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 Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do

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BobW

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PostSubject: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 6:54 am

I'm scheduled to start my cancer treatment Monday morning at 8AM.

Friday morning, I learned the plan my oncologist has decided upon is not what should happen and will likely result in my life being shortened.
Let me explain.

I'll try to simplify this best I can so you can easily understand the dilemma.
He wants to use two immunotherapy drugs sequentially. That means I get four IV treatments of one administered every three weeks, and after that treatment has completed the other one is given to me.

The two immunotherapy drugs in question are nivolumab and ipilmumab.
He wants to start with ipilmumab.

Last Friday morning I decided to research this. And almost immediately I discovered that the latest trials and studies are all in agreement, that starting instead with nivolumab has far better results.

Here is just one example so you will see what I'm talking about...

http://www.onclive.com/conference-coverage/ecc-2015/nivolumab-before-ipilimumab-has-greater-efficacy-similar-aes

If you do the research like I did, what you will discover is that every medical webpage you find about administering these drugs sequentially is recommending that nivolumab should be the first drug administered in the sequence, not the second. Every one of them is telling us that the efficacy of the drugs using the correct sequence is far better than when reversed like he wants to do with me. And that translates into the drugs working better against fighting the cancer and giving me longer life.

When I discovered this Friday morning I was shocked. So I printed out the page I've linked you to above, and accompanied that with a letter to the doctor advising him of what I had learned. Since this was Friday and the treatment is scheduled to start Monday, I decided to hand deliver the letter to the Sacred Heart Cancer Center. I put it all in a manilla envelope and wrote with a felt tip pin on the envelope "FOR DR JONES - PLEASE READ THIS" hoping that when I handed it to the check-in person she would get it to the doctor and he would read it.

But when I got to the cancer center I discovered it was closed because of Good Friday. All I could do is shove the manilla envelope under the entrance door. So I have no confidence that my doctor will even see this before tomorrow morning when I'm scheduled to begin the treatment.

Now I'm faced with a real challenge. I do not want to have the wrong treatment administered to me tomorrow morning.
So what do I do now? Should I go up there and try to explain this to the nurses and staff who will give me the treatment hoping they'll understand why I'm refusing it? Will they understand? I will have printouts of several studies with me to show them why this is wrong? And I will request they contact the doctor and inform him of what has happened.
However, here's the sticky situation. These drugs are EXTREMELY EXPENSIVE. If that drug has already been purchased and is there waiting for me Monday morning, what kind of big ass problem will that lead to?
If I refuse it Monday morning will that mean I lose any other opportunity to use that drug again when all this gets sorted out?
I've never faced a more difficult thing in my life. What should I do?
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Eric

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 9:07 am

If the oncologist won't reverse the meds, get a different damn oncologist. Don't stay with a dumbass.

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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 11:14 am

Good advice.
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riceme

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 4:14 pm

First of all, don't worry about the expense of the medication. Almost any pharmaceutical that is unopened can be returned to the supplier for full-cost refund. Don't let anyone tell you differently. I can look yours up on Monday if you'd like. Even if it can't be returned, who cares? This is your life we're talking about. This is not the time to be frugal.

Aside from that I agree with Eric, with a caveat.

I was diagnosed with something a couple years ago that my old doctor was treating a certain way and like you, I am an avid researcher. I did a ton of research on the internet and thought that I agreed with her treatment path. Fast forward to about 12 months ago. Got a new doctor and she asked why in the world I was taking this medication and who prescribed it. I answered and explained and she proceeded to set me straight...

She told me, then showed me, that doctors have access to medical information that is not yet accessible to us... that is not yet on the internet. It's published in subscription-only medical journals. She showed me the literature that explained how my previous doctor's approach was outdated even though it seemed like the current, new-fangled approach per my own research. Then she changed the treatment plan and things have been better since.

The point is... your doctor may have even newer, better information that you don't have access to, or perhaps it's from a better, more reputable source. If he cannot or will not show that to you, get the hell out of there and find a different doctor. I know you researched medical facilities and doctors. Who did you end up with? Were you happy?

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Eric

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 6:37 pm

Yeah, we don't have access to medical journals and commercial medical data servers.  That is good advice, Ricey.  

Additional 2¢

However, sometimes the latest medical opinion isn't the best either.  Case in point: My blood pressure.  My lifestyle in the 1980's wasn't the best and I had high blood pressure and didn't know it.   BP was 190/130.  A blood vessel popped in my right lung and was leaking copious amounts of blood.  Double handfuls of bright red frothy blood.  I was drowning in my own blood... cool, eh?  It scared the shit outta me and I'm not afraid of nuthin'.

Anyway, the ER doctors put me on massive amounts of Procardia.  It was and may still be the latest BP wonder drug, but it hardly worked on me.  We got the BP down some and the leaky blood vessel healed by itself.  A different doctor put me on an old standby - Hydrochlorothiazide - and BAM!  BP dropped down a lot.  I was somewhat happily having low BP problems.  I went to an extremely low dose on a maintenance regime and never had to take potassium supplements from use of this diuretic.   The moral of this story is that, for this guy at least, the latest and greatest method isn't always the best for you.

