Happy New Year 2018 for everybody! May all your dreams become realities!

For me, last year was the year of recovery. I still have some small problems, but it is OK: I can live with them! On my way back from the moon, I would say that I am now in orbit around earth, waiting for the best time to land… I am still dreaming of being able to live without taking any cyclosporine.

Last time I visited my graft doctor, she gave me a news I was waiting for: we are starting to decrease the neoral! I will keep the photopheresis once a month, but it is not a big deal…

Once again, I would like to warmly thank my donor, the doctors and nurses at Saint Antoine, my family and my friends: they all saved my life!

Please, don’t forget to enjoy life!

In a few days, on Christmas eve, it will be 18 months since I received the stem cells from my donor. All the doctors, nurses, my donor, my family and my friends did such a great job that I am close to be “normal”! Well, I am still a chimera, with half of me being “a woman” DNA speaking!

Last week, I met with my graft doctor. She gave me the results regarding my blood analysis. As you can see below, it is almost “perfect”! I said to my doctor that I did not remember of having such a nice blood analysis. She answered me: but it is not yours, it is your donor’s blood analysis! Good point!

She gave me a Christmas gift in advance: she told me that it was time to reduce the amount of neoral I am taking each day, since the GvH seems to have “disappeared”  in the mouth, at the level of the liver (reduction of the transminases amount), and on the sexe. I will keep having the photopheresis on a monthly basis, as it is not good to change two parameters during an experiment! Of course, I will continue the other treatments such as antibiotics and the like. I hope the experiment will be successful! And anyway, it is worst a try! If it was a success, I could dream of being “neoral” free for the two years anniversary of the graft, on june 24th 2018!

But I need to be careful: during Christmas time, we are buying small cookies coming from “Alsace”. Those cookies contain “nuts”. After just “a few” of them, I noticed some irritation in the mouth: maybe it will be better for this year to avoid those cookies! In fact, I had the same kind of result when I eated my banana bread contening nuts , or my home-made bread made from “multigrains” flour… My doctor was surprised that I could make my own bread, and asked me to bring her some home-made bread next  time I will visit her at Saint Antoine… Of course I will do it!

For next year, we already have big travel plans: visiting Toronto in february, meeting our Boulder friends in Italy, visiting my good friends in China! We are free to travel!!!

And I would like to take the oportunity given to me to wish everybody a Merry Christmas and an Happy New Year. If I am ready to enjoy this new year, I know that it is because of people in Saint Antoine Hematology dept, of my anonymous donor, my family and my friends! Thank you everybody! I love you all!

Enjoy life!

I am now almost 18 months after being “grafted”, and I am recovering pretty well, thanks to the super medical team at Saint Antoine Hospital, my wonderful donor, and my caring family and friends.

Before the graft, with Jaja, we have tried to learn as much as possible things related to “hematology” and “immunology”. Each time we come close to a new subject, such as chronic GvH or photopheresis, we try to “understand”…. Literature search!

More recently, a question came during a sleepless night: why in the search for a compatible donor in allograft the blood group of the donor does not matter? It is kind of strange since, after the new stem cells start to work to produce red blood cells, there is “old red blood cells” which remain in the body. No risk of having to bloods with different groups? After searching on the web, I came across this paper, which explain that everything in related to the immune system: http://www.nature.com/articles/1703135

Hematopoietic stem cell transplantation between red cell incompatible donor-recipient pairs by S.D. Rowley, Bone Marrow Transplantation (2001) 28, 315-321

Reading this paper makes me realized that I am just a beginner in the understanding of “hematology” and “immunology” ;-)!

Anyway, if I was younger, I would be really interested in taking some classes on these subjects! Doing an internship with people at the Saint Antoine hospital hematology department?

Don’t forget to enjoy life! A big hug to everybody :-)!

Hello everybody! I am back after a week spent in Roscoff-Brittany! At tne end of the post, I will add some photos taken during the trip…

First, some news about “my c GvH” (chronical guest versus host disease). It seems that the “mouth problem” is decreasing, according to my graft doctor and also the dermatologist I met at Tenon hospital. I hope it is related with the photopheresis treatment I have done since a few months (15 times already). As for “the other part of my body”, I started the corticoid ointment a month ago, and it appears that it has real effects: yes! So, I look myself as more stupid than before: if I had spoken earlier of the problem with my graft doctor, it might have been solved already now! Stupid, stupid! And nobody to blame but myself! :-)!

Beside that, I am just fine, much better than 15 months ago! I am still tired very easily after doing regular activities, but looking backward it is really a minor problem!

I am still taking a lot of various pills everyday, including the cyclosporine stuff… I hope one day soon, my graft doctor will ask me to decrease the amount I am taking each day… dreaming, dreaming!

Recently, I have been reading papers on “manded human being, augmented man, and GMO. I am for sure “a manded human being” since my faulty hematopoietic stem cells were replaced by healthy ones from my donor (thanks to her!). But, somehow, I am “an augmented man” since the replacement of the stem cells changed me to be a more healthy “and strong” person (at least on the paper). But I can see myself as a GMO (genetically modified organism) since I have two different DNAs in my body working together! Funny is not it?

Here are some photos taken during our trip to Roscoff (Brittany). I will add more of them later…

Enjoy life!

