Anyone else find the side effects of Hydrea 500MG frightening?

Hi @garyr443. Every second, our bone marrow produces several million blood cells. Over a single day, we produce 200 billion red blood cells, 400 billion platelets, and 10 billion white blood cells. Each cell replicating with incredible precision, identical clones of each other. It makes a copy of its DNA and sometimes the copy is not quite perfect. That small difference from the original DNA sequence is a mutation. All it takes is one strand of DNA to misfire in a cell to set the ball rolling for a blood cancer or condition.

We all have cancer cells floating around our body daily. But our immune system is on a mission to seek and destroy these rouge cells. Some of the defects that happen also allow them to go undetected by our immune system. When that happens, those defective cells keep proliferating without an off switch.

Most of the defects have unknown causes as to what triggers the misfire, but there are some strands of DNA more susceptible to mutation than others. From what I learned mutations can happen randomly. There are spontaneous mutations that concur naturally during DNA replication without any external influence. And some through exposures to toxins such as pollution, viral infections which can insert their genetic material into host DNA, causing mutations, ionizing radiation found naturally in our environment, from random gamma rays shooting through the earth, the aging process, etc., all of which may break down healthy DNA. If there’s a weak spot, that’s the first place to misfire.

In your case, you have acquired a mutation on your CALR gene. Mutations on that gene change the protein in a very specific way. They alter the last section of the calreticulin protein, called the C-terminus, the tail end of the protein chain. Every time a cell with that defective DNA splits it creates malignant clones.

The good news is that with continued research, there are new abrogating drugs and targeted therapies being developed which are aimed at molecular remission and eliminating the malignant clones.
I’ve benefited from abrogating drugs myself in my AML (acute myeloid leukemia) odyssey. I have some amazingly brilliant research scientists on my medical team. We’ve discussed my case at length. While there may be theories as to what caused my 3 mutations of AML, there was no precipitating event that could be attributed. But thanks to these targeted drugs, the most aggressive mutation was curtailed.

So the good news for you and others with the CALR mutation is that there are ongoing clinical trials for bispecific antibodies. These are engineered to bind to the mutant CALR while simultaneously engaging a T-cell to destroy the malignant clone.

In fact, right now, our own member @drbart86 is involved in this clinical trial for the CALR mutation! He’s been sharing his journey with us.
https://connect.mayoclinic.org/comment/1607218/
Other areas being explored are:
~Chimeric Antigen Receptor (CAR) T-cell therapy
~Peptide vaccines to train the patient’s immune cells to eliminate cells carrying the CALR
mutation is another area of potential.

While you may never know the exact cause of your mutation there is hope on the horizon that you may not always need the HU. I’m sorry to see the juice experiment was a bust. But thank you for sharing your information with us.

Frankly, I find the "side effects" of every drug on the market frightening! Especially the ones with side effects that can lead to death!

Hi @gajokos ,
I have already share my opinions on what I feel is best for me to be doing so won’t repeat them again. I may not have mentioned that getting enough good quality sleep nightly is very important for me. I have never taken naps and do not think that would be a good idea for me to do. I try to get at least seven hours of good quality sleep nightly as that gives me my good daily energy I think. All the exercise I get daily with walking, yoga, biking, gardening, etc. during the day helps me sleep well at night too. Everyone needs to do what they believe is best for themself I think.

@janemc The cause is an acquired mutation, though which mutation it is seems to vary. Mine is the CALR Exon 9 mutation and, apparently, it has existed since I was 52, as that's when an old medical record shows my platelet count was first recorded as being high. The year before, it was normal. I'd like to learn more about these mutations and just how and why they are "aquired," but there doesn't seem to be any information about this.

@1pearl hello again! As you might remember, I too have avoided HU. My platelets have been fluctuating in the 6-800 range since I was diagnosed a little over a year ago. If I recall clearly, you have kept to a healthy lifestyle and nutrition, any other recommendation(s) you would like to share beside remaining positive and following your own path?

@hughp

I'm so sorry to hear about your diagnosis, hughp.

That is amazing success, bringing down your platelet count so quickly!

I was diagnosed with Myelofibrosis in Feb of this year; I have been taking Hydroxyurea from then until current date: it has brought my platelets from 800’s to 241 (latest blood test one week ago.). I have encountered no complications or side effects to date from HU.

❤️

@1pearl

I'm so glad you're doing great!

This is yet another example of why an ET diagnosis is so diabolical.

I hear one thing from my oncologist . . . others hear something else entirely.

Utterly confusing.

To me, what I heard makes sense: manic overproduction of platelets strains bone marrow. With HU, the stress on the bone marrow is reduced.

Without intervention, the bone marrow is depleted. And the success of a bone marrow transplant is far from assured.

How long will it be before MPNs are truly understood? Not in my lifetime, I'll bet.

Hi @janemc,
You are very lucky that your oncologist/hemotologist told you that Hydrea helped your bone marrow. Both the oncologist/hemotologist and bone marrow transplant specialist I saw last year when I had Kaiser insurance told me that Hydrea did nothing to protect bone marrow. It just reduces blood cell counts and my platelets went down by 400 with me taking nothing! Maybe that is why I never considered taking Hydrea and will not ever take it. The bone marrow transplant specialist said I was in no need of a bone marrow transplant when he saw me and was not sure if I ever would need one. I will see a true MPN specialist soon since I changed my insurance 1/2026 and my new primary doctor honored my request to see the head MPN specialist at UCSD for the CALR mutation I have. (Kaiser has no MPN specialists.) I am looking forward to finally seeing one and blessed that I feel fine with no symptoms as I always have.
Happy 4th July long weekend to all!