Cicatricial Pemphigoid.
From: Glen A. RITCHIE (Not_So_Wonderful_Spam_at_Despammified.com)
Date: 01/29/05
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Date: Sat, 29 Jan 2005 00:05:41 -0500
Hello all,
I recently lost my long-time friend, Bob
- the man who was my partner for 14 years - to cicatricial pemphigoid, which
is apparently a form of cancer of the mucous membranes.
According to his family, he first showed signs of this disease sometime
around Christmas 2003.
Evidently, my friend didn't want to see very many people including his own
family, because of the way the disease affected his appearance.
Why I say this, is because it was around that time that I felt as though he
was pushing me away from him.
We were no longer in contact at all after his 71st birthday on February
23rd, 2004.
It wasn't until October 14th, 2004 that I actually learned that he'd passed
away on July 28th, 2004.
Aside from being absolutely devastated over my loss, I also deeply regret
not having stayed in touch with him, and as such, I never got the chance to
visit him or take care of him when he was sick, let alone to even say
goodbye.
My questions are:
(1) Is this form of cancer very rare?
(2) Would this particular type of cancer be caused or aggravated by
lifestyle factors or traumatic events?
(3) Are certain groups more susceptible to this disease than others (e.g.,
age, ethnicity, gender)?
(4) Can a patient live relatively comfortably or independently up to a
point, considering the condition?
(5) Is much pain involved, or is there any way to ease the suffering of a
patient with this disease (e.g., drugs, surgery, therapy)?
(6) Do patients of this disease tend to experience more pain than any other
type of cancer, especially in view of the fact that it is a disease which is
so difficult to treat and respond to treatment?
(7) Can this disease induce secondary conditions, such as diabetes and
high-blood pressure?
(8) What is the usual duration of this disease?
(9) Would a patient with this disease be informed at the outset that they
are suffering from a terminal illness?
(10) Does this disease always end with the loss of the patient, or there
cases of known survivors?
Sorry if these questions seem morbid, but I feel that I need to know that my
friend received the best care available.
Either way, I would greatly appreciate receiving whatever information you
may be able to provide.
Also, a referral to community resources which specialise in counselling
family members and friends of people who've suffered from this disease could
be helpful.
Although I've reached out to resources which I posted earlier, they were
unable to address the particular issues I have surrounding this disease.
Thank you in advance for your support.
Sincerely,
Glen A. RITCHIE
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