Oliver, If there is time I would sure have your mom switch to the IMRT.

Only one who has had the dry mouth cannot understand the ordeal of attempting to eat food without saliva. Additionally, there is a drug "amifostine" which helps save the salivary glands during radiation or chemo. Unfortunately, I was allergic to this drug and had to stop taking it. Thanks to IMRT I only lost about 20% of my ability to produce saliva. So to me, IMRT is a miracle........

Yes it was IMRT mom was offered, there seemed to be two main disadvantages, firstly the oncologist said it would take an additional week to start treatment, and he said the radiotherapy would only operate at 80% strength. As you can only have one shot mom wanted to go for the full dose.

I understand everyones concerns, however the oncologist stressed that IMRT was a relativly new procedure and he would feel more comfortable giving mom the traditional radiotherapy given it has spread to the tongue base and left node, and I feel its the right decision. One thing my mom said which struck me was whats the point of having a working saliva gland if your dead!

Has anyone else used "amitostine" I will call our nurse tomorrow and ask her about it, is it used in th UK? Sounds interesting if it will help to preserve the saliva glands.

I also wonder if anyone else has used any complementary therapies, I have been reading up on Essiac, a herbal remedy, maybe sounds daft but want to try anything that can help.

Also we have had a letter from the hospital about the delays in moms treatment (you may remember she was first seen in April) and she is only starting treatment now due to delays by the hospital and the fact she was not taken seriously, they even say in the letter, as a woman who does not smoke she was not considered at risk which to me seems so wrong. I am booking an appointment with a solicitor tomorrow, as the incompitance of the ENT surgeon mom saw in the first place is shocking, and something needs to be done about him even if it is just to help others in the future.



Thanks for your advice everyone!

Oliver

Hi again Oliver!

There are some complementary therapies that can be used in conjunction with standard treatment but please beware of alternative therapies. Big diff!

Be sure to research complementary therapies and don't believe or rely on anecdotal information. Seems that everyone has a relative who was 'cured' by a bracelet or a prayer chain or some form of tea or vegan diet. Snake oil has been around for a long long time and unscrupulous vendors have made a fortune.

As far as essiac tea goes:

Sloan-Kettering on Essiac Tea

Here are some reputable websites that can assist you in your research:

Sloan-Kettering -- About Herbs, Botanicals & Other Products

Quackwatch

Use the Search field in Quackwatch but please be sure to read this group of essays:

A Special Message to Cancer Patients

And to make sure you're not being led astray, here's a Wikipedia article about Quackwatch that includes commentary from docs in the UK:

Wiki Article

Am sure you can find similar sites that originate in the UK - these are those that I'm most familiar with.

Good look in researching and reading. It's like taking on a second job, isn't it?

Best of luck,

Mimi

This message has been edited. Last edited by: Mimi McC,

Oliver,

it was over 2 years ago that they gave me the amitostine shots (August 2007). I recall them charging medicare something like $2,000 a shot. very expensive. i don't recall what medicare actually paid. I finished my IMRT in Sept 2007.

Personally I would focus on your mom's care. It is too easy to get sidetracked since holding someone accountable can take on a life of its own. Now, if your mom doesn't make it, then yes, I would make sure that the culprits be held accountable...... or for that matter take the same measures after your mom makes it.

In the mean time use your energy and time to get your mom to focus on getting well and keep good notes as you go.

later, pete

This message has been edited. Last edited by: pete228,

Hi Everyone,

Question directly from my mom.

She is wondering why the doctors are not doing a neck disection on her. she has a positive lymph gland in the left side and spreding to thge base of the tongue.

Everyone on here seems to have had the neck disection. Can the Cancer be cured by the Radio and Chemo alone?

Advice welcome as we are getting concerned.

Oliver And Carol.

Hi

I had the neck dissection as although there were no visible signs that the cancer had spread from my tongue into the lymph nodes in my neck, it was done as a matter of course in case there was anything microscopic. Unforunately, there was one 'unpredictable' node, so I ended up having six weeks of radiotherapy as a precautionary measure. (Also had a third of tongue removed and reconstructed)

All the best for your mum

Wendy

Oliver and Carol,

I would directly ask the dr. I was told I had a spot in my neck my ent and oncologist kept going back and forth to not do the dissection and to do it. Oncologist wanted it done, ent didn't want to cut me that much because of my age. 30 at the time! Didn't want to scar me too much. But I am glad I did the surgery the rt not so happy about the issues it caused. But my neck is not that bad honestly you can look at my pictures in the members albums not very noticeable for just being in December.

