On the PET/CT-scan they could see that the lump at my neck is the only place where the cancer is still active (but very active it is!). This means they can do radiation. That means new hope, so it's very good news. And there is more. There's a new kind of medicin that can help your stem cells to come out of the bone marrow, it's not registered yet, but the results untill now seem to be quite positive. So maybe they can still collect my own stem cells. The results of the blood test of my family can take some time to find out.
The thing is, they will not start radiation before next week, and the lump is growing very fast. I hope it's not going to hinder me too much during the next days, because if it keeps growing like this, it will become bigger than ever before. The radiation itself will not be unbearable, not like the chemotherapy at least. Tomorrow they will make some kind of mask, to use during the radiation sessions, to keep my head and shoulders steady.
Some diversion once more. After these tense moments some of you might remember that our Percussion Orchestra participated in the World Music Competition in Kerkrade. Well, we won it! So we are officially World Champion for the next four years!!!
I want to thank everybody for all the positive messages you sent me, it really means a lot to me!! And I want to ask you to keep your fingers crossed from time to time, because of course it's not quite over yet!
I went to the hospital today to collect stem cells, but I didn't have enough... And, they know they won't get enough for now. Maybe they can try to collect again after another chemo, but for now they're not planning to give me any.
The doctors think I have a very refractive Hodgkin-lymphoma, which means it reacts to the chemo, but only temporary, and starts to grow again after a while. This happens to 5 to 10% of the Hodgkin-patients. So, because chemotherapy is not really working against this cancer, they can try to cure it with radiotherapy, followed by a stem cell transplantation, which will now be allogeneic (from a donor). They need to do a new PET-scan next Tuesday and then they can see if radiation is possible. (everybody fingers crossed!!!) My brothers and parents will go to the hospital monday to test their blood, to see if someone is compatible. (again fingers crossed!!!)
So, this is the verdict, at least untill now. There's a lot of "if's" and I really feel I have to get through the eye of a needle. Of course there is still hope, but this story will end in a real thriller. I can really do nothing but hope. The rest seems to be pure coincidence, and it's beyond my powers to have any influence on it.
As I am physically quite okay, I will try to enjoy this period very much, not to think too much about the future and live day by day. I don't have the prospect of another chemo, and that's about the only positive thing I have to say today :s
The end of my disease was in sight. It was becoming quite a long story, but with the prospect of curing, everything seems more bearable. My disease decided to make it even longer and a lot more uncertain...
Yesterday in the hospital was a horrible day. The psychological effect of the hospital is getting very strong, I was very nauseous and had to throw up three times, also because I was still not entirely recovered from the last chemo. I was very happy my mother joined me there. She took me outside for lunch because it seems I can not eat in a hospital any longer.
About the lump they could not tell me anything yet. They don't think it's scar tissue, because it's getting bigger. They will talk about it on a general meeting of the professors on Thursday. It's possible they will have to do another biopsy (would be the third). So friday I will know more. They also decided to collect stem cells on friday. This week I have to get two injections a day and friday they will try to collect the cells with a special machine. It seems they will have to place another catheter for that, with a local anaesthetic.
Monday I had the heavy chemo in the hospital and I could ask about the new lump. Unfortunately there was no professor there, only an assistant, which is not bad of course but a professor should have a lot more experience. The assistant told me not to worry too much, it could be some scar tissue from the biopsy, reacting with something else... But of course I still don't feel quite at ease with that little lump, which has grown a little since last week. So I've sent an e-mail to one of the professors but without seeing it he could not say anything about it, so I'll have to wait untill next monday.
I hope they will find some explanation to put my mind at rest. And if they don't, I hope they will do a new PET/CT as soon as possible.
Untill now, I think I'm suffering a little less than last month, so that's the good news. I hope it won't take as long as last time, then I could be suffering untill monday.
Some of you only know me as a cellist, but I'm also a percussionist! I'm in a percussion orchestra in a really small village near Mechelen, Zemst-Laar. Yesterday we participated in the World Music Contest in Kerkrade, Netherlands. We were the winners of the day, with 90,10%! Now we have to wait for the second percussion day in the contest, the 31st of July. Then we will know who's the champion! I'm very happy I could attend this competition. By coincidence it fitted well in my chemo-schedule. There was another Belgian band who finished just a bit below and there was a nice friendly-competitive atmosphere ('t is stil aan de overkant en van die dingen ).
