New to the group. Any one has Primary Intraocualr Lymphoma?

Jessica P.

Hello, My mom (61 years old) was diagnosed with Primary intraocular lymphoma in early February 2014. Primary intraocular lymphoma is lymphoma in the eyeball, and considered as CNS lymphoma. She has diffused large B-cell type lymphoma in her right eye only. Her brain MRI and chest, abdominal, and pelvis CT scan came out clean, and her lumber puncture result came out also negative.

She started local radiation treatment in her eyes last week. Her doctor wants to do local treatment only (12 radiation treatments) even though the replase rate to her brain is 80~90%, then want her to follow up every 3 months.

My family was uncomfortable with the fact that the doctor won't give her any preventative treatment for relapse, so we went to several other hospitals to seek second opinions.

One of the doctor we met advised that there is way to reduce relapse rate by giving her systemic chemotherapy using Metrotraxate and Rutuximab, but the other doctor agreed with my mom's doctor that giving her systemic chemo will not reduce relapse rate, and there is no preventative treatment. He said giving her systemic chemo will just add toxicity in her body.

 

So now we are in dilema whether my mom should receive systemic treatment or just wait for her CNS lymphoma to relapse.

Doctors said this is very rare cancer, so there is not enough study to set standard treatment for this. It's very hard for us to decide which treatment to go for.

Any advice would be greatly apprecitaed.

 

 

Max Former Hodgkins Stage 3

Rare

Jessica,

Sorry you have this worry with your mom's health. I believe that caregivers often have a harder time than we who have the disease. I am certain that my wife had it rougher than I did, given that I mostly spent all day every day in bed.

I am curious about one thing you say the doctors told you:  If the disease is too rare for profession-wide treatments to be agreed upon, how can it be common enough for them to have exact numbers on its relapse rate ? These two assertions seem to not logically fit together.

Many cancers, of course, are very rare, and it is not uncommon to be in her situation: The very rare forms of lymphoma (there are over 30 lymphoma strains) do not get the research that the more common strains do.  Doctorrs cannot agree over whether my lymphoma is even a form of HL or NHL; it has gone back and forth over the decades between the two, and currently is considered HL.

Logistically, perhaps the best you can do is get one additional opinion, and see which of the previous doctors the third agrees with. Demand to know WHY .  Most stage 1 lymphomas are treated with just radation, but there is no track record as to whether that is best given the rarity of her disease, and some of the more aggressive forms do get treated with chemo, even at stage 1.   Ultimately, you have to go with the doctor you most trust.  Sixty-one is not really that old for receiving chemo, if she is otherwise in good health, and depending on which drugs she might receive.

I have heard two or three people here discuss lymphoma in the eye over the last year or two, and hopefully they will chime in .

max

Rocquie

Welcome

Hello Jessica and welcome to the group. I am very sorry your Mother has been dianosed with Lymphoma, but please know Lymphoma is very treatable.  Like Max, I have also seen where other people have mentioned CNS and Eye Lymphoma at this site. Maybe you could do a search of the site which is very easy.

You stated that your Mom does not have lymphoma in her brain, yet she has "a relapse rate to her brain of 80-90%". Maybe I'm not understanding but it seems to me that if she does not have lymphoma in her brain in the first place then it can't relapse. Do you mean that the chance of recurrance to her eye is a high percentage? And that it could spread to her brain? 

You also say you are in a diliemma of whether to have systemic treatment or wait for her lymphoma to relapse. Those are not the only possible outcomes. Remember, your Mom may be treated with radiation and be in the percentage that never relapse. 

What does your Mom want to do? Remember this is her decision.

I know you must feel very scared. A cancer diagnosis is very scary and you naturally want to know if your Mom is going to be OK. Try to be strong for her and remember Lymphoma is very treatable, even if it does relapse.

Hugs and prayers to you,

Rocquie

 

 

Jessica P.

Max Former Hodgkins Stage 3 said:

Rare

Jessica,

Sorry you have this worry with your mom's health. I believe that caregivers often have a harder time than we who have the disease. I am certain that my wife had it rougher than I did, given that I mostly spent all day every day in bed.

I am curious about one thing you say the doctors told you:  If the disease is too rare for profession-wide treatments to be agreed upon, how can it be common enough for them to have exact numbers on its relapse rate ? These two assertions seem to not logically fit together.

