Triple Hit Lymphoma

I’m so sorry to hear about your mom’s short remission.  I didn’t have triple hit but had an aggressive dlbcl and also went through da-epoch-r. I was misdiagnosed and when I complained about a rapid growing lump on my neck I was told by the ENT’s assistant that I shouldn’t worry because cancer doesn’t grow that quickly. Well as you and I both know DLBCL can and does and even the professionals can get it wrong.

I know that an early relapse can influence the prognosis but is CAR T cell possible in your mom’s situation? I had spoken to someone who had double hit and went through several different treatments before doing a CAR T trial and is currently in remission.  I’m sure that if your mom is being treated at a cancer centre the dr are or have exhausted all possibilities. 

You and your mom are in my thoughts. I pray you both have the strength to get through this very difficult period. 

Julielulie said:

She was in total remission

She was in total remission and the lump by her groin went from nothing to the size of an orange in the matter of days. So I believe that some cancers do indeed grow that fast. I think I would know what I am talking about given that I am her primary caregiver. 

you are right, the double hit and triple hit tumors grow insanely fast. The epochr put mine in remission. Can they give her epochr again?  Are you able to get her to MDAnderson?  My thoughts are with you. I know your mother is so grateful for all you and your brother do.i

Ctal23 said:

Desperate plea

my mother was just diagnosed with triple hit lymphoma.  She is my only family and my whole world.  I am autistic and losing her would essentially end any semblance of a life I have.  Julie, or anyone, are there any new treatments that have been found to be usefull?

Dear Ctal, I am so, so sorry to hear this.  It must be very hard for you, but at this point (just diagnosed) there is no reason to assume the worst possible outcome for her.  She has treatment options and they are probably not the really difficult ones that Julie is alluding to above.  It sounds as though she already has an Oncologist, is that correct?  If not, she should get one, preferably a "Hemato-oncologist", one that specializes in blood cancers. That doctor/clinic will most likely guide her treatment according to protocols established by the National Cancer Institute.  First treatments may cure her completely.  Right now, focus on that.

For yourself, you need to reach out to whatever support services are available to you in your community.  Your mom is going to need your help and maybe the help of others during her treatment.  She may be in the hospital for 5 or 6 days at a time. But maybe only one afternoon; it depends on her treatment.  If you cannot live alone during those times, now is the time to seek solutions for that. Maybe start that process here at the ACS Treatment & Support pages:  https://www.cancer.org/treatment.html  Talk to your church if you have one, your therapist if you have one, her friends, your friends, and the clinic where she is being seen for more guidance. Wishing you are your mom the very best going forward.

Julielulie said:

There are three medical

There are three medical options for further treatment but all three have horrible side effects and can lead to death via side effects and have been shown to positivly impact only about 10% of ppl and this positive is usually only an additonal month or two.

i hope that whatever has happened with your mom, you are ok.  It is unfair that these things can happen, to our mothers, to us as daughters.  My heart goes out to you and hope you are doing as well as possible ❤️

Evarista said:

R-CHOP vs R-EPOCH

Hi Ctal, sounds as though thing are very difficult for you right now.  Hopefully someone more experienced than me will have additional input.  Based on your description, I have to wonder if your mother's doctor has very good reasons for selecting R-CHOP instead of R-EPOCH at this point? The R-EPOCH regimen is brutal, at least in my experience.  Your mother's doctor may be concerned that she is not strong enough to tolerate it.

If you look through the threads here (there's one just above/below from "Bill"), it seems that many people with DLBCL get R-CHOP.  You can also find discussion on intravenous methotrexate as an alternative to intrathecal.  So maybe the plan is to minimize the toxicty to her with R-CHOP + MTX?  There was also a discussion not too long ago about the relative efficacy of R-CHOP vs. R-EPOCH and that sometimes the harder R-EPOCH protocol is not warranted. So the idea that "every other consensus on the planet, that it should be epoch" maybe not be the case for each and every patient.

