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#38085 01-22-2005 06:51 AM
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As most of you know, I'm a newcomer. I'm still recovering from the PEG placement done this week and will be starting both radiation and chemo next week. All last night, I kept thinking of questions and possible posts, so I'll try to be organized here.

What I've been told is that I'll be getting a 20% dose of Cisplatin for six hours prior to radiation on Tuesdays. They gave us a tour of the chemo infusion area, and I guess I want to know what to expect to make this easier on myself and avoid problems.

The nurse called me in an anti-nausea medication, Prochlorper (generic for Compazine) but I wasn't instructed as to when to take it. The day chemo starts etc.

All thru this process, I kind of like to know what to expect so I can plan for it and make it easier. Our Cancer Center in Denver is new and not many places nearby for hotels or restaurants as it's been built near the outskirts in an industrial area. Since I can still eat pretty good and the PEG tube was put in as a convenience and future measure, I was wondering if it would do me well to pack a cooler full of food for the six hours of duration so my spouse and I can nibble. I may not feel like eating but maybe he will. Do any of you have any chemo snacks to suggest?

I'm trying to be positive. I'm telling my mind not to expect any problems and maybe I can just fly thru this without the nausea. It's the first treatment this coming week and I might not be feeling the effects of it for awhile. Taking good advice from people in this forum, I continue to try to eat as much as possible.

When they gave us a tour of the infusion area they had recliner chairs that looked out over the mountains and a few private rooms where one could lie in a bed. I don't know what the choices are, but would prefer to spend six hours constructively. (bought DVD's for the laptop, got reading material, then again I can always sign online and catch up on email)

From your experiences, I guess I'm asking how this time is spent and if I'm dreaming if I think I can get anything done while parked for six hours. Whether or not I'm going to be too out of it to care on Tuesdays.

Thanks,
Jen

#38086 01-22-2005 07:25 AM
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Jen,

I didn't have chemo, but I did have radiation. In my case, it started 8 weeks after surgery (6 after I left the hospital). "Food" wasn't an option for me, so I drank Nutren 2.0. It's 500 calories in a can the size of Ensure (200 calories). No presecition required, but not usually on the shelf. I ordered it from the pharmacist by the case (24 cans) and got it cheaper than Ensure.

As for snacks, you betcha. Your hubby will need them to keep his head on straight. Maybe others can let you know what you will need.

Another thing, tell hubby that the next few weeks are going to be hard, but you can handle it. (I know you can handle it.) Tell him you may get tired, and sore and cranky. It will help him deal with it.

Ken

P.S. When I started radiation treatments, I found out that I am claustrophobic. Not a good thing given the mask and all. I found out that music got me through the rad sessions. The doc chewed out his staff on one occasion for leaving the radio on. I told him it was necessary and suggested he do some research into audio analgesia. It turns out that "your music" (whatever that is) is like a drug.


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#38087 01-22-2005 08:55 AM
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Thanks Ken, I have been burning music and asking friends for suggestions on what might keep my mind off treatments. My PET scan included Godsmack's "Serenity" and a whole lot of Nirvana, Red Hot Chili Peppers and Paul Simon's "I am a Rock" The music was indeed like a drug. They also allowed me to take a Lorazepam and pain pill before starting.

Unfortunately, I've never been one for bondage and being tied up so the whole bit about being bolted in will probably be similar to having my head and arms strapped. Being an HBO suscriber, I never realized there were people that actually LIKED being tied up out there in the world. Go figure.

One of my longtime friends suggested the music of The Ramones "I Wanna be Sedated"

I'm planning to use both audio and video to get me thru treatments. Ordered all the Simpsons and Southpark on DVD. With Ben Stiller's "Dodgeball" DVD out, I keep laughing as it applies to cancer and the line "IF you can dodge a wrench, you can dodge a ball!!" "If you can dodge traffic, you can dodge a ball!"

At age 43 with all this treatment time on my hands, my claim to fame will probably be the memorization of all Simpsons and Southpark. Geeze.

Hopefully, someone will post on whether or not I should eat before chemo on Cistplatin. All I basically want to know is that if it's a good thing to have something in your stomach or if that's a bad plan because it will magically reappear... lol. I dislike vomiting, especially if I have the unfortunate circumstance of having to throw up in front of strangers.

Guess those people won't be strangers long. Maybe they'll be puking too!

Jen

#38088 01-22-2005 10:19 AM
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Jen,
My husband found that he didn't feel nausea from the chemo infusions until 2 or 3 days after the chemo day. Everyone is different, but it is quite possible you will be able to eat before or even during the infusion. They put my husband's chemo bag on a pole so that he could be mobile. He's kind of like you - wants to use the "down" time. He would wander up to the hospital library and do some research and also use their computers. I think he liked getting away from the oncology unit and they were a little cramped for space (they have since built a brand new large cancer center) so they appreciated him vacating a recliner for someone else.

Anyway, just some thoughts. Good that you are thinking ahead so much and planning ways to get through it all - and get through it you will!!

