Chemo Questions..... Have you did one of these drugs?? Tell me about it

idlehunters · June 2009

ok....doc told me what my "cocktail" will be today... isnt that what it's referred to? I get my port installed Tuesday and start wednesday with the chemo. Oh yeah...that port thingy... they said I have to put this cream on the port 30 minutes before chemo to numb it so it dont cause any discomfort prior to them starting chemo????? I never heard any of ya'll talk about before. Is this something ya'll do?

Now.... my coctail is Avastin, 5FU and Leucovorin, and Camptosar. Is that a lot? I told them to hit me hard... is that hard? ok.... now.... what do I have to look forward to? They went over some side effects I have heard ya'll talk about like red hot face and feet, sore lips/gums, diarrhea, nausea, hair loss????? How soon hair loss???? Where do you get wigs? Will you share with me again your trade secrets on how u deal with these things..... I got the herb factor down straight...lol.

Today was also the first time I ever seen my insides on film.... my cancer has progressed since I have not had any treatment yet. Went from 4 lung nodules to 18. 1 liver nodule to 4. The largest nodule in liver is right next to vessel...

Buzzard said it good..... I will kick this beasts a**.... I am taking back what is mine...MY BODY!!!!

Jennie

Buzzard · June 2009

Great Start Jennie....
Although I haven't done Avastin or Campostar I do know that taking your body back is one of the best meds you can take in this fight...now there will be others come in to tell you about the cocktails but just remember......Kick its Butt cause we don't take no prisoners here.!!!!

PhillieG · June 2009

Cocktails on Me!
Yes, that's the normal cocktail. They make it sound inviting, like a martini or something.
I'll have a Avastin, 5FU and Leucovorin, and Camptosar, shaken not stirred. I had the same thing minus the Camptosar. The port cream is something some do to numb it out so you don't feel the needle prick. I've been pricked more times than Paris Hilton so it really doesn't bother me anymore. I never used the cream, it's probably the least amount of pain this whole thing has put me through but that's me. Everyone has a different tolerance to pain so go with the cream first and take it from there.

You most likely will not feel all the side effects at once. I never lost my hair, it thinned a bit but I never lost it. The herb thing works for me, others like other things. I have a CD with my guts on video. I'll watch it instead of American Idol any day of the week. It is amazing what they can do and to see it in you sort of gives it a face so you know what you are dealing with. I also did a port one day, chemo the next. Back to side effects, you may have some, all or none of them. Again, we are all different. I guess that's why it's so hard to kill this crap
Good luck Jennie, kick butt
-phil

amcp · June 2009

Chemo
Jennie
Those are all the chemo's that Frank took which did shrink the liver tumors enough for him to be operated on. Hang in there ...Frank never was given the cream for his port...I did see one man had a spray that they used before they accessed his port. Good luck ...in my thoughts in prayers.
Hugs,
Anna

Shayenne · June 2009

amcp said:
Chemo
Jennie
Those are all the chemo's that Frank took which did shrink the liver tumors enough for him to be operated on. Hang in there ...Frank never was given the cream for his port...I did see one man had a spray that they used before they accessed his port. Good luck ...in my thoughts in prayers.
Hugs,
Anna

Hey Jennie!
Sounds like the Folfiri regimen I am on! And yes, I use the cream to put on my port site before they stick me, it has nothing to do with the chemo, it's just a cream that numbs the skin, I put it on an hour before they stick me (glob it on, don't rub it in, then put a piece of saran cling wrap on top of it so it doesn't make your shirt wet when you put it on)...it does work, I don't feel the stick at all.

I just finished my 6th treatment of Folfiri, and I did experience such side effects as nausea (but haven't vomited), fatigue, diarrhea, hair thinning (which could also have been due to the general anesthesia I had during my colostomy surgery in March), my onc said I wouldn't lose my hair, but I am definitely seeing clumps of hair coming out in the shower, and on my brush, I will get a wig or scarf if I have too soon. I also got mouth sores for the first time on my 5th treatment.

What I do is go to the infusion center every other Wednesday, get the Avastin, which takes 30 minutes, and then the lucoverin and Irinotecan, which takes 2 1/2 hours, they then give me a 5 minute bolus push (make sure they give you ice chips if they are doing this too you, it cuts down on getting the mouth sores) and then they send me home with the 5fu in a fanny pack for 46 hours, which a home health nurse comes to disconnect me, take my vitals, and just have a good laugh.

