Hi, and welcome to these boards. It's a place none of us ever wanted to be, but it is a great place for advice and support, so I'm glad you found it.
My daughter has a different T-cell lymphoma, Anaplastic Large Cell Lymphoma. Many of the parents here have children with Acute Lymphoblastic Leukemia - as I understand it, very very similar with similar treatment. (has to do with the percentage of blasts in the bone marrow?)
I'm sure you'll find lots of caregivers here who can help.
Just wanted to say welcome, and let you know you aren't alone.
Thank you for the welcome. Emma's lymphoma caused a mass in her chest that collapsed her windpipe. She was on the ventilator for 2 1/2 weeks. This is how she was diagnosed. The doctors told us that they only see 2 children a year come in with lymphoblastic lymphoma (at St. Jude). But they said not catching until its at this point was not uncommon. I guess I really want to hear someone else's story, and how they dealt with this. Compare notes, you know?
My son, Joey, was diagnosed with high risk T-Cell Acute Lympohoblastic Leukemia, not Lymphoma, in August of 2008, but he also had a large mass in his chest. It was a mass of cells not a turmor. His was on his breastbone and delayed inserting a broviac line for 3 days b/c they were afraid that his chest would cave in while he was unconscious. He had 12 different i.v's done those first 3 days. Joey presented with a wbc of 336,000 which peaked at 364,000 in the PICU. Miraculously, he was sent to the regular hemonc floor the day after his broviac was placed and went into remission 3 days later. He was in the hospital for about 11 days. He has been hospitalized twice since for 4 days each time. That first year he only went to school a handfull of times but had a Home/Hospital teacher. This last year he made it to school about 60% of the time.
Joey started long term maintenance May of 2009 and is scheduled, God willing, to go off treatment Dec. of 2011. To be honest, I can never remember the name of his protocal but I can look it up if you'd like. He is being treated at Children's National Medical Center in Washington, DC and had his radiation at Univ. of Md Medical Center.
We don't do CaringBridge but here's the link to his Team Joey site if you'd like to join and read the early messages. I only post about once a month now, but was on several times a day the first few weeks and several times a week for months after that. https://lls.lotsahelpinghands.com/c/606630/
Hello, My Dauaghter has Acute Lymphoblastic Lymphoma. Not unlike your story. She was diagnosed the day before her second birthday. She had been treated for pneumonia for 3 weeks prior to diagnosis. She had a huge tumor in her chest that had collapsed both lungs. The day they started chemotherapy she was breathing on 1/4 of one lung. They said the tumor was the size of a football. We have completed 8 months of intensive chemo and hopefully starts maintenance tomorrow, which she stays on for 2 years. Hope things are traveling ok for you.
I know of 2 families whose children (teens) had the same lymphoma - both presented with large tumors in the chest, as your daughter did. I can't tell you much about their day to day experiences - one is a family at our hospital, and another is someone I've met recently and they've mostly been a great source of encouragement because their son is 4 years in remission and doing wonderfully.
Welcome, and so sorry you have to be here. My son has T-cell Acute lymphoblastic leukemia. We don't know anyone with t-cell lymphoma. Not sure how similar the treatment is. We spent our first week in the PICU also. Patrik had a WBC of 456,000 and needed apheresis to lower it. We are now 21 months into treatment with 19 months left to go. We are on the COG AALL 0434 protocol. I hope treatment is going well. Best of luck
Mom to Patrik dx T-cell ALL 11/17/08
I'm not sure what Emma's wbc count was at diagnosis. In fact, I don't know if they ever even told us. I know that they protocol she is on is the same they use at St. jude for treating ALL. It is protocol 16, ALL standard risk. It appears no one else who's answered has used it? Hmmm. Maybe I'm wrong!
My son, Noah (age 7) was diagnosed with T-cell lymphoblastic lymphoma-stage IV in October 08. He was CNS positive at diagnosis. We are on protocol COG 5971 Arm B1. He also had 9 days of cranial radiation since he was CNS positive. We are 2 1/2 months till OT. Feel free to ask me any question.
www.caringbridge/visit/noahjacobs (just started his caringbridge site a couple months ago)
I'm not sure about the staging. I was told that it was either stage 3 or stage 4 because of where the tumor was (in the chest), but her spinal fluid and bone marrow were both clear. So that meant that she didn't have to have as many bone marrow aspirates or any radiation, although they still did spinal procedures where they injected her spinal fluid with chemo.
Her white blood count at time of diagnosis was 15,000. No where near what the ALL kids are.
