Chemo starts Monday morning

[Hippie]

Hey everyone,

Well meet with my new Onc today, I really like him a lot was really willing to go really into depth with me on all my questions and answered them and made sure I understood.

He wants to spare me the Bleomycin cause of the lung damage it can cause and he says that because my markers are SO close to normal now since my surgery and all tests are back and everything else except 2 lymph node mass's one at almost an inch and the other roughly 3/4. He says both should melt very easly with just 3 or 4 rounds of EP. He said we will make the decision on 3 or 4 rounds depending on how my Ct Scans look after round 2.

My first Onc wanted to do 3xBEP without even knowing any of my test results and he made that decision before we even had new blood markers from post surgery.

I really like my new Onc and trust he knows what he is talking about seeing he did not even want to see me till we had all the test back to know exactly what we had to deal with and that makes me a lot more comfortable then an Onc saying OK your starting Chemo 3xBEP and then start ordering test to see if it is anywheres else.

Dont really know and maybe someone can answer this here but I am assuming without one more drug in the mix it may be a tad less side effects then having a 3 drug cocktail and I like the fact as long as it works to avoid possible lung damage ????


I have actually got myself to a place mentally that I am ready to start to get it overwith. Yes of course I am still very nervous to start but who isnt or wouldnt be...

Seeing another post on hairloss from today or so,, I am shaving my head before Chemo starts cause like I have seen here I get to decide when my hair goes (long ponytail) not chemo or cancer it will be MY timing and to give Cancer a little tease slap around to show it who is boss and that the War is on and I dont plan on lossing... and I love Lance Armstrongs approach in his book that I am reading every time he got sick during chemo he thought of it as puking out the bad and dieing cancer cells cause he says that they got to go somewhere

So I am gettig my laptop ready for Monday morning and bringing movies I figure I can watch roughly 2 movies a day for the 5 days of chemo so I can be the chemo taking, cancer fighting bald movie cridick by the time this is over..

Hippie

[Scott]

He says both should melt very easly with just 3 or 4 rounds of EP. He said we will make the decision on 3 or 4 rounds depending on how my Ct Scans look after round 2.

I wouldn't accept 3xEP without getting an expert opinion. That's not a standard protocol. 3xBEP or 4xEP is.

[Dave40306]

I was going to say the same thing as Scott. 3xEP is not a normal treatment protocol which is probably why the other Onc. said, "OK, it's 3xBEP for you" with little explanation or alternative.

I finished 4xEP at the end of July and my Onc. also originally said, "we're going to follow protocol and go with 3xBEP" but then I questioned the difference between 3xBEP and 4xEP and he said "basically the same results, just depends on who you talk to". Since I did a ton of research beforehand and I didn't want to deal with any potential lung issues after chemo I said, "then let's do 4xEP" and he agreed.

Based on everything I've read, you should NEVER stray from these protocols, no matter what CT scans or blood tests show "after round 2". In my case, everything was back to normal after 2 rounds and I still got 2 more because that's what the experts and NCCA guidelines call for.

I know you said you feel more comfortable with the new Onc. but, honestly, the orginal one you saw might be better informed about how to handle your case.

Yes, the side effects without the Bleo can be less or different but probably not enough to say so (with the exception of the rare but potential lung issues). Ask for Reglan and Ativan as a take home meds for the nausea. They worked great for me and I never puked or even came close.

Good idea on the laptop and the movies but you'll probably get sick of that routine after the first week. I tried to vary things a bit and switch between reading, movies and TV.

Also, get prepared for lots of blood tests (aka CBC or Complete Blood Count). They'll be looking at your platelets, red cells and white cells very closely and you'll probably end up needing shots to bring your levels back to normal, especially after your first round of chemo.

If you have any other questions, don't hesitate to ask!

