Some mixed news, mostly positive, but some less positive as well
Last week, Linnea received a new PET scan. Her last one was done in October last year and already then showed low activity in her tumor.
A PET scan is a high-resolution scan of the body which has a higher chance of seeing cancer cells and also to measure the acitvity in those cancer cells.
The PET scan this time had some fantastic news that we enjoyed for a few hours, but there was some less positive news as well that we found out later.
The great news are that the PET scan showed that the aggressive DIPG tumor in PONS continued to decline in activity and showed "continued poor metabolic activity" according to the radiologist and continues to respond to the treatment.
This is perfectly in line with what we see in the MRIs, and also how Linnea is feeling. She's happy, active, and just looks so much healthier.
And her apetite... it's back again!
When she woke up after this intra-arterial treatment it was the first time since last year that her eye didn't squint even a little.
The activity was measured with slightly different markers, but briefly, activity had decreased by 33% (!) since last October when it was already very low.
It is not inactive, but we are close now and as a result, Linnea is on top and feeling great.
We keep that tumor not only under control, but it continues to respond to the treatment.
On the other hand, our doctors discovered a new spot outside PONS. They have looked at it and confirmed that this is located on the outside of the brain and is another type of tumor (a so-called meningosarcoma/meningioma).
These tumors can occur after radiation therapy and are usually benign in nature. Also in our case it's a huge benefit that it's outside of the brain and not on the inside making it much easier to treat.
The PET scan also showed an active area in the spine of Linnea and we quickly changed the planned MRI of the head to instead scan the spine. It showed that Linnea has tumors along the spinal column, and having gone initially from the worst case scenario where for one hour we thought it was the DIPG tumor that had wandered down the spine, it became apparent that when our doctor treated these new tumors intra-arterially and looked closer at the MRI images that the tumors were not on the inside of the spine but instead on the outside. This is a drastic difference and as strange as it sounds we were relieved.
Most likely, it is the before mentioned meningosarcoma that has wandered down the spine on the outside.
The doctors wanted us to start radiation therapy immediately on Linnea's spine, and they immediatelly injected gold nanoparticles to increase the efficiency of radiation.
This is something that is not routine in normal radiation therapy, but it has been done in a lot of research projects around the world, and it increases the efficiency of the radiation by ~20% without having to increase the dosage of the radiation.
We consulted with our oncologists at home in Sweden because we wanted to see if it could be done at home, we were told that a careful estimat were that it would take 2-3 weeks at the best before we could start radiation at home, more likely even later than that.
In Monterrey they can provide the radiation therapy within 2-3 days, much easier to collaborate between the treating doctors and specialist there. But of course it comes at a cost and now Linneas Spring Fundraiser is more important than ever.
So we decided on radiation in Mexico, it meant that Giedre and Linnea met the radiation specialist two days after the news, and we have a plan, Linnea will start radiation therapy in Monterrey for 4-7 weeks.
The forecast looks good, meningosarcoma responds well to radiation, and Linnea will in a few hours begin her first radiation therapy session.
How lucky are we to be able to be in Monterrey, where we have such specialist, and also the possibility to start radiation therapy within a couple of days after diagnosis.
Because Linnea got gold nanoparticles injected by our fantastic doctors in Monterrey, and she also continues to go through intra-arterial chemotherapy, the doctor who is the radiation specialist thought that it would be enough with 4 weeks.
We will make a new PET scan in 3 months to see the results.
But the prognosis looks good. And most importantly, Linnea can maintain her schedule and treat the tumor in the PONS intra-arterially, something that is extremely important to keep treating.
This is obviously a speed bump along this road for us, and we've been down about the news for a few hours, Linnea and Giedre must stay in Monterrey for at least another 4-5 weeks, and big brother Kristian and me dad at home in Sweden.
But at the same time, this should be a manageable scenario. So far we have had no incidents in the treatment of Linnea for over 16 months, and if we have to endure one, well this one is one we will fight and manage.
We can get started fast with the therapy, time is of the most importance with cancer, and we have to pay for it ourselves, its just under 20,000USD, but we can start right away.
And in all of this, let's remember, Linnea is feeling marvelous, no sign whatsoever of having the DIPG tumor, and the DIPG tumor is of very low activity and responding to the treatment.
Once we get rid of the meningosarcoma, which we will, then we are left with a DIPG tumor that is controlled and almost inactive.
We ask you all to share Linnea's story to you friends, colleagues and everyone, a lot of people together can help Linnea, and we need your help with donations, even more now.
Thank you so much for being with us and helping us.