Questions I asked about NK/T-cell Lymphoma

1. Do we have the current EBV PCR results that were taken on Friday 2.12.16 please?

2. On 8 Sept. We were advised that Ryan didn't have lymphoma, but EBV lymphoproliferative disorder instead. As a result he was then given the first dose (of a planned 4) of Rituximab on Friday 9 Sept. When we came to have our second course on Friday 16 Sept, we were then informed it was not EBV LPD and we had no more Rituximab. Who decided it was LPD, then who decided it was not? How can we be certain it is NK/T cell?

3. Dr J introduced himself to us on 16 Sept and discussed in depth DNA profiling to look at possible autoimmune disorders and took a selection of bloods for testing. Are there any preliminary findings yet please?

4. Ryan's lymphocytes are around 0.5 and have dropped as low as 0.2. Is it the the B, T or NK cells that are low? Or all 3. Is it chicken or egg of being low because of the EBV virus or were they low before which allowed the EBV to proliferate which would tie in with a potential immune disorder? I have read low lymphocytes are often due to malnutrition. Ryan has never had a great diet so did we cause the lymphoma by allowing Ryan to become malnourished while he had Glandular Fever and struggled more and with his eating?

5. I have concerns surrounding Ryan's inability to swallow post Radiotherapy. I feel he may have developed psychological fears. He has met with the hypnotherapy team twice and I believe he may be referred to Speech Therapy team too. Am I being neurotic and need to give him more time? I just fear the longer we leave it the harder it may become for him.

6. Ryan lost his hair very suddenly in one go on the morning of Tuesday 20 December. He was also very sick that day and vomited for 6 days. Carmarthen were very reluctant to prescribe me any further Ondansetron. I had quite a battle to get more. Would the two incidents be connected?

7. He has also experienced extreme fatigue since the 20th and has had a very low body temperature. It hasn't gone above 36C. I even tried a new thermometer. In the mornings he averages 34C and it sometimes rises to 36C in the evenings but is usually around 35C. I presume this is simply a side effect of chemo?

8. I have read a research paper see link attached. I emailed the team but have received no reply. I appreciate the research is based on B cells, not T, but that was the basis of my email to them as we try to understand how the EBV causes T cell mutations. Have you read this? Can you possibly help me to understand the extract a little more please?https://elifesciences.org/content/5/e18270

9. Over all how do you feel Ryan's first Chemo cycle has gone? Are you happy with progress?

Thank you for indulging me.

Sarah

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