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#20920 08-20-2006 10:25 AM
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Shelagh Offline OP
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My sister, aged 57, was diagnosed in March this year with inoperable throat cancer. I believe most of the people who correspond on this site are American - but we live in the north of Scotland in the UK. Treatments are bound to be different, but I guess symptoms, feelings, etc. will be the same worldwide. By the time my sister was referred to a hospital consultant, he said it was too late to operate - she would have a massive stroke if he tried because of the position of the tumour. Lesley underwent 20 days of intensive radiotherapy which ended about 7 weeks ago. The tumour shrunk a bit and made it easier for her to swallow. She was also able to reduce her painkillers and gabapentin (prescribed to help pressure on the facial nerves). But she is suffering quite badly from side effects now and I wonder if anyone can help. The head radiotherapy doctor quite bluntly said, "This thing is going to kill you" -but he couldn't put a timescale on it. He just said that they would keep a very close eye on things. Lesley is understandably very depressed and just living in limbo. She is hardly eating now as she has no sense of taste and an extremely dry mouth. Even the tiniest bit of food dries up and makes it impossible to swallow. She visits a palliative doctor every couple of weeks and he has prescribed a spray to use for this - but it doesn't seem to work. Even the slightest exertion causes her to sweat badly around the head and neck - but we're not sure if this is a side effect of the radiotherapy or a symptom of the tumour. Today, she told me that three of her teeth had fallen out - and I think she has hit rock bottom now.
On one of the hospital visits, I asked the doctor to write down what type of tumour was involved, and all he wrote was squamous cell carcinoma. I don't know why I am writing this - I guess I am hoping for someone to write back and make things better again - though we know this will never happen. I just want to try and improve the quality of her remaining time.

#20921 08-20-2006 12:07 PM
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Welcome to the site Shelagh,
and I very sorry it has to be under such circumstances. She has a right to pain management and should not be suffering. I was on long term opioids for over 2 months post Tx. They probably took her off of them too soon. They gave me the spray too and it burned like hell. I used a concoction that the pharmacist compounded of mainly lidocaine and liquid morphine that was a "swish & spit". She should start getting her sense of taste back in the next few weeks. She would probably be better off on a liquid or blended diet, for now, and also needs to take in 2-3 liters of water a day. If she eating solids then try using a straw with the liquids to direct it and ease and lubricate swallowing. She may be able to survive longer but will have to force herself to eat or she should get a PEG tube. Radiation is pretty brutal and she should be able to gain some quality of life back, but it can take several monthes.

At this point home hospice care might give her more comfort and better pain management. Share your fond memories and past experiences together, stay in the "now" and take it one day at a time - consider each one a gift. Anti-depressants may help as well. Most of us know only too well about the feeling of living in Limbo. A few persons here with terminal cancer have had 2-3 years of a decent quality of life.

We have several members from the UK, we are a multinational forum. Cancer doesn't care what country you're from.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#20922 08-21-2006 11:16 AM
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Shelagh Offline OP
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Thank you for your support, Gary. My sister has today asked for an appointment with the palliative doctor in order to try some different medication for the dry mouth etc. and also to talk about the other symptoms that are making her so down. Although not eating, she is taking in some milk & yoghurts - so at least that's a few calories she's getting. I was reassured to read that her sense of taste might return round about now - I'm sure that would make a big difference to her. She is very independent and refuses to go in to a hospice, even for a couple of days to get her diet & side effects sorted out. She is afraid that if she goes in, she won't come out again. So she's soldiering on at home - and I do try to be cheerful and positive when I see her. Hoping that the doc will be able to help a bit on Thursday. Thank you again for your words of wisdom!

#20923 08-21-2006 01:30 PM
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Dear Shelagh, I am sending prayers for you and your sister. And wishing strength for both of you. Your being there is so important to her. Stay close. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#20924 08-21-2006 02:31 PM
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Shelagh,
Home hospice is available there. In the US they can come to you and you can stay at home. They send out visiting nurses, bathers, counselours, dieticians, etc. They will provide whatever equipment you need to be comfortable. They will insure adequate pain management. In some instances even provide on site respite care for the caregivers. It's actually less costly for the government to pay for this than hospice in a dedicated facility although those exist here also.

Does she live alone? She probably should have 24 hour care. She will need a live in caregiver. Very few of us were able to go it alone. Family and friends will have to "step up". This requires a network approach.

See this link for UK questions about hospice care: http://www.hospiceinformation.info/whatishospice/questions.asp

According to this site Hospice care in the UK is organized very much the same as the US. They probably just want to meet with her to put together the appropriate resources for home care. I have personally been through this twice with my stepmother and father and the hospice people were fabulous. The only reason why she would be kept in a hospice facility is if she required constant medical supervision (because her medical issues are beyond the knowledge or skills of a caregiver) or if she didn't have a caregiver at home who the hospice people can train.

If she could add some Carnation Instant Breakfast to the milk that would add quite a bit more calories. Surprisingly, I never lost my taste for coffee so I made a lot of Hagan Daz coffee flavored milkshakes and they have an espresso flavored Carnation instant breakfast. She needs to experiment with different tastes. The taste buds don't return all at once. It's a "phase in" process. Typically salt taste is the first to come back and sweets are last.

Yogurt with acidolpholis will help inhibit thrush as well.

I don't believe that there is much in the way of medication that will actually stimulate salivary function.

Drugs like Ethoyl will protect the salivary glands somewhat during actual radiation but it is a very daunting treatment and most can't tolerate it. It's not effective for post Tx.

