I think the most part of going through cancer therapy is your loved ones being helpless to watch someone they love suffer. My husband has just been diagnosed with DLBCL the first week of October, 2024. He had a biopsy done. The doctors found d a mass on his spleen a bout 2 weeks later we got the pathology report. Then he had a CT scan and found out that some of the cancer was in the thymus area. The wall between the lungs and heart. He had an echocardiogram. His first treatment starts on Monday. Hoping he will be ok. We’re in this together.
So valuable to tell this story. Survivors rarely recount their experiences and yet these chemo experiences (and all of what ‘cancer’ personally means to them) are so impactful in their lives. Valuable for others who share a similar story. Thank you. The support one gets from loved ones, medical staff and faith in God cannot be underestimated.
My second bout with lymphoma. But Im NLPHL, (not DLBCL). Been told I'll be getting R/CHOP. Worried about doxorubicin, because I had Hodgkin's 20 years ago and I got it with ABVD. Its apparently very toxic to the heart. Ive also had a autologous stem cell transplant in the past as well and getting my vitality back was a grind. Im also 20 years older....we will see.
My little brother was diagnosed July 4th 2023, initially the tumor was found near the pancreas.. soon it had spread all over his body including his spine. He started with chemo to the spine and then the next lumbar puncture showed that it had cleared but then it came back again. More spine chemo was given then it was cleared, after that it came back again as it was found in the spine... fast forward to around Thanksgiving he began with blurry vision and headaches. They continued with chemo to the spine, but around Christmas he had to seizures and at that point we found out that it had spread to his brain. They started on heavy chemo and as of today he has regained some eyesight and his oncologist suspect that it has cleared in his spine and brain however they suspect that it has spread throughout his body again. Its a very scary time for him, for us... but he keeps fighting.
Hi, we’re with you! Thank you for the information! My husband just has been diagnosed with cancer, lymphoma. We’re waiting for the biopsy to be scheduled! His condition is terrible… I mean how emotional he is… your video is priceless… thank you
Viktoriia, so sorry to hear about his diagnosis - glad Luis story was helpful. His entire story is also here: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/diffuse-large-b-cell-dlbcl/luis-v/ Thinking of you and your husband. -Stephanie
Victoria, I have been where your husband is right now, and I can say there is a future ahead where he will not be as afraid. There are legitimate grounds to be very hopeful in lymphoma. The pace of research and of new drugs in actual clinical use is truly astonishing. Hang in there.
I´m going to get 1. course of methotrexate in late September for a diffuse large b-cell lymphoma in both sides of my face. I've been a bit hesitant about this part of the treatment because I hate being hospitalized and the knowledge about the effect of treatment is still lacking. But since my R-chop has just brought me to at Deauville score 3 (I know its still considered okay) I've decided to get the methotrexate anyway just to be on the safe side. So nice to hear that the side effects do not have to be that serious. I´ve been fortunate to have few side effects of R-chop.
Cancer fatigue sucks!! It’s literally soul deep. I couldn’t even do my dishes during my first month of treatment. Also- I am so glad you talked about staying moving!! It’s been huge for my journey.
Again, I apologize for the time to reply. Moving is crucial. Use it or lose it becomes mandatory for us cancer folk. I do Brazilian Jiu Jitsu, and it keeps me sane.
Thank you for this series. My mom just diagnosed with non hodgkin lymphoma B cell stage 4. About to start on RCHOP as well but she had heart problems & active infection so the doctors have to adjust the regime to suit her. Im just clinging onto hope that she’ll respond to treatment and her body could process the postchemo cell lysis.
