Cisplatin and VP 16 chemo w/ Rad for limited need feedback

[jcawork]

Would like to talk to others who have had this chemo plan and how they did. very nervous about allergic reaction etc....

301-774-2834 call collect .

Thanks,

jen

[Connie B]

Dear Jen,

I hope you come back to the board and read what others have to say, and I hope you don't sit by the phone waiting for it to ring, because I'm not to sure that will happen. But, then again, it MIGHT! Having said all that!

Welcome to LCSC, the board NO ONE wants to be a member of, but those of us that are here, sure are greatful to have this board.

I had both the chemo's you are talking about (9 years ago) and I had radiation treatments as well during my chemo. What is it you wish to know?

EVERY CHEMO is DIFFERENT for EVERYONE! What have your doctor's told you about this treatment and what have they told you regarding side effects?

I honestly understand your fear of the unknown, but I hope to give you some comfort in that MANY MANY MANY MANY MANY .......... people have had this combo chemo and I know of many that had NO major side effects. I was one of them.

I will answer all your questions, but I'm not sure what it is your looking for. Like I said, EVERYONE IS DIFFERENT! You may be one of the MANY that comes through your treatments just FINE! They have come a LONG ways with anti-nausea medications, so please try and not get yourself tooooo worked up and worried. Just by doing that, can upset the apple cart! Our nerves tend to get the best of us, so let us help you on this journey, and see if we can make it better for you.

Stay with us, and we're here to help!

[Cindy RN]

Jen-Connie is right, stay focused on the fact that the chemo is killing off those cancer cells. You WILL get thru this.

If you want, call when they start the chemo. We can chat again while you are getting it done. Who said the medical co. make all the money?? I think the phone companies make as much. I used to talk on the phone while getting chemo.

Love Cindy

[jcawork]

Thanks for the reply's. I read that cis and VP 16 are very old chemo drugs w/ big side effects. I wish newer stuff was being used for sclc but it doesnt seem to be. Gearing up for the start of all the treatments and feel so lucky to have found this place and people willing to share thier experience.

Thanks again.

[berisa]

these two regimens are very common. my dad was doing very good with these 2 chemos with some side effects. But it is tolerable and he gained weights during that period. I can say, during the fight of my dad, that period and the 2-3 months after chemo was the perfect days he had since diagnosis.

read more about our previous posts here regarding this subject and you can go to other forums for information.

God bless.

[john]

Ask about ethyol (Amifostine) it can reduce the side effects. Another combination that seems to work better may be CPT-11 (Irinotecan) and cisplatin.

Ask about carboplatin vs cisplatin also

Carboplatin has fewer side effects but is supposed to be as good as cisplatin.

I think in general concurrent radiation and chemo works the best but has harsher side effects

There are a lot of resources in the DC area. Have you tried contacting the NCI about trials available, Georgetown, Hopkins?

[Addie]

Jen...

I'm pretty new to all this and just finished my first cycle of chemo 2 weeks ago. I'm on carboplatin instead of cisplatin....a choice my onc made because I have a chronic kidney condition. He told me that cisplatin CAN be harder on the kidneys....and in my case, he opted not to use it.

Now...in the absence of an already existing kidney condition...I wouldn't be concerned with a regimen of cisplatin/VP-16 and my understanding is that it's been used for a while because it's effective! The carbo/VP-l6 is also effective for treatment of sclc and both regimens are even more effective when combined with radiation, according to what my onc believes.

Some of what you'll read on the internet is dated....old info...including the statistics on survival! I take all of that with a grain of salt. I'm much more inclined to listen to what the front-liners tell me....the doctors and nurses that deal with all of this daily! I use the internet info mostly to form my own questions....which I then take to my medical team.

My doctor gives me both decadron (steroids) and Zofran (anti-nausea) by IV before administering the chemo and I had not ONE MOMENT of nausea! To tell you the truth, an allergic reaction was my last worry in the face of possible nausea and hugging that ol' proverbial porcelain bowl! Other than a little fatigue right around the days of chemo, I've really felt pretty darn good! Once radiation begins too...I'm anticipating more fatigue...but beyond that I'm just not going to pre-suppose too many side effects unless and until I am actually experiencing them.

I'm finding, as I head off on this journey into the unknown, that THAT'S the part that is the most bothersome.....the unknown is what creates fear and stress for me. I'm doing my darndest NOT to let it get to me. I mentally try to be as prepared as I can...have good questions to ask and otherwise table any worries till such time as I actually EXPERIENCE a side effect....IF I actually do! I mean why worry about "what might happen"? Think of the possibilities, ask questions, be prepared for the contingencies and aware of how your body feels and any changes in that....yes. But worry, stew, fret and make myself crazy with worry? Why DO THAT to myself?

