Parents of a child with NHL

Hi Sandra P and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your son.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Anaplastic large cell lymphoma (ALCL) but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Especially as I have also been through 2 Allograft (donor) Stem Cell Transplants……. (June 2014 then Oct 2015) but I am now 9 years 8 months out from my last treatment and doing great.

Lets see if there are any parents in the same position on the group

Are you in the UK Sandra?

Thank you Mike. For your very positive reply. Yes I’m in UK. In london actually. 

Yes my journey has been 25+ years long and complicated due to having 2 rare types T-Cell NHL (See my story) but like many Lymphoma journeys there are many many positive stories.

As you are in the UK you can widen your support base by checking out Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…….. there are over 5500 members in their online support group with a good number of parents who have supported youngsters through their Lymphoma journeys 

They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Sandra, I am very sorry to hear of this. T-Cell Lymphomas are well known for relapsing. It sounds as though his sub-type was known as "ALK negative" or "ALK-"  There is also an ALK+ type, but that is normally placed into long-term or lifetime remission by the classic CHOP lymphoma regimen. ALK- is more of a challenge. I had two similar T-Cell Lymphomas and both relapsed. However, there has been no trace of either since I underwent a related donor transplant in 2015. 

However, in recent years, much progress has been made in treating the T-Cell Lymphomas. Since your son is young, he is blessed with the resilience needed to undergo potentially aggressive therapy. I know that words may provide little comfort, but in my 60s, I had two simultaneous T-Cell Lymphomas at stage IV as well as a myeloid cancer (MDS) which constituted 23% of my marrow.

And here I am, not a trace of any of them, 17 years after all of this began.   

hi PO18guy. 

thank you so much for your positive message. To confirm my son does have the Alk+ve variant so must be incredibly unlucky.  I really appreciate your reply snd positive story. May i ask how strm cell transplants you have had?    We are hoping my daughter will be a suitable donor so just waiting on test results for that one. He needs a bit of luck so we’ll keep hoping. 

i don’t fully understand the GVHD yet. All this is quite new and there’s only so much we can absorb at a time  its a tough and lonely journey so we’re just taking 1 day as it comes  

thx so much for reaching out  

Hi again Sandra Sandra P ...... have you had time to check out the various Lymphoma Action Support Platforms… there is lots of people there to help out.

You are very welcome. Even if unlucky, the newer regimens should be well able to knock it back down. As well, the transplant's "graft-versus-lymphoma" effect should keep it away, as his marrow will most likely be completely replaced as it engrafts. The T-lymphocytes which became mutated originated in his marrow, so replacing that marrow reduces the likelihood that he will have to deal with this again.  

I underwent a 5/10 match, or "haploidentical" transplant, using my son as donor. I had no siblings and there were no acceptable unrelated donors found either in the national or world donor registries. If she is found suitable his sister would be the preferred donor. However, an unrelated donor is also a possibility as is a (umbilical) cord blood transplant, if that is an option. 

As an aside, cord blood transplants seem to produce less Graft-versus-Host Disease (GvHD), which is a definite plus. We have struggled to control my GvHD but it is manageable at this point. The 5/10 match which I received carries many risks, but was my only option at the time.

Again, your son's age is a tremendous benefit to overcoming this cruel disease.  

As to GvHD, it is a type of transplant rejection issue, albeit a reverse of solid organ  rejection issues. With solid organ transplants, one's own immune system may reject the tissue of the transplanted kidney. Our immune systems operate on a binary, friend/foe basis. Cells that are natural to our bodies are friends being native to us and recognized by our immune systems.

Other cells, whether human, or pathogens such as bacteria and viruses, are considered enemies, as they are not recognized as native to the body. Thus, when a kidney is transplanted, the body's immune system may attack it, considering it to be alien to the body - in essence, a danger. Thus, the transplanted kidney may eventually be destroyed by the host's immune system.

Even though it is a human kidney, the DNA in the transplanted kidney is sufficiently different that the immune system may be triggered to attack it. Reverse this process  if one's marrow is transplanted. The marrow is the source of our immune system and once it has engrafted in a new body, it may see the host's body as foreign and begin to attack. Where, when and to what degree remain to be seen.

The entire matter can seem almost overwhelming and complicated, but controlling our immune system, especially a transplanted immune system, is well established. It is a wearying time, but we are adaptable creatures and we will adjust - both mum and son.  

Thank you. That is very helpful. One day at a time.