confused about options

[Pounds11]

I’m currently on 4 capsules of hydrea a week and my platelets are now at 583 which is ok with both my local hematologist and my MPN specialist at Stanford. I have no symptoms, am 77 and was diagnosed in January. They immediately wanted me to go on daily hydroxyurea but I refused. Things look good on all my bloods at this dosage. I listened to Dr Spivak yesterday (thank you Hunter and everyone else). I guess my question is if Pegasus has some therapeutic value why, besides cost, isn’t it discussed. I’m doing ok on hydrox but mentally it’s destroyed me. Thank you. I hope this makes sense.

[hunter5582]

There are a number of reasons why docs may not discuss all of your options with you. Frankly, I do not think the reasons are adequate to justify a failure to discuss all options.

Hydroxyurea and Pegasys are recognized as the two first-line treatment options for ET. Each has advantages and disadvantages. The decision needs to made by the patient based on the patient's treatment goals, risk tolerance, and preferences.

None of us have any way to know your entire profile. You may or may not have contraindications for the different medication used to treat ET. Absent any contraindications, then it is up to you to decide whether you want to continue on HU since you are doing OK so far or if you would prefer to opt for Pegasys (or one of the other meds).

Here are a couple of relevant articles of interest.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Regarding your question about how to ask about alternatives, it is actually simple. Put it on your agenda and insist on reviewing all of your options. Make clear that you have done your research on your options. Present as an educated and assertive patient. This is how you ensure that you are listened to and receive optimal care. I always go with a written agenda and give a copy to the doctor. Here is what the agenda format looks like.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment

Treatment

Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.

Here are a few links to facilitate doing a side-by-side comparison on HU and PEG.

HU

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

PEG

drugs.com/pro/pegasys.html

online.epocrates.com/drugs/...

Please know that either choice may work for you, however, if you find the HU treatment plan to be unsuitable, then you do have other options. it is your right to choose.

[Pounds11 in reply to hunter5582]

Thank you so much. I am printing out your guidelines so will have them at hand. I don’t know why I think I should get a pass in this world but I have a hard time poisoning myself. I have no other issues except age. I have been following your amazing advice. Have a great vacation!!!

[hunter5582 in reply to Pounds11]

If you would prefer an immune-modulating approach to cytoreduction to using a cytotoxin, then it is your prerogative to advocate for that. It would also be your prerogative to opt to not engage in cytoreduction at all, regardless of age. Your body - your choice. Just be sure to review all options to make a good decision about what is in your own best interests.

[mhos61]

Hi there Pounds11.

I’m so sorry to hear that you’ve been ‘mentally destroyed’ with regards to your present treatment, hydrea. That is such a shame, especially when it seems to be working for you.

What is it you fear? If it’s opinions, that’s all they are opinions, there is a lot of bias out there, and you have to remain cautious. I have found that some articles I have researched (from reputable sources) will be contradicted by other professional sources, it’s difficult for the patient to make informed decisions at times.

I agree that all options of treatment should be discussed, and the patients preference should always be considered despite cost.

I’m nearly 67, and have been on Hydrea for six years with no issues to date. Most patients tolerate this drug well. No other treatment options were offered to me at the time of my ET diagnosis in 2016. If it was now, I think I would ‘probably’ opt for Pegasys. However, I am doing really well on low dose hydrea, and for that reason I am reluctant to change despite the ‘potential’ to achieve a deeper or complete molecular response (CMR) with interferon.

I have been in CHR from the very early days of hydrea treatment. I take only five tablets a week Monday to Friday, platelets average a steady 340/60. It is important to note too that the interferons run some potential risks and side effects including the risk of developing autoimmune disease. Having said that, I would choose Pegasys over Anagralide should hydrea ever stop working for me. But at the moment I am of the belief ‘if it ain’t broken, don’t fix it’.

[Meatloaf9 in reply to mhos61]

"if it ain't broken, don't fix it" those are the exact words my mpn specialist said to me when I asked him if I should switch from HU to interferon for the treatment of my PV. I am 72 and have been on HU for 13 months. The HU is controlling my blood counts, all within reference so far. WBC, Platelets, and H & H all WNL. He keeps telling me that HU is a good drug and recommends that I stay on it. He is a well known mpn specialist at Cleveland Clinic. I am still considering giving a try to Pegasys or Besremi beginning in Jan when the new medicare year begins due to cost. I have no side effects from the HU but if it would lower the AB (the INF) it might be of some benefit.

[Pounds11 in reply to Meatloaf9]

Thank you. Great advice. It’s working for me too. This helps me calm down.

[mhos61 in reply to Meatloaf9]

I had a consultation this year with a highly regarded MPN Specialist in the UK who pretty much echoes your MPN Specialists thoughts on hydrea.

Good luck on your decision in January. You have plenty of time between now and then for researching this further. Have you thought of getting a second opinion just to give you a better balance to inform your choice?

The insurance thing is a huge hurdle for many in the USA. I don’t pretend to understand it 🤔.

Good luck anyway!

[Meatloaf9 in reply to mhos61]

Thanks. I do have a local hematologist, a young lady who seems very bright but has only been a practicing hematologist for 3 years. She has never placed a PV patient on interferon, she told me that her friends who are hematologists told her it is too hard to get it adjusted. I would have thought that a newly trained hematologist would have been up to date on current treatments. She told me she spent time working in a MPN clinic in Houston, Texas. Go figure. Best to you.

