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I’ve been diagnosed with stage IIIB seminoma with a 25cm tumor (yes, 25cm!) in a right retroperitoneal lymph node. I’m currently undergoing 4xEP for treatment.
I went into my PCP in May after experiencing what I thought were gastric/digestion pain and weird random pains when exercising. Weight loss was a slight concern because of reduced diet from the discomfort, and my stomach started feeling hard.
Initially thinking I had an ulcer and possibly diverticulitis, my doc proceeded conservatively. But after a couple of weeks and same symptoms, I was sent in for an ultrasound.
That was probably the worst day of my life. At 7:30am I was doing a routine ultrasound. By 1:30pm I was back doing a ct scan. By 4pm, my doctor was reading the radiology report to me after asking me to come in. It was probably sarcoma.
Given that I live within driving distance to MD Anderson in Houston, TX, one of the premiere facilities for rare cancers like sarcoma, that’s where we headed. After a week of wrangling insurance so we could get in, we saw the sarcoma doc and scheduled a biopsy to figure out what exactly we were dealing with.
It took about 3 weeks from the radiology report until we found out the results of the biopsy. It’s seminoma! This probably sounds weird to most on here who have a similar diagnosis, but we celebrated. It was a survivable cancer, not an ugly cancer like many sarcomas that can only be recessed and recurrence is high (thus quite low prognosis).
My first round of chemo was done inpatient, and it was rough. I dunno if it was because of the size of the tumor (and the fact I had severe nausea before even starting chemo) or because I was taking Reglin (which I later found out doesn’t agree well with me) or because I succumbed to the fatigue and nausea rather than combatting it with moving around and forcing myself to eat, but I spent several days laid up in bed, plus a 5-night stay in the hospital for neutropenic fever.
I’m currently on Day 15 of my 21-day chemo cycle (round 2) and doing immensely better. My appetite is back, I've managed to stay out of bed for the most part, and I'm feeling strong. I also managed to keep neutropenic fever away.
My biggest takeaways so far are:
1. Chemo works really well. I could literally feel the tumor squashing my organs and my stomach before round 1. After round 1, I felt no sign of the tumor (obviously it’s still there, but has shrunk considerably). My appetite recovered completely and I’m eating like a NFL linebacker.
2. Chemo has terrible side effects that can be managed as long as you stay on top of things by staying out of bed, going for short walks, and really managing your diet. Eat a lot and drink a ton of water. EP is tough with all the hydration/water, especially inpatient where they just pump you full of liters of water intravenously, but I just kept drinking and eating and my side effects are so much better.
3. Neutropenic fever is a crapshoot. While I’m sitting here feeling great, I started running a low-grade fever when the Neulasta shot kicked in (around Day 12 of my cycle, 7 days after the shot was administered). To me, neutropenic fever is the worst, because it means an automatic 48-hour stay in the hospital if not longer.
4. Simply thinking about a hospital food tray makes me nauseous.
5. Speaking of Neulasta, the pain has been intense, but only lasted for about a day. My hips and lower back were spasming for about 14 hours.
I’m going to try rounds 3 and 4 of my EP treatment outpatient, and would love to hear if anyone has any experience or tips for handling EP on an outpatient basis (besides drink tons of water!).
Good luck to all of you going through similar situations and thanks for allowing me to share.
I went into my PCP in May after experiencing what I thought were gastric/digestion pain and weird random pains when exercising. Weight loss was a slight concern because of reduced diet from the discomfort, and my stomach started feeling hard.
Initially thinking I had an ulcer and possibly diverticulitis, my doc proceeded conservatively. But after a couple of weeks and same symptoms, I was sent in for an ultrasound.
That was probably the worst day of my life. At 7:30am I was doing a routine ultrasound. By 1:30pm I was back doing a ct scan. By 4pm, my doctor was reading the radiology report to me after asking me to come in. It was probably sarcoma.
Given that I live within driving distance to MD Anderson in Houston, TX, one of the premiere facilities for rare cancers like sarcoma, that’s where we headed. After a week of wrangling insurance so we could get in, we saw the sarcoma doc and scheduled a biopsy to figure out what exactly we were dealing with.
It took about 3 weeks from the radiology report until we found out the results of the biopsy. It’s seminoma! This probably sounds weird to most on here who have a similar diagnosis, but we celebrated. It was a survivable cancer, not an ugly cancer like many sarcomas that can only be recessed and recurrence is high (thus quite low prognosis).
My first round of chemo was done inpatient, and it was rough. I dunno if it was because of the size of the tumor (and the fact I had severe nausea before even starting chemo) or because I was taking Reglin (which I later found out doesn’t agree well with me) or because I succumbed to the fatigue and nausea rather than combatting it with moving around and forcing myself to eat, but I spent several days laid up in bed, plus a 5-night stay in the hospital for neutropenic fever.
I’m currently on Day 15 of my 21-day chemo cycle (round 2) and doing immensely better. My appetite is back, I've managed to stay out of bed for the most part, and I'm feeling strong. I also managed to keep neutropenic fever away.
My biggest takeaways so far are:
1. Chemo works really well. I could literally feel the tumor squashing my organs and my stomach before round 1. After round 1, I felt no sign of the tumor (obviously it’s still there, but has shrunk considerably). My appetite recovered completely and I’m eating like a NFL linebacker.
2. Chemo has terrible side effects that can be managed as long as you stay on top of things by staying out of bed, going for short walks, and really managing your diet. Eat a lot and drink a ton of water. EP is tough with all the hydration/water, especially inpatient where they just pump you full of liters of water intravenously, but I just kept drinking and eating and my side effects are so much better.
3. Neutropenic fever is a crapshoot. While I’m sitting here feeling great, I started running a low-grade fever when the Neulasta shot kicked in (around Day 12 of my cycle, 7 days after the shot was administered). To me, neutropenic fever is the worst, because it means an automatic 48-hour stay in the hospital if not longer.
4. Simply thinking about a hospital food tray makes me nauseous.
5. Speaking of Neulasta, the pain has been intense, but only lasted for about a day. My hips and lower back were spasming for about 14 hours.
I’m going to try rounds 3 and 4 of my EP treatment outpatient, and would love to hear if anyone has any experience or tips for handling EP on an outpatient basis (besides drink tons of water!).
Good luck to all of you going through similar situations and thanks for allowing me to share.
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