2x Carbo anyone?

**1luckyball** · 07-03-12, 07:37 PM

Hi everyone. Back on 6/7 I had the I/O. (3.5cm classic seminoma confined but there was LVI noted. CT and blood work normal). I had a meeting with the ONCO doc's today. (both Medical and Radiation doc's) Both agree that 2x Carbo is the way to go. I'm in the Philadelphia area, they also confirmed this with Dr. David Vaughn @ the University of Penn (which I believe is one of the center of excellence?) If anyone on here has had 2 rounds of Carbo I would love to hear your experience. Just want to try and get a grasp of what I'm in for. I own / run my own business so this should be fun trying to balance all of this at once. Is it even possible to work while going thru this treatment. Man this whole thing sucks! Just want life to get back to some kind of normal a/s/a/p! Thanks for your time.

**Joseph** · 07-03-12, 09:24 PM

I had 2xcarbo. The first felt like a bad hangover for a few days. The second felt like a really bad hangover with a little nausea for about a week. I was turning wood on my lathe throughout both. All in all it was very tolerable, but each person is different.

**dunc** · 07-07-12, 02:22 PM

I had 1x carbo so can't advise on the 2nd. As they say everyone is different but I found day 3 and 4 the worst with bad nausea so didn't work then. Then another couple of days of fatigue where I would have struggled to work I think, but it was the weekend. Back in work the day after though still a bit fatigued. But they told me at the hospital that some people just work through it.. Best of luck.

**cbvance** · 07-08-12, 11:08 AM

All I had was 1 x Carbo as well, I agree that day 4 was the worst. I had the chemo infused on a Friday and worked from home the following week without much difficulty, I had no nausea but I also had EMEND in the chemo premeds and a slow infusion 4-6 hours rather than a single shot. I was told this reduces side affects and other than feeling very tired and generally crappy for a few days my side effects were minimal.

The neulesta shot did cause some back and joint pain which I took care with a few hot baths and some advil. I also used stool softeners to combat constipation and Maalox for occasional heartburn.

**1luckyball** · 07-12-12, 07:13 AM

Well in about 1 hour from now I will be getting my first dose of poison (a.k.a. Carbo) Can't wait till this is all over! Wish me luck!

**col0608** · 07-12-12, 02:54 PM

Good Luck !

I had 1 dose of carboplatin and it was fine. I think it depends very much on your fitness, age and general health how well you deal with it.

I was offered 2 doses, but declined the other dose as it would have only given me an extra 2% good prognosis, so thought that between the surgery alone and the 1 Carbo my cure % was nearly 96% already.

Rather not put my body through more chemo than is necessary !

I have 100% Pure seminoma, so slightly different from you.

As Charles says, it's not that bad as long as you listen to the doctors and take any prescribed medicine to combat sickness and constipation etc.

My doctor told me that the 1 dose I got was a high dose more than people with bowel cancer or liver cancer would get !

Let us know how you get on.

Col.

**1luckyball** · 07-12-12, 03:40 PM

Thanks for the well wishes Col. I also have Pure / 100% seminoma, but I had LVI so I think thats why they leaned toward x2 instead of just one. I'm not really sure if I like the idea of two, but thats what was recommended to my Onco from Dr. Vaughn (who is suppose to be the "expert" in my area.) Anyway I guess only time will tell if that was a bad idea. So far (knock on wood!) I feel preety much fine. A little sleepy, but thats about it.

**scozzie** · 07-13-12, 04:14 AM

Hey there
I also had 1 x carbo today, finished the infusion about 4 pm Australia time, it's about 7 pm and I feel pretty good, a little light and fuzzy in the head department, had a nice light meal and been forcing as much water in to me as I can hold. Had two types of anti nausea drugs run through the Iv first so I hope that takes the sting out of it. Do have a crappy taste in my mouth though but a good friend who has been through breast gave me a few good tips, the best one for the mouth thing is to freeze the juice from tinned pineapples in an ice cube cube tray and suck on them, it helps with the taste, mouth users if you get them and also gives a bit of hyfration.

Hope it all goes well for both of us.

P.s
The oncology ward was an eye opener for me, it was like a war zone in there man, rows and rows of poor souls.

Colin

**1luckyball** · 07-13-12, 09:40 AM

Well it's a day later and still feeling fine so far.
From what I have read from other people's post
days 3-5 seem to be the worst but I'll take what I
can get for now. Colin I couldn't agree more with your
thoughts on the Oncology ward. Scary ass place to be for sure!

**scozzie** · 07-13-12, 03:15 PM

Same here mate, slept soundless through the night, awake very early though but that's not unusual for me I like to be up and about when the rest of the world still sleeps. Like you I still feel fine still a bit light headed. In a way I was hoping to get the worst of it over the weekend so I could go back to work the middle of next week, ah well just have to go with the flow. I have plenty sick leave up my sleeve but I would like to try and keep a hold of it for useful things like fishing trips when the weather comes good on a weekday. Got some big tuna and real good gummy sharks on the bite for the next couple of months, not sure if i am for the fight yet but I will be happy to be bait boy just to get out there, would be a change from a doctors office or the walking wounded squad at work.
One other thing, my legs feel really heavy and a little achy for some reason, anyone else have that on carbo

Colin

**col0608** · 07-14-12, 05:05 AM

HI Guys.

