Last monday morning, I had another photopheresis at Saint Antoine Hospital.

On arriving, as the temperature was “hot” in Paris, the nurse did not think that I would need my special “heating blanket” to soften my veins, and thus make the machine for the photopheresis works OK…

Also, in order to help make the veins visible, the nurse gave me a soft ball to squeeze in my hand. She gave me a pear-shaped ball. Of course, I started to protest as my regular ball is heart-shaped ;-)! The nurse told me that next time I will have the one I requested :-)!

After two “errors” stopping the machine,  I got my regular heating blanket and after then everything went well!

During the treatment the nurse told me that I had to meet with the “day hospital” doctor before leaving. It was the first time in almost 20 photopheresis. After talking with the doctor, who wanted just to know if I was fine, I told her that physically I was OK but that “the spirit” was not as good. She told me that it was kind of classical: after fighting against a disease like MDS, all the energy is gone and little is left for “le moral”. In the department they have a psychologist who can help people like me. So, I will soon take an apointment with her…

I left the hospital under a bright sun! Of course I was wearing my sun glasses, and long sleeves, as recommanded by my favorite nurse ;-)!

Next round of photopheresis will be in one month, early june.

I am now 23 months after the stem cells transplant. At the end of may and in june, I will have several physical exams to test if everything is working well…

As I always do, I cannot stop here without thanking again my kind graft doctor, my donor, the doctors, the nurses and, of course my family and friends, They know that I love them all!

Take care and enjoy life!

Greetings from Nanjing!

I am now in China, visiting friends in Nanjing and Hangzhou.

My very kind graft doctor allowed me to travel abroad, so I took the oportunity to visit my friends in China!

Here are some photos taken during the trip.

In Nanjing, we visited Niushousha temple (www.niushoushan.net) and Nanjing museum (www.njmuseum.com). I also took photos in Southeast university campus.We also had a boat trip on Xuanwu lake (en.wikipedia.org/wiki/Xuanwu_Lake).

In Hangzhu, I visited Yonghu temple, Taoguong temple, Lingyin temple (www.lingynsi.com), as well as the campus of Zheijian university (http://www.zju.edu.cn/english).

I also posted films, which can be seen at:

In the coming days, I will add more photos…

Next saturday, I will be on my way, back to France…

A few months ago, I mentioned that I was heading back to Earth, after turning around the Moon. I think that I can say now that I am orbiting around the Earth, waiting for the right time to land… It could be in a few months, when I will be free from the cyclosporine I am still taking every days…

I know that if I am “a big success”, medically speaking, it is due to the fantastic team at Saint Antoine hospital, in particular my graft doctor, to my wonderful stem cells donor, and to my family and friends. From the bottom of my heart, I thank them all :-)!

And please don’t forget to enjoy life!

Last dinner in Nanjing tonight: a series of “small dishes”: fish, duck, shrimp, tofou, vegetables, egg, duck blood soupe (good for me as I am a little short in red blood cells ah ah), dumplings,….

What we got for diner! Then it is cut in pieces…

Sweet and oily… but good ;-)!

It is not a “Saint Antoine” :-)!

The oldest tree on campus: 1000 years old (???)

Pomegranate tree…

A typical breakfast at the hotel…

Hello everybody! This time no big news to share with you! But I wanted to show you some photos taken during our short visit to northen Italy, lake of Garde. We met good friends from Boulder there!

We have had an unexpected nice weather: no rain, little clouds, but a lot of sunshine!

I also ate a lot of gellati ;-)! Are we in Italy or not!

Of course, I will never forget to thank the ones by whom I was able to travel: my doctors, my graft doctor, the nurses, and of course my stem cells donor And my family too!

I was lucky enough to find several “Saint Antoine” too!

Here are some photos for you to enjoy:

This week was an important week, as I have several apointments at my two favorite places: Tenon hospital and Saint Antoine hospital!

On monday morning, I had a photopheresis treatment: no big deal, as I already had more than twenty photopheresis. As a thank you for the fantastic nurses working there, I brought a carrot cake and a banana bread: big success!

Tuesday was the day! In the morning, I went to the Tenon hospital at the dermatology department to have the carcinoma treated. On arrival, the doctor put on it a cream containing a photosensitizer, and we had to wait for 3 hours, until the sensitizer could spread in the carcinoma. Then, using a strong IR lamp, the dynamic phototherapy was performed: very hot, but the skin is cooled down by spraying water (by the doctor of course since I cannot move!). It lasted 10mn, then I was expecting to be released…. Not! The doctor checked the whole body to be sure that nothing was left unexplored! Doctors are very carefull ;-)!

We took two buses to then go to my favorite spot in Paris: Saint Antoine hospital! I had a regular apointment with my graft doctor, the famous Doctor Yes! As I had no left signs of GvHc in the mouth and on the skin, I expected that she would lower the amount of cyclosporine I take each day. And yes! She told me that from now the amount of néoral I had to take would be twice 20 mg by day! Big victory! I am so grateful to her! I was looking forward to this great news from months :-)! She also gave me the blood analysis results: almost perfect, with just the red blood cells count being a little low.

She also told me that to stay on a safe side, we should not change at the same time the cyclosporine and the photopheresis. So I will continue my monthly visits to Marceline for the photopheresis!

I am now 22 months after the graft. Between the end of may and the begining of june, I will have several exams to check if everything is OK: it will be my second year anniversary!

I would like to take the oportunity to thank again and again and again my stem cells donor, the doctors at Saint Antoine, the nurses, my wonderful family: if I am here today it is because they did a fantastic job. I love them all!

Take care and enjoy life!

Two weeks ago, I had an apointment with the dermatologist at Tenon hospital. This visit was made as a checkup to investigate if the GvHc was gone and to explore new little problems which might have appeared on the body within a year.

