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#39870 03-18-2006 04:00 AM
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Kim S. Offline OP
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My father was recently diagnosed with Stage III head and neck cancer of unknown primary. He began treatments this week. He is being given the new drug Erbitux, once a week for eight weeks and will begin agressive radiation next week. I know the drug Erbitux has been around a while but was recently approved for head and neck cancer. Anyone have any experience with this? My father is also trying the Amifostine injections and I pray he can tolerate them as he has a low tolerence for pain, etc.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
#39871 03-18-2006 05:48 AM
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We spoke this week to a new patient (at Hopkins) who is starting treatment - he is also just getting the Erbitux plus radiation -- has stage IV with base of tongue -- getting no other chemo drug. He is also taking amifostine. So far (he is 2-3 weeks into treatment) he's developed the (anticipated) acne on his back -- this apparently is common with Erbitux -- but also has started to develop some mouth sores. A bit early, he is not sure if due to Eribitux or that he's just more sensitive to radiation. He is handling the amifostine the recommended way -- lots of up-front hydration and serious anti-nausea meds 1 1/2 hours before the injections. So far OK.

This is a new protocol -- not sure how the doctors decide who gets eribitux (alone) and who gets it in combination with other chemo drugs (or of they get it all all...) -- will ask our MO when we see her next week.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#39872 03-18-2006 05:58 AM
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Kim S. Offline OP
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Thanks Gail for the information. I would be interested in any additional information that you might come across. They have not perscribed anti-nausea drugs for my Dad. He starts the treatments on Monday. Do you know what the antinausea drug is and if it is administered orally or by IV? I would like to get that for my Dad so he doesn't experience any nauseu. They are giving him Zofran prior to giving him the Erbitux but that is only once a week.
Tx
Kim Sievers(sue1215)


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
#39873 03-18-2006 11:24 AM
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We were given the Medimmune booklet on Amifostine (Ethyol) and they emphasize several things about adminsitering it:

1) adequate hydraton, they recommend drinking 20-32 oz. of liquid (jello counts as a liquid) in the 90 minutes prior to the injections. (My husband found this to be the most difficult part of a difficult drug -- especially as it became harder to swallow.) The hydration is to prevent blood pressure drop, sometimes seen with this drug. The nurse will carefuly monitor BP before and after injections.

2) taking an anti-nausea drug 90 minutes prior to the injections -- (my husband was given Zofran. Compazine did not work for him and I have heard from others it wasn't strong enough.) This is imperative -- the most common reaction I have heard of with amifostine is nausea, sometimes violent.

3) Ethyol to be given by injection -- 500 mg in saline -- usually two separate injections each time -- 30 minutes to 60 minutes before the radiation. This requires good coordination between the oncology nurse and the radiation technicians. Be sure they check that the radiation techs are running on schedule before administering the Ethyol, and you have a half-hour window of effectiveness (per Medimmune).

4) A rash may develop at the site of the injections --Medimmue suggests taking Benedryl but our RO found rubbing hydrocortisone cream immediately into the injection site works as well.

Our radiation onc told us that most of the patients at Hopkins try the amifostine but few make it al the way through, developing a generalized rash or unremitting nausea, at which time the treatments are stopped. They do try to avoid problems by, say, not giving amifostine on chemo days (which they did for my husband) or going to every other day, Apparently even a partial series of treatments can help preserve salivary function.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#39874 03-18-2006 12:45 PM
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About the important hydration with Amifostine: my husband was hydrated every day, prior to the Ethyol being administered, via his IV port. This was a very easy way to get the hydration. He always felt alot better after the hydration. When he wasn't in for treatments over the weekend, I'd continue the hydration through the port. The difference it made in how he felt was remarkable. The radiation nurses would load us up on Fridays with all the needed supplies.

He had radiation for 37 days and Ethyol for every day but the last day . At almost 3 years out, the doctors seem pretty pleased with his mouth moisture level, even though he thinks it is very poor.

As Gail mentioned, the right mix of anti-nausea meds and the right timing is also very important. Pester the doctors about it until they find the right combo.

Best to you and your family,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#39875 03-18-2006 01:05 PM
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My husband Erik is on Erbitux right now. He has received three treatments of it, along with Carboplatnum- (I hope thats right) This drug was still in study when Erik first started, and within the last three weeks, it has become FDA approved. The reactions to Erbitux can vary. So far Erik got a severe case of acne(like) rash all over his face and head. It was very sore, and he was put on some heavy pain meds. After two weeks on it, he had a treatment suspended because his face started to swell, and the radiation mask wouldnt fit. But as horrible as it might sound, the benefits outweigh the side-effects. This drug will cut re-occurance in half. (according to studies) Our doc decided to take the dose down some (it is based on height and weight- Erik is 6'4" and started at 300 pounds) so he was getting a whopping dose. Now he is recieving 75% of the recommended dose, and doesnt seem to be having all the side effects. Our doc really felt that some Erbitux was better than none. I will say that when the rash starts, a cool cloth helps. I kept one in the fridge and kept rotating. Plus the sores tend to ooze so I suggest a dark pillowcase, even a silk one is more comfortable. We also shaved Eriks hair down close to his head, so that the hair didnt pull on the sores. Our doctor started him on some aloe gel (without alcohol) but you should make sure its okay first.
The second week is the worst on Erbitux, then the body seems to adjust some, and the soreness seems better.
Hope this helps
Jennie


Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
#39876 03-18-2006 03:48 PM
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Kim S. Offline OP
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Thank you to all of you for your helpful suggestions. It is definately a balancing act between all the players to get the shots in at the right time and then radiation as soon as possible after the shots. I will pester the docs until we get the right combination of nausea drugs. The oncology nurse didn't seem to think he would have much nausuea but based upon what I've read I think she is wrong. My dad has had alot of dental work in his life so they are concerned about what the dry mouth will do to his teeth, long term. If the amifostine cuts that in half it will be worth it. My Dad does not have a port so we will see how that goes. He is very stubborn.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
#39877 03-18-2006 06:03 PM
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I completed a clinical trial last April of Erbitux in conjunction with docetaxel and general radiation following a modified radical neck dissection in January, 2005. You will find several posts related to my experience. I would absolutely make the same decision were I faced with it today. The side effects directly related to Erbitux were rash and dry, cracking skin on my heels and hands. I did not have amifostine. I hope all will go well for your dad. Tough treatments needed for this cruel disease. Be strong.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
#39878 03-19-2006 09:58 AM
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Kim S. Offline OP
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Thank you Zenda - I read several of your posts and found them very helpful. Also thank goodness for this websight!


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014

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