Dave

[Don]

Good luck Monday... You get through this just fine and before you know it this will all be over.. Monday is just one day closer to being cured!!!! BE WELL!!! DON

[Hippie]

I will bring the 4xEP protocol up with my Onc ASAP, I aint doing this to find out he was wrong on 3x and it doesnt get it all..

On the nausea he already gave me a perscription I dropped off yesterday at the pharmacy and they had to order it and it will be in today called Zoflan, He said it is VERY expensive but he thinks is one of the best and talking to a new friend that she is fighting cancer , she says it is awesome stuff crazy crazy expensive without her medical plan it would have been $1300.00 for 12 pills but she says she has taken while puking basicily and 10 minutes all stops it dissolves on the tongue. My Onc says he will tell my insurance/pharm that it is 100% necessary for me to have this one and he said he can useally get insurance companies to except it..

my first CBC appointment is already made for Oct 3 and I have another appointment set for Oct 6 not sure what that one is for..

I am hearing from a lot of people WATER WATER WATER WATER.. So I am trying to get into the habit for the last week to drink lots of water throughout the day.



Hippie

[Fish]

I hope all goes well for you.

[dadmo]

When I questioned our local onc and those at Sloan Kettering about the use of 3 vs. 4EP I was told that at the end of 3 the cancer will look dead at the end of 4 it will be dead.

[Davie]

Hippie,

First of all good look with the chemo.

I understand you like your oncologist a lot, and he maybe a nice guy, but like others I was totally dismayed by the recommendation of 3xEP. I'm an engineer, but it sounds like I know more about this treatment than you oncologist. Let's face it, any cancer is a life or death situation, and you want the BEST treatment possible from the BEST oncologist.

Also I'm going to be a bit contreversial here, but many people on this forum have been treated successfully by 4xEP. I understand that Sloan recommends 4xEP, but Einhorn at Indiana recommends 3xBEP. Also, I believe most of the rest of the world use 3xBEP as standard treatment, and it is so in the UK. 3xBEP is the gold standard for good risk TC.

I did a lot of research on this before treatment, and found studies in Europe where the survival rates for 3xBEP were better that 4xEP. There maybe only a couple of percentage points in it, but when you are dealing with cancer this matters. I'm at work at the moment, but will find and post these studies later.

I agree, bleomycin does have potential lung damage effects and can even lead to fatality, but it is rare, and the occurence is typically in older patients who smoke and have lung mets. I'll post some research on this.

However etoposide (the E) is nasty stuff and is the cause of secondary cancers (again rare) in later life. Therefore with EP you'll be exposed to more etoposide. Also you have to endure 4 cycles, instead of 3, and this is pretty gruelling.

Your life is in your own hands. I don't wish to offend you but you have an oncologist who is poor, given that is does not even know TC standard chemo protocol.

Don't go into this blind. Do your own research. Get 2nd and 3rd opinions if necessary. Send an e-mail off to the experts (Einhorn et al).

All TC chemo protocols carry risks. Weigh up the 3xBEP and 4xEP risks and rewards and take advice from the experts.

Davie

[Davie]

I found this one. There are reports out there that say 4xEP is equivalent to 3xBEP based on randomized studies, and some that say it isn't. I've never found a report that says 3xBEP is inferior to 4xEP. Type "4EP 3BEP" into google scholar.

http://www.earthtym.net/ref-AFP-test.htm

"Dr. Einhorn responded right away that Culine had presented a paper this week at ASCO showing a cure rate of 96% for 3BEP and 92% for 4EP, with 5 3BEP deaths and 10 4EP deaths. He also noted that he feels that 4EP is far more toxic than 3BEP because of "cumulative platinum related neurotoxicity, anorexia, nausea, and ototoxicity as well as the small risk of leukemia with etoposide at higher total dosage"

Try this for bleo toxicity

http://annonc.oxfordjournals.org/cgi/content/full/14/1/91

"Results:

Fifty-seven (6.8%) patients had BPT, ranging from X-ray/CT (computed tomography) changes to dyspnoea. There were eight deaths (1% of patients treated) directly attributed to BPT. The median time from the start of bleomycin administration to documented lung toxicity was 4.2 months (range 1.2–8.2). On multivariate analysis, the factors independently predicting for increased risk of BPT were GFR <80 ml/min [hazard ratio (HR) 3.3], age >40 years (HR 2.3), stage IV disease at presentation (HR 2.6) and cumulative dose of bleomycin >300 000 IU (HR 3.5).

