Hi,
My mother aged 61 years is suffering from Oral cancer (right cheeck) from past two years.
In Dec 2010, we found a small tumor that was developing in the mouth and that was removed surgically. And post surgery radiation was also done.
Almost for a whole year after the first surgery she was doing very well.
Early this year the tumour re-appreared and it was again operated on, and removed surgically. This time the surgery was very long and grafting was also done on the face.
Soon after the second surgery we found another tumour near the lip, this was like within 45 days from the previous surgery.
As she was already very weak post surgery, another surgery was not possible. That's why Doctor's suggested chemotherepy.
We were recommended another round of chemo but we postponed it as my mother was getting really weak due to the first session of chemo.
For almost two months no medication was done. But we observed that there was a hole that was getting developed at the site of graft on the cheeck and also new eruptions started appearing very frequently. The typical cycle for the eruption is that it starts with a small bump, gradually develops into a boil and then a hole starts forming in the centre.
This prompted us to consult the doctors again and with their recommendation we did another round of chemo.
Now even after the second chemo session, we observe that every few days newer eruption are happening.
Its impossible for her to take food intake from mouth and she has a food pipe in her stomach. This limited diet has made her very weak.
Now the consulting doctor is not recommending any further treatment. I am really worried as every week i can see a new eruption

this sounds very peculiar Nanjangud

Are you sure these eruptions are cancer? Did the doctor biopsy any of them at any time either before surgery early this year, or when it reappeared or before chemotherapy?

Do you know what the chemotherapy was called?

Did these eruptions look and act the same after surgery compared with after chemo or were they different?

Welcome to OCF. Im sorry to hear about what your mother is going thru.

As far as her feedings go, she needs to have a higher caloric intake than a person who is well. Her body burns up calories very quickly fighting whatever is going on. In the US, there are many over the counter formulas that can be used if prescription formula isnt available. Here in the US we have hundreds of different feeding formulas the doctor can prescribe that a medical supply company will bring monthly. Check with her doctor about prescribing a feeding formula for your mother. She needs at least 2500 calories and 48 oz of water every single day.

I laos wondered if her sores had been biopsied. Is the chemo Erbitux? This will cause rashes and blisters. Chemo is used alone for pallitive care. By itself it will not cure the cancer. I would suggest speaking with her physician about her long term care and then seeking out another specialist. I would say go to the largest cancer facility where they will have the most experience in treating oral cancer.

Best wishes!

Hi Christine,
Is it someway possible for me to send you the case summary as given by our Hospital?
I also have some pictures(though very disturbing) that I can send.
I really really hope the blisters are not cancer and are solvable.

HI there... chemo alone will not cure oral cancer. That's first off... radiation... a second round in conjunction with chemo should be given, possibly Erbitux. It sounds like she is very weak, though so proper nutrition is a must. If the cancer (assuming this is what it is.. the only way to know for sure is a biopsy) is still localized, then they are letting your mom die for no reason.

find another dr. willing to treat her... pump up her nutrition, high protein foods, fresh veggies, after radiation people's mouths are very sensitive and ulcerations can occur easily - make sure it's cancer. good luck.

Nanjangud, Im very sorry but I am not a medical professional so sending me your mother's medical summary would not be anything I could assist you with. Each country does things differently, here in the US we have standards for medical care depending upon the patients specific condition. I dont know how hospitals are run or what services are offered in any country other than the US. As a 3 time oral cancer survivor and member of this forum for over 5 years, I have learned an incredible amount of info about oral cancer. Thats how I am able to offer my assistance to other members. Feel free to post your questions here on this forum and we will do our very best to help you.

Hi Klo,
We have done biopsy each time there was a new growth.
We also did biospy after it reappeared earlier this year.Each time it came as positive for mailgnancy
The chemothereapy was called Chemotherapy with inj. Taxol 200mg(D1) + Inj Cisplatin50mg (D1-D2). I have just copied the exact words as mentioned in her case summary.
The eruptions look the same as they were earlier but maybe because there is no treatment now, after a while they become like a ball, and start developing a a hole from centre.

