Diffuse large B-cell lymphoma (DLBCL): R-CHOP-14 or 21

Hello, @clea! I had DLBCL, but it affected another part of my body. I'm looping in @loribmt. She may be able to add some insight.

Hi @clea. (And thank you @emmiet for tagging me! ☺️)
This is a bit out of my area of experience but I am aware that
CA-125 test is a ‘tool’ healthcare providers use to measure if cancer treatment is working. If the results are positive, it’s standard for the doctor to order more tests as a follow up, such as a trans vaginal ultrasound, for your mom since her lymphoma is in that area. It sounds like your mom’s doctor is being very thorough.
Was this information on the portal and you and your mom are waiting for a consultation appointment?
How’s your mom coping with the cancer and the treatments?

In 2023 diagnosed with diffuse large b cell lymphoma. Went thru 6mo chemo, now in remission but left me with neuropathy in legs. Did you have that problem?

I also did R-chop for diffuse large Bcell lymphoma. I hadn’t made the connection to my chemo, as I had been taking many heavy duty meds at the same time, waiting to finish chemo so I could have much needed hip replacement surgery. I have had both neuropathy and restless legs and also trouble moving after laying or sitting which the doctors assume is neural. I’m hoping time and exercise will help, but will ask questions when I go in for my next checkup in April. Good luck to you. Chemo is hard on your body for sure.

@canart69 I am not sure my experience with R-Chop will help. I was diagnosed with Large B Cell Non-Hodgkin Lymphoma in 2019. It was stage 1, but it was an aggressive form of cancer. I was 67 at the time with no other health issues. In fact, all the tests I had prior to figuring out my diagnosis were met with questions like "I have looked at your medical history. There is nothing there. Why are you here?" But the biopsy did indicate cancer but more importantly, it had not spread yet. The only other issue I had was that the tumor, located along my hairline, had eroded the skull bone, exposing my brain. Further tests prior to starting my treatments indicated there was no cancer in my brain. Since it was such an early stage, my hematology team recommended R-Chop. I wound up with 6 treatments, each 3 weeks apart. In between, it was recommended that I have three separate in-hospital treatments of Methotrexate. The research I had done on Methotrexate scared me and I hesitated adding that part of the treatment. I did have all three treatments which was explained to me that it was just a precaution to make sure any lingering cancer cells were flushed completely out of my system. The R-Chop treatments were rough but, in the end, they were worth it. After 3 treatments, my PET scan showed the tumor was gone but I still continued with the three remaining treatments out of an abundance of caution. There were numerous side effects, most of which resolved themselves once I was done with my treatments. One of the side effects during my treatments was that I lost my voice. Once the treatments were completed, my voice returned but if I talk too much or too long, usually about 5 minutes straight, my voice becomes scratchy, sore, and I start to cough. I can live with that. I also had severe acid reflux. In my 67 years, I never even had so much as a mild case of heartburn. It was tough thing to treat since anything that would normally be prescribed for this would interact negatively with the R-Chop cocktail. But with the help of a pharmacist, they came up with a plan for me that worked. The other issue I have found is neuropathy in my leg following total knee replacement and, in my foot, following a bone fusion. That numbness has continued now, even 5 to 6 years after those surgeries, which were both following cancer treatment. Restless leg became an issue while doing R-Chop. What I find is that walking during the day helps a lot to limit, and usually eliminating, any trouble with sleeping at night. I am going on 7 years cancer free, or as my doctor tells me, I am cured of cancer. I am no longer at any more risk than the average person of a reoccurrence. If you trust your cancer team, they are going to do what they believe is the best course of treatment for you. I had a tremendous support system while going through my treatments. I have a cousin who is a nurse that I could talk to when I found myself conflicted about what decision to make, especially when it came to the methotrexate treatment. I did have to wait at least 6 months following my last treatment before my doctor would allow me to have knee replacement surgery. Honestly, that may be one question to ask your doctor. How long should you wait once you are done with your cancer treatments before having any other surgeries. Having trouble moving after sitting or lying down is another issue I have but for me, I think it is more about arthritis. Arthritis pain following my cancer treatments seems to be more intense. R-chop, from what I have researched, can damage nerve endings. Your difficulty moving after sitting or lying down may be normal, but exercise will help. Chemo is very hard, but the alternative is worse. If you trust your doctor, don't be afraid to ask a lot of questions. I have been so lucky to have a team of doctors, nurses, nurse practitioners, etc. that seem to want what is best for me. They have taken the time to answer all of my questions, listened to my concerns, offered a lot of good advice and suggestions, and allowed me to vent when I needed to vent. If you have the same relationship with your cancer team, trust that what they are suggesting is in your best interest. Hang in there and good luck to you.

