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cysplatin vs erbutux

lyolan1
Posts: 95
Joined: Jul 2009

Hello All, I have an appointment with the oncologist and radiologist for treatment for tonsil cancer. What is the criteria that the docs use to determine if the patient gets erbbitux or cysplatin? What is the difference? Side effects? Alex.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Alex, glad to hear from you. I was wondering how you were progressing.

I know nothing about Erbitux or any of the other chemos. I had low dose Cisplatin and can only tell you how it went for me. Keeping in mind that at the time (almost 2 yr. ago) I was 58, in pretty good condition, somewhat overweight.

I had 7 weeks of IMRT radiation with only one Cisplatin treatment per week. They say the Cisplatin compliments and intensifies the IMRT. With my chemo they gave me a steroid that was to enhance the uptake. They also gave me a timed-release anti-emitic (nausea) that kicked in on day 3 which they said is typically when nausea sets in. They were right on because I never had more nausea than a Compazine or even Pepcid OTC would take care of. Also, I lost very little hair........thinned slightly but not noticeably, grew back immediately once treatments ended.

So, knowing what I went through and how relatively "easy" it was compared to the stories you hear about others, I would have no problem doing Cisplatin again. Hopefully I never have to find out of course.

Keep us posted, keep your chin up...........you can and will do this. Your Fam is counting on you.

JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, How are you doing? Fishing? Swimming? Or just hangin? Mexico sounds very tempting come January in New England. The Doctor said that the cisplatin was tried and true, think of it as a B-52 carpet bombing campaign against cancer. It is not very specific or targeted. Erbitux is a genetically modified mouse gene that prevents the cancer from healing itself from the radiation treatments. The only problem is that there is not that much history to draw on, it is fairly new. I was wondering if you heard anything. Alex. I will be away for the weekend at a wedding for one of my nieces in upstate New York. talk to you when I get back.

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victor53
Posts: 97
Joined: Apr 2008

i got 6 weeks induction chemo once a week for 6 weeks Taxol and Carboplatin and Erbitux.
Then i got Cisplatin with my radiation it got it everyday on weeks 1,4 and 7 i havent read of anyone else getting it that way.

The Erbitux rash sucked but was bearable but ugly.
I had some neurapathy numb fingers and bottom of feet thats gotten alot better still just a little noticable.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

But others here, in addition to Victor53, will probably share their experience with that specific chemo.

Life in Mexico is OK but it is hotter than heck.........too hot to fish. Been working on my boat (in the picture) to get the PM up to date for Yellow Tail season which will start early Oct.

SeaYa..................JK

lyolan1
Posts: 95
Joined: Jul 2009

Hi JK, How have you been? I hope it is all good. I just met with the radiologist. It seems like everybody just keeps pushing the bad news down the line. The radiologist informed me that the treatments would be on the left and the right side of my neck and that both salivary glands would be rendered useless because of the amount and strength of the radiation. the end result being no saliva to help fight tooth decay, end up using bioteen and flouride trays for the rest of my life. Dry mouth and having to carry a water bottle for the rest of tmy life. Evidently, the saliva gland never re-covers or reguvenates. Now I am starting to get pissed! Did you have radiation on both sides of your neck? Did you loose both salivary glands?How basd is the dry mouth? How are your teeth? Alex.

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

Alex
I am sure no two are alike, but I finished 32 radiation treatments and 7 chemo treatments on June 5. Surgery removed half of my pallet and upper right jaw, part of my right cheek bone, alot of muscle tissue in my cheek, the lymph gland on the right side of my neck and 13 small lumps around the lymph gland. The radiation was directed at my right sinus cavity, right cheek bone and jaws and the right side of my neck.
FORTUNATELY, I still have some saliva and it has seemed to get a bit better since completing treatment.
The dry mouth can be a pain, but Biotine tooth paste and mouthwash DO help alot and combined with carrying a water bottle makes living more bearable than the alternative.
Both my Dr's and my Dentist have recommended dental cleanings and floride treatments every six months.
I would certainly agree with you, things can be frustrating with cancer treatments, but try to stay positive and hopeful.
If I can answer any questions or offer any support, please let me know.
John

lyolan1
Posts: 95
Joined: Jul 2009

Hi John, I have decided to let the drs do their job and me to stay focused on staying healthy. I have to accept what my condition is after the rads are done and find a way to live with the long term health problems, if any. This journey has to be taken. Alex.

