ET and lumps?

[Lena1992]

hi, this is my first time posting and new to this site.

I was diagnosed with ET in May 2020 after finding my platelets were high whilst pregnant with my second daughter. I was just put on aspirin daily until my platelets shot up to 1500 and stayed that high for a few week/a month in February/March of this year. I have since been on interferon alpha, which has been working in bringing my platelets down to around the 300 range. I’ve been really happy about this until I came up with a big lump on the side of my thigh. My consultant wasn’t concerned and just told me it was nothing but I was worried so went to my GP who referred me for an ultrasound. I had the ultrasound at the beginning of September and he couldn’t see anything so suggested I have an MRI to be safe. I had the MRI at the beginning of October and again nothing could be seen. I haven’t heard anything since and guess it’s just nothing. Saturday just gone I noticed quite a large lump on my stomach on one side. It feels exactly the same as my leg one and again is very noticeable and you can feel it easily too. As usual I cannot get through to any of the consultant team or day unit staff and am quite worried. Even if it’s nothing, why am I coming up with lumps every couple of months and getting no answers. Has anyone else experienced anything similar and can help me a little bit as I’m getting nothing from the people that should help.

thank you to anyone that has read this. Sorry it’s such a long post.

[hunter5582]

Any anomaly like this needs to be properly assessed and diagnosed. I doubt any of us could give you a clear sense of what is going on.

I also get lumps, which in my case are recurrent lipomas. I have had a total of 7 removed. Lipomas can vary in size and type. Some are soft and fatty. Others are hard/calcified.

Having a MPN predisposes us to a variety of other types of neoplasms. While these recurrent lumps are likely something benign, they are not something to be ignored. Assertive patients receive higher quality care. Passive patients do not. It is definitely time to be assertive.

Please let us know how you get on.

[Anag in reply to hunter5582]

this is also my opinion exactly. Inform yourself not only about mpns but also about these lumps or lipomas. Find websites from natural medicine websites. They often know more about the cause of these.

health.clevelandclinic.org/...

healthline.com/health/skin-...

I really like health line.

Please try to get ALL chemicals off your plate, off your skin and out of your home! This has helped me enormously. Most of my allergies and intolerances, and autoimmune ailments went away within 6 months. Also my fatty liver and eczema, which I had for 33 years! 😁

Be well! Anag

[Aime]

hi, I have too many red blood cells, not on any meds and have a collection of smallish to medium lumps on my stomach and upper leg. I have had them checked and was told nothing to worry about, just lipomas. As Hunter says, it’s always wise to get them checked out but at least you know, you are not alone! Keep in touch. X😻

[Emmyroos]

I'm a bit lipoma lumpy since I was diagnosed with an MPN. I've had a few removed that grew quite large (especially during pregnancy for some reason). I had a large one on my thigh and a real honker on my shoulder. I now have a suspected lipoma along my rib. I asked my MPN doc if there is a connection and she was unaware of a lipoma and MPN link.

Continue to press the doc to get the lumps evaluated. Especially for peace of mind.

(interesting side note: I was also MPN diagnosed during my pregnancy with my second kid - what a shock that was!)

[bjay22 in reply to Emmyroos]

I have one right now in the same spot I had one 10 yrs ago - the back of my head. I remember the dr telling me if even a speck remains, it would grow back. And it did. Got so much stuff going on now, but I know I will have to get it removed eventually. I also was told if you gain weight, so does your lipoma. But if you lose weight, unfortunately your lipoma doesn't. Ugh, I hate these things so much.

[Jynx93]

I am also on Peg and have noticed a small lump has appeared on my thigh. Spoke to the consultant and he said it’s nothing to worry about and will check it in January at next appointment. Obviously like you I was worried. I have ET Jak2+ and he told me you don’t get lumps associated with either the condition or the treatment. I’m not so worried now

[Peachjoy]

hi Lena1992, I can’t relate to your lump occurrences, but I can understand your worry and concern. I would also want answers. Keep asking questions. It’s what we have to do all the time.

As Hunter5582 always advises, keep being pro active. We don’t want anything overlooked. Definitely chase up the results of your MRI. Whenever I’m tested for anything (including routine, non ET related things, I always make sure I get told the results, good to get the all clear from the horses mouth.👍

Hope you get your answers soon

[Miriammusic]

Like Hunter5582, I have lipomas. Some are hard and on my skull. The others are the soft, lumpy kind. I think there is definitely a connection between.

[Zeppelin11]

I agree with Hunter regarding your lumps. Any little change I would address. On a different note, I’m wondering if pregnancy has any correlation with ET? I was diagnosed a year after my son was born at the age of 32. Because this is a rare disease my Dr couldn’t tell me why or how I got it. But I have noticed a few young mothers on this message board.

[Emmyroos in reply to Zeppelin11]

Yep - same same here. Two years after my first child, my platelets started creeping up and so did the fatigue. Took a couple more years until someone finally wanted to look closer at my elevated platelets.

[Island-Lady]

I have been on Pegasys Interferon for around four months now. I was previously on hydroxyurea for 2 1/2 years. I got my first lipoma two weeks ago and because it was painful and right next to my spine I had it removed by my dermatologist. Sadly, after the removal it filled with blood which dried and she drained it again a few days ago. I am in the same situation again and I have to go in again not sure what to do. This time I try to play a hot pack at her suggestion and that has helped with the pain

The good news is that these are generally harmless unless they are painful in which case you can have it removed. My dermatologist biopsied it just to be safe and it came out negative.

it does seem unusual that so many of us would have lipomas. I am 71 and have never had this before.

[Island-Lady]

If you have a dermatologist and you were worried about it it would not hurt to have it checked and might ease your concerns.

Best of luck on your journey.

[light]

I would go back to my GP, who made referrals for MRI, Scan, etc., and ask GP to give you results from these referrals. Results from referrals, investigations have to go back to GP and GP have to give results to you. Good luck.

Wishing you well.

[Belltech1275]

I had ulcers forming on my ankle bones, so my doctor had to alter my Hydrea doze to 1000/500 alternating days.