Just diagnosed with DLBCL in the stomach
I was just diagnosed with DLBCL in the stomach. I live in connecticut and consulted with a local oncologist who recommended R-CHOP based on the path report from an independent lab. The report said that there will be an addendum because they need to do further analysis to determine if it is double or triple hit and also to distinguish between ABC versus germ line and other things. Oncologist said those results would not change his recommendation. He based his decision for r-chop based on level of MYC expression <10%.
I also went to Memorial Sloan Kettering which is the number 2 ranked cancer hospital in US. They want to analyze the slides themselves because they don't trust anyone else and they use the additional criteria to recommend R-chop versus da-r-epoch.
Whether I do r-chop or da-r-epoch my question has to do with where to have my treatment. If all other things were equal I would go with sloan, but if I have to do da-r-epoch that means going to their hospital in NYC which is probably a 2 hour drive each way. For r-chop with sloan it would be about a 50 minute drive each way to their satellite facility in westchester, NY.
If I stick with my local oncologist I would do the da-r-epoch in a local hospital about 15 minutes away and r-chop in an office 5 minutes away. My local oncologist said he would be willing to do da-r-epoch if sloan recommended it.
If the treatments are the same regardless of where they are done and my local general hospital has experience da-r-epoch is there any advantage to having it done in a major cancer hospital like sloan versus a local general hospital?
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Many questions
dan,
You propose many different questions and scenarios here. As we all state, we here are all writing as laypeople, with substantial treatment experience, but we are not medical professionals, and cannot second-guess professional medical advice. It is wise having your biopsy re-evaluated at Sloan; a second check of any biopsy is nearly always a wise thing. Any pathology lab with the necessary national certifications is going to do an expert job. I doubt Sloan's position is not really that they do not 'trust' others, as it is simply their established quality control approach.
Me, personally: I feel that a well-regarded, regional cancer center is frequently as good in treating most patients with most cancers as are the Top Five CCs, or whatever (Sloan, MD Anderson, Cleveland Clinic, Moffitt, and a few others). A new Ford will drive you from New York to LA as safely as a new Mercedes will, and cost less in the process. Many others here disagree with me in this, and recommend everyone to the best CCs only, so opinions differ. We totally respect each others opinions. I myself recently had a very odd, very rare biopsy result, and my local pathology group, which has every form of top-flite certifications, sent my samples to a lab 1,000 miles away for second opinion. The second lab agreed that it was odd and complex, but they in the end completely agreed with my lab's diagnosis. Many here over the years have travelled to big-name centers for second opinions and to meet world experts, and usually they have come home with recommendatios that were the same as what they got locally.
Be aware that R-CHOP and R-EPOCH are the same thing, except that R-EPOCH adds Etoposide. R-EPOCH also, at most centers, requires some inpatient time for each cycle, if not continuous inpatient admission. R-CHOP is almost always an outpatient regime. However, adding or deleting one drug in a combination often yields very different effects and outcomes. "DA" simply means that treatment is followed by a monitoring protocol that allows dosing adjustments up or down. This is usually significant in older patients who might have side-effect limitations, or in severely aggressive cases, which may need stronger than standard dosing.
Choosing a treatment center for most people ordinarily comes down to deciding what doctor (or group) and facility the patient most has a rapport with; you want a 'good vibe.' It is similiar to buying a house; there is seldom one perfect choice, while all others are short of perfection. Convenience factors, such as travel, are also relevant. I have had a lot of comorbities and serious health issues, besides two cancers, and I always study the bios of every doc I choose in every field. At times, the choice is as simple as somthing in their bio that I like or do not like.
Take your time and go with your decision,
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Thank you very much forMany questions
dan,
You propose many different questions and scenarios here. As we all state, we here are all writing as laypeople, with substantial treatment experience, but we are not medical professionals, and cannot second-guess professional medical advice. It is wise having your biopsy re-evaluated at Sloan; a second check of any biopsy is nearly always a wise thing. Any pathology lab with the necessary national certifications is going to do an expert job. I doubt Sloan's position is not really that they do not 'trust' others, as it is simply their established quality control approach.
Me, personally: I feel that a well-regarded, regional cancer center is frequently as good in treating most patients with most cancers as are the Top Five CCs, or whatever (Sloan, MD Anderson, Cleveland Clinic, Moffitt, and a few others). A new Ford will drive you from New York to LA as safely as a new Mercedes will, and cost less in the process. Many others here disagree with me in this, and recommend everyone to the best CCs only, so opinions differ. We totally respect each others opinions. I myself recently had a very odd, very rare biopsy result, and my local pathology group, which has every form of top-flite certifications, sent my samples to a lab 1,000 miles away for second opinion. The second lab agreed that it was odd and complex, but they in the end completely agreed with my lab's diagnosis. Many here over the years have travelled to big-name centers for second opinions and to meet world experts, and usually they have come home with recommendatios that were the same as what they got locally.
