Hello! I have been silent for a long time now. It was just because nothing special was happening. Then, last week, I went to visit my “graft doctor” on a regular visit. I had previously made a blood analysis and everything looked under controle…

But, on the week before my visit, I had the feeling that something was “wrong” in my mouth. Was GvH making its come back ? (I had a previous experience at the end of last year, so I was thinking that I guessed right…). My doctor told me that yes it was chronical GvH… One way to fight GvH is to use corticoids and/or increase the Neoral. Doctors don’t like too much corticoids. So, she told me that I will have to take more Neoral (40 mg twice a day instead of 30 mg)… She also told me that we could use “a new technique” called photopheresis. It is use to fight GvH, as well as other diseases. So, last Friday morning I visited again the Saint Antoine Hospital! The nurse and the doctor explained me what was photopheresis (of course I had already done some literature search on the subject! Researcher one day researcher for ever!). It is pretty simple, and similar to cytopheresis. Using a special machine to which you are connected via needles and tubing incerted in the veins, a small amount of blood is taken out of the body; the blood is centrifugated to separate the white cells from the other components. When enough white cells have been collected, they are flushed out in a special set up. A photosensitizer is added to the cells and then UV is applied for a given time (the chromophore used is an intercalant, which enter the DNA: under UV, a photochemical reaction takes place, destroying the DNA but keeping the cells intact). At the end, the treated white cells are reinjected to the blood stream….(http://emedicine.medscape.com/article/1131176-overview). The real mechanism explaining why this can lower the GvH reaction is fare to be clear for me! Anyway, it seems to be working 80% of the time!One problem with this technique is that several photopheresis have to be done, once a week for several weeks, then not so often. To see a real effect, once the “lichen” in the mouth is gone, is not obvious since two things are changed at the same time: the increase of Neoral and the photopheresis! So, to be sure that it worked, Neoral will have to be decreased: if the mouth GvH does not come back, then we will be able to claim victory! If everything is working, I might end up with no more Neoral: it is the goal!

A last thing: on the day I went to the hospital, I received a letter from my bone marrow donnor! I was moved from deep in my heart, almost crying…. She was responding to a letter I sent her to thank her a few months ago. Although I will never know who she is, I know more about what she had been through in order to give me her precious hematopoietic stem cells: I don’t think that she will ever read this blog but anyway I want to thank her again and again and again, for giving me the chance to live!

And to visit places I never visited before, such as “les gorges du Verdon” in Provence; or to see iris in display around Bourges, in the center of France…

Enjoy life everyday!

Yesterday, I did some “cleaning” on my computer. I found a copy of the blood analysis made just one year ago. As I have one made from the hospital just two weeks ago, I started to compare the two: what a difference! It is as if it was not from the same person! Thruly enough, I am not the same person, as I have two DNAs living together in my body!

I am happy to share with you such a beautiful result, made possible by my donnor in association with the outstanding team in Saint Antoine hematalogy department!

I am still a little tired, but it is OK! It will improve with time!

I wish you all the best… and don’t forget to enjoy life!

Cheers.

Patrick

Last week I had my regular visit with my graft doctor at Saint Antoine. I was just eight months after the graft. The blood analysis is “perfect”, including the immunologic part. I am able to fight most of the “bad animals” I might face in the regular life! Next appointment is in 3 weeks.

Yesterday I had another appointment with the dermatologist in Tenon hospital. It was 3 months after I had a carcinome removed by dynamic phototherapy. It worked perfectly and the doctor was happy with the result! Next visit will be in a year from now…

Next week I will have the last 2 injections for the vaccins. I had to start the vaccins as if I was a  baby…. funny is not it?

Last weekend, we went to Sarlat in the Perigord for a few days. This area is famous for its food: foie gras, duck confit, good wines… There are also a lot of places to visit: garden castels, churches, abbayes, closters,… The weather was OK, except for the visit to Rocamadour: it was raining so hard that I had to ask Marie and Saint Antoine to make it stop, what they did!

Here are some photos taken during the trip….Enjoy!

 

I did not give much news over the last few weeks… but it is just because things are going pretty well :-)!

Last Tuesday, we had an appointment with the doctor who is following me (I call her Doctor Yes because she very often has a positive answer when we suggest some modifications in the day to day life, such as taking public transportation, …). Every thing is going well, including the GvH, which is slowly disappearing. I was disappointed as she did not lower the amount of cyclosporine I am taking each day, but I need to be patient… She asked me to stop another drug I was taking, one used to protect my liver, and to lower also the amount of magnesium I had…a lot of positive things! Good signs!

The blood analysises are close to “perfect”. I am still a little tired in the evening when I do too much things during the day, but it is not such a big deal! I need to be patient! I am only seven months after the graft and I am already in good shape…

Since I am well, I started to have vaccins, as everything was destroyed by the chemotherapy. It is as if I was a baby again, a big baby with white hair!

Next visit to Saint Antoine hospital will be in 3 weeks…

Next weekend, we will go to London for our daughter’s marriage! Pretty funny!