Hi Cheryl,

You have given me some hope!
In the first surgery the doctor had removed the lymph nodes.
What exactly would you call as a localized cancer?
In my mother's case it started from inner cheek(first surgery & radiation), the next was in the corner of lips, right side (second surgery and grafting). The third was below the lower lip, right side. For the last one, we went for a chemo.
Now we see new eruptions around that area, and the new one is on the next, below chin to be precise.
Her disease is called Carcinoma Right Buccal Mucosa.

Thanks Christine.
but I must ask : have you seen any such case where the eruptions are so frequent?

Hi Christine,
Apologies for bombarding you with so many queries !
I went thru my mother's diet chart and she is taking Nestle Peptamen ( 2 scoops in 100 ml) 5 times a day. After looking into the nestle website what I understand is that this gives her 500Kcal.
Apart from this she is having veg soup 2 times, Kabimmune ( another supplement) 1 time and Rice& pulse mix one time. Each feed is 100ml.
Do you think this intake is sufficient?

Nanjangud,

Her calorie intake is good, protein intake is "ok" (10g/scoop) depending on your mothers weight (1-1.5g/lb of body weight, excuse the non metric measurements as we don't use metrics in the US) with plenty of carbs.

The vitamin profile of Peptamen is good but they are delivered mostly via isolates which are more difficult to digest/absorb in the body. Fiber would be a concern for me as Peptamen doesn't deliver any and may lead to constipation if she's on pain medications. I would worry that the Omega 3 intake would be low as well.

Understand that when the human body has cancer, infection, disease etc, the hormone response that activates our immune system interferes with digestion and absorption. Compounded by the effects that the stress of the cancer experience adds (stress produces Cortisol, which counteracts insulin, further affecting absorption) and this leads to the breakdown of lean muscle mass due to the body's increased need for amino acids due to the hyper-metabolic state caused by your body trying to heal itself from cancer treatments and fight off the disease through immune response. This is a condition known as cachexia, or cancer related wasting syndrome and is the reason proper nutrition is crucial.

Hello Nanjangud,

Eric is excellent with his nutritional info so I will leave it to him since he looked it all up and converted it already. I am much more basic with my explanations by telling you while fighting cancer a patient burns incredible amounts of calories. This makes it where they will need 2 or 3 times their normal caloric intake.

From your explanation Carcinoma Right Buccal Mucosa, your mother has cancer of the cheek. I would have to assume her doctors have biopsied the eruptions to be able to put a name on it. I must caution you again that while this site is not made up of medical professionals, we can give you our opinions. This is also without knowing the patients full medical history or even seeing the person in front of us to assess. On top of this, not many on this site have much info relating to medical procedures outside of the US and Canada. Every country is different even though they treat the same disease. Here in the US medical procedures must go thru years of testing before becoming the regular practice for patients. Not that those things would make a huge difference in the things we would tell you. Oral cancer can be a very fast moving cancer especially when it keeps recurring, seems like each time it comes back faster. Treating Carcinoma Right Buccal Mucosa with chemo is used for pallitive care and will not be a cure. Only thru radiation with or without chemo and/or surgery can this type of cancer be eliminated completely. I would still suggest my original opinion to take her to another large cancer facility.

Best wishes with everything you and your mother are going thru.

Hi Christine,

My mother has already recd one cycle of radiation.
So can it be given again?
What I understand is that radiation can be given only once.
Please let me know.
Thanks

Yes radiation can be done twice. It is not common but it can be done at least here in the US it is possible. There are several members of this forum that have had a second dose of radiation. I know personally 3 individuals who have had radiation twice. From my understanding this can only be done if it is a year or more after the original radiation treatments.