Be aware that R-CHOP and R-EPOCH are the same thing, except that R-EPOCH adds Etoposide. R-EPOCH also, at most centers, requires some inpatient time for each cycle, if not continuous inpatient admission. R-CHOP is almost always an outpatient regime. However, adding or deleting one drug in a combination often yields very different effects and outcomes. "DA" simply means that treatment is followed by a monitoring protocol that allows dosing adjustments up or down. This is usually significant in older patients who might have side-effect limitations, or in severely aggressive cases, which may need stronger than standard dosing.
Choosing a treatment center for most people ordinarily comes down to deciding what doctor (or group) and facility the patient most has a rapport with; you want a 'good vibe.' It is similiar to buying a house; there is seldom one perfect choice, while all others are short of perfection. Convenience factors, such as travel, are also relevant. I have had a lot of comorbities and serious health issues, besides two cancers, and I always study the bios of every doc I choose in every field. At times, the choice is as simple as somthing in their bio that I like or do not like.
Take your time and go with your decision,
Thank you very much for taking the time for such a thoughtful and detailed reply.
As an aside, my sister was recently diagnosed with pancreatic cancer at Yale. The pathologists there said it was a neuroendocrine tumour. Sloan's pathologists diagnosed it as a different type of extremely rare pancreatic cancer (<1%). In the end Sloan was correct. However, it turns out that the treatment protocol was the same because there is no separate established protocol for this extremely rare cancer. This makes me think that the pathology lab does make a difference.
If I need da-r-epoch it requires a 5 day stay in the hospital every 3 weeks.
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neighbordantec said:Thank you very much for
Thank you very much for taking the time for such a thoughtful and detailed reply.
As an aside, my sister was recently diagnosed with pancreatic cancer at Yale. The pathologists there said it was a neuroendocrine tumour. Sloan's pathologists diagnosed it as a different type of extremely rare pancreatic cancer (<1%). In the end Sloan was correct. However, it turns out that the treatment protocol was the same because there is no separate established protocol for this extremely rare cancer. This makes me think that the pathology lab does make a difference.
If I need da-r-epoch it requires a 5 day stay in the hospital every 3 weeks.
My next-door neighbor had some horrible form of NHL, beginning six months after I was diagnosed with my HL. He did six months of R-EPOCH. It was horrible for him, and he went from about 300 pounds to I guess 150. He could not walk or stand for a few months, and his room mate had to carry him to the car for his inpatient times.
His experience is surely not the norm, but R-EPOCH is harsh. Good luck with whatever is determined. PS -- my former neighbor has been well for ten years now, with no recurrences.
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I am alive because...
I went to a similar NCI designated cancer center on the west coast. If I had not, I would not have lived past 2008. The comprehensive centers employ the best and brightest, have cutting edge technology and conduct clinical trials. And, MSKCC is right: pathology is absolutely crucial. Many cancers are simple in their complexity, but lymphomas are unbelievably complex in their complexity.
I say make the drive. I did not want to as it was an 80 mile round trip. We have now done that hundreds of times.
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See if you can use both institutions
I am treated at an NCI-designated cancer center. I have several friends also treated at the same center but who have their cases "managed" by a team at MSKCC or MD Anderson. They travel to NYC/Houston a couple of times per year for follow-up assessment and their doctors consult. Once you have settled on a diagnosis and plan of treatment, perhaps this option might be available to you? Talk to the teams at both places and inquire as to the possibility.
Just a note: you mention both R-CHOP and DA-R-EPOCH as possibilities. When considering local vs. NYC for therapy, please take into account that the DA-R-EPOCH protocol requires 5 - 6 days as an inpatient, not just the drive to and fro. I belive that the R-CHOP is an all-day, outpatient protocol (please correct me if I have this wrong).
Another note: "hit" is not the same as "expression", so it sounds as though you do not have a full diagnosis just yet. The results of the molecular analyses may tip the treatment plan in one direction or the other. Best of luck going forward.
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Not all DA-R-EPOCH isEvarista said:See if you can use both institutions
I am treated at an NCI-designated cancer center. I have several friends also treated at the same center but who have their cases "managed" by a team at MSKCC or MD Anderson. They travel to NYC/Houston a couple of times per year for follow-up assessment and their doctors consult. Once you have settled on a diagnosis and plan of treatment, perhaps this option might be available to you? Talk to the teams at both places and inquire as to the possibility.
