| | Joined: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | I haven't posted in a while. This whole treatment regimine is awful at best. My husband continues to have a very good attitude and is 100% positive that he will beat this thing. He finished up his chemo, Taxol, Cisplatin and IFEX - 3 days worth every three weeks for a total of 18 hours of "drip" each treatment week. He tolerated pretty well, except for the last treatement and we were very glad that the docs said he did not need to do round 4. Docs ordered Erbitux and he had his first drip - a double dose on April 2. We ended up in the emergency room at midnight that night - if a side effect was listed - he had them all. The worst is the nagging headache that still persists. Suffuce to say - no more Erbitux but the acne side effect is also lingering and quite frustrating for him. He is being blasted on both sides of his neck and base of tongue. He had a sore throat by day three last week and they made a couple of adjustments and his throat isn't quite as sore - although we know its coming soon. The biggest issue is the development of tongue sores already. He says it feels like canker sores - he started a honey regimine as directed by his doc (although he's been doing it since starting chemo). I found a Canadian study on the benefits of Manuka honey a while back. I read something just recently, and found a couple of comments here about using hydrogen peroxide - swishing a tablesppon around for 5-10 minutes once a day...has anyone tried this? - or have any other suggestions. Thanks for any advice or insight.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Lisa, it's good to hear from you, I've thought about you guys often. Never heard of the hydrogen peroxide but I hope he finds some relief soon! My prayers are with you guys!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | 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 would think that would be painful.
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 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Manuka honey is supposed to be good and helps reduce the side effects of radiaiton. I don't remember when you are supposed to take it.
I'd stay away from the hydrogen peroxide until you check with the doctor. For some reason, I think my dentist said to never use it in the mouth but I don't remember why. I must be brain dead today.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sounds painful to me too. Just had a young Dr friend call to check on me. My sons best friend. I have heard peroxide is to stayed away from.
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 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Not sure there's much you can do for this except regular pain meds offered by oncologist - magic mouth wash, fentanal ( sp? ) patch, hydrocodine, etc. Unfortunately, this is part of the deal for majority of folks as the treatments start adding up and having their side effects. Hang in there.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 |
I rinsed my mouth several times per day with....
16oz water
1 tsp baking soda
1tsp salt
The salt started to burn my mouth so I reduced it and eventually only used water and baking soda. It did help with mucous and soothing the mouth sores. Of course, I also had pain meds and magic mouthwash. The MM helped alot to numb the pain in my mouth.
There are several varieties of magic mouthwash. Mine was lidocaine, maylox and benedryl.
A few people recently have mentioned Manuka honey. Im not familiar with it, but if the doc recommended it, then hope it helps. Best of luck with everything.
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: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | Doc wrote him an RX today - poor guy - red hair (or used to have red hair) very fair skin - his throat is already a mess. Doc said that his throat and tongue are in worse shape than usual given only 9 rads - gonna be a long road.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ask the doc for a prescription for Biafine. It is a cream you put on after you get home from radiation treatments as long as you have no open wounds. It is also supposed to help prevent burning besides healing burns. Would have been better if he had started using it before he started treatments, but better late than never.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2010 Posts: 235 | Hi Lisa, hope you are holding up ok.
Dave is on his third week of radiation and going for his second chemo on Monday so I think we are close to where you and Ken are.
The team at Sloan recommends rinsing your mouth every 4-6 hours with some variation of the baking soda solution.
They also recommend a humidifer especially at night
For skin care, they suggest that he use Aquaphor or Eucerin twice a day. Right after the treatment and at night. That stuff is very thick.
You could also ask the nurse about sprays like Cepacol. It provides temporary relief.
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | | Joined: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | Day 13 of rads today. I had really hoped (and I know Ken did too) that since he basically breezed through the chemo the rads wouldn't be so bad. He is still eating a somewhat normal diet but I suspect for not too much longer. It makes me so sad... I wish our kids didn't have to see him get sick. I hate cancer!
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Lisa,
Your entering the toughest part of the program, but I can tell you from the experience that the kids adapt and bounce back the fastest. My 13 year old got used to some of my new limitations and was even suprised when I started doing the normal stuff again as I recovered.
