14 replies to this topic

[luvmybees24]

Hello everyone! I am finally going to see Dr. Talpaz the CML specialist at U of M this week. I have a list of things I want/need to ask him but just wondered if anyone had any suggestions for things I should ask? Need to make the most of the visit. lol. Has anyone been to him? What happens on the first visit?

Laura.

[Susan61]

I hope  you have a great visit with Dr.Talpaz, and glad you have a list for him.  That is the best thing to do, is to make a list and bring it with you.  I think when you get into the doctors office sometimes you just lose your train of thought, and then after you leave you say why didn't I ask this or that.  I know the first thing on your list is if you can just do the PCR or do you have to have that BMB.  Will say a prayer for you for a good visit with some good answers.  Please post as soon as you have some information.

[Mr._Bill]

Hi there, I saw Dr. Talpaz a few weeks after my inpatient stay at the U of M. At the time I did not have many questions for him,

So it looks like You are better prepared for your visit. He wanted me to get blood work done there that day, and to schedule me

for a BMB, which he recommended that I have once per year. I liked the U of M very much for all they did to quickly diagnose me

and begin a treatment plan. Now I am seeing a local Dr. for my CML, since the U of M is a 3 hr. drive for me. The current Dr. I see

told me that I do not need a BMB, since the U of M did all the tests I needed, using blood samples to determine the type of

leukemia. So, I tell everyone I'm sticking with the Dr. that won't make me get a BMB.

[Sneezy12]

Did you have a BMB at diagnosis? If not, you should have. Frank

[PhoenixPat]

Laura -

You can find a list of questions on the National CML Society website which you can modify to suit your needs: http://www.nationalc...ask-your-doctor  In addition to taking your list with you, figure out your best way to take notes from the appointment. You may want to consider taking a friend along.

Good luck! Pat

[CallMeLucky]

One question I thought was good that I asked my doctor early on was "Is there anything about my case that you would consider atypical or is there anything that concerns you?"

Ideally the answer is no.

Best of luck

[Sunshine48]

I'll be at motts hospital all day tomorrow the 17th, which is part of UOFM... Their cancer center is amazing, I love it and all the people / doctors there! My first initial appointment for my second oppinion I, like others said, brought paper and pen. They are good with answering any questions you might have and doing it in a way that makes sense! I had a BMB scheduled right after my first appointment thought and blood work before hand. Are you going for just a second oppinion or is something not going right? For myself I wasn't responding to any of the meds so my oncologist sent me there... My major questions were:

1. why wouldn't the meds be working for me?

2. how long will you keep me on the next generation meds before we know if they are working or declare them as not working?

3. Since you deal with this professionally what are your recommendations on what I should do?

4. The side effects of the other trail drugs I was going to try, can I take them with my current meds?

5. Is there anything you think I should know, or that other patients have asked that might help me?

these are just somethings I asked but again I might have been there for different reasons. My first visit he scheduled me an apointment with a BMT doctor to get stuff started as a back up plan cause I was progressing so quickly.

I hope your visit is wonderful and you have a great visit like mine have been.. What day are you going? Do you have someone going with you? If not you can always bring a tape recorder! I'll be there tomorrow and ummm I think that's it this week but I have 5 appointments tomorrow uck lol. Let us know how it goes, you'll love the facility.

PS: when you get to the correct floor, I don't know about you but i got super nervous and felt faint, when you get off elevators go right and first hallway to your right you'll see an area for patients to get water, juice, coffee and snacks.. I got some apple juice and crackers to calm my nerves.. .just an fyi

[luvmybees24]

Thanks Susan! That is the first thing on my list and the mainly the reason I am going. I am hoping to hear PCR and FISH tests will be sufficient!!! I will post after my appt!

[luvmybees24]

Hee hee! I won't watch any concerts. Thanks Billie! I already starting jotting things down and Wednesday night I will sit down and make a nice list. I am usually good at remembering things *even under stress* but thanks for the notebook idea! I wouldn't have thought of that!

[luvmybees24]

I had a BMB at diagnosis in November 2011. My current onc wants to send me for a 6 mth one but since my PCR showed a 3 log reduction and BMB's are hard on me, I don't think I need one. I am hoping Dr. Talpaz agrees. lol.

[luvmybees24]

Thanks for the tips! I won't be there when you are. The lady I talked to on the phone was SUPER nice and since I have heard nothing but good things about U of M I am feeling REALLY good about going there. I am having my dad take me because the stress of the appointment, driving somewhere I don't know and driving on a freeway would be enough to make me pass out from anxiety. lol. I probably won't have him come in the room because he isn't much use with that kind of thing lol. I was going to have my mom come with me but she had to work. I will write notes and I am sure I'll calm down right away.

I am going because I want a second opinion on a repeat BMB, questions about various things and I would like them to recommend an oncologist close to me. U of M is only an hour from me but I don't think I could make the trek as often as I would need to see an oncologist. I am really excited to see a specialist!!!

I am sorry to hear you are not responding to treatment. That is so scary! I hope something works for you!!!!!

Laura.

[Susan61]

Hi Laura:   I hope you come home from your visit feeling good about what Dr. Talpaz has to say.  Once I achieved my Ccyr, they told me no more BMB unless something shows up in the blood work to make them think there is a mutation or something.  I started doing just the PCR from that point, and that was 2001.  I also hope you get a good Oncologist more local to you for your follow-ups.  I think this BMB has been your biggest issue because of how hard they are on you.  Glad your Dad is driving you, it will be better for you that way. 

     We will all be anxious to hear some good news on your return.

[PhilB]

Hi Laura,

Do you havce all the paperwork from your previous BMB(s) to show Dr Talpaz / has it already been sent to him?  It would be useful to be able to confirm that there were no issues picked up on the BMB that they might want to check on - other than the obvious one of having CML.  If your previous results were plain vanilla CML with no other translocations or deletions, no excessive fibrosis, etc then the value of a further BMB now you are MMR is pretty questionable.  If there was anything out of the ordinary then it may be more worthwhile to lift the lid and check it out.

[ChrisC]

Here's hoping all goes well, and that you are calm and clear and comfortable all day, especially in asking your questions and getting clear answers (recorded or written down).

I got in the habit of printing out (2 copies may help: one for the doctor, one for you to use to write down the answers) my questions and presenting a copy to the nurse who takes blood pressure, etc. prior to the meeting with the doctor. That way the questions can be presented to the doctor prior to the meeting, and there is the understanding that you will need these questions answered.

Also, as mentioned, bring copies of any test results, and you can refer to them when asking questions.

Good luck!