I do not know the name of the protocol, only that it is the standard protocol used by ACOG (?) for ALL. A period of induction, followeed by consolidation, then interim maintenance then re-induction/re-consolidation, and then maintenance. A 2 yeear protocol (because she is a girl). The drugs used: vincristine, cytarabine (ARA-C), cyclophosphomide, methotrexate (injected into spine), high-dose methotrexate (done in-patient), methotrexate (tablets during maintenance), mercaptopurine, steroids, thiaguanine. Hmmm. I am probably missing something, but that is what I remember off the top of my head. The doctors gave me a sheet of paper which outlined the days and what she was having on what days for each stage of treatment. Very involved.
We were very blessed in that Grace handled the chemo very well. The first month was hardest, then she started to feel better. The second hardest part was re-induction/re-consolidation. At one point, she was having platelet transfusions every other day. She had an anaphylactic reaction to the first transfusion, which was terrifying, but that was really the only rough patch through the 2 years. Right now we have 2 kids in our clinic who have had serious reactions to the methotrexate.
My daughter was diagnosed with acute t-cell lymphoblastic lymphoma 2 years ago when she was 6 years old. She JUST finished her treatment on August 1st, and we go in for an out-of-treatment conference with her care team this Wednesday. She is now 8 years old. I am happy to share with you anything about her treatment. I know how it is to feel like you're the only one out there with this same diagnosis. In 2 years, I only found 2 other kids with this: one was a boy who was ending treatment up north, and one is a 3 year old boy who has just begun treatment in Alabama. Thankfully, it appears to be a rare one, but sometimes it is nice to compare notes with someone who is going through the exact same thing.
My daughter's caringbridge site is www.caringbridge.org/visit/graciefloyd
My son was T cell lymphoblastic lymphoma, this disease is the same exact malignancy as T cell ALL, the only difference is with the lymphoma it presents in the lymph system and not the peripheral blood like ALL. These kids usually present with a completely normal CBC at diagnosis versus the ALL kids present with high white counts. This disease has a better prognosis when it presents above the diaphragm versus below the diaphragm. I'm not sure as to why, I suspect because there are less lymph nodes in that area to be involved. Many times you will hear this referred to as T cell LBL/ALL. Often Dr.'s would refer to my son as T cell ALL patient because they are the same malignancies. My son relapsed in the CNS and required a stem cell transplant at that time we went to MD Anderson in Texas because they are the leaders in leukemia's and lymphoma once there my son was treated in the leukemia department instead of the lymphoma department because they considered it leukemia. The protocols are usually identical to the ALL kids and rightfully so since it is the same malignancy. With most lymphoma kids their bone marrow is usually clean. The T cell portion of this lymphoma is what makes it so aggressive, but because it is so aggressive it usually responds well to treatment. Very important, is that if it is a male they require 3 years of treatment versus a girl who only requires two because males have a higher relapse rate. Kids tend to fair better with this disease than the young adults, again I am not sure why, but overall young adults fall in a poorer prognostic group for most cancers. Of course if you are not being treated at a major cancer center than I would recommend you go to one. We considered St. Jude's for my son's transplant. All in all the odds are good, the treatment is tough but you can get through it. Today my son will be 5 years since diagnosis and 4 years post transplant, he is now 25, and if you met him you would never guess he was ever so ill. I wanted to just chime in and let you know that you will be going through the same treatment as the ALL kids and therefore will have much in common with them.
My daughter, Madeline, was 4 when she was diagnosed. She had a slight cough which progressed to slightly raspy breathing. We got a chest x-ray and could see her mediastinal mass. She is now 2 years off chemo and is doing fabulously. She has had no late term effects, so far, with the exception of an anxiety problem that manifests itself once in a while. She is a happy, healthy almost 9 year old with a bunch of newly curly hair, it's nearly as long as it was when it all fell out.
They didn't stage her but according to my research she's stage 3. She didn't have CNS involvement.
My 7 year old daughter Kathryn was diagnosed with T-cell Acute lymphoblastic leukemia in Sept of 09 with a WBC of 750,000 and a mass in her chest.... She has gone through the last year of chemo so good with minimal side effects. Now we're just getting ready to fight a new battle..... last week she was dignosed withT-cell lymphoblastic lymphoma. Even with this set back, Kathryn has done so well with everything. Check out her story on her caringbridge site
Good luck with your journey.
My 14yrs son has Precursor T cell Lymphoblastic Lymphoma Stage 3...