I just got back from a two day celebration of the 100th aneversary of the Boy Scouts, camped overnight for two night (28 degrees)and walked in a 5 mile parade. 4 months ago that would have been an impossible task. My kid was actualy impressed with me doing normal stuff.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Lisa Very few people breeze thru radiation. Trying to give you some bright news in a dismal present, it may be just as well your husband did not toleratethe Erbitux. In retrospect the terrible skin side effects & aggravation of radiation damage were not worth it especially considering it did not prevent a recurrence. In fact the RO switched me up for the second chemo TX saying it appears now that Erbitux doesn't work well on some BOT cancers. More good news, my mouth sores and radiation damage were horrendous but within three months after TX mostly mitigated. Others bounced back much much faster It is a very slow healing process but the sores, unlike other effects of radiation actually go away. Trust me, you will appreciate the difference. Keep the Faith BTW, I hate this cancer also and am sorry your kids have to see this. Charm
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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Lisa,
This is a very tough time for you, Ken and your children. You are getting some great support here. My thoughts are with you. Hang in there!
Anita
Anita (71)
CG to husband, Clark, 82,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections
| | | | | Joined: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | So Ken has 6 more radiation treatments to go (including today). I haven't posted in a while - it started to go bad so quickly and we were so scared but amazingly it turned around. Not to say that his throat doesn't hurt or his skin isn't really realy red - but it really hasn't been so bad. The doctor gave him a prescription for what he calls his triple mix elixer - hydro, lidocain and malax. He takes a gulp about 10 minutes before meals and has basically been able to eat most anything. He hasn't lost any weight. In fact through this whole process he has gained almost 30 pounds. The best stuff is the Caphosol. Worked a miracle. Within a couple days of using the stuff (5 or 6 times a day) all of the sores in his mouth were gone and are still gone and the mucus is nominal. He carries a bottle of water and uses Numoisyn for the dried up saliva glands. It could all go to hell in a handbasket this week - but we are sure hoping to tow the line. He still goes to work every day - just doesn't put in the 10 or 12 hour days - more like 6 or 7. Last Thursday when the doc looked in his throat he commented that he'd never seen a better looking throat this late in the game. At night he takes either a 30mg morphine sulphate tablet or a 500 mg hydro so the pain has been tolerable. He is definately tired and sleeping longer, later and napping when he can. I'm pushing for him to come home after rads this week so he can rest and not have to talk - instead of going back to work - but we'll see.
I hope no one takes this post the wrong way in that woohoo my husband has had such an easy time... What I'm trying to get across is that sometimes its not so horrible and it can be tolerable. We feel very blessed at this point.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Lisa,
Never feel bad about good news. There are many who read these posts who want to get some idea as to what they can expect. Ken's case shows that there are those that do not have such a tough time.
I had it fairly good until the end of treatment when I developed some mouth ulcers. Other than that I maintained my weight and only missed a few weeks of solid food.
It's great that Ken is feeling good enough to work. I was sleeping a good deal at his stage.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Lisa, Gordon is still suffering horribly. When you say a mix. of hydro, lidocain and
malox, (hydro being water?) what proportions do you use?
I've never heard of Caphosol - what is it used for?
Seems we have to get info. here rather than having doctors suggest these
things for us. It's kind of frustrating.
And thank heavens someone is having an easier time of it. I hope you and Ken will have a faster recovery when it's all over and get your lives back to normal.
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | OK, now I know Caphosol is a prescription med. used for mucositis and
dry mouth. Don't know if it's available in Canada, but I will be asking
about this. Anything that will help!
Still not sure about the proportions for the "Pink Lady" - lido. and maalox.
Thanks, Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | Anne - the hydro is hydrocodone... the mix is ratio is 1:1:1 - it has been a God send for him. He does not have a PEG - and as long as I overcook everything he's eating just fine. Had steak last night - definately not overcooked - but pasta and such, all the veggies etc. He's been lucky so far.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Re: Caphosol: the Pain Management team at the cancer clinic we deal with
has never hear of this. I called one of the larger drug store chains and they
could find no reference to it. This must be something only available in
the U.S. However, I've printed out info. from the product website and will
take it in for our appointment tomorrow. The pharmacist seemed to think
it might be similar to magic mouthwash, but I'm not sure that it really is.
Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Jan 2010 Posts: 24 Member | | Member
Joined: Jan 2010 Posts: 24 | Anne - sending you an email with pictures of the box, vials and drug sheet.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete
Stage IV SCC BOT, bilateral lymph involvement
DX 01/08/2010
Taxol, Cisplatin, IFEX
Treatment completed 6/2010 - all clear
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