| Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | OP "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Hi Finished rt on Monday and I have sore mouth using bicarbonate and water and Manuka honey which eases it. I am sooo tired I seem to spend all my time in bed! I also don't feel like eating and am still being sick at times is this usual? How long before I feel like I'm going to start feeling like ME again? Haven't got to go back to hospitsl for 6 weeks I'm drinking plenty and eating soups can't seem to keep the ensure down. Thanks Jayne xx
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes very usual - brace yourself... The two weeks following rads are the worst people think that you're done you should feel better - but rads I cumulative - so you feel the most effect at the end! Keep up with the honey. It really helps. Take any pain meds - and rest as much as possible, eat if you can to help heal and gain back your strength. I lost the bulk of my weight the two weeks following my Rads. God luck and try not to worry this is normal. Hugs and healing vibes to you.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2011 Posts: 12 Member | Member Joined: Jun 2011 Posts: 12 | My mom started her radiation this past tuesday, she is on day three. My sister that lives close by her got the manuka honey. My mom asked her radiolgist about using the manuka honey and they said not to because its an antioxidant. is this true? I have read on this forum that many have use it and it helps, we are not sure what to do.. | | | | 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 | Patty, its best to follow your doctors orders. 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yes - I answered this in another post but do what your dr says. I used it - and my dr. Was aware of it. He didn't say no, in fact I asked him before I started using it at week 4 and he also knew that I was being very careful about my antioxidants... From the beginning of treatment the only thing that went into my mouth was 2-3 teaspoons of honey, and ensure or boost. They tell you not to take antioxidant supplements - vitamin c ,e and selenium. The honey has none of this ( it actually says on the package vitamin C & e quantities are insignificant) I was concerned after reading this that the boost and ensure might have a lot of these vitamins - and the do - each bottle has a quarter of the Rda - interestingly enough I looked up the antioxidant Pamphlet handed out at my hospital.. And it says keep eating normally - just dont suppliment your diet with antioxident pills - and be careful your vitamins dont push you over their daily maximum - which was listed - it also says boost and ensure are okay... Weird - but i digress...Bottom line - listen to your dr. Sorry your mom is having a tough time. Take care and hugs!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2011 Posts: 12 Member | Member Joined: Jun 2011 Posts: 12 | thanks ladies, yes mom is doing the ensure and now going to start on the carnation hi calorie drink. I appreciate all the input. it's a tough road.... hugs back! | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I thought we needed some clarification. So I did a little more research. I'm not an expert but this is what I pulled together re manuka honey... This is not written to try and convince someone not to do what their dr. Says. I am an advocate of listening to your Drs. I just wanted to share what I learned when I was researching so others could make an informed decision. I will also post this in the adjunctive therapy forum so everyone else can read it. Plus I think people were concerned as to whether or not it was an antioxidant - so the info is here so you can decide for yourself. First off when I heard about manuka it was from someone else, prior to trying it I looked it up online. Several places are doing trials with it (hospitals) with patients to see it's affect on oral cancer patients mucousitis - results have been varied I can tell you for me it helped... But what works for one person doesn't always work for another. That said prior to taking it I asked my radiation dr. (who knew I was being careful about antioxidants etc..) He said yes. The amount I was using was very small. 