is this what we actually need?

[rokis]

Hi everyone!

I have recently been diagnosed with Sjogren's, and I am currently under investigation for lymphoma... given that I am in my late 20s, and have been dealing with two other autoimmune diseases since my early 20s, at times I find all these diagnoses/symptoms difficult to cope with. So how's is everyone doing?

Also, I shared my concerns with a friend and she redirected me to this company, and thinks it's worth having a look. I'm sharing it with you too, perhaps some of you might find it useful..

mailchi.mp/20f37ca2d14e/hol...

[Piscesdreamer]

Hello Rokis!I have autoimmune disease and was diagnosed with lymphoma this past October. Hopefully you will not join the lymphoma club, but if you do, I wanted to make sure you knew about The Luekemia and Lymphoma Society (lls.org) and the Lymphoma Research Foundation (lymphoma.org). When I was first diagnosed I signed up at both websites and in less than 2 days a lymphoma social worker from LLS called me personally for more information. A week later I received a box of full of information books. Including financial assistance, a book with medical definitions, treatment options, you name it. VERY helpful!!!

♡irene

[rokis in reply to Piscesdreamer]

oh wow, thank you so so much Irene!! This is so useful. I have a feeling that I am going down the lymphoma route, so I will definitely check it out. If you don't mind me asking, how have you been coping with the diagnosis? And how are you feeling? x

[Piscesdreamer in reply to rokis]

Ironically I feel the best I have in years. My autoimmune is very well managed. I have indolent (slow growing) follicular non Hodgkins Lymphoma. There are 60 types of non Hodgkins Lymphoma so we are all unique. Hodgkin lymphoma is completely different - it is diagnosed by finding Reed Sterburg cells in the biopsy. If you do have it, it is important to not get freaked out about a few things. The staging. It is different than all other cancers. Stage 1 is lymphnode(s) on one side of the body. Stage 2 is lymphnodes on both side of the body. Stage 3 is lymphnodes on both sides and above and below the waist. Stage 4 is lymphnodes right and left, above and below the waist and outside your lymphnodes. Staging has nithing tondo with survival rates. Do not look at survival data, it is very outdated. Lymphoma is "treatable". You MUST see a lymphoma specialist as regular oncologists and hematologists often times rush to treatment or overtreat. The specialists look at Lymphoma as a chronic condition like diabetes. I am on watch and wait and will remain on watch and wait until one of the following happen:

- I get what is called "bulky" disease where the lymphnodes are so big that they cause low quality of life or put pressure on something like an artery.

- I start having "B" symptoms which are sever fatigue, drenching nightsweats, etc

- it transforms into an aggressive form

I hope to he on watch and wait for as long as possible!

There have been significant advances on treatment options in the last 2 years and I am following people in clinical trials in the Facebook support groups.

Exercise, walk, move your body if you can. It helps!!!

♡irene

[rokis in reply to Piscesdreamer]

hi Irene,thank you so much for your tips, and I am glad you feel okay.

I have been educating myself on NHL ever since my pulmonary embolisms, tentative APS diagnosis and enlarged lymph nodes (which have been palpable for the last 4 years).

I do suspect that cancer might be on the table, and I'll try to push for a biopsy.

Hopefully you'll stay on watch and wait for the longest time, as I very much hope so.

Do you think that a cancer diagnosis has somehow changed your outlook on life and your body?

[Piscesdreamer in reply to rokis]

I too have APS and UCTD.Yes, I will always check my emails for notifications when you reach out to me on this thread!

[rokis in reply to Piscesdreamer]

thank you so much, honestly! I will definitely reach out again. All the best!!