I’m with you guys ! The doctor first discovered a tumor in my belly that was growing on November 13, 2021. Fast forward to now. I just completed my 3rd infusion R-Chop treatment at the VA Seattle Cancer clinic. No problems ! No side effects whatsoever. In fact it was like going on a vacation. The first two treatments however were a bit more problematic …, but I survived. The first month of my journey I lost 40 lbs! And my lower body swelled up! Basically, life was no longer desirable. I wanted to die. But the collective energy of the doctors, nurses, nurse’s aids and staff support kept me going and brought me back to health against my own judgment. They were amazing. Of course prayers helped too. I have a portal on my right side upper chest area. Fatigue comes and goes. I didn’t feel tired or fatigued while undergoing the 3rd cycle. In the first two cycles, more physical activities did not help. I was like Luis, I didn’t want to do a thing but lie in bed. But after the 3rd cycle, I wanted to exercise…, and I did! I didn’t want to lay around and do nothing. I didn’t experience diarrhea! Constipation yes! I resolved it by exercising and drinking Orange and prune juices. I don’t know if this is a side effect or not but I am urinating constantly … almost every hour! Wasting away ??? Yes I saw that I was wasting away. But everything changed after the 3rd infusion cycle. I started to gain weight.. my appetite had returned and the food tasted normal again! My second PETScan also showed tremendous improvement as compared to the first PETSCan. In the second PETScan, the cancer markers that were all over the place in the first PETScan all but disappeared! The doctor and I were very pleased. However, he did notice something on my left lung. It could be something or it could be nothing! We won’t know until a third PETScan is done in three weeks.
@@sheloshelo4884 Not good ! Chemotherapy didn’t completely eradicate the cancer. I’ve two tumors growing : one in my left chest near the sternum the other on the right side of my back. I’m going through immunotherapy right now and then in a few weeks going to do CAR-T at SCCA/UW ! It sucks !!!
Thanks for all that you do because I learn a lot from your stories. I have non-Hodgkin's follicular lymphoma and I learned about what the Deauville Score means and I had no idea. I had a PET scan after my chemo treatments and when I just now checked to see my score it's a 2 but I didn't know what it meant and no one told me I was in remission so the number 2 is a good number? I believe Luis said 1 and 2 were excellent so now I feel better about it.
Jan, I am so glad to hear that the stories have helped! Deauville score is so tricky. I personally went through it again, too, trying to understand it. This is not medical advice, but in experience sharing, the way it was explained to me was 1=A+, 2 =A, 3=A-, 4=C, 5=F. Again, always check with a medical professional for personal results, but I hope that's generally helpful! -Stephanie
I have finished r chop The last treatment was the worst and I’m still having bowel issues but I am getting better and they found no cancer and I’m 83 years old so I expect a few more good years to give back some love that I have experienced
So I am starting my R CHOP treatment this Wednesday. I will be having 6 treatments with 3 weeks apart from each session. My lymph nodes are aggressive, so this is the reason I am having 6 treatments. I only found out 3 and half weeks ago that I had lymphoma on my neck. Luckily, nowhere else. My question is. Did you lose your hair. By the looks of it, everything is smooth for you both thank God
@@luisvera5362 Thanks for the update! My prognosis was similar to yours - Stage 4a, double expressor. I went through 6 cycles of R-EPOCH 21, and I'm in the process of completing 4 cycles of High dose methotrexate (there was no CNS or bone marrow involvement for me, but my doc recommended this as a protective course) My PET was a deauville 1 as well. I'm 37 and have way too much life left to live. Your videos definitely helped....thank you!
When you have that much diarrhea, you are dehydrating yourself for every ounce you lose in the stool, you're losing in liquids. How did you stay hydrated? Did you just have to drink a lot of water constantly?
Sorry so late to reply! I don't always get notifications. I used saran wrap and painter's tape, and tried to make sure the stream of water did not hit me from the top down on that arm.
My brother has recently digonoses with six cycle of rchup in fourth cycle of rchup the petsscan 95% ok mean he is in complete remession and now the doctor has start 2 more cycle of rituxumab and he says that is good can any one tell me that why he do this he says that if u can afford then it is good
Yes! This was inspiring and helped me and my adult son because there are alot of types.Seeing the exact thing,BCell lymphoma 4 was what we needed to see.Thank you for the channel and Louis thank you.
