Hello all, one of my best friends was recently diagnosed with T cell lymphoma. We do not know anything else right now. She has another appointment tomorrow to find out the results of her bone marrow biopsy and CT scan. What questions should we be asking? She will be starting chemo very soon. Is there certain foods she needs to avoid or foods that will help her? What advice can any of you give to help us through all this. She is only 41 , has a 7 year old, a great hubby and a huge support group of friends....we just don't know what to do. We have done the basics of meals, driving etc but we are looking for further help and info Thanks Richelle
Schmelz--
To begin, "T cell lymphoma" is not really a diagnosis. It's not specific enough. non-hodgkin lymphomas are either T-cell or B-cell, but from there, there are over 60 types of DIFFERENT cancers.
So, 1- Ask for a specific diagnosis. For example, that might be "Anaplastic large T-cell lymphoma ALK+".
2. STOP! People are often rushed into chemotherapy when you should be presented with all your options. I'm not saying there are many beyond chemo or radiation or whatever, i'm just saying that nobody should feel pushed into treatments.
3. Did she have an excisional biopsy? If not, then she has not been properly diagnosed. Furthermore, T-cell lymphomas are EXTREMELY difficult for pathologists to diagnose, they make mistakes often (read my article on the topic HERE). A second opinion on biopsy results is an ABSOLUTE MUST..
Hi, def make a list of questions and if she can have her spouse bring the list with a note book to write down comments by the doctors. This is a new and scary road and she is still dealing with the shock of it all, and like the rest of us will think of 100 questions after we leave. And thats okay too, also write those down. I went from DX of diffused large B cell, set up to start Chemo right away, had surgery for a port for the chemo, bone biopsy for more info, feeling like I was on a run away train when my husband insisted we need a second opinion. All the test and biopsy were redone and reread and they showed very few diffuse large B cell, and the DX was changed to SLL which is a slow growing, incurable Lymphoma that is so slow I may never need chemo. I am on what is called "Watch & Wait" and I am scan every 3 mons. to see if there are any changes. As a patient you feel embarassed to seek a second opinion, as if it means you don't trust your doctor, but thats not it, it means the more eyes the better. Doctors will tell you to always get a second from a facility that specializes in the suspected type of cancer. I have not had to use my port yet and I get it flushed every 5 weeks, which is fine because it reminds me of fortunate I am to have gotten that 2nd! Good Luck and let her know about this site. Also the "Caring Bridge.com" site is a great site for people dealing with serious medical issues and want a main place to provide family and friends with updates, plus it's free. They walk you through setting up your own place where she can leave posts, photos, etc. that family and friends can check in on to see whats happening, leave messages etc. That way she won't have to repeat the same info over and over.
It will be very helpful for her to read the supportive posts as she deals with all of this. It also makes the family, esp the children feel good to read about others caring and praying for their mom or dad. God Bless!
Thank You!!! very good info
Sorry, it's Caring Bridge.org not com. Best of Luck!