Spleen involvement in ET

Posted by cgpak @cgpak, Mar 16 12:28am

Hello, I am wondering what the symptoms are of beginning spleen involvement in ET.
I was dx'd with ET in 2013 . My Internal Medicine doctor sent me to an Oncologist for evaluation when my platelets into in the 750 range. The original blood tests done by the oncologist showed a JAK2 mutation and I was given the diagnosis of ET. I was prescribed 500 mg Hydroxyurea along with 81mg. aspirin per day since at that time I was 68 yrs. I have remained on those meds since 2016.
In 2017 after a change in doctors I had a bone marrow biopsy that showed no other significant abnormalities. My medications have remained the same. Presently I see the oncologist every 6 months with a CBC and Metabolic Panel every 3 months. Covid has limited my appointments to online visits as the doctor does not identify any physical complaints or events I have had as being ET related.and my blood levels have remained stable. Recently I have been experiencing a fullness in my upper abdomen along with some intermittent pain under and below my right ribcage. I am wondering if this could indicate an issue with my spleen. I am not due to see my doctor until June.

Hello @cgpak,

I can understand your wanting to know about the experience of others with ET. I would like to invite you to read an ongoing discussion on this topic. Here is the link, https://connect.mayoclinic.org/discussion/jak2-negative-now-what/?pg=1#comment-467325, and @dwlowrance. Feel free to read the posts and to ask questions of the members who have posted. Just click on "Reply" and direct your question to the member.

Here is some information from Mayo Clinic's website as well, https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850.

I would also like to tag some members who might be able to share with you. @grandpabob, @trillium, @1nan, @dwlowrance, @loribmt.

cgpak, I would encourage you to contact your doctor's office about this new symptom of fullness and discomfort in the abdomen. I am sure that they would want to know about this change. Even though your next appointment is not until June, you should be able to contact the doctor's office through the patient portal, by phoning the doctor's nurse or the Physician Assistant.

As this is causing you concern, will you make contact with the doctor's office before your next appointment?

REPLY

@cgpak Hello and welcome to Connect. I am 1nan, one of the Mentors who received your message. While my medical diagnoses are different from yours, I can tell you that we all deal with similar issues along the way. I was interested in your concern with new symptoms and want to encourage you to be persistent and having discussion with your doctors about them. There is never a reason to wait until our next appointment unless it is within days of the new problem. If it is of significance, your doctor will thank you because it will give him or her an opportunity to do their best medicine for you. Good luck as you move forward in this journey. And I too encourage you to let us know how things are going and allow us to help as we can along the way.
Peace, Nancy

REPLY

Hello, My mother was diagnosed with MPN ET back in 2017 and that's because I kept seeing PLT numbers increase and I got curious, or else no one would have done anything about it. We ended up seeing a hematologist oncologist and she was place on baby aspiring, and we were told she is the type of person that builds blood clots but never thought anything more than that. My mom would sometimes remember and sometimes take it baby aspiring, not knowing the seriousness. As we hit the pandemic, my mom had a bad fall and she tore her shoulder and huge hematomas all over. Since we couldn't go to a doctor because of the pandemic being early on. We stayed home and I tried my best to care for her and make her comfortable to ease the pain. All this started increasing other symptoms which I couldn't understand. Severe Fatigue, itchiness all over that cause her skin to bulge up, pain in abdomen under ribcage, it just came to fast. We are still trying to educate ourselves on this ET because I don't know how to make her feel better and it breaks my heart to see her unhappy and not be herself. What other resources are out there that can explain all this symptoms and if they are forever?

REPLY
@lorena2021

Hello, My mother was diagnosed with MPN ET back in 2017 and that's because I kept seeing PLT numbers increase and I got curious, or else no one would have done anything about it. We ended up seeing a hematologist oncologist and she was place on baby aspiring, and we were told she is the type of person that builds blood clots but never thought anything more than that. My mom would sometimes remember and sometimes take it baby aspiring, not knowing the seriousness. As we hit the pandemic, my mom had a bad fall and she tore her shoulder and huge hematomas all over. Since we couldn't go to a doctor because of the pandemic being early on. We stayed home and I tried my best to care for her and make her comfortable to ease the pain. All this started increasing other symptoms which I couldn't understand. Severe Fatigue, itchiness all over that cause her skin to bulge up, pain in abdomen under ribcage, it just came to fast. We are still trying to educate ourselves on this ET because I don't know how to make her feel better and it breaks my heart to see her unhappy and not be herself. What other resources are out there that can explain all this symptoms and if they are forever?

