Jump to content


Photo

Time to look for a new doc?


  • Please log in to reply
25 replies to this topic

#1 snowboots

snowboots

    Advanced Member

  • Members
  • PipPipPip
  • 48 posts

Posted 19 October 2015 - 07:26 PM

I haven't checked in for a while. Guess it's my day to vent. Been biding my time dealing with some Gleevec side effects and patiently awaiting test results. Diagnosed and started on Gleevec March 12 this year. Seeing the hemo/onc on a regular schedule for CBCs which were pretty much "normal" all summer. In June I asked for a PCR because I really wanted a baseline from which to judge the effectiveness of the Gleevec. He didn't want to do it and said I should wait 6 mo. to a year for a PCR. I insisted, he relented. June result .65 which I was happy with. October rolls around and I ask for another 3 month PCR check. The doc was really hesitant, said it was too expensive because it has to be sent out to Arizona to a lab (what does he care, my insurance is covering it) and didn't want to do another one until next March. I insisted and he finally relented. No word so called in for results two weeks later and they told me I was "in remission". I asked for the numbers and they said numbers aren't important - you are in remission. I asked well what kind of remission? Hematologic? Cytogenetic? Molecular? The nurse said she didn't know. So I hike it over to the office and demand a printout of the results. Came back MMR at .05 - so happy! And relieved! But why should I have waited and worried another 6 months for this news? Geez, you would think this would at least rate a "good news" phone call from him. Isn't a 3 mo. PCR test the "norm", or am I overreacting? And why is he so stingy with information? When I was diagnosed he just told me to "Google" it if I had any questions! Sometimes I feel like I know more about CML than he does. So, my question is, since I am at MMR for now and seem to be responding well to the Gleevec, should I stick with this guy locally or make the effort to find another doc with more CML experience? I have done many searches looking for someone competent but it seems I will have to drive hours away to one of the major institutions in Philly or Baltimore. I really don't relate to this guy very well and am not really comfortable with him. But what's the first step in finding someone new? Do most of you see a local hemo/onc, not necessarily a CML "specialist"? My primary physician has no other recommendations and I don't know anyone else with CML who can suggest someone. There are many other hemo/oncs in my area, but how to pick one? By the way, thanks to all on this forum who got me through the first few months of terror. Can't tell you how much your knowledge and support has meant to me.

#2 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 19 October 2015 - 07:41 PM

As long as you are the one who understands CML, the Onc only needs to become the drug prescription/PCR monkey. 

 

But I don't like monkeys.  They pee and crap on everything and make a lot of ear piercing useless noises.  So I would fire him.

 

But if it is a case of driving hours to see a competent Onc, or a few minutes to get the prescription from the monkey, I would tend to put up with the peeing and crapping and stick with the monkey.  Truth is, you don't need a competent Onc any more.  That is not true of everyone, but in your case it is.

 

Life is good when you can live with a peeing crapping monkey and be fine with it because you are the one who is in control. 



#3 Tom1278

Tom1278

    Member

  • Members
  • PipPip
  • 15 posts
  • LocationBaltimore, MD

Posted 19 October 2015 - 07:56 PM

Time to fire him.

 

The NCCN guidelines along with general best practices in CML treatment indicate PCR every 3 months.  Period.

 

You have good choices in Philly and Baltimore.  I see Dr. Alison Loren at Penn in Philadelphia.  She is excellent and a CML specialist.  Also, Dr. Douglas Smith at Hopkins in Baltimore is a CML specialist.

 

I used to go to a local oncologist who said he treated several CML patients, but I routinely had him telling me things that I knew weren't right.  I feel much better now going to someone I can trust.


Diagnosed with CML in July 2012 (33 years old)

MMR since March 2015; E453K mutation

600mg Gleevec

 


#4 tiredblood

tiredblood

    Advanced Member

  • Members
  • PipPipPip
  • 474 posts

Posted 19 October 2015 - 09:37 PM

I'll tell you Snowboots, it was uneasiness with my provider(s) that led me to the doctors that diagnosed me. If it hadn't kept eating away at me, I may have never been diagnosed until the condition was out of control.  When you have something like CML, it is my opinion that it is best to seek out the opinion of many, and choose what is best for you.  You may indeed know more about CML than he does.



