INCA-033989 by Incyte for Myelofibrosis: Likelihood of Approval

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January 12, 2024

INCA-033989 is under clinical development by Incyte and currently in Phase I for Myelofibrosis. According to GlobalData, Phase I drugs for Myelofibrosis have an 86% phase transition success rate (PTSR) indication benchmark for progressing into Phase II. GlobalData’s report assesses how INCA-033989’s drug-specific PTSR and Likelihood of Approval (LoA) scores compare to the indication benchmarks.

GlobalData tracks drug-specific phase transition and likelihood of approval scores, in addition to indication benchmarks based off 18 years of historical drug development data. Attributes of the drug, company and its clinical trials play a fundamental role in drug-specific PTSR and likelihood of approval.

INCA-033989 overview

INCA-033989 is under development for the treatment of myelofibrosis (MF), essential thrombocythemia (ET). The drug candidate is a monoclonal antibody which acts by targeting calreticulin (CALR).

It was also under development for post-essential thrombocythemia myelofibrosis (Post-ET MF) and primary myelofibrosis (PMF).

Incyte overview

Incyte is a biopharmaceutical company, which discovers, develops and commercializes proprietary cancer therapeutics. The company’s lead product, Jakafi (ruxolitinib) is marketed in the US for the treatment of patients with high-risk myelofibrosis; and polycythemia vera who are intolerant to hydroxyurea. The company distributes Jakafi through a network of specialty pharmacy providers and wholesalers. In collaboration with Incyte, Novartis International Pharmaceutical Ltd (Novartis) develops and commercializes ruxolitinib outside the US for hematologic and cancer indications under the name Jakavi. The company’s pipeline portfolio encompasses drugs for the treatment of lung cancer, graft versus host disease, b-cell malignancies, solid tumors, non-small cell lung cancer, glioblastoma, liver cancer, and advanced malignancies. Incyte is headquartered in Wilmington, Delaware, the US.

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Transfusion Independence With Momelotinib Impacts OS in Myelofibrosis

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Targeted Oncology Staff

DISCUSSION QUESTION

  • How do the most recent data on Janus kinase (JAK) inhibitors support/change your approach to treating patients?​

DRAUPADI TALREJA, MD: I’m all for momelotinib [Ojjaara]. I was never for ruxolitinib [Jakafi] but there was nothing else available, so I used it.

HARIS ALI, MD: Would you use momelotinib in the majority of your patients or just on certain patients with moderate or severe anemia?

TALREJA: I will use it for them because it reduces the spleen anyway; all [JAK inhibitors] reduce the spleen beautifully. Because it does not cause anemia and can make them transfusion independent, if they have symptoms, a big spleen, and anemia, I have many reasons to use momelotinib. So I’m going to go there, and I’m going to [use less] ruxolitinib.

ALI: Maybe the once-daily dose might be helpful as well.

ARATI CHAND, MD: Was the SIMPLIFY-1 study [NCT01969838] powered for superiority or noninferiority?

ALI: It was powered for noninferiority for [spleen volume reduction] and symptoms, and superiority for the transfusion independence.1

CHAND: What about the adverse event [AE] profile?

ALI: Ruxolitinib has a bit more thrombocytopenia and anemia, and momelotinib has some more gastrointestinal [AEs] and nausea. Otherwise, they were quite comparable.1

CHAND: It looks less toxic compared with ruxolitinib. I would probably change and start using more momelotinib now that is available. Earlier, we didn’t have anything except ruxolitinib and fedratinib [Inrebic]. Pacritinib had such a restricted indication that you could only use it for those patients with very thrombocytopenic myelofibrosis. I think I would definitely start my new patients on momelotinib.

ALI: Would that be regardless of the hemoglobin and platelet count?

CHAND: I think so. It looks like it’s better tolerated. Patients are different, so there may be patients who don’t tolerate this. But in that case, it would make sense to switch and see if they tolerate ruxolitinib better. Efficacy is one thing, but tolerance is also important, especially for treatments that have to be given over prolonged periods of time.

GEORGE HAJJAR, MD: The dosing is also an issue. Adjusting the dose of ruxolitinib is very frequent, depending on the platelet count and hemoglobin level. It’d be interesting to know how many patients got the full dosing of ruxolitinib in that trial vs momelotinib.

