my seond coming up

[surfhb]

I finished my first cycle of EPx2 on Friday. My body was not fooled. It knew that was a lifetime dose of technically EPx4 but with a 5 year buffer.

Im thinking of pulling out of the second round of EP. the neuropathy in my feet is the worst I can remember feeling it. Sometimes it feels like my feet are burning up and other times it feels as if they are freezing cold. If these look to be lifelong, I’m already hopefully cured by RPLND alone and maybe one EP was enough to kill anything microscopic?

Anyone else go through EPx4 recently and had the same feelings in your feet? Did it go away? Very nervous.

[biwi]

I had 4xEP, and talked about this in my thread. I had relatively strong neuropathy in my hands and feet. Never pain, but definitely warm/cold and some pins and needles. It gradually got worse until about 6 months post treatment, and then got better. At this point (3.5 years from chemo) it is completely gone out of my feet, and only the faintest sensation on my fingers when typing on a keyboard. And I type on a keyboard alot for my day job, it doesn't bother me.

But everyone really has a different experience with neuropathy.

[surfhb]

Thanks Biwi. It helps to hear that it could go away. It’s weird because I can’t remember a thing from my BEPx3 that I did 5 years ago. I really thought I would just casually walk through the first round by my body said otherwise.

[Mike]

You have gone a long way to get through this and stopping just short of the EPx2 goal may end up making it all not worth it if you relapse. Certainly, further treatments from here would be a lot harder to tolerate than another round of EP. Please do your best to stay the course. If you or those didn't know already, Dr. Litwin is a fellow TC survivor too. Wishing you the best, get some rest and do your best to get the last round.

Mike

[surfhb]

Thanks for the kind words mike. Today they gave me an extra hydration bag at a satallite facility and I’m feeling much better. Still some slight issues in my feet but definitly much better. I had been battling some diarrhea for two days now so maybe things were amplified because of it?

I drove to and from Orange County to UCLA 5 days in a row solo after going through 6 hour treatments and of course infusion started at 8 and ended at 4 so it put me in morning and evening rush hour traffic. My onc agrees it’s too much driving. I was averaging about 1.5 hours on the way there and 2 on the way back. So we were able to schedule with my insurance the satallite facility and I’ll be doing my second and final EP 25 minutes from my house with no traffic issues. I think this is going to greatly help keep me active during the final round and hopefully fight off some of the side effects. I’m right on the beach and if I can walk on the cool sand every night I think it would help. Wasn’t able to do that since I was just driving and getting chemo all day with 8 hours of sleep going to UCLA. My onc will also look at possibly adjusting the dosage. She says she should be able to skim 10% off and still have the same cure rate. So now it’s just time to rest up and try to fix what’s going on in my feet. I’m going to try for a jog tomorrow night too if I’m feeling up to it.

I’ve said it a few times before if you are in orange or LA County and you are reading this.....Run immediately to UCLA and see Dr. Litwin. He is by far the most amazing doctor I have ever met and a personal hero. Caring, professional and one hell of a surgeon. All of my stitch work is perfect. I really hope there is a way I can pay him back some day. He is a TC survivor. Freshman year at Duke.

[biwi]

Do some searching on here, there are some folks that have tried having their feet in cold water or such during chemo and felt that it helped? As long as it doesn't change the effectiveness of the chemo its worth a shot trying some things to prevent the neuropathy.

[surfhb]

Do some searching on here, there are some folks that have tried having their feet in cold water or such during chemo and felt that it helped? As long as it doesn't change the effectiveness of the chemo its worth a shot trying some things to prevent the neuropathy.

It’s funny you say that because I was thinking of bringing a small cooler with ice and just letting my feet hang above it to cool them down. As soon as I’m done with treatment each day I can go stand in the ocean for 30 minutes and the water is still 55 here in so cal. I’m hoping that will help. I know they also make “cold caps” gloves for fingers.

[Mike]

That is great to hear that they are able to arrange for you to get treatments closer to home as that had to be a huge pain to drive both ways. I'm not sure that I would reduce the dose just because, but that is obviously up to you and the doc. Once you get all this sorted then perhaps we need to plan a trip to Costa Rica to celebrate. The water is much warmer there. Haha. I spent some time down there surfing before and after my diagnosis.

Mike

[surfhb]

If you are ever on the west coast I will definitely take you surfing. Been to Costa 7 times but more on a kick north and south of there the past 5-6 years.

[surfhb]

Ok so kinda freaking out this morning. My LDH and AFP are both up right now. We started with the tumor markers when I was diagnosed on 12/31.

AFP was 1.8, 1.8, 1.9, 1.7 with Ref Range & Units being 0 - 6.7 ng/mL. My AFP as of yesterday is 3.4.

LDH was 126, 118 and is now 243 with Ref Range & Units being 140.0 - 271.0 u/L.

We did the blood tumor markers again because I am starting my second and final round of Adjuvant EPx2.

Does anyone know if it is normal for AFP to double like that while still staying in the normal range? I keep telling myself it is in the normal range but Im worried now that 2xEP may not be enough to kill everything in my system. My last CT scan showed No Evidence of Disease and it was neck, abdomen, pelvis and chest.

Thanks for helping me during this freakout.

[Harxxony]

I'm sure you don't have to worry about it. As your primary TC didn't cause marker's elevation, there is no point that reccurence would. Don't know much about LDH, but AFP must be over 20-30 to be considered cancer related. I'm no expert, but my best guess is that this elevation is related to chemo. AFP is liver related thing, and liver must be sensitive to chemo for sure.

[biwi]

I would not be concerned. Being still in the normal range I'm sure those are byproducts of the stress on your body from chemo. I would even expect LDH to reach elevated levels, since it is an indicator of cell turnover, not of cancer specifically. LDH can raise after strenuous exercise or tissue damage as well.

[Davepet]

It's too soon to worry, first, your markers are still in the normal range, and the reason there is a "normal range" is that the level fluctuate from time to time. Second, it is pretty common for some markers to rise as the cancer cells die off & release the proteins. This normally happens during round one & than the numbers come back down.

Dave

[surfhb]

Thanks everyone for the replies. It’s hard not to freak out about this even with them being in the normal range. A slight increase yes but almost double seemed to me to be a lot. I really hope they don’t start climbing now that I’m 5 days from being done with this.

[Ryan Bi]

Hi surfhb,

Please calm down, my son had this situation as well during his BEPx3 , first and second round. I almost worried to the roof when I saw his LDH and AFP fluctuated, i cried and could not eat and sleep. But they are all back to normal when and before the Chemo end came. My son was only bhcg elevated when he started BEPx3. It is common, don’t worry please, wait and see, all will be normal.

Best wishes

Amy, Ran’s mom