The one difference is my hubby just sleeps but he just got his at home meds a day before first RCHOP.I have to get a wheelchair as soon as we arrive so don't know how Louis went by himself.I let Dave twice for Electocardigram and the Education part big mistake because he wasn't even wanting to communicate,was hard to talk,etc. Got alot of info. confused which is why I have been with him with all app.besides those 2.Any add.ingo from Louis would be sppreciated.
I think the most part of going through cancer therapy is your loved ones being helpless to watch someone they love suffer. My husband has just been diagnosed with DLBCL the first week of October, 2024. He had a biopsy done. The doctors found d a mass on his spleen a bout 2 weeks later we got the pathology report. Then he had a CT scan and found out that some of the cancer was in the thymus area. The wall between the lungs and heart. He had an echocardiogram. His first treatment starts on Monday. Hoping he will be ok. We’re in this together.
I think the most part of going through cancer therapy is your loved ones being helpless to watch someone they love suffer. My husband has just been diagnosed with DLBCL the first week of October, 2024. He had a biopsy done. The doctors found d a mass on his spleen a bout 2 weeks later we got the pathology report. Then he had a CT scan and found out that some of the cancer was in the thymus area. The wall between the lungs and heart. He had an echocardiogram. His first treatment starts on Monday. Hoping he will be ok. We’re in this together.
So valuable to tell this story. Survivors rarely recount their experiences and yet these chemo experiences (and all of what ‘cancer’ personally means to them) are so impactful in their lives. Valuable for others who share a similar story. Thank you.
The support one gets from loved ones, medical staff and faith in God cannot be underestimated.
My second bout with lymphoma. But Im NLPHL, (not DLBCL). Been told I'll be getting R/CHOP. Worried about doxorubicin, because I had Hodgkin's 20 years ago and I got it with ABVD. Its apparently very toxic to the heart. Ive also had a autologous stem cell transplant in the past as well and getting my vitality back was a grind. Im also 20 years older....we will see.
My little brother was diagnosed July 4th 2023, initially the tumor was found near the pancreas.. soon it had spread all over his body including his spine. He started with chemo to the spine and then the next lumbar puncture showed that it had cleared but then it came back again. More spine chemo was given then it was cleared, after that it came back again as it was found in the spine... fast forward to around Thanksgiving he began with blurry vision and headaches. They continued with chemo to the spine, but around Christmas he had to seizures and at that point we found out that it had spread to his brain. They started on heavy chemo and as of today he has regained some eyesight and his oncologist suspect that it has cleared in his spine and brain however they suspect that it has spread throughout his body again. Its a very scary time for him, for us... but he keeps fighting.
he will be okay ❤️❤️❤️❤️
I just read this I'm so sorry how is he now?
My little brother passed away back on February 15th. He fought hard but it was too aggressive.
Hi, we’re with you! Thank you for the information! My husband just has been diagnosed with cancer, lymphoma. We’re waiting for the biopsy to be scheduled! His condition is terrible… I mean how emotional he is… your video is priceless… thank you
Viktoriia, so sorry to hear about his diagnosis - glad Luis story was helpful. His entire story is also here: www.thepatientstory.com/cancers/non-hodgkin-lymphoma/diffuse-large-b-cell-dlbcl/luis-v/
Thinking of you and your husband. -Stephanie
Victoria, I have been where your husband is right now, and I can say there is a future ahead where he will not be as afraid. There are legitimate grounds to be very hopeful in lymphoma. The pace of research and of new drugs in actual clinical use is truly astonishing. Hang in there.
@@luisvera5362 thank you 🙏 for your response and support and hope! We’re praying
Waited all day for this… it’s fascinating and stirs up so much memories and emotions can’t wait for part 3 thanks
Thank you, Rich!
I´m going to get 1. course of methotrexate in late September for a diffuse large b-cell lymphoma in both sides of my face. I've been a bit hesitant about this part of the treatment because I hate being hospitalized and the knowledge about the effect of treatment is still lacking. But since my R-chop has just brought me to at Deauville score 3 (I know its still considered okay) I've decided to get the methotrexate anyway just to be on the safe side. So nice to hear that the side effects do not have to be that serious. I´ve been fortunate to have few side effects of R-chop.