ALI: The correct dosing is also important, but it usually goes by the package insert, like 20 mg [twice daily ruxolitinib] for patients with greater than 200 × 109/L platelets, or [15 mg twice daily for patients with between 100 × 109/L and 200 × 109/L platelets].2

HAJJAR: Dose adjustments are always frequent. If we see platelet count drop, we have to tell the patient to decrease the dose, which will be a pain.

ALI: [In the COMFORT-I trial (NCT00952289)], although anemia was a big factor, discontinuation of ruxolitinib because of anemia was in less than 1% of the patients.3 Regardless, patients felt better with the improvement in the symptoms and the spleen symptoms. For whatever reason, that was not the one of the common reasons for discontinuation. I think one of the most common was thrombocytopenia; it wasn’t anemia.

One thing with momelotinib is that it has a lot of drug interactions with OATP1B1/B3 inhibitors, including with statins and different drugs.4 It’s something to watch out for, because hepatic dysfunction was another reason for the hold and [we need to] look at it further. Drug interactions may be the one thing to look out for in a patient, as most of the patients over 65 will be on 5 or 6 different medication for different comorbidities.

CHAND: Was that interaction only for 1 statin or for all statins? Because [many patients] are on a statin now.

ALI: That’s right, so dose reduction might be needed for the statins. There’s a whole drug list with OATP1B1/B3 inhibitors, so you just have to watch for that, but it has more than 1 statin listed there.

DISCUSSION QUESTION

  • How do the overall survival (OS) data influence your choice of therapy?​

ALI: We looked into an OS advantage with ruxolitinib.5 We don’t have too much survival data with [momelotinib] but we do have with the transfusion independence vs non-independence.6 How does that affect your therapy?

TALREJA: I think OS [could be] better with momelotinib. With ruxolitinib, the only good thing is they feel good. It’s their quality of life that helps them live longer. I don’t think ruxolitinib does anything to the bone marrow to reduce the myelofibrosis, so I think momelotinib is a much better drug.

ALI: Would everyone say the same thing about momelotinib for OS compared with other JAK inhibitors including ruxolitinib?

CHAND: I don’t know if you can say that momelotinib has superior OS [based on the trials], but it is basically dependent on transfusion burden. Regardless of what medication you are on, if you’re transfusion dependent, your survival is poor, and if you’re transfusion independent, you’re going to do better in the long run.

ALI: You’re right. Anemia is a big [factor]; if we’ll look at the HR…among all the other risk factors like age or low platelet count, anemia is the biggest factor and transfusion dependence [is based on] patients who are more anemic, so there is definitely poorer survival in those patients.

SWARNA CHANDURI, MD: Is this because this drug works on the hepcidin as an inhibitor? Is that the reason why this is better tolerated and [leads to] less dependence on the transfusions?

ALI: Yes, [inhibiting] the hepcidin pathway, and further reduction to ACVR1 leads to [transfusion independence].7

CHANDURI: If this drug has the additional quality of [ruxolitinib] and improving it, then it is a better drug than ruxolitinib. But the main thing is that is why patients with anemia do better.

References:

1. Mesa RA, Kiladjian JJ, Catalano JV, et al. SIMPLIFY-1: A Phase III randomized trial of momelotinib versus ruxolitinib in Janus kinase inhibitor-naïve patients with myelofibrosis. J Clin Oncol. 2017;35(34):3844-3850. doi:10.1200/JCO.2017.73.4418

2. Jakafi. Prescribing information. Incyte; 2021. Accessed December 18, 2023. https://tinyurl.com/3t6dd8jj

3. Verstovsek S, Mesa RA, Gotlib J, et al. A double-blind, placebo-controlled trial of ruxolitinib for myelofibrosis. N Engl J Med. 2012;366(9):799-807. doi:10.1056/NEJMoa1110557

4. Ojjaara. Prescribing information. GlaxoSmithKline; 2023. Accessed December 18, 2023. https://tinyurl.com/4wc5dmet

5. Verstovsek S, Gotlib J, Mesa RA, et al. Long-term survival in patients treated with ruxolitinib for myelofibrosis: COMFORT-I and -II pooled analyses. J Hematol Oncol. 2017;10(1):156. doi:10.1186/s13045-017-0527-7

