Good news and not so good news!

Good news and not so good news!

Today, I had my first apointment of the week to an hospital: dermatology at Tenon hospital. It was a “follow up” exam, to check if everything was Ok regarding the carcinoma which was treated by dynamic phototherapy a few months ago.My doctor was happy with the results!

On the other hand, I had for some days a “strange feeling” in the mouth, which remembered me of the GvH I had before. I was not sure the GvH was not making its come back… According to my doctor, not this time! Yes!

Now the not so good news (but not too bad either!): on looking at “the first carcinoma I had a while ago, and which has been treated by phototherapy, my doctor told me that this carcinoma was making a come back! This time we will try at first to treat it with a special cream. This is usually very efficient, but it can hurt: burning, scratching,… It will last 6 weeks. Yes, a new experiment! So happy!

Speaking about another subject: last week, I completed my 3rd stain glass project. Here are some photos related to this:

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I am looking forward for a new project!

Of course, my new “good health” is thanks to the fantastic team at the Saint Antoine hospital, and in particular my kind graft doctor, my anonymous donor, my family and my friends, and to the doctors at the Tenon department of dermatology.

It is not yet the end of the adventure… Stay tuned :-)!

Take care and enjoy life!

I really love you all :-)!

And for the ones who are not yet fed up of MDS, please have a look at:

http://www.youandmds.com/en-mds/home

 

Antibiotics!

Antibiotics!

The last time I met with my kind graft doctor, she concluded the apointment by saying that my immune system was now strong enough and that I did not need antibiotics! So happy!

Ten days later, I started to cough and with the passing days, I started to have some fever… I went to visit my family doctor: rhinopharyngitis.

As she was afraid that I might end up with a lung infection, she gave me, yes, antibiotics!

I was so sorry. I hope I will not upset my graft doctor… Clearly, I am not Superman ah ah!

Anyway, it was time for us to go to Normandy- Cotentin for a few days of “vacations”…

Wonderful weather, nice guests both at the B and B, and the hotel, long walks along the sea, several churches and cathedrales searchs to find statues of my good friend St Antoine,… Here are some photos taken during the trip…

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Take care and enjoy life!

I love you!

 

July 13th 2016 versus July 13th 2018

July 13th 2016 versus July 13th 2018

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Two years ago, when I left room 426 after a month “in confinement”, I was skinny and bald. As my son in law pointed out, I looked like “Mister Clean” ;-)!

Two years later, I am haired and with my “love handles” back in place!

What a change!

Today, I would like to share with you “a letter” which was given to me a few days ago by Laura, from our lab. This letter was written centuries ago by Epicure, a greck philosopher. It is called “Lettre à Ménécée”. You can find it (in French) at:

https://philosophie.cegeptr.qc.ca/wp-content/documents/Lettre-à-Ménécée.pdf

(http://www.epicurus.net/en/menoeceus.html)

I hope you will like it…. maybe you will become “un épicurien” as we say in French…

Today, I am kind of “sentimental”, so I would like to share with you this song by Jacques Brel:

Take care and enjoy life :-)!

I love you all!

 

Landed….

Landed….

On tuesday June 26, two years after the graft, I had an apointment with my kind graft doctor at Saint Antoine. For this anniversary, I had to go through several exams: full blood analysis (remember the fainting guy a few weeks ago?),  a myelogram and a respiratory check. I was not really anxious regarding the results, as I knew that if something wrong had appeared in the analysis, I should have been contacted by my doctor.

The first sentence of my graft doctor was ” the results are perfect”: yes! She went through all the results, explaining us that my immune system was working well, my red and white cells counts were top, as well as the platelets. Myelogram was good too (no blast seen). Chimerism was perfect too, nothing left of “me”. in the bone marrow!

Then my clever graft doctor concluded (she knows that I am always looking forward for this): it is time to lower again the ciclosporine (from 20mg twice a day to 10mg twice a day). And she added: you don’t need anymore antibiotics; also no need for extra vitamins; I remove also the stuff you take to protect the liver. Also, you have photopheresis each month: have two more (monday july 2d, and one in august) and then you will be free!

I was close to cry (or/and make a big hug to my very kind graft doctor)!

On April 26th 2016, when I started this blog, the first paper I wrote was called: from the Earth to the Moon and back: on my way to a cure for MDS. In october 10th, 2017, it was: on the way back from the Moon; in april 28, 2018, I was orbiting around Earth. Today, I landed on Earth!

I decided to come back on the Earth, “landing” in the ocean (see the photo above). For the ones who know me, it would not be a surprise: I love water ;-)! In fact, it is just because it will take some more time to be rescued: in a few months, I will be free of ciclosporine and, I guess, also free of antiviral. At this time I will be “in remission”: ppmhk will be back ;-)! But not exactly the same: half of me will be “a girl”!

Also, there are some funny things I experience every day: “before” I was kind of not sensitive to mosquito bites (well maybe not the mosquitoes we find in Canada ah ah!). Now, each time I get bitten by a mosquito, I react strongly: red and swollen! My doctor explained that it is not uncommon  to see this kind of change after an allograft: “my” immune system is not any more “mine”. It is the one of my wonderful donor! So maybe she is sensitive to this… Also I might also develop some news allergies… I wish I will never become allergic to chocolate :-)!

If I am there today, saying stupid things, it is because I had the chance to meet a fantastic team of doctors, my wonderful graft doctor, nurses and other people at the Saint Antoine Hospital. Of course my anonymous stem cells donor was the key for this fast recovery: it is kind of disturbing for me to have a big part of “me” belonging to “her”, but not knowing her: maybe when I am in the subway going to Paris, I might be seated next to her :-)(or more likely she is from Germany, who knows?)! I do not forget my fabulous family and friends: they have always been around me in the bad days and in the good days…

You are all very precious for me: I love you from the bottom of my heart!

Of course it is not yet the end of the story: there will be other up and down…

To be continued…

Here is a sample of the results for the last analysis I have done:

 

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If interested, you will find a full copy of the results at:

http://xfer.curie.fr/get/LmmKavsbPle/1974_001%5B1%5D.pdf

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