| Joined: Nov 2016 Posts: 59 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2016 Posts: 59 | Dear all- I don't know if it is okay to post a website but I read about the biotene products and changes and then found out about Oral7 from Australia. I found through their website that there is a US distributor. We found out that rad/chemo will be the treatment plan - no surgery. So next week is PEG and Port. appts, hearing test etc. I want to anticipate needs so hope to get necessary items. I would suspect the oral hygiene/dry mouth products will be needed in due time. Any one have experience with this product and company? any other recommendations ? I have a list of things to get ( helpful hints from other members here. thank you) humidifier, hospital emesis bags, flannel rubberized sheets for chairs or bed, ... skin lotion?? is aquaphor the best recommendation . Has anyone used food grade aloe vera gel for mouth sores etc? is there a product list for helpful things going into chemo and radiation here? THANK YOU ... wishing you all peace and wellness
Last edited by MrsW; 12-02-2016 06:20 PM.
MrsW Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I've used distilled organic 100% aloe Vera juice to swish and swallow, and also used virgin organic coconut oil, besides the old warm salt water baking soda rinse, do not swallow that. You can add the juices to that if you wish, but I would test the the juices out in small amount at first, as the aloe juice worked so well in smoothing my swallowing, it caused concerning choking when swallowing, can be laxative, so I cut it back, Cut the salt if it burns. Others have used Manuka honey, but that too expensive for my taste, plus being relabeled by inteputable dealers. Organic honey is supposed to work just as well, but the sugar in it burned my mouth.
Don't eat food that's too spicy, acidic. hot, sharp textured as not to injure the mouth.
Used aquaphor and cetaphil for skin care after radiation, not before, showered with liquid dove and Aveeno soap for dry sensitive skin, not too hot water, patted dry my neck, not rub, wore loose clothing as not to rub neck.
My radiation oncologist had your mouth sprayed daily by a saline solution, I think, to decontimate it, and that helped greatly reduce mucocitis and thrush. Too bad, NeutrSal was having distribution trouble since that helped with dry mouth and mucocitus. A similar product is SalivaMax, which I have not used.
When swallowing became difficult due to mucocitus, thrush, Magic mouthwash, pain meds like oxycodone, fetynal patch, and Nystatin for thrush or other systemic antifungal, microbacterials like chlorhexidine when prescribed.
I sleep own an incline bed in an electric bed. Helps with reducing fluid buildup, sleep apnea, but a wedge can help or raising the head of bed by blocks. I always have water at my side. Used other OTC gels, tablets to help with dry mouth.
Some type of wrapt around mesh or Clip for the peg tube.
Medications for constipaton, especially opioids induced such as comace, senocot, spelling, and others.
Maybe you mentioned a dental exam previously? Prescription Fluoride, dental trays are very important or fluoride varnish, and some mouth guards due any metallic fillings.
Speech and Swallow Pathologist evaluation and exercises.
In regards to Oral7, Uptown just made a recent post about it, if you look at that. A soft or baby toothbrush, soften with warm water before use, floss, but not if causes bleeding.
These are just some items off the top of my head.
Last edited by PaulB; 12-03-2016 09:21 AM. Reason: Updated after some coffee
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2016 Posts: 59 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2016 Posts: 59 | Paul... thank YOU! am emailing to self to include items in the list. again. peace and thank you
MrsW Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I just posted all the information needed to get free samples of Oral Seven products.
I have also been evaluating OraSoothe for flora balancing and dry mouth. It is all natural and fair but it is really developed for tissue repair and stomatitis relief should really be good. I have a sample if you want to try it during treatment. Send me an address via private message if you want to try it. I have 3 bottles left.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | The best thing I can tell you is to read as much as possible on this forum and absorb the info. Even with your medical background there are so many little things you can learn from our site to make things easier for your husband and also yourself.
If you can line up some helpers that would make this much easier for you both. Even if you get 2 people to each take a day of the week and help by driving your husband to his treatments it helps take alot off your shoulders. 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: Nov 2016 Posts: 59 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2016 Posts: 59 | Christine... our original plan was just that... we had a whole crew to help and share driving, caring , whatevering. That all changed when the oncologist recommended that we have the treatments at the main CCC rather than at a free standing off shoot center of the main CCC. He said, there is research to indicate it would be better for him.. all the speech, medical, etc team under one roof. So now, we will be at our home- much more isolated in the rural country and with no other sources of help. I had a minor panic attack with that, but will do whatever is in his best interest but am quite honestly, scared and worried about this very responsible burden alone. we are in a rural setting . thankfully not far from a CCC. but all the adult kids live at minimum an hour, 2 hours, and 3 hours away and all work. sigh.
MrsW Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
| | | | Joined: Nov 2016 Posts: 18 Member | Member Joined: Nov 2016 Posts: 18 | In addition to the fantastic list above I'll add a couple things.
My husband HATES the Aquaphor (think applying vaseline to your skin ruining every shirt you own and feeling sticky/goopy) and he's used it because it is a must, but a friend mentioned Jeans Cream (order online) which he uses during the day and his the Aquaphor at night. It has been a much better balance for him and his skin looks GREAT.
His other recommended product is a Water Pik. He uses only the gentle mode but he says it helps to clean gently.
He also says to keep your focus on the last day of treatment. It will help to keep you going. This coming from my hubby who just this week hit the 50% off the way through his tx.
Best to you!
Caregiver to my husband, Mike He is: 56 years old Non smoker/social drinker Hpv - SCC BOT N2C Stage 4 Dx 10/14/16 Rx of 35 days Rad & 3 rounds of cisplatin Treatment started 11/7/16 PEG installed 11/2/16
| | | | 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 | Talking about Aquaphor and other ointments...
I didnt care for aquaphor either. I was given prescription betaVal cream. When applying the cream or ointment to sensitive skin that is red from rads, pat it on gently, never rub it in. If the skin has open oozing sores you can still continue to pat the cream or ointment on after rads and cover with a piece of gauze. Im sorry I cant remember which type of gauze I used but my neck had lots of open oozing sores from rads. Surprisingly, my neck didnt scar even with all those open sores. When applying the ointment or cream, never put it on before going into rads as it could interfere with the treatment. Its ok to reapply several times daily by patting it on. If using betaVal cream, pat on only a very thin layer of it. Also when showering with a sore red, raw neck do not let the shower run on full speed on those areas. Its better to slowly pour warm water over the "sunburned" areas. To wash that area, pat a soapy washcloth gently on the area and rinse by gently pouring warm water over the area. 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | We found Glaxo-Base very good. After removing the non-stick dressing that we used to cover the sores, I would give John a saline soak (medical saline is used to soak a J-cloth, then cover the sores with the J-cloth for a few minutes), then I applied the cream. It would really well for us. We would do this three or four times a day.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Nov 2016 Posts: 59 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2016 Posts: 59 | Julie, Christine and Gmcraft. thank you for the info.. truly sooo appreciate them. GMcraft. what is a j-cloth. I am unfamiliar with that. As for the other ointments- okay. good to know. I did purchase an aquaphor no-touch tube, but will look into the others. Non-adhesive gauze is critical for sensitive skin wounds. Will get some of those and hope for none.
waterpik - got it. What about pure aloe on the skin?
MrsW Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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