Tweet
Hi, this is my very first post on this forum. I found this site soon after I was diagnosed, but never had the courage to post myself. It has nevertheless been a great resource, the combined knowledge of the people here is amazing. This will be quite a long post , but please bear with me.
Now to my story, which starts a little over a year ago. After a high-intensity training in February 2015, I had asthma-like symptoms with shortness of breath and chest pain. I've had severe astma as a child, so it was natural to assume asthma. The next day I went to see a doctor. A chest x-ray was made, showing apparently no abnormalities. I was put on cortisone inhalation medication, and the symptoms disappeared after a few days. During the spring I had several appointments with another doctor, and my asthma medication was intensified as the initial medication had no affect. In July I had strange chest pains and some periods of shortness of breath. These eventually disappeared, so I thought all was good. Strangely I did a lot of sports this summer, as usual, and was doing ok. By the end of August the chest pain was back, and my general condition was deteriorating. In September I finally went to the ER, where I was found to have a large tumor in my chest. Naturally I freaked out, since the only cancer in the chest I knew of was lung cancer.
Three days later, after being told I probably have lymphoma, I was diagnosed with germ cell cancer in the mediastinum. My testicles were checked with ultrasound, and while these showed some calcification and strange structure, no actual tumor was found. Therefore I was diagnosed with extragonadal mediastinal nonseminomatous germ cell cancer. The next morning I was sent to the sperm bank (in vein it turns out, I was found to be sterile), in order to start BEP chemotherapy the same day. The first round was however VIP/PEI, due to the tumor obstructing my lungs. After the second cycle of BEP, my bHCG was not declining by its nominal decay speed. My protocol was intensified and changed to TIP, and my stem cells were harvested to be able to move to high dose chemotherapy (HDC) if necessary. After the last round of TIP however, my markers normalized. I was scheduled for surgery to remove the residual mass, which had shrunk significantly. The surgery went fine, and the pathology of the tumor showed immature and mature teratoma. As the tumor markers were still normal, I was put on surveillance. For a month I thought I had beat it, and started planning things that had been put on hold due to the cancer.
This week however, unfortunately, I was told by my oncologist my tumor markers are rising again. There were no spots on the CT to be seen. Now I’m scheduled tor a brain MR and a full body PET/CT to see if anything shows up there. If no isolated spot appears, the next step will be high dose carboplatin and etoposide. I know that previous results of standard HDC for relapsed primary mediastinal nonseminomas are not very encouraging with very low cure rates. Therefore I would like to explore other options. Two studies in particular have caught my attention. First, Shamash et al. have used topotecan-based high-dose chemotherapy (http://annonc.oxfordjournals.org/con...dm002.full.pdf) with promising results, Secondly, Garrett et al. have used a combination chemotherapy consisting of BOP/CISCA/POMB/ACE (http://www.annalsthoracicsurgery.org...99)01472-1/pdf), also that with encouraging results.
My question is, what should be my next step? Should I go with the carboplatin/etoposite HDC after all? Or should I try to find a more novel therapy, like the ones above? Are there any other options than high dose or combination chemotherapies, which are likely to cause severe side effects? I should say that moving to another treatment than carboplatin/etoposite HDC would probably mean relocating to another country (I live in Sweden), and possibly paying for the treatments myself. I am however prepared to take this step, if it improves my chances of recovery.
Now to my story, which starts a little over a year ago. After a high-intensity training in February 2015, I had asthma-like symptoms with shortness of breath and chest pain. I've had severe astma as a child, so it was natural to assume asthma. The next day I went to see a doctor. A chest x-ray was made, showing apparently no abnormalities. I was put on cortisone inhalation medication, and the symptoms disappeared after a few days. During the spring I had several appointments with another doctor, and my asthma medication was intensified as the initial medication had no affect. In July I had strange chest pains and some periods of shortness of breath. These eventually disappeared, so I thought all was good. Strangely I did a lot of sports this summer, as usual, and was doing ok. By the end of August the chest pain was back, and my general condition was deteriorating. In September I finally went to the ER, where I was found to have a large tumor in my chest. Naturally I freaked out, since the only cancer in the chest I knew of was lung cancer.
Three days later, after being told I probably have lymphoma, I was diagnosed with germ cell cancer in the mediastinum. My testicles were checked with ultrasound, and while these showed some calcification and strange structure, no actual tumor was found. Therefore I was diagnosed with extragonadal mediastinal nonseminomatous germ cell cancer. The next morning I was sent to the sperm bank (in vein it turns out, I was found to be sterile), in order to start BEP chemotherapy the same day. The first round was however VIP/PEI, due to the tumor obstructing my lungs. After the second cycle of BEP, my bHCG was not declining by its nominal decay speed. My protocol was intensified and changed to TIP, and my stem cells were harvested to be able to move to high dose chemotherapy (HDC) if necessary. After the last round of TIP however, my markers normalized. I was scheduled for surgery to remove the residual mass, which had shrunk significantly. The surgery went fine, and the pathology of the tumor showed immature and mature teratoma. As the tumor markers were still normal, I was put on surveillance. For a month I thought I had beat it, and started planning things that had been put on hold due to the cancer.
This week however, unfortunately, I was told by my oncologist my tumor markers are rising again. There were no spots on the CT to be seen. Now I’m scheduled tor a brain MR and a full body PET/CT to see if anything shows up there. If no isolated spot appears, the next step will be high dose carboplatin and etoposide. I know that previous results of standard HDC for relapsed primary mediastinal nonseminomas are not very encouraging with very low cure rates. Therefore I would like to explore other options. Two studies in particular have caught my attention. First, Shamash et al. have used topotecan-based high-dose chemotherapy (http://annonc.oxfordjournals.org/con...dm002.full.pdf) with promising results, Secondly, Garrett et al. have used a combination chemotherapy consisting of BOP/CISCA/POMB/ACE (http://www.annalsthoracicsurgery.org...99)01472-1/pdf), also that with encouraging results.
My question is, what should be my next step? Should I go with the carboplatin/etoposite HDC after all? Or should I try to find a more novel therapy, like the ones above? Are there any other options than high dose or combination chemotherapies, which are likely to cause severe side effects? I should say that moving to another treatment than carboplatin/etoposite HDC would probably mean relocating to another country (I live in Sweden), and possibly paying for the treatments myself. I am however prepared to take this step, if it improves my chances of recovery.
It sounds like there is a small tumor somewhere growing. What are your markers now? Have they been highly correlated to your tumor burden so far? Maybe, a CT (don't do PET, it doesn't work) will show a small nodule in a few weeks/a month. You may want to attack that with surgery. You may also want to ask the surgeon to take a whole lobe or half of it to make sure margins are clean. They need to hear this from you. Otherwise, they will just cut out a small piece with the tumor. Explore all your surgery options before you decide on HDC. Note that I wasn't suggesting that standard HDC will cure you alone, but it may be enough to kill newly spread very small amounts. Plus surgery before and after standard HDC, you may perhaps get back on your feet. Hopefully, you will!
Comment