The PET scan last week shows that some local myeloma activity decreases and new arose again; some outside the bone marrow. So some myeloma cells are sensitive to Revlimid and others not at all. That is why my doctor wants to start with Velcade. Hopefully Velcade tackles the myeloma cells that Revlimid can not handle.
Next Tuesday I get the first time Velcade. I get it twice a week for two weeks in each cycle of Revlimid. The current course of Revlimid and dexamethasone continues.
I get Velcade via subcutaneous injection (injected under the skin) which creates less polyneuropathy. Subcutaneous injection is much faster than infusion (the difference between an hour and a quarter). That’s nice.
The two drugs side by side is heavy. Velcade leads to fatigue and the current course makes me also tired. But I do want to suppress the disease and get rid of the local myeloma activity. So we go for it.
A beautiful day for a walk in the woods. We could right away see the strokeable stones of artist Adrianne Verhoeven in the Amerongen forest. Verhoeven has placed large polished granite blocks and boulders in the forest. That sounds like just laying down, but there is heavy equipment used to place these stones.
The granite is indeed strokeable. The stones are beautiful in the woods.
This morning I had a PET/CT scan. Of course we do not have a report yet. My doctor wants to to wait for the scan report before she decides what to do next.
The M-protein is from 20 to 19; my doctor calls this stable. We experience this as bad news. We suspect that next week I’m starting with Velcade. Probably we hear that after Pentecost.
This is a very uncertain time.
Something else now. Last week we were at the Depot in Wageningen. A beautiful exhibition space with sculpture garden in a old university building.
The exhibition of wooden sculptures by Gerhard Lentink was very interesting. Impressive sculptures and great skill in wood working. The large wooden statues came to their right in the spacious rooms.
We also had lunch in the Linnaeus restaurant. That was very good. Definitely a place to recommend. We want to try more of their menu and see more of the art. So we will be going there a few more times.
The Depot: www.hetdepot.nl
Yesterday I have been irradiated for the second time. This time three ribs and an edge of the hip. This prevents hopefully pain to the ribs after sleeping on one side. In other words, now I can sleep on my side again and sleep better in my case. Especially with dexamethasone I cannot get to sleep on my back.
Over a week ago we looked suddenly against a black display in our car’s dashboard. If this digital wonder is broken, you have no odometer or fuel gauge and no more information about the radio. All information gone. But otherwise everything still worked and we could still drive. We only had to guess the speed. Once home, we put in it the TomTom, which also gives the speed. And we had to ensure we had a full fuel tank.
I searched the Internet for broken dashboard display. Turns out that such a display costs € 500. And that therefore there are people who can fix that thing for much less. But for that I had to drive to the province of Limburg. I talked to the men in Limburg and agreed to remove the display myself and send it by post. Removal was a fifteen minute work despite of my fatigue of Revlimid and dexamethasone. Saves me twice a two hours drive. So then we drove a week with a empty dashboard.
Now the display is back again and was built in as rapidly. All information is visible again. And that for a fraction of the price of a new display.
Handy if you’re a bit handy.
More info (Dutch): http://www.renaultforum.nl/forum/viewtopic.php?f=212&t=4818&start=75
Today I was at the clinic in the University Medical Center Utrecht again. The blood levels are OK to continue the third cycle of Revlimid and dexamethasone.
Because of a new lump under my right arm, which my doctor can not explain, I quickly get a PET/CT scan. She does not expect it has to do with my myeloma. This scan also shows whether the current treatment is effective against the myeloma bone lesions.
On the basis of the M-protein (we hear it by the end of the week) and the scan my physician decides to continue the current treatment or add Velcade to it.
Yesterday we were back at the radiotherapist. This past week I had severe pain in my ribs twice. Now it is time for radiotherapy.
We discussed the pain points and immediately after the conversation the points could all be measured under the CT scan. Again I got another few nice black tattoo-points on my skin. On May 14, we come back for one irradiation session. Nice we do not need to come back for more sessions.