All your symptoms so far sound pretty normal to me and are similiar to what I experienced on the 1 x Carbo shot.

The 3rd or 4th day is the worse for feeling sick and tirednes, but nothing that you can't handle.

After that you start to recover pretty quick, but just watch on days 10-14 for infection and keep taking your temperature as any high temperature can be a problem.

I also had a metallic taste in my mouth from the chemo attacking your mouth cell, which changed my taste buds slightly. Try and use plastic knife and fork to reduce the sensation and some mints to curb the taste.

I'm sure you guys will get through this without any issues, just keep drinking plenty of water to flush it out your system.

All the best

Col.

**1luckyball** · 07-14-12, 12:09 PM

Two days later and still no side effects. I haven't even had to take any anti nausea meds yet. Is this normal? Not that I'm complaining. Just after reading everyone's post I thought I would at least be feeling some of the nausea side effects by now. Oh well.... this is a good thing! I'am a little foggy and slightly more sleepy but thats it for now. (I hope I didn't just Jinx myself by posting this

**scozzie** · 07-14-12, 04:19 PM

Much the same here, no real nausea, filt a little rough last night but I took the meds and all went good, no loss of appetite as yet. Didn't sleep as well as the first night. The only thing out of the ordinary with me is constant hiccups and my legs still feel a bit heavy and a mild headache.

Colin

**1luckyball** · 07-16-12, 11:24 AM

Today is day 4 (day 5 if you count day of dosage). Feeling good. Didn't have any side effects except for a little fatigue for about two days. Didn't have to take any ani nausea meds either. I guess this will be my last update for this round as I'm pretty much 100% back to normal. I'm due for round #2 on 08/02 so will update then. I really hope the next dose is similar to this, but I'm not counting on it... think I just got lucky this time around.

**1luckyball** · 08-02-12, 06:14 PM

Hi. I hope everyone is doing well. Just wanted to give a quick updated. Today I got my 2nd (and last... I hope) shot of Carbo. So far, so good. I can only hope this round goes as smoothly as the last. Guess I will find out. I will also post a few updates as I go for anyone out there that is interested.
Thanks!!!
Tony

**Joseph** · 08-02-12, 09:09 PM

Good deal.....it'll go smoothly. I had a bit more side effects with the second. A bit of nausea in addition to fatigue....not bad though. I felt like I was about to get sick a few times, but it never happened.

**jeffsonxl** · 08-02-12, 10:06 PM

I was getting through this journey of one dose of Carb, I can still remember after several days feel really tired, but that's a short time, two days later I feel much better and back to work within 1 month without any problem. Wish you are doing great.

**1luckyball** · 08-04-12, 08:31 AM

Two days later and still feeling good. I do have some fatigue but even that's not too bad. So far overall has been similar to round 1 except I have more hiccups. I think I read thats a side effect? With any luck I hope to be 100% in a few days!

**1luckyball** · 08-07-12, 04:03 PM

Day 5 and back to 100%. Blood test scheduled for 8/22. Does anyone know how long they wait after carbo until they do the first CT scan? I can't stand just sitting here with the unknown. Guess I better get use to that feeling.... which to me seems like the hardest part.

**Paul54** · 08-08-12, 05:16 AM

Glad you're getting back to normal speed. I don't recall any protocol or other guys' experience for CT scanning within a certain amount of time after carbo like you would get after a full attack with chemo (3xBEP or 4xEP). I think your CT scanning clock starts running from your last CT scan.

The NCCN guidelines revised in 2012 increase the post-carbo and post-XRT intervals to annual for the first 3 years. Post-surveillance is 3-4 months for years 1-2, every 6-12 for year 3, then annually. Surveillance and carbo intervals used to be the same so there was no radiation reduction benefit like there is now.

You may still be anxious but I'm very positive your have sent the seminoma to hell. Relax and enjoy.
Paul

**scozzie** · 08-16-12, 12:46 AM

Hey there
Glad to hear you got through your second shot of carbo without to many side effects. I was told by my onco to schedule my ct scan no more than 8 weeks from the end of my 1 x carbo, which I did and have another 3 weeks to wait. I don't know if there is a set protocol or not for the time though, all she said was they use this one to set a benchmark for whatever they check for.

Good luck

**cbvance** · 08-16-12, 07:57 AM

I had my Carbo in May, I am scheduled for a CT in September, that's 4 months. I don't want to go too crazy with the CT's fewer is better. That's still a lot of radiation. I think If I'm clear on this next one we go to a 6 month schedule for a couple years then annually.