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karenl

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Posts posted by karenl

    Any expertise with throat cancer?

    in NSCLC GROUP

    Posted

    Hi Kelly

    Well, I don't have any expertise with throat cancer at all, my only knowledge comes from my own mum having a tumour removed from her vocal chords twenty years ago. BUT, the attitude of your pulmonologist sounds totally bizarre to me. I don't imagine that the chemo regime would be the same as for lung cancer, or that (obviously) radiation to another body part would be of any use whatsoever! She may have been presuming that it is a metastasis of the lung cancer - but I don't think it is wise to presume that without doing biopsy. The ENT will be much more on the ball with regard to this development.

    On a brighter note, Mum had hers removed surgically, and never had any other treatment, and it was never an issue again. I hope that, if it IS cancer, the same is true for your Mom.

    Keep us posted,

    Karen

    Survivorship...

    in LC SURVIVORS

    Posted

    Dear Fay

    I am so sorry to read that the disease has returned, but am heartened by the tone of your post, which, as always, is full of strength and wisdom. I know that you will continue to wage this battle and I have no doubt that you will come out on top again.

    My love and best wishes to you,

    Karen

    You got the power! (and I'd like to borrow a little!)

    in MEMBER UPDATES

    Posted

    Leslie

    I hope you get the good news you deserve, and I know how disappointed I always felt when Mum's scans were 'stable'. However, now that we have been on the receiving end of the 'disease progression' scans, I can honestly say that 'stable' is a wonderful word, and I would cut off my right arm to be in that position now.....

    Thinking of you and hoping for the very best,

    Karen

    TARCEVA - is it working?

    in NSCLC GROUP

    Posted

    I think that Peggy is right in that the doctor means he will be able to tell by looking at Donna. I know that there is said to be a strong correlation between the facial rash and therapeutic response, and Mum's Oncologist told her that he had patients who didn't develop the rash until about 4 weeks after commencing treatment.....

    With regard to the confusion and disorientation, we have done alot of reading on this as Mum started to experience these symptoms several weeks ago. Among the things that it could be are hyperglycemia, hypercalcemia, urinary tract infection, brain mets/edema, hypoactive delirium, dehydration, faecal/urinary retention, or just part of the 'disease process'....have the doctors done some blood tests to check for metabolic imbalances? Mum's confusion has abated somewhat, but she was extremely confused and agitated a couple of weeks back, and we think that those episodes were due to a urinary tract infection.

    Practical things that you can do to help include having a clock and calender nearby so that she can check the time and date regularly. Try not to engage her too much when she is very tired, as we find Mum's confusion worse when she is fatigued. Make sure she is eating, drinking and sleeping well.

    We are struggling with all this ourselves, so are just making it up as we go along basically.....hope that things get easier for you soon - I know how hard it is.

    Karen

    Husband's Anger

    in CAREGIVER RESOURCE CENTER

    Posted

    Hello

    I'm sorry to hear things are so rough at the moment. I don't have any direct experience with what you are describing, but a couple of things come to mind....one, is whether your husband is taking steroids. My understanding is that these can cause this type of behaviour in some individuals. Another is whether he has had a head scan to rule out brain mets. Depending on the location of the mets, there can be resulting disorders in the personality of the patient.

    Of course, it could be something as simple as the stress of the diagnosis and treatments, but from your post, I gather that this is very out of character, so I would be more inclined to look at the first couple of options.

    Hope you find some answers soon, and that the situation can be easily remedied...

    Karen

    survival ?

    in NSCLC GROUP

    Posted

    I totally agree with what everyone is saying about ignoring the statistics, and that everyone is an individual, and will respond uniquely to the illness and its treatments.

    But, I think the point that really needs to be hammered home in this example is that the statistics refer to people living BEYOND 5 years. If the 5 year survival rate for lung cancer (all stages) is 15%, then that DOES NOT mean that those people ONLY survive for 5 years! It means they live AT LEAST 5 years, often many, many more. I think the confusion arising here is grammatical in nature. The main reasons the statisticians only follow cancer patients for 5 years, is that there is a presumption that if you have survived for 5 years, then it is likely that something other than your cancer will be responsible for your ultimate demise!!

    So, if your husband is stage 1, and stage 1 has a 5 year survival of, say, 60% (I don't know what the actual figure is), then, statistically, he has a 60% chance of still being here in 5 years time. And if he is still here in 5 years time, then the very strong likelihood is that he has beaten this cancer, and will be sticking around alot longer than that!

    Hope this helps,

    Karen

    I am bumming...

    in CAREGIVER RESOURCE CENTER

    Posted

    Hi Lori

    We are going through a similar thing with our Mum at the moment. Cognitive functioning can be affected by so many different variables, especially in a person with cancer. The doctors have not been able to determine yet just what is causing Mum's confusion/delerium.

    I know how hard it is to watch this happening....know that I am thinking of you and hoping things improve.

    Karen

    The 'h' word has entered our vocabulary

    in GENERAL

    Posted

    Hi Val

    We are at a similar point ourselves. Mum was discharged from hospital yesterday, and today hospice is coming to do an initial assessment to determine what assistance we require.

    I understand how you are feeling - its so hard to believe we are at this point.....but I am hopeful that we will see an improvement!

    Thinking of you,

    love Karen

    survival ?

    in NSCLC GROUP

    Posted

    Don is right. It's not that early stage lung cancer patients only survive for 5 years, its just that they stop tracking it after that time. My grandfather had lung cancer which was surgically removed when he was in his early 70's, and he died of unrelated illnesss at the age of 89. He would have been recorded in the statistics as being a 5 year survivor, because he was still alive after 5 years. You will find that there are many long term survivors of early stage lung cancer, so tell your husband to be hopeful!!

    Karen

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