My mother who is Type II Diabetic, recently got diagnosed at Stage III of Diffuse Large B Cell Lymphoma (DLBCL) followed up with a diagnosis that at the genetic level, both c-myc and bcl-2 oncogenes are translocated.
Informally, this is known as "Double Hit Lymphoma", as it's so new in classification. It's described more in this hematology paper: http://bloodjournal.hematologylibrary.org/cgi/content/full/114/11/2273
In papers I've read, they theorize that a bcl-2 suppressor (antisense treatment) might help increase the odds (oblimersen marketed as Genasense or a BH3 mimetic such as ABT-737).
1. Anyone chasing down such things for themselves/a loved one with double hit lymphoma?
2. Anyone have concrete suggestions for treatment beyond the basic R-CHOP which my mother is already going through?
We're in Canada (Toronto), but if there's a target Phase II or Phase III trial, we'd considered temporary relocation.
My daughter is being treated today at Dana Faber in Boston. Dr. is leaning toward this diagnosis of DH. Wish there was a way to get in touch with you. She is 46. Lives in NH, not far from Boston and the excellent facility. I think dr is an instructor at Harvard. supposed to be very good. We are awaiting firm dx. anyway we can be in touch? Sarah
Hi Sarah. I'm sorry to hear about your daughter's diagnosis.
My mother, fortunately, completed six courses of R-CHOP and is so far, in remission (it's been about 4 months since the chemo came to a close).
In my research, it seemed like while there were things in the research pipeline, nothing was there for double-hit specifically. Furthermore, unless you're part of a trial, practitioners are generally not going to go off protocol. And the closest protocol they have, is for generic Diffuse Large B Cell Lymphoma.
In my mother's case, she was lucky that R-CHOP worked to put her in remission. Of course, we don't know for how long, but in retrospect, it seems to be better than a consolidative stem cell transplant would have been.
I'd be happy to offer and guidance / answer any questions I could. Let me know how to get in touch with you (email or phone) and I'll reach out.
My 67-year-old father was diagnosed with lymphoma in April.
He had large rapidly expanding chest wall masses which were biopsied on 4/20/12.
The needle biopsies contain a large amount of crush artifact which
makes interpretation difficult. In some sections, skeletal muscle
fibers are infiltrated by a diffuse proliferation of moderately
enlarged, malignant cells with hyperchromatic nuclei and scant
cytoplasm. On touch prep slides, many cells have prominent
nucleoli. The malignant cells are positive for LCA, CD20, CD10,
BCL-2, and BCL-6. The cells are negative for CD3, CD5, CD34, Tdt,
cyclin D1, pankeratin, TTF-1, and S100. The MIB-1 proliferative
rate is approximately 80%. MUM-1 stains approximately 80% of the
cells. Although precise classification is not entirely possible on
the limited biopsy material, the morphology and immunophenotype are
compatible with diffuse large B-cell lymphoma.
A PET scan indicated malignancy in multiple sites, including bone marrow.
He had one session of R-CHOP and an intrathecal (spinal) treatment before the genetic testing came back. Genetic testing later indicated that he had a double-hit. Upon receiving this information his oncologist (at Kaiser in Portland, Oregon) switched him to R-EPOCH regimen. Though there is no indication of cancer cells in the central nervous system, they have decided to give him the spinal treatments with each chemo regimen.
At this point he has had one session of R-CHOP and one session of R-EPOCH. A second PET scan on 6/4 shows dramatic encouraging changes (I don't yet have the written report).
I believe that the plan, if R-EPOCH goes well, is to give some sort of transplant. (I don't yet have the details on this.)
I will post more specific details later. I hope that others will do the same. It would be useful to know how different facilities are approaching this diagnosis.
Thanks so much and good luck to those who are reading this.
DHL Daughter: Glad to hear your father is responding well. My mother is fortunate that just with R-CHOP (6 rounds) and nothing else, she's in complete remission a full year after the completion of chemo.
When I was actively researching any shreds and bits I could find, it seemed like R-EPOCH and variations like DA-EPOCH-R were the more sophisticated ways to go.