Most of just carried a water bottle everywhere we go and consumed basically liquid diets or foods like soup, pasta and things with lots of sauce or gravy. Meats were one of the hardest to swallow. I still have problems with meats like overcooked chicken or steak. I basically order beef "still mooing".

Biotene has a variety of products that will help with dry mouth issues as well. Go to the hompage and do some digging around there is a ton of information there.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#20925 08-24-2006 09:48 AM
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Shelagh Offline OP
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Gary,
Thanks for all the information and help. We had an appointment with the palliative doctor today and he has put my sister back on steroids which he thinks will help a lot of her 'minor' problems. He more or less said that the salivary gland had been permanently damaged - which didn't go down too well! So she just has to persist with the mouth gel and lots & lots of water.
She has found another lump in the throat area just this week so we are going back to the hospital consultant on Wed. It might just be a gland thing, but best to get it checked out. And we're hoping that he'll also be able to get Lesley an appointment with the hospital dentist. Apparently there is an extremely lengthy waiting list - but I would hope that due to her circumstances, she could get seen without too much delay.
Thanks for the advice about diet. I suggested lots of things to her today, but she really has given up on food. A few weeks ago she at least managed to eat potato & gravy - but she says that as she now has absolutely no appetite, as everything tastes like either cardboard or cotton wool, and as food just dries up in her mouth and can't be swallowed - well then, she just can't be bothered eating. The doc today didn't seem unduly concerned about this. I got her some dissolving vitamin/mineral tablets this afternoon - and it took a whole lot of persuasion to get her to sip it down. Unfortunately I live and work 30 miles away so can't care for her on a daily basis. She won't hear of any home hospice care - just says that she can manage on her own for the time being. So I guess I just have to go along with that - I can't force her to do things she doesn't want to, even though I think it would be better for her.
But it helps to talk about it with someone who has been through it and understands. Thank you for that.
Shelagh

#20926 08-24-2006 12:30 PM
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Hello Shelagh
I am also from Scotland... Dunoon, on the west coast.
I am so sorry you are having to go through this, please dont hesitate to private message me if you feel like it.
I am sure your sister has access to nutritional suplements on the NHS.. but if she has lost heart you are right you cannot force her. Maybe she would like a milk shake with lots of ice cream and a carnation instant breakfast in it...
I would suggest that she ask her Doctor for an anti-depressant, it cannot hurt.
I wish I knew what to say to make you feel better , I know you are really scared for your sister. Don`t hesitate to ask if there is anything we can do to help.

Take Care
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#20927 08-30-2006 09:39 AM
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Shelagh Offline OP
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Just to say that we visited the consultant again today and he doesn't think that the lump on the other side of the neck is anything to worry about. He said that tumours can occasionally appear on the other side of the original site, but he doesn't think that's the case here. It's actually smaller than last week, so he is not unduly concerned about it.
My sister then asked about getting her remaining (very wobbly) teeth extracted. The doc explained that they are not very keen to do this due to the high likelihood of infection and slow rate of healing, but as hers are in such a bad state, they will extract the worst two or three next week and then, all going well, another couple in a fortnight's time. We know that there is a very long waiting list for a hospital dental appointment, so we're very grateful that the consultant is getting Lesley seen almost immediately.
Another piece of good news is that the steroids that Les started again last week are helping a lot and she feels she has more energy - and even a bit of an appetite again! So it's back to the potato and gravy - though she still can't manage to swallow chicken or meat. I suggested mashed- up carrots and turnip, just to get some vitamins etc. We did ask about anti-depressants, but the doc thought we should wait to see if the steroids improved matters before prescribing them. My sister was really good today after the hospital visit and more like her old self, so it was the right thing not to prescribe them for the time being. What a difference a week makes - and some magical steroids.......
So this thing is like a rollercoaster - down one minute, then up the next. You just have to hang on and go with it.
Thank you, Marica, for your note. It's nice to hear from a fellow Scot!
With best wishes,
Shelagh

#20928 08-30-2006 04:07 PM
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Tell your sister to try this recipe, I eat it at least once a week.

Ham shoulder in a huge pot and boil it for about 45 minutes covered with water.

Add potatoes, turnips, cabbage and carrots (sliced of course) and boil until the veggies are done.

Serve it up and MASH the heck out of the veggies, even pour some of the broth from the pot on them..........delicious flavor. I add vinegar to my cabbage also. If I cut the ham up in tiny pieces and mash it a bit, I can also eat that.

Then the next day, I cut all of it up into diced pieces and fry it up in the skillet with lots of butter. Fry it up good, then mash it on the plate. I have no top teeth at the moment and had radiation also, and I can eat all of this great.

Hope it helps.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#20929 08-30-2006 10:45 PM
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Shelagh,

What a battle. My heart goes out to you and your sister. One must give her credit for wanting to stay independent. We never want to give up. I am also glad to hear your sister is gaining some appetite back.

I read the recipe above, and have one suggestion to add. Have her put veggi's thru a blender. potatoes thru a blender..EVERYTHING thru a blender.

Set up your dish with a spoonful of each thing, and you would be amazed at the color on the dish... all mush. Green for asparagus, white for massed potatoes...yellow for eggs.. each one thru the blender separately.

Then when I ate, one mouthful at a time... softened with broth... I could swallow just enough..to enjoy it. So what you don't chew!!! Chewing isn't the best thing in the world.!!!!

My Dad has achalasia, a swallowing disease, for some 5 years now. Mother and I have become expert in the soft mushy diet..because there are times he can't even get a liquid down his esophagus.

I have now adopted many of the tricks we learned to my own situation... They work.


You are in my thoughts and prayers.

Nanci
*******************
SCC - Early detection. 1/4 of Tongue Removed, left side. Following carefully.
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