October 2024

27 October 2024

21 October 2024

Per italiano clicca qui.

Back to Macmillan Supportive Care this morning for my weekly blood test.

The results are not good, and I have emailed my consultant to ask his opinion. Neutrophils, haemoglobin, and platelets have all gone down simutaneously. The only other time this happened, back in January this year, it indicated a relapse.

Latest blood count graphs

A doctor has just examined me in Supportive Care and has confirmed informally that this triple drop in blood counts is not necessarily an issue. He has ordered a battery of tests so I am satisfied that things are under control.

The week just prior to the DLI infusion on 10 October was particularly exhausting, including an out-of-town trip in an endeavour to push forward my father's affairs, following his recent passing. There's no doubt that the stress of this trip contributed to this setback.

The good news is that I feel better today than I have in the last 10 days, much more like my normal self. I am looking forward to my translation exam on 6 November, and am doing regular practice to keep in form.

On the way to Macmillan this morning, Gloria and I were discussing the nature of Hoshanot, a prayer requesting God's salvation that is unique to these days of Sukkot and Shemini Atzeret. Each day we circle the Torah scrolls with the Arba Minim in hand, chanting cries of Save Us and juxtaposing these cries with brief phrases in alphabetical order, from Aleph, the first letter of the Hebrew alphabet, to Taf (the final letter). Each day's phrases focusses on a unique aspect of God, the Jewish people or its leaders, the Temple in Jerusalem, or so other more specific aspect of the festival. I have yet to read a full explanation of the Hoshanot prayers, so perhaps I will write one myself. Stay tuned!

21 ottobre 2024

Di ritorno a Macmillan Supportive Care stamattina per il test di sangue settimanale.

I risultati non sono buoni e ho scritto un'e-mail al mio consulente per chiedere il suo parere. Neutrofili, emoglobina e piastrine sono tutti scesi simultaneamente. L'unica altra volta che è successo, a gennaio di quest'anno, indicava una ricaduta.

Per gli ultimi grafici, clicca qui.

Un medico mi ha appena visitato in Supportive Caree e ha confermato informalmente che questo triplo calo delle conte ematiche non è necessariamente un problema. Ha ordinato una serie di test, quindi sono soddisfatto che le cose siano sotto controllo.

La settimana appena prima dell'infusione di DLI del 10 ottobre è stata particolarmente stancante, incluso un viaggio fuori città nel tentativo di portare avanti gli affari di mio padre, dopo la sua recente scomparsa. Non c'è dubbio che lo stress di questo viaggio abbia contribuito a questa caduta di valori.

La buona notizia è che oggi mi sento meglio di quanto non mi sentissi negli ultimi 10 giorni, molto più simile al mio solito. Non vedo l'ora di sostenere l'esame di traduzione il 6 novembre e sto facendo regolarmente pratica per mantenere in forma la capacità di tradurre.

Questa mattina, mentre andavamo a Macmillan, Gloria e io stavamo discutendo della natura di Hoshanot, una preghiera che chiede la salvezza di Dio, unica in questi giorni di Sukkot e Shemini Atzeret. Ogni giorno giriamo intorno ai rotoli della Torah con l'Arba Minim in mano, cantando grida di Salvaci e accostando queste grida a brevi frasi in ordine alfabetico, da Aleph, la prima lettera dell'alfabeto ebraico, a Taf (l'ultima lettera). Le frasi di ogni giorno si concentrano su un aspetto unico di Dio, il popolo ebraico o i suoi leader, il Tempio di Gerusalemme o qualche altro aspetto più specifico della festa. Devo ancora leggere una spiegazione completa delle preghiere di Hoshanot, quindi forse ne scriverò una io stesso. Restate sintonizzati!

20 October 2024

Italiano - clicca qui 

Since I had the first DLI dose on 10 October, I have had in rough order: sore throat, cough, temperature of up to 37.8, and cold symptoms. There is a point in my throat that keeps getting sore and causing coughing fits that wake me up from sleep. Temperature this morning is 37.2 along with mild sore throat and cough symptoms. I suspect that I have a throat infection, and will need an antibiotic to fully get rid of it. I have reached out to the CNSs at the hospital to see if it is possible to have an appointment with a registrar rather than having to go through A&E.

Of course none of this has played nicely with Sukkot. Rivky constructed a gorgeous Sukkah, which we have decorated and filled with hostage posters, but unfortunately I have not been able to sit in it. Gloria and I have had to say no to a number of invitations from friends to join them for Yom Tov meals.

20 ottobre 2024

Da quando ho ricevuto la prima dose di DLI il 10 ottobre, ho avuto i seguenti sintomi: mal di gola, tosse, temperatura fino a 37,8 e sintomi di raffreddore. C'è un punto nella mia gola che continua a dolermi e a causare attacchi di tosse che mi svegliano dal sonno. Stamattina la temperatura è 37,2 con un leggero mal di gola e sintomi di tosse. Sospetto di avere un'infezione alla gola e avrò bisogno di un antibiotico per liberarmene completamente. Ho contattato i CNS (infermieri senior) dell'ospedale per vedere se è possibile avere un appuntamento con un dottore senza dover passare dal pronto soccorso.

