Avant de revenir sur ces dernières semaines, peut-être, qu’une petite idée sur la façon dont je me sens serait utile. L’expression que j’utilise le plus souvent est que je suis encore fonctionnel. Ma mobilité et mon équilibre sont réduits mais je n’ai pas besoin d’aide en particulier. J’ai un peu de peine avec ma mémoire à court terme et j’ai plus de peine à trouver mes mots. Il m’arrive souvent que je démarre quelque chose et qu’avant que ce soit fini ou rangé, je fais quelque chose d’autre. Mon cerveau est plus lent et je dois me concentrer pour faire quelque chose même aussi simple qu’un latté. Je n’ai toujours pas de nausée et pas de douleur. Très peu à la tête. Cela n’a pas été toujours le cas. J’ai repris des stéroids (Dexa – Dexamethasone) le 30 décembre 2021. J’avais arrêter d’en prendre car mon nouvelle Oncologue (une femme de moins de 40 ans de retour au Canada après quelques années passées au Texas et qui n’a pas encore perdu + de 130 patients avec le Glioblastome, sera certainement moins cynique) voulais savoir comment je me sentais sans déxa (et pour éviter les effets secondaires).
Before looking back on the last few weeks, maybe a little insight into how I feel would be helpful. The expression I use most often is that I am still functional. My mobility and balance are reduced but I don’t need any particular help. I have a little difficulty with my short-term memory and I have more difficulty finding my words. A common occurrence is that I start something and before it is finished or put away, I do something else. My brain is slower and has to concentrate to make something even as simple as a latte. I still have no nausea and no pain. Very few headaches. This has not always been the case. I resumed taking steroids (Dexa – Dexamethasone) on December 30, 2021. I had stopped taking them because my new Oncologist (a woman under 40, who has not yet lost 130+ patients to Glioblastoma and is a little less cynical, back in Canada after a few years in Texas) wanted know how I felt without it (with the hope of avoiding its side effects).
Ça a durer 8 semaines, un mal de tête intense est revenue dans la nuit qui ne partait pas avec tous les anti-douleurs permis. J’arrivais à peine à me retourner dans mon lit, encore moins à sortir du lit. Kathy a pensé à me donner de la déxa. C’est un anti-inflammatoire qui m’a aidé à de nombreuses reprises. Notamment après ma craniotomy. Apres quelques heures, les douleurs de tête étaient fini et j’avais retrouvé de la mobilité. Déxa est un médicament miracle pour moi. Aprés quelques jours, j’avais retrouvé mes sensations de plusieurs semaines auparavant. Au cas ou vous ayez suivi les nouvelles avec la Covid ces 2 dernières années, vous n’aurez pas échappé que la Déxa est le seul medicament ayant probablement sauvé des vies en soins intensifs. Il a pu empêcher au système immunitaire d’attaquer les poumons. On aura les anti-viraux de Pfizer et de Merck en 2022 bien plus cher et plus efficaces? Que les Européens et les Nord Américains vont s’approprier dans les mois à venir.
Pour en revenir sur mes traitements, Bevacizumab (Avastin) ne m’a pas rendu tous les l’effets escomptés. Il a peut être retardé la croissance de la tumeur coté droit dernière la tête (occipital lobe- tumeur originale). Mais il n’a pu empêcher la croissance de deux tumeurs droit et gauche dans le lobe frontal. En plus des injections toutes les 2 semaines d’Avastin, j’ai pris une autre chimio (Lomustine) qui n’a aussi pas été efficace. Je prends une autre chimio depuis 4 jours (Etoposide) qui je crois est la seul chimio pour le glioblastoma approuvé au Canada que je n’ai pas encore essayé. Toujours peu d’effets secondaires. Mais je préférerais une chimio qui me rendent un peu malade mais qui ralentie la croissance des tumeurs. Je compte sur Etoposide en combination avec Avastin. Sinon, ça va être dur, la tumeur originale est revenue en doublant toutes les 4-6 semaines. Une croissance exponentielle. Je reste encore déterminé. Je n’ai pas le choix d’espérer car c’est la seule façon de se battre. J’ai des objectifs, comme être là pour les 15 ans de Brianne en avril. Et la remise des diplômes de 12 ième année pour Benjamin en juin avant son entrée à l’université en septembre.
After 8 weeks without dexa, intense headaches reappeared at night that did not go away with all the painkillers allowed. I could barely turn over in bed, let alone get out of bed. Kathy thought about giving me some dexa. It is an anti-inflammatory that has helped me many times. Especially after my craniotomy. After a few hours, the headaches were over and I had regained mobility. Dexa is a miracle drug for me. After a few days, I had regained sensations that I had lost several weeks before. In case you have been following the news with Covid for the past 2 years, you may have learned that Dexa is the only drug that has probably saved lives in intensive care. It was able to prevent the immune system from attacking the lungs. Will the anti-viral meds from Pfizer and Merck in 2022 be much more expensive and more effective? Meds that Europeans and North Americans will hoard in the near future.
Going back to my treatments, Bevacizumab (Avastin) was not as effective as I had hoped. It may have delayed the growth of the tumor on the right side of the head (occipital lobe- original tumor). But it could not prevent the growth of two tumors in my right and left in the frontal lobes. In addition to injections every 2 weeks of Avastin, I took another chemo drug – Lomustine, which also was not effective. I started a new chemo drug (Etoposide) 3 days ago, which I believe is the only chemo for glioblastoma approved in Canada that I have not tried yet. Still few side effects. But I would prefer chemo which makes me a little sick but slows tumor growth. I’m counting on Etoposide in combination with Avastin to do just that. If not, it’s going to be hard, as the original tumor was doubling in size every 4-6 weeks when it reappeared last summer. Exponential growth. But I still remain determined. I have no choice but to hope because it’s the only way to fight. I have goals, like being here for Brianne’s 15th birthday in April and Ben’s graduation ceremony in June before he starts university in September.
It lasted 8 weeks intense headache in the night that did not go away with all the painkillers allowed. I could barely turn over in bed, let alone get out of bed. Kathy thought about giving me some dexa. It is an anti-inflammatory that has helped me many times. Especially after my craniotomy. After a few hours, the headaches were over and I had regained mobility. Dexa is a miracle drug for me. After a few days, I had regained my feelings of several weeks before. In case you have been following the news with Covid for the past 2 years, you will not have escaped that Dexa is the only drug that has probably saved lives in intensive care. It was able to prevent the immune system from attacking the lungs. Will we have anti-virals from Pfizer and Merck in 2022 much more expensive and more effective? That Europeans and North Americans will appropriate in the near future. Going back to my treatments, Bevacizumab (Avastin) did not give me all the effects I expected. It may have delayed the growth of the tumor on the right side last the head (occipital lobe- original tumor. But could not prevent the growth of two tumors right and left in the frontal lobe. In addition to injections every 2 weeks of 'Avastin, I took another chemo Lomustine which also was not effective I have been on another chemo for 3 days (Etoposide) which I believe is the only chemo for glioblastoma approved in Canada that I have not tried yet Still few side effects. But I would prefer chemo which makes me a little sick but slows tumor growth. I'm counting on Etoposide in combination with Avastin. Otherwise it's going to be hard, the original tumor came back doubling every 4-6 weeks. Exponential growth. I still remain determined. I have no choice but o hope because it's the only way to fight. I have goals, like being here for 15 years de Brianne in April And the graduation ceremony for the 12th year for Benjamin in June before he starts college in September.
Les familles de mes frères et soeurs en visite à North Vancouver – Octobre 2021
Seb's journey 