I'm lost...I thought I joined a group titled Triple Hit Lymphoma. It's a very rare type on Non Hodgkins and not finding much out there in the web about it. My 45YO niece was just diagnosed with it in stage 4b. Anyone else here with the THL in stage 4?
We have no one with triple Hit Lymphoma but JP is excellent at explaining double hit Lymphoma. He well may know about your type.
Thanks, rascal1. Any info would be appreciated.
@redbird107
I have doublehit but when I was diagnosed, my oncologist had another patient that was diagnosed with triple hit a month earlier. We have gone through this process together since January 2013. We both received RhyperCVAD and subsequent bone marrow transplants at Moffitt, although I had and allogeneic and he had an autologic.
We both are in remission with minor treatment related complications.
Double hit is rare; triple hit even more so. I am 99.9999% confident that any oncologist is going to treat the two the same. Check out the double hit thread here on SupportGroup as well as the DoubleHitLymphoma foundation's website.
Thanks for your input, Tainted. That's encouraging info. Her's is super aggressive. Her oncologist wanted her to get another opinion on treatment and recommended either Hershey or John's Hopkins. She opted for Hershey since it's close. But I fired off an email to John's Hopkins yesterday asking if their Lymphoma expert could at least review her records and test results and give their opinion on xment. Hoping they will. Her oncologist wanted to add some injections into her spine along with the chemo but fears she's not strong enough to sustain it. She's already between 110-115# and has only had her 2nd chemo xment a few days ago. Anyway, thanks for the info. I'll pass it on to her hubby.
@redbird107 … define super aggressive 
I think most any double or triple hit lymphoma is super aggressive. I felt perfectly healthy a month before my diagnosis. But the PET scan revealed a grapefruit sized tumor in my abdomen. The lymphoma had spread to my chest, throat, jaw, both arms and legs. I was stage 4b. My triple hit buddy’s story is similar. I was 35 when diagnosed. He was 48.
Did the spinal injections. They gave me wicked headaches. Besides that I don’t remember them being any tougher than the rest of chemo.
I’m glad you have reached out to John Hopkins. My feeling is that all of the major cancer institutions will suggest an aggressive chemo regimen followed by a bone marrow transplant, if she is healthy enough for it. Where they will probably differ is on which aggressive chemo regimen they would use (RhyperCVAD vs M-CODOX, etc.).
I know this is very scary stuff…but there are a lot of survivors out there.
@redbird107... I'm sorry to hear about your niece's diagnosis with THL. As @tainted and @rascal1 mentioned, we have posts dedicated to Double-Hit lymphoma patients. I've been contributing and managing Double-Hit lymphoma discussions since 2012, and SG has had over 30 members, patients and pt's caregivers, who have shared their experiences with DHL. There is one member who had been diagnosed with THL (positive for Bcl-6, Bcl-2 & c-Myc), in addition to the patient @Tainted mentioned with THL. One of the THL patients underwent allo-SCT; the other patient with stage IIB did auto-SCT following high-dose chemo regimen.
Here is link to the current DHL post is provided below:
http://www.supportgroups.com/non-hodgkins-lymphoma/double-hit-lymphoma-thread-6-started-on-apr14
I will be starting a new post this week--it will be a continuation from the most recent thread started in April 2014. Recent advances with the introduction of Rituxan & other therapies accompanying chemo regimens have increased long-term survival rates, while simultaneously lowering risks of recurrence. That said DHL and THL are relatively new in the Dx & Tx of highly aggressive lymphomas. There is no consensus as to the preferred treatment, so oncologists are likely to treat DHL and THL the same way, depending on the staging. When you do introduce yourself to the above link, it would be helpful to include the following:
*When your niece was diagnosed
*Where were the tumor/masses discovered (i.e. shoulder; abdomen)
*Did you know the results of her CNS & bone marrow biopsy?
*Did she get a 2nd opinion? If so, was Dx and/or Tx confirmed/differed?
*What treatment has she started on?
This will help put into perspective our own experiences upon offering insights. Hope to hear from you again. Best wishes, JP
@redbird107... BTW, I was diagnosed with DHL in July 2012. The bulky mass was in my mesentery, behind the abdomen/near the bowels. Staging was clinically High Grade IIB; however, given the aggressive growth of the tumor, it was treated with the urgency of stage IV. My BMB & CNS were clean. I did 6 cycles of DA R-EPOCH with CNS prophylaxis from Aug - Dec 2012 followed by a consolidation High-Dose chemo with R-IVAC + IT & R-HD Methotrexate (4 cycles) from Jan - Mar 2013. I've been in remission since Dec 2012. And I get my next CT scan in two weeks!
