5 replies to this topic

[shaynalee]

Hi all, just venting a little bit and maybe looking for someone else having a similar experience. My husband was dx in late march of this year, and our experience with his onc has been absolutely awful. He never explains anything, the wait time for him is well over 2 hours and then he stands in the doorway for 30 seconds and leaves, and his answer to every question so far has been "google it."  Both my husband and I are beyond frustrated at this point, but because of where we live (in fresno, ca) and his health insurance, this doctor is one of only 3 options. The other 2 doctors available are at the same cancer center and the center ittself is terrible also. 

I have been trying to convince my husband that we need to just make the commitment to go down to LA for his care and get him into Cedars Sinai, but he says he doesnt want to deal with the travel and cost of having to go out of town for his appointments. I agree with the travela dn money aspect, but I dont know how else to get him the best care possible. His parents are also no help, because they see nothing wrong with Dr. Google It and undermine every treatment option I try to fight for. 

I am just at a loss and feel so defeated at this point. I know it is not my disease and it is not my choice how to handle it, but I cant stop wanting him to be in the best place and get the best care possible. Has anyone else dealt with terrible doctors through their journey? Any advice for how I can best support him without being overbearing or making it worse for him?

[kat73]

Hail, Left Coaster!  Being from the Right Coast, I had to Google the drive time from Fresno to LA.  It is indeed substantial.  I wonder if there isn't a CML super specialist (there are about 20 across the country) within the same range.  There is also the possibility of an initial consultation with someone like Dr. Druker in Oregon to get your husband squared away (with good explanations of things and time for your questions).  I would also point you to Trey's blog, where even after six years I go to get my info.  I'm hoping someone on here will give you the proper link to that, as well as some advice for a new doctor and/or center to go to.  But I can share with you my experience, and that might help you decide.  My first onc was local and very well qualified to treat CML and was a nice guy.  However, having said that, he was relatively inexperienced in all the newer TKI's and didn't have very many CML patients.  He really didn't know about side effects.  In addition, the set-up of the center was annoying in various logistical aspects, but as you know, those relatively unimportant things really end up mattering a great deal to the patient and his family.  I went with my instincts (like yours) and found a true CML specialist that would necessitate an hour's + drive from home.  It made a world of difference and I never looked back.  I feel that if anything needs to be known or has become known in the field, I will know about it.  If things go well for your husband - and they should - you will only need to see this doctor four times a year.  In my opinion, it would be worth the trouble and I would urge you to follow your gut feelings on this.  The first year or two you will find your questions expanding, not diminishing - the more you know, the more you will want to ask.  You need someone who is cutting edge and sees tons of CML patients AND will take the time with you.  The first months, sometimes much longer, see the side effects emerge as well.  Again, a true expert sees and hears more about these and knows what lab tests to be concerned with, and even more importantly, when he/she can tell you truly not to worry.  It must be very frustrating to manage someone else's care when they're reluctant to change - I applaud you for your spot-on concerns and diligence, especially in the face of the parental opposition.  You have MY vote.  I would say, at the very least, you need to change doctors; but I would go further (literally!) and get your husband to a true CML specialist.

[mlk210]

I loved my first doctor, but hated his office. Two hour waits were the norm. I told my husband too bad you can't just call ahead like you do at restaurants and then leave your house. The nurse staff was horrible with never knowing why I'm there or what they needed to do before my doctor came in. They'd say he'll be in a second and I would have to say you need to take my blood. Then they'd go ask him and come back with the stuff to draw my blood. My PCR tests were lost twice. I was reluctant to leave because he was twenty minutes away and convenient. Plus I liked him, but I feared due to his staff, my blood samples weren't being handled properly and that scared me.

