Lung Cancer and Chronic Lyphocytic Leukemia

Dear Kelly Lyn

I was so sorry to read your posting, and how distressed you must be for your father.

Can you tell us what kind of cancer he has been diagnosed with? I do know from my husband's cancer (kidney cancer) that late stage very often shows mets (metastatic tumours that have spread from the original, primary tumour - which tends to defind what kind of cancer it is, eg kidney, bowel, etc) in the brain, lungs, lymph nodes, liver and bones, and though no one would be rash enough to say 'curable' (!!!!), that does NOT mean the same thing as 'untreatable'.

IF the mets ARE treatable (and that will depend, I believe, very largely on what kind of primary cancer he has), then an extension of life is possible. Just how much extension is a tricky thing for even the doctors to say!

The 'treatability' and therefore the response to treatment, and therefore the amount of life extension possible, can also be affected by the overall condition of the patient, as in how 'ill' they are (eg, confined to bed, in pain, other complications,), and, also, their age.

I believe (though please don't take this as gospel!) there ARE a couple of cancers which ARE considered 'curable' even when they have metastasied (sp?!) - one famous example is the tour de France cyclist, Lance Amstrong, who had testicular cancer in his twenties, which had spread definitely to his lungs and I think elsewhere, and he was cured.

There is, both in the UK and very much so in the USA, a wealth of information available on the Internet on just about every type of cancer you can think of, including 'official' information from organisations such as this one, Backup, and government health sites, and, perhaps even more usefully in some respects, from individual patients who are experiencing what your father is experiencing.(I can give you some links if you want.)

But the first step is to identify the type of cancer - although I believe that sometimes this is not actually clinically possible, and I believe it is sometimes also possible to have two different types of primary cancer present in a single person (which I didn't know until I read this site!)

(PS the 'mets' will be the same type of cancer cell as the original, primary tumour - eg, my husband has mets in his lungs, which are actually kidney cancer cells, NOT lung cancer cells!)(I didn't know that either before he was diagnosed and you suddenly do an 'instant learning' course in the ways and means of cancer!!)

All the very, very best to you and your father at this extremely distressing time.

If this is your first visit here, you will find a strong, supportive community, that can be of immense psychological and practical help to you and your family.

Best wishes, Julie

thanks for your posting. I learn more about Cancer every day. We still don't know where the cancer started - he had a biopsy but still no results which is frustrating. We were told that because it has metastatic tumors that there is no hope. He is currently at home and literally disappearing before our eyes (losing weight) and both my brother and I don't live in town - we live hundreds of miles away which is harder for us as well.

I am hoping to find out just how this is going to progress - we don't want to see him suffer.

any links you can send me Julie would be a huge help. I live in Canada.

I look forward to hearing from you soon

It must be exceptionally frustrating not knowing where the cancer is originating, and that makes the choice of drug therapy hard becasue so many of the drugs are geared towards a particular cancer.

I wonder if you might find it useful to consult one of the big USA cancer centres, such as MD Anderson in Houston,

http://www.mdanderson.org/

where the cumulative expertise may be in 'unidentified cancers' may give you the information you need?????

(Speaking of which, I've just searched MD Anderson site on 'unknown cancer' and come up with this! May be useful??

http://www.cancerwise.org/july_2004/display.cfm?id=EFB4E40B-CE18-4271-89...

Apparently it is a recognised phenomenon that some cancers do not appear to have a primary - CUP - cancer of unknown primary -

Do check out this site - it says MDA treats abouyt 250 patients a year with CUP! (One theory is that the original primary was so small, the patient's immune system destroyed it, but not before it had 'seeded' itself into mets elswhere....)

I quote this brief extract from the article, which I hope it is OK to do here:

"Each CUP patient has a different prognosis, although all have a life-threatening prognosis because their cancer has spread, says Abbruzzese. “Even though the average survival of about a year for these patients is discouraging, there are many success stories,” he says. “There are patients that have been cured when a diagnosis has been made, and the cancer has been treated aggressively, and some have lived well beyond five years.”

****

Of course, it might be that there IS a definite primary for your father, but they haven't identified it yet.

Also, I believe that in the USA there is an organisation called Cancer Treatment Centers of America

http://www.cancercenter.com/

which take a different, more complementary approach to cancer, but which, again, may just have some clues about how to id a particular cancer that may be more comprehensive than the hospital you are currently using.

I would also see if its possible to check out where the centres of excellence for cancer treatment are in Canada, and get your father referred there - in the UK, for example, I know that some patients specificually choose to be treated at one of the country's best cancer hospitals, the Royal Marsden, even though they don't live nearby.

MB address for the American Cancer Society

http://www.cancer.org/asp/messageBoards/msg_global.asp?navToScreen=msg_0...

MB address for Cancer Compass
http://www.cancercompass.com/cancer-news.htm

Don't just be confined to these - there is a HUGE amount of information on cancer and treatments on the Internet, and one problem is simply sifting through all of it.

Also, I've just thought - I'm sure there is a patient here who has a cancer of unknown origin, but I can't say definitely? Perhaps someone else knows??

You could post a new thread saying 'Unknown primary - anyone else here?' or something like that.

Hope some of what I've posted is useful, even if only for information and 'signposts forward'.

All the very best to you, Julie.

Julie

Thanks so much for all the links. I will be referring to them throughout the day. I would like to clarify things though, perhaps I haven't been clear. My dad was diagnosed 2 years ago with Chronic lymphocytic leukemia and in January of this year started Chemo for that Cancer. In June, after a routine CT Scan they found this Secondary Cancer in his bones, his brain and various other places - they gave him 10 days of Radiation and that is all they can do. We don't know where the Secondary cancer has originated and thus our frustration.

I hope this makes more sense and perhaps you can help.

Kelly

Kelly,

Can I just pass on my very best wishes to you, dad and family - clearly the situation you all find yourselves facing is extremely distressing but it also seems that you are all fighters capable of questioning and demanding information.

THe links that Julie has placed on her replies are not only of benefit to you but to many on this site and there are certainly links that I have never come across - so a big thanks to you Julie - you are a real help to many.

Kelly my own story (and other threads) can be accessed via my profile page (use the more button at the bottom of the profile page) suffice it to say that after being told nothing they can do and given 3 -6 months in early 2006 I am still here and to be honest feeling pretty good - despite numerous spreads from a minute primary eventually found to be deep at the back underside of the tongue.

Yes I have been to the pearly gates a few times but just didn't go through - it's amazing what is possible if you have the determination to gain as much as you can out of every day, yes accept what might happen, but rather than seek out time scales aim to achieve something everyday and never be afraid of sitting down and discussing things openly - worry anger etc saps energy and will-power from you and reduces the ability of the individual to fight.

My thoughts are with you and the family,

Matt

Hi,
Really sorry to hear about your dad..

My dad was diagnosed in may with small cell lung cancer and given 6 months as it had spread to his liver, spine, lymph nodes, bones, etc

he was given chemo about 6 or maybe 8 times before he started collapsing and it was a tumor pressing on his spine so they gave him a big shot of radiography after telling him he had 4 - 6 weeks as chemo didnt work, just to help him keep control of bladder etc.. that was end of june.

It is the worst thing in the world watching your dad go through this and I really hope your dad has more of a fighting chance

Get in touch if you want to but its nice to know were not the only ones...