Many cancers, of course, are very rare, and it is not uncommon to be in her situation: The very rare forms of lymphoma (there are over 30 lymphoma strains) do not get the research that the more common strains do.  Doctorrs cannot agree over whether my lymphoma is even a form of HL or NHL; it has gone back and forth over the decades between the two, and currently is considered HL.

Logistically, perhaps the best you can do is get one additional opinion, and see which of the previous doctors the third agrees with. Demand to know WHY .  Most stage 1 lymphomas are treated with just radation, but there is no track record as to whether that is best given the rarity of her disease, and some of the more aggressive forms do get treated with chemo, even at stage 1.   Ultimately, you have to go with the doctor you most trust.  Sixty-one is not really that old for receiving chemo, if she is otherwise in good health, and depending on which drugs she might receive.

I have heard two or three people here discuss lymphoma in the eye over the last year or two, and hopefully they will chime in .

max

Thank you Max

Thank you for the reply Max.

We have met five doctors so far, and they all told us that most of cases intraocular lymphoma relapse to brain. Some doctor said 80% and some said 90%. 

Doctors also told us that there is no known best treatment for this kind of lymphoma because there aren't enough study due to rarity of primary intraocular lymphoma.

 

I agree with you that we will have to find the doctor we can trust most. We will seek for more second opinions.

Hopefully, we can find the one.

 

Thank you for your advice.

 

 

Jessica P.

Rocquie said:

Welcome

Hello Jessica and welcome to the group. I am very sorry your Mother has been dianosed with Lymphoma, but please know Lymphoma is very treatable.  Like Max, I have also seen where other people have mentioned CNS and Eye Lymphoma at this site. Maybe you could do a search of the site which is very easy.

You stated that your Mom does not have lymphoma in her brain, yet she has "a relapse rate to her brain of 80-90%". Maybe I'm not understanding but it seems to me that if she does not have lymphoma in her brain in the first place then it can't relapse. Do you mean that the chance of recurrance to her eye is a high percentage? And that it could spread to her brain? 

You also say you are in a diliemma of whether to have systemic treatment or wait for her lymphoma to relapse. Those are not the only possible outcomes. Remember, your Mom may be treated with radiation and be in the percentage that never relapse. 

What does your Mom want to do? Remember this is her decision.

I know you must feel very scared. A cancer diagnosis is very scary and you naturally want to know if your Mom is going to be OK. Try to be strong for her and remember Lymphoma is very treatable, even if it does relapse.

Hugs and prayers to you,

Rocquie

 

 

Thank you Rocquie

Rocquie,

Thank you for warm welcome and advices.

I found some post about CNS, but not primary intraocular lymphoma even though they are very closely related. I will try to search more and hopefully find someone with good outcome.

 

I'm sorry I didn't make my statement clear and make you confuse. According to what doctor told us, intraocular is part of CNS. If her disease replases most likely it will be in her brain. As far as I understand, eye tumor won't be spread to brain, but another tumor will be created in her brain.

I heard many kind of lymphoma are treatable and curable, but because it's brain cancer I think that's what make my family more scare.

 

Thank you for the prayer.

This discussion board and lymphoma group is really big help.

Suri16

My Mom is newly diagnosed with ocular Lymphoma - Pls Advice

Hello - My mom who is 70 years old have been diagnosed with Ocular Lymphoma too

We do not know subtype as Biopsy could not verify that. Only know it is Lymphoma. It is bilateral in both eyes. She has had floaters and uveitis for almost 1.5 years and has been treated with Steroids, ImmunoSuppresents for a long time with no improvement.

Finally they did a right eye Vitrectomy and biopsy and we found out there is Lymphoma in both eyes. Vitrectomy with biopsy was done in right eye.

She has had a pet-scan and MRI Brain which was all clear. She also had a spinal tap (CSF) which is ok.

 

We have met several doctors some suggesting IV chemo methrotrexate while ocular oncologist is suggesting only intravitreal Methrotraxate shots in eyes.

 

Please advice. Anyone who has had similar experience. My mom is also diabetic and v thin.

 

What has worked for someone and thier doctor advice. We are delaying treatment as totally getting differeing treatment options given the rare disease.