Dear all, As expected, the last infusion of this therapy was the heaviest. Not as bad as in the last treatment. I don't feel so tired, but more nauseous. Anyway, it's getting better and next week I hope I will be fine before they start again. They won't take any scans untill the end of the next treatment, so officially I don't know anything yet. But I think it's safe to say that I think it's working, because the lymphnodes are still very small. It's not over yet, and it will take some more months, but we're getting somewhere (I hope)! Again I want to thank you all for your support, I don't always have the energy to answer, but every message means a lot to me! Greetings, Harmen
Dear all, After the last time I wrote, things went better. The rest of the week I was more or less ok. Tomorrow I have to get the last infusions for this treatment scheme, the 24-hour-one. I'm a bit anxious about the side-effects, but we'll see. I'm very careful but untill now, I think this treatment might be doing its job! I say this very carefully because writing it down so publicly feels like tempting fate... So, tomorrow I'll be in the hospital in Leuven all day untill at least tuesday about lunchtime. Feel free to hop in! :) (it's quite boring...) Greetings, Harmen
Dear all, I'm very happy about the treatment last week but yesterday I had the second dose. I feel much more nauseous and try very hard not to throw up... Maybe that's because it's the second dose, or because this time I don't get any steroids. Anyway, that's all related to the chemo, and not to the cancer. The lymphnodes are still much smaller than two weeks ago, so I have hope. Next monday I'll get the last dose of this chemo, together with another infusion. I hope it doesn't get much worse. After that, I have two weeks without chemo. That's always nice to look forward to, especially if I would have some good news about the efficiency of this treatment. Bye!! Harmen
Dear All, I'm doing fine! The new treatment is even lighter than I expected. I can do most of the normal things in life without any problems. It's possible that that will change. In the third week of the treatment, they'll give me an infusion that enters very slowly, it takes 24 hours. I allready had this infusion during the last treatment, and I'm not sure if it was this chemo that made me so tired and nauseous. Let's hope not! The weather is fantastic, I feel ok, and if the lymphnodes decide to stay smaller and shrink some more even after the steroids, I'll be a very happy man! Bye! Harmen
Dear readers, Today I called one of the doctors for the results of the scan, and what I feared seems to be confirmed. On both scans (CT and PET) they could see a little growth of the disease. Because I already expected this, I'm not much more dissapointed, but it now seems a big waiste of time and energy, but off course, the doctors needed to be absolutely sure. So, new treatment on monday! Hurray!! Let's see how much more I can get! ... Physically I'm doing fine, if this humongous bubble at my neck wasn't reminding me of my disease all the time, I would be able to forget it sometimes. I try to think about how happy I would/will be if/when I see the next treatment can make it shrink. And I mean shrink forever, because the steroids I get at the beginning of each treatment make the bubble much smaller, but untill now, it always grew back a little bigger, quite misleading... Greetings, Harmen
Dear readers, I didn't go to Italy at last, the doctors wanted me back today and between friday and today there was just not enough time, because we would have gone by car. So me and my brother went to Strasbourg and the Alsace region for three days. Very nice! I coudn't really forget everything, but the changing of scenery did me good. One thing made me worried the last days. The swollen lymphnode (lymfeklier) at my neck/shoulder is getting very big, maybe bigger than ever. This morning at the hospital, my blood was alright, but I asked the doctor about the lymphnode. He said that they prefer to see that the lymphnode gets smaller, but they can not be sure without the PET/CT-scan. However, he spoke about a new treatment starting on monday. I'm not as dissapointed as one might think, because actually I never really believed in this treatment. I still have a lot more hope than I had with the non-Hodgkin diagnosis. I think there are still enough other possibly curing treatments. Of course, I am living with the same uncertainty for 5 and a half months now, and that's sometimes quite exhausting. That's why I really appreciate your concern and support, I can really use it! Thank you very much! Greetings, Harmen
Dear all, Strange title maybe, but I planned to go to Italy for a few days. My brother has a friend, living in Desenzano at lake Garda. He asked me to join him there for a few days, it would do me good. (of course!!) We should have left after my visit at the hospital this morning but they asked me to come back friday, and that's really too short. A pity, but I hope we can go in the weekend. Now I need to apologize to my family and the family of my girlfriend... I will probably not be there with Easter. The weather in Belgium for the next days is very bad... I'm doing quite well though. The results of my bloodtest in the hospital were good enough except for the thrombocytes (the things that stop bleedings), so I'm going back now to get some fresh blood. That explains why my right shoulder is purple-blue-green-yellow, since they placed the catheter. For real news about the lymphoma, I need patience. The PET/CT next week thursday will tell if the current treatment is working. I don't know, but I'm afraid the result will be about the same as the first time... The lymphnode has shrunk a lot right after the treatment, but it's getting back to normal size now, as it did last month. That's all I can say. Let's hope that it's all dead cells now :) Greetings, Harmen
Dear All, You didn't hear a lot about me the last days, but that's because nothing really changed. Everyday is just getting a little bit better, but the recovery is slower than before. I was sooo tired! Another big problem is my appetite. Most of you know me as someone who can appreciate a good meal, but that's different now. I have a very annoying feeling in my mouth and every kind of food tastes different, so it's very hard to decide if I want to eat and what. Of course I need to eat something to avoid nausea. So basically, this treatment is the same as last time, but worse... I hope I will be back to normal in a few days so I can at least enjoy some good days before the next one. That should be possible, as the next one will be in 3 weeks (if they keep this treatment). That's it for now! Bye! Harmen
