You are here

Finding a new hematologist/oncologist

Categories:

How does one go about finding a new doctor if your current one does not seem to be a fit?  It is not like I’m knowledgeable of the oncology community.  I have checked what I need to do on the insurance side, but no idea how to find a potential new doctor.

I don’t doubt the technical competence of my current doctor as far as the measures of CML and the options for treating it.  My problem is that I’ve had quite a few side effects, which have fallen outside the library of what he considers to be side effects of these drugs.  My quality of life is at a level I’m having trouble imagining continuing the meds 2 years to TFR, and I’ve not reached undetectable yet so that clock isn’t even started.

I’m hoping to find someone willing to work with me on mitigating the side effects.  Given my side effects so far I’m not expecting to eliminate them, but I’d like them taken seriously and some help in managing the situation.  I’ve responded extremely well as far as my PCR results so I’m really not all that worried about controlling the CML.

I’m in the northeast US, Boston area, so there should be plenty of options if I just knew where to look.  I can even travel to NYC if I find a good match there (that takes my insurance).

Thanks,

Maria

Maria, 

The two hospitals that I know are the best on the east coast are Sloan Kettering and Johns Hopkins.  Not sure about Kettering, but Hopkins is a team concept and multiple docs get a look, including other specialists.

 

best,

Jon

https://www.nationalcmlsociety.org/cml-specialists

These are the official cml specialists listed. Hope it helps.

Found this info/link in a posting on the lls.org website: The American Society of Hematology (ASH) website has a helpful search tool to find a hematologist. https://www.hematology.org/Patients/FAH.aspx

Hi Maria,

Are you in at Dana Farber? I am also in the Boston area and am treated there. My doctor is Martha Wadleigh. I like her, although she is a bit resistant to the lower dosage theories. She does listen to side effects though and believe in the balance of treatment and quality of life. 

Hi.  I can recommend Gail Roboz at Cornell or really any of the Drs listed for Cornell or Penn.  My Dr isn’t listed but she is top notch.... Selina Luger at Penn.   For me,  I live close to Philadelphia and New York would be harder especially with kids to schedule around.   

I know these aren’t near Boston but wanted to give what info I can.

 

good luck! 
 

 

Thank you all for your suggestions.  I had looked at the CML Society list, which gives me a couple options in Boston.  I was not sure how the list is created.  Do the doctors submit themselves are are they recommended onto the list.  I'd not seen the American Society of Hematology list.

I do now have one referral to a doctor quite close that will hopefully work out.  I'll hear if I can get in there hopefully next week. If not you have all provided me with a number of other options.

Meanwhile the forum has provided me invaluable information in dealing with my care and treatment.

Maria

Maria:

It would help if we had some more history and data:

When were you diagnosed?

What TKI are you on and at what dose?

What is your PCR result history?

What are your specific side effects?

 

You may or may not be a candidate for dose reduction, which could help with the side effects

On the actual testing side I've done very well.  WBC from 160 to within normal ranges in about 3 weeks, BCR-ABL1 of 0.2933 on 7 October, 0.08 on 18 November, not quite 6 months into treatment.

I was diagnosed in late May 2019.  I started with nilotinib.  I don't recall the dose, but the standard 2 pills morning and 2 evening.  Within 2 hours of taking the first nilotinib I felt like I'd been hit by a train.  That subsided a bit, but any exercise (including my normal chores taking care of livestock) had my heart pounding like it was trying to beat its way out of my chest.  I had to work slowly, take breaks, and rely on friends helping me quite a bit.  I also had lateral balance issues and gut problems.  Looking through my notes from this summer, also jaw pain, headache, sun sensitivity, tinnitus, pulsing in my ears, and rashes.  After two months on nilotinib I had a TIA end of July and was taken off. 

While in the hospital with the TIA they noted my TSH was up so increased my thyroid med.  I'd been on a low dose of thyroid med before I was diagnosed, which was stable and working for me.  In fact my thyroid levels were tested as part of the panel of blood tests that found the high WBC in May and were good.

Early August I was put on Sprycel 100 mg.  By the end of two months I was so lightheaded I did not trust myself to drive and was getting rides.  I also was very short of breath and low energy, tight/pinching chest, odds and ends of funky pain and nausea but that's livable, weak, speaking problems, and dropping things with my left hand.  I went for a dose reduction to 50 and got it at my appointment early October.  I resolved to wait and give time to see how the reduction panned out.  During this time I continued to experience a tight/full chest, some chest pain, difficulty speaking sometimes, odds and ends of pain, and being short of breath to various levels.  My normal activities were limited but I was functional.  Further thyroid testing with my primary care doctor said I was still low thyroid, but due to some increases in side effects when I increased the medication for that I discarded the increase.  Retesting again recently and there is a stronger indication I need to increase my thyroid meds, but again that seems to exacerbate my existing symptoms so again I've had to pull back.  