One of the tricky things is that in and of itself, "double hit" is an umbrella terms of sorts. It's two genetic dislocations if you will. In my mother's case, it was BCL-2 and C-MYC. And even here, there can be subtle sub-classifications that practitioners don't have the knowledge to act on, but researchers can only just identify.
My non-scientific assessment is that within these variations are some of the reasons why some folks with double hit respond well, while most do not, to something as standard as R-CHOP.
My non-scientific information gathering seems to point to the R-EPOCH chemo having better results (as empirically reported) in more overall double hit lymphoma cases.
I would recommend getting a good book on Lymphoma, such as "Living with Lymphoma" (it's on Amazon). It gave me a good grounding in the mechanics of what was going on and how to start engaging with practitioners and reading some research papers.
I like what Concernedson is saying here. R-EPOCH does appear to be the better route against DLBCLs, but so far to my knowledge there has been no change in NCCN standard treatment guidelines, so it may not be offered to patients if they don't bring it up. Drug-wise there's little difference between R-CHOP and R-EPOCH. I think the only difference is the add of etopiside to EPOCH. However, R-EPOCH is typically delivered in a dose-escalated format (DA-EPOCH-R), and that's the likely mechanism that makes it effective.
Also I'm unsure how double-hit lymphoma plays out within the three designated subtypes of DLBCL.
The transplant you mentioned is surely a stem cell transplantation- either his own cells (autologous) or donor cells (allogenic). That's generally done as a last ditch effort, because it's so serious and so difficult for the patient to endure.
Ross: Thanks for writing. I've seen your excellent and comprehensive posts elsewhere on other forums and have been hoping you'd chime in. (I think we need more general discussions in which people can post their protocols for this condition.)
As I mentioned to Concerned Son, I need to get the full genetic report to find out precisely what we're dealing with--not that I'd really understand it at this point.
Yes, I think we're talking about SCT and I think it would be autologous. We were told at the outset that if chemo went well that would be the next step. It was presented more as a second step than a last ditch effort.
I noticed in one of your posts elsewhere that, due to the difficulty of interpreting pathology reports, you always recommend getting a second opinion from a cancer center. Kaiser is going to send my dad to OHSU to consult with the oncologists there (they would do the transplant) but I'm assuming, since they're in bed together (I mean that in the sweetest possible way) that they may not review the samples and probably follow the same protocols. Given the risks of a transplant, I'm guessing you'd recommend we get another opinion before undertaking it. (If so, do you know anyone in the Northwest that would be a good fit?
This is my third round of helping a close friend/family member with cancer, but this is the most challenging. Usually I can compare studies and get a pretty good idea what protocol looks best. With this diagnosis, I feel at sea. Sample sizes are so small and I can't help feeling that everyone is still guessing at the best approach.
I should add that in the studies I've found (all retrospective) I'm not seeing cases of remission without relatively quick relapse. I was struck by the fact that there was an entire article devoted to a patient who had been in remission for two years (as though this was an extraordinary event). Are you aware of any patients who are, say, five years out with this diagnosis? You needn't pull any punches (unless you are concerned about other readers of this forum). Given the rather grim facts, my father and I have reached an agreement that he will be shielded from this sort of information so that he can keep a positive state of mind. He won't be reading this post. But I'd like to know what the best case scenario is so that family members can adjust their expectations.
Finally, are there any questions that you'd be asking at this juncture if this was your father?
Thanks, in advance, for any input at all.
OHSU and Kaiser are part of the same health network huh? I didn't know that. I know Kaiser has their own standard treatment guidelines. I don't know what OHSU uses, although they are an NCI designated institute. They're not who comes to mind in terms of doing SCTs (I think of City of Hope which has done over 10,000), but they do list their lymphoma team:
I would run those names through Pubmed and see what comes up, make sure you're getting the most experienced of the bunch in terms of DLBCL and double-hit.
I do always stress second opinions on pathology, it's more important for T-cell lymphomas but there are many prestigious oncologists in the country who would not accept a patient who hadn't had a second opinion. Check this list for second opinions:
regarding the dearth of info on double-hit and not seeing the kinds of survival numbers, the reason is because the diagnosis of double-hit is way too new to provide that. Retrospective studies as you mentioned are probably as good as you'll get right now.
