Hi All, newbie here....Bob

Hi.  Just need to have a vent whilst sitting here crying.

2 days ago, my son received a call saying that his biopsy results were back and everything was clear.  I cant tell you the joy we had in our hearts.  But this was very short lived.  We then found out that through either miss-communication, or my son just not taking everything in, his all clear message wasnt the case.

his bloods and bone marrow ate clear, however we are still waiting results for his bones.  Because his pet scan showed shaddows and he is still in alot of pain they have told us this could still be rkitt Lymphoma.  We are now heartbroken all over again.  I cant stop crying and dont know what to do

Hi again MyBoyL and sorry to hear about your son. 

Hearing and correctly understanding what is said on a phone consultation can be confusing…. and unfortunately can lead to miss communication.

The important thing to keep at the front of your mind is that ‘this is Lymphoma!!!!!’……. if we were talking about other cancer types then we would be having a more challenging conversation.

Yes, it is disappointing that it looks like his treatment has not done the job completely …… but based on my 25 years journey his medical professionals will reassess everything and delve into their tool box and use the next available tool…… take a big breath…… and another ((hugs) 

Thank you.  You’re words are so comfortng.

I’m just so scared that the results confirm he still has Burkitt Lymphoma.

Time will tell, but just remember that if it is still there it is still very treatable ((hugs))

So sorry to hear this. However, "shadows" can be a variety of things, from scar tissue to a poor image to ??? Burkitt's is very active. It glows brightly on PET scans, based on its unusually high intake of blood glucose. A PET scan would reveal any hyper-metabolic activity and shadows or poor scans are not hyper-metabolic. One step, one day at a time.

I was gutted for a time at my first relapse. My prognosis had dropped from the original "poor" to "extremely poor." I had naively thought that it was all over and done with. Well, a clinical trial appeared and we got it into remission once again. Almost 5 years after, it relapsed yet again. There was no prognosis possible, as it was now only a matter of whether or not I survived.

What is worse than all of the relapses is that, at some point, the original lymphoma had mutated into two separate sub-types of T-Cell Lymphoma. Only one would respond to various therapies. And now that second Lymphoma had also relapsed. Stunningly, the effects of numerous cancer treatments had caused a third, myeloid cancer in my marrow. Finally, it was all three simultaneously.

Finally, 3/4 of an experimental 4-drug regimen for a completely different lymphoma eradicated both stage IV T-Cell Lymphomas in only two infusions. My haematologist, not a man of faith, called it "a miracle." I had only a trace of the myeloid cancer left.

Even after three relapses and two additional cancers, I still had options. I underwent a stem cell transplant. Today, there is also CAR-T therapy and other experimental therapies under study. 

I say "chin up" often, and it while it sounds trite, it nevertheless remains true!    

Hi, thank you for your message, and im so sorry to hear what you and others have all been through!  
Am I right in reading your 1st paragraph that although shadows could be a number of things, Burkitts would show up differently?  
We are still waiting the full results of his biopsy.  He had an MRI 2 days ago as they want to do a targeted biopsy.  We are just waiting an appointment.

Hi again MyBoyL based on my experience…… I have scar tissue  in my neck that that still shows up in scans that is not my Lymphoma…… my last scan was end of last year for another issue but they still reported the scar tissue being there…… and this is coming up to 11 years since I had treatment for that specific area.

As you see there are not many caregivers on this group but if you connect in with the  various Lymphoma Action……. Support Platforms you will connect with lots of caregivers, family and friends as well as lots of folks with Burkitts.

Burkitt's is a very rapidly growing lymphoma - but that rapid growth makes it also more vulnerable to treatment. Hyper-metabolic activity on a PET scan will show a   reddish to orange glow. The brighter the color, the more metabolic (malignant) activity exists. However, a PET scan does not diagnose cancer. It points to areas of high metabolic activity which need monitoring or further investigation.

After cancer is treated, tumours go through a process called necrosis (the cells dying) and this also will show on a PET scan, but the activity is associated with cell death rather than cell multiplication. Sadly, the radiologist who interprets the PET scan must take notice of this. Since the radiologist does not know what is causing the activity, they must mention that it is suggestive of cancer, even if it is not.

All forms of scanning detect sizes and shapes within the body. For this purpose, they are very useful. However, they cannot diagnose cancer, but often identify shapes or masses present inn the body which are suspicious for cancer. Doctor then looks further into it.

I would imagine that your son will be scanned with some frequency, to ensure that the tumors resolve or that any flare up is caught early on. While questions are in one's mind, it is good to write a list of questions to present to doctor as we so often forget to ask simple things, the answer to which which could be of comfort to us.

Hi

Not been on for a while.  Everything very upsetting.  My sons cancer is still present and has now spread to his brain.  His had another cycle of chemo and scheduled for another PET on Monday.  We are so frightened.  I cant cope with him going through all this pain, hurt and upset.  Seeing him cry to the Doctor saying he doesn’t want to die, and nothing I can do to stop his suffering.  I keep praying for a miracle.  I just want to take this away from him.  I keep asking people for advise in the hope that just one person will tell me he will be ok, and then he will be.  This heartbreak is killing me.  I dont know what to do…

Hi again MyBoyL and sorry to hear how things have developed.

Until Lymphoma is ‘fully’ under control the Lymphoma can unfortunately move to other areas of the body….. this happened to me to some degree.

Central Nervous System Lymphoma CNS Lymphoma is one of the main types of Lymphoma….. as much as this is scary there are treatments available to treat this……. the main treatment is called MATRIX.

I have talked with a good number of people over the years both patients and family members who have navigated the CNS Lymphoma journey and I have heard many very successful stories….. so there us hope.

At the moment ‘you’ need support as much as your son….. you can find good connections in the various Lymphoma Action Support Platforms

They also have a great Buddy Service where ‘you’ can be linked up with a carer or family member who has walked the same support 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.

((Hugs))