Getting the chemo was no problem. I took a book to read, a journal to write in, a bottle of water and a granola bar or two to snack on. It takes some time out of your day...but otherwise it wasn't a problem. Even if WE aren't too used to it all yet...the nurses are...and they are, for the most part, empathetic and warm and wonderful! I had anti-nausea meds to take at home, as needed or according to a schedule...as well as something to help me sleep, if needed. Beyond those three days of chemo....I didn't even need to take the meds and a Tylenol PM helps me sleep just fine, without needing anything stronger!

Take a few deep breaths, and as others will tell you....trying to image those cancer cells being destroyed by the chemo is a very positive thing to do. Just close your eyes and imagine it in any way that makes sense to you....but keeping such positive images and thoughts IS beneficial. Stress and worry are not good for the body!! Trying to stay relaxed and concentrating on the fact that you are doing something to fight this disease is far more helpful!

Whenever I have my little moments of fear or doubt....I reach out in any way I can to find someone or something to help me combat that fear. I have some great real life and cyber friends who help me stay positive, along with my hubby and two sons. Plus I've ordered a few good books to read about having cancer and how best to fight it!

And of course, reading about some of the success stories and survivorship here....is also a positive boost, along with all the helpful advice, info and support!

Try to remember too, that we are ALL unique and individual.....so someone else's experience won't be ours in EVERY aspect! Keeping this in mind...I try just try to pull as many positive or hopeful things as I can from the experience of others....while not presuming the negatives...if that makes sense.

Sorry to be so long winded....but just a couple of weeks ago I was where YOU are...taking the first major step in this journey, so I can identify a lot with your feelings. Take it from me...at this point, there has been nothing to fear!! I feel I'm in good hands with my medical team...and my doc TOLD me I'd not get sick from the chemo and he was right!!

Trust in your medical team...ask good questions...and try to relax a bit. The road ahead is long....with several cycles of chemo. Set the fears aside if you can...and just make sure you've got some good books to read or some t.v. shows you want to catch up on during this time

Good luck and remember we're here to answer questions too...whenever you have them.[/i]

[Connie B]

Jen,

I just want to add that these two chemo's work very well for SCLC. And I have members in my Support Group that had taken it and did NOT have major side effects, and that was 4 and 5 years ago. The new chemo's come from the same families of these two, and like I said, they also have come a LONG WAYS with the NEW anti-nausea med's. I'm sure you'll do JUST FINE!

When I did my chemo, before I walked into the place I did my chemo at, I kept saying to myself "Connie, you can do this, you won't get sick" I must of said that a thousand times as I was walking in the door, and low and behold I SOMETHING worked!! I didn't get sick. My members didn't get sick either. Please try and get those HORROR stories you have heard over the years out of your HEAD. Things have changed.

I was like Cindy RN, I too sat and chatted on the phone when I did my chemo. Now they have rooms that people sit together and chat as they do there chemo. What ever works!

You'll be just fine. And I know you'll be a LONG TERM Lung Cancer Survivor. This crap is beatable. NO DOUBT ABOUT IT!

Stay strong and hang on, we're here with you and for you.

[hobored]

Connie is right...chemo is different for everyone.

My husband did these cisplatin and vp16 for 9 hours 1st day then vp16 for 4 hours day 2 and 3 . he did great the first set then had a pretty severe reaction the second time we went in. then we did steroids before each time after that. they told us that they did not have many that had bad reactions that often..but when they did it was usually severe. so odds are if they drip it slow and begin with steroids you will do fine. good luck. my husbands diagnosis was changed to nsclc at the conclusion of the combo so now he is doing taxotere. karen

[kitkathi]

Hi Jen,

I know you are probably a nervous wreck but imagine all of us holding your hand while you are going through your treatment. My pops didn't have any reaction to the combo of chemo drugs but did have a reaction to his pain killer oxycotin. One reason why his reaction to the oxycotin was so severe was because he was very dehydrated! I think that a lot of people on this board will agree with me when I say that keeping hydrated is extremely important. I know pops didn't take it that seriously until he started having weird effects from being dehyrated (altered level of consciousness etc). So a piece of advice I can give you is drink lot's of fluids that are hydrating. You really need the water to keep your kidneys functioning since the chemo drugs are so powerful. I just know you will do well! If you do have problems make sure you contact your oncologist right away so vthey can adjust your chemo (if need be). You need to be able to speak up and no be afraid to talk to him/her about any concerns. If you don't feel comfortable with your oncologist, then you need to get a new one. Good luck! My pops was diagnosed last summer with limited SCLC and is doing pretty well NED (no evidence of disease). Sorry you have to be here but welcome aboard. Embrace the people here as the are a wealth of information. Let us know how everything goes!

Kathi