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Nosyarg



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sun Mar 27, 2016 9:40 pm

Bob, I think that you should refuse the treatment tomorrow until you can discuss the timing of the treatments with your oncologist.
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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Mon Mar 28, 2016 11:11 am

Bob, YOU are the only one in charge of your treatments..  
I know one of the local joint replacement surgeons that is far ahead of the others in the latest greatest treatments because his father is the one doing the research and development of the treatments at one of the medical research schools.  A local eye surgeon wrote chapters in the text books used by medical schools and he also gives lectures at medical schools..  We have some fantastic doctors in the area..  Finding the right one for you is the hard part..

Eric, Joyce had high BP like yours was, 210/160.. For a few years, 4 different drs kept adjusting the dosages of 3 different BP meds without good results.. They had it down to 160/120 and were satisfied, but still said her BP was too high and ordered the same tests over and over and over.. Finally, another dr said "why keep using something that doesn't work?, and changed the meds to one old med that immediately lowered her BP to the lower limits of normal.. After adjusting the dose, she stayed on that med for a few more years without any BP problems.. The drug companies make more money on the newer meds than they do on the old ones that have been around for many years.. Many pharmaceutical manufacturers give the drs free samples and kickbacks for using the new drugs that make the manufacturers more money.. On the other hand, one drug will NOT work on every patient the same way and finding the correct drug and dosage might take a lot of trial and error..
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riceme

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Mon Mar 28, 2016 9:44 pm

Bob... what did you do?? Don't leave me hangin', bro. Shocked
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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Tue Mar 29, 2016 11:13 am

I hope everything turned out the way you wanted it to Bob..
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Eric

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Tue Mar 29, 2016 7:21 pm

He cancelled Monday's start of immunotherapy and called an oncologist he knew in Jacksonville. This oncologist agreed on Bob's doctor's course of action and Bob set it back up. His Pensacola oncologist thanked him for bringing the September data to his attention, consulted with his peers and they agreed that his original course of treatment is still warranted.

He had a CT scan of his head and there is no cancer there but there was something about blood vessels in his neck that they want to check out... again - not cancer. He'll start his immunotherapy Monday, I think.

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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Tue Mar 29, 2016 10:26 pm

As long as Bob is satisfied with the treatment plan he should start the treatment..
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riceme

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Tue Mar 29, 2016 11:27 pm

Okay, well hopefully someone showed him the data. But so long as he is satisfied that is all that matters.
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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sat Apr 09, 2016 1:23 pm

What's the latest with Bob??
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Eric

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Mon Apr 11, 2016 11:59 am

He hasn't changed a bit. The cancer in his lung was removed and his surgical "holes" are healing up but look red and sore. His first immunotherapy treatment went off without any complications or side effects.

He quit smoking... something I have tried many times to get him to do... but he is still chewing nicotine gum, so he is still addicted.

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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Mon Apr 11, 2016 2:08 pm

I quit using Chantix, but the urge is still there after 8 years.. I just have the power to turn away and not light one up, even though Cindy smoked..
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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Thu Jun 16, 2016 9:07 pm

Hurry back Bob.......
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Wed Sep 07, 2016 10:23 am

Just wanted to let y'all know that Bob is in the hospital. He had trouble w balance recently... then fell. In the er they found that the cancer had spread to his brain. They may do surgery. I don't know any other details or updates... just waiting for word from ppaca on the other forum. I wish we knew more... it's an anxious wait.
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Jake92



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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Wed Sep 07, 2016 11:28 am

Please keep me updated so I can visit him..
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Wed Sep 07, 2016 11:43 am

From ppaca: Bob just called me, he has not had the surgery yet, probably tomorrow and then to rehab for two weeks. He had to hang up because a nurse from the rehab place came in.
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riceme

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Wed Sep 07, 2016 8:42 pm

Thank you for calling to let me know, Pkr. 2016 sucks.
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Thu Sep 08, 2016 10:40 am

You're welcome... no word today yet. It's hard not knowing.
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Thu Sep 08, 2016 7:02 pm

This just in from ppaca:Just spoke with his friend she is at the hospital, seems the surgeon ran 4 hours over his last surgery. Bob has been in pre-0p since 830 this morning and they just took him into the surgery room and put him to sleep at 530. May be hours now.
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Fri Sep 09, 2016 9:15 am

No word yet... sigh.
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riceme

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sat Sep 10, 2016 2:07 pm

So did they do the CT Scan, do you know?
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PkrBum

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PostSubject: Re: Tomorrow will be the most difficult day of my life and I welcome advice to help me decide what to do   Sat Sep 10, 2016 6:41 pm

I didn't hear any results. At this stage I think we would've heard about it since Bob posted earlier today.
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