Yesterday it was open day at the Metal Cathedral in De Meern. Very nice building and interesting cultural organization. Nice place to take pictures.
We are a big fan of Wallace & Gromit. A stop motion animation film by Aardman Animations. In the short film A Close Shave Shaun the Sheep was seen for the first time. This was followed by many short films with Shaun. But now a feature film with Shaun is produced.
Read an article on http://www.bbc.co.uk/news/uk-england-bristol-12299286
My current treatment does good work. My M-protein has dropped from 26 g/L to 20 g/L. So the disease activity is significantly lowered. That makes us very happy.
It is a heavy treatment (25 mg Revlimid and dexamethasone 40 mg). Especially in the third of the three weeks that I take Revlimid I’m very tired. But it does have an effect. Because of the fatigue I did not make many photos for my animation.
The main character out of my animation film, Karton (cardboard), has evolved in recent years. Karton has also played some roles in earlier films (see photos).
The studio for the recordings has also gone through a whole evolution. Seven years ago there was not much to find on the internet about working with Green Screen (Chroma Keying). I have tried a lot. Different backgrounds and different types of light. Now you can find all this information on the Internet with many Youtube videos.
The background of the studio I painted with chroma key paint (for sale over the internet). That gives the most smooth effect. The lighting now consists of two 400-watt halogen work lights for the background and a 400 watt halogen video light to illuminate Karton. That works. Everything I had before gave too little light.
The first plum blossom of 2013. Changes in plants and trees will come quickly.
To irradiate or not to irradiate, that is the question. This morning we talked about that with the radiotherapist. Reading the report of the radiologist it seemed to me that something had to be irradiated with me. But if there is no severe pain and no risk of fractures, it is not necessary to irradiate.
So we decided not to irradiate. If I get complaints, I can directly contact the radiotherapist. So, wait-and-see.
The main character of my animation, Karton (Cardboard), was created in April 2006. That’s exactly seven years ago.
In a Moleskine booklet of that time I come across an initial sketch. I then wrote several stories for Karton. For one story I also filmed footage in Limburg (in the south of the Netherlands). That was in 2005. Then I did not know who would be playing in the film.
Since that time I am working on a way to film Karton and to let him walk in the Limburg landscape. More about that later.
- Daratumumab receives Fast Track designation in double refractory multiple myeloma
- Potential for expedited development
Fast Track designation is intended to facilitate the development and expedite the review of drugs intended for the treatment of serious conditions and fill an unmet medical need.
Press news: http://ir.genmab.com/releasedetail.cfm?ReleaseID=753764
And now for something completely different. Since last week I make shootings for an animation film. A fine distraction from the turbulence around my illness. I have a lot of pictures taken and I can see movement in the little man. I have many more pictures to take to make a film. So enough distraction for the near future.
If I have enough material for a preview I will show it here.
Yesterday we were in the theatre again. The show ’237 reasons for sex ‘by Geert Lageveen and Leopold Witte. Very funny, sometimes hilarious and mostly full of nostalgia. Sex is also nostalgia, like Geert and Leopold said. They are playing all old records that complete the atmosphere.
In all amusement you’ll almost forget that it is very well acted and the lyrics very well written. It all seems off the cuff and spontaneous done, but it’s all very well-made. White and Lageveen can do so.
The PET-CT scan of last week showed a strong progressive trend compared to November last year. The disease activity is thus increased in the past few months. Lets hope the Revlimid and dexamethasone can suppress all this activity.
Yesterday I started with curcumin. I had already heard a lot about it from other myeloma patients. But never felt the need for information thereon to search. Up to now.
Curcumin is the principal curcuminoid of the popular Indian spice turmeric, which is a member of the ginger family (Zingiberaceae) (source: wikipedia). It has (according to various sources) many positive properties for the human body. Among other things it would keep people with smouldering multiple myeloma (SMM) for a long time from progression.
My doctor has no objections if I use. Now I use alongside with Revlimid and dexamethasone also curcumin. Very curious what it does.
Much information about curcumin and MM you will find on the blog of Margaret. She collects just about anything on this subject: