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This morning I was in de hospital for an ultrasound. They would inspect the spot in my liver to find out how it had developed. During the investigation I got the impression that it was hard to find this particular spot.
Of course I have to wait until Tuesday, when we evaluate everything with my hematologist, but it was evident the the spot could not be found. Careful conclusion would be that the spot certainly hasn’t grown and probably has vanished due to the cyclofosfamide. Good news, though the ultrasound doesn’t say it all. Fact is that it has been measured during the last ultrasound. I drove home happily. A was also allowed to have a sandwich.
It was a late call this time, but my radiation was right on time. It was radiation #5. At 17:00 we drive home with a satisfied mind. Now let it do its work. According to my experiences with It will take about 6 to 8 weeks till I will experience the effect. Being an optimist I count with the possibility that our trip to Brittany might just be possible. And if not, there will be nothing to complain about. I live in a nice and comfortable house. So holiday in my own house is not exactly a punishment.
On Friday May 11th an echo will be made of my liver. I hope we can establish that the chemo’s (cyclofosfamide) have had a good effect. Exciting again!
On may 15th I have a consult with my hematologist, where the results will be discussed. We will also talk about the medication that will be administered.
Today I read that Carfilzomib (an improved version of Velcade/Bortezomib with less neuropathy) will be trademarked by the FDA by the brand name “Kyprolis”. If that has any influence on the the possibility of its use for me, I wonder. I hope this will be soon available. It’s always nice to have choices from different options.
Tonight my dearest cat Daisy died. Her death-battle lasted almost a week. She was very brave and purred every time you gave her some attention. I’m happy she didn’t hide out in the garden. I found her this morning in the garage under the table behind some crates. She had stopped eating and drinking for almost a week. Like a strong outdoor cat she followed the rules of mother nature. I’m going to miss her very much, she was a little odd, but a very loving cat. She was really my cat, a bit single-minded. She got a long way even made it to the national newspaper VK magazine. I will never forget her. She will be buried in the garden tomorrow.
 Counting birds together
When I read my national newspaper on Friday, my eyes feel on a pagebig article on de the cd of Wieb Zigtema. Pleasantly surprised, because Wieb and me we played in several band in the en of the seventies. Wieb lives in my village, so we meet on occasion in the supermarket and then we talk, that’s how these things go. I decided to give him a call to tell him about the nice article ask if I could buy his CD. In the meantime I became very curious about his music. Wieb said: “I’ll drop by on my bike and it’s sooner than you can think of.”
To my surprise I found myself in my garden less then 24 hours later having drinks and with a CD in my hands. So nice to talk about things from the present and the past, a golden day.The CD is really beautiful, it’s filled wonderful, small songs. Tasteful arranged, nice lyrics a very nice product. That night, because of my Dexa I was able to take it in completeley. You can listen to some of the songs on his website. You can also find it in Spotify and iTunes or Excelsiorshop.nl My favorites: Neat, Priceless en Wonderful Road. But for peanuts you can have the whole album and then you have a genuine piece of Broek op Langedijk popmusic.
 The Willows Weep Later that afternoon I made my first boat-trip of year. It was a beautiful day.
 Lekker varen
Since yesterday I have my first tattoos. Three small dots, enough for me. Furthermore I have been decorated with fine purple stripes.
After my intake and CT scan I have been marked for the the radiations that are to come.
I will be called soon for the schedule. I look forward to get cracking.
Yesterday I had my 3rd chemo. For me it was a glorious day, because I was self-supporting. For the first time in weeks I drove to Amsterdam by myself. It was very rewarding. When I got home I was tired but quite pleased with myself.
Since about a week I´m on a continues dose of Dexamathasone I makes me clearheaded enough to do things in spite of my pain-medication. It also takes care of past of the pain. It works on the nasty spots. If you are familiar with Dexa, like most of my fellow Myeloma friends, you know the annoying side effects. Being hyper, sleepdisorder, talking too much and too loud. Those a few of all the trials and tribulations you can encounter.A Even with sleep-medication I can´t seem to get more than 2 hours of solid sleep. The the long hours spent lying down. Music in my ears, visits to the bathroom and finally the dawn. In the daytime it takes its toll. A nap in the middle of the day to take me through the evening.