 

What a year! Just a year ago, we were coming back home after 3 months spent in Boulder-Colorado. A few days after coming back I had a blood analysis, 3 months after the previous one. The results were very surprising: anemia! Considering that just a few days before we were hiking at 3000 m in the Rockies, it was kind of difficult to believe… Anyway, I had the first red blood cells transfusion of my life. It is hard to understand why I had no problems walking for kilometers at “high altitude” and in the cold without any problem! This transfusion was very effective and lasted up to 3 months; I then had to have a second one, in addition with a platelets transfusion…

I had a first myelogram done early in 2016, which did not show any real change when compared with the previous ones. Then later in march/april, the new myelogram demonstrated clearly that the situation was degrading fast: I had blastes in the bone marrow, not a good sign… For the first time ever, doctors suggested that I might need an hematopoïtic stem cells transplant, and the sooner would be the better. Two of my brothers were tested for compatibility: 50%. Doctors said that it was possible to do with one of my brothers, before they looked to international donnor  data base. They found a 100% compatible donnor: what a luck for me! In order to slow down the evolution of the myelodisplasia, I had a run of Vidaza, which was very effective to block the evolution. At some point I started to think that maybe I could make with Vidaza, as I was so afraid of the transplant… Doctors and people around me convinced me that it will not last a long time before Vidaza will not be anymore effective. Then, because of the bad effects of this drug on the body, I would be in a worst situation. In june, I learned that the transplant would happen soon. I entered the hospital on June 15, had a chemotherapy for 6 days (some fever, vomiting, the usual stuff!). Being in aplasia, I had to stay in a sterile room, but Jaja and friends had the oportunity to visit me. On friday june 24, I had the transplant, which was a kind of disturbing event: it was like a red blood cells transfusion and lasted half an hour. But this event was very very important: it saved my life!

I spent 4 weeks in the sterile room, which is pretty short… On July 13th I headed  back home! Youpi!

On Christmas eve, it will be the 6th “anniversary” (in months) of my second birth! As a newborn, I will need to do again vaccines: funny is not it? I am still fare to a full recovery: I will need up to a year! It is a good class of patience! Some time the spirit is low, like when I got the news that I had a limited GvH…. see previous blog.

Anyway, I wish you all a Merry Christmas! Here is a short comptine my father used to sing us when I was a child. It is in french but there is an english version too: enjoy!

 

Greetings from Bures!

Last week, I had an apointment at Tenon hospital to have a carcinome removed by phototherapy. The dermatologist had a look to my skin and “discovered” that I had “likens” in the mouth. It was related to a “GvH” (guest versus host attack. I went two days later to the Saint Antoine hospital to have a confirmation: yes it is a weak GvH. The doctor gave me a solution to wash the mouth and increased a littl the amount of cyclosporine I took: 2 times 50 mg instead of 2 times 10 mg by day…. I expected to finish to take cyclosporine for Christmas but no!

Today I went again to the Saint Antoine day hospital for a blood analysis and a mouth checking: the “lichens” started already to disappear. Moreover, the blood analysis is now close to normal!

What a year! Last december we were climbing high in the Rockies! But I am on the right track with new hematopoietic stem cells of high quality!

This year I learned a lot, of course in hematology but above all I learned that we should never forget to enjoy life every day: it is such a precious thing!

Merry Christmas to everybody! And thank you for helping me to “survive” those difficulties!

 

Last week we went to “Le Touquet”, a small city located in the north of France, on the “Manche” sea. We spent 4 days there in an hostel located right on the beach: a room with a vue!

Jacqueline did some thalasso and we walked on the beach and the dunes, a few kilometers each time. What a difference between now and a year ago: walking at the sea level versus climbing the mountains above 2500 m! But I am happy to be able to do some walking again!

The weather was pretty OK for mid-november with some sun, almost no rain and no freezing temperatures!

Here are some photos taken near the beach…

On thursday november 10th, the lab organized a big anniversary event for the 20th anniversary of the opening of the lab: I attended this event! And I used the RER B line from home to Paris: first time in 6 months! I am closer and closer to the life as usual state!

On sunday, we had a big family reunion for my birthday: good food, wonderful family, a lot of gifts!

Everybody is monitoring the coming back of my hair: here is a photo taken by my daughter during the last week-end…

Yesterday we went back to the hospital for some analysis: blood analysis and a myelogramme…. Results this afternoon, as we have an appointment with the doctor. No problem in vue; everything is OK; I even get some weight (61 kg this morning, 125 pounds).

I am recovering faster than expected. I am still tired in the afternoon but I don’t need anymore a nape every day!

Life is beautiful! I wish you enjoy it as much as me!

Last thursday, we went to the day hospital. We had been there 10 days ago. A nurse took some blood samples, then we waited for the results: everything was almost perfect! I was just short in red blood cells but nothing alarming: the doctor explained previously that it takes time to have a “regular” red blood cells count.

The doctor told us that there was no need to come back to the day hospital. We have an appointment with the doctor on November 15th, and I will need only to have a blood analysis performed in an outside laboratory, as I did before. She said also that after this appointment, I will come to meet the doctor only ones a month at the begining, then not so often… Yes! Another very good news! The “regular” life is around the corner!

The last step will be to take the public transportation…maybe next week or the week after?

Yesterday, we had a sunny afternoon, so we went for a walk around “Bures reservoir”: 2.5 km, the longest walk I did since last June and the bone marrow transplant. After I cleaned up some dead leaves from the ground in the garden… I was not tired, so i was happy to be able to do something after such a long time of inactivity.

Enjoy life!

Top photo: with hairs!

Bottom photo: without hairs… but they are coming back!

 

 

Last monday, we had a discussion with the doctor about what we could change to ease the day to day life. We asked in particular if the time had come to be able to eat outside: yes was the answer! So yesterday night, we went for our first diner in a restorant sinnce last May! Not a fancy restaurant, just a small vietnamese place near our home! But I was so happy! For us, it opens the way to take some “vacation”for a few days!

Things are improving a lot. We just need to visit the day hospital every 10 days. The cyclosporine I take is decreasing each week; by November I will be free!

On Monday, the catheter was removed, so I am free to take a full shower now…

On the other end, during our visit to the day hospital, because we meet various patients with different “histories”, I can appreciate more how lucky I am: I am on the way to a full recovery! Very few people we meet have this chance!

Take care and have a good day.