lamata
Posts: 4
Joined: Sep 2009

Hi Alex.
Lori here. I am told my saliva will never return. Chewing sour gum helps a lot. Also as stated by another survivor, Bioteen works wonders. You may also experience very thick mucos from the radiation and no saliva does not help that. I drink about 8 - 10 bottles of water a day. I get tongue ulsers from dry mouth over night. Salty foods make it worse. There is an RX out there called Saligen ( sp?) It can take months to see results. I just started taking it. Plan on washing down each bite of food with a liquid as I learned the hard way that many foods turn to a yucky dry soft cement type substance and is difficult if not impossible to swallow with washing it down. Yes, dental care is ,most important with no saliva. A Humidifier with face mask helps a lot at night to keep the mucos thinned. I feel for you Alex! I finished my treatment in May and still feel many of the effects of it. It definately is no fun !
Kisses for your heart and dreams for your spirit,
Lori

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Alex, you might ask about something called amifostine (sp?). While back in 05-06 the docs weren't overly excited about how well it work, there was some research that indicated it MIGHT save salivary glands exposed to radiation. The deal then was that I had to get two shots (expensive ones: about $400 a pop, so make sure if you do them your insurance covers them), two shots about a half hour prior to going in to rads. So, two shots a day for seven weeks.

It is hard to say that they were what did it, but I do have salivary gland action, following replacement of half of my tongue, a radical neck dissection, and the 33 of a scheduled 35 rad treatments. When something DOESN'T work, it's easy to say that, you know. If it does, we are left sometimes wondering if that was what really did the trick.

Anyway, since you don't start until 9/2, as I recall, you might at least explore the option with Rad Man.

Take care,

Joe

TIM_WWJD
Posts: 38
Joined: Jan 2009

Alex
I had stage four tonsil cancer and prior to my radiation treatments I was given the option of surgery to remove the tumor and tissue or an intense chemo to reduce it. I went the way of the chemo because I was worried about the surgery but that is something that each person needs to decide with their doctor. I also had IMTR radiation and chemo during that but they were able to save one side of my saliva glands. By the way I tried the Amophostine (sp?) but it is under another name, it made me sick after a few weeks so I had to stop. My big question is did you get more than one opinion? My local doctor even recomended that I do that so I had more information to work with. I would sugest that if at all possible talk to another doctor. You need to be comfortable with who you choose because once you start you need to listen to them and be able to ask tough questions and expect answers. I won't sugar coat it there is a rough road ahead either way but as you can see from this site there are plenty of people who have made it fine. Remember to ask questions and get all the information you can. Good luck and God bless.
Tim

lyolan1
Posts: 95
Joined: Jul 2009

Hi Joe, Thanks for getting back to me, I am glad you are done and feeling better. I spoke with the head medical oncologist at Mass General regarding the Amiphostine. He said that there is no evidence that the drug works or is beneficial in any way. He was fairly negative on the use of it. I have heard from alot of people on the subject. Some seem to be okay after the rads, others not as much. At the end of the day, I have to beat the cancer first, then hope for the best on the long term affects. I have reached the point where I have to accept whatever comes my way. I am not in control of what happens from 9/2-10/22. All my energy has to be focused on taking care of myself and getting through the ordeal. I hope that I will be feeling better by /thanksgiving. Alex.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey Alex,

I will be thinking about you through this. My husband just started his fifth week and actually he is doing ok. So far he has lost 11 lbs. I know the last three weeks will be the hardest but so far it's not too bad. He is not eating any food by mouth, he does drink ensure and water and ginger ale. The PEG tube really has helped even though he hates it. We are so close to the end. I know you will be fine too. Our DRs said the same thing about amiphostine. We have our last chemo tomorrow. whew! I can finally see the end. Once Treatment starts you will be glad that things are moving along.