6. Mesa R, Harrison C, Oh ST, et al. Overall survival in the SIMPLIFY-1 and SIMPLIFY-2 phase 3 trials of momelotinib in patients with myelofibrosis. Leukemia. 2022;36(9):2261-2268. doi:10.1038/s41375-022-01637-7

7. Oh ST, Talpaz M, Gerds AT, et al. ACVR1/JAK1/JAK2 inhibitor momelotinib reverses transfusion dependency and suppresses hepcidin in myelofibrosis phase 2 trial. Blood Adv. 2020;4(18):4282-4291. doi:10.1182/bloodadvances.2020002662

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Tamoxifen Reduces Allele Burden of Patients With Myeloproliferative Neoplasms

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Vicki Moore, PhD

In a clinical trial evaluating the use of tamoxifen in patients with stable myeloproliferative neoplasms (MPNs), 3 patients showed a 50% or greater reduction in mutant allele burden at 24 weeks. This and other results from the study appeared to support further investigation of this agent in this population, but with consideration of possible thrombotic risk. Study results were reported in the journal Nature Communications.

The study’s primary endpoint was a ≥50% reduction in the mutant allele burden in peripheral blood at 24 weeks, with trial success involving at least 3 patients having met this outcome. Several secondary and exploratory outcomes were also evaluated.

These results warrant further investigation of tamoxifen as potential therapeutic for MPN in larger studies, after careful consideration of the risk of thrombosis.

There were 38 patients recruited into the study, with 32 patients completing 24 weeks of treatment. In the total population of 38 patients, 36.8% had essential thrombocythemia, 28.9% had polycythemia vera, 15.8% had primary myelofibrosis, 13.2% had post-polycythemia vera myelofibrosis, and 5.3% had post-essential thrombocythemia myelofibrosis. The overall population had a mean age of 66.3 years (range, 50.0-87.0 years).

There were 3 patients who reached the primary outcome of a ≥50% reduction in mutant allele burden at 24 weeks. Therefore, this study was considered a success in terms of its primary outcome. An additional 5 patients met a secondary outcome of achieving a ≥25% reduction in mutant allele burden, of whom 3 patients had JAK2V617F mutations.

The study investigators additionally performed analyses using hematopoietic stem/progenitor cells that revealed distinctive molecular signatures in responders and nonresponders at baseline. In responders, increased expression of genes associated with JAK-STAT signaling and oxidative phosphorylation appeared to become downregulated in the presence of tamoxifen.

References: Fang Z, Corbizi Fattori G, McKerrell T, et al. Tamoxifen for the treatment of myeloproliferative neoplasms: a phase II clinical trial and exploratory analysis. Nat Commun. 2023;14(1):7725. doi:10.1038/s41467-023-43175-5

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Stumbling Through PV

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“Even if you stumble, you are still moving forward.” This is my go-to quote when life’s difficulties arise. Hearing the words, you’ve got cancer
multiple times will make you feel like you are stumbling through life. The question is how do you stop the feeling of stumbling through a
cancer diagnosis?

In November 2017, I came back from a 200-mile bike ride and felt a little more fatigued and weak than usual. My platelets were in the high 700 range. Docs initially thought this was from inflammation from my bike ride. After a number of blood tests and a bone marrow biopsy, I was initially diagnosed with Essential Thrombocytosis. My diagnosis changed two years ago to Polycythemia Vera. In retrospect, I truly believe I was having symptoms long before my diagnosis. Learning how to manage your symptoms takes a lot of trial and error and patience. Being open to making a little change in your daily routine here and there to manage some of your symptoms is really helpful. When you try something different, write down the change and try that change for a week or so. If the change works for you, move forward. If not, try to find another little tweak of change to help you with your symptoms.

Some of my most challenging symptoms initially were itchy skin, fatigue, and gut issues. Some tweaks to my daily routine such as increased hydration, tweaking of my diet, taking lukewarm & quick showers, and being active most days, have really helped me. Additionally, my current medications and an occasional phlebotomy have really helped manage most of my symptoms. On a day when your symptoms are challenging, just give yourself some grace and relax. Remember as we age, not every little symptom we experience is related to our MPNs.
Finally, a cancer journey is never easy and can feel like you are stumbling through life. When you stumble, you have to learn how to get back up and move on which can be challenging. For me, my attitude about my PV diagnosis now is, that this is just a little stumble on life’s road. That helps me move forward and focus on living every day in this journey called life.