Dear All,
As expected, I'm back home. I feel very tired and nauseous, and unlike last time, I had to throw up twice today. I like to think that the second day after the beginning of the treatment is always the worst. Let's hope. Within 3 weeks they will take another PET/CT. If the results are good, they'll go on with this treatment. I know I have to hope it does work, but if the next times will be even harder... Sorry, I warned you it could be a little heavy from time to time. See you!! Harmen
Dear all, After I received the e-mail of the pathologist in Budapest yesterday, I immediately forwarded it to my doctor here. This morning in the hospital they came with the explanation. On the first biopsy there could be some doubt. Something about CD2 and CD3 cells, but on the new biopsy this kind of cells were not found at all. Which leaves only the Hodgkin-cells. I guess a doctor would find this explanation very simple, but of course I'm not a doctor. So, let's just believe I do have Hodgkins disease. Today I had a little surgery again, to place the "catheter". Unfortunately they were quite late, and the nurses decided to start the treatment tomorrow, which means I have to stay untill monday afternoon. That's all! Greetings, Harmen
Dear all, Leuven and Budapest don't agree. I just received an e-mail, sent by the pathologist in Budapest. He says he overlooked the pages again and stays with the original diagnosis. He has some arguments that are of course too difficult for me, I've sent the e-mail to the doctors in Leuven and try to hope they can argue with them. I hope this won't be a matter of pride. They are making it very difficult for me to believe in anything... Greetings, Harmen
Dear all,
I don't have much information to share. Tomorrow I will go to the hospital and stay there 'till sunday afternoon. Tonight I was al sweaty again, maybe you don't want to know, but it makes me uncertain. There were dead cells, that can cause the enlargement, but I only have this kind of symptoms since the new treatment. Hmm, I will only be relieved if I see some convincing results. Greetings, Harmen
Dear all,
Later this week, they will start the treatment again, probably on friday. The doctor told me that the pathologist found a lot of dead cells in the lymphnode, which can cause an enlargement, and which could be the result of the chemotherapy. So let's just hope that it works. There's not much more I can say, except for the pain in my arm since I left the hospital on saturday, caused by the infusion. They couldn't find anything bad, like a trombosis, and gave me a cream for it. At this moment I don't feel any difference yet. Before the next treatment they will place a "catheder", to avoid this kind of problems. I haven't got any idea how they do that. That's it for now! Bye!
Harmen
Dear all,
The team of doctors (apparently they have a team) decided that the diagnosis is Hodgkin Lymphoma. I believe that's something to be happy about! I think it multiplies my chances by 2 or 3! The other news is that they will give me the same treatment as last time :s I guess they have reasons to think that the treatment really had some effect. At least this time, they will watch me very good to see what the treatment is doing. I have a meeting with the doctor tomorrow morning, I hope he will make things clear. That's all I can say for now. My hopes are up! Higher than they've been for a very long time! Although I know the treatment will be very heavy! I also would like to thank you all for your support, I get a lot of very nice reactions and I'm very happy you all think this blog is a good idea. I might not always respond to this reactions but please know that I read all of them and every one of them helps me very much! Good night! Harmen
Dear all,
I'm back home since yesterday. I even went to the festivities in my city, because there was the opening night of a festival called "Stadsvisioenen", or City Visions. But that was very tiring, because a lot of things were outside and the night was very cold. About the disease, nothing new, tomorrow I will hear the verdict! To Hodgkin, or not to Hodgkin, that's the question! Sometimes I really enjoy the fact that only I can make this kind of jokes! :) Greetings, Harmen
Dear all, The fever was better today, I didn't take anything and it didn't go much above 38° C. My white blood cells are better too, and if I don't have fever tomorrow, I can go home. The doctor came to tell me some news about the tests they did on the sample of the first biopsy, made in Hungary. They think, actually it's not Non-Hodgkin, but Hodgkin Lymphoma! They wait for the results of the new biopsy to be sure, I will know on monday. I don't know what to feel. (am I repeating myself?) The chances for Hodgkin are a lot bigger than the chances I thought I had now with Non-Hodgkin. So that would be positive. But about a wrong diagnosis... I need some time to let it enter into my mind. So, I'll try to have an opinion one of these days! :) Now, I really need to sleep, to make sure I can go home tomorrow! Greetings, Harmen
Dear all, Yesterday night, my fever came back and didn't go away 'till now. They took all kinds of blood samples and are waiting for the results. I have to stay in the hospital for a few days... The scans went well, I think they'll have the results soon. I'm little worried about the fever though, I hope it will be better tomorrow. The problem is that I don't have enough white blood cells. It's also a very boring environment off course, but it's the best place I can be right now. At least here is a computer with internet! See you tomorrow! Greetings, Harmen
Dear all, The operation went fine, they could take out one lymphnode. The results of the histological examination will be ready next week. I felt ill all day, had a headache and fever and because I couldn't eat anything before the surgery, I couldn't take anything against it. Now it's better, thanks to paracetamol. I need to sleep, I have to be fit for the PET-CT tomorrow. Thanks for reading, and for all the supportive reactions you've sent me!
