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ITP and Swollen Lymph Nodes 2 years 2 months ago #69811

  • voltron03
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Hello all,
I'm a 39 year old male and I've had ITP for about 2 years now. It all seemed to have started after contracting hand, foot, mouth disease from my 3 year old daughter back in the summer of 2018 (at least that is my suspicion). Before that, I lived a very healthy and active lifestyle.

After coming to grips with the diagnosis, and learning to live with the ups and downs of ITP, I am now facing the possibility of a more serious diagnosis. I have recently noticed an enlarged lymph node in my right groin, and a tender lymph node under my left jaw. The lymph node in my groin has been slightly noticeable since the start of my ITP (disregarded and considered related to a flu I had at the time), but has become harder and larger in the last 3 months. . Recently I have aslo been experiencing symptoms such as night sweats, joint pain, fatigue and unexplained skin lessions. From my understanding (we are all guilty of doing too much internet research) the combination of these symptoms may suggest something like Lymphoma or Leukemia.

After an abdominal ultrasound it was determined that I had an enlarged lymph node of 2 cm in my right groin that needs to be tested through biopsy. I am currently awaiting a biopsy appointment. Blood testing for Lupus and Rheumatoid Arthretis have come back negative and my dermatologist has no clue what my skin lessions could be related to.

I would like to know if anyone has experienced a similar situation. What are the chances of the swollen lymph node being benign and my symptoms attributable to something completely different (and less serious).

Also, I am starting to doubt my initial diagnosis of ITP. When I first went to the emergency room with low platelets and bleeding two years ago, I had mentionned that I had flu like symptoms a week before, with a tender lymph node in the groin. No tests other than blood tests were done before the ITP diagnosis. Could they have got it wrong all this time and it was actually cancer from the beginning and ITP is a secondary symptom?

Many questions, lots of stress and worrying. Thank you in advance for your support during these trying times.

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ITP and Swollen Lymph Nodes 2 years 2 months ago #69817

  • poseymint
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Hello voltron, I hope you get that biopsy soon! Lymphoma has decent remission rates, earlier its caught the better of course.

Did your doctor ever examine your lymph nodes? It doesn't seem right that they would let you go for 2 years with an enlarged lymph node. My hematologist examines my lymph nodes every 3 mos and every time I see him he asks, " have you had night sweats, fever, unexplained weight loss, rashes?" He does a lab test called LDH that looks for disease/cancer activity. I'll tell you he is ALWAYS looking for lymphoma. I don't know if that is standard but it should be because low platelets can be a sign of low grade or indolent (no symptoms) lymphoma. He told me that Rituxin can be a good treatment for both ITP and indolent lymphoma. If you've never had rituxin, its a fairly safe and easy drug for most people. Its 4 infusions, one week apart. I had no side effects when I had it for ITP.

Thats all I know, but please find out everything as soon as you can. And make sure you have a responsive knowledgeable medical team. I'm sure you know all this, but I find that often a we have to take charge of our medical care and insist that the doctors do things quickly and properly. Good luck! Thanks for sharing
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ITP and Swollen Lymph Nodes 2 years 2 months ago #69819

  • MelA
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If you are doubting your diagnosis do you feel another opinion is needed?

I'd be getting that biopsy appointment asap - mainly because I wouldn't be able to stand not knowing what is going on!

Keep us posted - I hope your biopsy results are negative!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP and Swollen Lymph Nodes 2 years 2 months ago #69822

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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It would also be worth getting tested for TB as it doesn’t only occur in lungs.
Symptoms can include fatigue, night sweats, swollen lymph nodes and joint pains.
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ITP and Swollen Lymph Nodes 2 years 2 months ago #69828

  • JJ
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I've got lymphoma. If it's a slow growing non-hodgkins they often just monitor it until it's really necessary to treat. Then you get into remission and go back on watch and wait until it needs treating again. A faster growing more aggressive lymphoma would be treated with the aim of a cure. As for the skin, there are two types of primary skin lymphoma, B cell and T cell. They are completely different so treated differently. Also a systemic lymphoma could show in the skin as a secondary skin lymphoma.

Having said all that, lymph nodes swollen from lymphoma generally don't hurt but are painless. A tender node is usually from an infection. You might want to also see a dermatologist for a skin biopsy of the skin lesions. Good luck.
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ITP and Swollen Lymph Nodes 2 years 1 month ago #69979

  • voltron03
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Thank you all so much for your feedback! I wanted to update you on the situation.

Since first reporting my symptoms to my Hematologist, it has been a whirlwind of appointments and tests. He promptly referred me to an Oncologist to take charge of the testing and diagnosis, and promptly initiate treatment if required. I also had a CT and PET scan done. After some delays due to the Covid situation (staffing, testing, etc.), I finally had the biopsy done on the node in my groin. This was an experience in itself, worthy of a seperate post, especially considering our constant battle with low platelets.

Anyway, the biopsy results were negative, although the node that was dissected was quite big. In regards to the CT/PET scan, it indicated a second enlarged node under my jaw, measuring approximately 2 cm. I've had this node since August now but thought it to be related to a sore throat I had at the time. The scan also indicated some swelling of the thyroid gland.

I was obviously relieved that the biopsy was benign however, after the scan, my oncologist did not seem convinced I was in the clear. She told me that the symptoms are indicative of lymphoma but further investigation is necessary. A thyroid ultrasound was ordered and I believe they will eventaully want to do a biopsy of the node under my jaw.

So I still have a long way to go. Even if benign, I would really like to know what is causing the enlarged lymph nodes...and when I can stop worrying.

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