Like your niece, I am in my mid 40's (42 y/o when diagnosed). I was in good shape going into treatment. I did not pursue SCT even though MSKCC urged doing so. And I found out last week that SCCA would have recommended it as well. Both are well-respected cancer institutions esp. in lymphoma treatment, but it doesn't mean their onc know all the answers--certainly not when it comes to DH & TH. The one agreement among many lymphoma clinicians, who have studied Burkitt's & DHL, is that highly aggressive lymphomas respond best when countered with equally aggressive chemo administered in very high doses over shorter intervals (like M-CODOX/IVAC & R-HyperCVAD); as opposed to R-EPOCH or R-CHOP (which are most effective in treating DLBCL).
You mentioned spinal injections...referred to as intrathecal chemotherapy (IT). I received 13 injections in total: one LP (spinal tap) & 12 via the Ommaya Reservoir (dome implanted in the brain, attached to a catheter). I endured the IT (intended as CNS prophylaxis) in addition to I.V. HDC. That's not to say everyone can do this. Notwithstanding your niece's health (aside from THL) & given her age it is doable to receive IT and HD-IV. TH & DH are so highly aggressive: the cancer will look for an escape route into the CNS, which the IV chemo cannot penetrate, courtesy of the blood-brain barrier. When I.V. chemo is administered in extremely high doses (sometimes in gm instead of mg), it may actually cross the blood-brain barrier into the CSF. It is not an exact science, and a second, if not a third, opinion is crucial in determining the best course of action. Hope this is helpful & not too overwhelming. And please feel free to reach out to us on the DHL thread. JP
http://www.supportgroups.com/non-hodgkins-lymphoma/double-hit-lymphoma-thread-6-started-on-apr14
@JP_NHL Thanks JP!!! I’ve forwarded your posts to my niece’s husband. He’s the one that would have all that information. This is awesome!
If my memory serves me right, my headaches occurred when I had spinal injections of Cytarabine (although I'm not 100% on which drug it was). One potential side effect is swelling of the brain lining. Those headaches are the only pain I can remember bringing me to tears in my adult life. Staying horizontal and drinking caffeine were the recommended solution and they helped tremendously.
However, if she hasn't had spinal injections yet, her headaches are most likely caused by something else. The only other headaches I had were related to hydration. They had me drinking a gallon of fluid per day. And even then, sometimes I needed IV fluids. After a bag of fluid, I always felt better.
Redbird, that is alarming. The only thing that I have found to be just about universally accepted in treating this disease: R-CHOP doesn't work. However, I have never seen it combined with intrathecal chemo (aka lumbar puncture/spinal injection/spinal tap).
I know that JP will be able to confirm this or provide an update if things have changed. I would be pushing hard for that second opinion from Johns Hopkins ASAP.
@Redbird107... Admittedly there's a lot running through my head right now...I'll try to articulate my thoughts as best as I can. Like @Tainted, I'm surprised they're starting your niece on R-CHOP. Before I explain myself, please know that I'm not a medical expert, even if it sounds like I know my stuff...that's in part b/c of my market research background, and my persistence to ask questions. I had no other choice being single & living on my own; I managed my own healthcare, appointments, meds, etc. That said let me share what I've dug up on treatment of aggressive lymphomas in the next post...
1 Heart
CHOP is the old standby for the treatment of aggressive lymphomas like Diffuse Large B-cell lymphoma. The most common b-cell mutation is BCL-2. Years ago, the 5-year survival rate with CHOP was considered the most promising, but it wasn't great (initially the bar was set relatively low). The introduction of Rituxan, antineoplastic monoclonal antibody, was a game changer in the chemo induction of DLBCL. Adding "R" to "CHOP" (R-CHOP) improved the overall survival rates of patients (all things being equal with respect to age, health, staging). Meanwhile, another chemo agent, etoposide, was shown to work well with CHOP in the treatment of DLBCL. Gradually, through clinical tests & published results, R-EPOCH became the choice for many in the eradication of DLBCL. So it went from CHOP to R-CHOP to R-EPOCH. Then R-EPOCH was modified to include CNS prophylaxis (intrathecal chemo in the CSF; a.k.a. lumbar punctures or Ommaya Reservoir), and doses were adjusted to ensure the patients became neutropenic (ANC dropped to near zero) without compromising the patient's health. This is referred to as dose-adjusted or DA R-EPOCH + IT.
DA R-EPOCH + IT is the regimen I started with, but I knew it would not be enough even though I achieved remission after 6 cycles. That's b/c DH & TH are "highly" aggressive lymphoma. What you might refer to as "super" aggressive. What makes it so much more aggressive than DLBCL is the addition of C-myc mutation, linked to Burkitt's. In tandem these translocations pose a greater risk to the patient. In even rarer cases, a patient may have three translocations: BCL-2, BCL-6 (less common) & C-Myc. This is THL.