#5 soundoff

soundoff

    Advanced Member

  • Members
  • PipPipPip
  • 129 posts

Posted 20 October 2015 - 01:36 AM

Well said Trey!

#6 RayT

RayT

    Advanced Member

  • Members
  • PipPipPip
  • 42 posts
  • LocationSyracuse NY

Posted 20 October 2015 - 09:04 AM

Snowboots, it's time for a new doc.  Any good hem/onc should be able to take over your care.  Call the ones in your area and talk to them. Find out what experience they have with CML, what their treatment philosophies are, how aggressive/conservative they believe assessment and treatment should be, how they deal with side effects and alternate treatments, etc.  Find someone whose beliefs and style best matches yours.  Good luck, I'm saying a prayer for you.



#7 snowboots

snowboots

    Advanced Member

  • Members
  • PipPipPip
  • 48 posts

Posted 20 October 2015 - 10:01 AM

Thanks everyone for your insights. Tom1278, Dr. Loren and Dr. Smith are indeed the 2 that I have considered. With the winter driving weather coming up, I may stay where I am for now as long as no problems crop up. Might think about at least a consult with one of these 2. I am looking at "someday" being able to reduce my dosage of Gleevec, and my current doc says absolutely no way EVER!

#8 kat73

kat73

    Advanced Member

  • Members
  • PipPipPip
  • 884 posts
  • LocationWashington, DC area

Posted 20 October 2015 - 11:41 AM

Oh, Holy Cow, Snowboots, RUN!!!!!  This is bordering on malpractice.  This guy is worse than a peeing monkey.  I take Trey's point about just needing the meds, but my goodness, haven't we heard enough stories here of things going wrong, even many years down the line, even after reaching undetectable and conquering side effects?  Stuff can - and does! - still happen to us.  And you need a CML expert for that.  Plus, and this can be even more important, you need the confidence boost an expert can give you.  What a relief it was to me to change docs - I relaxed my grip of fear immediately.  I think I cried on the way home, the burden that had been lifted was so great.  At long last, I wasn't the only one worrying over me - I didn't have to do all the research, all the internet mining - trying so hard to analyze scientific stuff that I had no training to understand.  I still keep up, I still have questions, but now when I ask the onc and he says "don't worry about that" I believe him.  I believe that he is not brushing me off.  I believe that he KNOWS.  (He tells me when he doesn't know, of course.)  I don't know where you live, but I can certainly second Tom1278's recommendation of Dr. Douglas Smith at Hopkins in Baltimore.  He is on that page of experts that the CML Society prints out (I would link you here if I knew how) and is on the committee that writes the NCCN Guidelines.  I understand how hard it is to find someone, especially when your PCP doesn't help.  I was in the same boat when I wanted to make a change.  Didn't know HOW to go about it. I only found Dr. Smith because I called my old medical oncologist (I had seen her for breast cancer) and her partner hollered in the background, "tell her Smith at Hopkins - I did my fellowship with him". Pretty random.  Anyway, I will not be able to SLEEP tonight until you promise to start looking.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#9 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 20 October 2015 - 02:51 PM

Couple of thoughts snowboots. I had a big talk with my onc, we cleared the air and I now work well with her. Because I have the interest and time, I email her links to articles I run across on cml because I know she might not have or take the time to read them. Not to be a brat but to remind her I'm still learning everything I can about cml and will want her aware of things I may bring up.

Another idea, print out nccn practice guidelines, mail to him with a note that you'd feel best about following them. I think at some point letting him know that you're considering consultation with a cml expert couldn't hurt your cause. Then do it in the spring when driving won't be tough. If you can get what you know you need from him, labs and drugs, I'd stay put till it's less of a driving hassle. Just wear a rain coat and rubber boots to avoid all the pee and crap!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#10 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 20 October 2015 - 02:58 PM

Oh, another thought about why he's reluctant to run pcr every three months. Many docs are having guns put to their heads by insurance companies that want them to do as cheap a management of diseases as possible. Most docs still do the right thing and do what's in the patients best interest but not all. I'm also curious how many patients with cml your doc has managed. Mine has only seen 20 so that explained to me why she seemed a bit behind on research. She carries 200-300 blood cancer puts right now, so believe me, cml is not her biggest focus. Thank goodness my hmo requires their docs to follow national practice guidelines.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#11 Debbie*2015

