID.  I did not get a test because my wife and I are not social distancing....I am feeling better and for the vast majority of people it will be like having a cold or flu.  I kept checking my fever and bought an oximeter just to be sure I was in the clear.  Fever only went above 100.4 twice to 100.5.  Ibuprofen and rest with lots of water is what I did.  For some it is more serious so if your cough worsens or you notice anything worsening regarding breathing do take it serious and get checked out.

Oh yeah and I just kept taking Vitamin D3 and K.  Ginger tea as well a handful of times while resting.

Hi All,  I'm so glad that you are all okay and thank you for sharing with us all. Covid-19 is scary for everyone being diagnosed with Covid-19 and having CML may have sent you into a cold sweat!! I know it would have me. Its really good that you have listed the symptoms and remedies you have used. I must get some ginger tea and tumeric in. also as mentioned within the forum by Alexmcpee and Scuba find out about Vit D levels.    

 

:) thank you. yes even i was surpised but he felt it would be better for me so i just followed docs orders :). Take care and let me know if anyone needs any help anytime. 

Thank you :). Nothing to worry about, covid is no big deal, its more the uncertainty that worries everyone. 

Hi guys! have you stopped your TKI treatment while your had covid-19 infection?thank u! 

Thanks Amit.
I'd like to state my case. I am 39 from Illinois. Have CML since 2017. Have some other conditions like blood pressure and diabetes. Got and recovered from covid in November. I was on imatinib the whole time. I had fever spiked upto 102, had cough, runny nose, chills, extreme fatigue, zero smell and taste. However I didnt have any body ache. It took me approximately 12 to 14 days to recover. O2 level was good all along. The cough stayed for a while though. Its still on and off in reduced intencity but getting better. The real pain in my experience was the constant fear of an uncertain outcome.

Hi Sid

So, you never stopped taking Imatib during those 12-14 days that you were with covid infection?. 

Thanks for your asnwer.

Great! good to know it Sid! some people stop treatment, other don’t, who can decide what to do ... sometimes i feel lost about this things, i just have 9-10 months with cml and sometimes i feel so confused, and overthinking about every situation that could happen to me and i won’t know what to do. Hopefully i found you guys in this forum and now i know that i am not alone in this journey, 10 months later and i am still trying to understand how life an future can change in a blink of an eye, so fast .... Thank you guys for your answers and for being so great support for people like me who have tons of questions. Thanks! 

I can totally understand Mil. Its indeed overwhelming. It makes you feel you are at your wits end. But, trust me you are not alone in this journey. We are all in it together. Keep faith dear. You will prevail.

I would not discontinue my TKI treatment if I contracted Covid. TKI's impact the myeloid arm of blood differentiation. Virus' are attacked by the lymphoid arm which produces T-cells and is largely unaffected by TKI's. Stopping treatment does nothing one way or another in affecting the course of Covid.

What will affect the course of Covid are various co-morbidities such as diabetes (metabolic health), obesity (lung function) and a few genetic markers such as blood type) which predisposes a person to higher risk of severity (including low vitamin D status). One factor affecting Covid susceptibility and especially severity is T-cell activation. People whose T-cells are not functioning properly - or worse, T-cells not "allowed" to function are at greater risk of Covid severity. Vitamin D is necessary to activate T-cells and also to keep them from over-acting (cytokine inflammation leading to Covid induced hypoxia) once the virus is under control.

The single most important test you can have is a vitamin D test so you KNOW your vitamin D blood level and supplement to raise it, ideally above 50 ng/ml (but kept below 100 ng/ml). As was pointed out elsewhere on this forum - be mindful of the vitamin D unit of measure: nanograms per mililiter (vs nmol/liter). Low vitamin D status practically invites a Covid infection.

And despite all of this, 99.9% of people who get Covid regardless, survive. Covid is a respiratory virus similar in genetics to the flu. The vaccines will help, but permanent immunity is not likely. Covid is going to be around and rear its head from time to time the way other various strains of flu do. Your best defense is a healthy immune system. Surprisingly, TKI treatment can lead CML patients to a much stronger immune system once CML is under control (FISH < 1%)*.

