Anyone develop orbital lymphoma? 👀

[Beeupfull]

Over one year ago, out of the blue my eyes got all red with big veins and a creepy look inside lids, blurred vision and severe headaches. My previous hematologist said it’s not related to my CLL/SLL, go see your primary doctor and eye doctor. I bounced back and forth and after a year found a new clinic who diagnosed orbital lymphoma and say it’s rare and aggressive but cannot treat it, aren’t familiar with it, it’s in my optic nerves, central nervous system. They just call me interesting and keep having me do scans and labs. I’m pretty scared, I don’t know what is going to happen.

xo

[Living_and_Learning]

I don't have any experience with this, so I can't really help, but I wanted to reach out to say that I'm so sorry this is happening.

[Beeupfull in reply to Living_and_Learning]

Thank you for your kind words xoxox

[JoannG]

Yes. It happened to me about 10 years ago. My eye wouldn't stop tearing and finally my Dr scheduled a scan followed by a biopsy performed by an ophthalmic surgeon. The lymphoma however was not in my optic nerve. I was treated with daily radiation for 2 weeks and have not had a recurrence.

Although it was scary at the time, it all ended well. My Dr did believe it was absolutely related to my CLL.

[Beeupfull in reply to JoannG]

I’m sorry you had to go through it, I’ve been suffering while it spreads further into my central nervous system. Whole brain radiation would do me in, I’m not fit to withstand

[Stamphappy]

Beepupfull, I don't know what country you are in or if that makes a difference with this issue. I am in the USA. From what I see online, treatments are available depending upon your stage of involvement. Please, keep advocating for yourself until you are confident with your doctor. Blessings to you.

[Beeupfull in reply to Stamphappy]

I’m in Arizona and I’ve seen everyone here, wish I could move but can’t afford to.

[Veggiesaredelish in reply to Beeupfull]

MD Anderson? How far is that from you? Could You fly in? Sending positive, healing prayers.

[Phil4-13]

Beeupfull, I'm not familiar with that. I want to send you best wishes and hope you find a doctor who will look up on this and a treatment possibility very soon. I bring things I research to my doctor. He listens and applies what he decides is appropriate. 😊Sandra

[Beeupfull in reply to Phil4-13]

My doctors aren’t accustomed to this presentation and are just doing tests, saying their treatments are too too toxic.

[PaulaRichmond]

prayed for your healing.

[Orangecat1 in reply to PaulaRichmond]

If in US the Mayo Clinic in Jacksonville has a team of specialists in lymphoma/ leukemia. I would look for a major medical center closest to you

[Beeupfull in reply to Orangecat1]

I’m near Mayo in Scottsdale but they don’t accept Medicaid

[Phil4-13 in reply to Beeupfull]

Beeupfull, Stamphappy's suggestion to contact the CLL Society online is excellent! 😊Sandra

[Beeupfull in reply to PaulaRichmond]

Thank you Paula, my prayers for you too 🙏🏼

[Stamphappy]

Check into the FREE CLL EXPERT available online through the CLL Society. Perhaps they can give guidance to your local doctor or direct you to someone nearby and willing to work with your case??

[Stamphappy]

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