Newly diagnosed

shelphel

Hello. I was just diagnosed with small lymphocytic lymphoma. I see a medial oncologist September 7th. I’m not sure what to expect. I’m not sure how to even feel about things until this appointment or even afterwards. Any suggestions or help. Especially with my anxiety! Thank you

po18guy

Sorry to hear this. Knowledge is power. There are several excellent resources regarding SLL. Note: CLL - Chronic Lymphocytic Leukemia is generally considered to be the same disease, except it occurs in the marrow, where it is called a leukemia. It is normally an indolent disease, which means chronic, which means you have the blessing of time to treat it, watch it and wait for newer, better treatments to arrive. Having had several cancers, they do not scare me. I view them as a challenge. A serious challenge, but a challenge nevertheless.

https://lymphoma.org/wp-content/uploads/2022/03/LRF_Factsheet_Chronic_Lymphocytic_Leukemia_Small_Lymphocytic_Lymphoma.pdf

https://www.lls.org/sites/default/files/2023-07/PS34_CLL_Booklet_2023.pdf

https://www.lls.org/leukemia/chronic-lymphocytic-leukemia

And for stress/anxiety:

https://lymphoma.org/understanding-lymphoma/coping-with-lymphoma/

https://www.lls.org/sites/default/files/2023-06/FF21_Mental_Health_0523_Final.pdf

So, chin up. You are certainly up to the challenge.

shelphel

https://csn.cancer.org/discussion/comment/1708534#Comment_1708534

I appreciate your input. I am planning on fighting hard! I appreciate being able to share with someone. We are waiting till the oncologist appointment before we tell family. Thank you!

po18guy

If they are offered, I most highly recommend clinical trials (I have been in 4). They are the only way in which medical science is advanced. Here is a link to SLL/CLL clinical trials - but they are offered only at certain centers.

https://www.clinicaltrials.gov/search?cond=SLL%20CLL&locStr=USA&country=United%20States&distance=50

As well, if you are in the US and if close enough, here are the centers which carry the National Cancer Institute "comprehensive cancer center" designation. Had I not gone to such a facility, I would not have survived past 2009.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

LynnDee

Omgosh I’m so excited to have found this. I was just diagnosed as well with follicular lymphoma. Just had my first Rituxan/Bendamustine treatment. The mental part has been so hard. I’m so scared. I will fight as hard as I can for my family, but this feeling after treatment can’t go away quick enough. I feel like I was hit by a truck. Is this normal?

po18guy

https://csn.cancer.org/discussion/comment/1708639#Comment_1708639

Sadly, yes. The side effects tend to be cumulative. But the therapy must be stronger than the cancer and we are the collateral damage in the war. However, we are resilient creatures and can adapt to almost anything. Many here have gone through multiple treatment regimens, radiation, biolspies and stem cell transplants. Yet all express some amount of contentedness with being alive. I, for one, am delighted to be anywhere. Hang in there! You are traveling through a tropical storm on the way to your vacation. Keep the destination in sight.

shelphel

Well my first oncology appointment was rescheduled because I have Covid. I’m scared and I want to get this process/treatment moving. I just don't know what to do or think.

po18guy

It sounds like your version of SLL is taking a more indolent course. Thus, even though it certainly seems to be, it is not an emergency. All types of lymphoma remain treatable at all stages, even the most aggressive sub-types. Having a viral infection only frustrates the process for a short while, but I understand the medical community's caution, as they are in close contact wit many patients (and eath=ch other) daily and so do not want to transmit the virus to those around them. SLL is a condition that you will probably have to live with, as it is chronic. However, it can be controlled and many, if not most patients go on to live a pretty normal life. Research is on-going and progress is being made against it on a regular basis.

shelphel

https://csn.cancer.org/discussion/comment/1708692#Comment_1708692

Thank you for making me feel better. The waiting is the hardest part. I’m just going to take these next couple of days to chill and relax. I’m glad I found this forum. Thank you!

po18guy

You are most welcome. My suggestion would be to read up on it and write questions down for doctor - we always forget when face-to-face. As well, the increasing hope provided by newer treatments can be quite reassuring.

shelphel

i agree. I’ve done some research and have some questions but since my diagnosis, which was basically the report from the biopsy through mychart app and a quick call from the ENT referring me to an oncologist, I know nothing. I’m so annoyed that I have Covid and my appointment is moved. I’m trying to stay positive and busy so my mind doesn’t get the best of me. I’m not good at patience (a work in progress) and not knowing is brutal! I hope you don’t mind me ranting. I appreciate your input and it’s nice to have a conversation with someone who understands what I’m going through.

po18guy

Well, I am the odd one out, but due to family histoy, I expected to have cancer at some point. And I was not disappointed! I have survived two T-Cell Lymphomas and a marrow cancer (MDS). All three simultaneously in 2015. So, is there hope? I thinlk so!

shelphel

Whoa! That’s a lot. I will continue to have hope and thank you for sharing your story.

shelphel

https://csn.cancer.org/discussion/comment/1708692#Comment_1708692

Had my first oncology appointment yesterday. Had blood work and will have a CT Scan of chest and pelvic area. So far the bloodwork that has came back for LDH is very high. I am scheduled to go back in a month for more blood work and a follow up. I feel slightly better since my appointment but the blood work results make me nervous. I am very happy with my doctor and hope to know more soon!