Tomorrow I have my intake and CT – scan fot the new series of radiations. Again there will be five. I hope spot 2 will be taken care of thoroughly. Who knows I will be without pain in two months from now.
I traded y walking stick for a pair of crutches. This I way I can avoid my painful spot a little better. It helps me to take the little stroll from the parking to the clinic. It’s not far but a challenge anyway.
And, I still owed you a graph. It looks positive. When the spots are gone I will be even happier. M-proteins don’t say everything about this illness. I will be exciting….
 Results 14-3-2012
When I was just considering that things were going in the right direction, spot 2 is ruining my easter-weekend. Spot 1 had had radiation and spot 3 was taken along in that action. Spot 4 is a plasmacytoma in my liver, which I can’t feel. I have the feeling that spot 1 and 3 are nicely under control. Spot 3 wasn’t even visible after the radiation. Spot 2 was discovered by coincidence 9 weeks ago during the MRI. I couldn’t feel it at the time even when pressure was applied. Now it’s difficult for me to walk, I suspect spot 2. Tomorrow I have to go for x-rays. Then a consult with the hematologist. Probably arrangements for radiotherapy again. Sh*t happens……. By the way, we sold the caravan a couple of days ago
 Spots
I tried to postpone it as long as possible, but there was no other option: Dexa!!!!!!! Yesterday I took 20 mg, a modest weekly dose. Today I look like a redhead after a sleepless night. Tears in my eyes after three hours listening to my favorite Matthäus Passion. This time in bed on my fantastic Koss headphones. It seems to work though on my painful spot, but I learned I shouldn’t cheer too soon. After my last too early optimism I still needed my painkillers very hard. For about a week or 6 I am capable to little or nothing. The only things I can do is mailing and calling. I follow the news and I have a lot of fun with my Ipad. It seems like I already sold my caravan. This is something I can do from my lazy chair. After one day on the Internet I already had a serious bid, and.. you only need one buyer! If all goes well it will be picked up by the end of the week. One care less.
My painful spot doesn’t get much better, but yesterday I was was back in the hospital again. Ready to receive the results of the PET CT scan I had on Monday. At a certain moment you fear everything, so it’s good to get everything straight. Good news and less good news. The spot on my lymph has gone after the radiation. The spot on my pubic bone has diminished, though I can still feel it. The radiation has been successful and still working. On my liver a new spot is visible, 99% sure a plasmacytoma. It asked for an immediate echoscopy. So after my consult with my hematologist I had my echo. After that I received my chemotherapy. An infusion with Cyclofosfamide, also known as Endoxan. This is a very well known agent, used for several sorts of cancer. The reason that this is administered by infusion and not orally, is that the dose can be higher. Most fellow-patients have had this agent. It’s the C from the CAD cure. I have little problems with the side-effects and this is not to be expected. I will have a cure every fourteen days. In three months there will be a new PET CT scan. Well, and now we wait and keep our fingers crossed that it will work.
Pity…. The idea that the pain was diminishing didn’t appear to be true just yet. I’m still on Oxycontin and paracetamol. The daily level keeps it bearable, but on a regular basis I can have an Oxynorm when it gets bad.
The radiation takes about 6 à 8 weeks to take effect. I will have to be patient for a couple of weeks. It’s hard to get used to.
I have kicked my prednison for about a week, the nights are getting better. I have a great talent for sleeping, but not when I’m on steroids.
Today I got instructions on the telephone for my Monday PET CT scan. Niels already pictured me with Doris & Daisy in that little tunnel. But I was told to leave my pets at home. Monday around noon I will be expected. You are not allowed to eat six hours before. Only water, coffee and tea without sugar or milk. I will be drive again and fortunately Els has a nice book, because the whole session will take about two hours.
On Wednesday I will hear the results. I hope we start the treatments soon.
 PET CT Scan
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About me 
My name is Sander van der Pol, born in 1951. In august 2006 I was diagnosed with multiple myeloma. In my blog I write about my life with MM. I would be happy if you leave a comment or an email. To your health!
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