Just read about MRD in ALL.....Do we have the MRD in LBL also,,,,
Has anyone done these tests......
Can we lymphoblastic Lymphoma parents get counted in this fourm and do research on LBL also.......
My son was diagnosed with T-cell lymphoblastic lymphoma on Dec 25, 2010. He is currently in IM on COG study 434. His mediastinal mass was enormous (13x13 cm) but no bone marrow or CNS involvement. His mass is mostly gone - only a small piece remained on day 30 (1x1.5 cm) which the doctor believes is really just a bunch of dead cells which should be re-absorbed by his body soon. He is being treated at Lucille Packard Children's Hospital (Stanford). He had a MRD measurement taken at diagnosis which came out clean down to their detection limit, which I believe was .01%. They took fluid from his lung and were able to see that he does not have the Philadelphia mutation, but they weren't able to get a full cytogenetic report. They said that the cells weren't dividing, so they couldn't tell me much more. They didn't seem to worry about his staging, just his risk assessment, which was standard. When I pressed them, they said probably stage II.
The below is St Judes staging-
The lymphoma is in only one place, either as a single tumor not in lymph nodes or in lymph nodes in one part of the body (the neck, groin, underarm, etc.). The lymphoma is not in the chest or abdomen.
Stage II lymphomas are not in the chest, and one of the following applies:
For stage III lymphomas, one of the following applies:
The lymphoma is in the central nervous system (brain or spinal cord) or the bone marrow when it is first found. (If more than 25% of the bone marrow is abnormal cells, the cancer is classified as leukemia instead of lymphoma.).
Incase the BM and CNS is not involved it has to be below stage 4.....My son had the same...but stage 3 as it was in many lymphnodes.....in mediastnum and one node in cervical......also it was both above and below the diaphragm,,,,
As per my undersytanding in Remission MRD shall be done....to check whether relapse can happen or not.....not at dx
This sounds just like my son's experience so far (diagnosed Aug 2011), right down to the very small bit left on day 30. He is on COG 0434 too, but his arm gets HD MTX. I was surprised to see that your Dr said little chance of relapse. I'd love to hear that! Our Dr just says everything is looking very good. Gavin is labeled as High Risk, only due to the fact that his pediatrician had him on steroids (prednislone) for 3 weeks on and off before he was diagnosed. She thought he just had athsma. His only symptom was incredibly loud breathing (on inhale) at night. After knowing the pre-curser symptoms, I remembered that he was also complaining of an itchy back at night a few months before diagnosis. What type of side effects has your son had to the chemo so far?
Thanks for posting that! I never saw a lymphoma-specific staging chart. It looks like my son must be stage III since his lymphoma started in the chest. In his case, the CT scan didn't show other nodes involved, but that isn't a very sensitive test. You can certainly have minor lymph node involvement that doesn't show up on a CT scan, so I'll never know for sure.
I understand what you mean about MRD. I think that there is another word that Is should have used that is more appropriate, something like "Minimum Disseminated Disease" MDD for the sensitive testing done at diagnosis to see how far the disease has progressed. The same testing done after some treatment is called MRD, to look for disease that is "residual" after the treatment. They use the same techniques for both and I've seen the terms used almost interchangably in the literature. The COG study kids get the MDD done at diagnosis. I suspect that the data is collected so they can do retrospective analysis at some point.
My 6 y/o son was dx'd Oct '10 with Pre-T Acute Lymphoblastic Leukemia. He presented with swollen lymphnodes in his neck and then one in his armpit. He also had a huge mediastinal mass which caused wheezing and shortness of breath. When they put the chest tube in and drained off a liter of fluid they were able to give a preliminary diagnosis of pre-T. It was not until a few days later that they did the BM and LP they classified it as the leukemia (68% blasts in the BM) he also had a fairly normal CBC at diagnosis but was CNS positive (1 blast in the entire CSF sample). He is on a slightly modified 0434 protocol. You can read more about his dx on the My Story of his caringbridge site if you would like.
My son was dx in Dec 2008 w/T-Cell ALL (cousin to the T-Cell Acute Lympho Lymphoma). As someone else stated basically the difference is whether its made it in the blood and elevated the WBCs as ALL patients have. Aidan had a mediastinal mass that was huge. The shadow that showed on the Xrax was enormous. His neck lymph nodes were huge as well (one was almost baseball size), he also had enlarged adenoids and tonsils at time of dx. The couldn't put in any central lines in chest/arms due to the swelling of the mass, recovery from his biopsy and tubes that he had put in in his ears at the same time.