I'm not convinced my case is all that complicated.  Certainly I respond well to the drugs as far as reducing the CML markers.  I've not had some of the typical problem side effects like low blood counts.  But I am having side effects, and some of them are frightening with my increased chest pain, bouts of trembling of my chest, my inability to manage my thyroid properly.  The speech and lateral balance are bothersome as well though at least those don't make me wonder what the day will bring.  I can live with them if need be.  In response to my reporting these problems my hematologist has been consistently dismissive, often openly so, saying these are not side effects of the drugs.  This has left me working with my primary care doctor, and then a neurologist and speech therapist (who both feel the problem is the drug), and now I'm being referred by my PCP to a cardiologist and they are trying to figure out what tests for my lungs/heart.  Likely an endocrinologist will be next if we can't get the thyroid problem sorted. 

In all of this I feel there is a disconnect with the hematologist.  I'm not expecting miracles or to feel like I did before I started these meds, but some of these side effects are beyond what I'm willing to just ignore.  Until the CML I was one of those annoying folks who popped out of bed high energy in the early morning, no aches and pains.  Hell I'd be happy to go back to how I felt the day I was diagnosed.  I'd like to be able to have a conversation about these side effects without simply being told it is not because of the drug.  I don't doubt my doctor's ability to treat the CML, but I need someone willing to work with me on the fallout of the treatment.  

My next appointment is mid January and I plan to ask for another dose reduction, to 20.  

My prescription:  Get a new CML doctor.  Having said that, I respectfully submit that it doesn't sound to me like these are TKI-related side effects.  It sounds much more plausible that it's thyroid-related, possibly cardiovascular-related.  We have to remember that a lot of other bad stuff can happen to us while we're on TKI's and it is just random.  It can just happen with age - even a little bit of age (like the terrible and dangerous Forties, if you're female).  I have read your words carefully, and, as a fellow thyroid supplementer (since a subtotal thyroidectomy in 1979), I feel instinctively that's where your problem lies.  It takes a lot of tinkering to get it right, and your body can change (very possibly because of the TKI's, I'll admit).  I hope you get a better endocrinologist and cardiologist than your CML doctor, because even if he's right, he's not listening or helping or respecting your feelings and intelligence.

I agree the thyroid imbalance is very involved in all this.  There are studies out there that link some issues with thyroid with TKIs so I'm guessing the meds have aggravated the situation.  I want very much to get that settled but so far three attempts to increase my thyroid meds have been followed by increased side effects.  So at least on the surface it seems the increase in levothyroxine causes the increase in my chest pain and trembling.

At this point I am not inclined to believe my problems are random or unrelated to the treatment.  Indeed on the short drug vacation between nilotinib and dasatinib I felt great.  When I started the dasatinib again I quickly began having problems, a somewhat different set of symptoms but onset began within a couple weeks of starting the dasatinib, and increased gradually.  Now as I wait for the chest pain to back off before I restart my dasatinib many of these symptoms are going away.  I'm 4 days off at this point.  I'm happy too.  I did not realize how much the drug affected my mood until the first morning after not taking it I woke with a smile.  I'd attributed the entirety of my foul disposition to the thyroid problems and the situation.  It will be very hard to go back to taking the drug, but I must.

A couple of things:

1.  Your response to the medicine has been excellent as you say, eclipsing MMR in three months.  I did the same thing on full dose Tasigna but I also had unusual side effects (40+ squamous cell skin cancers, swollen salivary glands, heart palpitations, dry mouth, mouth sores, folliculitis, tinnitus, etc etc) and my oncologist also insisted these were not TKI related, to which I said BS.  I literally fought with him for dose reduction and he finally relented, so 6 months into treatment sitting at PCR of .006% he allowed me to cut dose by 25% and not a single skin cancer since.  The other side effects persisted so we cut dose 2 more times over the next 6 months to 25% of original starting dose (150 mg once per day) and I am still on that dose today.  I was tested every 6 weeks during this time and my PCR kept improving and I have now been at <.003% or undetected for 2 1/2+ years. I still have a few side effects, most notably heart palpitations and mild dry mouth, but they are manageable and tolerable.  If things stay the same PCR-wise, I intend to try TFR in 18 - 24 months.  I believe that there is some positive correlation between severity of side effects and depth and speed of response to TKI's; in other words, the better your response the more sensitive you are to the drug and thus the worse the side effects are. You should definitely reduce your Sprycel dose to 20 mg assuming you next PCR is still MMR or better.  There are lots of folks in this forum who are on that dose and doing just fine.  If your PCR remains stable or improves, you could even go to 20 mg every other day (like Scuba).  If this still doesn't work, maybe you should try Bosulif. Oh yes, and you also need a new CML doc, one who understands that TKI's are toxic, do cause real side effects in many patients and the goal should be to find the lowest possible dose that still keeps you at MMR or better.

2.  I haven't had thyroid issues ever and the Tasigna has not changed that.  My wife does have hypothyroidism and was on Armour Thyroid for years.  Her GP switched her to levothyroxine and her TSH levels started vacillating all over the place so she switched again to NP thyroid, which in some people has fewer side effects.  You might want to consider that to see if you tolerate the higher dose better.

