PMBCL
Hi. I am new here. I was diagnosed with primary mediastinal b-cell lymphoma. My hematologist recommended that I take the DA-EPOCH treatment. I have just completed my first cycle. My second begins in 2 weeks' time. So far things seem to be going well. My blood tests show that my hemoglobin is up compared to the day of discharge. White blood cells and platelets are down but within the acceptable range. I will have another test in 4 days' time before I start my second cycle. If all goes well, my doctor will up my chemo dosage by 20%. If this helps anyone in a similar situation, I am glad. Or, if anyone has some tips/advice, I would really appreciate it. Blessings to us all.
Comments
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Hi Kokkee and welcome to the club that you never wanted to join. It sounds as though things are going really well for you so far. Congratulations on that. Although getting dosed up may feel a bit like getting punished for good behavior, I hope that you can see that as a win in that your body must be handling the chemo well. From what I've read, PMBCL has an excellent prognosis and you have every reason to expect a good outcome. In the meantime, my tip is try to stay as active as you can. Please do come back if you have specific issues or questions. Best of luck going forward
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Welcome! Sorry to hear this, but glad to hear of your willingness to help others! Are you being seen at a National Cancer Institute designated comprehensive cancer center? I ask because they are the best of the best. If not, and a consult is not possible, is your hematologist consulting with such a center? It can make all the difference.
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Hi. Thank you for welcoming me here. I am not in the US. Though I lived there for 7 years as a grad student. I found ACS as I was looking for answers for my condition and treatment options. I hope that does not disqualify me from joining the network.
Day 11, six days after my 1st cycle, I caught a fever and found that my WCC fell down to almost zero.
I am back at the hospital, fighting the fever among other things. If my WCC rises to an acceptable level I can be discharged and get ready for the second cycle. My hematologist is trained in Ireland and I doubt she has any connection with NCI.
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OK. Where you are located is not immediately apparent, so pardon my intrusion! PMBCL is common enough that I would imagine hematologists in the UK have considerable experience with it. Although DA-EPOCH is well suited for many aggressive B-Cell Lymphomas, I do wonder if Rituximab/CHOP (R-CHOP) might also be a consideration? Tumours tend to melt away like ice cubes when Rituximab is applied - the caveat being that some have allergic reactions to Rituximab.
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Sorry to hear that things have taken a bit of a downward turn. I, too, had white counts fall to below 0 on my first 3 rounds. Fortunately no neutropenic fever but I was absolutely obsessively neurotic about food and personal hygiene and maybe that helped. Also, it is standard practice in the US and I believe the UK to give a shot of a white cell boosting compound (Neulasta) within 72 hours of finishing a round of chemo. That usually brings the white count back up substantially. Did you have that? Perhaps the protocol there is to administer only on an as-needed basis rather than give to everyone? Hope that things get better for you and that you are able to go forward with your next round as scheduled
Apropos R-CHOP vs. R-EPOCH: I currently have a family member being treated for PMBCL. While there is continued discussion in the literature, DA-R-EPOCH still seems be the treatment of choice unless there are other medical issues. At least where she is; other facilities may have different protocols/criteria. Hang in there.
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OK, it makes sense now. Those are the two "gold standard" treatment for aggressive B-Cell lymphomas. The dose adjustment regimen seems appropriate as everyone reacts differently to the treatment. This is one case where one of more of the drugs "may" need to be lowered or stopped for a time so that your response to the therapy may be closely monitored.
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Thank you for coming back to me. I'm now on the third day back in the hospital. Fever coming on and off... Just borderline. Havent gone up above 39C degrees. The day I was discharged (from the first cycle) I was given six immunity booster shots to be takeb daily. Today I was given the 7th booster shot. I do not know the name of the booster. But I'm feeling slightly better today. I was low in magnesium. Given through IV. Im also on daily antibiotics given through IV/chemo port.
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Treatment is like hiking across the country - hills and valleys. Yet, we are resilient creatures and we bounce back. That does not change the fact that the valleys do not feel good at all. There are so many distractions along the way, but always keep the goal - and the enemy - in mind. It took me seven regimens and fifteen drugs (four of them twice) to get me into my third remission with the first of three cancers. So, if I can do it, you can easily triumph over this.
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Thank you for the encouragement. It really helps. It was so disappointed that my WCC is still very low. From 0.3 to 2.y magnesium was low as well. They gave to me through IV. Now I eat a bit better. Hoping the blood test next morning. I am shamed by the courage and tenacity of you true survivors
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While I can certainly understand where the sentiment comes from, I hope that you can remove any feeling of "shame" from your mind. We all did (or are doing) the best that we could under our particular circumstances. While I was fortunate not to have a fever, that does not mean that I did not struggle at the time. Glad that you are getting the white blood cell booster (Neulasta is only one of many brands) and hopefully that will get your counts back up. The 7-injection protocol may actually be more easily tolerated than the single shot approach. Be well.
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Thank you. I will try not to be ashamed, but rather to be encouraged by the examples of the many who went through similar, or even worse, struggles and did not give up and fight on to live. Today, I received great news. My white recovery was sufficient enough to be discharged. Bloodwork (blood culture) showed no infection. It good to be home.
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You are absolutely right. This is a most precious gift. I will remember that when I feel the lowest. And tell myself to fight on with every fibre of my being. To never ever give up. I do not want to end up like the next guy on the bed. He came in too late, stage 4, and there was nothing else the doctors could do except to ease his pain and suffering. I thought he was much older than me. He looked it, but in speaking with his son, he was actually younger. There was nothing I could do but comfort him. His relatives came from out of state, probably to see him for the last time. It was painful seeing their faces.
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I took DA- Epoch for my lymphoma, it was tough but I made it. It’s been 12 years ago.m
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I lost my hair, my toenails and was really sick, but I made it. I had a wonderful doctor and she took good care of me. I was cancer free for many years now I have been diagnosed with follicular lymphoma. My first diagnosis was diffuse large cell B, it was aggressive and follicular is slow growing. I am on wait and watch so am not taking treatment right now and doing ok.
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