APS and Lymphoma. Newly diagnosed, need advice

[Piscesdreamer]

Hello everyone, I had an axillary lymph node biopsy and just found out that I have follicular lymphoma.

I am looking for guidance and advice from anyone who has this type of cancer.

Thank you ♡♡♡

[lupus-support1 Administrator]

I am very sorry to read this and it must be scary. I have SLE & Marginal Zone Lymphoma, a result of having an autoimmune disease. It’s similar in that it’s a CHRONIC condition. It’s very treatable which I hope your haematologist has explained to you. My diagnosis was the result of a bone marrow biopsy.

It is SLOW GROWING or indolent disease. Sometimes, you don’t need treatment but you will be monitored regularly.

I am sure your doctor has explained “Staging”: a PET CT to see where, or if there are tumors so they had treat it successfully.

We can live with this disease and treat it when necessary for many, many years!

If you want to talk more, please do!

With good wishes,

Ros

[Piscesdreamer in reply to lupus-support1]

Thank you Ros for your reply ♡

I am very grateful for reassuring words !

I am fearful that APS creating a hypercoagulable state will complicate my care or treatment.

The phone call from my primary physician yesterday was only a few minutes long. My doctor just told me that the biopsy result was back, that it was follicular lymphoma and they think it is stage 1 or 2.

I am guessing the next step is a pet scan to search for other enlarged lymph nodes?

I woke up this morning and started my research on Google and I am a little overwhelmed.

I am going to pick up the biopsy report today for more information.

About an hour after I received the call I sent in an appointment request at the Mayo Clinic in Jacksonville FL and also the Moffit Cancer Center in Tampa FL.

My mother cried when I told her the news, I live with her as her care taker while she recovers from hip replacement surgery and Thyroid cancer surgery.

I called my husband last night and told him. He is living 6 hours away with our kitties in our condo and continues to work. He let me know he is going to take a few days off and drive up to see me, I know it will make him feel better to see me ♡

I feel like I should make my diagnosis public, in hopes that friends and family can share any knowledge or experience they may have to help me navigate the road ahead.

I joined the Non Hodgkins Lymohoma Group and created a second post asking the community "if you could change any part of your diagnosis process or treatment plan, what would you change? What do you wish you knew then that you know now?"

♡ Irene

[lupus-support1 Administrator in reply to Piscesdreamer]

Dear Irene,

To be told over the phone is outrageous! I am NOT a medical doctor! However, if we have to have cancer, this is about as good as it gets because it's chronic.

Staging depends on what the PET-CT finds. If it is in 1 area, its stage 1. To give you an idea: my MZ lymphoma is "stage 4" because it's in the bone marrow. It's not a death sentence & "not serious" as would a malignant cancer would be. Depending on the results, your haemo-oncologist will treat you. I had x4 weekly Rituximab. You will have regular appointments and if you are free of tumours, no treatment will be needed after this one. It's watch & wait! Treatment is very successful.

You need to have this asap because the sooner you do, you will have the information & information is power.

Good - you joined the group & contact the Lymphoma organisation in the US.

You need your husband!

Anytime you want to talk, contact me.

With good wishes,

Ros

[Piscesdreamer in reply to lupus-support1]

Hello Ros!

After reading your reply I contacted the Leukemia and Lymphoma Society through their website. lls.org/support-resources/i...

I received a phone call from them this afternoon!!!

They provided me with so much great information tailored to the type of lymphoma and where I live. Sharon was wonderful!!!

They are going to mail an information package to me.

They also sent an email with so many resources - videos, websites, financial help, grants, transportation help....

I can call them any time with questions, even if it is just to vent or cry.

Everyone in the organization is knowledgeable even social workers.

I cannot thank you enough for sharing your story with me and suggesting I contact them.

♡♡♡irene♡♡♡

[lupus-support1 Administrator in reply to Piscesdreamer]

Dear Irene,

I wish you a full & complete recovery.

With good wishes,

Ros

[MaryF Administrator in reply to lupus-support1]

Thanks for the great information enclosed in this reply. MaryF

[Piscesdreamer in reply to MaryF]

Mary, I can copy an paste information from the email that the Leukemia and Lymphoma Society sent to me, if you think it would help someone.♡irene

[MaryF Administrator in reply to Piscesdreamer]

That is a good idea, then people can read it if they wish to. MaryF

[Piscesdreamer in reply to MaryF]

I just created the post with the info ♡

[KellyInTexas Administrator]

Thank you Piscesdreamer and lupus-support1 for sharing your journeys and their different points along the this time line.

The resources shared are gifts of the body, soul and mind.

I wish you all these gifts in abundance, Pisces dreamer, and our dear Ros.

Please continue to update us.