Localized is when it has not moved out of the area, in this case it is popping up in her mouth. If its not in her nodes or hasn't spead to other places,lungs, liver etc... The. It's still localized... Push for more radiation. Good luck

Thanks Cheryl, Christine.
I will initiate this at the earliest.But she is extremely weak.
I remember last time when she had radiation. It was very painful.Do you have any tips to reduce the after effects?

flattened club soda at room temperature to drink, it's healing. a good cream for her neck. Manuka honey if you can get some... it's anti bacterial, anti inflammatory. You can swallow it as well.
Best of luck.

Thanks Cheryl.
We are applying Manuka Honey on her wounds. Her biggest issue is that there is a big hole in the centre of her cheek. We apply manuka and keep it bandaged most of the time.
And that's the reason she has a tube fitted in her tummy for food intake.
I have no idea how the hole developed, there used to be a grafting there around 5 months back and gradually the hole started to develop and has become this big, almost half the lenght of my pointer.

Apologies, didn't realise that the message got submitted!
So is radiation possible with that big an open hole in the cheek?

It's likely a fistula. (radiated skin has trouble healing) They should pack it and treat it. So it heals - sometimes they need surgical intervention and a new graft. This will take time because it has to heal, while her cancer grows. A radiation dr. Could tell you better if rads can be given with the hole- truthfully it depends on where her other cancers are and where they'd focus the beam. What I would do is ask them to surgically remove as much cancer as possible., repair what they can then do radiation, usually 6 weeks after - but in that time hopefully she will heal and get preparations for radiation underway. You need to find a good medical team that can work together. Good luck.

Hi Nanjangud, in India usually the re-radiation is done after two years as was the case with my father. For calorie intake, if your mother is not diabetic, see if you can get her Abbott Prosure (http://www.apollopharmacy.in/healthy-living/prosure-orange-pow-380g.html and http://prosure.com/Prosure-Information/Default.aspx), it will help in recovering from cachexia. You can also try blending banana with milk and feed her. Kindly note that Nestle or Abbott powders are only supplements and your mother still requires other dietary intakes.

Kindly share the treatment details and the details of doctor and hospital.

Hi Eshwar,
She is being treated at HCG.If you don't mind would like to know about your father's illness. Maybe we can exchange notes!
Also I am giving her kabimmune. I guess its similar to the product you suggested. We are under the care of a dietician and she updates her diet every 15 days. Right now we are giving home food three times and rest is powders.

Hi, my father had first occurrence in early 2009 on his left lateral border of tongue and the ulcer refused to heal. He had partial glossectomy of tongue and selective neck dissection on left side of neck in Mar 2009. It was followed up with Concurrent Chemo-radiation (daily radiation, total 60 Gy for 30 days with weekly Cisplatin). He went on to fully recover by August 2009 when his PET/MRI confirmed that he is cancer free. He went on to active life and built a big home in Palakkad, Kerala to lead rest of life peacefully.

In early 2011, he had a routine Head-neck CT and we realized that the 6cm tumor is back on the right side of neck. He had 3 x 72 Hours TPF/DCF chemo to reduce the size which failed to help. It was followed by Radical neck dissection and 60 Gy of Unilateral radiotherapy on right neck to kill any residual cancer.

He was on path to recovery but another PET/MRI dashed our hopes in December 2011 when we found that the cancer is persistent with new hot nodes. He was on Palliative chemotherapy (Gefitnib) since then till he breathed his last.

Post-radiation effects and chemotherapy took toll on his diet and health. He started to have strokes (probably due to blocked right carotid artery) and cachexia. He used to have episodes of severe pain near his right ear with drop in blood pressure and oxygen levels. He was hospitalized for 3 weeks in May to get situation under control. Except during pain, he was absolutely fine through the day. We tried variety of pain killers and finally he was on Fentanyl patch. We lost him to cardiac arrest on 26th May, it was a peaceful death.

[quote=Nanjangud]Also I am giving her kabimmune. [/quote] Kabimmune is to boost immunity and gut function. My dad also used to have it. I told his onco that I want to give him Prosure and he approved it. It has Omega 3 Fatty acid supplements that benefits cancer patients, improving appetite, weight and quality of life. My dad was fine as long as he was on Prosure but we had to stop it as his diabetes was going out of control.