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#38089 01-22-2005 12:58 PM
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Hi Jen,
My friend had Cisplatin for the first time on Thursday. He sailed through the treatment itself, ate heartily while having it and talked up a storm the entire time. He took all the anti-nausea medication like clockwork and, at least as of today, has only experienced the mildest reaction. He was also sitting next to someone taking his final course of chemo who had only mild reactions too. I'm new to this also so can only share this limited view. But I sure hope it goes well for you. I'd make those six hours as productive as possible!

Lawrence


Co-caregiver for friend with T2N2BMO squamous cell carcinoma of oropharynx.
#38090 01-22-2005 02:10 PM
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Hi Jen, I had Cisplatin for four times, once every week together with radiation. The memory is still fresh with me although it was over 3 years ago I had it. The injection was painless and I managed to go through it reading and listening to music. I had my breakfast as usual before I drove to the hospital ( just 10 minutes drive from my home to the hospital). The nurse injected an anti-nausea medicine prior to Cisplatin. The whole process lasted around 2 hours and I could go to toilet any time I liked. After that, I had lunch with my husband. The appetite was affected only when it was the 3rd and 4th time when the effects of radiation became serious. The nausea effect of cisplatin appeared on the following day. The doctor prescribed some medicine to take before each meal to prevent throwing up.I only vomitted once at the dinner table, which scared my husband and sons.The smell of cooking also made me sick. I am not sure if it is the effect of radiation or chemo since I had both at the same time. I felt fatigue and a loss of direction in life during the treatment. The effect on my mental state was far more serious than my physical one. Everyone may have different response to treatments. To me, I won't say that it was a walk in the park but I am sure you can go through it like everyone else.If you want to know more of my experience, you are welcome to email me.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#38091 01-23-2005 06:33 AM
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Jen, I had ciplatin along with rad, as well. My chemo was every 21 days and they checked me into the hospital to administer it. The first treatment they gave me one of two prescribed anti-nausia drugs and I had a very bad reaction to it. They switched me over to the other one and I had no problems at all. Unfortunately, I don't remember which was which. However, it is different for each of us so if you have troubles with the first choice, try the second. After that issue was resolved, I had no problems at all. At that time I was still eating by mouth and ate the hospital food, which wasn't too bad. I never vomited after the right anit-nausia meds were used. And when I did, I didn't care as I felt so miserable at the time what I looked like to others didn't matter at all. So hang in there, its part of the treatment and something you will forget about once it is over.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#38092 01-24-2005 01:38 PM
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Jen:
As we say in the South, "You have a rough row to hoe", ahead of you but we have all been there. When you feel that you have reached the end of your rope, tie a knot and hang in there.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#38093 01-24-2005 05:46 PM
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I had cisplatin and I reacted poorly to it but that does NOT mean that you will too. Some antiemetics work very well. Zofran is the antiemetic of choice in conjunction with cisplatin. It is only effective for 3-5 days then you must shift to other antiemetics. I used compazine suppositories when I was too sick to keep anything down so it's handy to have some of those in your drug kit. I would be very nervous if they are suggesting compazine as your primary antiemetic. Be sure to ask them for a heating pad for your arm where the IV is - it'll make it a whole lot more comfortable. My experience was that the nausea didn't occur until after the infusion. They recommended having a full stomach and provided snacks and juices. DRINK LOTS OF WATER! Cisplatin is toxic to liver and especially kidneys. Water is important to flush it out. If you are having any ringing or other unusual hearing issues call your oncologist immediately. They will hydrate you thoroughly before they start the cisplatin and afterwards as well. Start drinking the water once you get home. They recommend 2-3 liters (4-6 12oz bottles)/day.

There was an interesting article about cisplatin in CURE magazine http://www.curetoday.com/


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#38094 01-24-2005 08:09 PM
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I had cisplatin once a week during radiation, they'd put in the line and draw blood, then while the test was running I'd go for rad, then do the chemo, which was a combo of several drugs, some for anti nausea, the Cisplatin, plus a LOT of saline to keep my kidneys flushed. Drink LOTS of water, they wanted me to pass about a liter the day of chemo. Lasted about 6-7 hours, I read, slept, ate hospital food ordered down from the cafeteria (which should have made me nauseous all on it's own) I didn't have nausea from the chemo, maybe a little sour stomach the day after, but nothing that would be considered major.

Second time around I had to stop after 4 treatments, started to affect my hearing. When I reported that to the oncologist he stopped treatments, figured I had enough anyway.

Everyone reacts differently, but go ahead and bring snacks, drinks, for sure a book. Just eat mild foods afterward, not so spicy and you should do fine.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#38095 01-25-2005 10:42 AM
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Jen,

If you feel like eating by all means eat all you can whenever you can. Unfortunately, if you pack too many snacks, your husband may gain all the weight you lose! I think it is called the distributive principle of cancer treatment! eek

You will be your guide but all you can eat will only benefit you. Keep hydrated and you will do fine.

When I had chemo, the actually had a library of videos to check out. I watched the news channel and spent most of the time on the phone with work until the latter part of treatment. Don't ask about how the Cisplatin or 5FU affected me and I won't have to lie.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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