It took them a long time to figure out what he had because when his neck nodes started to swell, he was first given antibiotics. Then when that wasn't helping they did a CBC and all was within normal range. It wasn't until the day before his biopsy that he even started acting sick. He had a hard time breathing and his stomach hurt (enlarged pancreas and spleen we later discovered). It was very noisy and I knew his tonsils and adenoids were starting to swell too. They really thought it was some nasty virus at first because nothing else was showing up. He was checked for Mono, CMV, TB but all checked out negative. Then after not coming out of the anthesia properly they did a CBC and noticed things not right and later got dx and we discovered everything that wasn't right in his little body. He was initally negative for CNS involvement but they found a couple of WBCs on the cytospin. His WBC count was in the 300Ks (don't know # of blasts but it was high) and he was rushed to the PICU at Children's Hospital where he was dx w/Tcell ALL (initially they weren't sure if it was lymphoma or leukemia (and exactly what type but considering the mass in his chest and high counts I'm pretty sure they had a good idea before the results even came back) but treatment was basically the same) He spent about a week there and he immediately went into remission and didn't have any blasts in his BM at day 14 or so. He had some cranial radiation due to his having an intermediate risk but is now in his last year of LTM. I like to think of it as 3 more cycles So far there haven't been any long term effects (hoping it stays this way). His counts have been so stable that they've just started adjusting his meds a bit to get his ANC a little lower but they aren't concerned w/it too much. Kids grow and meds need to be adjusted so now they are just trying to find the right mix w/o crashing his counts too low. They are doing it pretty slowly.
Good luck to your child. I know its hard to find others out there w/the Tcell lymphoma dx but I am pretty sure treatment is fairly similar to Tcell ALL.
My son Has T-Cell Lymphoblastic Lymphoma, he too had a large mass in his chest that went misdiagnosed for months. We were fortunate enough to have caught it before his windpipe collapsed, but it was close. We caught his cancer due to a lump that showed up in his neck, we went back and forth with the pediatrician for weeks and finally they sent us to a surgeon who removed it and discovered it was cancer. I still remember April 22, 2010 sitting in the Oncologist's office hearing her say that my child has cancer, something I would never have thought I would ever hear. We went for tests on April 23 (CT scan) and a April 24th we did a PET scan, went to dinner and by the time we got home we had a message from our doctor telling us that we had to check into the hospital immediately that he had a large mass in his chest 9cm (I think, basically the size of his fist and same size as his heart) that was leaning on his windpipe and his heart. We started chemo that night. It has been a year now, my son is in remission and doing well. There were some really scary times, but he pulled thorough and is slowly returning to his normal self. Please let me know if you have any questions about anything! Best wishes and we will keep you in our prayers.
TLBL misdiagnosed with my son as well. He also had a small bluish lump under his skin (about the size of agrain of rice). It was on the back of his neck, to the right of his spine. What was the lump on your son's neck like? Our Dr's say that his lump is unrelated- a clogged pore or benign cyst. It still concerns me.
I had this idea that if I had paid VERY close attention to my son, perhaps I could have caught it earlier. I told our oncologist that 1 month before he was diagnosed, my son said "My heart hurts" . At the time, he had just eaten a HUGE meal, so I figured it was heartburn, gave him some TUms and told him not to eat so much next time! Oh, I told the doctor, if only I had listened to him! The oncologists said, you know, it probably was heartburn....this disease has a VERY rapid onset and it is unlikely that you could have caught it much earlier. Well, that made me feel a tiny bit better.
The side effects that come to mind are significant nausea to the point of hospitalization for dehydration (especially during IM!), fatigue and vincristine related walking problems. Of course, he lost almost all of his hair (he was never cueball bald), his eyelashes and his eyebrows. He also becomes diabetic when he is on steroids, so that we have to do frequent monitoring and I give him injections of 2 kinds of insultin up to 5 times a day.He is on a chemo hold in LTM right now because his platelets are just under 50K and his ANC is 200.
Not sure what lump you mean - perhaps that was another kid? I think Balkan's son had a lump in his neck area. My son didn't have any obviously swollen lymph nodes.
TLBLmom, I can not believe it! My son also complained of "pain when I breath in, right here on my heart"!! I also gave him some antacids and brought him to the Dr. This was about 3-4 months before he was diagnosed.
Late April- Chest pain and tiny lump on the back of his neck. Dr. @ clinic on Ft. Bragg says, "It is probably clogged pore. We just don't see skin cancer in kids this young." Dr. ordered chest x-ray, which was clear.
