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Geri #88141 01-15-2009 07:23 PM
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I didn't notice any constipation from the Zofran, but
for me the Nutren 2.0 for the PEG feedings was constipating so I was also dumping in cup a day of plum juice which might have made the difference.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #88142 01-15-2009 07:33 PM
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I don't recall any side effects from the Emend. And unlike Don, I had trouble with the 'canned nutrition' causing diarrhea, not constipation.


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 #88146 01-15-2009 07:59 PM
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On my chemo day, I would get an infusion of Aloxi for nausea before they gave me my chemo. It supposively lasts for three days (I think). I had Zofran and Phenergan at home and I kept up with those religiously. I only had trouble with nausea at the beginning, before I started on the Aloxi.

And I'm with Margaret. Those nutrition drinks clean you out! I had trouble from day 1 in the hospital. At first my stomach wouldn't digest the stuff and they could bolus out the same amounts of liquid that they had put in, several hours later. And then once my stomach decided to start moving the food, it moved at lightning speed!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


sobradley #88147 01-15-2009 08:18 PM
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How soon did all of you start to get a sore throat? Richard's throat is sore at the roof of the mouth at the back. He said it feels raw. He did have a slight temperature last night that went away and the RO thinks it's a bit early for throat pain. She thinks it might be a cold virus and will check him tomorrow. I've had a bit of a scratchy throat myself. Nothing has progressed the way we thought it would, so he is probably just getting sore sooner.


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 #88149 01-15-2009 08:25 PM
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I did not start getting a sore throat until about half way into tx. My mouth however was sore after a couple of weeks. I was not able to drink anything with chocolate at first and then pretty much anything at all besides water.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #88152 01-15-2009 08:57 PM
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I didn't start having symptoms until well into my 5th week - except pink skin, but as I'm sure you have already found out, anything is possible because we are all affected differently. Towards the end of it all, I couldn't put anything in my mouth, including water because the mucositis was so bad. It felt like a million razor blades were in my mouth - but I kicked up the pain meds and made it through!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


sobradley #88159 01-16-2009 01:56 AM
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Love those pain meds because they can turn an ordeal into an inconvenience -- Of course, there're prices to pay in the form of constipation (they're giving me plenty of stool softener) and getting off the stuf (intend to taper down much better this time around!).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #88166 01-16-2009 05:09 AM
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Geri,
The sore throat and mouth sores are more often caused by the chemo than the radiation (especially early in treatment - the radiation side effect problems typically occur later in treatment). I was about 3 weeks into it when it started. Some here have reported a sore throat in the first week.

I just got caught up on the threads and had a few other comments:

They have fiddled quite a bit with treatment protocols. The NCCN Oncology Practice Guidelines, in 2003, when I started treatment were Cisplatin X3, every three weeks with the first application starting on the first day of radiation. They had very good (efficacious) results from this treatment protocol (although the toxicity from the Cisplatin was pretty brutal). Then they started experimenting with weekly, smaller doses of Cisplatin and also with hyperfractional RT treatments, in other words twice a day instead of once a day, but in smaller doses. Initial reports have been favorable for the new protocol and more institutions are using it. It's not so much that the odds of beating the cancer are improved as much as the side effects may be mitigated a little. But as has often been stated, we all respond differently to treatment.

I was scheduled for X3 Cisplatin ct but reacted so poorly (or conversely, so well) after the second one that they decided not to go with #3. I also read somewhere that 2X Cisplatin was as effective as X3. It obviously worked for me as I am almost 6 years cancer free now. Most MO's are adamant about completing all of the prescribed treatment protocols however. There is strong evidence to support that persons not completing their treatment prototcol have worse outcomes. Conversely, the radiation IS the primary treatment modality and the Cisplatin is an adjunct to it. It has been reported that tha addition of Cisplatin can improve survival odds and additional 13-15% over radiation alone.

Constipation: I have no experience with Emend but I don't believe that the anti-emetics will cause it. It's the narcotics that are the main culprit for that. Staying well hydrated is key for constipation management as well as Senekot with stool softeners and also speak with your nutritionist. Preparation H will also help. It can be managed - usually better. Honestly it was one of my worst experiences in the whole tratment process. It can also cause nausea and vomiting when homeostatis is stopped. It is important to get a handle on it. I spent more time curled up in a fetal position on the bathroom floor as a result of the constipation than any other reason.

Watch that temperature - if if exceeds 100.5 degrees call your doctor or go to the ER immediately.

Another tip for you, if he is dehydrated, make an appointment and get rehydrated in the infusion unit rather than going to the ER. It's twice as fast and twice as comfortable.

Also, Ciplatin does a number on the stomach so he should also be taking Famatodine (Pepcid AC).

All of this is still a simplistic way of looking at and describing the treatment protocols as cancer is a complex and multidimensional disease.


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)
Geri #88171 01-16-2009 06:27 AM
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My 2nd Cis even with the Emends was not as "pleasant" as the first and you also need to keep in mind that he will have had 15 rad Tx's to go along with this so hope for the best but don't be crushed if he still gets sick. It was around this time that things slowly started to go south for me. Also make sure he pays attention to a slight ringing or hummmm or buzzing "noise" in one or both of his ears. That means TROUBLE with Cisplatin and you should let his chemo doc know right away as they may want to switch him to Carboplatin for #3.


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 #88182 01-16-2009 07:50 AM
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Many thanks everyone for all your responses. Richard's sore throat is better this morning, so the RO was probably right about it being a virus. Especially with my scratchy throat. Anyway, it's a relief and hopefully we'll have a good day today. Gary, how do they determine if you get the 3rd dose of Cisplatin? At radiation, they take x-rays frequently and the RO approves before the treatment. I'll ask when we go in today for more info. David, what does (70gy) mean? The RO said that Richard was getting 1600? and the limit was 7000? I'll ask today when we go in.

One nurse said that they will probably only change treatment plans if the blood work doesn't look good. Another nurse said that they might not need to do the third, depending on the progress of the radiation. I might of misunderstood what she said with all the stress of the 1st chemo treatment.

Can they tell if the tumor has shrunk during the treatments or do you go through it all and wait until you can be tested again? I feel like I'm going around in circles with my information. It's like I'll ask something , get some answers, ask more questions, then forget what was said. If you can think of any questions for me to ask the RO today, please post.
Richard calls me his guardian angel( a very tired one) and we have become so much closer through this ordeal. 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
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