18 replies to this topic

[JMGrad]

Hi everyone

     I was diagnosed on 18 Jan with CML and was started Gleevec 400mg on the 27th. Ive been all through this forum since then reading and researching and one of the things I came across was it's good to have an ocologist who specializes in CML. Well, mine doesnt and that's ok. She's super awesome and I believe in her - but I also know that's not everything. So... I applied to MD Anderson in Houston about a week ago. I got a call today saying that they have an appt for me on MONDAY! Yes Monday. That they were going to do a chest Xray, more labs and another Bone Marrow Biopsy Also, that I should be prepared to be there for 3-5 business days!!! Oh my Gosh! Has anyone been there? Do you know why for so long? Im scared and dont know what to expect...

Jean

[NotJack?]

Hi Jean,

I have a very good general onc in my home town.  I trust him and respect him greatly.  However, I paid for my own second opinion at the Mayo clinic with a CML expert, with the blessing of my general onc.  My general and my hired gun have worked together to provide me with care.  It is the very best of both worlds for me.  My specialist respects enormously the general onc's necessity to be versed in many cancers, and vice versa--no egos just working together on my behalf--perfect. They don't always agree, but I benefit from the discussion that ensues, and I make the call.  I do most of the testing at my home cancer care if my expert calls for it, and then bring the results with me for a couple hour visit.  It might matter that my home onc has Mayo do the testing from his office.  It is nice that they trust and work together for me.  

You are going through the scary time, don't know your counts to reassure you, but if you post them I am sure that Trey or someone would help allay your fears.  Good luck Monday, I will be thinking of you, Jack

[scuba]

Jean,

Do you know who your doctor is going to be at M.D. Anderson?

The 3-5 business days makes no sense. My first appointment at M.D. Anderson took all of one day and even that was broken into two parts: Morning labs and afternoon Clinic visit with Dr. Cortes (who I recommend by the way). You will likely have to arrive around 8:00 a.m. to have a CBC taken as well as all the other blood samples at one time in the fast track lab (and it is fast track - its' more like an assembly line factory). A couple hours later you will have the bone marrow done. You will be free for lunch and then around 2:00 or so you will meet with the Interns to review your case, have pokes and prods done (blood pressure, vitals, etc.) and then finally you will meet with the specialist Oncologist (such as Dr. Cortes). He may change your prescription or leave it alone and use the M.D. Anderson lab results to begin your trend lines. He won't be able to tell you much more until after they get your bone marrow and blood results back (two weeks). And then I did my follow-up with him by e-mail. Depending on what your lab reports show, the M.D. Anderson doctor may write a new prescription for you that is customized to you to get started.

In my case, the attitude was to get the cytogentic cell counts down as fast as possible and use the latest TKI available (in this case Sprycel). You should arrange to have follow-up CBC's done at your local doctor's office where you were diagnosed instead of having to go to M.D. Anderson for CBC follow-up. Once you are stable and in good remission (could be in as little as six months), you will likely be able to visit once every 3 months or more to have the PCR/FISH blood work.

Again, in my case, I now only go once every 3 months for PCR and CBC. And I will have a bone marrow done at six months. During my rough days, I was having CBC's done once per week at my local doctor's office.

Have no fear - the people at M.D. Anderson are outstanding with emphasis on the patient. The place is hectic with a lot of people from all over the world descending on the campus. Parking is a pain in the butt - so arrive early. Avoid eating there - go have lunch somewhere on Bellaire blvd - good Texmex (will kill any cml cell it comes in contact). You will be in excellent hands. M.D. Anderson has seen and done it all. You are going to be fine.

[hannibellemo]

Hi, Jean,

Jack's situation is mine exactly (except my insurance accepts Mayo thank goodness). I was diagnosed at Mayo - Rochester a little over three years ago. I was sent there because my GP had never seen a WBC and platelet count as high as mine and thought I had an acute leukemia. He spoke to one of the local hem/oncs and he suggested that I go either to Iowa City or Mayo because they don't treat acute leukemias here. The onc felt pretty sure I had CML since I felt so good but was erring on the side of caution.

I also feel I have the best of both worlds, my local onc works very well with my Mayo onc who has much more experience with leukemias and I benefit. Any labs beyond normal (like our PCRs) are run at Mayo, too, with blood drawn here. You really don't need to see a specialist for run of the mill CML (it's been said several times on this board) but it's nice to know that they are out there when you need them??.

