1. < Blood Cancers & Disorders

Getting nowhere with current Hematologist

Posted by withhope @withhope, May 15 2:45pm

Guess I just need to vent a little bit here… I’ve been seeing the same hematologist for over two years and I’ve made zero progress as far as getting proper treatment for symptoms/side effects for my PV!
This hematologist’s main focus has ALWAYS been my “numbers”. We began treatment with phlebotomies but they did not help. Then I took Hydroxyurea for 18 months which caused multiple problems and side effects and more - but this doctor was “satisfied because my numbers came down.” During those 18 months, my quality of life greatly diminished to the point of me being wheelchair bound and needing home-nursing care for the last 14 months. Nothing I said or requested or discussed with this hematologist ever helped. Whenever I was in need, she was often unavailable or would not respond at all. Plus whatever we discussed at my appointments was often mis-quoted or not acknowledged at all in her summary notes. Needless to say, in addition to now being chronically ill, the added stress and frustration from dealing with this particular doctor has been unbearable!
At my last appointment, her only comment was: “well I guess we were too aggressive with treatment and your quality of life stinks but (she) has no answers as to what to do about that now.”
Unbelievable!!
I typically am a very positive person and I do not like to share negative experiences…. but as I said, I just needed to vent. I kept praying that this hematologist would eventually understand what I was going through and would help me, but I was wrong about that.
Just wondering if anyone else has had similar experiences with a very “incapable doctor” and what did you do that was helpful?
My options for finding another specialist are minimal as the closest ones are 6-8 hours from my home.
Any suggestions?

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1pearl | @1pearl | May 26 2:45pm
In reply to @nohrt4me "They have differentiated treatment for CALR's slightly, and I'm hoping that all of us who were..." + (show)
@nohrt4me

They have differentiated treatment for CALR's slightly, and I'm hoping that all of us who were diagnosed with CALR right out of the gate will be studied and help refine treatment further. My clinic used to send my records to Mayo for study. However, last year it became part of the University of Michigan health system, which has caused major disruptions.

Docs also tend to let platelets run a bit higher in CALRs before starting HU, depending on age. CALR puts you in a low to moderate. If a hemo understands the difference between CALR and JAK2 patients, it's one way to tell if he's well-informed about MPNs.

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Hi again nohrt4me,

Yes, it would be wonderful if patients like you with CALR doing very well and for so many years would be studied. I know there are much fewer CALR patients than a JAK2 patients as CALR only being discovered a little over ten years ago, so I am assuming it will take time, even if somehow your data was shared from your new health system.
As always, thank you sharing your wisdom.
Hope you are having a very enjoyable Memorial Day!

P.S. I really do not think my O/H knows much about the difference between CALR and JAK2 patients and she does not like me asking her questions. 😒 I am hoping for a better experience in August when I see at least a bone marrow transplant specialist as I would assume he knows more about it. I researched my choices through Kaiser in Los Angeles. He seemed the best of what I was offered.

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jello13577 | @jello13577 | 1 day ago
In reply to @ruthiek519 "I am new to this group, having been diagnosed with PMF within the last month. I..." + (show)
@ruthiek519

I am new to this group, having been diagnosed with PMF within the last month. I am in the process of switching to a new hematologist as my current one is not providing me with the information or support I need. Most of what I've learned has been from my own research on sites like rare diseases.org, the Cleveland Clinic and Mayo Clinic. When I asked the hematologist about the impact on my lifespan his reply was along the lines of "Well, I can look at the charts". Totally unacceptable.
I just turned 72 a week ago, worst birthday ever 🙁 I am trying to come to grips with a disease where currently available treatments address only the symptoms and not the underlying condition and I'm struggling. So I am excited to find this online support group and looking forward to commiserating with others with the same and similar diagnoses.