Regarding questions, there are many but you should ask what kind of radiation/chemo regimen he'll require, whether there's any data backing up the entire protocol they want to run on him (and if so ask to see it), and straight up ask how many autologous xplants they've done. My guess is that Fred Hutchinson in Seattle blows them away but I could be wrong.
Concerned Son: I've been meaning to get my hands on the actual genetic report to hear exactly what we're dealing with, because "double-hit" is, as you say, an umbrella.
I'm so glad to hear that you mom is doing well. That's an encouragement to everyone who is dealing with this difficult condition.
I'll check out the book, because I truly don't yet understand the basics of lymphoma. I've just been locating research on this condition, none of which is very encouraging.
Perhaps my dad is in the same camp as your mom and will do well. The oncologist seemed genuinely surprised at well he has responded to the chemo regimen--virtually everything has cleared. Because of the good results, she is setting up appointments to begin the transplant process. (Before she had made this sound very iffy.)
I will keep my fingers crossed for your mom and my dad and keep posting here.
Thanks for your input and support!
I noticed in another post that you were at one time looking into a transplant for your mother. But it sounds like she ended up just doing R-CHOP. I'm curious, if the transplant never took place, what the reasoning was. We've got a possible transplant on the horizon and I'm wondering whether it's worth the risk.
Double Hit Lymphoma treatment plan.
I'm not sure if this thread is used much since the last posts are from 2011, but my husband was diagnosed with double hit lymphoma last week. Treatment plan is to alternate Hyper CVAD with CODOX M. So, treatment for rounds 1, 3 and 5 will be Hyper CVAD. Treatments 2, 4 and 6 will CODOX M.
I thought I would post so that others would have the latest info re: double hit. He's at a leading cancer hospital in the country, so I think they have the most current treatment plan.
My thoughts and prayers go out to those who have this terrible form of cancer.
Thanks for posting this info on newer treatments. I hadn't come across anyone using Hyper CVAD or CODOX M for Double Hit Lymphoma before.
I will keep that in mind should that ever come up (hopefully not). My mother, now 66, has been in remission for over 14 months. She has been one of the lucky ones, with just simple R-CHOP (6 rounds) and neupogen along the way.
Sorry to read about your mother's dx. Starting to see this more and more often, the dual fusion or double hit lymphoma, probably long been overlooked or diagnosed as DLBCL, Burkitt's lymphoma or B-lymphoblastic lymphoma/leukemia.
Some ongoing clinical trials and some finished trials have eschewed R-CHOP for double hit lymphoma and instead looked at DA-EPOCH-R, or dose escalated EPOCH with the addition of Rituxan. I think the trend might be in that direction. The phase II trials I had been familiar with were out of the NCI but I believe were spread out at comprehensive cancer centers across the US. Try searching the MYC and Blc-2 and lymphoma at clinicaltrials.gov.
You might want to check out this lengthy thread at supportgroups.com about dual translocation high grade B-cell lymphomas as well.
Thanks Ross. I'm going through that other thread now. It's a gold mine in what is otherwise such little information available.
Let me know if you have other questions, I'm the same Ross from that thread.
My mother was diagnosed with a double hit lymphoma in November. She entered a clinical trial at Mass General Hospital in Boston. She just completed her 6th round of chemo and is going in for her 1st of 2 stem cell transplants next week. The transplant doctor is widely respected for his research and treatment of double hit lymphomas. However, there haven't been enough cases to warrant statistics.
I highly recommend finding a clinical trial like this. Until she went to Mass General and entered the trial, the oncology docs at the other hospital were at a loss with what to do for next steps.
Hope this helps.
Thanks Matt. Are you referring to this trial:
I was looking at that originally. Did you happen to be in the area already, or did you guys relocate to do the treatment? It's a bit trickier being in Canada, but not impossible (lots of insurance paperwork and related to try to get it covered, etc.).
I did speak to a Hematologist in the UK who suggested a BEAM autologous stem cell transplant after the 6 courses of R-CHOP. My next step is to get that discussion going with the oncology team here in Toronto.
It looks like this trial takes 2 key steps:
1. Autologous stem cell transplant
2. Allogenic stem cell transplant
Effectively, I'm going to try to go down the path of Step #1, assuming my mother is deemed healthy enough for even that.