Once I was unhooked, I felt vey tired for a few days, you feel it more the day after, but just rest, don't push yourself, and make sure you get good anti-nausea drugs! Emend and dexamethasone worked great for me! also with compazine and zofran, and some good ole maryjane!! you will bounce back and start feeling like yourself after a few days, and just when that happens, BOOM! you have to go for another round of chemo.. shucks!

But I like the attitude you have now, you sound much better, you are going to kick the crap out of this cancer, so please don't give up, just take it and keep going with it, you'll be just fine!! If I can do it, so can you!

The American Cancer Society has a great site to pick out some wigs and scarves at this site here, I just ordered a catalog from them if you'd like to take a look:

www.tlcdirect.org

Hugssss!
~Donna

taraHK · June 2009

I'll just respond to two
I'll just respond to two points: I don't use the cream when they poke the port. Some people do. Up to you. I think it depends on individual pain tolerance and also exact placement of the port (mine is very near the surface).

I had some hair-thinning but never lost all my hair. I bought a wig but never used it. I did eventually cut my hair short, so the thinning was less noticeable -- but I started out with pretty thin hair anyway!

I haven't been on your exact cocktail but many have -- it is certainly a standard treatment these days.

Of course the docs have to warn you about possible side effects but remember everyone is different and not everyone experiences all those side effects.

Here's hoping you sail through with minimal side effects! Kick butt! I like your attitude. I've been thro chemo 4 different times. Not fun, but it's do-able. Just show up -- the nurses do the rest!

Best wishes
Tara

tiny one · June 2009

cream and side effects
I used the cream called emul cream. I think that's what they called it. It's prescription and is a bit expensive. You put it on 1 hour before they are going to access your port. You apply it on very thick and then cover over the area. I used Glad wrap press and seal wrap and put tape all aroung the edges, worked out pretty good. On the side effects you may or may not have some of these side effects. I had 5 FU and had very minimal side effects. I didn't lose my hair, it just thinned a little. I never had mouth sores, no red face. I had fatique but was always able to be active each day. This cancer thing is pretty scary but a lot of us have kicked it in the butt. I am 2 year cancer survivor.

luv3jay · June 2009

I had the Avastin,
I had the Avastin, Oxaliplatin, Leucavorin and 5FU to start. I definitely use the cream about an hour before to numb the skin. My port is just under the skin below my neck area. Around cycle #7 or so, I had an allergic reaction to the Oxy, so they took me off of that. I also am now on Xeloda, which is the pill form of 5FU, so therefore don't take the Leucavorin anymore either. The nausea and mouth sores were the worst for me, along with the neuropathy from the Oxy. I still have pretty bad mouth sores, but hey...I'm NED so I'm not complaining.

Sundanceh · June 2009

Hi, Jennie
I was doing pretty much what you were doing - except no Camptosar, they used Oxaliplatin on me and I was taking Xeloda in pill form with all of that. If they move you to Oxaliplatin, that's the new 3rd generation of chemo drug, replacing Camptosar, which is 2nd generation, have them give you Magnesium Sulfate - this helps with the neuropathy that accompanies the chemo.

My hair thinned but I never lost it. The IV chemo treatments would knock me down for a few days and then I would get back up. I had trouble with all of the cold sensations: unable to touch anything frozen or cold - had to use gloves to get thing out of the fridge etc. Could not run my hands under cool or cold water without pain. And the worst thing was not being able to drink anything cold, because your throat would just feel like it was closing up - had to drink things at room temparature for about 5-7 days after each treatment, but could then resume.

With the Xeloda, you can get more neuropathy there. I had trouble with my feet - over time they became blistered and would peel just horribly and it would hurt to stand or walk for any time or distance. We went to local drug store and found an over the counter product, Bag Balm, which is udder cream, that helped. You slather it on your feet and then put socks on to hold the moisture in and it will help your feet. The doctors never told me any of this of course and I had huge cuts and cracks in my feet, so it took me awhile. Don't wait, as soon as you can start applying and it will go easier.

I'm into my 5th year of fighting this stuff and am looking at 2 spots on the pleura of my lung right now that is a concern. We think we got it in the liver, and now this. I'm sorry you are having to go this and I pray that things will turn for you in a good way. I hope this info helped you some. Craig

Chemo Questions..... Have you did one of these drugs?? Tell me about it

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