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#155899 10-08-2012 09:52 PM
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I am so disappointed at how horrible I feel this early in the game. Serious Reality check in progress. Had lots of hydration today, took an Emben pre-treatment. Had Aloxi and Decadron in drip. I don't know the dosages, but I do feel that my body is now probably in shock as I very rarely take any drugs for any reason. I have taken 2 Tums over the last 5 hours, just ate dry bread all to no avail. At this point I am tempted to go old school and (sorry about this) stick my fingers down my throat just to get this evil Out. Question is, will it help?? Or do I need this stuff inside me so it continues "working" -for what that's worth.
Any ideas glady accepted. Thought I would be able to handle this week, but not too optimistic at this point.
Thanks


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
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Lynn, so sorry you are already not feeling well. Now you can see why I nag everyone so much about nutrition and hydration. Its not easy at all when you feel lousy to take in 2500 calories and 48 oz of water every single day. Its very important that you keep everything in that you can. Havent your doctors given you any anti-nausea meds for at home? If not, get on the phone to your chemo doc first thing in the morning and tell them you are nauseous and need some asap. They can call it into the pharmacy. If you are feeling that bad call them now, someone is always on call. They may be able to get you a prescription for a 24 hour pharmacy. You must take in at least 48 oz of water to flush that chemo out of your body, anything that you throw up must be replaced so keep everything in if at all possible. Dont lose the faith, its not easy to get thru this but you can do it.

Please update your signature with what type chemo and if its weekly or every 3 wks.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I am on Cisplatin. I have scrips filled for decadron, compazine and zofran. No idea which to take. Ate when got home fromm Tx, drinking water. Feel horrible.


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
Joined: Sep 2012
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3week cisplatin


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
Joined: Jun 2007
Posts: 10,507
Likes: 7
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SO you are getting the 3 big doses of cisplatin? I had a hard time with that also. Make sure you speak to your MO tomorrow and tell them how bad you feel. Your next dose should be cut back and dont be surprised to see your third dose eliminated. Ask your doc if its possible to switch you to the weekly method as you are already struggling with this and its not even 24 hours later. My advice is to drink extra water to flush it out of your body as quick as possible. Try zofran and decadron for the nausea. I think they even have strong shots available you can get to help with the nausea (sorry I forget the name of the medicine but its a shot).



PS... I will update your signature for you since you feel so bad. So sorry you are sick!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2010
Posts: 638
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Lynney

so sorry you are feeling so bad. Unfortunately, when the side effects hit, no matter how much you have read and how many people have tried to explain, it is just so unexpected and ...awful. In answer to your question about which drugs to take - all of them (but not all at the same time smile ).

Take your pills in with you and get your doctor or nurse to take you through each of the drugs and explain what they are for and make them write it on a sheet of paper for you. We found that the labels stuck on by the pharmacy were often incorrect for our needs as they were computer generated.

I have spent my entire adult working life working with drugs and the last 10 years with treatments that are even more toxic than chemotherapy (except cisplatin which I think is the most evil thing ever put on this Earth but is also the one thing most likely to cure us in conjunction with radiation) and even I got it all tangled up with everything going on.

Please get someone to write it all down on one piece of paper so you can use it like a checklist. Get them to write the name of the drug (brand name and generic name), what it will help with (eg nausea,) how often you should take it (eg 3 times a day with food - and don't let the doctor write stuff like tds which means three times a day to him but absolutely nothing to you), for how many days and how many each time.

Alex often marvelled how "normal" people managed to get through it all without killing themselves. We had a really BIG piece of paper and Alex used to lay out the pills next to the name on my instructions so that he knew he had them all.

Your idea about sticking your fingers down your throat: The good news is that the cisplatin will keep working as it is already in your system and no where near your stomach. The bad news is that it isn't likely to make you feel better either. As far as the nausea goes, it will begin to feel better after a week and you will feel much better after two. However, DO talk to your doctor because it might be possible to control it better with more or different anti-nausea drugs. It is also possible to take a few things like steroids BEFORE you go for your chemo session as well as during and after.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Thanks to both of you. I took Compazine, hoping it would help me sleep, but it did not. I am afraid of putting even more drugs in my body as I know thats whats making me feel so ill. Can't lie down, position of choice is indian style, hunched over. Ugh. So far the only thing working is the Senekot.
Thanks again, got to go curl up again.


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
Joined: Aug 2012
Posts: 214
Likes: 1
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Hi lynn, I am a week a head of you on the same treatment. Days 2-6 I had a hard time remembering what to take and if I already took them. You will need a plan on meds, paper and pencil works. Just write down what you took and the time. I am tring to do the same.

Remember time moves in hours not weeks. Do what you can to make the next hour better than the last. As hours start to pile up so do days then weeks.



Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Sep 2006
Posts: 8,311
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Lynn,

When was your chemo and what did they give you for nausea?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Mar 2008
Posts: 3,082
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Lyn

The nausea is terrible. I had forgotten just how terrible until now when I'm dryheaving (can't really throw up for the same reasons I can't swallow:extensive radiation damage to epiglottis and cricophrangeal muscles)and vainly trying to retch.

My MO is switching me tomorrow to Ativan, which is usually an anti anxiety drug, but works on nausea when Zofran & Compazine do not.
He did start me off with Zofran & compazine anyway but they just don't work. Ativan or Lorazepam (generic) can not be called into a US pharmacy due to DEA laws and the prescription has to be picked up in person. In my neck of the woods, then you have to show your driver's license also since the DEA has started fining or closing pharmacies even if they service lots of cancer patients for "too many" potential for abuse drug prescriptions. Talk about making me sick.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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