irenea
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Hi Peter —
Like so many others, I feel as if I know you.
In my experience with DHMC (so far) I believe they are skilled and realistic — sometimes a hard combo to find in the “practice” of medicine.
Alll my good wishes to you.
Irene
Hi,
Wanted to add my own two cents on this very interesting topic.I have struggled with the issue of surgery — currently it is scheduled for next week. Because of location it will be extremely technicaly difficult, and the recovery nothing short of nightmarish. Like all of us, I also face the possibility that the surgery gets aborted in-process if they find that the tumor cannot be removed or that the cancer has spread.
I am one of the few who is absolutely asymptomatic (with the exception of a prlonged deep fatigue) and whose liver function, etc remains perfectly normal.
I have a very strong inclination to leave well enough alone, and do absolutely nothing — no surgery, no chemo — until I get hit with symptoms. This is, of course, the most awful kind of lottery. I know that even in the best outcome with surgery my life as I know it will effectively end.
However, i also realize that surgery is not even an option for most people by the time of diagnosis, and if I decline that rare opportunity I am, you might say, rejecting a chance at long life. But it could also be that the tumor — which is very lazy, it seems — could just hand out and do nothing for 20 years. I will never know.
It seems like these days, some providers are recommending a “do nothing” approach when people have reccurrence but no symptoms, with a “leave well enough alone” approach. I wonder if, in a few years, this will become the approach even for first-line, newly caught, asymptomatic tumors.
Irene
Hi Carol:
I think this is a great service you’ve provided here — a nice succinct summary of options.
I would also add that most not-for-profit hospitals do have special funds and you are right, you need to ask to apply — they do not advertise. But this was very helpful with my mom on some on-going medical matters several years ago becuase once she qualified for the hospital’s special fundning it was valid for a period of time (I think 18 months) so we didn’t need to go throgh the whole process again when she was briefly hospitalized again a few months later.
As in all things, you need to be a strong and insistent advocate.
Courage,
IreneHi Hollie:
Please tell Sophie we are all thinking of her.
I jsut want to echo what others have said — the chemo drugs are cumulative and as I recall she had a really tough time right from the start with the Xeloda.
The dose can be adjusted; there are also other meds and combnations to try. None of them are a thrill to take, but everyone is different and it is possible to react just awfully to one but tolerate another fairly well.
Irene
Hi Sophie —
I think this is a great letter. I am sure Oprah gets a lot of letters like this so who knows if they all get read, but it is very well done.
I might throw in one more paragraph and note that CC is one of what they call Orphan Diseases because it affects so relatively few people — that might give them an opprtunity to look at covering it from a perspective as one of several Orphan Diseases, rather than focusing on just this one.
It’s an excellent idea. Thank you for thinking of it.
Irene
Hi Joyce —
Just wanted to say I’ve kept up with yours and Butch’s progress on your blog. Certainly its been an awful and slow progress but there is progress, and I am so glad for your both!
Sounds like if anyone wants to to to UPMC you’re better off packing a lunch — they didn’t seem to want to feed poor Butch very much!
Sending all good thoughts!
Irene
Mr. Pibb?? Never heard of it! They do have Moxie up here in New Hampshire, which strikes me as good word for those fighting CC. But it is nasty stuff!
Anyway — I agree that I have often lamented having to end up with an Orphan Disease.
We’re never gonna be as popular as all those well-known cancers, but we can make our own statements. And to me, what better represents the fight (literally, for our lives) than the Tree of Life? This is a fairly well known symbol, but we should make it our own. Further, it works because it resembles the biliary tree.
Always thinkin’,
IreneHi Barbara Ann:
First, I am sorry that you and your family are going through this.
You haven’t given a ton of detail (like me, you probably get tired of telling the story over and over) and we know that CC takes a different course in different people.
Having said that though, I am not sure I would be as certain that your dad is as “endstage” as the doctor is indicatin, and if he is, he should be able to feel better than he is feeling. Is he being given adequate pain medication? Does he have stents to relieve bile problems or is that not an issue for him?
Depression, I am sure, is a problem for a lot of people here, and it seems to go hand in hand with the hopelessness around this disease.
You probably dont need more opinions to confirm what he has, but it may be helpful for your mom to seek other options in terms of treatment and in trying to get him into a better quality of life (most notably pain relief) for what time he does have.
I hope I am not offering information that is just simplistic — I do think he can certainly be made more comfortable, even if his time left is limited now.
Thinking of you,
IreneYou give us all hope, Nancy. Glad to hear your good news, and glad to hear you are nearing the end of the chemo regimen.
Irene
Hi Sophie:
So glad to see a post from you and it is wonderful that you are getting out, having fun, and making memories!
Queen Irene
Hi Sophie:
You haven’t posted in a few days. Hope you are doing okay and over the worst of your first course.
Thinking of you.
Irene
Hi Jeff:
Only 127 issues? I bet I can beat that!
Seriously — wishing and sending you all positive thoughts, and I can’t wait to hear your reports about the EFT.
Irene
Hi Rebecca —
I don’t have any specfic information for you, but many people on this site have been able to get these new and crazily expensive meds through Compassionate Use programs run by the drug companies. You can check the web site for the drug company; the American Cancer Society is also a good resource for navigating some of these systems and may have more detailed information about Compassionate Use programs.
Hope that helps.
Strength,
ireneHi Sophie —
I am afraid I have no sage advice to offer, but want you to know I am sending my best wishes. You and I have followed something of a similar course with this awful disease and I feel as if I know you.I think Jeff and others are absolutely right when they say you’ve got to treat the nausea before it sets in; easy for me to say.
PLease take good care.
Irene
Hi Jeff —
Wow — a lot more to think about!
When you say you went five years, do you mean five years after diagnosis with no surgery or chemo or radiation? That’s what I think you mean.
If so that’s stunning — and I think it says a lot — both about you (though anyone on this site knows when an amazing, inspiring, and funny fighter you are!) and the unpredictabilities of the disease.
I have one single tumor about 6 by 6 cm. It is essentially lying on top of hepatic vein/inferior vena cava and one other artery that is apparently rather important. If it were in any other location it would be sort of a no-brainer to do surgery and take it out, but the chance of not getting it all remains very high, the chance of killing me is high, the chance of post-op mortality is high, and the chance of recurrence is astronomical. ALso could be in at least one lymph node.
So I am advised to try chemo (will finally see an onco next week) in hopes of magically shrinking tumor and pulling it away from those pesky veins and arteries.
But I am completely asymptomatic and bloodwork is completely “normal.” Ca 19-9 is elevated but not stunningly (its 65) — so for me, it feels like committing to what will be the rest of my lifetme being unwell (from chemo to chemo to maybe horrible surgery back to chemo etc) and I wonder if there isn’t an argument to delay any treatment until we see growth and ferocity in the tumor.
Strength!
Irene