Peace be with you!
Donna

lyolan1
Posts: 95
Joined: Jul 2009

Hi Donna, Long time no hear. I was suppossed to start treatment last week. However, it was the last week of summer, vacations, and a general 3-ring circus at my treatment site. I was supposed to get the g-tube monday, eurbitux tuesday, rads on wednesday. Turns out that Dana Farber wants the g-tube before treatments. However the DR. was on vacation, therefore no treatments. The ball is definitely in motion. I will have the tube on thursday and treatments will start next week. I had a great weekend with the wife and kids and got some work lined up for the crew. I will let you know how things go. Alex.

diane l w
Posts: 5
Joined: Nov 2009

I am new on your message board and have stage 4 tonsil cancer had the tonsil removed and 26 lymph nodes of which two were cancer now start my chemo -erbitux on monday for 6 weeks
and radiation every day for 7 weeks sound familar to everyone? i have been so nervous that i have been talking to the nurse who handles people like me that cant take this in my mind
so i have started lexapro.. i am such a wimp that i could never even get my ears pierced and i am wondering how i can get thru this with all the horror storys i am ready
please keep me in your prayers and help me get thru this
diane w from wisconsin
at rlwcpa@execpc.com

Bonj
Posts: 17
Joined: Aug 2009

Hi Alex,

My husband has received both.

When he was on Cysplatin he was on a once a month treatment, in parallel with radiation treatments. He had typical side affects (tired, metal taste, etc) but he did not lose much of his hair. Cysplatin also affected his hearing and he has noticeably worse hearing in one of his ears, and this is a known side affect of the drug.

With the Erb, he received it weekly. It causes skin irriation, which includes mouth sores (on the tongue as well), irritated his eyes, overall skin rash, and numbness and tingling in his finger tips and toes after a long period of time receiving it. Erb is also used for colon cancers and my understanding is that the way that it works it kind of clings on to the tumor and breaks it down that way. When my husband went through another session of radiation treatments he was on the Erb that second time around, so both seem to work well with radiation therapy.

I'm not really certain as to how doctors decide which one patients receive.

Best of Luck to you!
Jess

lyolan1
Posts: 95
Joined: Jul 2009

Hi Jess, Thanks for getting back in touch. I decided to go with the Erbitux because there are no known long term side efects with the Erbitux. Where as the Cisplatin can cause problems with kidneys and hearing. I noticed that you are new to the boards. Welcome. I hope that things are going well for you and your spouse. I start treatments next week. G-tube this Thursday. Alex.

Bonj
Posts: 17
Joined: Aug 2009

Alex,

Yes, Cisplatin definitely causes hearing loss. My husband had some hearing problems before, and they are definitely worse, but still manageable.

Best of luck to you with the Erbitux!

Tanager75
Posts: 86
Joined: Aug 2009

I did the cisplatin with 7 weeks radiation. Got done 3 weeks ago with the radiation. I had a baseline hearing test done before starting and after the chemo had significant hearing loss. I may need to wear hearing aids because it impacted my conversational hearing. I'm waiting now for the outcome of the treatment which they use a PET Scan at 90 days post. Some days i feel faily well others i can tell the radiation is still working. I had tonsil on the left side and it had gone into 2 lymp nodes (squamus (?) cell). My saliva glands are not great but seem to be improving. Food is terrible and I'm glad i have the feeding tube for hydration and food. The cisplatin dehydrated me terribly and I needed to have iv hydration after each chemo a couple times. Food does not taste good yet but I'm hoping for a change there. This is a great web site and i sure appreciate and learn from all the people who post here. Thanks to you all and hope your treatment goes well.

peace

mark

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey Mark,

Glad you are done with your treatment. My husband is in his last week of radiation. He had three cisplatin treatments and I have noticed the TV is louder. He had tumor on right side of tonsil with two lymphnodes. He is so ready to get the PEG out, but still uses it some. He has managed to eat/drink by mouth through this whole thing and uses the PEG only twice a day. It has been a blessing though. So far he has lost only 15lbs. I heard Zinc can help restore taste buds, I am gonna ask the DR. Take care!

