bad prognosis

flojo · New User Joined: 23 Oct 2006 Posts: 2 Location: Melbourne

It turns out I have melanoma from one end to the other and it is aggressive. I have not told anyone yet and just don't know how to do this or if I should? I think I will tell husband tonight. But my brother called to confirm Christmas plans and I just couldn't face making plans and I am not sure I want to tell extended family. As for work as far as they're concerned I'm having treatment for endometriosis but I think I can't keep working for much longer. We have just started building a house and I nearly called the builder to say stop today. I don't know how long I have the dr seems to think less than months because of the rapid change in just one week. I have no idea what to do with my daughter who is eight. I am 28 by the way. Changing topic a little bit has anyone got a good remedy for having weird taste in the mouth, it is driving me crazy, it tastes like Eno or Bex or whatever and used to be just sometimes but now it has persisted for 3 days. I've been really positive and graceful so far but today I am just lost.

taz · Regular Joined: 31 Oct 2006 Posts: 12

Im really sorry to hear of your diagnosis Flojo, I read your original story and wondered how you were doing. Unfortunately its not the news you and I hoped for. Its always difficult who to tell about cancer and when. All I can advise is tell who you are comfortable with. My mum faced this issue when she was diagnosed with cancer - and we found that support came from the most unlikely places, my mum was adamant she didnt want to be gushed over or treated like an invalid, nevertheless there were friends who proved invaluable doing some of the daily tasks like babysitting, shopping, cooking and cleaning etc. There are some wonderful people both here and at other mel forums who not only understand how you feel but have faced similar situations and may be able to offer support and advice.

In terms of your diagnosis I know its really difficult to take all the details in from your doctor especially when your mind is in such a turmoil and shock. From your description of your healthcare it doesnt seem that you are receiving much emotional or holistic support, and even in advanced stages there is much that can be done to improve quality of life.

I assume from your description you have been diagnosed as Stage 4 - and your doctor has quoted the much given statistics for stage 4 survival - however remember you are not a statistic! There is a lady on another forum who has just celebrated her 10th anniversary of being diagnosed stage 4 and had been given just 3 months to live. She is still alive and doing well.

Incidentally I dont have any ideas on the strange taste in your mouth but the National Cancer Society posts the following guidelines for melanoma patients experiencing change in taste:

[b]Tips to help make food taste better
Use plastic utensils. Avoid metal utensils and silverware.
Choose and prepare foods that look and smell good to you.
If red meat (such as beef) tastes or smells strange, switch to chicken, turkey, fish, eggs, or dairy products that do not have a strong smell.
Help the flavor of meat, chicken, or fish by marinating it in sweet fruit juices, Italian dressing, or sweet-and-sour sauce.
Try using small amounts of flavorful seasonings such as basil, oregano, or rosemary.
Try tart foods such as oranges or lemonade that may have more taste. A tart lemon custard might taste good and will also provide needed protein and calories. (Do not try this if you have a sore mouth or throat.)
Serve foods at room temperature.
Try using bacon, ham, or onion to add flavor to vegetables.
Stop eating foods that cause an unpleasant taste.
Visit your dentist to rule out dental problems that may affect the taste or smell of food.
Ask your dentist about special mouthwashes and good mouth care. [/b]

I hope this helps and wish you all the very best for the journey ahead, if you need to chat, vent or anything else dont hesitate to PM me.

flojo · New User Joined: 23 Oct 2006 Posts: 2 Location: Melbourne

Thanks Taz, I appreciate your support and the trouble you went to to find that info from the National Cancer Council. I have got a couple of 2nd opinions since, one dr. claimed because he had practiced in New Zealand for last 20yrs he new all there is to know about skin cancer, turned out he knew very little, but he was very keen to make me a regular client for $94 aussie dollars a visit, ok he wasn't too bad but I don't think any doc should pretend to be something they are not. Did I mention he started by saying you don't get melanoma anywhere not sun-kissed but back-peddled very fast when he saw my results. And the other 2nd opinion came from an excellent gynaecologist who instantly sent me for a chest x-ray, heart function tests and has booked me in for some surgery in (I couldn't believe it!) 2 weeks time. My lungs are not perfectly clear but much better than was expected however still very short of breath at times. I'm feeling a million times more positive than at my last post. Where did you read about the woman who is a ten year survivor of Stage IV, I would love to know?

taz · Regular Joined: 31 Oct 2006 Posts: 12

Hi again

Im so glad you are feeling more positive.

Heres the link to the story about the lady I mentioned http://www.mpip.org/bb/shtml/358577.shtml I got the prognosis a little wrong - I said three months and the docs had actually given her 6-9 months but she has just celebrated her 10 year milestone.

And shes not alone - on that site there are several long term survivors of Stage 4!

Here are some links to positive stories about melanoma which you may find handy:
http://www.hometownsource.com/2005/may/16thurmes.html
http://www.newsoftheworld.co.uk/story_pages/news/news3.shtml
http://search.bbc.co.uk/cgi-bin/search/results.pl?tab=all&go=homepage&q=melanoma&scope=all ( on the top right there are two videos about the successful implementation of the cancer vaccine in two men)

Also the docs are having some great successes with the new melanoma vaccine as mentioned in the news of the world article. Ask your doctor whether you would be suitable for a clinical trial.

Also a great site for anyone dealing with any type of cancer is Dr Lams site : http://www.drlam.com/A3R_brief_in_doc_format/natural_medicine_and_cancer.cfm

Also at the risk of inducing the moderators wrath, run a google search for cansema tonic. Its based on a native american remedy and some people have reported good results. I know theres a lot of quackery out there and people trying to make money out of other peoples suffering - and that infuriates me, but my philosophy has always been there has to be a remedy out there somewhere for everything, and some people have reported results with the product.

Wishing you all the best, sending you love and support

Taz

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