Switching Drs

[K-itty]

In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed with my own health care. I grieved for the loss of a Dr that I have spent the last 5 years collaborating with on my health. A Dr. who took his time to get to know me personally and didn't treat me like a statistic. He was not all about the numbers and was genuinely interested in working with me managing my health. He respected my intelligence and knew that I didn't take my health lightly, but understood that it was important for me to have a say in the direction of my health care. His patients have been divided among 3 other oncologists at the clinic...

My first meeting with my assigned specialist did not go well. 😐 She came into the waiting room and immediately told me the "drug" was not working for me. The "drug" being Jakafi. Having only been on Jakafi for 2 months at a very low dose, I disagreed with her and stated I felt good about my platelet drop even though maybe not as drastic as she was looking for. BTW, she was also referring to labs from a previous month and not the current labs I'm required to have prior to my visit..She was very intimidated when I mentioned this. She also kept repeating, "My" patients have to have these numbers! "My" patients, etc...! I kept wanting to say, " The last I checked, I was still a patient of my previous oncologist"! At the end of our visit, she said that if I was dissatisfied, I should seek out another specialist. The only other specialist in that clinic that I am able to see due to the others having patient overload, is my previous oncologists PA, whom I respect. However, I am required to see the specialist whom I butted heads with, every other visit.

So, what's the problem you ask? I feel that with the currently assigned specialist, I will not have any say in the direction of my health-care; I don't like being dictated to. I respected my previous oncologists opinions, but was given the opportunity to express mine as well.

I am anxious about the process of searching for another specialist- someone who is interested in me as a person not just another

statistic. My previous oncologist was a rare find, I think, I mourn the loss.

Thank you for allowing me to rant.

[hunter5582]

The new, hopefully temporary, doc's attitude and demeanor is certainly not acceptable. I would not be willing to see a doctor that treated a patient like this. I would dismiss that provider immediately. Perhaps you can see the PA temporarily. I am not sure why you would have to see anyone other than the PA for the time being. Simply let the practice know the substitute doc is not acceptable due to her poor patient management skills. if your old doc does not return, it is time to move on.

I have been very foruntate to have several excellent hematologists and MPN Specialists. Respect for the patients is a minimum expectation. I found my MPN Specialist using this list. mpnforum.com/list-hem./

This is another list to consult. pvreporter.com/mpn-speciali...

Wishing you success in accessing the care you deserve,

[Adlon57]

Nothing like a good rant to clear your 'system', good luck!👍

[penpen18]

I’m so sorry. I was diagnosed July 2021 and originally given this one male oncologist, switched before meeting b/c didn’t get good vibe from his video. Second one was a very bossy older woman, didn’t come prepared to my appointments- scattered and somewhat dismissive. After two visits, switched. Trusted myself. Finally have a team, responsive, kind, reviews options when switching drugs and responds to my concerns..

Hang in there. Keep speaking up for yourself. I’ll be thinking of you.

[Wyebird]

Rant away, I’d be devastated if I had to change clinics. I don’t see the same heamo every time but 1 of a team.

I think what you said about your previous oncologist was a lovely tribute. I think he’d really appreciate knowing that’s what his patients thought of him.

As for a different specialist I hope you can either mend bridges or find someone more suitable.

[Solyesh]

I think it is very important to set expectations up front. If you can find a way to work with the new (temp) doctor, great - if not then definitely let the clinic know and let them know why you will not be working with her.

Be clear on what your treatment goals are and what is important to you. Of course you will give due consideration to her input (when it is current, knowledgeable and delivered with your treatment/life goals in mind) but this is your life and your journey.

[George1976]

If you’re feeling good on jakafi keep going. Platelet count is not important as per a very smart doc I used to see. For me jakafi made me feel like I was on amphetamines (stimulants) and if I missed one dose I would have unpleasant withdrawal symptoms.

[luvinretirement]

So sorry you are going through this, but health care providers do come and go. I was recently informed that a JAK2 Bone cancer specialist I was seeing was moving on to another opportunity, and I was passed on to a PA. I will be transitioning to a new specialist and will meet him soon enough. The "bedside manner", and willingness of any care provider to work with their patients in an empathetic, cooperative manner, is critical, and your replacement sounds like she never learned that. You never get a second chance to make a first impression as they say, and I would can her immediately and find a replacement. As for the Jakafi, I found that it worked extremely well for me in controlling my counts, but I had to move on to another drug last year due to Jakafi's known propensity to increase the incidents of certain skin cancers, which is problematic for me. I do wish you well in finding another specialist and hope your results on Jakafi are what you want.

[K-itty]

Thank you all for your replies to my rant and especially for the lovely support. As you all know, this is an individual journey and no two of us are alike in our response to our treatments. That's absolutely why it's necessary to be an advocate for your own health care. You people are great! Many thanks and hugs!

[ainslie]

Well, first thing is your good doc may return, second thing is the doc your seeing now sounds worth avoiding, apart from attitude two months on Rux isn’t long and for some on Rux platelets can temporarily rise before falling, mine took many months and Rux dose increase to get to 200. Third thing is if you have to find a new doc, keep calm, I always used to feel stressed when I heard a Haem was leaving, I’ve had about 10,in 13 years, to be positive you may find an even better one. But, don’t just accept bad treatment, be polite but very determined and persistent until you find the treatment and doc you deserve and are entitled to.

[ETphonehome]

I know exactly how you feel K-itty - this has happened to me a number of times and incredibly frustrating . I hate how as MPN patients, our health & wellbeing is dependent on the luck of the draw and who's care we end up under.