amybusby

I had alot of trouble with inf and the effects varied from permanent to improved to time, to went away over time.  I have some cognitive problems like aphasia (tip of tongue syndrome), sort of drifting off in the middle of sentences, and short term memory loss.  I lost most thyroid function and have to take synthetic thyroid.  The fatigue stayed around a long time but gradually got better – until recently when I started other treatments what brought it back!  The Ritalin I take for fatigue seems to help a bit with the "fogginess" I still have.

Most people who have a hard time inf find that their problems lesson over time out from the inf.

Love,

Amy

I had alot of trouble with inf and the effects varied from permanent to improved to time, to went away over time.  I have some cognitive problems like aphasia (tip of tongue syndrome), sort of drifting off in the middle of sentences, and short term memory loss.  I lost most thyroid function and have to take synthetic thyroid.  The fatigue stayed around a long time but gradually got better – until recently when I started other treatments what brought it back!  The Ritalin I take for fatigue seems to help a bit with the "fogginess" I still have.

Most people who have a hard time inf find that their problems lesson over time out from the inf.

Love,

Amy

Cypress Inn Cheese Pie; Tuscaloose, AL  *I have the recipie and it is just as good at home & very simple to make.

I also make a fantastic Coconut Cake from a Paula Deen cookbook.  This is something I don't make anymore because it is NOT simple to make, at least based on my standards.  And since I'm the only one in the family that eats cc, I end up eating the whole damn thing.

runner up – Emeril's Banana Cream Pie dessert from his restaurant in Orlando

Cypress Inn Cheese Pie; Tuscaloose, AL  *I have the recipie and it is just as good at home & very simple to make.

I also make a fantastic Coconut Cake from a Paula Deen cookbook.  This is something I don't make anymore because it is NOT simple to make, at least based on my standards.  And since I'm the only one in the family that eats cc, I end up eating the whole damn thing.

runner up – Emeril's Banana Cream Pie dessert from his restaurant in Orlando

Oh Lori I am so so sorry.  I hope that you know that you did all that you could for him and there is no way he could have hoped to have had a better advocate.  You went far beyond the call of friendship.  I am sorry you lost your friend.  Love, Amy

Oh Lori I am so so sorry.  I hope that you know that you did all that you could for him and there is no way he could have hoped to have had a better advocate.  You went far beyond the call of friendship.  I am sorry you lost your friend.  Love, Amy

It would depend on the trial you wanted to try next.  Different trial designs have different exclusions.  Some exclude certain prior treatments entirely and some require a "wash out" period based on how long the previous treatment can stay in your system.

Hope this helps!

Amy

It would depend on the trial you wanted to try next.  Different trial designs have different exclusions.  Some exclude certain prior treatments entirely and some require a "wash out" period based on how long the previous treatment can stay in your system.

Hope this helps!

Amy

I too would be interested in responses from those who have tried ipi in the past.  I don't know that it is really apples and oranges since many of the early anti-CTLA / MDX trials were pre-cursers (sp?) to the current BMS ipilumimab drug.  Many of those trials involved other elements as well.

But regardless I'd love to hear some personal stories of their experience (side effects, etc) and responses.  Off the top of my head I can think of various stories from several board members.

I may well be starting this soon and would welcome some 1st or 2nd hand experiences!

Thanks,

Amy

I too would be interested in responses from those who have tried ipi in the past.  I don't know that it is really apples and oranges since many of the early anti-CTLA / MDX trials were pre-cursers (sp?) to the current BMS ipilumimab drug.  Many of those trials involved other elements as well.

But regardless I'd love to hear some personal stories of their experience (side effects, etc) and responses.  Off the top of my head I can think of various stories from several board members.

I may well be starting this soon and would welcome some 1st or 2nd hand experiences!

Thanks,

Amy

Still no targeted therapy openings and once I have one I'll have to get exceptions to get in since I have so many exclusions.  Also still waiting on wait lists for multiple places for the ipi comp. use program.  So first up to bat gets the pleasure of taking a swing at my mel.

