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Geri #87317 01-05-2009 10:20 AM
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Geri,

I only rec'd Cis as my Chemo but I also rec'd fluids and anti nausea meds thru the IV at the same time. I'm sure if he was going to receive any other chemo they would have told you.

I did also have to take an anti nausea med (I believe Amend) one tablet for 3 days beginning the day of chemo, before I arrived, and for the next 2 days. Everything was fine the first bag but the 2nd and 3rd knocked me for a loop but by that time I also had many rad Tx's under my belt so it's hard to say if it was just the chemo or the chemo and everything else going bad.

I am still surprised they are going with the 3 big bags rather than the smaller weekly doses so many are getting now. Watch out for the ringing in the ears and tell them immediately if it happens. I would also want to get my hearing tested BEFORE Tx starts so that you have a baseline to measure hearing post Tx against.


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 #87323 01-05-2009 11:14 AM
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Geri, I hope the day went relatively well for you and Richard. It is a relief to get started with treatment.

My friend, an OB-GYN, did have conventional chemo for breast cancer and has done well for 3 years now.

My husband, Bob, received induction chemo due to one large lymph node. Dana-Faber team felt his case was borderline regarding the need for induction because primary was low volume. He decided with local oncologist and Dana-Faber input to go for most aggressive tx. He has always been very healthy (no coronary,kidney disease, etc., so they thought he could withstand the tx. Was it all necessary - don't know...


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 #87343 01-05-2009 06:45 PM
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Hi, Well, we made it through the first day. Deb, I had the same reaction you did and really had to keep it together at first. Seeing all those people sitting in the chemo room and realizing that Richard would be one of them was very difficult. Everything went smoothly and everyone there was very helpful. We actually felt fortunate that he is only getting cisplatin because many patients are given several chemo drugs with numerous side-effects. We went straight to radiation which went pretty quickly.
As soon as we got home Richard started his anti-nausea meds, rinsed with baking soda/salt water and applied aloe vera to the neck plus taking some high quality aloe vera internally. He will start using the biotene mouth products today or tomorrow. Maybe this is a bit early, but we want to get used to the routine.
I'm still confused about why some people have different treatment protocols when the diagnosis seems similar. The chemo seems to really vary.
Thanks to everyone who has posted with info. I'd love to hear more from all of you even though you've probably repeated yourselves numerous times.... 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 #87358 01-05-2009 09:46 PM
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Geri,

I think the different treatment protocols are really based on the finer points of the pathology and while many of us have SCC on the mobile tongue, or the base of the tongue, the extent of the lymph node involvement is really what informs the docs as far as chemotherapy and radiation. For example, on initial exam, I appeared to have only one involved lymph node - making me a Stage III patient. But during my neck dissection, two additional nodes tested positive, pushing me into Stage IV and Erbitux was added to my treatment plan along with the maximum amount of radiation they could give me.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
margaret_in_ma #87370 01-06-2009 07:41 AM
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OK Geri,

I know there are guidelines for treatment protocols depending on staging as Margaret mentioned. But the treatments still vary depending on the facility, doc, etc. It drove me crazy trying to make a decision as my research went several directions. Ultimately, I had to trust Bill's doctor to do the right thing.

Major hurtle...getting thru that first day. Now you can just go into "auto mode" 'cause that is what the next few weeks will require. Unless the chemo throws him a curve in the next day or two, Richard should be relatively OK for a week or two. I know I kept asking when the bad side effects would start showing because Bill was still eating and working during that time. The throat pain, fatigue, and crazily enough, hiccups came on suddenly in week three and Bill was on supplement thru his PEG exclusively by the middle of that week. I found myself just focusing on taking care of him...making sure he was getting enough calories and fluids (and swallowing a bottle of Gatorade Rain) each day. So we just went on routine...PEG feeding + water, radiation treatment, meds, feeding, feeding, radiation treatment (he was getting 2 a day), feeding, meds...you get the picture....one day at a time...checking off the calendar. It became a sort of a blur so I charted his food and water intake each day striving to reach the goal.

One of the main symptoms...fatigue masked what turned out to be emergent...at week 6, Bill started sleeping excessively. I had to wake him to go to treatment and to feed, but otherwise he was asleep. This went on for a day and 1/2 before I realized he was running a fever severe enough to do what we had been instructed to do...call the doctor. Please be aware of this and check Richard's temp if anything seems "off." Bill's blood counts were very low the last couple of weeks and he had developed an infection that required hospitalization for a few days. After he got out and finished his last 3 treatments, he hit the ground running and did not have the after effects that so many here have...I'm not sure what to attribute that to...his toughness, the extra hydration he received in the hospital, the antibiotics that cured the unknown infection...???? He was off the pain meds the next week and started eating almost immediately...maybe divine intervention but welcomed.

Hope this gives you some hope...you will get to the end of this.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
debandbill #87371 01-06-2009 08:36 AM
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I really can't believe this is happening so soon. Even with the compazine, Richard has thrown-up a few times since midnight. I have a call into the doctor for a stronger med and I'l talk to them when they get in this morning. This seems way to early to start with these symptoms and then have to get to the rad appt today. I'm very nervous about this fast reaction. How on earth will we make it through 7wks of this? I'm hoping another anti-nausea med will work. Yesterday, the nurses said to call if he vomited and they would give him another drug. Will they change the chemo because of this quick reaction? I'll keep you posted and if anyone has any feedback, please post... 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 #87372 01-06-2009 09:16 AM
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Geri,

The docs have lots and lots of anti-nausea drugs to use. Actually, I'm surprised they even bothered with compazine, a drug which has never worked for me - not even a little bit.

Cisplatin is an incredibly toxic drug and they do expect a reaction. I sincerely doubt they'll change his treatment because of vomiting.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
margaret_in_ma #87391 01-06-2009 03:05 PM
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They needed to give him Emends. It's a one a day, three day treatment. Zofran is another he should ask about.

Regardless he must go thru with the radiation as this is a temporary adverse reaction to the chemo, not the rad and he can't afford breaks in his rad.


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 #87394 01-06-2009 03:28 PM
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I was taking Zofran and another one (forgot name), before and after theCisplatin. I never had an issue but everyone reacts differantly. They normally have an assortment of meds to prevent vomiting. I also received some meds in the IV after the chemo bag. Be sure to let them know ASDAP, they want the patient to be as strong as possible for rads...rad is the key. Hopefully this issue will pass quickly.


Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
bill in nc #87400 01-06-2009 04:14 PM
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Sorry to hear your husband is experiencing reactions to the chemo already. Try as best as you can to get the anti nasuea meds and fluids in him. Good thing he has the peg tube. Just remember for everything he throws up he needs to put back in, so keep trying. Unfortunately vomiting is a side effect to chemo and the docs probably will not change the chemo. Hope he feels better tomorrow.


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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