Getting nowhere with current Hematologist

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.

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

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.

Such nice comment about progression, you don't know my labs. I am under the care of a very good oncologist and he knows what I went through with HU and I think he knows what HE is talking about when he said he is researching a med not in the chemo class for possibly down the way. I am on a baby aspirin and the dietary changes I made and I am happy for now with my platelets staying stable and will continue to do as I am as long as it lasts. You seem very angry with your comments or by what is going on with your treatment and had to try and rain on me. I am constantly on line checking on ET and know what I am reading. I was in the medical field working in the lab for years. I know this could end or not with my platelets staying stable but for now I am happy and enjoying it.

Hi @jello13577 ,

I eat healthy and was happy when my platelets went down without meds, but then my O/H sent me a memo saying I “might be transitioning” to worse condition. My red cells and hemoglobin were down that one time too. Strangely, my red cells, hemoglobin, and platelets went up again without me taking meds so I am basically the same as when I started with the new insurance I chose. I am blessed to feel fine and have no symptoms. I do take 81 mg aspirin qd now and have no clot history and normal BP except in doctor’s office. I take my BP each morning at home and the highest in many months at home with new approved monitor is 124/76, but it is usually less. It was 110/60 last time I checked it. My primary doc is fine with my BP and me taking it each morning at home. He says I have a White Coat syndrome. He also said platelets can vary with stress levels. He does not treat blood cancer so I am stuck with my O/H.
I am very interested to hear what your O/H shares with you for non-chemo options possibly down the road for you. I have CALR1 mutation.

Have a pleasant rest of your weekend and stay positive.

Thank you pearl for your comment. My hemo is norm and my RBC are only a few points low which my H/O is said it's no big deal. I also have the white coat syndrome because at home my BP is norm. I see my new PA in a couple weeks and the Dr end of August so I will see what he says. I will keep you posted on the med he comes up with. I feel so much better though since coming off HU. I also have CKD since I was a kid so I am kind of working with both diseases so when I don't feel good I kind of attribute it to my kidneys. Anyhow this ET is all a day at a time and right now I am happy with my results. Take care and good luck on your tx. Janet

Glad you are in a good place now and feeling well. I have had ET x 17 years. My dad also had it. Just sharing my experiences and info in hopes it helps someone else. Not trying to scare people about progression, but it's part of the landscape for many of us. I do try to restrict my comments to others whose treatment goals and experiences on here are similar to mine. I'll certainly try do better with that. Best of luck to you.

Thank you for sharing your story. I am happy to hear that your healthy lifestyle is working. I am curious if you do any stroke risk monitoring looking for pattern changes to blood pressure or heart rhythm and if your doctor would recommend that. I am currently only on baby aspirin, but was curious if monitoring would provide any value. I will ask my doctor at my next appt, but am curious what others have done or what other doctors recommend. Thank you for sharing.

Vent all you want here. Firstly, your getting it out and you have people with the same rare disease you have that may have insight that will help..I don't recall you offering your age. I'm 77 wit polycythema Vera with 2 positive JAC2's..I was diagnosed 2 years ago but I'm sure ive had it longer. I had noticed that my numbers were high over time, my primary kept saying dehydration.. then I had a TIA went to emergency room, had every test known to man was done and they couldn't find anything. I got home after the ER visit where I was told everything was fine, I notice my lab numbers were over normal so i said to myself I'm making an appointment with a hematologist..He told me PV even before the postitive JAK2..When I asked a certain question he would say, "don't ask me questions like that.' on two separate occasions ...I decided he wasn't a good fit. I'm being followed by MDAnderson for breast cancer since 2009 so I went to hematology there..The difference in attitude and care was nothing short of amazing. The numbers are important for sure however I'm told symptom's are extremely important to gage this disease too...Their response is within hours and if it can't be handled over the phone or MY CHART which it mostly is, I go into MDA. Please, please seek out another hemotologist at a. major academic institution..They have hemotologists that deal only with PV patients and as another said most of your care can be done virtually....I get the feeling you don't trust your care, I don't blame you in your case I wouldn't either . Advocate for yourself...

Sorry to hear about your experience. Hope your health improves very soon. Are you in the US?