That's good to hear.....I would hate to think anyone would consider potentially exploiting grieving families in situations like ours!

I have not responded to that email yet and may just do so to see a bit more in detail of what specifically they are asking for, then obviously, I'll re-post with what I found out.

I am always willing to lend a hand to someone in need, but the dollar amount addressed to me was "staggering" (to say the least) and anyone in such a situation of inheritance would have already been through an estate issue, to which a lawyer or family representative could have pointed them to the proper foundations, churches, and institutions instead of reaching out to a single member of this site.

On the other hand; maybe I made some sort of impression to a confused and reserve individual.....as much as I would want to help anyone, outside of my own family situation at the moment, this foundation (as example) is a good place to start in regards to any charitable contribution!

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(19 replies, posted in Introductions!)

Thanks again for the replies.....I read them all and it makes for good relevancy to understand others situations, in comparison to my fathers, even though I typically remind myself that each cancer patient has an individual set of parameters of their situation.

It's just good to know and hope that each of ours is the best it can be at any given time!

Just a note of discussion in regards to possible "spam" mail:

I am curious to know if any of the discussion board members on this particular site, have received personal email(s) from individuals claiming to be searching for "honest and caring people to distribute money from inheritances, for God's work". . . . .if so, please contact me personally and let me know, or leave a reply below regarding such.

I have received such email in "content" to which my email address was forwarded such information. . . . .the concern I have is that the "content" may have been sent to other members and is potentially an internet hoax.

Thank you.

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(21 replies, posted in Introductions!)

Stephanie;

After reading the posts to your original thread, it's easy to see that all responders are concerned for you and your Mother!  As am I.....

One particular item caught my attention in that your Mother has recently had stints to reduce "blockage" and is in pain.  One particular treatment of consideration that's worth discussing with your Mother's physicians is the usage of PDT (Photo Dynamic Therapy).

I don't have the link handy at the moment, but if you browse my introduction from yesterday you will find a link of PDT, to which our family recently learned about in usage with stints to not only stop the progression of CC but control the pain as well.

It is a procedure I recently discussed with our doctors and all are in agreement we will utilize when my fathers no longer able to tolerate the Gemzar he's receiving or the cancer regains momentum.

I am truly sorry to learn about your Mother's situation and recall others similiar to hers where the cancer returned and/or spread from unknown sites.

I also agree it's important to maintain an aggressive approach as well, with all considerations towards your Mother and what her wishes are going forward.

The concept of "Faith" is important too.....and will pray for you and your Mother, as I do of others.

I can certainly appreciate your efforts in doing what you can for your Mother, just remember to not forget about yourself when you can get a break.....I know the feeling and feel guilty even if I am briefly away from our situation, but you will need your own space and time to continue being "strong" for her and your family.

Please feel free to contact me if you need someone to talk with or simply "listen".....

Rob

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(19 replies, posted in Introductions!)

Thank you.....I appeciate the support and sincereness of your responses, more than you might realize!

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(19 replies, posted in Introductions!)

For those that wrote and are curious as to our fathers situation, going forward.....it's good news.

The CT showed that the cancer cells/ sites have not grown or spread further.....yet, the largest mass remains identical in size @ 8 x 16 cm.

This is good news because the Gemzar is working and obviously giving us more time with our father.

His blood work came back good on many levels and even the "clotting" issue appears to also be under control for the time being.


We're pleased but also realize what's coming.....even though this is probably the best we could hope for in "quality of life" and know his situation could be worse, we're thankful.

The "itching" was determined to be a reaction to the CT contrast and will decide whether to 'pre-medicate' him prior to the next CT.

Of course, this all hinges on how he tolerates the continued Gemzar treatments and this being his fifth series of "3 weeks on and 1 week off".

He tolerated the first treatment of the fifth series well the first day after; however, he's feeling it this morning and is stronger than before.  We're associating this to a "build-up", as it's been the course all along.....just will have to see how the rest of the week goes.

One option in suggestion is a greater dosage of Gemzar twice a month.....in essence, he is receiving a 175ml/ 1568mg dosage now (80% strength) 3x's a month.  They feel he could tolerate a heavier dosage of 100% strength just two weeks a month giving him two weeks "off"!!! 

We like that idea and was what I was looking for, as noted above.....

In addition, when PDT was brought into the conversation, the doctors acknowledged this is available and ideally for my father in controlling the pain once the cancer regains momentum and resists the Gemzar.

We are told his CC is known to eventually resist the Gemzar.....so the PDT timing would be a form of "maintenance" w/o stints, at the end of the Gemzar treatments.


It all clears alot of "unknowns" for us and is gradually eliminating the "what-ifs".....at least we know he is receiving quality care and hope to enjoy our remaining days with him, without him suffering.


In regards to the "Tarceva".....our doctors did confirm that it can be effectively utilized with Gemzar (as I read it could be from the above responses), but essentially that patient would have to have sufficient liver function in order to be able to receive such a medication, because of the side effects.