Did you discuss DA-EPOCH-R with any of the researchers on this study or at your original hospital?
I agree that it's so new re: stats/treatment, that most places do R-CHOP x 6 and hope for the best.
we are now at brigham women's hospital in Boston. Daughter age 42 is finishing up the first 3 days of chemo and today getting the Ritusin. Final dx now saying double hit lymphoma. Has anyone had this dx and if so, who and where is best recommended. we have excellent dr. here at dana faber, but need more quests answered. pls. if you know anything or can provide guidance, would you pls write back on here or provide a personal email or telephone where I can talk to you. Also, after this first 3 day treatment how can we best help at home? Very much need encouragement. Thank you. Sarah
MD Anderson, Houston TX, Dr. Hagemeister
Just finished the program myself for the MYC 'double hit'. Now 60 days out. Stem Cell is tough.
Stage III+, upper & lower, 'poor risk' 60yr old male.
Read Hagemeister's works.
I'm guessing you had an autologous transplant? The only reason I guess that is because at 60 days out I don't see you having contact with a computer, the first 100 days or so being so crucial to remaining as sterile as possible.
Yes, all my own.
I'm a little more resiliant than most, but there is a difference between sterile and cleanliness. I don't lick my fingers, don't let the dogs lick me, don't brush the horses, cut the grass with a mask, peel my fruit and wash my hands often. Bloodwork shows I'm recovering quickly perhaps due to an active lifestyle (walk 2 miles with cardio machines and free weights on alternate days, then chores).
FW, there are as many treatment plans as patients. Equally important are facilities, attitudes of the nursing/care staff and available access to the doctor/specialists for questions and treatment of the side effects of the chemo regimen.
A well published Doctor and/or institution is an asset.
Some are merely following a boilerplate treatment plan and have little investment in patient success.
Depending upon when in it's lifecycle the disease was diagnosed, your husband is likely to be sicker (more sick?) from the treatments than he was from the Lymphoma. DO NOT hesitate to ask about the side/after effects of any treatment. There will be many.
Ask about how to alleviate the patient's pain/distress. Demand relief for your patient. When the Doctor says, "Well, we could give him some ...", take it! They have seen these effects before and know how to manage them.
You will want to be with your husband thru the entire ordeal as a caregiver. Good for you. There will be periods when the patient needs to be alone in their misery/humility. Please respect this. The space will be good for you as well.
Even at the worst of times, the patient must remain ambulatory to 'relieve' the gastrointestinal impacts. It is best to start a walking program early when the patient isn't feeling too bad and maintain it thru the treatments. The staff can help you with this, if you ASK. Be prepared to carry a basin with you and maintain a mental map of the bathroom locations along your walks (shuffles). It's that severe as the gut shuts down.
Reborn, have you got to 100 days yet post transplant? Hope you are doing well.
Today is 100. Have just returned from my 'graduation' PET scan. All clear.
That's great news. You are a rarity in my search! Did they take the stem cells after your chemo put you in remission? Apologies if you said already. Very pleased for you.
What are you searching for Newreality?
Yes, after the K'mo killed off the Lymphoma we pulled the stem cells. Need clean ones.
Sooooo Happy to find and read your post. Congratulations on your recovery.
How are you doing? Any words of advise? My husband is getting ready for transplant.
He is 47 years old. Not sure what to expect.
One thing I can tell you is keep everything as positive as you can for him. 90 % of what Dale deals with has been a mental battle I am a reader and neec to understand everything. He only needs someone to point to the right direction. Less is more The stem cell first 9 days was pretty easy. He was up, eating, walking. Almost seemed normal. I even asked the doctor if they were givibg him a placebo treatment. Lol. The last two days were the serious drugs that do the dirty work of opening up the DNA. We are on day +5 after transplant. He was awake most of the day today. If it wasn't for the mucusitus And chemical rash he would be asking to come home. His WBC is .01 and platelets are 14 so he had transfusions coming
When will your husband start his transplant? Will you be at MD Anderson too?
I'm searching for positive post-transplant stories after double hit.My brother at beginning of journey. Not much I can turn up in my searches. Are you able to explain a choice of auto vs. allo. They are going for allo but maybe it's a back-up plan and auto is preferable. Thanks!
