Local Onc decided not to treat my wife with HAI pump

[ptfly]

Dr. K didn't hv time to talk to the local onc until tmrw so I decided to call him on his mobile.
I swallowed my pride and anger and talked to him in a calm, mediating voice the best I could.

He feels he is not getting what he needs from mskcc and doesn't care for their tone. He also feels the pump if very dangerous for the liver based on his experience ten years ago.
I told him at that time the fudr dosage was double what they start at today (recently found that fact) and we need him to help us.

Eventually I think I made him understand this isn't about me, him or MSK. It is about my wife.
He agreed to treat her on Monday...only took six hours and every nerve and bit of patience I had.

What a day

[radnyc]

It would be interesting to find out if the reason so many doctors and hospitals don't pursue the HAI protocol is financial. It has been proven to be not only medically effective but also much less costly than than what we the standard treatment is. HAI treatment is usually done by infusing FUDR, a drug that has been around since 1970, and a systemic infusion of Folfiri or Folfox, I had the former. Folfiri in particular is less expensive than Folfox. I think is extremely unethical for your doctor to refuse to see your wife after he said he would treat her.
By the way I found this article from this year by Dr. Kemeny, which I believe is very pertinent to this discussion:

http://www.thejgo.org/article/view/1042/html

The last paragraph is pretty telling:

"How do we move forward? One of the problems of funding studies looking at HAI therapy is that drugs such as 5-FU and FUDR are no longer made by drug companies; therefore, there is no support for testing them. The port and catheter companies don’t seem to be interested in funding studies to show that hepatic arterial therapy may be better than systemic therapy and less expensive. There needs to be studies funded by governmental agencies to compare effective treatments, but also include cost analysis. If HAI therapies produce better results and are less costly, they certainly can be part of our therapeutic armamentarium to take care of colorectal patients in the future."

[ptfly]

I do understand the financial part but I think his concerns are based on antiquated data/experience. Funny because he describes the hai pump as antiquated treatment. I just wish he would spent 20 minutes catching up on the pump of today and the stats.
I think he is frightened by something he is inexperienced with and his ego doesn't like Dr. K/team. He keeps telling us the pump can easily wreck her liver. If he believes that why doesn't he discuss with MSK? Why do I have to tell him?

[justin case]

I'm in line with Voxx on this. I have been to Arkansas, but it has been too long to pinpoint Little Rock. I know M.D. Anderson, has a Dallas location, and St. Louis might also be plausible, as Voxx suggests. If your local onc refuses future systemic treatments, he may be being advised by his lawyer, as to possible malpractice lawsuits, as he is not trained, nor licensed in Arkansas, to assist in this treatment regimen Perhaps he was interested in the cutting edge technology, and wanted to help, but he was shut down by his lawyer. I'm a simple printer, if I get a printing order, and do some of the work, and the customer goes somewhere else to make changes in my work, I don't want to be responsible, for something that was not what I had intended to begin with. At that point, I cannot guarantee the product, and I certainly don't want the responsibility, if something goes wrong! My ex Father in Law was a doctor. I remember when he left his practice in the 70s, because the malpractice insurance became 25% to 30% of his income. In the case of the hospital that Voxx talks about, and M. D. Anderson , they are both teaching hospitals, with little concern for malpractice, as the oncologists, are not in private practice. M. D. Anderson, is a division of The University of Texas, Health Science Center. I know this because I was the printing production manager, for the Houston facilities stated.
For what it was worth,
Michael
P.S. I posted after you got your onc to agree, but this could be a potential reality, so I won't withdraw my post, as it could be of future benefit.

[mymom]

unbelievable. so sorry.

[chemo sabe]

My thoughts are very mixed. First, I am very sorry to hear this story. No one should be kicked around. I believe that people should live up to their commitments. Past that, my thoughts go immediately to liability rather than a doctor having a tantrum or not liking being told what to do.

For all of its’ goodness, the HAI pump is also associated with a rather large percentage of problems. I know it sounds so cold but I am going to guess that your onc checked his insurance policy. I was not present when you discussed getting pump with your local onc – I do not know if he attempted to discourage you or not. You say he agreed but now says that he “wants no part of the pump” and that just does not harmonize - I replaced my first onc but I do not believe either my original or current onc would first agree to and then walk away from a treatment I needed.

I see you live in Little Rock Arkansas. This is a real city with a population of over 700,000 people. I imagine there are at least several oncology / hematology clinics and quite a few oncologists. Please get past this setback and just get on the phone and find a replacement onc.

[mstults]

I as well have mixed reactions. I agree Michael about the liability. It has to always be on the mind of good Drs as well as those not so good. As I understand, and correct me if I'm wrong, the drugs are old and proven but the methodology of delivery is new and not widely accepted as a standard of treatment. I go to a smallish facility for Drs and treatment. Being in TN they rely on Vanderbilt a lot. Normally they will refer a patient to Vanderbilt. That patient is either referred back with suggestions as to treatment or taken on by Vanderbilt for a trial. Not meaning to be harsh but I couldn't ask my Oncologist to pursue a line of treat,met he's not comfortable with. As far as saying he will do it up front and changing his mind I don't go for that. Looks like some things going on behi d the scenes they don't want to involve you in. That's not right either as far as I'm concerned. Sounds like you have it worked out short term but I'd keep working for a more doable long term plan. Good luck.