One final note.....I just sincerely want to thank all of you who replied and pray for the best in your situations.  Please feel free to contact me individually, as some of you have.

God bless

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(19 replies, posted in Introductions!)

Just to note after reading the discussion(s) regarding PDT.....I happened to notice one responder quoting that their family member was receiving a combination of Gemcitabine and the product "Tarceva".

As I am sure a physician would be quick to inform those that inquire.....it wasn't long before I learned that the drug Tarceva is particularly prescribed to target "lung" and "pancreatic" cancer, with specific side effect notations from the drug manufacturer in regards to effects directly upon the liver.

Certainly appeared to be a "Red-Flag" in relation to CC.....

I intend to discuss all the alternatives available to my father today, with our physician and her assistants.  So for those of you interested in the results of that discussion, I will post in 'reply' again later tonight or tomorrow.

The PDT alternative has my curiousity peaked and btw.....I did a bit of "brushing-up" on knowing how doctors prefer to be in discussion from a book titled "How Doctors Think", by Jerome Goopman, MD.

Helps to not offend them, especially when we have been extremely satisfied with The Wilmont Center, as a whole.....through both my brothers and fathers situations!

None the less.....I'm hoping for a more 'pallitive' approach, going forward.

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(19 replies, posted in Introductions!)

To all who have responded:

Thank you all for writing and sincerely appreciate your responses.....each have brought a bit of perspective and hope! 

It's what I was looking for and pray that each of you, in your own unique circumstances, are able to cope and obtain some form of "quality of life"!

I'm not always online and will occasionally follow-up on responses to this thread but if you wish to contact me directly.....please do so at the attached email address.

Again.....thank you all for your kind words and interest in our situation!

God Bless

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(19 replies, posted in Introductions!)

Thank you Darla!

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(19 replies, posted in Introductions!)

Lainy.....thank you for replying and appreciate what you and your family have been through.

There never seems to be a "great" decision to make, yet in what you've briefly described in regards to your husbands situation and type of CC.....you chose what you felt was best.

I think my father has a different type (of sorts) of CC because the "Gemzar" prescribed for him was specific in "maintenance" in giving him a "quality of life" vs. no chemo at all, being that radiation and surgery were not an option in his "Stage-4" evaluations.

You are right.....it's a valuable 'topic' and hope one of you has or is facing a similiar situation to which the chemo is beginning to take "good" days away and if a 'reduction' of Gemzar is possible.

Thank you again for your response and god bless.

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(19 replies, posted in Introductions!)

Greetings!

My name is Rob and have just joined the discussion board in hopes of finding relivant conversation in regards to my fathers situation.

In September of 2008, my father was diagnosed with "Stage IV" Intrahepatic Cholangiocarcinoma; to which a 9 x22 centimeter cancerous mass was discovered in his liver and 3 smaller masses in other regions in his 9th rib, spleen, and sternum.

We, as a family, are very pleased with the quality of care he is receiving at the James Wilmont Cancer Center in Rochester, New York and have been in a "quality of life" treatment program prescribed by Supria Gupta Mohile for approximately 3 months now.

I must admit that I am reminded daily of "personally" cancer affects the lives of the patients and their families.....the hope is through each of our situations that some resemblence of a "quality of life" can be achieved and strongly recommend Dr. Supria Mohile for just such in the care of the elderly.

There hasn't been a day gone by since our first introduction to her and her staff that the proper attention has been placed in the welfare and care of our father.  A 79-year old gentleman who is simply "dealing" with the 'days' remaining of a good life.....they, at Wilmont, are simply making his last 'days' the best they can be.

He is about to begin his fifth series of treatment of Gemcitibine (Gemzar), to which he is fortunately not faced with any of the potential side-effects we were warned about and urged to keep them abreast of.  However, he is beginning to show signs of the "toll" each series is bringing upon him as it now takes him a good 4 days to recover and feel like getting out of bed. 

It's been a gradual build-up through each series of treatment and lately, we have addressed 'blood-clotting' issues.

On the positive side, again, he has not had any major side-effects.....yet I am beginning to wonder about his remaining days in regards to the "quality of life."

We meet with the doctors again on Monday to review his recent CAT-scan.....the last of such reveiled that the 9 x22 centimeter mass in the liver had been reduced to 8 x 16 centimeters, but all other sites were still prevelant and he will remain in "Stage-4".

My question:  "If the prognosis isn't going to change that he had 4-6 months beginning in October of 2008 and we are concerned about his quality of life.....the treatments have 'maintained' him through the holidays, but are gradually taking away any enjoyability between treatments; then do we reduce the Chemo-treatment to give him a few days a week of anything but being in bed"???

Is that even possible??!!!


Of course I will ask the doctors on Monday, but maybe one or some of you have been through this in a similar or comparable situation.

I'm open to suggestion!


Thank you for any response or interest and look forward to chatting with any of you soon.....