What relieves pain from an enlarged spleen in leukemia?

When you have leukemia it’s important to speak with your hematologist before taking meds for pain. Basic over the counter pain relievers are usually ok such as Tylenol or Advil/Alieve. But they’re not always safe for everyone. Case in point, most often Tylenol is the choice but because my liver was damaged with treatments, Tylenol was on the ‘nope’ list. So it’s really best to just make a call to your hematologist’s office and speak with the nurse.

As far as an enlarged spleen, from my experince, yes, treatment did reduce the size and it became less painful. Also, I found eating very small meals or grazing were better. Lying back when your tummy is full, is also better than sitting upright. I walked around a lot too!

What type of leukemia do you have? When will you begin treatment?

I have MF and MDS. My spleen was huge and the pain and discomfort were bad. I could only eat very small amounts at a time so had to do like Lori said and resort to grazing through out the day in order to get the nourishment I needed, and to help keep the pain down. They did a scan and tattooed dots on me for alignment so they could radiate my spleen to try and shrink it. A couple of days before the procedure took place my Doctor decided to try a drug called VONJO. It is taken orally. Within two weeks of starting the Vonjo my pain degreased significantly. Within a month my spleen was no longer enlarged, the pain was totally gone and I was back to eating a full meal. That was a couple of years ago and I never did take the radiation treatment. I have continued to take Vonjo and so far the issue has not returned. I wish you well, and try to stay on the Sunny Side. "It will help us every day, it will brighten all the way If we keep on the sunny side of life" God Bless you.

Thanks so much! I’m actually asking for a friend and will pass this along to him. I wish you well and appreciate your help.

Lori thanks for your response! I’m fortunate in that I don’t have leukemia, a friend was just diagnosed and I was asking for him. Your personal experience will help others and I will pass your message to him. I hope you are doing well.

@loribmt. What type of leukaemia does your friend have?

It’s monocytic leukemia. He’s awaiting bone marrow biopsy results in a couple of days, then will know more. Thanks for asking.

Your friend may have a little bumpy ride ahead. It depends on the type of monocyte leukemia…if it’s acute or not.
I’m going post a link to an article for you so you’ll be aware of what your friend may be dealing with.
https://www.healthline.com/health/aml/acute-monocytic-leukemia
Your friend has a type of AML which can be very aggressive. I had AML with 3 mutations, 2 of which are listed in this article. These can make the condition a bit of a challenge. However, I want to offer you some hope for your friend. I’m now 5 years post AML in a full/enduring remission after a bone marrow transplant.
Depending what is found on your friend’s bone marrow biopsy and if there is any gene mutation involvement, they will need to start some form of treatment soon. It will depend on the results of the biopsy.

Don’t hesitate about asking for more information here. There are a number of us who have had AML and more than willing to help you answer questions for your friend. Wishing him all the best! Keep in touch, ok?

Lori thanks so much for this information! I was under the impression this might be CML because in reviewing his CBCs, he had monocyte counts over 30 2 years ago which were never mentioned or investigated. I will read the article you sent and am so glad you have done well post BMT. Some hope is certainly welcome 🙏

@slkanowitz I hope your friend gets a good report. Wishing him all the best!

Blood cancers can overlap in their symptoms so until the bone marrow biopsy details are analyzed it can be difficult to define or give a diagnosis. Even then it can be challenging. And some of these conditions can take years to develop.

Even though your friend’s monocyte counts were up a few years go, that may not have been enough to indicate a future problem. Elevated monocytes may indicate conditions like inflammation, infection, blood disorders other health issues. In my case, I had a routine physical and a CBC with differential panel just about 6 months before I had any hit of my AML. Looking back on those records, knowing what I know now about blood work, there was absolutely nothing on that panel to indicate I had a potential firestorm waiting to blow up six months later.
Frankly, there is no point for your friend to wonder if something was missed previously. I know it’s human nature to do so, but it wouldn’t have changed anything anyway. This is his new starting point on a different path. I always thought about my odyssey as my ‘Indian Jone’s adventure…life sure hasn’t been boring after my AML/transplant journey but wow, what a ride!
Let me know how he’s doing along the way. ☺️