"Auto is the easy one." I was told by a fellow patient, back for a second try at Allo. (There was nothing easy about it!)
The recommended protocol is driven by a number of factors, many of which come off of a 'success' template. Age, patient condition (weight, size, 'type', lifestyle,...), disease manifestation, disease stage, how aggressive the disease is, etc. I don't know all the factors considered.
Fortunately, I fell into the recommended 'Auto' group, likely to be receptive to my own cells after they were cleaned up.
I think there are 4 donor groups: Auto, Allo, MUD, Universal, in order of success likelyhood, therefore preference. As I remember, 'Allo' is a brother or sister with similar blood typing, next is a parent with half of the patient gene mix(pref mother over father). The final is a Universal donor that contributes stem cells which are basically compatible.
my husband is 46 and was disagnosed in June after a tooth ache that failed to go away even after a root canal. We ended up in the ER due to the Anemia, he was Septic and extreme fatigue and head aches. 24 hours later we were being told Leukemia. The hospital started Chemo in 48 hours and he had his first round a R-Chop. The 1st 40 days were spent in the hospital until we were released and 2 days later received a phone call that he was misdiagnosed and needed to be transfered to MD Anderson
He was then properly diagnosed with Diffuse large B-cell lymphoma, double-hit type with c-Myc rearrangements and BCL2 overexpression Stage IV.
He just started round 5 of his treatments which are all inpatient usually 7 - 10 day stays. They call it a 2 part Chemo R-hyper-CVAD followed by methotrexate plus cytarabine every other round. This round will be used to harvest his T-Cells for the high-dose therapy and autologous stem cell transplantation.
His Doctors at MD Anderson still call this a "grey" area cancer that they know very little about. I do understand that the data out there does not reflect a overall good prognosis because of the marker BCL2 and that the Stem Cell Transplant is his best option for a chance at remission. His overall Bone Marrow biopsies have shown no signs of the Lymphoma in the last 2 months and his last Pet Scan showed a substantial reduction in the size of noduls and tumors. We have a CT scan on the 2nd of November 2 days before we start the stem cell procedure.
The only issue we have had is getting his levels back up after the last few treatments His platelets took 5 weeks to return to 100. One day they would be up and then next will have dropped back down in to the 60's. There is some concern over his marrow being tired and suppressed due to the aggressiveness of the Chemo. We are just praying now that the Stem Cell Harvest will allow for the number of T-Cells to have a good transplant.
My prayers are with you all in your journeys
Dear Christy, I am sorry that you and your husband are dealing with this. I think that I have a very good idea of what you are experiencing. My husband is 47 years old and wad also diagnosed with DHL last August. He just finished his 6th round of chemo. Now waiting to start testing for transplant. Not looking forward to the recovery period, but very hopeful that this will work. How is your husband doing?
Hi Nicky! Bless your heart for going through all of this. Dale is doing rather well. He got his Stem cells back on the 27th The chemo wasn't as hard on him as the regular chemo's he had before this. It has been the aftermath. Chemical skin burns and major mouth and throat ulcers. He starts shots to increase the WBC count tiday and has a morphine pump which i never thought he woul agree to but, the en is near. Our goal release date is jan 15th and I can't wait to have him home. What type of tests are they doing to determine transplant? Dale was 8 weeks delayed in his stem cell transplant because of a staph infection from his central line. By the time they did a CT and Pet scan he had new lyphnode growth. Thankfully they feel like the stem cell will wipe out whatever was starting
Prayers to you and your family!
I'm very sorry to hear about your husband's diagnosis.
My father, who was diagnosed this spring (see earlier posts) just underwent his BEAM chemo and stem cell transplant (at OHSU). It appears to have gone smoothly. He is coming home on Thursday. We, too, were told that the transplant would be his best shot at staying in remission. I'll encourage him to post details about his case in this forum. I'm wishing you and your husband the best of luck. Thanks so much for sharing the details of his case.
I can't say enough good about MD Anderson, but they are still an institution. I pretty much lived there from Jan-Jun/12 with my Bcell. They gave me my washed stem cells back the day before Derby day(5/4/12).
I still have well managed nerve pain, chronic fatigue and low blood counts, but the alternative was much worse. So I'm good.