3.  You should definitely have a full cardio workup as there could be something going on that is not TKI related.  I had a full workup about 18 months ago (ECG, echocardiogram, nuclear stress test) and everything is fine.  I now know my palpitations are benign and that is comforting even though the palpitations are not :)

Whatever you do, never stop advocating for yourself.  Most oncologists deal with patients who have poorer prognosis than we CMLers, so many think we're just whiners when we complain about side effects.  Further, side effects are under-reported - my oncologist didn't report mine even though it became abundantly clear that they were from the TKI. I have found my dermatologist and my GP to be much more understanding and willing to work with me to deal with my particular issues.  Good luck - I really hope you can figure this out.

Oh and one more thing - you are still in the first year of treatment.  It takes the body a while to adapt to TKI's and some report that the severity of side effects diminishes over time even without dose reduction.  So hang in there and keep fighting.

I did have a cardio workup when in the hospital after my TIA and all was good.  I also recently had a stress test in October at my primary care doctor and that went well.  

I've been off the Sprycel for 4 days now.  I've some lingering low level chest pain but have had no more incidents of trembling and spreading pain so I'll start taking the Sprycel again tonight.  I hate to do it as I did not realize how much it affected my mood until I dropped it.  Wow I'm so much happier.  And after three days off I was able to actually run on my walk/run instead of the miserable little shuffle I've been doing for the past few months.  It was glorious but I suspect today will be the last of that for a while.

I also learned that it only takes a day off Sprycel for my speech problems significantly abate.  I'm on day four now and back to flying along effortlessly when I talk.  Likely not everyone I know will think this is a good thing!

If your BCR-ABL1 labs are still on the excellent downward trend you've achieved so far, maybe your doc would agree to a 40mg per day prescription?  That prescription comes in a bottle of sixty 20mg tablets.  At this stage in your treatment, it may be better to have a lower daily dose than take breaks due to unacceptable side effects.

I'm on 50 mg now.  I was thinking to ask for 20, but maybe I should just ask for a lower dose.  That request might be more acceptable to my doctor.  I want to also say I'd like to work down to the lowest dose that is effective.  

The doctor said he does not consider any of this side effects from the drugs so I'm expecting an uphill battle.

Maria

The doctor said he does not consider any of this side effects from the drugs so I'm expecting an uphill battle.

So what does he think it is?  Effects of CML?  Coincidence?  Psychosomatic?

I've been at this CML thing for seven years now and when something goes wonky with my body I always wonder if it's the normal aging process or a TKI side effect.  I think it's often a TKI side effect, except for the whitening and thinning of my locks.  cheeky

He has also been clear he does not consider any of these side effects from the CML.  So that just leaves coincidence and psychosomatic.  This all leaves me feeling unsafe whenever I have symptoms of a more disturbing nature, like radiating chest pain and vibrations, and am left trying to figure it out with my PCP.

I have an appointment in a couple weeks where I will address this disconnect directly.  I don't hold a lot of hope as I think it is his nature, or in the case of the psychosomatic option how he sees me.  However it is worth a shot.

Maria

One other option would be to try imatinib.  I didn't experience any thoracic side effects like I do on dasatinib. You might not need the recommended starting dose of 400mg/day since your BCR-ABL1 level is so low already.  IIRC 300mg/day of imatinib had nearly the same response rate as 400 did in the trials of Gleevec.  And it comes in a handy bottle of ninety 100mg tablets. You may be able to start with a dose of 200mg/day and work up to 300 if you're feeling good with it.

Update on this.  I had another appointment last week.  I decided to go off the Sprycel 2 days before the appointment so that I could communicate better.  I often have trouble speaking on these meds, difficulty finding words, speaking very slowly.  I took 4 days off the Sprycel in December for radiating chest pain with some other disturbing symptoms.  That was the first I'd taken a break from Sprycel and I learned that some of my problems diminish dramatically in just 24 hours from the skipped dose.  I woke up happy, none of the lateral instability that has dogged me, and able to speak much more easily.  Three days off and I could actually run easily!  Thus my decision to stop the Sprycel just before my appointment so I'd be better able to communicate.

My appointment was a completely different experience.  Where I had felt unheard and dismissed I was easily interacting and conversing.  I was completely comfortable with my ability to communicate, and good with the information I got in return.  When I'm having trouble speaking it runs deeper than speaking slowly.  The effort to find words can overwhelm my mental resources leaving me unable to respond in real time.  I've been able to compensate for this mostly at work, writing verbose notes for meetings and relying on written communication.  I did not realize how completely it blocked me from having the type of conversation I needed to have with the doctors.  Another problem is that I think the Sprycel makes me depressed.  I was surprised by how happy I was so quickly when I dropped it.  

I really had no idea how much my communication and social abilities had changed.  Now that I do I've a couple months to come up with some compensatory strategies for communicating when on the Sprycel.  My doctor was open to reducing the dose to 20, but first we need to wait to see where I'm at after an adjustment to my thyroid meds takes effect.  

I do have an appointment with another doctor, which I plan to cancel.  My current team is willing to work with me on this.

Sounds like real progress with your doc.  Good for you for persisting.  That's what I had to do with my doc and it finally worked.  Here's hoping that you can get to 20 mg Sprycel soon and your PCR stays low.