July 3- Louder breathing at dinner, I gave him Musinex
July 6- No improvement with Musinex. Dr. gave us an inhaler and chest x-ray. Also my son was blowing less than 40% on test for athsma. Tech said probably upper airway, NOT athsma.
July 13- Breathing so loud while sleeping that it could be heard in next room. Chest pulling in on inhale. Brought to ER. Son said he felt fine and no symptoms when awake. Dr. said "We can not do anything. It stops when you wake him up, so just wake him up. I can't give you a cancer diagnosis in the ER!" ***this was almost 1 month BEFORE he was diagnosed***
July 14- Chest x-ray showed few small shadows, attributed to "athsma", given steroids. (he would improve slightly on steroids, then get worse as soon as he was off them)
July 15-August 4 - Dr's seem to think I am just nuts. Sent to ENT from camera down nose- clear to vocal chords. Given rounds of steroids, antibiotics, antihisamine, inhaler... nothing makes it go away. Dr. wants to do sleep study "sometime soon". Given pediatric pulmonology appoinment for AUG 30!
I begged for sooner appt. Got one for August 4th.in Chapel Hill.
August 4- Admitted THAT DAY at Chapel Hill. X-rays, TB test, MRI, CT, and talk of possible NHL diagnosis.
I was diagnosed with T-cell Lymphoblastic Lymphoma when i was 15... i had just finished freshman year in high school. I have a history of asthma so when I started to be short of breath from walking up stairs, we just assumed it was that... then when i breathed in it felt like a sharp pain in my left lung... right by my heart.... I also had a slight cough, and a low grade fever of 99.8 for a month before it was diagnosed. . I was treated for bronchitis and it seemed to be better, but then we got a call from the guy who took an x-ray of my chest (to see if my cough and trouble breathing was pneumonia) and he said my aorta was kinked and i should get a CT scan done. that resulted in my cancer being found... i am now 19 and I have been off of chemo since January 2, 2011. but what gets me is we think we KNOW the cause of my cancer. I was pre-diagnosed with an anxiety disorder when i was around eight or nine so one night when i found a rather large ant crawling around under the covers of my bed in my room i flipped. this was almost exactly 6 weeks before i was diagnosed. i found the RAID ant and roach spray under the sink and went to town in my room. i sprayed the walls, the floor, my bed, everything. i didn't notice the "warning: toxic, may cause some lymphomas" in small print on the back. i slept in that room every night after and up until i was diagnosed. the doctor said my cancer was just about 6 weeks old at stage III. I kinda wanted to sue but there was a warning right there, and i had other things (like beating cancer) to worry about.
What I have seen ALL children have MRD on day 8 and 29 which becomes a prognostic factor.....For TLBL there is only one study I came across.... http://jco.ascopubs.org/content/27/21/3533.full
1) Are TLBL children getting done this MRD.....Is this feasable with TLBL kids..where bone marrow is not involved.....what sample is required...where it happens ....and what is the cost invoved...Pl find out what ever u can on this....
2)Does your protocol has cranial radition 12gy....Are you getting this done....
Pl do inform what you oncs say on above 2 issues...
For us the symptoms were only back ache.....that too not severe.....
CT and next day PET gave us this data....... an mediastnal mass 10cm ...bone marrow is clean on dx 11jan 2011...pelural fluid also had maligant cells on presentation.....also cervical had a small 1cm lymph node.........
Now this node was on the left side of neck and not visible externally........After PET revealed the node on neck for 1-2 days on close observation we could say it is a swollen Lymph......That also went away before I could notice it after becoming aware.....
All going fine only relapse is a topic which I am unable to find how frequently/why this happens.........
Was reading these details to find LBL delayed response
Wow - you two are naturals in front of the camera! I cried when I saw it. I am so impressed that you held it together in front of a camera to tell your difficult story. We aren't at St Judes, but I can see that it's such a good cause. I know I would make the WORST spokesperson ever because you'd only hear me blubbering.
My son was diagnosed with T-cell lymphoblastic lymphoma at 2.5 years old in November 2011. He also presented with a large mass the size of a nerf football compressing his lung. Looking back, I feel like he displayed symptoms months before diagnosis, but our oncologist said it is such a fast growing cancer that it was most likely there less than a month.
I haven't met any other parents of children with this cancer... Everyone has ALL.
Just got on this LLS discussion board tonight for first time and not really sure how they work, but I am "Excited" to see a few others with his cancer.
How is Emma doing?