From a patient perspective, I would say the initial misdiagnosis and maltreatment delay led to your husbands current condition. Mine was originally diagnosed as Tonsillitis. RCHOP was also prescribed for me, then I walked away from it and found Anderson. Spot radiation won't resolve a systemic disease.
Bcell is VERY aggressive. The time delay to proper treatment will have allowed the disease to gain a foothold and the radiation may have put him in the weakened condition where he is today. Be warned, the treatment following the stem cell contribution is BRUTAL.
They do wonderful medical things there in Houston, but they won't help you seek redress from the brotherhood for the initial mistakes. Nor will they help you find legal representation familiar with the disease.
They also were of little help in finding financial aid. You can find it here.
Thank you for your response. This has been quite a journey to say the least. His originating doctor insisted she could handle his treatment and the R-Chop would be just fine. We were in such a whirlwind with the unexpectedness of the diagnosis that we didn't realize he had other options. We requested the transfer to MDA but, was denied at first because his Dr there told them he was under current treatment.
Can you tell me what to expect through the Stem Cell procedure? We have yet to receive information that correlates with that each doctor has told him would happen. So, it has been somewhat frustrating and extremely scary for him.
I am so glad to hear you are doing well in your recovery. The fatigue and bone pain is what is consuming him. I know Dale would be happy to just be able to leave our home for reasons other then hospital or doctor visits.
My very best wishes to Dale. He is joining a unique fraternity. These are the rites of entry.
Please be aware that the level of effort between 'what he wants to do' and 'what he can do' is orders of magnitude different. He will have an overwhelming level of fatigue to overcome before he can do anything else. He will be frustrated, so will you. Physically, KEEP HIM MOVING.
Be advised, the Stem Cell Transplant (SCT) team is different than the disease treatment physician. You will be handed to SCT then not go back to his disease treatment team until SCT declares Dale disease free. (this may take 6 months or more from the infusion date).
SCT has a prepared notebook that looks like a set of copies. It is. They hand out a LOT of these.
It is also well ordered and covers EVERYTHING SYMPTOMATICLY that CAN happen. That doesn't mean it will ('darkening and loss of finger and toenails', didnt happen to me. I got a pretty set of 5 crescents in all nailbeds corresponding to each bag of SCT chemo.) The document serves two purposes 1) inform the patient (and more importantly the caregiver, because the patient won't care!) 2) establish a defenseable, fully informed consent, position.
Your best source of information will be the SCT nurses on the floor (you should REQUIRE floor 15 or 17 from Admitting. Better to wait than not.). The rotating Doctors, and their trailers, are there to treat complications and may appear insensitive. Engage them if you can, they are interesting folks. If Dale is taking well to the treatment you won't see them a lot. That's good. The nurses have a set of standing orders, ask them what these are so you know what to ask for, when.
The SCT protocol is standard, then adapted to each patient. NO ONE will tell you what will happen because this is Dale's custom treatment and timeline. Frustrating, but go with it. He can get meds to treat the pain (and boredom. Don't be brave, ask for them). You should contact the Psych team to counsel and treat your anxiety. THIS WILL HELP DALE!
Please also be sensitive to Dale's condition. Make him get up and walk, 5 laps is a mile, 3 min a lap is a good pace. There will be a period of time after the infusion (7-10 days) during which you should NOT be at his side. The man will simply be miserable with pain and issues that he will not care to share. Make him get up and walk, 5 laps is a mile, 3 min a lap is a good pace. Make sure he has 3-5 sets of pajamas(good) or sweats(better) to sweat thru (and keep him warm. I set my room temp to 85 and was still chilled and shivering) and Gatorade for dehydration/nutrition (he won't want to eat anything but Saltines. Keep a box in his room.). Also a hat with a bill to block the overhead light and warm the bald head. Make him get up and walk, 5 laps is a mile, 3 min a lap is a good pace. There is NO laundry service, there ARE laundry facilities on the 3rd floor. Dale will NOT be allowed to leave his floor to do his laundry. Better to bag the old and open new ones.
After the infusion Dale should expect to get 1-2 bags of whole blood, 2-3 times. "We go thru it like chocolate", as it was explained to me. Welcome the event, he will feel better. Make him get up and walk, 5 laps is a mile, 3 min a lap is a good pace.
