#77600 07-27-2008 07:54 PM | Joined: May 2008 Posts: 43 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2008 Posts: 43 | i will be getting cisplatin everyday weeks 1,4 and 7 i will get radiation everyday mon thru friday and twice on friday
Ive got glutamine powder i got super acidophilus i got aquafor i got a baby soft toothbrush( do you know they invented the toothbrush up in maine where i used to live if was invented anywhere else it would have been called a teethbrush)
things ive read and written in my notes that i think i need biotene products carphosol? suction machine therabite thingy
anything i can do to prepare or stay ahead of mouth sores and throat and neck problems?
Ive got peg tube in and plan to keep up my water and swollowing and 2000 cal a day. Thank you all
Tonsil into base of tongue 3to4cm tumor. Giant lemon sized 9cm lymphnode. Squamos cell carcinoma April 5 diagnosed. June 5 started treatment. Cetuximab Carboplatin Paclitaxel once a week for 6 weeks.Then 7 weeks of radiation plus chemo cisplatin then 4 weeks rest then neck disection was Nov 7 2008 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Victor:
It looks like you have done a great job at preparing for treatment. For chemo days maybe take a book if they dont have tv's at your treatment center.
Did you arrange for a driver? If not the American Cancer Society can help you with that. They can also help with the cost of prescription meds. Ask for magic mouthwash for when your mouth gets sore. Have you gotten the anti-nasuea meds? Thats important to take them before you get sick and cant keep things down. But everyone goes thru this a little differently.
As far as calories go, might want to change your plan and go for 3000 per day. Your body needs that much to heal and maintain weight thru treatment. Keep up with the fluids too, I was told minimum 48 oz. water per day, preferrably more. Ask your doctor or nutritionist.
If friends and family have asked you what they can do, make sure you take them up on their offers. Its a rough road but you can do it. Keep posting and asking questions, lots of people will help you thru this. Best of luck tomorrow.
ChristineSCC 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 | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Victor,
There are a lot of items on you list that I didn't even know about. So I have been "googling" them.
Today is my 10th rad and my mouth is still OK, but scummy feeling and starting to get a few patches of little bumps along the bottom inter gums.
I am eating and drinking just fine. Water has a bit of a metallic taste.
At night I am waking up about every hour due to my mouth being so dry and sipping ice water, but during the day saliva seem OK, perhaps a little thicker.
I have become a gum chewer and that really helps and it also keeps down the scummy feeling. I image it is also good jaw exercise.
I have been following Margret since she is a couple weeks ahead of me and I see she is now having to rely on her PEG. If I can do as well I have a couple more weeks until then.
I am also hoping to hear what to expect and do once the mouth sores, mucous and pain starts. Just this week the cancer center did have me switch to a soft toothbrush, but they seem to keep just one step a head of things, sparing the details. Probably not wanting to scare me to death.
Good luck with your first Rad
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
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Victor, are you getting cisplatin daily? If so they are keeping you very busy; would you mind confirming this? Do you have a PEG? Nutrition is going to be an issue especially later on. I did not have a therabite device. It would however be a good idea to start doing Jaw exercises. This is one of the things nobody on my team ever mentioned.
Don, you should have a bit more time before it gets worse. Mouth sores will GENERALLY get worse and eating then drinking and finally even speaking will be "uncomfortable".
One thing I was using in my last weeks of rads was viscous lidocaine. you can eved dilute it a little if needed. This gives you short term relief for speaking/drinking etc. Even if you use the PEG you should continue to drink normally told otherwise. Lidocaine allowed me to cut down on the oxycodone/morphine which was good thing because they also cause problems (constipation etc). In the end I used about 1/3 of the oxycodone/morphine. The point is to use as much as you really need. You also might want to use a stool softener.
M
Last edited by Markus; 07-29-2008 12:12 PM.
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have to agree on the stool softener. LOL The constipation is worse than
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Man I always hit the wrong keys. LOL . The constipation is the one of the worst things I experienced. It will probably be a few days before you experience any after affects, but they will come. It's nothing you can't handle and live with. JUst do what you have to and you will be fine. Don't forget to take a book or crossord puzzles to Chemo. Good Luck.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Markus, Not wanting to hijack Victor's thread, but do you happen to recall at about what rad you started needing the viscous lidocaine and then again for the oxycodone/morphine?
