Treatment : Has anyone in the UK currently under... - MPN Voice

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Treatment

heathermc
heathermc

Has anyone in the UK currently under treatment been told their medication or treatment is going to be put on hold.

I haven't heard anything personally but have seen something mentioned on Facebook via Blood cancer charity

I wouldn't have thought if your already on a treatment plan they would stop this or delay it.

I've a telephone consult tomorrow so will know more.

16 Replies
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My treatment is carrying on, I’m on pegasys. I haven’t heard of anyone, in the uk, having their treatment stopped.

heathermc
heathermc in reply to EleanorPV

Thanks.. I didn't think so but there was a Facebook post on Bloodwise site to be aware.

Luckily I think If we are on treatment it should continue.

Like anything things change but thanks for the response.

I believe the treatments that are being put on hold are more aggressive forms of chemotherapy, due to it severely weakening the immune system, as well as the added risks of patients having to be brought into hospital, a number of patients are being offered chemo in tablet form or surgery. But this is still very much case by case rather than a blanket stop on all medications. Meds to manage MPN’s are highly unlikely to fall into this category as most of us are self sufficient, administer at home and don’t wipe out our immune system.

Hi,

I received a letter from Southampton Hospital Haematology dept Saturday 4th April to say I was to take a treatment holiday,

I had my scheduled telephone appointment 8th April to say basically my risk under ET CaLR were lower by not taking Pegasys but my risk of getting COVID19 were greater, so therefore I need to stay shielded for 12 weeks and stop my treatment.

I’ve also had a nasty sinus infection, trying to let it go by natural remedies and told my interferon would not help me recover so not to even take my last injection.

They will provide me with another blood test form & telephone date in due course.

I believe my consultant was doing it on an individual basis.

I am frustrated as I’m fit, healthy and need my daily exercise but needs must.

Hope this helps Theresa

hunter5582
hunter5582 in reply to Tpearson

I am a bit surprised to hear a recc to d/c Pegasys temporarily. This does not sound like a standard protocol. Since you have concerns about this, I would suggest getting a second opinion from a hematologist that specializes in MPNs. it is a truism that assertive patients receive higher quality care. Passive patients do not. Verifying that this is the best course of action for your case would be in your own best interests. It is both your right and your responsibility to be assured of the best decision making and to maintain the best quality medical care.

All the best. Stay safe and well.

I received my medication via courier from guys hospital to Yorkshire yesterday.

Thank you Guy’s hospital

mhos61
mhos61 in reply to Wyebird

Wow, impressive.

Wyebird
Wyebird in reply to mhos61

Yep- I’m not paying gym membership at the moment so I’m going to donate it to MPN voice and Guy’s

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I have just got 3 months supply of hydroxy ladt week Let us know what your Consultant says I have got my tel appt next week will ask the question too

Yes,my treatment Lenalidamide has been put on hold for 8 weeks as it drives my neutrophils down.At the moment only .9.I also suffer badly from bronchiectasis (chest condition) and have recently had a bad flare up.I am at the moment on a nebulized antibiotic as well as daily tablet form.

Normally if my neutrophils are low my haemo tells me to leave off a week and if blood test proves the neutrophils have gone up to 1 then restart.I think in view of coronavirus and my other condition

for me it was a sensible decision to leave off.

I have high risk MF and Low risk MDS.

Apart from neutrophils dropping this drug is good for me.Ruxolitinib was not good for me.

My last (very brief) consultation was by telephone rather than in person. I was told the next consultation would be in six months' time rather than after the usual three months. It was explained that this was because of impact of the Corona Virus. My supply of hydroxy was delivered by courier the next day. I have PV & RT and take hydroxy daily.

Had my consultation and there's no mention of any treatment being stopped or delayed. Just a mention of a change in tablets to decrease hu if platelets continue to decline. Reassuring and upbeat is how I feel now. Good to ask questions but not panic. Hope that's reassuring got some..

I spoke to my unit yesterday i have a consultantion a week tomorrow and treatment that has now change to a telephone appointment and they are sending me my bloods form out so i have to have my bloods do e before the phone call. My gp are finally being understanding and said once i get the forms to call and someone will come out to take my bloods, still waiting on my letter as been off work since the 24th, got confirmation today a letter was sent out in the post yesterday from my Gp. Not still sure about treatment yet till the bloods come back. Be safe everyone some of us have been chasing this up for weeks. X

Hi greetings from Fleetwood England.

I have my three monthly checks, telephone consult and am due in May and attend the path lab at my local hospital.

If your blood test sits at the G P surgery in the fridge it degrades over time.

Be mindful of this.

Always go by your team.

Good luck and keep safe.

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Has your treatment been stopped Heather ?

No it's continuing.. They said They may take me off the HU once my platelets go within normal range but that's to allow my Haemoglobin and Neutrophils to recover. At present no change for another 4 weeks.

Dr was clear that any treatments will continue .. not to worry as my plan was already worked out. So I'm reassured..

Don't quite know what normal is anymore 😊

Take care and stay safe .

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