If there are kids, leave them at home. She/he doesn't need to see their Daddy like this (or bring in a disease from school to share with the other patients. A cold will kill someone in this condition).
Tell the lab team to draw blood from his hand veins, not his elbow. There are many more draw sites in the hand. They will be there 1-2 times, daily (I had 157 events total. Thats hard on a single site!). Alternate hands and REQUIRE them to use a hand needle instead of the pipe they use for elbows. Send them away if they don't have one.
Nobody sleeps in the hospital except the nurses. Use the Ambien that will be available.
Hello...my dad has also been diagnosed with double hit lymphoma. He was thought originally probably 10-12 years back to have a small area of an indolent, slow growing lymphoma. A couple of years ago it was discovered he had a transformed, diffuse large B-cell lymphoma becoming aggressive. He was treated with 6 rounds of R-CHOP and was considered in remission for a year. This past October 2012 we then discovered this is double hit. He has since started RICE and the plan was to enroll him in the trial at Dana Farber/MGH that would then do an auto followed by allo transplant. (He was originally treated at Beth Israel here in Boston but then has been with Dana Farber). However, we now know that there is no great allo match for him in the registry. His oncologist is now recommending that based on his current scan that his best option would be to move forward instead directly to an allo "mismatch" transplant--there are 2 donors I guess that can get him to an 8/10 match. There is still a small chance for a haplo transplant if my sister is a match but it sounds as though this is unlikely. This was all shocking news today and we are feeling overwhelmed and rather devastated, of course. Does anyone (Ross?) know of any other oncologists we could/should seek opinions from? (He does have someone at Sloan Kettering he has had an opinion from once the first time around when auto transplant was on the table after R-CHOP but the docs opted to hold out and hope for continued remission). I have heard Anderson in TX is fabulous--anyone specific to talk to? We are just not sure how to go from here...this would happen in 5-6 short weeks if we go forward. Thanks for any feedback you have!
Your Dad has been run thru the mill and many institutions it sounds like. I heard that story many times at MD Anderson. I was lucky, I was one of the rare ones that went there first.
My doc at MD Anderson was Frederick Hagemeister. Met him just 1 year and 12 days ago when he took on my double-hit diagnosed on 12/15. 5 months of EPOCH, an auto stem cell in May/2012 and I'm back to running for the new year. Dr. Hagemeister has been working strictly Lymphoma for some 40 years and probably has twice as many peer reviewed papers published. He is the Professor of Medicine at their Lymphoma Center. You won't go wrong there.
You can talk with his nurse at 713-792-3510. He may answer himself. Be advised, they're packed!
Thanks so much for the feedback, I will pass it along and see if we can get in touch with someone there perhaps. Any specific recommendations are so appreciated.
My husband just came home yesterday from his Stem Cell Transplant He was diagnosed in late June 2012 with double-head diffuse large B-cell lymphoma, stage IV AE He had a midsternal soft tissue mass, intra-abdominal FDG-avid lymph nodes, His bone marrow biopsy done at that time showed involvement by lymphoma with Ki-67 of 87%. His FISH analysis showed positivity for BLC2/IGH and c-Myc arrangement. He underwent 6 rounds of treatment R-hyper-CVAD. He underwent autologous stem cell transplant on 12/27/12 on protocol with conditioning regimen of gemcitabine, busulfan, melphalan, and SAHA with rituximab. He engrafted on day +8, and was discharged on 01/09/2013 only return the next morning with 102 fever. He is finally home as of last night and hoping that it stays that way.
We too are at MD Anderson His Lymphoma Dr is Jorge Romaguera and he is fabulous. He still calls at least once a week to check on how Dale is doing even after he was transfered to Stem Cell
His Stem Cell doctor is Dr. Qazilbash He was transfered mid treatment because of all the previous complications he had in October and November to the Stem Cell Chair Director Dr. Richard Champlin.
If you are able to get your Dad to Md Anderson, they are doing great things with this Grey area cancer.
Congratulations on making it out Creehill!
Qazilbash is good. He listens.
Some things you can do for your husband:
1. easy to get into/out of shoes. one size larger than normal. his feet/hands will be swollen and the neuropathy makes them super sensitive. thick hiking socks help.