 

So, I moved to the city for a CML Specialist. I was already on the 3 month schedule when I switched so I've only been there once. Because Chicago traffic is horrendous, it took me almost 3 hours to get there (parking and getting into the building) for a half hour appointment and blood draw and then my husband and i were back in the car for another hour and a half. I did think maybe I don't need to go this far, but their staff is what is keeping me there. My last doctor I would have to hound for copies of my blood work and test results. Nothing was up on a site for me to have on file. If I called into the office, I'd be switched around for 10 minutes before I got an answer and that's if they could even answer my question. With my new office, all my test results are posted to the page within days for me to check whenever I want and compare to my last ones. My doctor's nurse answers my questions within the same day I ask them and is happy to help me with whatever I need. To me it is worth the change, although I did care for my first doctor. He did always treat me with respect to side effects and looked into anything I was feeling. I like my new doctor too and for 4 times a year, I'll take the train and make a day of it in the city to feel as though I'm being well monitored.

 

If you are willing to go to LA, maybe try San Francisco. Here's a CML Specialist I found on the National CML Society webpage who is on the Advisory board as well. I've seen videos with him talking on panels about CML and he seems like he's very one on one with his patients from the way he talks. My PCP told me once that I could have a Specialist in the city and still get monitored here in the burbs. The two would work together. Maybe that's an option for you too.

Neil Shah, M.D. - ADVISORY BOARD MEMBER

University of California, San Francisco
Diller Comprehensive Cancer Center
San Francisco, CA

[Trey]

Since your husband is recently diagnosed, it may be better to establish a trend for drug response before changing oncs given the insurance issue.  So far you have indicated he had 100% at diagnosis and 26% after 3 months (but you don't know what the 26% represents -- FISH or PCR).  Another test would establish a useful trend line for response, so it may be worth sticking with the current Onc under your insurance circumstances.  If a person is responding well to drug therapy, then mostly what is needed from an Onc is ordering tests and a drug prescription.  We can help with most of the rest as long as he is responding well.

 

Part of dealing with an Onc is asking very specific questions.  They hate answering broad questions.  You should ask the following:

1) Two tests done so far showed 100% at diagnosis and 26% at 3 months.  I assume the 100% was the BMB cytogenetics?  Was the 26% from a FISH or PCR? 

2) What tests will be ordered this time?  FISH, PCR, others?

3) Is there anything to indicate his fatigue is from anything other than CML and drug therapy?  Does anything need to be done such as iron, B12, etc?

 

I think if you ask specific questions you will get the answers you need, and you may be able to stick with this Onc if he is otherwise good at what he does.

[chriskuo]

As Trey mentions, I would get your next set of tests with your current doctor.  If you are making good progress but still having communication problems with your current doctor, I would next see the top CML specialist IN Fresno.

 

If the second doctor spots a complex problem then or on a subsequent visit, you could then make the effort to go to SF or LA.

I saw Dr Shah once and he is very good but it is a waste of your time and money and his time if you don't have a difficult issue you need to specifically see him for.  I saw him in my third year of treatment after I had had problems with 3 different drugs.

[shaynalee]

Thank you all for the replies! We have decided to try the other doctor in the same building as his current onc and hope that he is better. No joke, these 2 guys are the only option he has with his "health insurance" (which i put in quotes because to call it that seems ridiculous sometimes). So if onc #2 doesnt work out, we will have no choice but to go elsewhere. We both have extremely busy jobs and after discussing it further, realized that travelling for his visits would be very hard to make happen. 

Trey, I do try to ask the right and specific questions when I am able to go with him. The issue is that sometimes I cant (I was not there for the last one where they did the test that we arent sure if its FISH or PCR) and he is a person who doesnt ask questions at all and request better care, he just sits there and then complains later. That being said, I will definitely ask those exact questions next time I do go and hopefully get some better answers.

 

We are also hoping that a new onc will have a more informative discussion with us about the possibilities of having children with this disease. Does anyone have any experience with this? I know most people arent diagnosed as young as we are, but maybe some of you have some insights and personal experinces that will be helpful. Is it safe for men to father children while on Sprycel? Does he need to come off medication when the time comes?