Debbie*2015

    New Member

  • Members
  • Pip
  • 1 posts

Posted 21 October 2015 - 07:49 AM

Hi Snowboots, I'm not sure if this would work for you but my sister has AML and is being treated at MD Anderson which is about 2 hours from her home.  MD does all the heavy stuff like BMBs and actual AML doctor visitis every 3 to 4 months and they prescribe her chemo dosages and all but she sees a local hematologist/onc who does her labs and actually sets up the chemo treatments locally so she doesn't have to drive to MD all the time.  If she needs meds, MD lets her local guy know and they will prescribe it for her.  If your local doc is willing to work with the specialist you find further from your home, maybe something like this could be set up between the two of them for you.  Just a thought.

 

 



#12 AllTheseYears

AllTheseYears

    Advanced Member

  • Members
  • PipPipPip
  • 73 posts
  • LocationNorth Carolina

Posted 21 October 2015 - 09:24 AM

Snowboots.  Short answer: Yes, it's time to look for a new doctor.  CML is a lifetime gig and stuff happens.  You want to trust your oncologist and have rapport with him/her.  I switched doctors two years after my diagnosis (quite a while back).  I, too, was suspicious of my onc's lack of knowledge and short answers. She once told me not to take notes when she explained things.  (I'm not an auditory learner.) One day I asked her, "How many CML patients do you have?"  Her answer: "You are my only one." That did it.  For the last 11 years, I have gotten my care with a CML specialist at a major cancer center. At first, I drove five hours each way.  I moved 2 years ago; now the drive is 3 hours each way.  Was the switch and the drive worth it?  You betcha! 



#13 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 21 October 2015 - 09:41 AM

Sometimes I feel like I know more about CML than he does. 

Bingo, you probably do know more and he is threatened by that. I wouldn't want to fight him everytime to get the tests that I know need to be done (and when they need to be done) so I would probably fire him. I can't believe it's a comfortable feeling to know more than your onc. But, if you can get what you want from him, then Trey's idea works, too. 


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#14 colleen01

colleen01

    New Member

  • Members
  • Pip
  • 5 posts

Posted 21 October 2015 - 09:53 AM

Hi, I'm Colleen. I was diagnosed end of August and biopsied first Monday and Friday in September which showed Accelerated stage. I was started on Hyrea to bring white count down from 230,000, then started Tasigna a month ago. I live 20 miles North of Pittsburgh,PA. I have HIghmark,not UPMC insurance which seems to have the better choices of Oncologists. My pcp referred to my Dr. I don't know anyone to ask, but I don't trust him.  Like the previous poster, I have done most of the research and Trey's blog has been most helpful!  I don't like that on a Monday,in his office, he attempted 3 times to biopsy my bone marrow with just some lidocaine to numb me. I didn't know I had a choice to have it done with a team with CT to guide them to exact spot instead of him fishing and so much pain.  After 3rd attempt I told him to stop. It hurt!! I've since told him I'm still upset that he did that in his office and didn't tell me the alternative. When the team did it they gave an IV, I was awake,but they were done in 7 seconds.  They all said it's barbaric the way I had it done on Monday,so.... My Dr. said no one ever said it hurt really bad before,so.....  Since Tasigna, my wbc have dropped to 40,000, but side effects of itchy scalp driving me crazy. Dr. says no one has ever had that complaint before. My husband and I had to request an EKG but Dr. said he was going to do that after a few weeks on Tasigna, not before?   Any help would be appreciated as to what to do considering where I live and Highmark insurance but don't like this Dr. He has already said I will remain on meds for my entire life!  I just barely reached the accelerated stage by 1  

thanks for reading

 