Conclusions:

Patients with poor renal function are at high risk of BPT, especially if they are aged >40 years, have stage IV disease at presentation or receive >300 000 IU of bleomycin. In such cases alternative drug regimens or dose restriction should be considered"

Davie

[Hippie]

Sorry I guess I was wrong on him wanting to do 3EP.. A lot throught the head over the last few weeks and must missed exacts cause we did talk of BEP and EP. Talked with the chemo nurse today and she said yes absolutely its 4EP for me.. She has had a few guys through there, 2 guys last year was the most recent and they both received 4EP and are doing great and still clean.

On another note first day of chemo today was pretty much uneventful, I was scared out of my wits not knowing what to except of course, but after a couple hours I was eating some snacks I brought and watching a movie on the laptop.. I feel pretty much normal tonight came home and eat a Meatball Sub took a hour nap and continue pounding the water through me. She left a loop in my arm for tommarrow and covered it with a mesh so she said we will use it for a few days or for the whole week if it holds, Little of an annoyance having this on my arm but no biggie.

So one day closer to being cured and looking forward in a weird way to tomarrow so tomarrow night I can say another day down and so on and so forth.

[Scott]

Glad to hear that your standard treatment has begun!

[dadmo]

Good luck with the treatment. I know it can be tough but in a few weeks you'll be cured.

[petep]

good luck with everything - read these forums for advice on what to expect, side effects, things to alleviate side effects etc...that's what i did and learned a great deal from this site.

You will do fine...90% mental...the physical part you'll get thru...if someone ever described what getting the flu is like, you'd be scared to death...but we have all been thru it and make it. This will be no different.

If you check on my name, other posts I've made, you'll see one for chemo tips...

but I'll tell you...probably my worst side effects were constipation after round 3...and I did not take stoll softener or drink prune juice...I did sit on the toilet for 3 hours....all major mistakes...had I been smart and just had some prune juice and gotten off the toilet I would have been fine....

and the other major issue I had was some acid reflux...and not telling the nurse....I could have taken some nexium, which they later prescribed, earlier and avoided many problems....all in all not major problems...but I could not eat for a few days as my esophagus hurt too much...drinking water became a pain...etc...Lesson...keep the docs and nurses informed...

now 5 months post chemo, had my first real haircut yesterday, running and exercising a lot....just pick a date in the future...4-5 months out...and you'll ba beack in the swing of things...for now, just roll with it and be glad you are in the really, really great risk pool.

[Hippie]

Thanks for the info petep, I actually already warned the doc/nurse about I have acid reflux a lot before chemo so they gave me a bunch of samples of something like nexium and when I run out of the samples they will write a scrip for me, I take one every morn everyday through chemo per nurse.. On the constipation already having a slight bit of trouble so I didnt wait at all and had a lovely glass of warm prune juice(yum yum NOT!! ) this evening.. I am trying to stay proactive on dealing with anything that arises before it gets bad, I aint the type to try and "Macho" through anything if something going to help or stop something I take/drink before problem getS bad if I can help it.

2nd day of chemo went well, I was little more tired today and needed a quick power nap to get my second wind then was fine.. other then that no real problems except for the acid reflux one thats being a little bit of a pain but med seems to control well enough so far

Ready for tomarrow to be done so I am over half way done with first cycle and can see the end of round one in sight.

[Fish]

Glad to hear things are going well and that you're staying on top of potential side effects.