Getting nowhere with current Hematologist

Does anybody know about venclexta that what they used to treat my cmml made my number go down

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.

Good morning @ruthiek519 Well, of all the gifts you could have gotten for your 72nd b-day, you’re wishing the diagnosis of PMF would have come with a gift exchange receipt, huh? Bad joke, I know. I’m 71 and can relate to getting news that wasn’t anticipated…and, having a doctor being less than helpful.

I’m happy you found Connect. Promise you won’t be alone here. ☺️ I’m posting a link for you with the search results for discussions with other members who have MF (PMF) so that you can pop into any conversation to ask questions or share your experiences.
Primary Myelofibrosis Search
https://connect.mayoclinic.org/search/?search=PMF
Your current hematologist sounds less than inspiring, so I’m glad to read that you’re seeking a 2nd opinion. It’s important to feel that your doctor is an integral part of your care team and not dismissive…just going through the motions.
While it is true that some blood cancers aren’t curable but often there are treatments which can help slow the progression of a disease. Sometimes they become more of a chronic condition we live with. MF doesn’t really have a definitive staging but has categories such as a low, intermediate, or high risk group to evaluate the type of treatment. So the first step is to determine your specific diagnosis.

Were you having symptoms that led to your diagnosis? What were the tests run to help confirm it? Did you have a bone marrow biopsy?

Thank you for your kind words. It's so comforting to know there are others out there like me (having my condition listed on rare diseases.org was kind of daunting 🙂 ). My only symptom was unexplained weight loss. I had occasional night sweats but have had them on and off since menopause so didn't attach any significance to them. When I had my annual physical with my PCP she did some follow-up tests because of the weight loss (thyroid, A1C and CBC) and my platelets were sky high and the only thing out of whack. I've lost 25 pounds in the last 4 months (I knew the extra weight I've been carrying for the last 15 years would come in handy 🙂 ).

I had a bone marrow biopsy with genetic analysis done at Mayo and I have the CALR and DNMT3A mutations and I'm currently on 1000 mg of hydroxyurea. I have an appointment on June 16th with the 2nd hematologist and will talk with him at that time about a possible consult with Mayo Clinic (I live in north central Wisconsin, about 200 miles from Rochester so not too bad a drive.)

BTW Thank you for the link to the PMF group. I re-posted my original comment there.

Hi @ruthiek519 ,

Happy belated Birthday despite getting the diagnosis none of us want. I think you will find many helpful people on this site. Lori is especially helpful. 😊
I am similarly frustrated with my situation to yours and my O/H. She told me the only cure for myelofibrosis is a bone marrow transplant but the risks for me doing a BMT right now outweigh the benefits. I am 65 and she first diagnosed me with ET on 1/10/2025 after routine blood work with my new insurance, Medicare Advantage through Kaiser. I had turned 65 and wanted to get a second opinion from another group other than my husband’s work insurance I was on as the hand orthopedist I saw with them did not know what I had in my finger and could only offer exploratory surgery which I did not feel comfortable doing. I needed a better idea of what is causing my very enlarged non-painful right ring finger proximal interphalangeal joint as it interferes with my handwriting. I have no other symptoms and took no meds. (Yes, I still like to write things down and not just put them into the cell phone or computer!)

Here is a summary of my experiences:
1/10/2025 I was told the first time I ever saw an O/H that I had ET as my platelets were very high. I asked her how could she be so sure since so little time frame checking me. She did not like that and did not want entertain my finger issue. I saw their rheumatologist who said she did not know what I had as my JAK2 test was normal. They kept doing checks on me and then my CALR1 mutation was found. So I asked O/H for a bone marrow biopsy thinking maybe that could shed some light on what I might have. She said it was not necessary but decided I could have one. I had also researched that Myelofibrosis and ET could occur with high platelets and CALR mutation. Then 2/10/2025 that O/H sent me a memo that she changed my diagnosis to primary Myelofibrosis because my fibrosis was graded 1-2 of 3 and I have unusual megakyocytes. I asked to see MPN specialist but got told Kaiser does not have one. The best they could do is let me see their bone marrow transplant specialist in Los Angeles. I have an appointment there in August. Strangely enough, taking nothing and doing nothing differently, my platelets dropped by 400 (but still high) and my hemoglobin dropped below normal the day of my bone marrow biopsy on the stat lab they ordered right after implying as the O/H sent in her memo 2/10/2025 that “I might be transitioning from prefibrotic Myelofibrosis”. She decided I could take baby aspirin ( first she said I could not take baby aspirin) as I had not chosen to take the Hydrea she initially prescribed for me, 500 mg twice per day with a follow up lab in two weeks. (For 30 plus years straight, I have weighed 107 plus or minus two pounds. I read that would be a pretty high dose for me to start with and I did not want the side effects.) I have been taking 81mg aspirin. I went for monthly blood labs and mysteriously my hemoglobin went back to normal by doing nothing differently. I just had a lab last week and my hemoglobin still is fine and my platelets are still high. I still have no symptoms and my risk analysis for myelofibrosis came back as low risk and very low risk on two methods that Kaiser measured. So I relate to your frustration!

Did you have the myelofibrosis risk analysis and grading done? If so what is it if you do not mind sharing? Also, what are your platelets, red cells, hemoglobin, and white cells on your lab results?
I hope you are feeling a little more peaceful now and are able to enjoy the Memorial Day holiday weekend. Stay positive!

Hi Ruth, I had to smile with your comment about the extra weight you’d been carrying the last 15 years coming in handy! Raised my hand in commaraderie with you on that…same for me. The weight loss was my first symptoms of my cancer though I was naive enough to think it was because my efforts were finally paying off! 😂

I’m also in north central Wisconsin and found it absolutely worthwhile to seek care at Mayo-Rochester, in case your hematologist #2 isn’t living up to your expectations. We don’t need to be best friends with our doctors but we should be able to expect a certain level of communication, empathy and guidance. The right practitioner is out there for you! Are you near a Marshfield Clinic?

I am a patient at Marshfield Clinic in the Wausau area. The 2nd hematologist is at the Marshfield Center and was recommended by a close friend of mine who is a PCP at the Marshfield Center, so I am hopeful it will be a good fit.

ET-CALRs have fewer clots but more likelihood of progressing to MF. I am in my 17th year with ET-CALR, and I worry about this more lately.

I think that in the course of any chronic disease you have plateaus of stability and then dropoffs to the next level of complications.

I feel I am getting older faster than my friends and really have to work at not dwelling on worst-case scenarios. Hard to shake that impending sense of dread. It's one day at a time for right now.

Hi nohrt4me,

Thank you for posting. I totally agree with you that we have to work at not dwelling on the worst case scenarios, and I suspect those with any MPN need to do that too. The added frustration for me is that they do not know all that much about CALR mutation as it was discovered fairly recently, probably after you were first diagnosed with ET! I keep finding scientific articles reporting what seems to me to be saying that they do not have a treatment with medication to induce remissions per Dr. Mascarenhas for Myelofibrosis. Also, CALR is treated like JAK2 still as they only have meds for JAK2 with enough data showing positive reduction of symptoms. Bone Marrow Transplant is the only option for cure for myelofibrosis apparently at this time. I even found a recent article in Cancers April 2025 stating in the first study of its kind that very high platelets was shown to be protective to overall survival in overt myelofibrosis! I also found there is something like a 20% misdiagnosis between ET and Myelofibrosis! So, for me it is best to stay positive, stay very active, eat healthy foods, have healthy habits, be thankful for all my blessings, and think about what is best for me.

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.