Triple negative essential thrombocytosis

I suggest finding a medical care center that's open this weekend.

Better to find out than to worry.

What a tough time you're having -- I'm so sorry.

I agree get it checked out. Usually a duct is hot and hurts, but maybe not all the time. Better to be safe than sorry

@eloise999
It’s on the back of my knee or leg. My knee is a reddish color. It’s been that way for a minute and always warm. Not the swelling..Now I have a swelling on left side of upper rib cage area near breast and lymph node swelling on R side of inguinal area. I’ve had Thrombocytosis and anemia for over 15 years. I didn’t start seeing a hematologist until 2021 .. I also have several birth defects from Agent orange. (Dad in Air. Force 1973). I was born on Base in 73. I am Triple negative.. I’ve been having problems for awhile lymphnode swelling, fatigue severe headaches, last 2 year..erythromyealgia . Sensitive to heat and sun and then I started getting Raynauds or something similar around mid January everyday numbness and burning in feet and hands..leg pain which I’ve never had. dropping things..I Lost about 10-12 pounds since end of November beginning of December and a lot of bone pain especially on Left side of ribs to the back and upper abdominal pain and nausea when I bend over for about 8 months with nausea. It seems like every week its something new. My ferritin is a 12 and TIBC is off the charts. I had a CT scan of abdomen Tuesday, I was suppose to have an Iron infusion Friday and go over results from CT. My hematologist changed my appt to more blood work and go over CT Monday. I didn’t even see it on the portal, that’s never happened,, I’ve had that portal for over 20 years..I can definitely feel changes in my body from just from a month ago

I am sorry to hear all you are going through. I assume you already had a bone marrow biopsy since you know you are triple negative. I am also triple negative ET. I hope you get some answers soon. It can take awhile to find answers and the right treatment, but I found that eventually my treatment helped with my symptoms. I was also cautious about involving other specialists in helping me but now I find it very useful to have a cardiologist and rheumatologist. You might benefit from having a rheumatologist if you don’t already have one. Lots of folks have autoimmune symptoms. Best of luck. My thoughts are with you.

@eloise999
Thank you! Hope you’re doing well too.. I do have a cardiologist because I have a heart lesion birth defect that I just found out about 4 years ago before my hysterectomy 🫣. I actually I had to have an IV iron infusion for my anemia last week and I had an anaphylactic shock and that’s the first time I’ve ever had that! They even did a prophylactic before the infusion with dexamethasone and Pepcid and I still had an allergic reaction! A severe one..I thought I was gonna die! I am allergic to bleach, latex, flu shot Levaquin and doxycycline and also mosquito ,ant and bee stings… after the infusion was done I stood up and had severe bone pain and all of a sudden I’ve got Welps behind my arms and legs and then I couldn’t breathe and I passed out and ended up in the ER ..so now I’m going to be seeing an immunologist on Thursday to find out what caused it because it could happen again or there was already something underlying that caused it like MCAS or something else .I looked back at my bm biopsy from 2024 and I definitely have the kit gene mutation , the ATM mutation is also linked to MCAS. I’ve been doing my research because of misdiagnosis and doctors not really listening to your symptoms. I feel like I will get more answers once they do the Allergy &immunology work up bc something‘s getting missed in my blood work. My white blood count shot up to 15 and now I’m having nosebleed’s on the left side of my nose since the anaphylactic shock😞

@montyne Mygoodness. That must have been scary. You trust the products the doctor uses and then something like what happened to you happens. Do you have a good doctor who can help? Can you access second opinions? I never had anaphylactic shock, but I have had strong allergic reactions to odd things. One was an additive I my levothyroxine. Another time I had a reaction to the spice used to make Tibs dishes (Somalian cuisine). Even now I am not positive what compound I reacted too but at least I could isolate the problem so I can try to avoid a repeat episode.

Yes, I agree with everyone here, call the doc's office about the swelling. Offer to send the photo if you can't get in. Let us know what you find out. I appreciate you and everyone here who brings these symptoms to the group. MPNs can be managed and we can live relatively normal lives, but there are so many things that can crop up with or be complicated by chronic cancers.