Washing your hands every time you return home, Keep a distance from sneezing, and coughing people and not touching your eyes until your hands are clean will do more to minimize your chance at getting Covid than anything else. Masks are largely ineffective studies have shown. And this is because people are touching them all of the time and they are not of the N95 surgical variety AND worn only once.

For those who have loved ones who have died from Covid, it doesn't matter that the vast majority of people survive with minimal symptoms.. But then again, so is the flu deadly. Flu is quite dangerous for older people (and young people too in some cases!). Covid needs to be put in perspective. It will take awhile as vaccination, awareness and herd immunity spreads.

(*When CML is first brought under control by a TKI, a person's normal immune system prior has been greatly impaired by CML expansion. Once CML is mostly eliminated, it forces normal blood making and immune system restoration to flourish once again. A person following successful TKI treatment essentially has a new young, healthy immune system re-created from normal blood stem cells. This is one outcome of TKI treatment when TKI treatment is effective.)

For what it's worth, my haematologist told me to keep taking dasatinib while I had COVID.

Vaccine booked for Thursday, so natural immunity + vaccine immunity ought to be fairly strong.

yes i was advised to stop as my doc said it will reduce my immunity further. basically from what i understand by taking Imatinib one of the things that happens is our WBC is lowered so by taking these meds we are more vulnerable as our WBC count is usually in the lower part of the range. So to be extra safe my doc advised to stop taking the IMATINIB. 

i guess it depends from person to person. There doesnt seem to be one answer for all. Thank you for your inputs.

Hi David,

Did you receive a letter or was it a random phone call for your vaccine (Great news). I am half expecting something this week for myself.

Thanks

Alex

Hi David

As Alex said great news about your vaccine appointment. Please let us know how you get on. I am also expecting a letter/message asking me to go for mine soon.

Best wishes

Diane

I had a text from my GP surgery earlier today inviting me to say if I want the vaccine. I responded with a yes, obviously, and am now waiting to hear with an appointment date and time.  It looks as if it will be a local one - probably at the GP though not 100% sure.  I was actually expecting a letter (since we've been getting shielding letters from the Government) though I my flu vaccine invitation (which came early because of CML) came by text from my GP so that is consistent with the COVID one I suppose.  Either way, good to know they have me on the list.

Hopefully I will get the actual appointment notification soon.

RIchard

I got my invite via text as well - and got the Oxford / AZ vaccine this morning.

David.

Yes, I too got the AstraZenica one . My 'invite' was via my GP but they are using a local hub so I had to queue for around 40 mins. Army med corp very efficient at doing the vaccinating. 

Sandy

Fantastic Sandy. The UK govt so far are doing such a great job getting this rolled out. May it continue! I look forward to getting jabbed myself.

Alex

Thank you Amit. Yes, one doctor said to me that imatinib does not affect inmune response, but then other doctor said it does, who knows ... i think it depends on the doctor who treat us, hope all of you guys keep safe and healthy!

Great Sandy and David! let us know how you feel after vaccine please. 

Hi everyone, I was diagnosed with CMS in 2015 and I've just vaccinated this morning with the Pfizer vaccine. So far never heard any special side effects from the other people who have CMS and I'm also not feeling any side effects yet. My brother is living in his flat in Greece for a while and he also vaccinated with the Pfizer vaccine and he also doesn't have any complaints so far. 

Following the first text at 12.03 yesterday afternoon, I was notified of an appointment today within about an hour.  So, I had my vaccine this afternoon - the Pfizer one - all fine. Can't complain about the speed and efficiency in getting that done.

Arm sore (like all vaccines I have!) but nothing else.

Richard

Great Nathan! thank you for letting us know! 

Nathan ... did you mean to say the you were diagnosed with CML rather than CMS? I have edited the part of your post that included a link to advertising 'flats in Greece' for obvious reasons. We do not support advertising links on this forum.

Sandy