Naturalmente niente di tutto questo ha funzionato bene con Sukkot. Rivky ha costruito una splendida Sukkah (capanna della festa), che abbiamo decorato e riempito di poster di ostaggi, ma sfortunatamente non sono riuscita a sedermi e mangiare lì, com'è tradizione della festa. Gloria e io abbiamo dovuto dire di no a diversi inviti di amici per unirci a loro per i pasti di Yom Tov (la festa).

14 October 2024

Graft versus Host Disease (GvHD) has kicked in again today in a big way. Without exploring this delicate subject too intensely, I have had to spend a fair amount of time in the bathroom today, including  a particularly close call while driving home on the North Circular; I am grateful that we were able to navigate through the situation in a timely manner.

It's clear that there is a force inside of the body that is driving this, as I have seldom felt such urgency. This experience sheds light on the intricate dynamics at play within the body when faced with such medical complexities. It serves as a stark reminder of the resilience and vulnerability that coexist within us, highlighting the profound ways in which our internal mechanisms can dictate our daily lives.

Despite the challenges of GvHD, there is no doubt that its presence indicates a positive response to the DLI treatment. But what is the nature of that response? One of the subjects of discussion for our meeting with Panos in two weeks' time, is how the effect of DLI is to be monitored. How can we tell if it is making an impact? Will I need more bone marrow biopsies, to check if the lymphocytes are killing off more leukaemia cells?

How is DLI monitored?

In order to endeavour to find out more about mopnitoring the impact of DLI (and at the same tiome, to give myself a headache) I entered this search string into Google.

monitoring the impact of donor lymphocyte infusion

Here's how the AI overview responded.

The impact of donor lymphocyte infusion (DLI) therapy is monitored by evaluating the following: 

Molecular response 

Molecular monitoring can differentiate between molecular and hematological relapse, which can lead to better outcomes. 

Donor chimerism 

Donor chimerism correlates with molecular response after DLI. 

My comments: After reviewing a number of scholarly articles and comparing to experience following stem cell transplant last year, my understanding is that molecular modelling is used after a stem cell transplant to determine what percentage of the bone marrow is from the donor. This method is implemented using a donor chimerism test. I had this test towards the end of 2023, as part of my post-transplant monitoring, and the results were 99% donor cells. So these monitoring methods are used following the stem cell transplant itself and are meant to identify the probability of relapse, and determine if there is a need for DLI. They do not measure the success of the DLI. So much for AI!

Measurable residual disease (MRD) 

MRD is a measure of very low levels of disease. MRD and remission status at the time of DLI are prognostic for the outcome.

My comments: This matches what Panos has said in various consultations. One of the prerequisites for DLI is a good state of remission, which I have achieved according to the most recent bone marrow biopsy. However, this is a prerequisite for DLI, not a measurement of its success.

Graft versus host disease (GvHD) 

GvHD is a common side effect of DLI. Patients should be evaluated for GvHD after each DLI. 

My comments: Well we know GvHD is a side effect. Multiple doctors have also told me that GvHD, in manageable amounts, if a good indicator that the body is responding positively.

I then tried a slightly different search string.

monitoring the success of donor lymphocyte infusion

The success of donor lymphocyte infusion (DLI) therapy is monitored by evaluating the following: 

Chimerism 

The percentage of bone marrow that comes from the donor. After a stem cell transplant, chimerism is monitored regularly. It should be as close to 100% donor as possible. A drop in chimerism could indicate a risk of relapse or graft failure. 

Measurable residual disease (MRD) 

A biomarker of response to DLI treatment. MRD status before DLI treatment can predict event-free survival and overall survival. MRD status 90 days after DLI treatment can predict relapse-free survival and the cumulative incidence of relapse. 

Disease response 

Patients with DLI-responsive relapse typically respond within 2-3 months. 

GvHD 

Patients should be evaluated for GvHD after each DLI. DLI therapy is associated with an increased risk of GvHD. 

My comments: Now we're getting somewhere! MRD is defined here as a measure that can be taken around 90 days after DLI treatment and that can predict relapse-free survival. I'm still uncertain how we measure MRD. Is it just a case of performing another bone marrow biopsy. Is there any experimentation by performing some kind of simulation at the molecular level using my bone marrow samples to see if any genetic mutations are identified, as I recall one registrar saying? As we say in Italy, chi sa? (who knows?)

A bit of light relief – the latest blood counts

The blood count for lymphocytes has hardly changed at all, since last week. Today (Monday 14 October) it is 0.36, as opposed to 0.35 one week ago. Recall that the first dose of DLI was administered last Thursday 10 October.

