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Dizz_zzey #199151 09-29-2019 01:29 PM
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I'm starting to see an increase in mucus production and the thickness of it. I'm trying to remember/find the water + bicarbonate (baking) of soda + salt mix to help clear it. I'm using wam, slighty salted water at the moment.
If anyone could point me in the right direction, that would be lovely smile Thank you

Last edited by Dizz_zzey; 09-29-2019 01:37 PM. Reason: add in "baking"

F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199154 09-30-2019 04:33 AM
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One cup warm water, 1 tsp baking soda and 1 tsp salt. Most patients find the salt burns their mouth, I remember I had a hard time with the salt the first few attempts. Its ok to cut back on the salt if you need to. Whatever works for you! Just do your best to keep as much salt as you can in your mixture. Stir it up and take a big mouthful to swish around in your mouth for up to a minute or so, repeat 4+ times a day.

Another idea many here have found helpful is Manuka honey. Its been scientifically proven to be beneficial to patients who use it to help heal their mouth sores. I forget which number but kinda think for the best results patients need to buy at least a number 12 or higher. In the US, Manuka honey is now commonly found in grocery or health food stores.

Hang in there, you really are doing great!!!


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
ChristineB #199157 09-30-2019 12:36 PM
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Thank you Christine. I'll put that together tonight and play around with the salt levels.

Thank you so much for your comments too. I'm really pleased with my progress. I know I'll lose some bits as the rads continue (10/33 complete) but at least I know I should be able to achieve them again later on in a few weeks/months time.

I have a mouthwash and a mouth spray that will help me continue to eat (HURRAH!!!) It's benzydamine, so it works like MM. I spoke to my team. Apparently some hospitals in the UK do use MM, just not mine. They feel that the benzydamine works just as well. I've used it before I had surgery on regular basis, it comes in a spray too so I can carry it with me when I'm out, it was good stuff.

I told my team about OCF and they are now going to recommend it to future patients from now on. They loved my knowledge and understanding of everything that is happening, and also how I make suggestions and ask questions. They are impressed that it's run by OC patients who share experience and use science based fact and not Dr Google.
They liked the Manuka honey but also suggested propolis as it can be added to water and swished around my mouth. Plus propolis is a quarter of the price of Manuka honey in the UK, and it gives similar results.

My hearing test came back. Compared to the base test I had in July, I have a 25 decible loss from the high pitch area. It's not noticable to me. The tinnitus is disappearing too. As I'm on a clinical trial, I am unable to switch to carboplatin. If I do then I'm not on the trial anymore. So I've said I'm happy to continue with the next dose. My team have said that they are happy to give me one more dose and cancel the 3rd. So that's the plan.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199162 10-01-2019 07:55 AM
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I also had my 3rd big bag dose of cisplatin cancelled. From what Ive noticed with OCFs thousands of members who also were given the 3 big bag delivery of cisplatin, more than half have the third dose cancelled. How it was explained to me, the first dose is the biggest and most important one, the second is a lesser quantity and third even less which does not make much difference if eliminated. The chemo makes the rads more effective by targeting the cancerous cells.

You're doing GREAT!!!! Keep up with pushing your daily intake, even if its just 2 more bites or 2 more sips of water. It all adds up and will help make this easier to tolerate. You also have your world-wide cheering section here on OCFs forum to help you along. smile


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
ChristineB #199163 10-01-2019 08:11 AM
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It seems to be quite common to have the 3rd dose of cisplatin cancelled. I was told that in research studies, the overal results of a 2 bag dose compared to a 3 bag dose came up as the same. I am fine with that. So only 1 more overnight stay in hospital. Whoop whoop.

I'm so glad I'm on this site, your knowledge and support really helps keep me going.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199165 10-01-2019 01:26 PM
Joined: Aug 2018
Posts: 345
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husband had 3rd dose but it was cut down as he was too sick to take the full dose prescribed. He was definitely in the worst shape in the hospital after that one. It seems they ended up keeping him a few days if I recall correctly.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #199166 10-01-2019 02:34 PM
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Ahh OK. I'm glad I'm not having the 3rd dose now smile
I'm being admitted for the 2nd infusion. I'll have rads and pembro in the same day. It's going to be a painful week next week I think.

My husband is away for work for 2 nights that week. Whilst I'm looking forward to being able just to allow the fatigue to consume me (and not have to worry about talking to someone or being grumpy at them) I might see if a friend of mine will do a check up on me while he's away.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #199168 10-01-2019 05:58 PM
Joined: Aug 2019
Posts: 57
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I had my second big dose of cisplatin last Friday. Today, I noticed some ringing in one ear. I talked to the nursing team who asked me to monitor whether the ringing lasts, gets worse or fades. They said there isn’t much to be done and hope it subsides. If not they may reduce dosage of cisplatin for the final treatment. Anyone else experience ringing in ears?


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Barry Toronto #199171 10-02-2019 06:06 AM
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Cisplatin is known to cause problems with hearing in some patients. When John had his chemo, he was first sent to Toronto General for a hearing test, which I think was the baseline. Then a year after treatment he had another hearing test and there was significant loss. Please monitor the ringing in your ears. As well, let the team know if you feel any tingling in your finger tips. That may be a sign of neuropathy. John did not get his third bag of Cisplatin because he had developed deep vein thrombosis at that point and he was in very poor shape. All my very best.


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.
Dizz_zzey #199184 10-04-2019 09:20 PM
Joined: Jul 2019
Posts: 34
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Hi Dizz,

I'm so glad to hear things got better for you! I really hope your trip works out!!

It may be because you're doing the clinical trial but Scott doesn't have any of those things that they have all set up for you. They did have a dietician come by at the cancer center but he hasn't seen his surgeon since the beginning of August and doesn't see him again until, maybe next month??? And I have no idea if he will get a speech therapist. smh But I'm guessing that they may be waiting until the RT and chemo are finished before going further or maybe just waiting for him to heal some more. Not sure...

Did they have to cut your abdomen? Scott's only surgical wound is on his neck and it has been seeping pus since around the 2nd week out of the hospital. It stopped for maybe a week, then started back up and still looks really bad. Now he has radiation burns on top of it. frown The burns don't look too bad though and he says that he cant really feel them. I don't know if it is because of the numbness in his neck or if it's just because they really aren't that bad. He says it hurts to swallow but he's not really having any other issues atm. He did have thrush but the nystatin seemed to clear it up. Only relying on the feeding tube for nutrition now, we stopped doing Nutribullets because it burned his mouth but he is still drinking water. He has mainly been resting and having to cough and spit a lot. Bless his heart. frown Only 2 more weeks left though!

That is so great that you've planned ahead with all of the different foods and even going out and all. And only one more chemo to go. Keeping my fingers crossed for you. I hope it goes well but if it wears ya out remember to just rest when you need to and don't push yourself too hard.

Best wishes always!! and keep us posted. (I always check in and read even though it sometimes takes me forever to get to sit down with my laptop and write. smirk )

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.

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