[EPguy in reply to Meatloaf9]

She has a point on the adjusting. For me HU was really easy, how many pills/week and get results quickly on side effects bloods etc. Besremi in particular is still new and as in recent posts, our doses and effects are all over the place. Further some effects and benefits of IFN take years. I'm 6+ months in and still don't know a right dose.

But it's possible your Dr's associates are influenced by the early non-PEG IFNs. These were very difficult to dose right since it was taken daily in many cases and was unstable in the body. Modern IFN does not have this problem.

I still favor the hassle for the Bes potential benefits. But I'm also still searching for the magic potion to feel ok. I did not feel well on HU, many here do better on it.

[Pounds11 in reply to mhos61]

This helps so much. I tend to get wrapped into the last thing I read which really dumped on hydroxyrea. Many thanks for your support. I have an anxious personality which I’m working on as stress doesn’t help either.

[mhos61 in reply to Pounds11]

Yes, I sensed your anxiety. I’m really glad to hear that the replies have calmed you somewhat.

The thing to remember is when a forum member is having difficulties with MPN symptoms, medication or general anxieties, the likelihood is pretty high that they will come on to the forum to discuss this and hopefully gain some support. So, if that happens to be for example some patients experiencing genuine issues with hydrea, that could paint a false picture, because in reality the positive stories are less likely to be heard.

Take Care xx

[Exeter21]

HU worked well on my platelets reduction however my side effects were very bad & massive weight loss due to food rejected by intolerance to drug. Hence I have to change to another possibly Peg . It also wiped out my HRT patches I have since hysterectomy & sweats & no sleep was the final decision to come off it. Haemotology were more than happy to listen . 👍

[Bridie123]

Why worry about change If you are only taking 4 a week. I take 21, now that does play with your mind! I do not have any safe for me, other options. Ofcourse I am not trying to minimise your stress, only to show it could be worse. Keep smiling 🤗

[Hidden]

Hello Pounds11 I'm 71 and have been on hydroxy for nearly 3 years. As time as gone on side effects have increased and become more intense. As l remember l was not offered other meds an hydroxy was seen as my best option for life l was told l could expect a life span of 15 years phew. I have on numerous occasions asked about alternatives but told hydroxy was best for me,l feel l have no choice . I will keep trying for an alternative and have an upcoming meeting with Consultant so will prepare for this and hopefully will not feel gaslighted by my hematologhy department. Best

👋 Adiewon

[Hopetohelp]

When I was called in to start treatment I was first offered hydroxy. I said no and that I wanted peg and without hesitation my Haematologist agreed. I think they are told to offer cheapest choice first and as long as they can justify to superiors that patient insisted on peg it clears their name of financial responsibility. That is my thought as resistance to me going on peg was nil. Unfortunately you have to be insistent once you have decided which drug you want to start. Having said that, talk about the mind playing tricks, I then thought that it was so easy to get the peg having expected a fight, that I started wondering if I had made the right choice. The mind is daft sometimes. After having agreed to start peg, I asked which treatment she would take if she was in my position and she said peg because she was of child bearing age. Clever answer I thought.

[Hopetohelp in reply to Hopetohelp]

Just saw you are up in the US. Might be different to here in the uk

[Jelbea]

Hi Pounds11 - I note your horror at taking Hydrea and I can understand it as that is how I felt originally - like I was swallowing poison on a daily basis. However, I have been taking it now since May 2021 when I was originally diagnosed with ET/PV. I take 500 mg. daily and it has done a good job at keeping my blood levels very good. Apart from extreme tiredness and perhaps occasional slight nausea I have no side effects. I have got used to taking them by telling myself that they keep my blood OK. I am 80 years old so the weariness may be coming from this - plus I suffer severe restless legs syndrome and only get four hours sleep in bits each night. I have neuropathy in my feet and now erythromelalgia but coping well. My MPN specialist feels HU is best for me as really no side effects to speak of. Best Wishes in whatever you decide.

[MaggieSylvie]

Hi Pounds11, I don't know whether this will help you but when I was diagnosed three years ago, I was told I couldn't have any treatment because I had MDS/MPN and you can't treat one without affecting the other (not strictly true), so I was put on the lowest daily dose of aspirin. Finally, my platelets have dropped to within range, but only recently, so I'm going to have to wait until my next blood test to see what they do. So I'm thinking, I could come off the aspirin as I may not need it anymore. I have no mutated genes, and I know it was a relatively long time for my platelets to be high, but perhaps there was a reason they were high and a reason now that they are not high Perhaps it was too much stress and pain in my life, and now, an acceptable level of stress and pain.

This leads to the thought that now I could have treatment for the messed up haemaglobin (I'm taking erythropoietin) if my age isn't a barrier. There's the rub! I can't tell from your post whether your platelets were proliferating or insufficient, but there might be some insight in what I've written and there might be hope for both of us.

😊

[Barbiebreath]

The only medication I’ve had is Besremi. I’ve had little to no problem adjusting. I think if you want to try an interferon then you have the right to give it a try. Can’t you always go back on the HU if it doesn’t work out?

Sending you support no matter what you decide.

[Pounds11 in reply to Barbiebreath]

Thank you and everyone else for the input. You all are in it and get the confusing information and isolation we sometimes feel. This forum really helps. I’m grateful.