Greetings,
Harmen
Dear all,
As I told you yesterday, I went to the University Hospital of Leuven today. I'm really sorry for all the Hungarians, but, what a difference!!! It's actually not fair for them! The building, the people, the supportive way they treat you, the time the doctors take to talk and to listen to you, the free coffee, the free meal you get even when you're not hospitalized, just waiting in the waiting room, and I don't even mention the quality of the food! I find it hard to admit, but the people who told me from the start to come back to Belgium, were probably right! But off course, I wouldn't have had my amazing group of friends there. Let's say that I hope I came back in time. There's a lot of things to tell. First of all, they will do a new biopsy (an operation, they cut out a piece of the lymphnode). For two reasons: they think it's possible that the first diagnosis was wrong (because they could see today that the two treatments didn't work at all), or it might be possible that the first lymphoma are sort of "replaced" by other lymphoma, of a different kind. I'm very glad we have an international authority in this matters, Dr. Peeters. They also want to take another PET-scan, the last one was some time ago. Big difference with Hungary: the biopsy is tomorrow, the PET-scan on thursday. (in Hungary I would have to wait at least a week...) If the first diagnosis would be confirmed, things would get a little less positive. It means that the treatments that usually cure this disease really don't work with me. Then they will try a pediatric treatment. Indeed, a treatment they normally use for children with this disease, because it's possible that it could work for young adults. In this, it's really a big difference with Hungary, they wanted to give me the same treatment again, this friday because they reckon you cannot see after one treatment if the treatment is working. So, this is all quite confusing, I don't know what to hope for. But the fact that I really don't know what will be the results of the new tests makes me a little less anxious. Or, as one friend put it, "ignorance is bliss"! Sorry for all the technical stuff! Ask me, if you don't understand everything! Greetings, Harmen
Dear friends,
As most of you know, I have cancer. Because it takes a lot of time to tell each one of you, and because I don't want to disturb you too much, I decided to make a weblog, to let you know how things are going. So it's up to you how much you want to know, how often you want to check it. I warn you that it will be quite heavy sometimes.
My situation right now is like this. (i know most of you know this...)
In November I went to the hospital in Budapest because a kind of "bubble" (don't now a better word) I had somewhere between my neck and left shoulder had been there for some weeks and grew bigger. After about four weeks of all kinds of tests they said I had Non-Hodgkin Lymphoma. A kind of cancer that is quite curable these days, especially for young people. The subtype I have is a little more serious but still, my chances of curing were quite positive. I had 4 chemotherapy treatments in Budapest that didn't work as they hoped. So the doctors decided to give me a more intensive treatment. The first one of these, I had also in Budapest, but it made me decide to come back, something a lot of people apreciated and had been asking for for some time :) This treatment is quite a severe attack on my body, makes me very tired and totally useless. It takes away every kind of wish to do anything at all, quite depressing. So after a few days I called home to ask please to take me back to Belgium... This was almost two weeks ago. I came back yesterday, and I couldn't have thought in this miserable days that leaving Budapest would be this hard. The last week was wonderful. I realised what amazing friends I had made during the six months I had been there, and they were all so sweet... Guys really (this is to my Budapesti friends) you are wonderful, fantastic people! I really really enjoyed my time with you and I'll see you again, I just have to!
So now I'm back in Belgium, with a very mixed feeling. I miss my friends in Budapest very much, but off course I'm here amidst my family, lovely girlfriend and all other so good friends I have here. Tomorrow i'll go to the university hospital in Leuven. I'm worried, because I don't really have the feeling the new treatment is working. The "bubble" is getting slightly bigger and sometimes I wake up in the night, sweating very hard, one of the symptoms of NHL I didn't have before.
So, I hope the doctor in Belgium can give me some new hope.
This will do for a start.
Greetings
Harmen