Thanks,

Pam C.

Hi Everyone, mom had her PEG fitted on wednesday, and by thursday night she was in extreme pain and has been in hospital since. they think she has an infection from it, and they are putting back her radio and chemo until next week, it just seems to go from one disaster to another at the minute, I dont think I can stand much more of it all.

Any advice if this is common?

Thanks guys.

Hi Oliver,

Neck dissection dilemmas - Another similarity in our experiences. Chaz was diagnosed with a biopsy of his neck node and then not given a neck dissection. when I started blogging here I sensed that most people had had them before RT. I started reading medical journals furiously and found that the benefits of neck dissections for patients with node involvement below N3 is highly contested.

The basic argument is that neck dissections have a minimal survival benefit for a small % of patients treated with agressive radio and chemo therapy versus high morbity for a large % who may have them unnecessarily. Many of the stats reported are biased as historically patients that have been given neck dissections are younger and better able to withstand major surgery.

The advent of PET/CT scans is heralded as a development that makes deferral of the decision possible. Although someargue that pet/ct is not accurate for identifying micro disease in lymph nodes.

It seems that more and more cancer centres are choosing to defer decisions about neck dissection for certain patients until seeing results of PET/CTscans 3 months after radiotherapy and then monitoring them carefully under a'wait and see policy' with salvage surgrey as an option if there was a neck recurrrence.

The question is whether that puts some patients at greater risk from distant mets or difficult post RT neck dissection surgery. The jury is still out and clinical trials ongoing. Let me know if you want me to send you articles and references - I have tried to capture complex arguments in a few sentences and have certainly not done them justice.

Chaz waited 3 months and got a clear scn and then elected not to have a neck dissection - he seems to have made a quick recovery from treatment but i wonder whether he made the right decision.

Best,

Cathy

Hey Cathy,

Very interesting reading. The trouble I have found with the hospital is the lack of clear info, so I would b very greatful if you could send me the articles. And my mom loves reading all about it.

She was kept in the hospital today, and they have decidd to delay her treatment until next week, which is concerning me. They say they cant give her the chemo until they have then infection under control and her temp down.

Its just worrying me the longer it goes on the less likly the treatment is to work.

I had a bad day today myself. I just feel like where will it all end. Its lik a nightmare that I just want to wake from. And coming home to the empty house is horrid..I miss my mam lol!

Oli

Hi Oli,

SO sorry to hear about your worries and very much understand how you feel. It is a long and emotional process and to be honest you are going to both have a tough time during radiotherapy, but many people who have posted here have got through it and recovered well.

Re delays - try not to worry too much. I think their decision to delay chemo is very wise. You could push and ask why they cant start radiotherapy - in our hospital they wheel people down from wards for the 15 minutes or so it takes. One of the reasons they may have elected not to a ND before radiotherapy is possible delay it might cause because of recovery time and the possibility of infection. Our oncologist said they needed to get on and treat the primary with radiation asap.

Here are some references and abstracts - obviously a decision not to have a ND post treatment would be based on your confidence about how thorough follow up would be and how good radiologists are. Information about scans are often presented as an objective measure, in reality the competence and diligence of the radiologist and the particular standards that are used as a cut off for suspicious nodes and SUV take up in PET scans etc play a role in results. As PET is evolving as a technology, these are not yet standard in the UK.

So I think it is worth asking lots of difficult questions once you have had a read. I have found clinicians really helpful - once they realised that I had been doing a fair bit of reading, they did seem to take me seriously, even when I had a very basic grasp of the subject matter.

I haven’t managed to find the main article I wanted to send you which outlines the debate but in the meantime here are a couple of abstracts etc.


1) http://www.curehunter.com/public/pubmed17921898.do


2) Postradiotherapy Neck Dissection for Lymph Node–Positive Head and Neck Cancer: The Use of Computed Tomography to Manage the Neck
Stanley L. Liauw, Anthony A. Mancuso, Robert J. Amdur, Christopher G. Morris, Douglas B. Villaret, John W. Werning, William M. Mendenhall

From the Departments of Radiation Oncology, Radiology, and Otolaryngology, University of Florida College of Medicine, Gainesville, FL

Address reprint requests to William M. Mendenhall, MD, Department of Radiation Oncology, University of Florida Health Science Center, P.O. Box 100385, Gainesville, FL 32610-0385; e-mail: mendewil@shands.ufl.edu

PURPOSE: To determine how to use node response on computed tomography (CT) to indicate the need for neck dissection.