MSKCC is highly ranked, as you know. You may be able to get a second opinion right there, but delaying her treatment really does not sound like a good idea to me.  Getting her into remission as quickly as possible is the goal here. Good luck.

Thanks again for your response.  i totally agree about not delaying treatment.  So we never did, she is contuing with the rchop on schedule.  It’s just that I want her to switch to epoch since she’s triple hit.  I know it seems tough but she is willing to fight.  I just hope I either get consensus and explanation from the second opinion why rchop is better for triple hit in this one rare instance, or, that he agrees epoch is the way to go and give the methotrexate without insisting on an ommaya reservoir.  Where is the thread you mentioned?

ShadyGuy said:

Check up

it seems very unlikely to me, but if you want to see if your physician is being tempted to use a certain drug regimen to get payments from a drug company try this.( https://projects.propublica.org/docdollars/ )  For example some docs get huge kickbacks for over prescribing opioids.  Just type in his/her name. Try it with and without middle initial. Most physicians would never even consider this. One in a thousand would. My onc is clean with nothing more than a few meals for under $50. I did check one Russian-born oncologist in the Seattle area. He/she received several tens of thousands in 2016 for speaking engagements about a drug for which the large drug company was being sued for fraud. This onc was also an expert witness in the trial. This person probably did nothing wrong or illegal but if this was my oncologist I would definitely ask him/her about it. Just a thought. RCHOP and R-EPOCH drugs are pretty generic. I think it is very important to trust your physician when your life is on the line. An honest doctor will not be offended by you asking about his/her relations to drug companies.

R-CHOP IS R-EPOCH, with one drug added: Etopophos. The other five drugs are all identical.

(It would be easier for patients to see this if the medical community had written EPOCH as 'ECHOP' instead.)

While the addition or deletion of one drug in a chemo combination can often be significant in how the group works together, intuitively it would seem that the difference would not be dramatic.

She luckily is at possibly the best cancer center in the US, if not the world. Any oncologist on staff there is going to have all of his marbles.  Sloan-Kettering developed the first chemo drug ever, Mustargen, in partnership with the DOD and US Army during World War II.  They have done chemo longer than anyone.

I find the comment above that the doctor may not feel she can endure the rigor of R-EPOCH to be cogent.  While very similiar to R-CHOP, it is routinely described as extremely harsh. And applications require a three-day inpatient stay for most patients, although some patients here do report getting their infusions as outpatients.

My next-door neighbor did six months of R-EPOCH and went from around 300 pounds to about 140, and could not walk after his first month of applications (had to be carried to his car; fortunately, his room-mate was a body builder).  He did not stand up unaided for the remaining five months of chemo.... And two years after ending R-EPOCH, despite the fact that he was only around 35 years of age, and otherwise in perfect health, he had to have both hips replaced. Surgeons said that the drugs had starved the blood supply to his hips, and added that this is not uncommon with EPOCH, although I have not read such accounts here before. Also, I have not seen a warning of this at the drugs' websites.

I once asked my own oncologst what drugs I would receive if I relapsed, and he said 'ICE,' with stem cell transplantation possibly added.   He then added that "ICE is an extremly harsh experience."  I mention this because ICE also contains Etopophos, and may account for some of the harshness he mentioned.

Let us hope for now that the chosen drugs work well and get her returned to health.  Fretting over this after the doctor has denied your suggestion can't be good for your emotional well-being. You are doing all that you can at this moment in the process,

max

Thank you to everyone who wrote.  I fear you are all right, that it is due to epoch being too tough.  One week after her first rchop she was hospitalized for neutropenic fever.  She had her second treatment last tuesday.  Then this Tuesday, she was back in the hospital due to neutropenic fever.  I still scheduled for the second opinion because I always think it’s a good idea anyway.  But I now no longer hope for epoch.  With that said, it is devastating to think that with all the high risk factors she has, she will be getting the weaker treatment.  I am grateful for those of you who sent well wishes and hopes that in spite of everything, the treatnent will be enough.

My nephew 12 year old diagnosed with triple hit lymphoma . Any integer with same diagnosis . Please help