All the clinical symptoms of a GvHc are gone, either in the mouth or on “other parts of the body”. A very good news indead!

But the dermatologist found a “bump” on my right temple, near the ear. As he was not sure of what it was, he took a sample for culture. Two days ago, he called to give me the news: it is another carcinoma. Last year, I had one treated on the left temple. With the doctor, we decided to use dynamic phototherapy to destroy this carcinoma. Once again, we will use photochemistry, my favorite subject when I worked in the lab,: funny! First, “a dye” is injected in the carcinoma, and incubated for a few hours. Then, using a strong infrared source, the carcinoma is burned in a few minutes of irradiation: it is paintful but fast! I will loss some hair in the process too, as a small surface around the carcinoma will be shaved (https://en.wikipedia.org/wiki/Photodynamic_therapy)…

All this will take place in a week… and what a week: monday, photopheresis; tuesday early morning-begining of the afternoon, dynamic phototherapy; tuesday afternoon: visit with my graft doctor, Doctor Oui ( or Doctor Yes!)… She will tell me if she is ready to lower my daily dose of ciclosporine (I keep my fingers crossed!).

I am 21 months after the graft. I am OK but each time I do something (like going to Paris by subway, or walking for a reasonable distance), I am easily tired…

Take care and enjoy life!

This week, coming back from a trip to Ontario, I had two apointments with people from my medical network, both at the Saint Antoine hospital and at the Tenon hospital.

First, I had a new round of photopheresis. My friends the nurses are so friendly and professional! Moreover, the new software driving the machine is so good, that the time required to do the treatment is shortened a lot. Also, as I have a very low body temperature, I spend the treatment under an heating blanket: nice! This time, as I was under “jetlag”, I slept ;-)!

Then, the next day, I had an apointment at the Tenon hospital, in dermatology. It was for a “check up” as I had a carcinoma treated there last year by dynamic phototherapy. My doctor there is also following my GvH c on the skin and mucous membranes on my body. First the good news: according to him, my GvH is gone! This is a very important step, since it might mean that the amount of ciclosporine (neoral) I am ingesting each day could be lowered! Well, this is in the hands of my graft doctor…. The not so good news: the doctor discovered “something” he did not like near the ear. It could be another carcinoma. He took a sample, and we have to wait two weeks before knowing the results. If it is a new carcinoma, I will have to have a new treatment to remove it: phototherapy or surgery, depending on how deep it is in the skin…. other funny days are coming!

After leaving the hospital, as the weather was pretty good this day, sunny and “warm”, we decided to visit the church St Gervais not fare from the “hôtel de ville de Paris”. Beautiful stained glass windows, both old and modern. And a statue of my collegue Saint Antoine too ;-)!

To finish our trip to Paris, we went to a cake shop, where they sell mainly a pastry called “le merveilleux” (http://www.auxmerveilleux.com/the-story/): pretty delicious with a dark coffee!

In 3 weeks, I will visit again St Antoine for a photopheris and an apointment with my graft doctor: it is like I am spending all my time visiting hospitals: a trend for aging people?

Below are some photos taken during our trip to Ontario and also of Paris…. Enjoy and enjoy life!

This week, I spent a lot of time in my favorite spot in Paris: the Saint Antoine hospital! On monday morning, I had an apointment for the photopheresis. Everything went fine, the nurses are fantastic, but a little bug in the sofware driving the machine resulted in a longer stay in bed without moving! It could be worst, as I am under a heating blanket, which makes me sleep!

The next day, I had the visit to my graft doctor. She gave me the results of the last blood analysis: everything is close to perfect! Good news. She also told me, even before I could ask, that it was not yet time to lower the cyclosporine (neoral). I was very disappointed as I was looking forward for a new reduction of the quantity of that chemical I am taking twice a day. Two months ago, it was lowered from 40 mg twice a day to 30 mg twice a day. As I don’t have any clear sign of GvHc, I was looking forward to a new lowering…. Not this time :-(! On the other end, she lowered the amount of stuff I am taking each day to protect the liver… No match with a lowering of the cyclosporine! Since my next apointment is in two months, nothing will happen during this period: bye bye the dream to be cyclosporine-free for the second year anniversary of the graft!

On the bright side of the life, I am allowed to travel! So, we will visit Toronto soon, then Italy, ending with China: yes!

I will add soon a copy of myblood analysis to share with you the good results!

All this is happening because of my donor, of the doctors and nurses at Saint Antoine, and with the daily support of my family and friends!

Enjoy life!

I was silent for a few weeks, but it is not because things are not going well! It is just because I was traveling in France! We visited “Alsace”, which makes the border with Germany.

We visited a lot of interesting places such as the Strasbourg Cathedrale, the historical museum of Strasbourg, “la petite France”, Obernai… We climbed “the month Saint Odile” under heavy rain and in mud… We followed “the road of the wines” as Alsace is famous for its white wines, sparkling wines too (“cremants d’Alsace”). I did not drink too much wine, as I still have some problems at the level of the liver!

Speaking of health, some weeks ago I spoke about the GvHc making, maybe, its come back in the mouth. I think I was just wrong, as I don’t feel anything right now: is-it a sign that the photopheresis is working????? I hope so! I will know more next week as I have an apointment with my graft doctor (I will have also another round of photopheresis).

Another very minor problem I have, is feeling “cold”. Before I did not know what it was to wear a pullover, but now I need to wear more clothe that “before”….

I still have to take several pills every day, but I hope next week, my graft doctor will lower again my cyclosporine… Let’s hope for the best!

Here are some photos taken during the trip to Alsace, including some new photos of my good friend Saint Antoine! Enjoy!