2-3 teaspoons a day. Was usually all I could choke down. The honey itself is 80% sugar , 18% water, and 2% vitamins and minerals much of which is dependent on the actual honey - But this is what I got from one web site. Nutrition Facts Calories in Manuka Honey ��Serving Size: 1 tsp Amount Per Serving �Calories 32.5 �Total Fat 0.0�g � Saturated Fat 0.0�g Polyunsaturated Fat 0.0�g Monounsaturated Fat 0.0�g �Cholesterol 0.0�mg Amount Per Serving Sodium 2.0�mg Potassium 0.0�mg Total Carbohydrate 7.8�g �� �Dietary Fiber 0.0�g �Sugars 7.8�g �Protein 0.5�g ��Vitamin A 0.0�% ��Vitamin B-12 0.0�% ��Vitamin B-6 0.0�% ��Vitamin C 0.0�% ��Vitamin D 0.0�% ��Vitamin E 0.0�% ��Calcium 0.0�% ��Copper 0.0�% ��Folate 0.0�% ��Iron 0.0�% ��Magnesium 0.0�% ��Manganese 0.0�% ��Niacin 0.0�% ��Pantothenic Acid���� 0.0�% ��Phosphorus���� 0.0�% ��Riboflavin 0.0�% ��Selenium 0.0�% ��Thiamin 0.0�% ��Zinc 0.0�% *Percent Daily Values are based on a 2,000 calorie diet. Your daily values may be higher or lower depending on your calorie needs. I checked out a few place the values were similar, and the amounts were trace amounts. My hospital hands out a pamphlet to it's patients undergoing radiation therapy below is the link - it is all about anti oxidants. So prior to taking the honey... I looked into it, I asked my dr. He okayed it. I read the pamphlet, and checked my vitamins (which I stopped taking) my daily diet was nothing to worry about because after week two it was barely here and by week three it was all boost and ensure. So besides water, and 2-3 teaspoons of honey (which i couldnt always get down and which I didn't start until week 4 because I'd never heard of it) the boost and ensure was all that went into my mouth. There are antioxidants in normal healthy foods. We are told to maintain a healthy diet through our radiation treatment (though with head and neck cancer is very hard because our taste and mouths are affected ) the concern with antioxidants is mega supplements - according to the pamphlet put out by the hospital. So considering, I was only taking in 3-4 bottles of boost and ensure, and a little honey - that doesn't have any of the major antioxidant vitamins in it - I was okay with this because likely if I had a meal of broccoli meat and brown rice I would surpass any antioxidant properties found in, three tablespoons of honey and more. However I'm not an expert. If your dr. Says no, then please don't. Here's the link to the pamphlet out out by my hospital. Princess Margaret hospital in Toronto (part of the university health network. http://www.uhn.ca/Patients_&_Visitor..._RT_English.pdf Hope this clarifies.
Last edited by Cheryld; 07-08-2011 10:22 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Whaattt??
[quote]My mom asked her radiolgist about using the manuka honey and they said not to because its an antioxidant. is this true? I have read on this forum that many have use it and it helps, we are not sure what to do.. [/quote]
So is your radiologist suggesting she steer clear of fruit and vegetables too??? And cereals? And cups of tea? After all, they are also antioxidants. I dread to think what his opinion of berry juices are. I think your specialist has had a knee jerk reaction against something that sounds like a quack remedy without thinking it through.
And I do agree with Cheryl, supplements in the form of vitamin pills may not be such a good idea at this time as there is some suggestion that too much of a good thing actually WILL interfere with radiation
Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Oh for some reason the link isn't working... I reposted the link in a separate post in adjunctive therapy and now and it does - here it is again! Also it's teaspoons - I'm sorry I know in my head the difference but for some reason (possibly my iPads auto correct... ) I get a tablespoon occasionally where a teaspoon should be! Have a great day - http://www.uhn.ca/Patients_&_Vi...ent_Handouts/Antioxidants_RT_English.pdf
Last edited by Cheryld; 07-09-2011 07:16 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2010 Posts: 11 Member | Member Joined: Sep 2010 Posts: 11 | I would be the last one to suggest not using a treatment if it is effective for you. If it works for you, use it. However, here is a double-blind clinical study of Manuka honey and mucositis, published in May 2011, which seems to indicate Manuka honey did not improve mucositis. http://www.ncbi.nlm.nih.gov/pubmed/21636188However, this study indicates it might be able to reduce oral pathogens within dental plaque: http://www.ncbi.nlm.nih.gov/pubmed/21195787Again, as I said, I don't want to rain on anybody's parade. If it works for you, great.
02/21/10: Dx SCC tongue; 03/08/10: Part glossect; 05/08/10: Further part. glossect left-side PND; 2 tumors in lymph nodes; 06/27/10-08/09/10: RAD+Chemo (Cis); 01/12/11: Dx SCC on skin of neck; 01/26/11: 14 wks Carboplatin, Taxol and Erbitux; 12/6/11: 4 wks RAD; 01/23/12: Remission(!); on Erbitux 2xmonth
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