So that offered me some diversion from the treatment. But there's also one thing bothering me. Since a few days I can feel a little lump (bobbeltje) in my neck, at the place where the big lump used to be. It's only about 1cm, but it's strange because I couldn't feel anything there for some weeks. On the last scan I could see a lump about this size, so maybe it's just this, but I wonder why I couldn't feel it before. I think (hope!) it's very unlikely that the lymphnodes would grow during the treatment. Especially if the treatment is so definitely working... I'l have to ask the doctors but I'm afraid they will only do a new scan after the next chemo (these scans are very expensive and maybe not that healthy as well, unless I want to be radio-active man)
Monday I will go to the hospital for the third and very heavy infusion (if my blood's allright). I'll let you know what they think about it.
The treatment started without any real problems. The doctors are now talking about the stem cell transplantation a lot because that might be coming closer. There are three possibilities: 1. I won't need a transplantation, that means the disease would be really gone after the chemo. 2. They will do an "autologic" transplantation, using my own stem cells, if the disease is not totally destroyed by the chemo. 3. They will do an "allogeneic" transpantation, using stem cells of a donor, maybe one of my brothers. They do this if my own bone marrow doesn't give enough stem cells.
I'm hoping for the first, because a transplantation is not without risks, and then I would recover sooner. The doctors also said they will probably give one more treatment after this one, possibly without the last (very heavy) infusion. I guess that will be finished around the end of August. So that could be a possible end of the treatment. Or, with the transplantation, about one month later, but with a long recovery to follow.
Reading this message again, I'm afraid it's very technical and a bit complicated, sorry for that! Hope I could keep your attention :)
Monday night I had to go to the hospital. I had fever since the evening before and the doctors wanted to be safe, and it appeared they were right... Only yesterday in the afternoon they let me go. It was four days of sweating. The temperature outside was about 29° C. The first days I had a lot of problems to eat, only the thought of hospital food made me nauseous, but then I discovered I'm not the only one with this problem and they have dietists in the hospital to help those people out. We can choose a few other dishes that aren't made in the hospital. Very basic of course, like toast ham cheese or ravioli out of a can... But it helps. Also, my girlfriend brought me some real food, some pistolekes (that's what we call them in Flanders, a kind of little breads) with good cheese and some fruit. Thank you, baby!!
Monday we start the chemo again. I really hope it's the last one, and it might be because the doctor said they will take stem-cells after this treatment.
So, I'll start enjoying my two days before the next chemo. Fortunately, the weather still allows me to!
A moment some of you have been waiting for! I know I have!
The results of the scan were good. There's still two places where they can see activity from the cancer, but it decreased a lot! So that's all very positive. The negative thing is, they need to go on with this heavy treatment, at least one more time, probably two. My parents rent a house in the Provence in France, and I was silently hoping I could visit them for some days, but that seems impossible now. Okay, you can not want everything, but my summer is going to be very boring and sometimes hard.
But we'll try to make the best of it!
Thanks a lot for all the support, I had so many reactions and I feel a lot better today!
Today's monday and I'm still not at all recovered from the chemo of last week. I'm very tired, my muscles hurt after the least effort, and I'm still quite nauseous. The worst thing is, again, the apetite. I've lost about 6 kg in less than a week! (okay, some of you might be jealous about that) The doctor says it's normal. Every chemo is a new attack on the body, every time again, and my body is getting weaker and weaker. And I had fever as well, which is always exhausting. So, no positive news from me, I'm afraid. I can only hope they'll have some good news for me on friday!
Because they couldn't find any infections and my fever wasn't very high, they started the chemo tuesday. Maybe not the best plan because my fever went up to 40 degrees that night, which was quite a horrible experience together with the chemo-illness. Next morning the fever went down and in the afternoon I could go home. Now I still feel very tired and nauseous, but the fever hasn't come back. I hope I'll be better by sunday. Anyway, one positive thing: the scan is next thursday! So friday I will know something more, finally! Greetings!
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
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