Jump to this post

Hello @lorena2021,

I'm sorry to hear that your mother is having such uncomfortable symptoms. I appreciate your concern for your mom and seeking answers to help her. We all need advocates and it sounds like you are doing a good job.

Since her symptoms have worsened as a result of the fall, does she have an appointment to see a hematologist/oncologist now?

If not, I would encourage you to get an appointment for her. The doctor might want to change her treatment plan given the change in her symptoms.

Will you post again and let us know how your mom is doing?

REPLY

Thank you for your kind words @hopeful33250

After several months into the pandemic we ended up going into the ER because my mom was expericing severe headaches, she was not responsive at times, and she would pass out on me. That just took it up a notch and I was worried.
Interesting enough ER found nothing. I was soooo upset, I continued to deal with all this issues at home until we started visiting on her doctors and bingo when we met with Hemotologist he said it's part of her ET. That's when I said WHAT IS ET? What exactly is causing all this chaos? He just said blot clots was the issue and he just upped the aspiring to 2 everyday. He was not very approachable so I took my mom to another doctor for a "rightful" 2nd opinion. That's where our eyes were opened, sadly to say, but true. The doctor did recommend the chemo pill, but we were hesitant, we took sometime (but not long) to decide whether we should take it or not, given the history of cancer that my mother had and the treatments that she had taken.
My mother was scared and I completely understood her. So then I took her to another doctor for my 3rd opinion. I didn't want to put my mom through something she was not comfortable with, but I did need to address her symptoms.
Our 3rd opinion said do not take chemo pill because her level of platelets are not high enough to be alarming yet, he said if the count is at 900+ then let's consider it, but since my moms levels were fluctuating 560-680, there was no need to put my mom through the chemo pills.
Mind you after all this back and forth we decided let's go back talk to the first doctor, (assuming he had a bad day the first time we met) we went in with our hearts open but with direct questions to ask.

Note: I highly recommend to have your list of questions ready and be direct. Do not go in there as if you have not read about this or have gained knowledge, because they will assume you know nothing you will rely on what they say. Study it first and go in and be direct, to the point. show up as you know your stuff but you want him to take the action to explain it and recommendations for you to make decisions.

Anyhow, So we went back and we asked away and he knew then we were ready, he immediately examined my mother, she spleen appeared enlarged, her PLT went up, he said he does not recommend chemo pill, due to PLT count were not high or alarming enough. This information matched with our 3rd opinion doctor.
This helped us make decision to not take the chemo pill and just monitor.
We went to see a neurologist that dealt with headaches and my mom shared with him the itching problem and he prescribed hydroxyine 10mg. Bingo that did it. The medicine is for headaches but also treats itching like the one my mom had, which was severe and skinned bulged.

WARNING: this medicine (HYDROXYINE) will knock you out literally all day, (everyone is wired different, but it won't happen to you) we did get a lower doze 10mg, but it would still knock you out for a day, but it reliefs the itching which caused my mom anxiety and not being able to sleep. Medicine we took it once a week, until we started seeing condition was decreasing, and eventually stopped. We tried all creamed to be, natural stuff, but nothing worked. She is now itching free for the past 4 months. She only took that medicine when the itching appeared and we knew she would be out for 1day and half without being able to do a thing. Have someone with you, to help you or wake you up to stay hydrated, eat, and go potty.

My mom is continuing to check her blood levels every 3 months, she is required to keep maintain an active lifestyle, walking, because of the blood clots. She does have a peak time where her body just shuts down, but she tries all her best to stay active.

REPLY
Please sign in or register to post a reply.
  Request Appointment