#15 snowbear

snowbear

    Advanced Member

  • Members
  • PipPipPip
  • 176 posts

Posted 21 October 2015 - 11:57 AM

Hi, I'm Colleen. I was diagnosed end of August and biopsied first Monday and Friday in September which showed Accelerated stage. I was started on Hyrea to bring white count down from 230,000, then started Tasigna a month ago. I live 20 miles North of Pittsburgh,PA. I have HIghmark,not UPMC insurance which seems to have the better choices of Oncologists. My pcp referred to my Dr. I don't know anyone to ask, but I don't trust him.  Like the previous poster, I have done most of the research and Trey's blog has been most helpful!  I don't like that on a Monday,in his office, he attempted 3 times to biopsy my bone marrow with just some lidocaine to numb me. I didn't know I had a choice to have it done with a team with CT to guide them to exact spot instead of him fishing and so much pain.  After 3rd attempt I told him to stop. It hurt!! I've since told him I'm still upset that he did that in his office and didn't tell me the alternative. When the team did it they gave an IV, I was awake,but they were done in 7 seconds.  They all said it's barbaric the way I had it done on Monday,so.... My Dr. said no one ever said it hurt really bad before,so.....  Since Tasigna, my wbc have dropped to 40,000, but side effects of itchy scalp driving me crazy. Dr. says no one has ever had that complaint before. My husband and I had to request an EKG but Dr. said he was going to do that after a few weeks on Tasigna, not before?   Any help would be appreciated as to what to do considering where I live and Highmark insurance but don't like this Dr. He has already said I will remain on meds for my entire life!  I just barely reached the accelerated stage by 1  

thanks for reading

I see Dr. Elana Bloom in Pittsburgh.  She's at Shadyside Hospital, but independent and I do believe that she takes both UPMC & Highmark insurance.  She stopped doing BMB's after having hip surgery so they are all done in Radiology with sedation. It's wonderful, really.  Having my teeth cleaned at the dentist is more uncomfortable.  



#16 Antilogical

Antilogical

    Advanced Member

  • Members
  • PipPipPip
  • 284 posts
  • LocationPittsburgh, PA

Posted 21 October 2015 - 01:20 PM

snowbear - A lot of doctors that are associated with UPMC also accept BC/BS/Highmark insurance.  Have you looked at your specific plan to see who is in/out of network? 

 

I see Dr Hou over at Hillman.  I like him a lot.

 

As far as BMBs go, it's all about the skill of the technician. I had 2 of them with Lidocaine only.  The 1st time, I felt a few zaps during the aspiration part and they had to keep giving me more and more lidocaine.  The 2nd time, they numbed me up perfectly, and had me lie on my stomach to give them a better angle.  I felt nothing.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#17 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 21 October 2015 - 01:28 PM

 I felt nothing.

 

lucky you Antilogical. ... my first BMB was my last BMB unless they sedate me


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#18 sunshineC

sunshineC

    Advanced Member

  • Members
  • PipPipPip
  • 65 posts
  • LocationNottingham, PA

Posted 21 October 2015 - 04:13 PM

Hey Snowbear.  I had very bad experiences with my first doctor.  He was 'supposedly' very good.  I would ask basic questions and he would literally shrug his shoulders.  Also had a big issue with one of his nurses.  My daughter was not happy with this guy right from the beginning.  I was coming along very well so was thinking that I only had to see him every 3 months anyway...  And then it hit me that if something were to go wrong, I had absolutely no confidence in this man at all.  I live just over the border of PA from MD.  My daughter said why are you not going to one of the best cancer hospitals in the country when you're lucky enough to live that close to it?  Very good point.  I don't know about a lot of things all these other people on this site do.  I just started doing internet searches.  I picked Dr. Doug Smith because I saw that he was involved with CML Research.  Been going to him for a while now (about a year) and I couldn't be happier.  It feels so different to have someone you trust, listens to what you say, and cares about quality of life.  The first onc had me believing that all of my side effects were just in my head, that Sprycel doesn't cause any side effects worth mentioning.  Any problems that I 'thought' was the TKI, I would just have to deal with.  Period.  He gave me no hope whatsoever.  One of the first things Dr. Smith talked to me about was quality of life and that it was very important.  Worlds apart.  I drive about an hour to get there.  I would drive more if I had to.  Soooo worth it.



#19 colleen01

colleen01

    New Member

  • Members
  • Pip
  • 5 posts

Posted 21 October 2015 - 05:33 PM

thanks Snowbear and Anitlogical. I will look into the name you mentioned.

#20 RayT

RayT

    Advanced Member

  • Members
  • PipPipPip
  • 42 posts
  • LocationSyracuse NY

Posted 21 October 2015 - 07:36 PM

When I was dx'd with CML in January 2014 and told I needed a BMB, I asked my hem/onc, "Have they changed the procedure since the last one I had for Hodgkins staging in 1982?" When he said "No," I replied, "You're not getting a BMB from me unless you knock me out." End of discussion, BMB performed by IR team using Versed or propofol. (I don't remember which... B) )






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users