Last, but not least, does the constipation start once we are predominately relying on the PEG and feeding formula (since I haven't had this problem yet). I was actually wondering if I would poop at all once I was relying on the liquid diet!
thanks
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
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Victor:
Hope today went ok for you.
Don:
Constipation is not caused just by the liquid diet. There are alot of different formulas out there. Its the pain meds that cause it. The liquid diet can cause diarhea. Its a good idea to get some fiber like benefiber to mix in water to flush the tube.
Remember everyone gets thru this differently. I was on strictly tube feedings at 2 weeks into treatment, on the pain patches about the same time and using the magic mouthwash too. But, I had mouth sores before I ever started chemo/radiation.
ChristineSCC 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 | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Don,
Week four seems to be the time the walls start caving in. And it happens pretty quickly. Bill was seemingly doing OK on the Friday of Week 3, eating and not having a lot of pain but by Monday or Tuesday of Week four he could not eat by mouth any more and needed pain meds. He remained solely on the PEG feedings, water supplements and meds until one week post treatment. I did put a small bottle of Gatorade Rain in front of him each day and asked that he sip that by mouth to keep him swallowing...I could monitor how much he got down just by looking at the bottle. The rest...supplement and water, I charted to make sure he got the required calories each day and I attribute that to his quick recovery post treatment.
The pain meds are the major culprit regarding being constipated. Even with a liguid diet of mainly supplements...it is still a problem. Bill's MO suggested good ole Milk of Magnesia to clear the constipation and then stool softeners to maintain and that worked very well.
Hope this helps, 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
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Don, Victor this may apply for you both. The lidocaine: mainly the last two weeks of radiation. I used it when I wanted to eat/drink or speak, unfortunately the effect does not last long. I am a bit hazy on the details with the morphine But this was the last 2 (3) weeks of the rads .... and then for 10 days afterwards. However, I did start with it gradually and also tapered it off. I never got up to the prescribed dose. As Deb says the pain meds cause constipation. That said, take as much drugs as needed, there is no point suffering needlessly. I had problems first after about 3.5 weeks. Counting from my second IMRT start. (see signature). However, I had a yeast infection, once this was treated things were ok again for one more week. That is something to watch for as well. The liquid diet compacts into "bricks" amazingly well I did not think this possible either. This is something easy to avoid once you know that it may happen. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Deb, Thanks, I made some notes on my calendar ... week four!!!! Tomorrow starts my third week, so I better eat eat eat while I can.
Saw my RO today and he said my mouth and throat were really holding up well (surprised me) so maybe I will get an extra day of two.
Still hoping I will wake up and this will all have been a bad dream (nightmare)!
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
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Markus Thanks
Also, what was your daily regiment in clearing and cleaning your mouth?
My Periodontist said my mouth might be too sore to use the fluoride teeth molds and if so to just brush or rub the fluoride on... any comments?
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
| | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2008 Posts: 67 | Don, Regarding oral care...I stopped using the flouride trays about 3 weeks in to treatment because my mouth started getting sore. In addition, I continued flossing and I used Biotene toothpaste with my electric toothbrush every night. Also, I used the Biotene toothpaste with a regular brush after every meal throughout the day. Periodic and frequent rinses with the saline/baking soda mixture and separate rinses with Biotene mouthwash were required in order to get some comfort. I also used the "Stanford Mouth Wash" regularly whenever there was any sign of a sore or discomfort in my mouth. Despite not feeling well I made myself stick to a regular routine and I am convinced it helped my mouth stay free of sores and contributed to a quicker recovery within the mouth.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43 T1N2B M0,Stage IVa 8mm primary removed 3/5/08 4cm lymph node removed 2/22/08 2 additional sub cm nodes Tx at Stanford: 30 x IMRT, 2 x Cisplatin, Started radiation 3/27/08, Completed 5/7/08 p16+, HPV 16+ 2 Year Post-TX PET CT 5/10 - CLEAR
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Don:
Without doing the chemo, you might not have as many problems as someone who is doing chemo and radiation together. At least, I hope you dont.