JBI-802 initial Phase I data suggests therapeutic potential in sensitizing immunotherapy resistant tumors and in Myeloproliferative Neoplasms with thrombocytosis

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BEDMINSTER, N.J., Jan. 8, 2024 /PRNewswire/ — Jubilant Therapeutics Inc., a clinical-stage biotechnology company pioneering the development of a first-in-class CoREST (Co-repressor of Repressor Element-1 Silencing Transcription) inhibitor JBI-802 with the dual activity on LSD1 and HDAC6, today announced preliminary safety, pharmacokinetic and initial efficacy results of the Phase I trial in advanced cancer patients. Furthermore, the study results provide a human proof of principle for expanding the development of JBI-802 in Essential Thrombocythemia (ET) and related Myeloproliferative Neoplasms (MPN/MDS) with thrombocytosis.

The data from first 11 patients with advanced cancer revealed a dose-proportional increase in exposure across cohorts and a strong correlation between the exposure and the on-target effects of platelet decrease, indicating that pharmacological relevant level of LSD1 inhibition have been achieved. At the same time, platelet decrease is the only adverse event above grade 1 observed in these patients, which differentiates JBI-802 from LSD1-only inhibitors. Specifically, no AEs (Adverse Events) of anemia has been observed, which is potentially due to the positive benefit of inhibition of HDAC6 in erythrocytes. Also, there are no reports of Dysgeusia, an adverse event that has been observed with LSD1-only inhibitors.

Among the 11 patients, two were NSCLC (Non-small Cell Lung Cancer) patients, both had progressed on doublet immunotherapy, nivolumab+ipilimumab as first line treatment and both showed anti-tumor activity. Both the patients were treated at lower dose level (10mg) where no relevant decrease of platelets is seen, suggesting that in patients with sensitive tumors this dose can be pharmacologically active with a desirable safety profile.

Both NSCLC patients had failed first line treatment with doublet immunotherapy, nivoluman/ipilumab prior to enrolling in the JBI-802 study. The first patient had a STK11 mutation, known to decrease the effectiveness of immunotherapy, present in around 10% of NSCLC patients (higher frequency in lung adenocarcinoma). JBI-802 showed a confirmed partial response in this IO-refractory NSCLC patient with a 39% decrease in the target lung tumor mass. The tumor shrinkage outcome was accompanied by a complete resolution of pancoast syndrome (lung lesion affecting the nerves of brachial plexus). The response appears to be durable after nine cycles and the patient remains on JBI-802 therapy.

The second patient had both lung lesion and liver metastasis, which are known to confer resistance to immunotherapy and lead to poor prognosis. Treatment with JBI-802 resulted in over 50% shrinkage of the patient’s liver metastasis and a complete resolution of related portal hypertension, edema and improvement of quality of life.

Dr. Alexander Starodub, The Christ Hospital – Cincinnati, treating physician for the above patients commented, “The anti-tumor activity seen in these two NSCLC patients is remarkable given the poor prognosis based on their genetic and metastatic pattern. The 10 mg dose of JBI-802 was well-tolerated without any clinically significant adverse effects and the initial clinical data suggest a good therapeutic index for JBI-802.”

Preclinical studies showed a synergistic anti-tumor effect by combining immunotherapy and JBI-802 in xenograft models. In addition, the CoREST inhibition was reported to sensitize immunotherapy resistant tumors, especially those with STK11 mutations. Taken together, the preliminary efficacy data from the JBI-802 Phase I study suggest the opportunity that a combination between immunotherapy and JBI-802 could bring a new therapy option to such patient populations with limited treatment options.

In addition, the on-target dose/exposure-proportional decrease in platelet constitute a proof-of-principle that JBI-802 can be an active compound in hematological malignancies like Essential Thrombocythemia (ET) and other MPN/ MDS characterized by thrombocytosis. A follow up Phase I/II study in MPN/ET and MPN/MDS with thrombocytosis is being planned in the first quarter of this year to investigate JBI-802 as potential novel treatment option.

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SRSF2 Mutation in JAK2V617F-Associated MPNs Reduces Polycythemia, Impairs Hematopoietic Progenitor Activity

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Ryner Lai

SFSR2 mutation reduces polycythemia and impairs the activity of hematopoietic stem/progenitor cells in JAK2V617F-associated myeloproliferative neoplasms (MPNs), according to a study published in Blood Cancer Journal. 

