What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease per labs. Getting injections in the eye for macular degeneration. From my reading, he would be considered moderate category for ET. The Hematologist is looking into our insurance coverage for Besremi or Pegasys. He tried the HU a second time after problems last week just to make sure it was really from the meds. He is running slight temp (99-100), "RIGORS" -chills with chattering teeth and then sweats, unsteady on feet, very fatigued and is in bed. He is usually very active for his age and this is very unlike him.
He is very concerned about trying the interferon shots or other medicines because of the potential side effects. One of the shots had problems with retina issues like retinal detachment which happened to his mother.
Has anyone just said, "Hey, I'm 85. How about I just do the baby aspirin since my risk is moderate".
Looking for what other 80+ers have done and what was their experience.
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It can be good in a way to be sure what doesn't work to help guide treatments, clearly HU doesn't.
I'm a while till 85. But the retinal troubles and family history are of interest with INF (interferon) such as Besremi, so his concern is understandable. It is a known, if rare risk factor with it. I'm having eye issues since starting Bes, so far not retinal. If he does start INF he'll want very regular eye checks; probably he's already getting that.
Is the lowered PLT (555) from the HU? Is it stable without HU? Some Drs are ok with PLT up to 600 if other things are ok. But his age may have special considerations. Does he feel ok in general? If so and it's only the PLT level your idea to stay with aspirin is worth discussing with Dr.
Here is the label info on Bes for eye risks:
<<Ophthalmologic Toxicity:
Ophthalmologic toxicity has occurred in patients receiving interferon alfa products, including BESREMi. These toxicities may include severe eye disorders such as retinopathy, retinal hemorrhage, retinal exudates, retinal detachment and retinal artery or vein occlusion which may result in blindness. During BESREMi therapy, 23% of patients were identified with an eye disorder. Eyes disorders ≥5% included cataract (6%) and dry eye (5%). Advise patients to have eye examinations before and during BESREMi therapy, specifically in those patients with a retinopathy-associated disease such as diabetes mellitus or hypertension. Evaluate eye symptoms promptly. Discontinue BESREMi in patients who develop new or worsening eye disorders.>>
Thanks for your reply. His Platelets were about 950 before starting HU. PLT's Had increased over the past year but no meds. 5/21- PLT's were567. GP told us to repeat the CBC in 3 months but we were confused and missed it. Sent to Heme june 2022 dx of CALR ET and started on HU. He had no symptoms other than the increased PLT's. Rest of his CBC was normal. after about 6-7 weeks on HU, his PLT's dropped to 523, (7/11/22). then on 7/19/22 he suddenly developed symptoms as described above. He stopped HU on 6/21/22 & was off the HU for 3 days, symptoms improved except for weakness and fatigue. PLT's increased to 555 on 7/25/22. So we don't really know yet if his PLT's are stable or not.
He has been very healthy and active before his DX. He had no symptoms from the HU (500mg/day) until last week. He definitely was starting to get back to normal after stopping HU. I think we will discuss just aspirin for a while and monitor his blood.
If his PLT starts to get worrisome, HU can be taken in lower doses, 500 per 2 or 3 days, for example. It's also available in as low as 200mg pills. It may be none is still better than less, but as Hunter says, our options are not always black and white.
One of the bomedemstat trials Hunter noted is here if it could be of interest and he qualifies. This drug has been very effective so far for PLT control.
"An Enzyme Inhibitor, Bomedemstat, for the Treatment of Essential Thrombocythemia or Polycythemia Vera That Has Failed at Least One Standard Therapy"
I have also experienced HU-intolerance, which is not uncommon. Your husband certainly does have other options if he wants to pursue cytoreduction. You are correct to think that Pegasys is the other first-line treatment option for ET. Besremi is in clinical trials for ET, but is not yet approved for this purpose. Jakafi and anagrelide are the second-line treatment options for ET. There is also a clinical trial for a new drug, bomedemstat, for ET.
The answer to the question about just relying on aspirin-only is YES. People over the age of 60/65 do choose to ignore the standard age-based protocol and opt not to engage in cytoreductive therapy. This is a matter of individual choice. We each have to do a risk/benefit analysis of each of our choices. It is not a black and white decision. The choice needs to be made based on our treatment goals, risk tolerance, and treatment preferences.
The decisions I make about treatment are always based on two basic treatment goals. The most important treatment goal it to maintain my quality of life based on what I consider important. The secondary goal is to extend length of life but only when quality of life is preserved.
It is up to each of us to decide what our treatment priorities are. We must let our providers know what our treatment priorities are so that we can get valid advice and make good decisions. Many doctors will prioritize length of life over its quality unless instructed otherwise. This is not a decision any doctor can make. Only the patient can make this decision.