@jmhwmt51 Thank you for sharing your story. It’s comforting to know one is not alone in having some of these symptoms. I WAS able to have my hip replacement surgery 3 months after my last R-Chop treatment. By then I had necrosis in the ball of my hip from the chemo and was in absolute agony despite opiods and narcotics that were prescribed in an effort to ease the pain until I could have the surgery. When the surgery was finally done, I was amazed that I could actually straighten my leg and take a step without pain. With a walker, I was able to walk over the hospital’s halls, much to the amazement of the medical staff—it felt so much better than it had.
As I weaned off the many heavy duty drugs I had been on, many side effects showed up like shaking, numbness, aching, restless legs and arms. brain fog, difficulty moving or straightening, back issues and several other minor issues. It was hard to sort out what caused what, and we may never be able to do that. I did have arthritis before chemo and guess that taking the many meds I was taking, probably masked pain I would have had without them. It makes sense that the pain would return when I quit them, and because time has passed, the conditions have worsened so pain is more intense. I’ve always had restless legs, and yes, walking has helped in the past, especially if I walk in the evening. It just got to the point where I have trouble sitting even through a meal, or a movie or traveling any distance or sitting through a church service. I take a low dose if gabapentin at night to help me sleep, but struggle sitting any length of time during the day. I’m not excited about increasing gabapentin but may eventually have to.
I was interested in your acid reflux. I have always had some—even have the head of our bed raised to help-but have had more struggles with it since chemo. I never connected it to chemo, but more the meds I took—could be either, but I’ll add it to my list of questions.
So glad to hear you are considered cancer free—hope you continue to be well and cancer free. I, by the way, love and trust my cancer team. They’ve been awesome every step of the way.

@canart69 I was so glad to hear that your hip replacement was successful. Not having that pain anymore is such an adrenaline rush. It makes a person feel like they can do anything. Coming off all the drugs will definitely have some side effects. I just kept reminding myself that it will be over soon. I have also used nutrition while weaning off the drugs. I am riddled with arthritis all over. Exercise and just plain moving helps alleviate that pain and stiffness. But certain foods are anti-inflammatory. I try to stay away from the things that cause inflammation. It doesn't take away all of the pain, but it does keep it manageable. Of all the side effects I had while going through my chemo, it was the acid reflux and losing my voice that seemed a bit concerning to my hematology team. It is not unheard of, but it is also not a common side effect. However, since my treatments, I have heard of several others who also have lost their voice and also had increase heartburn during their treatment with R-Chop. That particular side effect for me seemed to be rather extreme. Once my treatments were done, I have not had another episode of heartburn, but my voice never did come back to where it was before chemo. It has improved to a point that I can live with. I hope you, with the help of your doctor, can get some relief from any of the side effects that you are still experiencing.

@msdoss in 2023 I was diagnosed with stage 4 diffuse large b cell lymphoma. Went thru chemo. Dose cut down because I was 80. It worked but gave me neuropathy in both legs. I say go for it. I am now cancer free. Have faith

@canart69 hang in there. Sending prayers

@bindylp Thanks for all your help and suggestions. I seem to have to whine sometimes, but mostly am doing well, trying to take care of one issue at a time. I exercise daily, try to eat well and avoid sugar and/or processed foods, get plenty of rest and maintain relationships. Prayers are always good. Doing my best to hang in there. God bless yoy!