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Hi,
Went through the same thing just this past March. Could not stand my previous hematologist and PA. My Dr was all numbers and could care less how hydrea was making me feel, the PA rolled her eyes Everytime I explained how sick I felt. I started on hydrea January 2024 and feel I lost a year of my life being sick constantly. I cried and laid on the couch a lot because I had no strength and felt like I had the flu everyday. My sister and I would go shopping and out to lunch and it was a total force. I started out on hydrea 7 days a wk, then 5 until I pushed to one day a week and the side effects never stopped. I asked my primary Dr if it would be safe to stop the med until I got an appt with a new oncologist he referred me to and he said there would be no harm because I also continued my baby aspirin which I had taken for over 20 yrs just because it was the thing back then. I stopped hydrea in Feb 2025 and had my appt with the new Dr 4 wks later. That four wks I was still sick as the hydrea left my system. My platelets stayed completely normal at 405. I told my new Dr I will not go back on hydrea and he agrees for now and said let's watch and see and if my platelets start increasing he will research a diff. Med not in the class of hydrea. I have had my platelets checked 4 times since seeing him and last result went down to 392 I was shocked. I researched a lot about ET and found a lot of dietary solutions as well. I drink a qtr glass of mo sugar 100 percent grape juice every morning and drink green every morning plus when I am really thirsty pure cranberry juice in carb water. I eat a small piece of 70 percent or higher dark chocolate and I watch the rest of my diet around 50 percent. Grape juice is known to help prevent stickiness of the platelets and the other drinks and chocolate are known to decrease platelets. I really like this new Dr and he is easy to talk to as well as his PA. I know he would like me to be on a med but understands how bad I felt on hydrea so for now we wait and I hope this continues well with the dietary changes I made plus a lot of prayers. Hope you find someone new that you feel comfortable with and you feel better. Janet

REPLY
1 reply
nohrt4me | @nohrt4me | 1 day ago
In reply to @jello13577 "Hi, Went through the same thing just this past March. Could not stand my previous hematologist..." + (show)
@jello13577

Hi,
Went through the same thing just this past March. Could not stand my previous hematologist and PA. My Dr was all numbers and could care less how hydrea was making me feel, the PA rolled her eyes Everytime I explained how sick I felt. I started on hydrea January 2024 and feel I lost a year of my life being sick constantly. I cried and laid on the couch a lot because I had no strength and felt like I had the flu everyday. My sister and I would go shopping and out to lunch and it was a total force. I started out on hydrea 7 days a wk, then 5 until I pushed to one day a week and the side effects never stopped. I asked my primary Dr if it would be safe to stop the med until I got an appt with a new oncologist he referred me to and he said there would be no harm because I also continued my baby aspirin which I had taken for over 20 yrs just because it was the thing back then. I stopped hydrea in Feb 2025 and had my appt with the new Dr 4 wks later. That four wks I was still sick as the hydrea left my system. My platelets stayed completely normal at 405. I told my new Dr I will not go back on hydrea and he agrees for now and said let's watch and see and if my platelets start increasing he will research a diff. Med not in the class of hydrea. I have had my platelets checked 4 times since seeing him and last result went down to 392 I was shocked. I researched a lot about ET and found a lot of dietary solutions as well. I drink a qtr glass of mo sugar 100 percent grape juice every morning and drink green every morning plus when I am really thirsty pure cranberry juice in carb water. I eat a small piece of 70 percent or higher dark chocolate and I watch the rest of my diet around 50 percent. Grape juice is known to help prevent stickiness of the platelets and the other drinks and chocolate are known to decrease platelets. I really like this new Dr and he is easy to talk to as well as his PA. I know he would like me to be on a med but understands how bad I felt on hydrea so for now we wait and I hope this continues well with the dietary changes I made plus a lot of prayers. Hope you find someone new that you feel comfortable with and you feel better. Janet

Jump to this post

Resveratrol, a substance manufactured from grapes, showed some effectiveness at reducing platelets, but research seems to have fizzled as interferon-based meds and JAK inhibitors like Jakafi were developed.

However, doctors don't prescribe HU alternatives often in the US because they are beyond the means of many patients. In 20 years, when the patents run out, they will be more affordable.

If you have ET and your platelets start showing a tendency to drop on their own (and especially if other counts are off) over the course of several months, that may be a sign of disease progression. Disease progression can make you feel crappy. So it's important to continue monitoring if you've decided to go off HU.

I sure wish that dark chocolate, red wine, watching "Fargo," knitting mittens, and reading PG Wodehouse would cure my ET! Sadly, there are no lifestyle "solutions" to a disease caused by a genetic mutation, though some of those things improve quality of life.

A heart-healthy diet and moderate exercise may reduce overall stroke risk. Avoiding food associated with inflammation may also help with symptoms. Still in the study phase last I heard.

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