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davidcpa #88586 01-21-2009 09:47 AM
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Another thing in case nobody told you about is stretching. Have him stretch his mouth open as wide as possible and hold it liek that for a few seconds. This needs to be done several times per day and a few at a time. Sounds simple enough, but without that he could develop some big problems with trismus. Trismus is where you are unable to open your mouth, its not fun, I have it. Seems like there is alot to do and I know it can be overwhelming, but swallowing and stretching are very very important for his future.



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
ChristineB #88602 01-21-2009 04:47 PM
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Re mouth stretching....I found by controlling my yawning I could stretch my mouth open as far as I wanted and still exercise the muscles.


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.
davidcpa #88800 01-24-2009 10:09 AM
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Geri Offline OP
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Hi, I had a question about the anti nausea meds. Did anyone take their meds in pill form before the chemo or only by IV? Richard has his 2nd chemo this Mon. I requested the Emend and the MO ordered it, so we do have that drug, along with Zofran and Ativan. The Emend is listed as $345 for 3 pills! We only paid $35.

Did any of you have a prescription for Decadron to take at home? That drug would be the only other one I would request. Maybe this is overkill, but Richard was so sick the first time that I'm bound and determined to have all the meds available. At least I'll know that we did everything possible to help with the side effects. I only wish the doctor had prescribed all of this the first time. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88825 01-24-2009 02:03 PM
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Geri,
Richard should be getting an infusion of anti-emetics before the chemo.

There should be three bags hanging there. The large one is for glucose infusion, the 2 smaller ones are the chemo and the antiemetic. They should hydrate him first with the glucose, then the anti-emetic and finally the chemo.

According to the manufaturer of Zofran it is only effective 60% of the time and has a limited time span for effectiveness so Richard should have different anti-emetics to use. Zofran is typically good for about 5 days then you need to switch for a while. If he is too ill to keep anything down then there is always Compazine suppositories.

Chemo also does a number on the stomach so industrial strength Pepcid AC (Famatodine) is also necessary. The nausea thing is a tough issue. I never overcame it and they had to shorten my chemo protocol from 3 to 2 Cisplatin infusions.

Keep after the doctors for solutions.

Last edited by Gary; 01-24-2009 02:04 PM.

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)
Gary #88847 01-24-2009 05:06 PM
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Geri,
Bob's chemo regimen:
Emend, taken immmediately before chemo. We were told to bring the Emend with us to tx., but NOT to take it until cleared for chemo. It is expensive and insurance will not pay for another 'scipt if chemo is delayed/cancelled.

Decadron 4 mg on day 2, 3, & 4 of chemo.

Kytril (anti-emetic) and Ativan (anti-nausea and anti-anxiety).

In addition, as Gary states, there were several bags for hydration. IV steroid and IV anti-emetic meds were also administered routinely. Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
travelottie #88866 01-24-2009 08:29 PM
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Geri Offline OP
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Hi, Thanks for the responses. I read on line that Decadron and Emend can interact. Has anyone heard of this? I assumed they were taken together on the first day of chemo. The only thing Richard was sent home with after the first chemo was compazine. I guess I'll have a few questions for the doctors before the second chemo on Mon. Any feedback would be appreciated. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88883 01-24-2009 11:30 PM
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Ive taken Decadron, Emend, Zofran, Ativan, all without problems. They did help, but I was still very sick. So sick from cisplatin that I ended up dehydrated and got a couple hospital stays. My third round of cisplatin was cancelled. Once the nasuea gets away from you, its impossible to control it.

Compazine caused me alot of bad side effects. I couldnt get my nasuea under control, I was so weak and tired but couldnt lay down to rest. The compazine made me pace the floors, it was awful. Please remember, everyone reacts differently to these meds and to chemo. Hope your husband is doing ok.


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
ChristineB #88919 01-25-2009 05:34 PM
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Posts: 126
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Hi, Richard had his blood work done today for the chemo tomorrow. His WBC is down to 2.7 from 4.8 on the 19th. The neutrophils % automated count are 48 compared to 69 on the 19th and 54 on Dec 16th. Are these numbers too low for the chemo tomorrow? His blood work has always looked great before now. I depend on all your feedback so please post with info...thanks, Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88934 01-25-2009 11:40 PM
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It's pretty normal for the numbers to start crashing the further along he is in treatment. If he is like most of us he will be anemic and have low RBC as well at the end of treatment. His immune system will be toast for about 3 months, then it will start to recover. As far as RBC - it takes the body 120 days to replace the RBC. It it gets really bad they may give him Procrit or even a transfusion. The RBC crashes because the blood passing through the carotid gets zapped during RT. White cells are supressed by the ct.

The MO will make the call.

My experience was very similar to ChristineB's, with the excpetion of the Compazine - I had some mild success with that.

Last edited by Gary; 01-25-2009 11:42 PM.

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)
Gary #89199 01-30-2009 08:19 AM
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Posts: 126
Geri Offline OP
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Hi all, Richard made it through chemo on Mon with minor side effects. It's amazing how the right combo of drugs can help. The MO also lowered the dose of cisplatin to 110 instead of 196. His total number they looked at for the WBC count and all the components was 1296 and the threshold is 1200. He was just over the threshold, so they went the lower dose. We were relieved that they didn't postpone the treatment.
Today will be the 18th treatment. He missed two because the machine needed major maintenance. So we will be a little over half way through with two chemos down. Thanks for all your info...Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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