My situation is a bit different with a relatively indolent PV and age 67. HU did not work well for me either. I have opted for Pegasys then Besremi when it became available. It has been much more effective and easier to tolerate than HU. I feel better on Besremi and my quality of life is improved. The fact that Besremi will likely decrease my risk of progression and extend my lifespan is a good thing given that my QOL is better.
Please let your husband know that his question about what to do is quite reasonable. Focussing on quality of life is his prerogative. It is possible to find an intervention that improves the quality of life and its length. I hope and pray that this is what he will be able to do.
Thank you Hunter,My husband and I will be discussing what you talked about and then we will talk to his Doc. I appreciated your insight to a difficult problem.
Hello, I’m 86 and was diagnosed ET JAK2+ 4 years ago and immediately put on HU and aspirin. I didn’t feel great with it but not nearly as severe side effects as your husband. I had six months off it later that year as got breast cancer too and radiotherapy didn’t go with HU. I tolerated it when going back on it but had breathlessness and fatigue so asked to stop it and see what platelets did. Unfortunately they gradually went up to 800 odd so was put back on and I’m still taking dose of 500 mg daily. I’m sure I would feel much better if I didn’t take them and often think I’ll ask to stop them but worried about stroke or heart problems I had a suspected gastric bleed just at beginning of lockdown in March 2020 and was supposed to have endoscopy,….I’m still waiting! They took me off aspirin completely when this happened which caused a small clot in my little toe with excruciating pain which was caused by coming off aspirin. Put on Clopidogerel which I now take daily. So that’s my experience. I keep thinking I’ll ask to stop HU as platelets stable around mid 300’s. Unfortunately, only we can decide but at our age it’s definitely a question of quality of life. I do hope you and your husband can get some guidance in order to make the right decision. Best wishes, Fran
Thanks so much for your response. You are right that my husband had a bad reaction. ANd he tried it a second time just to make sure it was the HU. He was flat on his back, could barely make it across the room. Fever, shakes, chills, extreme fatigue. No question that he cannot tolerate it. I think we are going to just go with the aspirin for a few weeks and see what happens to his Platelets. We will go to interferon if they really jump but concerned about side effects.We appreciate your input.
Firstly, is your husband under the care of an MPN Specialist? I think in his case it is essential, as its quite possible that he may not need any cytoreductive therapy. Not sure how the borderline kidney disease would impact this decision.
Clearly your husband hasn’t tolerated hydrea, but equally, I totally understand his concerns with regards to interferon therapy. There is also anagralide to consider, which may suit him, as it works on platelet reduction only, and all his other counts are normal.
Significantly, there are two positives in your husband’s ET presentation, he is CalR+ and has no history of thrombotic events. According to the risk stratification, despite his age this would place him in the ‘Intermediate Group’, see attached link below.
Thank you for that link. I had seen somewhere that he was in the moderate risk category but did not copy the info. I am printing it off now. His Hematologist is not an MPN but he trained on MPN's under an MPN at Moffit cancer center. He is in close contact with that MPN, and said we can get a second opinion with Moffit if we desire. Because of his MPN training, he gets a lot of referrals for MPN patients. He is familiar with everything I've read on line and has been able to answer all our questions. We will be talking to him this week and will be asking if we can hold the cytoreductive therapy for at least a few weeks and follow his labs.Thanks again for your response.
I have carefully reread the article you sent and it seems to be recommending that cytoreduction is not necessary for intermediate risk ET. "Accordingly, we do not believe that it is mandatory to use cytoreductive therapy in such patients." and the chart shows alternate treatment to HU and aspirin is twice daily aspirin. This sounds just like what my husband (and I) would like to do.
My question is, do you know of any more similar articles that are more recent than this article in 2018? I am going to do a little more searching today.
There is an updated article (2021) below which suggests cytoreductive treatment is not mandatory for ‘intermediate risk ET’ if presenting without any CV history.
Also, note Table 6 ‘Intermediate Risk’ which says cytoreductive therapy is advised - but is optional.
The one thing I would say is your husband’s platelet count should be monitored closely, as CalR mutation patients tend to have a higher platelet count. This in itself is a potential risk for bleeds. If that became the case, two aspirin a day may indeed be counterproductive. So, it’s important that you discuss this at length with your haematologist.
I am printing off your article so I can read it carefully and make notes.
The Heme's NP called me back and said ok to baby aspirin only until we see the Doc. I requested a f/u appointment with the Hematologist to discuss plan of care and approaches, answer our questions, etc.
He gets repeat blood work next monday so we can see how his Plt's are responding. I hope we can do it with cytoreduction therapy. fingers crossed.
Thanks for your links. very helpful. My eyes are starting to cross reading all these technical papers!
I’m 85 and was diagnosed with ET at age 50. Have been on HU since diagnosis so not relevant to your situation. But I was just told that I have stage 3 kidney disease - but not to be concerned because it is very common at this age. Thought this might be a relief/good news for you. My best to you. Take care.
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