Donna

lyolan1
Posts: 95
Joined: Jul 2009

Hi Mark, I really am happy that I went with the Erbitux. I had my first Erb treatment Friday. I felt alittle weird for a couple of days. All in all, pretty good. I also had my first rad today. Going to the Pats vs Bills with my son tonight. Did you need the peg tube or could you swallow all the way through rads? I am happy for you because you are done. Good luck on the PET scan. Alex.

Tanager75
Posts: 86
Joined: Aug 2009

I had what they call a PEG tube or feeding tube. I got it at the start of treatment and lots of problems with it. They say my case is not the rule. My first one was to tight and the second burst so it fell out, my third was a temp and my fourth is still in place. I use it still 95 percent of the time as food and water does not taste good. I drink as much as I can and experiment with food but rely on the feeding tube. I don't like it but it has been a life saver. I have lost a lot of weight and due to the rad and chemo which left me sick and unable to do much, a lot of the weight was muscle. I trying to walk now and get back into some kind of shape and looking foreward to going back t work. I was able to swallow all the way through and took all meds this way. Hope the game was fun. Take care.

Peace,

mark

lamata
Posts: 4
Joined: Sep 2009

I had a feeding tube but never did use it. I lived on Ensure and Carnation instant Breakfast for nearly months. Right at the end of Rad, my PEG got infected and had to be removed. Swallo as much as you can to keep those muscles active and strong. Good advise given to me by one of my many doctors.

diane l w
Posts: 5
Joined: Nov 2009

please see my new posting, i start chemo on monday the 23rd erbitux.. how has that been for everyone? i am a nervous wreck and think of nothing else but this treatment of
chemo and radiation.. any advise anyone can give me tonsil cancer and 2 lymph nodes
had cancer.. had pet and ct scan and the cancer did not spread and did not go on the other side.. any advise
diane w at rlwcpa@execpc.com

pk's picture
pk
Posts: 192
Joined: Aug 2009

My husband went thru the same treatment you are about to undergo. He 35 rads with Erbitux once a week during radiation. He is now 7 weeks post rads and doing quite well. Erbitux caused a rash, radiation caused pain, dry mouth, neck sunburn. 2 weeks post rads was almost more difficult than the actual 7 weeks of rad. He had a feeding tube placed prior to starting treatment. This was the best thing ever. Once you get going you will need this ad eating just becomes toooooo painful. He used his after week 2 of rads and 2 weeks post rads. He no longer has the tube and is eating again. Not that it tastes so great and sometimes it is a bit painful. This is a tough treatment, but you can do it. Ask tons of questions. The people on this board are awesome and knowlegeable. PK

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Mark (TANAGER),

Can't recall if you were part of other posts re Glutamine powder but it is worth looking into. I actually couldn't drink water because it hurt too much but with a teaspoon of Glutamine powder added, I could drink the water. No taste at all. It is also good to help save muscle tissue from wasting away and has a catabolic effect.

Best you google it and read some of the hundreds of hits you will get but go well down the list as most earlier hits are paid sales pitches but all you will read is GOOD ! I was put on it by my Naturopath to help my mouth heal (Mucositis) but it has many other benefits and no negatives.

Sorry if this is a repeat of an earlier post but your note caught my attention. I also didn't realize you had so much trouble with your PEG. just the kind of complication you DON'T need when you going through enough already.

Hope all is well now.

REgds
Scambuster

lamata
Posts: 4
Joined: Sep 2009

Lori here. I had no hearing loss, did lose all of my body hair, it is all back now. No other side effcts other than the nausa.

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