Prior research has shown that JAK2V617F is one of the most common somatic mutations associated with MPNs; in turn, SFSR2 mutations are commonly associated with JAK2V617F, especially in myelofibrosis. Nevertheless, the consequences of SRSF2 mutation in JAK2V617F-associated MPNs have yet to be clearly elucidated in existing medical literature.

Researchers conducted a study on Cre-induced SRSF2P95H/+JAK2V617F/+ knock-in mice. The research team induced Mx1Cre expression by injecting mice models with 3 doses of polyinosine-polycytosine (pl-pC) at a dose of 300 μg at 4 weeks after birth. This allowed the researchers to identify the impact of SRSF2 mutation on blood parameters and the bone marrow 24 weeks after pl-pC administration (or 28 weeks after birth).

Additional mutations or genetic abnormalities are required in association with SRSF2P95H and JAK2V617F mutations in the development of full-blown myelofibrosis.

The research team discovered that concurrent SRSF2P95H and JAK2V617F mutations resulted in a reduction in the polycythemia phenotype; mice with concurrent mutations demonstrated a significant reduction in erythrocytes, leukocytes, platelets, neutrophils, and hematocrit parameters compared to mice that only had the JAK2V617F mutation. In addition, mice with concurrent SRSF2P95H and JAK2V617F mutations had higher mean corpuscular volume (MCV) volumes compared to JAK2V617F/+ mice.

Although Jak2V617F/+ mice demonstrated significant splenomegaly, the investigators found that SRSF2P95H/+JAK2V617F/+ mice exhibited reduced spleen size. In addition, whereas JAK2V617F/+ mice exhibited bone marrow hypercellularity alongside significant increases in erythroid precursors and megakaryocyte clusters, SRSF2P95H/+JAK2V617F/+ mice exhibited normal bone marrow cellularity.

The research team found absent/mild bone marrow fibrosis at 24 weeks in both mice groups. They also reported that SRSF2P95H mutation reduced the competitiveness of hematopoietic stem/progenitor cells; in addition, mice with this mutation had reduced transforming growth factor (TGF)-β levels and increased expressions of S100A8 and S100A9 compared to mice without this mutation; overexpression of S100A8 and S100A9 in turn led to erythroid differentiation defects and myelodysplastic syndrome pathogenesis.

“In conclusion, we demonstrate that SRSF2P95H mutant reduces development of bone marrow fibrosis in JAK2V617F-induced MPNs,” the authors of the study wrote in their report. “Additional mutations or genetic abnormalities are required in association with SRSF2P95H and JAK2V617F mutations in the development of full-blown myelofibrosis.”

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Merck Announces Phase 3 Trial Initiations for Four Investigational Candidates From its Promising Hematology and Oncology Pipeline

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January 5, 2024 6:45 am ET

Global Phase 3 studies started for bomedemstat (LSD1 inhibitor), nemtabrutinib (BTK inhibitor), MK-2870 (anti-TROP2 ADC) and MK-5684 (CYP11A1 inhibitor)

Comprehensive clinical development programs being initiated for each investigational candidate

Demonstrates company’s commitment to research across novel mechanisms of action in hematologic neoplasms/malignancies, as well as lung, endometrial and prostate cancers

RAHWAY, N.J.–(BUSINESS WIRE)– Merck (NYSE: MRK), known as MSD outside of the United States and Canada, today announced the initiation of pivotal Phase 3 trials for four of its investigational candidates from its diverse pipeline in hematologic malignancies and solid tumors. Global Phase 3 studies have been initiated and are actively enrolling for the following investigational candidates:

  • Bomedemstat, an investigational orally available lysine-specific demethylase 1 (LSD1) inhibitor, being evaluated for the treatment of certain patients with essential thrombocythemia (ET);
  • Nemtabrutinib, an investigational oral, reversible, non-covalent Bruton’s tyrosine kinase (BTK) inhibitor, being evaluated for the treatment of certain patients with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL);
  • MK-2870, an investigational trophoblast cell-surface antigen 2 (TROP2)-directed antibody drug conjugate (ADC) being developed in collaboration with Kelun-Biotech, which is being evaluated for certain patients with non-small cell lung cancer (NSCLC) and certain patients with previously treated endometrial carcinoma;
  • and MK-5684, an investigational CYP11A1 inhibitor being developed in collaboration with Orion, which is being evaluated for the treatment of certain patients with metastatic castration-resistant prostate cancer (mCRPC).

