u/CrewAffectionate4185

My partner 29m has DLBCL and is on POLA RCHP. We have avoided crowds and seen friends mostly outside or small groups inside. He will be receiving round 4 on July 13. His very best friend is getting married July 24 weekend and he desperately wants to go (it’s local). They are basically brothers. It is a very large wedding - 250 people indoors. He has given up so much the past few months - skipped multiple other close friends’ weddings, trips with his friends and we even had to push out our own wedding and associated celebrations. This is the one thing he’s really hanging onto of wanting to attend. He has mostly handled treatment pretty well and has had normal blood tests prior to each treatment. Looking for non-judgmental POVs if anyone has attended (or skipped) anything similiar during treatment. I don’t even know how much a mask would be helpful in a crowd that large when nobody else is wearing one and he’s worried about “looking sick.” Obviously the smarter thing would be to skip and if he’s not feeling well that weekend the decision will be made for us, but thinking of weighing the mental health aspect as well. It just sucks to be dealing with this at such a young age!

My partner completed round 3 of 6 of POLA-RCHP for DLBCL. I think we both thought the half-way point would feel really exciting and like a big accomplishment, but instead feels like wtf he has to do this all again?! So many people have wished congrats on halfway through treatment, but it hasn’t felt as good as expected and I can feel him feeling more bummed. At the beginning of treatment his friends checked in a lot, but it has def trickled down as the newness has worn off. Round 3 also hit harder than 1/2 which hasn’t helped. Did anyone else feel this way half way through? Any tips on helping him push forward?

My fiancé 29m lost all the hair on his head right before round 2 into the first couple days of round 2 of pola-rchp. He just completed round 3 on Monday and has had some hair return. He has a patchy layer of very short hairs on his head. I thought they would fall out after round 3 but they haven’t. Additionally he is still shaving his beard (although it would come in patch) and hasn’t lost his leg hair, armpit hair, eyebrows or eye lashes. Is this normal? It makes me nervous it’s not working even though I know it’s likely not correlated.

In for round 3 today for stage 1E DLBCL with tumor at t11 on spine (bone involvement). The onc does not want to do a mid-treatment PET scan and only wants to do a mid-treatment MRI as she is worried the PET scan will be confusing due to potential inflammation. I hadn’t heard of anyone not getting a mid-treatment PET. They also want to do a ctDNA blood tests. We are at a large well-known hospital in a major city and def trust her, but hadn’t heard of this. curious if anyone has also not done one or has thoughts?

Posting on behalf of my fiancé 29m. He was diagnosed with chrons disease about 13 years ago and was put on Remicade after not having success with other treatments. He had been doing really well and in remission for many years. Sadly he was then diagnosed with DLBCL non Hodgkin’s lymphoma a couple months ago and will be halfway through his treatment tomorrow. As soon as he was diagnosed his GI took him off Remicade and the hope was his chemo would keep him in remission. He’s had some flare ups, but hard to tell if it’s his chrons or chemo side affect. As we start to think about life post-cancer (🙏🏼🙏🏼🙏🏼) in hopefully a couple months - curious what other medications people in a similiar situation have had success with? He won’t be able to go back on the biologic due to lymphoma risk.

My fiancé (29m) was diagnosed with chrons about 12 years ago. He was really sick until he started Remicade infusions. He’s been on them the past 12 years. He was diagnosed with DLBCL in mid-April and went off of Remicade as there is potential it may have caused his DLBCL. His doctor told him POLA RCHP should keep his chrons in remission. He’s currently between round 2 and 3 and hasn’t had Remicade since early April (used to be every 6 weeks). He’s starting to have symptoms that are very similar to what he had during his chrons diagnoses. We are going to reach out to his GI and oncology team first thing tomorrow. Curious if anyone else with chrons was taken off their medication for treatment? Or if anyone continued medication through treatment? I don’t know if he can go on remicade but we feel he needs something - it’s been getting progressively worse all week.

Hi all! Writing on behalf of my 29M fiancé who was diagnosed with stage 1 DLBCL mid-April. Prior to treatment he was having back pain which turned out to be caused by a 5ish cm tumor on his t12 and small nodule on t11. He has completed two rounds of pola-RCHP. He is still experiencing back pain especially on days he’s not taking prednisone. The doctor gave him tramadol which he takes most days (one time) and it really helps and fully relieves the pain. However I am nervous he is still even having to take it in the first place and that it means the treatment isn’t working. I know we’re only 1/3 in but have read things about people’s symptoms disappearing after 1/2 rounds. Is it possible to have pain as the tumor goes away? Has anyone experienced this?

The pain isn’t debilitating, he is able to walk and workout. It typically is worse later in the day after sitting a lot. Otherwise he’s been handling treatment really well and had minimal symptoms.

His team doesn’t want to do a scan this early into treatment and wait until after round 4. They said we can discuss more at his next infusion later this month and to let them know if it gets worse or he experience weakness (he’s not).

My fiance (29 male) doesn’t use Reddit so posting on his behalf. He was diagnosed with stage 1 DLBCL in mid-April. It was discovered due to persistent back pain in his left quadrant of his back - turned out there was a 5cm tumor at t12. He has completed two rounds of 6 of pola-RCHP with his 3rd in two weeks. So far he’s very lucky to have experienced minimal side effects, but his back pain is still persisting. They gave him tramadol which he takes about once a day, but not everyday - perhaps a bit over half the days. It’s making me so nervous it’s not working that he still has pain - any experience here?

My fiancé (29 male) was diagnosed with DLBCL. He has a 4cm mass near his t12 and a small nodule near his t11 on his back. His only symptom was back pain which led to a MRI. His DLBCL is only shown in those two areas on his PET scan and hasn’t spread and is not in spinal fluid. They considered it stage one for what that is worth. He completed his first round of Pola-RCHP Monday and so far isn’t have any symptoms outside of a bit more tired, but so far has been able to keep up walking and light weight lifting. I know this may change throughout treatment. His mental attitude has been mostly really strong so far and I want to match that or be there for him when he falls apart. I want to live a loooooong happy beautiful life together. I would love any words of encouragement or positive stories!!

Hi all! My fiancé is 29 male and was recently diagnosed with stage one DLBC lymphoma (discovered by back pain). It was really shocking as he is young, fit and healthy. He just had his first round of pola-RCHP yesterday and so far is feeling okay. He is really positive and has been handling this really well.

I am 28 female and have been mentally struggling. He had a scary passing out incident where I called 911 post-diagnosis pre-treatment that was chalked up to vasalvagal after many scans/tests, but deeply shook me. I want to be my best self to be there for him and feel badly I have been so anxious. We have a large support system which have been super helpful.

We were supposed to have the “happiest year of our life” getting married this October but have decided to push the big wedding given he’ll hopefully be finishing chemo late August and will need time to recover. This is a bit of a rant, but just hoping to hear from other young caregivers and any words of wisdom. We are the first people in our social circle to have gone through cancer or any kind of serious health condition.