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Rib/Spleen Discomfort - Dasatinib

Hi everyone,
I am a 33 year old male, recently diagnosed Ph+ 1.5 weeks ago.

I started Dasatinib 100mg 9 days ago. After 4 days I noticed aches in my left rib cage/abdomen and it has persisted since then.

I am anxious that my spleen is enlarging again and my TKI is not working. I have not had any blood work done since being prescribed dasatinib on September 1st.

Is this common? Even though the doctor could not feel that my spleen is enlarged, is it more likely this discomfort could be from my spleen continuing to shrink?

I see my hematologist in a few days.

Background-
At initial consult 4 weeks ago, WBC was 325k, doctor mentioned my spleen was 5cm below my rib cage.

I was on hydroxy urea for 2 weeks and my WBC reduced to 17k.
At this point my doc could no longer feel my spleen and I had no discomfort.

Worry not your TKIs will do their job, and there are many options if you have trouble with a particular brand. Give it time… not days, but several months. You are very early in your treatment, around 12 months you’ll be able to get a better sense of whats what. After 4 years i am still getting some discomfort in my ribs and all my joints. Now i can’t predict how your body will react to TKI, but statistically speaking all should normalize in several months from now. In my experience: you’ll have to somewhat re-learn how your body works, but you’ll get used to it.

 

—Thomas

Thanks for the kind words, Thomas.
Bit of a stressful time, all the waiting is tough, and I am definitely hyper aware of my body I suppose.

Was doing pretty well a month ago when doctors expected that I had CML, but shortly after I had another retinal hemorrhage that affected my vision pretty badly. That sent me into a bit of a negative spiral.

My eyes have already started to improve, and as you say this too will take months not days.

Patience is something that I will definitely need to learn 😊

Thanks again and take care

I contracted CML in 2004, and it was confirmed on June 14, the day before my 54th birthday. I started taking imatinib in July of that year. I have rather a chequered health history, having had a heart attack 3 weeks after my 37th birthday. In total, I have had 3 MI’s, but none this century!
I am now 72, and a few months ago my haematologist told me that he had good and bad news for me.

“Richard”, he said, “the good news is that we can find no trace anywhere, in your system, of Leukaemia. It has been 16 years of imatinib, but we have now beaten the cancer.”

”The bad news is that you have to stay on imatinib for the rest of your life, or else it will come back, and we would not be able to stop it, and it would kill you”.

So, I put up with the damaged spleen, the breaking nails, the bruising, the changes in bowel movements, and everything else, knowing that I have beaten it (with a little bit of help from the NHS).

So, Why do I still get the symptoms?

 

Hydroxyurea is quite a powerful/heavy drug. Im sensitive to my body at normal times but while on it (3-4 weeks) I became even more soa and this continued till my blood parameters were back to normal, ie hematologic response, which took several months.

It may take you several months to get back to normal, meanwhile you can explore this temporary superpower and try to tune in to whats happening in your body. Just be aware, try not to make a judgement or think about what the sensation means. "I notice my left side has a new ache today, very good" rather than allow a thought or judgement "oh this must mean im getting better/worse"

Hey,

I don't want to alarm you but if I were you I would make sure it is not pleural effusion; I had that when taking Dasatinib and I found out precisely because I felt a small abdominal pain in the lower chest area, similar to what you describe.

Pleural effusion is easily detectable, a thorax x-ray is enough.

Of course it can also be nothing, and hopefully it's just your body getting used to Dasatinib.

 Best wishes,

Davide

 

Thanks Richard - you're a tough guy battling this for so many years. Your good news definitely outweighs the bad!

Davide & Evah,
Thanks for the replies.
I had an appointment and my WBC is in the normal range. I've had a good hematologic response to dasatinib.

Knowing that, my ache is probably 5% of what it was previously, now with the absence of my anxiety about it. Funny how that works!

I will keep an eye on it and if it persists or worsens, I'll have an x-ray.