“These Phase 3 trial initiations for four of our investigational candidates represent a critical step forward in our efforts to advance potential treatment options for people with solid tumors and hematologic neoplasms and malignancies,” said Dr. Marjorie Green, senior vice president and head of oncology, global clinical development, Merck Research Laboratories. “We have a proud legacy of turning breakthrough science into medicines that save and improve lives around the world, and we are dedicated to continuing research to expand our broad portfolio of oncology therapeutics to continue to address unmet needs in cancer care.”

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Patients With MPNs Face a Heighted Risk for Thrombotic, Cardiovascular Events

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Alex Biese
Patients with myeloproliferative neoplasms (MPNs) — a group of blood cancers that causes the bone marrow to overproduce red or white blood cells or platelets (including polycythemia vera, essential thrombocythemia and myelofibrosis) — face a height risk for thrombotic and cardiovascular events.

But Kim Noonan, DNP, ANP-BC, AOCN, FAAN, Nursing and Patient Care Services Chief Nurse Practitioner at the Dana-Farber Cancer Institute in Boston, said there are things nurses can do to help manage that risk, such as inquiring about patients’ history of blood clots and encouraging patients to not be sedentary, as well as watching for symptoms such as elevated heart rate and shortness of breath.

“I am always thinking about thrombosis first, and then I can relax if I have maybe another explanation for their shortness of breath,” Noonan said. “But we’re always working it up, we really do due diligence to not miss some kind of thrombotic event that’s going on.”

Noonan spoke with Oncology Nursing News about awareness of the potential for thrombotic and cardiovascular events, risk factors to be mindful of and everyday actions patients can take to lower their risk.

Transcript:

Noonan: NCCN, the National Comprehensive Cancer Network, really has done a lot of work in identifying this for multiple myeloma patients, and they actually have come up with guidelines as to who really needs to be on anticoagulant therapy and who does not, and they’ve identified factors that we need to consider. And so, I think it’s getting a lot of press, it’s getting a lot of attention, certainly in the myeloma world. But I think it deserves a little bit more attention, I hate to say it, but maybe in solid tumor worlds as well.

One of the things that I didn’t mention was that, I think I said people that are dehydrated are at risk, but also people that have been on like airplane rides, people that have been in long car rides, too, are really at risk. So those are other risk factors that I think I failed to mention.

Oncology Nursing News: Would working a sedentary job, such as a desk job, also potentially be a risk factor as well?

Noonan: That’s a huge risk factor, as well, to the point of, we say to people, if you’re not getting up and walking around, maybe we should consider putting you on anticoagulation therapy right up front as opposed to just using an aspirin.

Oncology Nursing News: What are some simple things, such as getting up and walking around, that folks can do in their everyday lives to lower their risk?

Noonan: Yeah, that’s a really good question. We really want people to stay hydrated. We want them to get up and walk around. We want them to be aware of what the symptoms are, they can be doing everything right and still develop a clot because of the medication that they’re on.

But I think also, education is essential, that you are on a medication that can increase your chances of developing a clot or thrombosis, and just be aware of what the symptoms are.

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A Patients Speaks Out About Her Experience With MPN Symptoms

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Darlene Dobkowski, MA

Fatigue, pain, and itchiness are often some of the most troublesome symptoms patients with a myeloproliferative neoplasm (MPN) faces, according to Jessica Kuhns.

Kuhns, a 42-year-old woman with an MPN, spoke with Oncology Nursing News about receiving her diagnosis in 2016 and how nurses have helped her manage her symptoms. Despite a high turnover rate of nurses, she appreciates their collective efforts.

Oncology Nursing News: Tell me about yourself.

Kuhns: My name is Jessica Kuhns. I’m 42 years old. My biggest accomplishment is my son Jaden. We’re kind of a tag team. Everything I do, he’s right there with me. Whatever he does, I do with him. In 2016, I was diagnosed with MPN. I’ve been fighting it ever since and doing the best I can day by day.

Can you tell us about when you were diagnosed?