ChristineSCC 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 | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | The constipation can be caused by many factors including dehydration and pain meds and it's not limited to Peg users. I had it for 2 weeks or so and it can become very intense so deal with it early and as often as you need to.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Re fluoride trays and rinses. Initially I used a fluoride rinse (for 2-3 weeks into rads) and then I stopped Biotene mouthwash, regular brushes and regular toothpaste and switched to Biotene toothpaste and brush. There was a time when everything burned, even water, the one exception was a baking soda/salt solution. Even so, I lowered the salt concentration to make this tolerable. I made gallons of the stuff with daily varying composition..... There was also a pink concoction from the pharmacist.... which burned like hell and was never used. It took a while before I went back to a regular brush and before could use mouthwash again. I still have problems with regular toothpaste. However, I expect that this should soon be reasonably tolerable as well. Depending on what you define recovery to be it can take a long time. This has to be put in context, you have to be alive to bitch about minor stuff like that!
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Victor & Don
In addition to the good advice you've gotten, my tip is to watch the radiation burns very very closely and press the doctors on what creams or ointments you can use. There are specialty gels for radiation out there that I found out about too late The aquaphor did not cut it for me, and I ended up having to use Vigilon second skin burn dressings. Also cannot stress enough the importance of keeping up the jaw exercises - if you are lucky like I was, then you won't need the therabite. Finally, take the pain pills - they really help swallowing and sleeping - for constipation I found suppositories the very best - much better than laxatives or stool softeners. Good luck and there really is light at the end of this tunnel. Tom 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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I started using the Biotene toothpaste during Tx and started using my fluoride trays before TX. I still use both to this day and my dentist recommends I use them for the rest of my life.
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: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | One more thing I can offer to all the great advice that you've gotten so far is a cheaper alternative to a therabite. During your next visit, ask the Doctor or nurse for a couple of dozen tongue depressors. Take them home and stack up as many as you can fit into your open mouth without straining unduly. There should be a bit of strain to get them between your teeth; just not too much. Then secure them together with an elastic band at one end. Slip them between your teeth several times a day, and levae them there for as long as you can each time. It'll probably only be for a few minutes, but if you do it multiple times a day, you'll keep your jaw muscles loosened. In between uses, drop the ends you had in your mouth in a very dilute peroxide and water solution to keep them as germ free as possible. They do effectively the same thing as a therabite, without the cost, and are very easy to come by. Lastly, be prepared for the effects to hit early. I only got 5 days of rad in before I lost my sense of taste, and had burns in my mouth and on my neck within the first 10 days. The following few months were really tough, but I managed to get through them without a PEG. Remember to keep swallowing, every day. I think taking your water orally is a really great idea, since it maintains muscle memory in your throat. Don't try and tough out the pain; you will be really sick, really quickly if you stop taking enough nutrition and fluids because it hurts too much. I wound up in hospital a couple of times, and literally overnight I went from feeling O.K. to being really, really ill. Much luck...it'll be done, and you'll be on the road to recovery Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | thanks to all for the great advice.
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
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Victor: It sounds as though you have done your homework and are well prepared. I worked and stayed as active as possible as long as possible through treatment. My medical team as well as just my thoughts were as long as I was occupied I was breaking through the issues. Then, as someone else mentioned, I woke up one day and the reality was everything changed. When you hit that wall just remember it's short term and "For the Best". Things are working and you're surviving!! It's a bear of a journey, but a short one in the big scheme of things. I agree with everyone on the Biotene products. I find them to be tremendous and have a standing order on the gum (By the dozen) with my pharmacist. (It's an over the counter product but just to keep it in stock for me). I chew at least a half a pack a day, sometimes more if I'm speaking a lot. It stimulates saliva and moisturizes but also helps keep the Trismus somewhat in check for me. Everyone is different but very similar and it seems as though you're prepared. You are definitely in good company here with people to help you through! Best Regards, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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