I'm going for my yearly visit to Mayo Feb. 23 for a PCR and what I hope will be my last BMA for a long time. They will do them under anesthetic (propofol and fentanyl) so I don't absolutely dread them. Mayo also tells everyone it may be necessary for a longer stay but generally with CML that is not necessary. I would question any test they want to run beyond the X-ray and BMB/A and various labs as to what they are looking for and what they expect to find. If your spleen is enlarged they may want to do a cat scan but really there are not many other tests that are really necessary if they don't find anything beyond the norm.

Good luck!

Pat

[starlago]

Jean,

My experience is similar to yours.  After I was diagnosed locally, my oncologist consulted with the leukemia department at MD Anderson and within 3 days I was sitting in the waiting room.  They told me the 3-5 days also, but it turned out to be only 2 - the reason they gave was they were fitting me in.  I became part of a trial (dasatinib) which was great since my out-of-pocket expense for Gleevec (the only approved first line treatment 2 years ago) would have been $4000/month.  The first year I traveled to Houston every three months and saw my local oncologist monthly; second year traveled to Houston two times and saw my local in the interim.  My 2-year appointment is coming up and if all is good, I expect I won't go back for a year.  Like Pat, I feel I have the best of both worlds - communication between the oncologists has been good, especially at the beginning.

The first visit will be a little overwhelming - at least it was for me.  The place is mammoth and teeming with people in various states of disrepair.  Be prepared to hurry up and wait - I was sent here, there, and everywhere and back again.  I found it remarkable, that when I did finally see the doctor (Susan O'Brien) all the data had indeed landed in her lap.  Clinically, I think MD Anderson is tops; bedside manner, not so much. Looking back, I realize they knew then what I know now:  I was going to be OK.   I don't know where you are emotionally with CML, but it was during my visit to MD Anderson that I realized I was indeed a cancer patient!  I've come a long way since then and you will, too.

Good luck Jean.  Maybe we'll run into each other at MDA.  You'll recognize me - I'm the one with leukemia!!

[sdl722]

Hi Jean

When I scheduled my first appointment with MD Anderson last April they told me that I would be there for 2-3 days.  I live in Houston so it wasn't too much a concern for me.  My first day there (a Monday) was an all day affair where I met with the business office (for insurance, billing, etc.), had a nursing consultation and detailed medical history done, had a bunch of blood drawn (ask for a gatorade, they have in a fridge at the fast track lab), met my doctor twice, had a chest x-ray, and finally had a bone marrow aspiration and biopsy.  My WBC was really high at diagnosis (391K) so they flooded my body with Hydrea for a few days (500mg or 10 pills a day at firs - I hated that) to get the WBC down.  After that first Monday, my doctor had me come back on Thursday to do another CBC and see how my WBC was.  I also had an EKG done that day in preparation for me treatment.  The WBC still wasn't low enough for him, so I had to come back the following Monday and then I started my treatment on Tasigna.  So they might have told you to expect to be here a few days because depending on your specific situation, your doctor may want to see you again in a short time frame. 

Good luck next week.  I wasn't sure how I would react when I first walked into the place, but it didn't take me long to feel at ease when I saw how many people were there and realized I wasn't the only one going through this.  MDA knows what they are doing and treat hundreds of patients with CML.  As others have echoed, you will be in good hands.

Stephen

[Trey]

I am not a big believer in a CML Specialist unless there are high risk factors at diagnosis, or complications that crop up over time.  The reason is that, for most of us, all we need is someone who is reasonably competent to order and interpret the test and write the drug prescription.  The drugs do the real work for us.  That is not true for many diseases, but for CML it is. 

If a person has a great local CML Specialist as their primary Onc, then wonderful.  But if you have to go far out of your way and travel to see one at great expense in time and money, re-accomplishing all the tests, and being put through some gristmill of a bureaucracy, then I just think it should be for a good reason.  And what will they do for you without seeing how you respond to the drug therapy over at least several months?  If a person is newly diagnosed as you are and has no high risk factors, and the drug seems to be initially working, then the specialist will just tell you to keep doing what you are doing and watch and see if anything changes.  So you could easily be disappointed by a visit to a specialist.

Also, not every Onc at MDA is a CML Specialist.  There are probably 2 at MDA Houston (Cortes and Kantarjian).

This is just my personal viewpoint.  Some people need the re-assurance.  It is a personal choice, I realize.

[pamsouth]

Dear JMGrad,

Yes I have been there, MDAnderson Houston, Tx.  No need to worry yourself they are AWESOME!!!  

I live in the Indianapolis Indiana area and flew there (MDAnderson Houston Tx) in 2005 and a year later in 2006..