It all started with a magnetic resonance imaging [MRI] test on my knee, believe it or not. TIn the MRI, they saw that my spleen was severely enlarged. They wanted me to go to a hematologist. I started seeing a doctor in Pennsylvania, where I live. I had just had a hysterectomy. I had just beaten uterine cancer in 2015. And she had assured me the doctor that, after the hysterectomy and a splenectomy that my iron levels — because I had very low iron as well —would go back to normal. It would be a better thing for me to have my spleen removed. So I said OK.

I went and I had the procedure. They actually screwed it up really bad and I darn near died. They started out laparoscopically, but they cut out a major artery and I started bleeding out. Then I developed a massive, massive blood clot that consumed 3 major return veins from my intestines. The doctors had told my husband, at that time, and my son to start making my final arrangements, and that they didn’t see me walking out of the hospital.

I was then introduced to my now-doctor, and he came in like a wrecking ball. He was like, I’m your doctor, and I think I have an idea of what’s going on. As long as you’re willing to fight, I’m going to fight with you. And we have. He got me out of the hospital. My platelets were at 1.9 million. He got them under control, and back down to a “normal range.” I was able to leave the hospital and I’ve been great since.

You mentioned some side effects that you encountered since you were diagnosed. Were there any other ones outside of the surgical procedure that you’ve experienced?

Yeah, there are definitely side effects from this disease. The 3 top complaints, which are my 3 top complaints, are fatigue, pain, and itchiness. Those are the three that I most complain of. Mine are definitely pain, fatigue, and I do get itchy, but I don’t know if it’s because of the changing of the seasons or if it’s from the MPN. I hate to blame everything on MPN.

How have nurses helped you address those side effects and to potentially manage them?

They have absolutely directed me in the right way, as far as finding resources, and what will help and what makes it worse. They’ve done a great job in guiding me to find the information that I needed.

Is there a certain moment that stands out to you when a nurse has helped you?

Not one that stands out too much. I mean, unfortunately, such a high turn rate of nurses, it’s really sad. So I can’t say that I’ve had one specific nurse or one specific instance that I was like, Oh, wow, this is amazing. But I have had moments where my nurses did amazing things for me.

Was there ever advice that a nurse may have given you that really helped you?

They just always encouraged me to stay as positive as I can. I know it sounds corny, but the more positive you stay, the better chances you have of fighting this. They encourage you to keep going because there are times where like, oh, this is just so frustrating. And they’re just right there pushing you along, like you got this.

What advice would you give to both patients and nurses?

I think the nurses are doing great listening to us, I don’t think that’s the problem. Unfortunately, like I said, with such a high turn rate, you don’t see the same nurse repeatedly. Every nurse that I’ve ever come across is really in it for the patients. They are so knowledgeable, they’re so there.

And as far as the patients, have that communication with your nurses, talk to them. You may not see them on your next appointment, but they’ll give you whatever information that you need.

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Community Helped a Patient When Their MPN Treatment Was Delayed

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Brielle Benyon

Thomas Silver discusses how a community of support helped a patient when his bone marrow transplant was delayed.

Undergoing treatment for a myeloproliferative neoplasm (MPN) can be extremely lonely, so it is beneficial to have a support system throughout the process, explained Thomas Silver, board president of the Cancer Research and Treatment Fund in New York.

Silver, who was also recognized at CURE®’s 11th annual MPN Heroes® recognition event, told the story of his friend, Nick, an MPN survivor who was preparing to undergo a bone marrow transplant — which is currently the only curative therapy for MPNs — before he caught a common cold and had to have the procedure pushed back.

“Well, a month in his life is a long time,” Silver said.

However, Nick, Silver and a group of others are a part of a community that was able to offer support and stay in touch with Nick, who eventually went on to receive the transplant and is doing well, according to Silver.

Transcript

Well, it can be fairly lonely. It’s a really long, hard task. I remember talking to Nick when he was going through his through his trials and his journey. One of the things that happened was he was all ready to go with his transplant. And just a week or two beforehand, he developed a common cold and imagine being ready to go. And then you develop a cold. And they say, “Well, now because you have cold, you’ve got to wait another month.”

Well, a month in his life is a long time. So, the fact that we were around, we were available to talk to him, Nick and I are part of a large fraternity house and we have a number of brothers that we continue to stay in touch with. You have a great time with all the time. Just help him keep his spirits up when he was waiting that extra month to be able to actually begin the process of getting better.

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