I am now 16 months after the hematopoietic stem cells transplant.

Last week, we had a regular appointment with my graft doctor at Saint Antoine. She gave me the results of the blood analysis made the week before: all the results are back to “normal” or almost back to normal! In the previous analysis, we noticed a slow decrease of the red cells count, but  it started to climb again in this last analysis. Good news!

Of course I still have c GvH in the mouth but, according to the doctor, it has diminished. We continue photophoresis, with a visit every 3 weeks: not big deal!

Just before leaving her office, my doctor said: your myelodysplasia is now cured. What! I did not expect something like last, even in my wildest dreams! For me, after having a cancer treated, you are “in remission”! What a news!

Of course, things are not over yet. I still need the photopheresis to try to stop the GvH. I also need to take Néoral to reduce the activity of the graft. As a consequence, because of having a diminished immune system, I still need to have antibiotics, antiviral treatment, … 22 pills a day! At first I had trouble when swallowing those pills, but now I get use to!

But, as my doctor is always remembering me: it is not bad to have a little GvH: it shows that the graft is working well :-)!

In reference with the title of this blog, I can say now that I am  on the way back from the Moon to the Earth!

I will never thank enough, my donor, the doctors and nurses at Saint Antoine Hematology department, and my family and friends. Every day, when I wake up, my first thoughts are for you!

Anf if you wanted to know more about MDS, please have a look to this web page:

https://www.cancer.org/cancer/myelodysplastic-syndrome.html

It is very well documented and informative!

A few weeks ago, I asked permission to my doctor to go abroad for up to 3 weeks. She said yes! This trip would be the longest and the farthest away from home in two years… A year ago, I was so weak that I was wondering weither I would be able one day to go to the US again…

We left France on august 28 th to visit our daughter in Toronto. After a few years in London, she and her husband decided to move to Canada.

Toronto is an interesting city, with a lot of things to visit. We enjoyed the Chinese quarter and the Greck quarter (where my daughter is living). There are a lot of parks, which remembered me of London…

After a week, we left Toronto for Boulder. We visited our friends there and hiked “a lot”: it was more like a kind of “test” to see if I was able to survive the high altitude. Everything went well, including a visit to the highest road in the Rocky Mountains National Park: around 14000 feet! We did several pilgrimages to places we like very much: Walker Ranch, Caribou Ranch… Positive tests!

Then we went back to Toronto for a few days, before heading back to Paris… We left “the good weather” for the “rainy and cold weather” of Paris!

We took several photos of the various places we visited. Here are some.

We are looking forward to the next trip, maybe for a longer time… But everything will be doctor’s dependent of course!

Two days after our return, I had another photopheresis at St Antoine hospital. In two weeks, I will have my regular appointment with my graft doctor. Everything should be OK…

(by the way, on visiting Little Portugal in Toronto, we discovered this new Saint Antoine on a small house… So I am not the only one who loves this guy!).

Big anniversay! A year ago, I had a hematopoietic stem cells transplant. Just 3 weeks after the transplant, I left St Antoine Hospital on July 13th. What a year!

When I left the hospital, I was so weak that I had to take a nap both in the morning and in the afternoon. One year later, I am able to bike for a few kilometers in the heat, although on a flat road (in Noirmoutier island)!

For the one year anniversary, I had to pass some exams, like myologram, respiratory test, blood analysis, echocardiography. All the results are “perfect”!

I still have some cGvH in the mouth and in the liver, but the doctor offered me a “new technique” to try to cure it: extracorporale photopheresis. We will know in a few months if it is working….

I still have to take a good number of pills every day, but I get used to so it is not a big deal!

If I am so well it is mainly because of my anonymous donor (a young lady who saved my life), of the extra ordinaire team of doctors and nurses at St Antoine hospital, and last but not least of the day to day support of my family and friends. I love you all!

To finish with a less serious issue: motivated by my frequent visits to the Saint Antoine hospital,  I became a great fan of Saint Antoine. Each time we visit a church or a cathedrale, we look for a St Antoine’s statue, take a photo and light up a candle. So we have now a big crowd of Saint Antoine (some have been given to me by my brothers!). The St Antoines come from various parts of France: Corsica, Normandy, Perigord, Brittany… Enjoy!

(Yesterday I received from my good friend Mercedes from Zaragoza, my first foreign Saint Antoine. Of course I added his statue! Thank you Mercedes).

Hello everybody!

Today is June 21st, first day of the summer! It is also a very important day for me: a year ago, my stem cell donnor started the process to stimulate de production of stem cells in her blood. I now know more about what she had to go through, as she answered me by a long letter! The treatement to stimulate the production of hematopoietic stem cells did not work the first time, so she had to have a second set of injections… The doctors took out the stem cells by “filtration” from her blood, but the amount was a little “small”… they  decided that it was worse trying, taking in account that I was already in aplasia… And the result was perfect, so the doctors did the right choice!

I guess the kind of machine used to recover my donnor’s stem cells is similar to the one I am using for the photopheresis…

First time I saw this machine, I immediatly thought of the kind of “experiment” we could do with it!

Tomorrow will be my 4th visit to the place! I hope that the results will be good, sooner or later!

Enjoy life!

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!