[juliej]

The "Neglect of Patient" section of the AMA Code of Ethics states that, "Once having undertaken a case, the physician should not neglect the patient." Refusing to see a patient might be considered neglect, unless the physician appropriately terminated the patient-physician relationship. Terminating the relationship has to be done "sufficiently long in advance of withdrawal to permit another medical attendant to be secured."

I'd say he's in violation of the AMA Code of Ethics. I also think you're right about him not wanting to take orders from Dr. K or her team. But he knew all along that's what you intended to do. So to refuse care now is just egotistical posturing. Ugh.

See this link for more info:

https://ssl3.ama-assn.org/apps/ecomm/PolicyFinderForm.pl?site=www.ama-assn.org&uri=%2fresources%2fdoc%2fPolicyFinder%2fpolicyfiles%2fHnE%2fE-8.115.HTM

[debzak]

I also have an HAI pump but I live in New Jersey so I go to nyc or to the sloan center in NJ. From my personal experience you probably have atleast one extra day if you could find someone to see on tuesday (0r even wed). THere is usually enough fluid in the pump for an extra day or two in case of an emergency.

I hope you find someone.

debbi

[Marian1961]

Wow. What a terrible situation. I have nothing helpful to say but am so sorry for you and your wife. I do want to thank you for posting about this, it is a cautionary tale. I sincerely hope you can find a solution right away.

[Voxx66]

Best resolution I think you were going to get - and I'd get rid of that oncologist asap but you need him for now.

He is almost right about one thing: the pump is using antiquated technology. I think it could use a modern redesign but that wouldn't be quick, easy, or cheap. Also there is something to be said about simplicity of design for a device intended to last a lifetime. At any rate it's the only thing we have at present for delivering this sort of targeted therapy.

Hopefully things will go more smoothly from this point on.

[kmv]

I think it is so wonderful how you fight for your wife, she is so lucky to have you! I adore my husband but he is more of a bystander in my treatment. I wish he were more involved and even took some of the administrative and logistical burden off of me.

[ptfly]

The "Neglect of Patient" section of the AMA Code of Ethics states that, "Once having undertaken a case, the physician should not neglect the patient." Refusing to see a patient might be considered neglect, unless the physician appropriately terminated the patient-physician relationship. Terminating the relationship has to be done "sufficiently long in advance of withdrawal to permit another medical attendant to be secured."

I'd say he's in violation of the AMA Code of Ethics. I also think you're right about him not wanting to take orders from Dr. K or her team. But he knew all along that's what you intended to do. So to refuse care now is just egotistical posturing. Ugh.

See this link for more info:

https://ssl3.ama-assn.org/apps/ecomm/PolicyFinderForm.pl?site=www.ama-assn.org&uri=%2fresources%2fdoc%2fPolicyFinder%2fpolicyfiles%2fHnE%2fE-8.115.HTM

Very true. I knew this before I talked to him today. We need him at least for this treatment and he agreed to do it. We can change oncs but not many to pick from here. Dr, K called me later tonight and we have a good plan to keep this dysfunctional group together. I need the chemo treatment and the pump emptied and filled with saline. After that we have time to make changes.
Honestly, even though I resent what he did, I understand that he needs to feel like a part of this and not like a peon. I am going to try to make him a part of this and get the two team talking and sharing info. If it doesn't work, we will find another after this treatment.
He gave me very few options this time so I made it work.
My wife's health overrides all else
now and he won't have me in this position again.
I always knew if it came down to it I could take move back to NYC but we don't want to leave our home or families.
Hoping Monday is a low key chemo treatment and we get back on track but if not I will follow up with other options.
Hell, chemo is hard enough, why do we have to deal with this drama?

[ptfly]

Best resolution I think you were going to get - and I'd get rid of that oncologist asap but you need him for now.

He is almost right about one thing: the pump is using antiquated technology. I think it could use a modern redesign but that wouldn't be quick, easy, or cheap. Also there is something to be said about simplicity of design for a device intended to last a lifetime. At any rate it's the only thing we have at present for delivering this sort of targeted therapy.

Hopefully things will go more smoothly from this point on.

Yes we need him now. The more I learn about the jj codman pump the more I think it is a design
Ahead of the times. Freon is an endless source of power with no moving parts or battery.
Our local onc thinks it has batteries and transistors in it.

[Voxx66]

The source of power is actually the heat your body produces which cause the gas to expand and serve as a pump. Clever - but I'd rather have a modern programmable device that could adjust for temperature differentials and be programmed for different flow protocols. But like I said - this is the best there is atm. We have to use what is available and it's a good treatment if implemented correctly (It wasn't when first tested - it is being done correctly now)