DSRCT

DSRCT

About this blog

In January of 2006 my wife was diagnosed with Desmoplastic Small Blue Round Cell Tumor, also known as DSRCT, which is a rare and extremely aggressive form of cancer, usually with poor prognosis for survival.

After months of extensive chemotherapy, several operations, and more chemotherapy we thought she might have an actual chance of surviving. After two weeks of cautious hope our world was destroyed yet again when a scan showed that new tumors were growing in both lungs. There were no more medical means to cure her disease, and eventually she died on January 9th 2007.


To help others who are in a similar situation, my wife and I made this blog, where her entire treatment course is described in detail as a kind of diary. The blog also contains a short description of all the medication that has been part of the treatment.

December 21st, 2006

DiaryPosted by Jacob Juhl 2006-12-21 20:09:03

A few days ago Mette started feeling ill - headaches, dizziness, pains in her back, breathlessness - so we went to the hospital yesterday to see what could be done. X-rays were done, and they showed that something was going on in Mettes left lung, maybe fluids or blood. So today she was hospitalised for further examination, and an ultrasound scan. The scan showed a large amount of fluids in the bottom of her left lung. A large quantity of blood (approx. two litres) was drained from the lung, and further scans showed a tumor in the lower region of the lung, approx. 3,75 cm in size.

The last tumor measurements were 11-13 mm, measured on October 26th, meaning that this particular tumor has grown about 2,6 cm in eight weeks. Which is scary.

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December 17th, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:53:06

Finally we have documented all of Mette's past journal on this blog. From now on it will work as a proper diary/blog. As you may have noticed, the names and dates of the earlier posts didn't actual match, as we only started this blog in December, but wanted to document the entire course on the blog.

Mette's general health is really good, she hasn't been better in the past 12-13 months. She has a few side effects from the Sutent pills, but it's really nothing compared to the side effects of chemotherapy.

She has received Sutent pills to last her for the next two months, as the latest scans haven't shown any significant tumor growth.

We are really looking forward to christmas, and Mette has been in a very "christmassy" mood for the past couple of weeks, buying billions of presents for the kids. As she puts it herself, "Maybe this is the last christmas for me..."

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December 14th, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:44:17

Mette and I often talk about how our mood changes from day to day. Mostly we exist as a normal family with our two children; during the day I go to work part-time, the kids are in kindergarden, we come home, eat, talk, some tv, go to bed, and sometimes we talk about our difficult situation. But generally we have come to terms with the situation, and try to deal with the fact, that in a couple of years or less Mette will not be around anymore.

Yesterday we had one of our sessions with our psychologist from Kræftens Bekæmpels (a danish organisation fighting cancer), and told her that everything was pretty much on the upside, that in our everyday life we try not to think too much about cancer and death. And that was how we felt. But today both of us feel like sh*t, Mette cried on the phone to her mum, I tried to go to work, but had to call in ill from the car, and got out at a parking lot and started crying all of a sudden and couldn't stop again.

Tomorrow may be a really good day.

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November ?, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:43:26
Mette gets Sutent pills to last her a month, after which she will be scanned, the size of the tumors will be compared with the latest scans, then another month of Sutent and so forth. If the tumors continue to grow at their normal rate, the Sutent treatment will be stopped.
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November ?, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:40:58

Meeting with doctor about future cause of action.

Chemotherapy is out of the question for now, because Mette's immune system is still very affected by the chemo treatments.

The doctor wants to try something new, a drug called "Sutent", which has not been approved for DSRCT, but others have had positive results with prolonging the lives of Ewing- and DSRCT-patients.

The pills are extremely expensive, and have to be approved by the Second Opinion Commiitee, which takes about a week.

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October 30th, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:33:03

Meeting about the first control scans.

Multiple metastasis in both lungs. That was quick. The largest tumors are 13mm. Which means they have grown from nothing to 13mm in 6-7 weeks.

Naturally we are devastated. We knew the disease might reappear, but didn't for a second think it would happen so fast...

There is no treatment now. At best there may be some medication that can prolong Mette's life, but she will never be cured. We cannot help but to calculate...if the tumors have grown this much within so little time, when will they have reached the size they had, when Mette was first hospitalised in January? Six months? Eight? A year?

Nothing is certain anymore. Except that cancer will take Mette away from this world.

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October 6th, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:26:02

Scans from a week ago show no signs of metastasis.
Mette's general health is getting better each day.
We are beginning to hope. We know that there is an actual risk of metastasis, but we try not to think too much about it, and just LIVE as best we can.

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September 26th, 2006

DiaryPosted by Jacob Juhl 2006-12-17 10:20:28
Mette rehospitalised to get blood transfusions.
Feels weak, has red burning rashes in her armpits, on hands and feet. Looks like open wounds and her hands and feet are very sore. Her immune system is almost non-existent despite the Neupogen treatment. It is decided that Mette can tolerate no more chemotherapy. From now on she will be scanned regularly.

This came as a bit of a shock to us because we had figured we would have time to get used to the idea that Mette ended her treatment, that there was no more available treatment, that all we could do was wait for the regular scans, wait for the tumors to reappear...

We are once again informed that DSRCT has a tendency to metastasize....
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