Just a note: you mention both R-CHOP and DA-R-EPOCH as possibilities. When considering local vs. NYC for therapy, please take into account that the DA-R-EPOCH protocol requires 5 - 6 days as an inpatient, not just the drive to and fro. I belive that the R-CHOP is an all-day, outpatient protocol (please correct me if I have this wrong).
Another note: "hit" is not the same as "expression", so it sounds as though you do not have a full diagnosis just yet. The results of the molecular analyses may tip the treatment plan in one direction or the other. Best of luck going forward.
Not all DA-R-EPOCH is inpatient. I was just diagnosed in Sep with DLBCL in the stomach and currently going through treatment with DA-R-EPOCH. I am fortunate enough that I don't have to be inpatient with each cycle. My first cycle was inpatient since it was my first and my doctor wanted to monitor me closely. But every subsequent cycle (I start cycle 4 tomorrow) has been outpatient. I just get a large fanny pack with a pump that infuses me over 24 hours. I go back the next day and the nurses give me some zofran, change out the chemo bag, then send me home.
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I forgot!emdo said:Not all DA-R-EPOCH is
Not all DA-R-EPOCH is inpatient. I was just diagnosed in Sep with DLBCL in the stomach and currently going through treatment with DA-R-EPOCH. I am fortunate enough that I don't have to be inpatient with each cycle. My first cycle was inpatient since it was my first and my doctor wanted to monitor me closely. But every subsequent cycle (I start cycle 4 tomorrow) has been outpatient. I just get a large fanny pack with a pump that infuses me over 24 hours. I go back the next day and the nurses give me some zofran, change out the chemo bag, then send me home.
This was just becoming available when I had my treatment (~4 years ago). My center was unable to offer it due to lack of person-power to handle those daily chemo-bag changes. But definitely worth inquiring about if you can do locally (4 hours RT drive would have been too much for me). Thanks for the reminder, Emdo!
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da-r-epoch in/outpatient
Thanks for pointing out that da-r-epoch isn't necessarily all inpatient. I may have misunderstood both the doctor and nurse. The doctor first said that da-r-epoch was outpatient but he said that he wanted me in the hospital for the first few days to monitor me. Then afterwards I spoke with the nurse who said I would have to be in the hospital for 5 days for each round. It looks like they might have been both right. Probably they meant to say that the first round would be inpatient and subsequent ones would be outpatient. I will definately clear that up with them because travelling 2 hours each way for just the first round is a lot more manageable. The subsequent ones would be in their Westchester, NY facility which is about 50 minutes away.
They said that each round lasts for 5 days with continuous infusion. Did you have to go back to the facility 5 days in a row for each round?
Thank god for this forum.
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Yes, 5 days in a rowdantec said:da-r-epoch in/outpatient
Thanks for pointing out that da-r-epoch isn't necessarily all inpatient. I may have misunderstood both the doctor and nurse. The doctor first said that da-r-epoch was outpatient but he said that he wanted me in the hospital for the first few days to monitor me. Then afterwards I spoke with the nurse who said I would have to be in the hospital for 5 days for each round. It looks like they might have been both right. Probably they meant to say that the first round would be inpatient and subsequent ones would be outpatient. I will definately clear that up with them because travelling 2 hours each way for just the first round is a lot more manageable. The subsequent ones would be in their Westchester, NY facility which is about 50 minutes away.
They said that each round lasts for 5 days with continuous infusion. Did you have to go back to the facility 5 days in a row for each round?
Thank god for this forum.
Yeah, like I said my first round was inpatient to monitor me. Plus she was also concerned that the lesion in my stomach might perforate so she wanted me there so that they could whisk me off to the OR if necessary. Thank goodness I didn't perf and didn't require surgery.
Yes, you have to go 5 days in a row. For my treatment, day one is the longest. I have to come early to get labs, then they'll do the infusion of antinausea and Rituxan, which takes about 3.5 hours. All in all, my day one takes about 5.5-6 hours. Then they send me home with a pump that infuses me continuously for 22 hours. I come back on days 2-4 to get another dose of antinausea and they change out the chemo bag for a full one. Days 2-4 only take about an hour (really depends in your nurse's efficiency). Day 5 I come back for more antinausea, cytoxan, and Neulasta cartridge and the pump goes away. This usually takes about 3 hours. And the weeks in between I'm getting labs 2-3 times a week.
Not gonna lie, it'a definitely a pain having to go back and forth everyday. And my commute is only 25 mins. Also, the pump can be cumbersome and annoying. Every 18 seconds it infuses a small dose making a "squeek squeek". And showering can be a pain, but it's doable. Some things to take into consideration. I personally have no regrets going for EPOCH.
Good luck with your decision!
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Additional proceduresdantec said:da-r-epoch in/outpatient
Thanks for pointing out that da-r-epoch isn't necessarily all inpatient. I may have misunderstood both the doctor and nurse. The doctor first said that da-r-epoch was outpatient but he said that he wanted me in the hospital for the first few days to monitor me. Then afterwards I spoke with the nurse who said I would have to be in the hospital for 5 days for each round. It looks like they might have been both right. Probably they meant to say that the first round would be inpatient and subsequent ones would be outpatient. I will definately clear that up with them because travelling 2 hours each way for just the first round is a lot more manageable. The subsequent ones would be in their Westchester, NY facility which is about 50 minutes away.
They said that each round lasts for 5 days with continuous infusion. Did you have to go back to the facility 5 days in a row for each round?
Thank god for this forum.
Good summary by Emdo. My treatment also included intrathecal (spinal) methotrexate on Day 4, so that could be a long day as well. Probably a 3 - 4 block, since you must immobilize for 1 hour afterwards. For me, even if it had been available, my need for nursing and aide care was such that I doubt we could have managed at home, especially in the first two rounds. As I got my strength back, I think I would have welcomed it in the later rounds. But it still would have been a lot of work for my spouse to take care of everything (meals*, bathing, toileting, etc.). If you are otherwise strong and have someone at home to help, it could be a good choice for you.
*Meals: you may not have gotten into this yet, but there are hygiene requirements related to food intake. One plus about the hospital is that they have the "immunocomprised diet" skills down.
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I just got followup addendumEvarista said:Additional procedures
Good summary by Emdo. My treatment also included intrathecal (spinal) methotrexate on Day 4, so that could be a long day as well. Probably a 3 - 4 block, since you must immobilize for 1 hour afterwards. For me, even if it had been available, my need for nursing and aide care was such that I doubt we could have managed at home, especially in the first two rounds. As I got my strength back, I think I would have welcomed it in the later rounds. But it still would have been a lot of work for my spouse to take care of everything (meals*, bathing, toileting, etc.). If you are otherwise strong and have someone at home to help, it could be a good choice for you.
*Meals: you may not have gotten into this yet, but there are hygiene requirements related to food intake. One plus about the hospital is that they have the "immunocomprised diet" skills down.
I just got followup addendum from original path lab. It says that there was no MYC rearrangement and no MYC rearrangement. Based on this they decided not to test for BCL2 or BCL6 translocation. They said that based on this it was not diagnostic of a double or triple hit lymphoma and that the high risk "double hit/triple hit lymphoma" is characterized by MYC translocation along with BCL6 and/or BCL2 translocation.
Sloan will do its own analysis. We'll see what they say.
The original path lab is Neogenomics and it has taken forever to get them to send the slides to Sloan. They have put up road blocks at every turn. Sloan is actually urging me to have them do another biopsy themselves so that they could get it in the hands of their pathologists before things drag out too long.My local oncologist says that based on this he would recommend R-CHOP. We'll see.
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Greetings Dantec,dantec said:I just got followup addendum
I just got followup addendum from original path lab. It says that there was no MYC rearrangement and no MYC rearrangement. Based on this they decided not to test for BCL2 or BCL6 translocation. They said that based on this it was not diagnostic of a double or triple hit lymphoma and that the high risk "double hit/triple hit lymphoma" is characterized by MYC translocation along with BCL6 and/or BCL2 translocation.
Sloan will do its own analysis. We'll see what they say.
The original path lab is Neogenomics and it has taken forever to get them to send the slides to Sloan. They have put up road blocks at every turn. Sloan is actually urging me to have them do another biopsy themselves so that they could get it in the hands of their pathologists before things drag out too long.My local oncologist says that based on this he would recommend R-CHOP. We'll see.
Greetings Dantec,
As was mentioned earlier, we are not medical experts, just expert patients here. I was incorrectly diagnosed locally in far northern CA and went to MD Anderson in Houston for an independent opinion and my family and I believe that decision saved my life. In my non-professional opinion, it can be especially important to get the first line treatment right with aggressive/High Grade DLBCL ,whether or not the MYC level is high and whether or not any significant BCL 6 or BCL 2 pathologies are found. This type of cancer can be very insideous and my expert doctor at MDA and many medical journal articles discuss the risk of the infiltrates getting to the brain through the CNS fluid. I do not write this to worry you uneccessarily, but my pathology did not indicate high levels of MYC or BCL6 or BCL 2, althougth there was some found by MDA. My doctor felt it best to hit the cancer as hard as I could tolerate because if you don't kill all of the little infiltrates, they can develop resistance to the treatments, so I had 6 rounds in-patient DA-R-EPOCH, along with 12 intra-thecal infusions of chemo, and then 2 consolidation rounds of High Dose Methotrexate. The 6 rounds were given over the course of about 5 days of in-patient care each round, so the toxins were flowing through my body for a longer period of time as compared to some of the out-patient plans. My local Oncologist who diagnosed me with an aggressive form of Follicular NHL prescribed only 6 rounds of R-CHOP, each to be given in one day and would not order an MRI of my brain even though I requested it.
Anyway, as I mentioned, this is all just my anecdotal, non-medically trained report. I am glad to read that you have sought another opinion at such a top facility and I am sure they will recommend the very best course of treament for you. Incidentally, MDA did get all of my biopsy material and scans from the local folks who I practically had to badger to get various tests even ordered correctly and done, but they did another bone and bone marrow biopsy, a PET-CT, and an MRI of my Brain when I went out for my initial appt with them in Houston. Of course this was Pre-COVID-19, but I saw my amazing Doctor on a Monday, completed the tests/procedures, and saw him again on Thursday of the same week. He gave me the diagnosis, his treatment recommendations, and I chose to be admitted on that same Thursday and I started my treatment that night! I got in and started my treament just before the Hurricane Harvey lock-down. Aggressive DLBCL doesn't mess around. In my case, it was attacking my bones and bone marrow, so I was limping from major damage to my left iliac crest when I arrived at MDA. If Sloan is ready to do the procedure and get it analyzed quickly, personally, I would let them. One study I read on this type of cancer indicated that the median life span without treatment is 1 year. I know for a fact that I had it for at least 6-7 months before I got to start treatment. In my case, about 3 months was wasted on treating a non-existent rotator cuff injury where the cancer was destroyng three of my bones in my shoulder. The good news with this cancer, if there is any good news, is that the majority of ppl can get to remission and eventually be declared cured. I am at almost the 3 year milestone for NED myself. I haven't been on here much because the big "C" has not been on my mind much, which in itself is really great because for the first year, I was too obsessed with it and wondered if I would ever find a new "normal." Today, Is my 57th birthday and three years ago on this day I was in-patient at MDA getting my 6th round of heavy-duty combo-chemo and my first and hopefully only blood transfusion, so here I am with NED for almost 3 years! Sending good thoughts for healing and strength as you head to battle and conquer this enemy!
Sincerely,
Diane
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Thanks for your feedback.
Thanks for your feedback. Sorry that you had to ensure such an ordeal but happy that you are now doing well.
The original path lab is Neogenomics and it has taken forever to get them to send the slides to Sloan. They have put up road blocks at every turn. They ultimately did return them to my gastroenterologist and I am taking them to Sloan on monday, dec 21, when I am also having a bone biopsy.
Given the lack of spread beyond the stomach as indicated by the PET scan and the findings in the followup addendum from the outside lab the tumor board agreed that R-CHOP was the right regimen for me. I am scheduled to start it on dec 24. However, the protocol and start date is contingent upon the Sloan pathologists confirming the findings of the outside lab. They felt it was important to at least schedule treatment ahead of time in order to avoid delay before they finalized their findings.
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Good Luck
We went through a similar situation back in August. My mother was hospitalized and we discovered she had cancer at the hospital. They performed 2 biopsys at the hospital and had a tough time determining the cancer subtype, they were only certain it wasn't pancreatic cancer. We went back and forth because getting a second opinion down at the mayo was going to be about a month out. Was it worth waiting a month? The drive to the mayo would be 1.5hrs each way. The university was ~2wks out and the drive down there would be 40mins each way. The oncologist said he had enough information to start treatment and suggested we start rather than wait because the longer we wait the worse it could get. I spoke to a family friend who is a retired oncologist and he agreed that based on the information we had the treatment path would not differ but it would be nice to know the subtype in an ideal world. So we decided to start treatment. This ended up being the right call in terms of support. We ended up going to the clinic so often, sometimes it was every other day.
In parallel we scheduled our secondary consult with the mayo and they confirmed it was not pancreatic cancer but also confirmed that they need more material to determine the specific type of lymphoma. Since we had already started treatement there was no going back. We did consult the mayo as we progressed through treatments. We had them review the PET scans and it seemed like she was responding appropriately to treatment. We just finished chemo so hopefully this roll of the dice payed off.
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