Haemoglobin is now going up on its own, without any need for infusions. This is borne out by the latest graph. The last red blood transfusion was 23 September, and while the haemoglobin value did go down after that transfusion in early October, it has risen in the past week all on its own!

Platelet counts are also now increasing, although at a slower rate than haemoglobin. The last platelet transfusion was 30 September, and the graph shows that since then there has been modest but regular increase.

I decided to save the best for last. Neutrophil counts, after weeks of weak linear increase, are now showing first indications of an exponential increase. In the last week they have gone up 0.5, as opposed to the 0.15 increase of the previous week. If this continues next week then we will be in the green area for the first time in months.

13 October 2024

Italiano - clicca qui

A lot of things have happened in the last few days. Ongoing treatment has included the much awaited Donor Lymphocyte Infusion (DLI) , as well as the annual milestone of Yom Kippur. The juxtaposition of these two events was not ideal; on Friday, the day following the DLI there was diarrhoea, a key indication of Graft versus Host Disease, indicating that the DLI was generating a response within the body. Along with this came an intense sore throat on Friday morning , and this is still persisting now on Sunday evening. The overall effect was a sense of vulnerability going into Yom Kippur, possibly not a bad thing as Yom Kippur and the overall process of teshuvah requires a sense of our weaknesss and limitations. On the day of Yom Kippur itself I was able to spend three hours in Shul and enter somewhat into the spirit of the teshuvah process, a major improvement on last year when I was unable to make it to Shul at all.

My main focus at the moment is another translation exam in early November. I am practising daily by translating complext texts from Italian to English, as well as reading texts on translation theory. The text I am currently translating, from Internazionale magazine, focusses on the role of the school system in developing mature thinking citizens. It is prompted in part by a crisis of values whereby children of immigrants are currently being educated in Italian schools, but these children are not Italian citizens and have no immediate prospects of gaining Italian citizenship. The piece presents the writings of great Italian luminaries of the past such as the jurist and politician Piero Calamandrei and the maverick priest and pioneering educator Don Lorenzo Milani, who was halakhically Jewish and who I would like to believe derived his belief in giving poor and despised children the linguistic and educational tools to succeed in society from his Jewish background. As Rambam says, the greatest form of tzedakah (support for another person, whether monetary or material in some other way) is to teach a person how to fish. The piece attempts to apply the thinking of these great men who lived in very different times to the educational challenges of today.

13 ottobre 2024

Sono successe molte cose negli ultimi giorni. Il trattamento in corso ha incluso la tanto attesa infusione di linfociti del donatore (DLI), così come la pietra miliare annuale dello Yom Kippur. La giustapposizione di questi due eventi non è stata l'ideale; venerdì, il giorno successivo alla DLI, c'è stata diarrea, un'indicazione chiave della malattia del trapianto contro l'ospite, che indicava che la DLI stava generando una risposta all'interno del corpo. Insieme a questo è arrivato un forte mal di gola venerdì mattina, e questo persiste ancora adesso domenica sera. L'effetto generale è stato un senso di vulnerabilità in vista dello Yom Kippur, forse non una cosa negativa poiché lo Yom Kippur e il processo generale della teshuvah (riavvicinarsi a D-o) richiedono un senso delle nostre debolezze e limitazioni. Il giorno stesso dello Yom Kippur sono riuscito a trascorrere tre ore in sinagoga ed a entrare un po' nello spirito del processo di teshuvah, un grande miglioramento rispetto all'anno scorso, quando non sono riuscito ad andare in sinagoga.

Al momento il mio obiettivo principale è un altro esame di traduzione all'inizio di novembre. Mi sto esercitando ogni giorno traducendo testi complessi dall'Italiano in Inglese, oltre a leggere testi sulla teoria della traduzione. Il testo che sto traducendo al momento, dalla rivista Internazionale, si concentra sul ruolo del sistema scolastico nello sviluppo di cittadini maturi e pensanti. È in parte sollecitato da una crisi di valori per cui i figli degli immigrati vengono attualmente educati nelle scuole italiane, ma questi bambini non sono cittadini italiani e non hanno prospettive immediate di ottenere la cittadinanza italiana. L'articolo presenta gli scritti di grandi luminari italiani come il giurista e politico Piero Calamandrei e il prete anticonformista e pioniere dell'educazione Don Lorenzo Milani, che era ebreo halakhico e che mi piacerebbe credere derivasse la sua convinzione dal dare ai bambini poveri e disprezzati gli strumenti linguistici ed educativi per avere successo nella società dalle sue origine ebraiche. Come dice Rambam (Maimonide), la più grande tzedakah (sostegno per un'altra persona, sia monetario che materiale in qualche altro modo) è insegnare a qualcuno a pescare. Il testo tenta di applicare il pensiero di questi grandi uomini vissuti in tempi molto diversi alle sfide educative odierne