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We will still get the common cold!

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Hi all,

So, I'm here on my couch, with my first common cold after diagnosis. A bit of cough, stuffy nose, fatigue, and a weird thought in my head: how can I keep my head clear from now on, when a simple health-related issue comes my way?

I'm now almost 8 months with cml, on nilotinib, and luckily in MMR since November. I would say I have managed to be calm (first week after diagnosis exempted) while on this journey. However, when anything remotely small happens, the first day is a mental roller coaster, despite what other people see: minor side effects, a bruise here and there, some bone pain, a small rash, some falling hair, a case of short breath, a heartburn... A common cold, and my mind races.

How do you cope with such a type of anxiety? So far, a have come up with a rule: give it 3-4 days. Since most of my very minor side effects come and go in around that time frame, this is my golden rule. Of course, if something seems more serious (e.g. High fever), I call my doctor.

What's your golden rule?

Regards,
Koralia

Hi Koralia,

Gosh I am sure we can all relate. I am nearing 2 years since diagnosis and certainly in the earlier days I would get suspicious at every cold, ache or pain and would convince myself CML was taking over. Only with time do you learn to relax more, common cold, ache or pain I am sure your CML is just fine. And you MMR which I am not so you are quite safe from this ever being an issue.

I too am Nilotinib and had a high Sokal score at diagnosis with a wbc of 330, massive spleen etc. I was 0.118% in October so very very close to MMR and I am sure I am by now.

My go to since diagnosis was managing my anxiety. I started to learn mindfulness and meditation and I can truly say this has changed my life. I’ve been practicing for 2 years since diagnosis and I am much calmer less reactive to my thoughts. It’s a wonderful place to be and I only recognised the benefits about a year after starting. It’s slow going but truly transforming. It’s not for everyone but for me I believe it’s saved my mind and to some extent my life.

Dont get me wrong you will get moment we are all human but I worry far far less these days.

You too will get to that point in time. Be kind to yourself and be patient it will come.

Enjoy MMR land and move on with your life.

Alex

Hi Alex,

Thanks for your reply
:-)

It's always comforting to know you are not going crazy, and there are other people out there who can relate.

As a concluding remark: I definitely need a new hobby! Keep busy!

P. S. 0.092 is not that different than 0.118, I think the difference is mostly psycological. So, enjoy what is soon to be MMR too!

Regards,
Koralia

"We will still get the common cold!"

For what it is worth - ever since I began taking vitamin D3 supplements sufficient to raise my blood vitamin D level to 60-70 ng/ml, I have not had a single cold - (or flu for that matter). No respiratory anything. I used to get several colds per year all of my life and especially around CML diagnosis along with bronchitis, sore throats and generally miserable sick feeling. Almost every year I would catch the flu during winter. Without fail, I was a cougher, sneezer and otherwise a favorite target for the Nyquil advertisements.

Since about 2013 when I learned about vitamin D's impact on our immune system - I caught nothing. In fact, friends around me who would get sick and would sneeze all over the place - failed to get me sick. I think maybe one time, I felt something coming on - and it lasted half a day, but by morning gone. My wife has started to up her vitamin D level and she now enjoys cold/flu free winters.

I am a strong believer in the power of vitamin D to "activate" our immune system overall. You would think the medical "community" would suggest to people get their vitamin D levels checked and elevated.

https://www.nordicnaturals.com/healthy-science/vitamin-d-cold-flu-season/

"We will still get the common cold" - Not me. Not any more. And I strongly suspect it is why I am "undetected" for CML on such a low dose of sprycel.

 

Hi Scuba,

Indeed I fully believe you. My D3 is ramping up a bit slowly, last check was 33, but I'm sure it's higher now.

On the other hand, as you said, in the past I was also an ad model for anti-flu and anti-cough medicine, since I was a child.

This year, since I started taking D3, all my colleagues have been sick around me, and I didn't get anything since October...until 10 days ago. So I almost dodged the bullet.

Let's hope that as my D3 ramps up further, I will also get rid of the common cold as well :) :)

Regards,

Koralia

How much vitamin D3 are you taking?

I was taking 2000 per day, but since I saw the increase is slow (I went from 16 to 33 in 4 months), I asked my doc to get more.
So now I switched from daily pills to that thing that is like oil, weekly 25,000.

To my understanding, she doesnt want to go higher than 4000 a day.

I buy my vitamin D3 at the local food/vitamin store.

I take 5,000 IU's per day in summer and in winter (i.e. now), I take 5,000 IU's one day and 10,000 IU's the next.

This is how I was able to get my vitamin D level up to where it is now (~70 ng /ml).

Not everyone will react the same, so testing is needed.

I also don't need subscription for D3, but my doctor wants to monitor it (actually, two doctors, haematologist and endocrinologist), and not increase the dosage too much, in case it goes through the roof.

I have my tests due for next week, so depending on what numbers we've reached now, we might change the dosage again. We haven't tested since I switched to 25000/week.

Let's see :)

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same.  My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I have experimented with dose on D3 supplementation.  My GP recommended 1,000 iu's per day so I started at 2,000 because I have a bit of rebel in me (but nowhere near as much as Scuba).  That got my D3 into the low 40's so I increased to 3,000 iu's per day and it went to mid 50's. I'm now taking 4,000 per day and level has been 70 for over a year.  I have my D3 tested twice per year at the same time as my PCR, which has been >MR4.5 for nearly 3 years now. Oddly enough, my immature granulocytes  were zero when my D3 was in the 40's was at or near zero, but last reading was 0.3% with an undetected PCR.   So I have stopped worrying about the immature granulocytes.

Your doctor is right to want to monitor it, because as Scuba says, we are not all the same.  My D3 level was at 25 when I was diagnosed, not critically low, but certainly not high enough. I have experimented with dose on D3 supplementation.  My GP recommended 1,000 iu's per day so I started at 2,000 because I have a bit of rebel in me (but nowhere near as much as Scuba).  That got my D3 into the low 40's so I increased to 3,000 iu's per day and it went to mid 50's. I'm now taking 4,000 per day and level has been 70 for over a year.  I have my D3 tested twice per year at the same time as my PCR, which has been >MR4.5 for nearly 3 years now. Oddly enough, my immature granulocytes  were zero when my D3 was in the 40's was at or near zero, but last reading was 0.3% with an undetected PCR.   So I have stopped worrying about the immature granulocytes.

I have to "take" more vitamin D3 in order to get it into the low 70's (ng/ml) because I also take vitamin K2 (and eat Natto, which is high in K2). Vitamin K2 "uses" D3 in order to bind calcium and move it to bone. So I use up more D3 in the process.

(D3 is important for both immune function and bone)

vitamin D3 and K2 work together. Consider taking K2 along with your D3.

https://riordanclinic.org/2013/10/vitamins-d3-and-k2-the-dynamic-duo/