I was so..... shocked at how smooth everything went from the time I picked up the phone and called and made an appointment, and how they took care of you there.  Don't worry if you don't know where to go, there is always someone who will see you, sort of looking lost, and say can I help you, helpers are everywhere.

I was diagnosed in July 2005 with CML at the age of 57.  I won't go into the details.  I had received in the mail, a thick catalog, from the Leukemia Society, that had a list of all the major hospitals in all the states.  The catalog listed their stats for different cancer and transplants, etc.  Example, like how many transplants, and the survival rate and number treated. 

Well I wanted to go to one of the leading Leukemia Centers and I chose Mdanderson, although there are others that are good, too, such as the Hutch in Seattle Wa,etc.

I just picked up the phone and called MDAnderson and had an appointment there with in two weeks, it was that easy.  I'm not sure it seems like my stay was to 3 or 4 days, I don't remember.  After my initial call they mailed me all the info of places to stay and how I would be shuttle to hospital. I also got discount rates where we stayed and free breakfast and evening meals.  The LLS reimbursed me for my air flight ticket, but not my husband.  My insurance paid for most everything. 

I could not believe how co-orinated everyone was.  I can't speak well enough of my case manager, who made everything happen.  If there was a problem with the insurance I didn't have to deal with it they did!!! 

Believe me they are on top of it!!

PS.  going to MDA paid off in a big way. Otherwise after coming home, I probably would have made some bad choice, cost and health wise.  I wouldn't have know that as a newly diagnosed patient, until after the fact.  That might not make sense, but my trip there was worth every cent!!

Best of wishes, with prayers and blessings,

PamSouth

[hannibellemo]

Hi, Jean,

After reading some of the other posts I wanted to add that I was started on hydroxyurea and allpurinol before I went on Gleevec. I did not stay at Mayo for that process, I was at Mayo for one night and returned a couple of days later for my BMB/A. I had my blood tests done at my GP's office and the results were faxed to Dr. L at Mayo so he could adjust my dosage. He was very cognizant of my time and money and didn't make me stay for anything that could be done locally. However, there is a good working relationship with my local CC and Mayo so that may make the difference, that and the fact we are only 90 minutes apart.

Pat

[JMGrad]

Hi Everyone!!

    Thank you SO MUCH for your replies!! I am beginning to feel a LOT better about the trip. I live in San Antonio so it's not TOO far away - about 4 hours each way. It's going to be an early morning! I AM seeing Dr Cortes too! I guess I lucked out b/c I didnt ask for him... Someone is looking out for me! I went to see my Onc today about the rash I developed on Gleevec and they did some labs. Because I had been on Gleevec for 10 days before my onc had me stop - my white count was down to 11K(!!) and my platelets were down to 665. My onc told me that I didnt have the 'typical' Gleevec rash and that she thought what I had was a genuine allergic reaction. She also mentioned that they didnt have a lot of pt's with CML & I was the first they saw this with. I would like to stay on the Gleevec because of the great response I had... So I guess it's perfect timing!! I have pictures (I sent them to my mom LOL) so Im going to take them with me.

    Thank you for all of the well wishes (& warnings!) I will definetly let you all know how it goes.... And Im looking forward to some good mexican!

[Sneezy12]

There is no "typical" Gleevec rash. Frank

[JMGrad]

THAT's why I am so glad I am going up on Monday. I am hoping they are going to look at the pictures and tell me that it's ok to start taking the Gleevec again!

[Trey]

You live in San Antonio, and hope to find "good Mexican" food in Houston?  That is so wrong.  Michael lives in Houston.  He eats curcumin sandwiches.  Kinda tastes like vegemite, I assume.  Just sayin' 

[scuba]

Only in Houston - baby!

[Trey]

I think our Aussie ladies will recognize that.  Vegemite tacos.  I will go puke now.

[hannibellemo]

No offense, Mike, but I can get that here in Iowa!

Pat

[Marnie]

The best Mexican around is at a little dive in Golden, Colorado.  Best fajitas and carnitas to be found anywhere north of the border.

[GerryL]

Hi Trey,

Interestingly enough it is a large American corporation that owns Kraft which makes vegemite, so we have you guys to thank for it now.LOL

[jjg]

Vegemite is ridiculously high in salt too, so no more  for this "happy little vegemite", a phrase which will hopefully "pass through to the keeper" until you check this out:

http://www.youtube.c...h?v=0yA98MujNeM

We're happy little Vegemites

As bright as bright can be.

We all enjoy our Vegemite

For breakfast, lunch, and tea.

Our mummies say we're growing stronger

Every single week,

Because we love our Vegemite

We all adore our Vegemite

It puts a rose in every cheek.