BroFTW

Hello all, It has been two months since my brother had SBRT for the brain metastasis. He receved 5 fractions of gamma knife treatment in September. He just made a control MRI and things are looking good. From a lesion of about 27mm diametar it shrunk to 16x21mm. There is no noticable hemorrhage in the lesion and perhaps no blood vessels. This was expected according to the doctor and expecting to shrunk even more in upcoming months, control scan in 2 months. Meanwhile my brother is feeling fine, although he has some issues with certain smells and foods, this is probably due to the changes in the lesion area. Just sent the scan to the doctor in Turkey and awaiting for feedback. A little more for Turkey. Since in my country we do not have any type of SBRT, we contacted local outposts of Turkey hospitals to check for options, there are plenty of those in Europe for all sorts of medical treatments. The treatment including transfers to and from airport and from hotel to hospital costs 6000Euros and it includes the followup consultations. I am just mentioniong this because I know that if you don't have good health insurance this kind of treatment would cost more. Istanbul has very good hospitals and experienced doctors. This is for anybody that might come across this post. If you need more information you can contact me, I will share what I know.

Have not updated in a while, and while I wish I was writing this sooner, my brother will undergo sbrt (gamma knife) 5 fractions this week. The doctor was not too excited with the size of the lesion which is almost 3cm, but says that there is 80 percent chance for the lesion to be fully eliminated and about 15% there will be a left over tissue. It is a shame that we kind of wasted 3 months, but my brother was just not cooperative on this part and was relying on the initial doctor opinion. (The oncologist is fine but was limited in resources such as precise radiation therapy). So we will see how this goes. The oncologist (new one) says it might take 6 to 8 months for the lesion to shrink to the smallest possible size or to be eliminated. He also suggests regular surgery, but cautioned that it might have effects on the left side of the face and body (losing sense or paralized) especially the face. However he did say that regular at that point might be better than radiation. Stay strong!

The MRI confirmed that it is one met, again neurosurgeon and the oncologist said that it is right on the surface of the brain, nothing complicated for regular surgery...still the skull is being opened. Both of them independently expressed concern about the nature of the tumor. As biopsy has not beenade they are not certain if it is a metastasis or something new. Something about the coloring in the scan...The neurologist also said that there is no imidiate danger for complications. I was a bit amazed that the oncologist dismissed my question about gamma knife, so will have to persist on next appointment or ask another oncologist. The neurologist changed the tegretol with keppra, this improved the balance issues my brother was having after started with the antiepiliptic therapy.

We are discussing options, there is a possibility for a regular operation because it is a surface met, (right side, temporal) but I'd prefer gamma knife. We are waiting for MRI scan and visit the oncologist. Meanwhile, my brother developed a balance issue but it started right after he started taking tegretol (prescribed to prevent seazures) and dexamethasome injections 3 times daily. Anyone with experience on (tegretol) carbamazepine side effects?

Exactly 2 years after the first diagnoses and few treatments, my brother git diagnosed with a brain metastasis. KT of the brain native and contrast scan. Single met 20mm across, current symptoms are that he gets random numbness attacks of his arm and face. These attacks occured few times in the last month. Otherwise he is fine, but I do fear that his mental health will deteriorate after this, which is understandable. It does not appear that there are other tumors elsewhere. We are visiting the oncologist tomorrow to understand what are next steps. Just wanted to share this, my brother was doing great since March 2022 when the scans showed no new progress or new tumours. Will update with whatever the oncologists says. The neurologist says that surgery is possible, will discuss with oncologist if that is advisable.

So back in February2022 my brother got a NED status, but it turned out it wasn't quite so. The technicians missed enlarged lymph nodes in the right supraclavicular region. During spring and summer my brother went through 4 cycles of chemo with irinotekan and 10 fractions of radiotherapy for the enlarged nodes. The lymph nodes shrunk right after the first chemo cycle. Today, two months after the last radiotherapy he is in complete remission. 😀 He is feeling fine, got back to the weight before the diagnosis, which was in May 2021. No symptoms and he is back to regular diet, no nausea or similar. So happy!

Update: Completed the radiation treatment, 10 fractions on supraclavicular region rigth side. No adverse effects so far. Control CT scans, neck, lungs and abdomen in 2 months. Brother is feeling just fine, driving and other daily tasks on his own. Eating is back to normal and even weight is back again to pre-cancer levels, which might be slightly overweight actually . He still takes some meds for the stomach, nolpasa, sometimes valium and now second time this year royal jelly as imunity booster. Hoping for some good news in two months.

It has been a while since I visited around here. My brother is doing fine after the last chemotherapy. Eating well, no issues with nausea or other symptoms. Driving on his own, which he does even when he was going for chemo, but it is a long road and I'd take him to chemo. No scans have been made since the last CT scan in February, and that worries me a bit. In 2 weeks he is going for a radiotherapy simulation, and then on 15th of August starting with radiation, 10 fractions aimed at the supraclavicular nodes that use to be enlarged. I really hope 10 fractions and the lower intensity will not cause much side effects. Anyway, he's been having quite a good periods of no worries 2 weeks now, and a month ahead.

An update. My brother is feeling great at this point. He is receiving the 4th cycle (cycle: 3 weeks, once weekly, cisplatin+irinotekan, irinotekan, irinotekan, one week rest). The funny thing is just after the first therapy of the second cycle he got covid. He did not have much trouble with that, just some vitamins and check ups, but he missed the 2nd and 3rd therapy. I said funny thing because after covid he stopped having any issues with nausea and intolerance to some foods. His diet improved greatly. I don't know how covid works, but that was a nice side effect. 😀 After the 4th cycle ends, he will have radiation (10 fractions) for the supraclavicular nodes, which are not enlarged now. Oncologist did not asked for any scans now. Will check with her before radiation starts.

Hi Nguyentuan, Thank you very much for writing. The first thing I noticed reading the stories from different people ontbe internet is that indeed everyone's journey through this is quite different. Best wishes to your mom and your family.

Second dosage of chemotherapy tomorrow, irinotekan 100mg. Brother says that he can feel the lymph nodes are shrinking, which meand it is still sensitive to chemotherapy. Does not seem that any tissue is involved, hoping it will be sufficient only to be treated with chemotherapy. Blood results are good. @KatieBi I am not aware of such tests in my country, unfortunately immunotherapy is not available for sure.

An update, oncologist suggested chemotherapy initially. Dosage 100mg cisplatin and 100mg irinotekan today, and then two weeks 100mg irinotekan for just one day. Has anyone met such such a scheme for this?

It turns out the happy news didn't last too long for my brother's NED. After review on the scans of the neck region, the doctor found 2 enlarged nodes, 25mm each. Visit to the oncologist on Tuesday. I am hoping that it is not the cancer, but hopes are slim at this point. Anyone with any experience on such occurances?