Aloha Luis!! I just got a complete remission after my final pet scan!!!
Which disease u was diagnosed
Thank you. Get through as you go through….sums up the whole ordeal…
Cancer fatigue sucks!! It’s literally soul deep. I couldn’t even do my dishes during my first month of treatment.
Also- I am so glad you talked about staying moving!! It’s been huge for my journey.
Again, I apologize for the time to reply. Moving is crucial. Use it or lose it becomes mandatory for us cancer folk. I do Brazilian Jiu Jitsu, and it keeps me sane.
Thank you for this series. My mom just diagnosed with non hodgkin lymphoma B cell stage 4. About to start on RCHOP as well but she had heart problems & active infection so the doctors have to adjust the regime to suit her. Im just clinging onto hope that she’ll respond to treatment and her body could process the postchemo cell lysis.
So sorry to hear about your mum how is she doing now,did she have a heart problem before she started rchop ??
I’m with you guys ! The doctor first discovered a tumor in my belly that was growing on November 13, 2021. Fast forward to now. I just completed my 3rd infusion R-Chop treatment at the VA Seattle Cancer clinic. No problems ! No side effects whatsoever. In fact it was like going on a vacation. The first two treatments however were a bit more problematic …, but I survived. The first month of my journey I lost 40 lbs! And my lower body swelled up! Basically, life was no longer desirable. I wanted to die. But the collective energy of the doctors, nurses, nurse’s aids and staff support kept me going and brought me back to health against my own judgment. They were amazing. Of course prayers helped too. I have a portal on my right side upper chest area. Fatigue comes and goes. I didn’t feel tired or fatigued while undergoing the 3rd cycle. In the first two cycles, more physical activities did not help. I was like Luis, I didn’t want to do a thing but lie in bed. But after the 3rd cycle, I wanted to exercise…, and I did! I didn’t want to lay around and do nothing. I didn’t experience diarrhea! Constipation yes! I resolved it by exercising and drinking Orange and prune juices. I don’t know if this is a side effect or not but I am urinating constantly … almost every hour! Wasting away ??? Yes I saw that I was wasting away. But everything changed after the 3rd infusion cycle. I started to gain weight.. my appetite had returned and the food tasted normal again! My second PETScan also showed tremendous improvement as compared to the first PETSCan. In the second PETScan, the cancer markers that were all over the place in the first PETScan all but disappeared! The doctor and I were very pleased. However, he did notice something on my left lung. It could be something or it could be nothing! We won’t know until a third PETScan is done in three weeks.
So glad to hear about the progress!!! Thank you so much for sharing your experience ❤️-Stephanie
How r u now
@@sheloshelo4884 Not good ! Chemotherapy didn’t completely eradicate the cancer. I’ve two tumors growing : one in my left chest near the sternum the other on the right side of my back. I’m going through immunotherapy right now and then in a few weeks going to do CAR-T at SCCA/UW ! It sucks !!!
@@lordbyron3603 i hope u will be fine . I m nhl b cell. I will take second chemo tomorrow. I ve 11 cm tumor at torax. Its hard.. but there is no way
@@sheloshelo4884 🙏🙏🙏🙏
very good comforting video thank you
Post R-CHOP life longevity / remission prognosis of eighty (80), year old female treated for mantle cell lymphoma?
I'm having R CHOP this coming Wednesday. I will be having 6 treatments 3 weeks apart from each other.
My lyth
I just read this how are you?
The echocardiogram was for the Ritux. Immunotherapy is very hard on the heart, which is why it's sometimes not used in patients over 60.
Stay strong
Thanks for all that you do because I learn a lot from your stories. I have non-Hodgkin's follicular lymphoma and I learned about what the Deauville Score means and I had no idea. I had a PET scan after my chemo treatments and when I just now checked to see my score it's a 2 but I didn't know what it meant and no one told me I was in remission so the number 2 is a good number? I believe Luis said 1 and 2 were excellent so now I feel better about it.
