Etoposide and cisplatin

[rareoldme]

Hi everyone,

This is my first post. I have read quite a few and felt better from doing so over the last few weeks. I’ve had OC removed grade 1c2 and had my first cycle of chemo. Due to start again a week tomorrow and I’m having etoposide and cisplatin.

After my first cycle I had no sickness. Has anyone else had this mix (cisplatin and etoposide on day one followed by just etoposide for two days)

Three days of chemo and I feel like i got off lightly. Can anyone else tell me how they were after this? Did you have three days?

Does it mean I will not have sickness with future cycles? Also used cold cap and wondered if anyone has had any luck with it working well on this regime.

Hope someone can answer if they have had same drugs over the same three days

My cancer is a rare type apparently, small cell, or round cell, both, I don’t know but hence rare old me!

I’m not old, I’m 36 but boy do I feel old!

[LindaB]

Hi I've had cisplatin and etoposide but a different dose than yourself. Mine was called the Rotterdam treatment which is known to be very harsh. It was given overnight and I took etoposide for three weeks on... one week off. I was very weak and poorly. The good news is it shrunk my tumours. I was diagnosed in 2008 with 3c. Following the Rotterdam i had carbo/caylex. I've had 7 rounds of chemo. As for you not having any sickness (lucky you) I suggest you speak to your oncologist or give ovacom a call. Fingers crossed for you that your treatment works very well. xLindax

[rareoldme in reply to LindaB]

Wow that sounds like they hit you with as much as they could! Being lower grade (thank god) I’m not in need as much.

Have you finished now?

[Marzipan]

I had Cisplatin and Etoposide over 3 days every 21 days in 2016. It was considered a strong dose, but I was considered "young enough" and "strong enough" to take it. Well, I was and I wasn't.

Got through 6 rounds fairly well. However, the Cisplatin did some serious damage to the nerves in my feet and hands that is not going away. Small hearing loss as well.

But I celebrate 1 year NED tomorrow! 🎉

[rareoldme in reply to Marzipan]

That’s exactly what I’m having. And what they said about me. How soon did you notice the damage?

That’s great one year and no sign! Wish I could fast forward and be looking back like that.

[Marzipan in reply to rareoldme]

Yeah, I can’t believe I’ve been through the wars, so to speak, and am out on the sidelines enjoying this break. May it last forever!

I noticed the damage after my last round, so there was no chance to tone down the doses.

I now have a mid-severe neuropathy. Little change over 15 months. So likely permanent. It’s a life changer to live with. But the operative word is “live.”

[rareoldme in reply to Marzipan]

Did you have nausea or anything else during the treatment? Did you use a cold cap? How was your hair?

[Marzipan in reply to rareoldme]

My nausea was almost completely controlled by meds. Though some foods and smells were verboten.

They don’t offer the cold cap in Canada so I was rendered as bald as a billiard.

It all grew back. So thankful for that.

[January-2016-UK in reply to Marzipan]

Hello Marzipan, what are the symptoms of mid-severe neuropathy? I had Grade 2 neuropathy from carbo/taxol and so had a reduction in taxol. This eventually reduced to Grade 1 but some numbness and lack of dexterity is still present. This is getting slightly worse as I am now on weekly taxol but nowhere near as bad as my first line.

I agree with your sentiment, the operative word is "live."

[Marzipan in reply to January-2016-UK]

Symptoms are numbness and tingling and pain (I call it raging nerves) and muscle atrophy from the nerve damage. I think the grade depends on nerve testing results. I was graded by a neurologist.

[January-2016-UK in reply to Marzipan]

Hello Marzipan, I didn't spot your reply for some reason. What are the symptoms of muscle atrophy and how did it happen? I've got the numbness and tingling and some little pain. Hoping it doesn't get as bad as first line, when it often felt as if I was walking on razor blades or broken glass or sometimes my head just didn't know where my feet were.

All the best!

[Marzipan in reply to January-2016-UK]

Pretty accurate description! No one explained to me why the muscles atrophy. I thought it was from lack of use because it's so hard to walk, but that didn't really make sense because it struck me down so fast. A matter of weeks. Finally, I was told that muscles require nerves to work. It was an "Ah..." moment.