PATIENTS AND METHODS: Five hundred fifty patients with lymph node–positive head and neck cancer were treated between 1990 and 2002 with radiotherapy (RT) at a median dose of 74.4 Gy; 24% of these patients (n = 133) were treated with chemotherapy. Three hundred forty-one patients (62%) underwent planned post-RT neck dissection. Physical examination and contrast-enhanced CT were performed 30 days after completion of RT. CT images were reviewed in 211 patients for lymph node size (largest axial dimension) and presence of a focal abnormality (lucency, enhancement, or calcification). By correlating post-RT CT to neck dissection pathology, criteria associated with a low likelihood of residual disease were identified. A subset of patients who fit these criteria of radiographic response who did not undergo post-RT neck dissection was observed for recurrence.

RESULTS: Radiographic complete response (rCR) was defined as the absence of any large (> 1.5 cm) or focally abnormal lymph node. Correlation of response with neck dissection pathology indicated a negative predictive value of 77% for complete clinical response and 94% for rCR. In 32 patients (median follow-up time, 3.2 years) with rCR who did not undergo post-RT neck dissection, the 5-year ultimate neck control rate (100%) and cause-specific survival rate (72%) were not significantly different from the rates of patients with a negative post-RT neck dissection.

CONCLUSION: Patients with rCR 4 weeks after RT can be spared from a post-RT neck dissection regardless of initial node stage.

Hi Oli,

so sorry to hear about your mum. We have been going through the same thing this year with my mum who is 78 yrs old, she has had an operation for tongue cancer at end June this year where they removed three quarter of her tongue where the tumour was growing, did skin graft from her leg to make a 'flap' where they reconstruct her tongue, removed all her lymph glands and part of her bottom jaw.

She has recovered very well after all this operation and it is only 3 months ago, but you ask about peg tubes and infection and is this common, in my mums case she has had more trouble with the peg tube than the operation. Her peg has been leaking for weeks now and acid burning her skin, and obviously it is her main source of food and nutrition and medication.

She has been back in hospital for 10 days just come out monday this week, had to have the peg tube removed as it was still constantly leaking even after giving her stomach a break, we think her body rejected the peg. She is now fitted with a ng nasal tube which, although you can obviously see, my mum is happier with as she did not like the peg tube. This only happens in minority of cases, and they think because my mum suffers with arthritis and osteoporrossis she takes prednisolone steroid which thins the skin and they think this is the reason for the rejection.

I panicked a bit at first, until I spoke to mums gastric nurse, because of her feeding, anyway, she is now on feeding pump overnight whilst asleep, and up to now seems to be working, until the next setback. Everyone is different, and your mum will probably be ok when the peg tube settles down, my mum was in lot of discomfort in June when she had hers fitted, then it came ok and after her operation, there were a lot of people feeding her in hospital after they took her of the pump.

I have been in the same situation you are in now, you think the whole world is against you, sick with worry, I still get really bad days and weeks especially when everything goes wrong.
I also have the added pressure of having my dad ill, he suffers with alzheimers disease, which is really distressing to see, sometimes worse than my mum, because mum is on the mend, dad will never get better, in fact he is worse, since mum illness because obviously watching the woman you love facing death or operation is too much for anyone to bear, let alone, if you depend on her as your total carer and wife.

Life has to get better doesnt it?
Take care and just be there for support for your mum, she will be the strong one, my mum gives me strength, shes a fighter.

Shirley

Hi Oli

I cannot give you any information but I send my heartfelt good wishes and support.

Please try to relax, your Mam will feel your pain and that will not help her.

Come here if you want relief from the strain, we will understand.

Waspy xx

Hi everyone just a quick update, mom was discharged today from hospital for her to go to the Cancer centre in Birmingham to begin the Radio.

But the mask did not fit because she has lost weight, so the have had to remake so another weeks delay.

mom has had really bad anxiety today with the mask, she hates it, does anyone have any tips on keeping her calm? Was thinking of asking th GP for some sedation.

Hope everyones well.
Oli

Hi Oli
thats good news,and its not unusual for masks to have to be remade weight loss is a major issue with this damn disease.Anxiety about the mask can be alleviated with a mild anti anxiety medication which a lot of people find very helpful.