Jan, I am so glad to hear that the stories have helped! Deauville score is so tricky. I personally went through it again, too, trying to understand it. This is not medical advice, but in experience sharing, the way it was explained to me was 1=A+, 2 =A, 3=A-, 4=C, 5=F. Again, always check with a medical professional for personal results, but I hope that's generally helpful! -Stephanie
@@ThePatientStory sorry
I have finished r chop The last treatment was the worst and I’m still having bowel issues but I am getting better and they found no cancer and I’m 83 years old so I expect a few more good years to give back some love that I have experienced
@@kaystafford5946how t u doing now,hope things are fine and you are feeling better ❤
So I am starting my R CHOP treatment this Wednesday. I will be having 6 treatments with 3 weeks apart from each session.
My lymph nodes are aggressive, so this is the reason I am having 6 treatments. I only found out 3 and half weeks ago that I had lymphoma on my neck. Luckily, nowhere else.
My question is. Did you lose your hair.
By the looks of it, everything is smooth for you both thank God
Me too..having my R CHOP now and for 6cycles for every 3weeks. so, how are feeling now..is any agressive side effects of it..
Same treatment diagnosed in June. I keep pushing probably too much but have to keep moving. Hang in there.
@@prudhviraj2405bhai ab kysa hou
@@prudhviraj2405im also diagnosed with nhl
How is Luis doing nowadays? Any update would be welcome to a fellow DLCBL survivor.
Thanks for asking. I’m still in remission, feeling pretty good most days. One day at a time.
@@luisvera5362 Thanks for the update! My prognosis was similar to yours - Stage 4a, double expressor. I went through 6 cycles of R-EPOCH 21, and I'm in the process of completing 4 cycles of High dose methotrexate (there was no CNS or bone marrow involvement for me, but my doc recommended this as a protective course)
My PET was a deauville 1 as well. I'm 37 and have way too much life left to live. Your videos definitely helped....thank you!
When you have that much diarrhea, you are dehydrating yourself for every ounce you lose in the stool, you're losing in liquids. How did you stay hydrated? Did you just have to drink a lot of water constantly?
Hubby is stage three fifth one almost killed him. Wbc not coming bVk should be continue? we want to quit
Im pretty scared of things like a PICC line because I'm alone and don't have anyone to help me.
How are you now Luis ??
can you share what kind of covers did you use to cover up your picc line during showers??
Sorry so late to reply! I don't always get notifications. I used saran wrap and painter's tape, and tried to make sure the stream of water did not hit me from the top down on that arm.
Non Hoskins lymphoma stage 4
H Did he have a transplant?
My brother has recently digonoses with six cycle of rchup in fourth cycle of rchup the petsscan 95% ok mean he is in complete remession and now the doctor has start 2 more cycle of rituxumab and he says that is good can any one tell me that why he do this he says that if u can afford then it is good
TAJ, best of luck to your brother, and glad the scan gave good news. I don’t know specifics, but I think 6 rounds is standard in many cases.
@@luisvera5362 i wish u will happy and don't think that it is coming back every thing will be happen with the well of the only one GOD Allah
Yes! This was inspiring and helped me and my adult son because there are alot of types.Seeing the exact thing,BCell lymphoma 4 was what we needed to see.Thank you for the channel and Louis thank you.
The one difference is my hubby just sleeps but he just got his at home meds a day before first RCHOP.I have to get a wheelchair as soon as we arrive so don't know how Louis went by himself.I let Dave twice for Electocardigram and the Education part big mistake because he wasn't even wanting to communicate,was hard to talk,etc. Got alot of info. confused which is why I have been with him with all app.besides those 2.Any add.ingo from Louis would be sppreciated.
I can't find part 1 or 3
I think the most part of going through cancer therapy is your loved ones being helpless to watch someone they love suffer. My husband has just been diagnosed with DLBCL the first week of October, 2024. He had a biopsy done. The doctors found d a mass on his spleen a bout 2 weeks later we got the pathology report. Then he had a CT scan and found out that some of the cancer was in the thymus area. The wall between the lungs and heart. He had an echocardiogram. His first treatment starts on Monday. Hoping he will be ok. We’re in this together.