This is getting frustrating. My blood was not very good, but in normal circumstances good enough. The problem was that I have fever, since yesterday. They need to do some tests to see if I'm not infected or something because that might be dangerous. When they start the chemo my white blood cells go very low, then my body has almost no resistance to any infection.
As you may have guessed, the doctor postponed my chemo. Once more not enough white blood cells. This time they gave me an injection for my body to start producing them. If my body 'obeys', my blood should be alright by monday, then I'll have to go back. Like before my feelings about this are a bit mixed. Of course I enjoy these few days' grace, but it will also prolong the entire process. The doctor also told me the long expected scan will only take place TWO weeks after the chemo, and not one as I was hoping. They are lucky I'm such a patient patient! (haha!)
The Hospital just called me to say they have no rooms free tomorrow, so the next treatment will be later, probably thursday. So won't be there tomorrow! (In the mean time this website changed as well! Now Icanchange my layout!)
Hi everyone, It's been a while, but I don't want to bore you by writing ten times the same. This second "Gemzar"-treatment is comparable to the first one, so last week I felt a bit nauseous but only for two days and tomorrow is the day I have to sleep in the hospital, the beginning of 4 or 5 tough days. And then next week finally... the PET/CT-scan! After that, they can really see how this treatment is working and how much more of it I need to be cured. Of course I'm dreaming the doctors will say "Hey, it's enough! You're cured!" But one of them already told me they usually need four treatments. I'm not looking forward to two more... And at the end there's always the transplantation of stem-cells. I don't need to tell you that this chemos are weighing heavier and heavier, since this is chemo nr 8, and it's time they come to an end. I'll just have to wait for the results. So, tomorrow afternoon, I'll be in Gasthuisberg, Leuven, feel free to hop in! Greetings, Harmen
Dear readers, my white blood cells were okay today, so they've started the second "Gemzar"-treatment! They have strange names for all the chemo schemes. The first one was "Chop", the second one "Dhap". I feel a little bit nauseous, but not too bad. I will go to bed early, the next days will be better. I had read stories about it, and now I start to feel the same: when I enter the hospital-building I start to feel a tiny bit unwell. A psychological thing I guess, because the last days I felt really good. It must be the memories of the nausea I had last time, it gets a lot worse when they offer me a hospital-meal... :s And this week I have to go there every day... So, the extra week of recovery was nice, but it makes the start of a new chemo much harder. But things will be better in the morning! Good night! Harmen
Dear All, This morning I was in the hospital to start the next chemo. But after the blood-test they could see that I didn't have enough white bloodcells, so they decided to wait one week to restart the treatment... Actually, I should be angry or sad, but to be honest, I was quite relieved. It's just one more week to feel okay :) I still believe the treatment is doing it's work, so I keep the spirit up! Greetings! Harmen
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
