12 replies to this topic

[janner25]

I'm very comfortable with my doctor and his advice on treatment.  However, my husband is wondering if a 2nd opinion would make sense.  Again, I have had a great response with tasigna - my counts at dx were not ridiculous - cbc counts back to normal, 1st bmb will be in April.

Any advice?

[jandk]

I would say go for it-you will get peace of mind for one and feel more comfortable with your treatment if the second opinion doc recommends the same treatment. Also, two heads are always better than one. My husband's onc refers to second opinions as consults-I like that.  

[WoofWoof]

Second opinion for what? DX.? Treatment? If things are doing well what would you achieve?

[janner25]

I'm not sure what purpose it would be - except maybe to give my husband a better piece of mind. The cancer center by us is great...but I think my husband is just nervous that the dx was done based on blood work...and although I"m responding well to treatment - and it seems like the side effects seem to be subsiding for the most part - I think he wonders if my treatment is right or if there was something else that could be done.  Not sure if our onc office participates in clinical trials - but the hospital that I've been recommended to go to by friends (who work there) and other doctors (my mom's old doctor - also oncologist) is close to an hour away - but really a great hospital (Thomas Jefferson in Philadelphia).  If I weren't responding to treatment - it would be an easier answer.  I always wondered if I 'really' have it - but I guess with the bcr-abl test coming back positive - not sure how positive as I don't know what the numbers mean other than the description said 'chronic phase' - guess I have it!

So - I'll wait and see if he brings it up again.

[Trey]

You expressed some doubt about your diagnosis, and also said you have never had a BMB.  Neither of these items would inspire confidence in an Onc.  A BMB should always be done at the diagnosis of leukemia.  But I suppose you had a FISH that shows BCR-ABL positivity, and that is reasonable evidence of CML, even if it does not give the full picture.  So I would not be so comfortable with your Onc, if it were me.  I am not so sure that you need a second opinion, but maybe a better Onc would be useful.

[janner25]

Still the novice that I am...not sure the difference between a FISH and PCR...the PCR is how the BCR-abl was performed.

I'm going to be going through PCR 'training' soon as my neighbor works in a lab and knows how to read all those trusty reports so she'll be able to translate it to me.  I think at initial diagnosis although I wanted to know all I could - didn't get into the nitty gritty.  Showing her my labs at the initial diagnosis - she said based on what she saw, she wouldn't question the diagnosis  - but she readily admitted she's not the doctor.

You may be right Trey...I wonder if that is the uncertainty my husband feels as far as my onc.  I know he feels helpless and this may be his way of trying to learn right along with me.  It's an adjustment for everyone!

[Trey]

A PCR would be the "third best" way to diagnose CML.  There are only 3 ways.  But I do not doubt your diagnosis, just that your Onc uses poor procedure, and does not provide you with enough information to understand your situation.  The good news is that such an Onc can bumble through just fine because the TKI drugs do such a good job.  But all in all, it is much better to have a good Onc, so I am in your husband's camp on this.

[hannibellemo]

janner,

Not that I wish a BMB on anyone, but there is so much more that the onc can learn from it besides the definitive diagnosis for CML; I would be concerned that one wasn't done first thing. In this instance I would follow your husband's instincts and look for an onc with more experience with our disease.

Best regards,

Pat

[janner25]

Thank you all for your information!

I have scheduled the 2nd opinion at Thomas Jefferson Hospital with a CML specialist (who ironcially has received referrals from my doctor - obviously not for me).  Anyway, March 7th is when I go...we'll see where this takes us .

[CallMeLucky]

I think you are doing the right thing.  My first oncologist was very good, the first day he saw me he did a bone marrow biopsy and aspiration and he ran a FISH and PCR test.  When all the results were back my diagnosis was 100% definitive and there were no unanswered questions.  We knew exactly what I had along with the characteristics of my particular form of CML (breakpoints and other technical stuff like that).  Despite all of that, I still went for a second opinion at Sloan Kettering.  At Sloan they confirmed everything and prescribed the same treatment plan.  Ultimately I decided to continue care at Sloan even though it is over an hour away.  My feeling was that this is a pretty rare disease and even though the treatment seems pretty straight forward I just felt it was worth being treated at a center of exellence if it was available.  People travel across the world to go there, the hour + drive didn't seem like that big a deal in the grand scheme of things.

From what you described it sounds like your current doctor is taking it for what it is, you had high WBC and PCR showed postivie for BCR-ABL, seems pretty straight forward you have CML, he probably read that Tasigna was recently approved for front line use and a comparison trial showed that it drove patients into a deep response faster so he prescribed it.  That all sounds right and it probably is, but I think your husband is looking for the peace of mind that comes from all the tets being run to backup all the assumptions.  I wanted that too.

I bet your second opinion will yield the same outcome but you and your husband will have the peace of mind knowing that you have done everything you should have done.

Best of luck

[jrsboo]

Good for you Janner,

YOU drive this bus, and if you are not happy with the way the bus is going, you get to change it! 

My first oncologist was a local hematologist in the local Tacoma cancer center which is affiliated with the big guns in Seattle: Seattle Cancer Care Alliance and Fred Hutchison Cancer Research and University of Washington Medical Center.  While the first doc knew what I had, based on FSH and blood work, he ordered a bone marrow test immediately (just ask for sedation, then you don't remember anything!), and then told me that he wanted me to go see Dr. Oehler at SCCA, that she was the expert in the area.  So off I went for a second opinion, and decided to go the extra hour drive (depending on traffic) to keep seeing her in Seattle. 

During a moment of complete insanity (based on being on prednisone--nasty stuff), I asked to see my original onc to see if he could help with side effects, so I didn't have to run up to Seattle every five minutes............he looked at me and asked what the heck I was doing there, he had no experience with Sprycel, and he would have to look everything up.  Told me to get my butt back to Seattle.

So I did.  And once the prednisone wore off, apologized to Dr. Oehler and told her to never listen to me again if I am on prednisone. 

Sigh.

Isn't this journey fun?

Caroline

[janner25]

Based on some other posts I've been reading - really wish they had done the bmb at time of diagnosis.  But I guess there's no going back.  Medicine is working...so cells that were there should be disappearing.  But it would be nice if the 2nd opinion had the full picture rather than pieces.

It will be interesting to see what, if anything, this other doctor recommends.  I've heard nothing but fantastic things about her.  So - I'm excited!

[CallMeLucky]

Just to keep perspective from the other side, you have not jeopordized yourself by not having the BMB done at dx.  It would be a nice to have and when you get it you will know what you need to know, which shouldn't be anything too much different from what you know today.  They should do it to be prudent, I have heard of plenty of people who did not have a BMB at dx and the only difference appears to be that their butt doesn't hurt.  In other words, this should not have any impact on your long term prognosis so don't let it get into your head and make you second or third guess things.  As you stated, the medicine is working, you are doing fine.  I think it is great that you are seeing another doctor that is highly recommended, I think our long term ability to deal with this since it is something that we are in for the long haul has a lot to do with how much we trust our medical team.