Should we shield again if we are given another letter? What’s the current advice from MPN experts now we are seven months into the pandemic?

[SDJD]

With UK Covid numbers rocketing once again, there has been murmurings in the news re shielding again.

Maz, now we are seven months into Covid 19, please could you ask the MPN experts what their current thoughts are re shielding. My haematologist and GP are not MPN experts. If shielding advice is given, I will get another letter from them. My issue is that I work in a school and stick to our small Year 2 bubble. I don’t want to let my team down if asked to shield again but on the other hand, I will want to follow the shielding advice, if we are more at risk of developing complications and also I don’t want to burden the NHS. I have ET which is well controlled with Hydroxycarbamide and Aspirin and I am nearly 62 years old.

Thanks, Suzy

[Kimmy53]

Hi yes I would be interested about do we have to shield again as I work in a hospital and doctor want to put me on hydroxycarbamide next time I see her (November)

[hunter5582 in reply to Kimmy53]

Given the current situation, I would opt for PEGlyated Interferon over hydroxycarbamide for anyone naïve to chemotherapy. I know this may not be the standard practice at this point, but I would not want to start anything that could reduce immune response. HU might not compromise your immune system, but there is no way to know for sure. If you are still symptom-free, it might be best to just continue without cytoreduction (unless you really are at elevated risk). It is all a balancing act. In the end, you just have to make the best judgement you can.

[Dovme in reply to hunter5582]

Hi Hunter

The advice you are giving is actually contrary to what we were told by all the experts in the MPN Voice webinars on Covid and also the opposite of what l was advised by my MPN specialist. I am seeing my specialist later this week so will check for updates What concerns me is that this virus will probably be around a long time and l would not want people to feel frightened to start treatments if it’s HU or to feel anxious to continue treatment if that’s what is recommended or works for them. I think it better to suggest to people that they discuss Covid concerns with haemotologists

[hunter5582 in reply to Dovme]

Thank you for bringing up your concerns. Balanced viewpoints and awareness of what is going on is very important to us now more than ever.

There is disagreement among the MPN experts on the topic of hydroxyurea/hydroxycarbamide. The MPN specialist I see avoids using it for nearly everyone. As MPN patients, we do not always agree either. We each have different reactions to HU just as we each have a unique presentation of our MPN. I hope we always have open discussions about our viewpoints and share thoughts freely and respectfully. One of the best things about this forum is the open sharing of thoughts, even when we don't view things the same way.

Since you raised the issue, I will try to be a little more clear about my thoughts. Bear in mind, I am not a physician, just another MPNer like everyone else. Hydroxyurea is a mainstay of cytoreduction in MPN treatment. Many physicians routinely use it, but not all do. Some of the MPN experts (e.g. Jerry Spivak, Richard Silver, and others) have moved away for the use of HU and favor other options (often PEGylated Interferon) when medications are needed. Some of us tolerate HU. Others do not. Many docs are OK with starting HU chemotherapy during the pandemic. Others are not. This is not a situation where there is a clear black and white answer. HU can reduce your immune response, but for most people it does not seem to be a significant issue. HU does require that you avoid live vaccines, but other vaccines are OK to take. Some people really do need to start with cytoreduction ASAP. Others can afford to wait to do so. Each MPN patient has to look at their own situation and weigh the risks and benefits of each of their choices - which medication to take - or indeed whether to initiate chemotherapy at this point in time.

You are quite correct in indicating than may docs are initiating cytoreduction with HU during the pandemic. The level of inherent risk is considered acceptable. This is especially important for someone whose level of risk due to the MPN requires immediate initiation of cytoreduction. For MPNers who are not comfortable starting cytoreduction with HU during the pandemic, they ABSOLUTELY need to to talk to their hematologist about this. They need to review all of their treatment options, hydroxyurea/PEGylated Interferon/other meds/continue to wait-and-watch. They need to work with their treatment team to weigh the risks/benefits of each of their choices then make the best decision they can - based on facts not fear. I would add that the treatment team needs to include a MPN-expert doc. Sadly, many hematologists do not have the KSAs to provide optimal, individualized care. This issue is now more important than ever.

All of the medications used to treat MPNs have a risk/benefit profile. We each respond differently to them. It is just my own opinion, based in part on the research, the advice I have received from my MPN treatment team, and my own negative experience with hydroxyurea that there are other options that are preferable. I believe this would be true regardless of the pandemic. I hope everyone continues to share their experiences and thoughts on hydroxyurea and other medications so we can have a balanced set of views on this forum. I hope all who have a more favorable view of HU continue to share that viewpoint and experience. We are stronger together.

Thanks again for raising your concern. I never want to make others more fearful, but do want to encourage all to voice their concerns and have them addressed. I also want to encourage all MPNers to be assertive in managing their own care, and not just passively accept recommendations without having their concerns addressed.

All the best to you.

[harleydavidson]

Hi Suzy. As much as I hated it, I would feel much safer if we were shielding again. I think I’m going to beg my employers to let me work from home as I’m tele sales in estate agency and have people coming in and out of the office which makes me nervous. Stay well and keep safe. Mel x

[SDJD in reply to harleydavidson]

If you can work from home that’s a much better plan to keep safe.

I know schools won’t close and I don’t want to let my team or the children down. We are doing everything we can to stay safe and it’s the right decision for children to be at school.

From what I’ve gathered from past webinars/ research papers ET patients are no more at risk? But I guess my age is a risk in itself.

If my haematologist was an MPN expert, I am wondering whether I would still be asked to shield.

All hypothetical at the moment, I know but I’m thinking it’s only a matter of time before people are asked to shield again so as not to burden the NHS and to keep themselves protected.

Stay safe too and hope you can work from home. Suzy X

[Mazcd Partner MPNVoice]

Hi Suzy, the team will issue guidance as they did before if shielding is put in place again. Best wishes, Maz

[SDJD]

Thanks for your reply Maz.

Best Wishes, Suzy