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Triple Hit Lymphoma

Julielulie
Posts: 4
Joined: Jan 2018

My mom was dx with THL in June 2017; she underwent six rounds of chemo and as of her last check in at the cancer center (11/29) she was in remission . That being said, today at her follow up with her pcp (she has been in heavy duty pain meds since two weeks out of chemo due to severe pain in her head and port hole area on her chest) and she told him there was a lump near her left groin area. She laid on the bed and I could see the protruding lump, then the doctor had me feel it. It is about the size of an average orange and moves around easil. Her pcp ordered an MRI and put in a message to her oncologist. I am just here looking for support. I am tired. During my mom’s chemo, my older brother had a massive heart and died, my younger brother and I have been caring for my mom with me being the hands on caregiver and him doing more of the finances and things like that. Any suggestions on how to do this again? Any points to support groups would be great. (Please excuse any typo, I will not utilize this forum on my phone in the future; I will use my laptop because it doesn’t seem very phone  friendly.) 

 

Update: It is the cancer returned. Her prognosis is very poor.

thanks, Julie’s 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

Julie,

As I read your post (correct me if I'm wrong), your mom was verified cancer free four days after Christmas (12/29), and now seven days later has a tumor the size of an orange ?

No cancer grows that fast, especially from a condition of total remission. A cancer that aggressive would never go in to total remission.  Whatever it is, it is not Lymphoma.   Odd, so please do update on what the doctors determine.

max

Julielulie
Posts: 4
Joined: Jan 2018

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. 

Luckyp
Posts: 11
Joined: Feb 2018

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

Julielulie
Posts: 4
Joined: Jan 2018

She finished epoch chemo on 10/19 and as of her follow up with her oncologist appt in 11/29 she was in remission; she is formally no longer in remission as of yesterday when she saw her oncologist. And the tumors from Triple Hit Lymphoma can go from nothing to a baseball in 48 hours because of the extreme aggressiveness of THL. She was initially dx when she had a golf ball size tumor triple in size overnight. So, I beg to differ about the speed of growth because I witnessed the lumps extremely fast growth firsthand this summer and this week. Her prognosis is a few weeks to a couple of months. The aggressive nature of T is why most who have this die quickly because it is so fast growing. 

Tropical
Posts: 6
Joined: Nov 2017

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. 

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

I am so sorry about the aggressive nature of your mom's lymphoma. And please accept my condolences on the loss of your brother. That must be especially difficult for your mom--dealing with extreme pain on top of losing her son. 

Do you think another opinion is warranted? Another Cancer Center? There are many cases of very aggressive lymphoma being put into remission. There is much reason for hope!

I hear you that you are tired. Perhaps a Social Worker at your Cancer Center can help arrange some respite care for you? 

I honor the love and care you show for your Mother. You are in my thoughts and prayers.

Hugs, 

Rocquie

Julielulie
Posts: 4
Joined: Jan 2018

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.

Ctal23
Posts: 5
Joined: Jul 2018

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 ❤️

Margerite63
Posts: 1
Joined: Feb 2018

Julie i am sorry you are going through this , you and your brother are a blessing to your mom , stand strong , prayers are on the way ..

 

Ctal23
Posts: 5
Joined: Jul 2018

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?

Evarista
Posts: 266
Joined: May 2017

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.

Pbksdk
Posts: 4
Joined: Aug 2018

Bendamustine and Obituzumab immedia dissolved lesions. Gallin study dr. Laurie Sehn you tube 

Ctal23
Posts: 5
Joined: Jul 2018

thank you Evarista,

i am very conflicted but I know ruminating till I throw up is not helpful so I’m trying to be hopeful.  But it is so hard.  She was found at stage four diffuse large B cell.  Then a week later the genetic testing came back as triple hit, my world was annihilated. She is at memorial Sloan on and off.  The problem is the oncologist only wants her on rchop contrary to every other consensus on the planet, that it should be epoch.  Rchop with methotrexate is what his rigid treatment plan is.  I have argued for epoch but he says the ONLY way to do epoch and methotrexate is to put a reservoir in her brain and he will not do it.  And I don’t want a reservoir put into her brain either.  Yet everywhere I look, epoch and methotrexate are given without this horrific reservoir.  If she is to get epoch, she has to get a new dr.  But memorial Sloan is supposed to be the second best cancer hospital in the nation.  I am so so confused.  I’m trying to get her a second opinion at Weill Cornell.  If anyone has any thoughts please share.  She is my only family.  I am breaking down every day.  I am her only family.  And I was on disability before for having aspergers and being on the autism spectrum, unable to work.  Now, as a person who could barely take care of myself (I also have Sjögren’s syndrome, neuropathy, and chronic fatigue) I have to be the caretaker for my very ill mother.  I thought I could hold on but when the dr told me his treatment plan, I just feel it all unraveling.  I need something to give, I want her to get epoch with methotrexate without the reservoir without having to switch hospitals.  But it isn’t going to happen.  Does anyone know if Weill Cornell gives the treatment I’m looking for?

Evarista
Posts: 266
Joined: May 2017

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.

Ctal23
Posts: 5
Joined: Jul 2018

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
Posts: 420
Joined: Jan 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

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

 

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

Greetings,

 

I am sorry to hear about your mom's diagnosis and your situation.  Although, I did not have triple hit, I did have a very aggressive DLBCL with a suspicion that it may have infiltrated my brain.  I was treated at one of, if not, the top centers in the World-MD Anderson in Houston, TX.  My team chose 6 rounds of DA-R-EPOCH, 11 or 12 intrathecal infusions of alternating Methotrexate  and Cytarabine, and 2 consolidation rounds of High Dose Methotrexate (HD MTX) for my treatment.  The DA-R-EPOCH requires 5-day hospitalizations each time and the HD MTX required about 4 days in the hospital.  I have been officially in Remission for 6 months now. Every case is different, but I know MSKCC is a top facility, so I have to believe your mom's doctor has good reasons for not prescribing the Etoposide as part of her treatment.  I was an otherwise very healthy 53 yr. old when I was diagnosed and my treatment was progressively harder and harder on my body.  The first one was the easiest and for my most recent birthday I was in-patient getting my 6th round of R-EPOCH and my first and only blood transfusion due to low platelet counts.  I am sending positive energy and hoping for a good outcome for you and your mom!

Sincerely,

Diane

Ctal23
Posts: 5
Joined: Jul 2018

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.

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