I am finally getting to the most recent treatments that I am currently undergoing. As my doctor always says (and I quote): “Let’s see if we can find another option in our grab bag”. And indeed he did.
After the diagnosis of my last CT-scan my doctor immediately suggested to do irradiations of the 3 larger metastasis to slow down their growth. Additionally, a chemotherapy with new cytotoxic agents was suggested by several doctors and I immediately agreed to go ahead. Within 24 hours we had everything planned for the new treatments.
On 26 April 2016, I started with the new (4th type !!!!!) of chemotherapy. The schedule is totally different to my previous ones, but luckily I was again able to do them ambulatory. The two new cytotoxic agents are: Topotecan and Cyclophosphamide.
Topotecan is classified as a topoisomerase 1 inhibitor. Those topoisomerase enzymes control the manipulation of the structure of DNA necessary for cell division and replication. Cyclophosphamide, however, has a different function: it works by sticking to one of the cancer cell’s DNA strands that controls everything a cell does in your body. Hence, with this agent the cell then cannot divide into 2 news cells, and is meant to block further spreading.
Now I do chemo four days in a row, usually starting on a Tuesday and finishing it on Friday. On all four days I receive the two substances as infusion, and each of them is given within 30 minutes. Additionally, I also get 1000ml of liquids starting 30 minutes prior and then continuing during the chemo. The duration in general is only 2 hours in total if no blood test etc. is required prior.
21 days later (counting from the first chemo day) you start with the 2nd cycle, which means every 3 weeks I am meant to do 4 days of chemo.
Apparently, these agents are more compatible and again my doctors were right. After my first cycle I had no side effects, such as nausea or fatigue. Only my blood cells counts are very low, and this time a bit lower than in the weeks before. I got an injection prescribed that helps to increase my white blood cells faster, and within 1 week they were back to normal. Whilst the white cells increased fast, the platelets dropped low and are taking quite long to increase. I am now writing this blog 3 weeks after my first cycle, and my platelets are better but still not back to normal. It is just taking some more time.
My hair kept falling out, and around 2 weeks ago I decided to shave it off. I had enough of vacuum cleaning my bed, pillows, my clothes every morning and evening only because I was trying to save the last bit of hair I had left.
On the 2nd May 2016, I started with the irradiations at my lumbar vertebrae, as this metastasis is in the bone and requires around 3 weeks of irradiations. Since the lung metastases are soft tissue they are only treated with 8 sessions in total, and for that reason we started with those irradiations a week later on 10 May. In preparation for that we did another special CT scan, which is required to calculate the location and high dosage.
In order to ensure you always lie on the same spot and the same position, my entire belly was painted with crosses and tattooed with small dots, which then need to be in line with the laser beam. Only down side is that during those two weeks you are not allowed to bath, but you can shower with little body wash. Luckily it is not summer yet and 3 weeks are foreseeable. This time we are using proton irradiation (not ion beaming like I did in Heidelberg in August 2015) and hence I am able to do them in Stuttgart.
How does photon irradiation work? Photon beams are the same type of beam that is used in diagnostic X-ray machines; just much higher energy photon beams are used. This type of radiation therapy is delivered by machines called linear accelerators (in short “Linac”) and the target is to damage double-stranded DNA, as it is more difficult to repair. Damaging the DNA destroys specific cell functions, particularly the ability to divide or proliferate. Cancer cells sustain more permanent damage and subsequent cell death.
Volumetric Modulated Arc Therapy (VMAT) is one of the possible radiation therapy techniques and used for my spine. In VMAT, as the linear accelerator rotates around you, radiation beams sweep in continuous uninterrupted arcs, tightly pin-pointed on the cancer. Three-dimensional CT imaging technology aids in the precision of the radiation, giving the doctor the ability to see the tumor at the time of treatment.
Additionally, my doctors used image-guided radiation therapy (IGRT), which is an option on newer radiation machines that have imaging scanners built into them. This allows the doctor to take pictures of the tumor and to make minor adjustments (such as the patient’s position) just before giving the radiation. This repetition of imaging can increase the accuracy of the radiation treatment and decrease the amount of radiation to the surrounding normal tissue.
However, a different technique was used for my lungs called “Stereotactic ablative radiotherapy” (SABR), which delivers a large and precise dose of radiation to a small, well-defined tumor. Once the exact location of the tumor is mapped (using imaging scans), narrow radiation beams from a machine called a Gamma Knife are focused at the tumor from hundreds of different angles for a short time.
The proton irradiation is not giving me any side effects at all, and during the weeks when I do not have any chemo I am even able to continue with my rehab. The irradiations are done daily at 14:30 hours and 3 times a week I can do my rehab in the morning starting at 8am or 9am ending at 13:30hrs at the lasted giving me enough time to drive from the rehab clinic to the hospital.
The only downside is that the irradiation team is not used to seeing patients with extremely low blood cells, and they started to freak out every day when seeing mine. For the entire 3 weeks whilst doing irradiations I have to do blood test every day, which is quite annoying as I feel every 2 days is more than sufficient.
The white blood cells dropped down to 600 five days after my last chemo was given (normal value is somewhere between 3000 – 10,000), which means the immune system is very weak and I at high risk for infections. Also my platelets went down to 23,000 (normal value 150,000 – 300,000). With those to blood values being so low, the irradiation team freaked out and reminded me every day to do daily blood tests and even told me off because I dared to sit in the waiting area with other people who could give me an infection. Well, I am used to all this after 1,5 years of treatments and I have already had many infections, fever and bad blood cells before. For my circumstances having those values of 600 and 23,000 is actually not that bad, as I had white blood cells at 100 before. My oncologist however is taking it quite easy and allows me to continue to do my rehab program but I need to still avoid big crowds of people during those days. He calls me now an “expert”.