My Mom has just been diagnosed with Lymphoma.... what should I expect?

[My-Mom-Lymphoma]

I am new here. My mother has just been diagnosed with Lymphoma. Our first specialist appointment is Friday and just wondering what to expect. I am a bit overwhelmed right now and trying to be strong for her and inform my self so I know what I should ask when we go. Any help would be awesome..... We were told by the ER that we did not catch it early she has several lymph nodes that are enlarged and her Spleen is as well. She has been feeling really weak and trouble breathing. That is what brought her to the Dr. who sent her to the hospital cause she did not want my mom to wait for the test she had booked. ... thanks.

[dochall]

my wife had same T cell but after 8 chemos it is mostly gone . Have her eat 2 to 3000 calories a day . At first hard to eat but make smoothies . Mix protein with oatmeal and brad muffins/yogart every morning. Important to eat and feed the cancer. My wife lost a lot of weight at first but gained steady with protein diet. Deluxe trail mix and boost puddings mixed together the best and add the vanilla or chocolate ready made pudding. This is 650 calories in itself . Do not eat junk food other than butter tart every 2nd day. Positive attitude very important. Good luck

[ReneeSusan]

It’s important to know what type of lymphoma mom has as that will determine treatment. My particular type did not respond well to chemo but is now responding very well to Venetoclax. It’s also important to get her to a specialist to a hosptialwith a good blood cancer center. If you are on the east coast in the US. The Unicersity of Pennsylvania hospital has an excellent lymphoma/leukemia center. Mom will need more tests. Don’t give up hope. I have an aggressive form of lymphoma and I’m still here 9 years since being diagnosed. New medications/treatments are being developed every day. Please email me if you would like my doc’s info.

Renee

[lankisterguy]

Hi MML

You may be aware that this group is focused on only one Lymphoma- CLL, the most common of about 60 different lymphomas. Depending on which specific type your Mom has, the treatments and urgency to treat can be very different.

Here are some basic educational sources you can use until you learn more:

Here is an introduction/ overview of CLL and common terms- very easy to read and understand bloodwise.org.uk/info-suppo...

Or something similar as a white board animation/spoken dialogue: healthunlocked.com/cllsuppo...

If you do better with explanatory videos Start here:

patientpower.info/chronic-l...

Patient Power is a for-profit patient education website offers instructive videos and more on many health topics including several different Lymphomas.

Among those videos is my favorite "explainer" of lab tests & results - Dr. Susan LeClair

patientpower.info/series/as...

Len

[Sps82]

Hello

I am sorry to hear about your mums diagnosis. I am also a son to a Mum who was recently diagnosed with Lymphoma and I know how you will be feeling.

I think it is vital to find out which type of lymphoma your mum has been diagnosed with. I would write a list of questions you and your mum have and keep these all in one notebook so they are easy to refer to in the future.

Once you have had your first appointment hopefully you will have some answers and feel like you are getting somewhere.

I think it is important that there is always someone accompanying your Mum to all appointments because there is a lot to take in and some things can easily be missed. There are some very good sites but lymphomas.org is a good place to start for relevant information.

I wish you and your Mum all the best.

[Esther66]

I have lymphoma I’ve had it for just over a year! My spleen is now 15cm it was 10cm my platelets have drop to 56, I have enlarged nodes everywhere neck groin armpit, and stomach, I’m about to start R& B chemo 6 cycles twice a week every 4 weeks...

[Kvick]

Again, it is important to know the type of Lymphoma your mom has. There are B cell and T cell lymphomas. T cell is less common and has had less research done on it. However, that being said, they are making great strides with stem cell transplant and CAR-T therapies. Think positive and get as much information as possible. If you can, go to the doctor with her with a list of questions. It is also appropriate for your to record her sessions with the doctor. That way, she can share it with you later and you can help her do her own research. If this is a rare cancer I would advise her to get a second opinion. Please let us know how's she is doing . Hugs to you and your family, Kim