This is why I'm not convinced that R-CHOP or DA R-EPOCH + IT is enough for long-term success, even if remission is achieved early on. Moreover, I have not heard of intrathecal chemo combined with R-CHOP...why not go with a more proven regimen like DA R-EPOCH with CNS prophylaxis?
Bottom line: Please get a second opinion. And please keep us posted. We're here to help in any way we can. JP
@Redbird107... One other thing I would like to share based on my experiences having visited and been treated at a few hospitals and cancer centers. It's not necessarily about which facility is closer, but which hospital will provide the best cancer care for short-term and long-term success. Understandably, it's not as simple as going to the most preferred institution based on reputation & success.
For what it's worth John Hopkins is ranked #5 for cancer care in the nation. Hershey is not ranked among the top 50 U.S. hospital in the treatment of cancer. The evaluations are not gospel. For example, there is no score for long-term survival rates. But it is useful in determining which facility will likely take better care of a cancer patient during treatment.
You can look up the hospitals here: http://health.usnews.com/best-hospitals/rankings/cancer
MSKCC is ranked #1, but I did agree with their recommendation for auto-SCT. Initially, I was treated at Englewood Hospital Med Ctr, unranked but close to where my parents lived. The nurses there are very good, but the facility was not as well-equipped to handle lymphoma patients. Also some of the nurses in the oncology ward had on too much perfume/cologne. I had to ask them not to put it on, as it made me more nauseous than the chemo. I felt like I was upgraded to a 5-star hotel when I went to Hackensack Univ. Med Ctr (ranked #1 in NJ; #4 in NYC metro) for additional HDC. The registration process at HUMC was way smoother. And I did not run into an issue with potent fragrance at HUMC. I was impressed with SCCA to see the entire building is "fragrance free". The seemingly little things can make a big difference.
@Redbird107... Please feel free to reach out to The Double Hit Lymphoma Foundation. I've met with them. They're a great group of people. Jill Folan runs the foundation. Her husband, Mike Folan, is a DHL survivor. Dr. Adam Petrich is part of TDHLF, and was the onc for Jill's husband. They have another great oncologist on their team.
Here's their site: http://www.tdhlf.org/
A couple of SG members have shared their stories with TDHLF. JP
JP, you have been awesome with all this info. I am passing it along to Dawn's husband.
@redbird107
Sorry to be so late stepping into the conversation – somehow, I missed all this. I just want to echo JP and Tainted – This type of lymphoma is extremely aggressive, and I would strongly recommend a second opinion about the chemo regimen – and that second opinion should come from a cancer center or comprehensive cancer center (the National Cancer Institute has a registry) with doctors who have experience with double- and triple-hit lymphoma, and access to the global registry of as-yet unpublished information. As @Tainted said, from what I know (and like JP, I am not a medical professional), the consensus is that R-CHOP does not work well for this cancer.
Again – it is important that she consult with someone who has experience and who is in contact with other doctors globally who treat DHL and THL. It takes a long time for the latest information to hit the medical journals – and that information is generally out of date in regard to this lymphoma.
I’m concerned about the headaches – especially if she doesn’t have a history of migraines/headaches, and if she hasn’t had any intrathecal chemo. She needs to be carefully checked to make sure that the cancer has not spread into the central nervous system. I’ve known folks whose cancer spread to the brain, and it is treatable – the folks I know who struggled with this are doing fine now. But she needs to be where the doctors know what they are looking for and what to do about it. This is not something regular oncologists generally deal with. Getting to someone who knows what to do is crucial.
Once that is ruled out –
Chemo messes with your electrolyte levels. Sometimes that shows up in blood work and sometimes it doesn’t. Magnesium citrate can really help with the headaches.
Hoping for the best for her!
PS – I had Stage IV DHL with 60% bone marrow involvement. I had the intrathecal chemo, both methotrexate and cytarabine, and had no immediate physical side effects. It’s important to protect the brain. I was 49 at diagnosis, am female, and am now over 2 1/2 years post-stem cell transplant, after R-HyperCVAD+.
He is super in passing on positive informative info. You get the straight facts and rationals to go with them and I know he has researched his material very well!! Thanks JP for all you do!
You're welcome...I'm one of many contributors who help make SG a vital source for support & insight. Many SG members, including @stormdancer, have been helpful in sharing their experiences esp. with respect to stem cell transplant. And @tainted told us about TDHLF.org earlier this year. And thank you @rascal1 for all you do!
@JP_NHL Thanks!