Tired & in pain but mostly well managed by pain meds.  Hope to start radiation treatment on a few skeletal mets so hopefully the pain problem will decrease.

Amy

Still no targeted therapy openings and once I have one I'll have to get exceptions to get in since I have so many exclusions.  Also still waiting on wait lists for multiple places for the ipi comp. use program.  So first up to bat gets the pleasure of taking a swing at my mel.

Tired & in pain but mostly well managed by pain meds.  Hope to start radiation treatment on a few skeletal mets so hopefully the pain problem will decrease.

Amy

I definitely think the procedures for FDA approval are out dated and the new targeted therapies are such a breakthrough that they need to determine more efficient methods for proving effictiveness and / or survival benefit.  And obviously I think the standard for terminally ill patients should be dramatically different than that for drugs designed to be "life enhancing" or to manage chronic illness.

Treatments for terminally ill patients should be mined for data through Lazarus Effect studies – how long did this drug keep a person at death's door alive and in what condition.

A 10 month life extension during which you're suffereing, often hoispitalized, losing cognitive function ,or physical abilities is not more valuable than a drug that gives an 8 month extension but that time is spent mostly at home and in great physical condition.

That summarizes MY basic delimma right now.  I want to fight for targeted therapy but I don't want to wait too long and have it be too far gone.  And what if I wait for nothing?  Chances of getting it from somewhere are slim.  Or do I try to get on a compassionate use program for ipi – travel alot, much higher side effects, longer wait to know if I am a "responder".

People want to point fingers at the "evil pharma. companies" but often, as in my case, both my dr. and the drug company support me getting back in a trial but regulations prevent it.  Trying to get a new cohort to fit me is alot of back & forth bs.

My position like most patients I would think, is that I think I should have access to anything that seems to be a step up from the horrifyingly low success rates of the "approved" treatments.  If that means developing new ways to asses the date and make conclusions about the new drugs then I would think that should be something the scientists can design based on their drug and trial design.

I don't think it's right to compare the kinds of treatments developing now to "standard" treatments is ethical in a case like melanoma where there are no effective treatments (yes, I'm lookin at you IL2 and your measly 15%).  Not only is it apples and oranges but it's no medical accomplishment to simply "do better" than the last straggler coming around the bend  to cross the finish line.  That's like someone saying "Hey!  I'm taller than Amy!  woo hoo!" and everyone else saying "Big Deal."

The design of clinical trials penalizes the warriors that stay alive the longest.  To stay alive we're obviously tried everything under the sun so by the time the new trial drug appears it excludes us all except for the newly diagnosed.  Because if you've done XYZ in the past you're ineligible for XYZ 2.0.  But if you had not done XYZ then you wouldn't even be alive to see the development of XYZ 2.0

See what I mean?  Instead of being rewarded for my success over the last 8 years and mining my obviously miraculous (haha) body for relevent medical data that could help others, I get the door closed in my face since I am no longer a blank slate.  Ethical?  Hardly.  Medically sound as far as the data?  I think not.  I am sure much could be learned from my CNS mets – when / why / how they developed?  how can the targeted therapies be more CNS effective?  Have their been chances in the cells or tumors or non-metastesized tissues due to the targeted therapy?  etc. etc. etc.

I could go on and on even more than I have but it's frustrating to know your contributions to advancing melanoma treatment are not being utilized to their best advantage in a way that could help others and maybe even me.

I have to go take a nap. 

Amy
 

After I had biochem (the chemo elem. were cisplat. vinblast. and decarb. )  I was still vomitting daily 3 months after.  I did okay on an alternating schedule of Zofran and phenergren (often as a suppository)  I think it can also be done as a patch but my insurance would not cover that.  Doing it as a supp. was the least of my worries!

A

After I had biochem (the chemo elem. were cisplat. vinblast. and decarb. )  I was still vomitting daily 3 months after.  I did okay on an alternating schedule of Zofran and phenergren (often as a suppository)  I think it can also be done as a patch but my insurance would not cover that.  Doing it as a supp. was the least of my worries!

A