2. soft, soft toothbrush. he won't know how much pressure he is applying because his hands are numb.
3. paper towels and plastic coffee mugs. because his hands are numb he won't know if he is grasping the mug secure enough. extra handles are good too.
4. he might not be able to use a spoon for soup. use the mug. food will fall off his fork because his hands may shake. use the spoon.
5. he will be walking on a pair of 'water balloons'. put extra mats in the shower and outside the tub. his feet are swollen and feel like the friction wrinkles and whorls are stretched out. he won't know when he has traction and when he doesn't.
6. I sprained an ankle, twice, because I didn't know my foot wasn't on the ground before I shifted my weight forward while walking on an uneven surface. a secure hightop boot is good for outside.
7. get a fashionable walking cane. his balance will be faulty. the hospital version makes one feel like an invalid. you need to help him push that away.
8. use the Ambien. he didn't get any sleep in the hospital. he will take several naps during the day. thats OK. You too. you can best help him if you are rested.
9. hats are stylin. his head will be cold and the sunlight is bright. something close fitting with a bill but not too tight. he won't know its too tight, look for the red forehead.
10. mind the fever but thermometers are mostly wrong. use 2-3 to take his temp. rinse them in a alcohol based mouthwash first. he will be overcoming a hypothalamic condition and be temperature sensitive. He should report feeling cold. if he is comfortable, take his temp. mine ran between 96 and 101 in the first weeks. no fever, just spikes in my temp.
11. its been a long road. he will be fussy and irritable. thats not him, its the nerve pain. use the pills.
12. stove cooking is good and its a pleasure to get back to a meal routine, but a microwave cooks everything in the bowl including bacteria.
13. the poor fellow is malnurished. lots of small feedings until his gut functions return to a semblance of normal. I feasted on melon, meat, pasta and yogurt. high protein feedings.
14. hes been on a IV bag for 6 months so his electrolytes are low. he'll salt everything. help that with some Gatorade.
Many, many more. Happy trails.
I have been looking for a happy ending. Glad I found this post. Ex husband left today for Anderson for same thing.
Please also read my note above about Dale and treatment conditions. He's in good hands at Anderson.
Thank you for your response, Creehill. I am happy to hear that your husband has come home and wish you both the best going forward.
We are trying to gather as much information as possible within a very tight time window as my dad is due to go in for his next chemo round next week and the concern is that if there should be a different plan going forward then we need opinions before that time! The ball is rolling and we are doing our best.
Just wanted to chime in and give an update on my father (see past posts) who was diagnosed last April. He had one session of R-CHOP before being switched to R-EPOCH. This was followed by a stem cell transplant (his own marrow) at Oregon Health Sciences University. One hundred days out from the transplant, they gave him a PET scan which was clean. His strength has been gradually returning and he now has what looks like a normal short hair cut. If a casual acquaintance met him, they wouldn't know he had been through such a difficult year.
DHL, thank you so much for this update. My husband was diagnosed with DLBCL about 7 weeks ago and a few weeks later they discovered that it was also double hit. He had one round of R-Chop, and like your Dad, they switched him to R-EPOCH. He does not have it in his marrow or his CNS, but they are also doing chemo spine injections and they really are pushing for the stem cell transplant after the chemo. We're so in the middle of it, that I can't see a time when he will be his old, vibrant, energetic self. But reading your post has given me such hope. Can you tell me any more about his transplant? We're still looking into it and trying to decide which kind will be most beneficial. Thank you so much for sharing!
I'm sorry that you and your family is going through this. My dad is still doing very well His energy levels remain a bit low, but that may be because the past year was fairly sedentary and, he is (thank goodness) getting older. I am going to ask him to comment here and tell you about the specifics of his transplant. He was in such good hands, with such state-of-the-art care, and did such a good job tracking the details that I was not as involved in research as I might otherwise be. In the meantime, best wishes to you and your husband.
Mr brother is on SCT day +3
I am trying to be Zen :)
It's a long road to DHL's spot Newreality, but you can see that you're on the road and not out in uncharted territory.
Remember to give the guy some space, and time for naps!
Other notes, see above. Hang in there.