I just wanted to share with everyone that I had a phone call from my haematologist to update me on what is going to happen regarding how I'm going to be looked after. Firstly my hubby and I isolate as high risk with blood cancer, secondly someone will come to my home to take blood which will then go to lab for testing, haemo will contact me with results and adjust chemo meds accordingly. Thirdly meds will be delivered by courier, definitely no more hospital appointments until pandemic over. I really just wanted to share this for anyone who is in doubt as to whether we ET folks are at risk, yes we are so please please please all my mpn buddies stay home, keep safe and take very good care of yourselves in these uncertain times. If you already know all this apologies but just cannot stress enough how much each and every one of you mean to me and want to thank you for being my dear friends.
Love Phyllis ❤️
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Simris
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Yes I spoke with my GP yesterday who have added me to the NHS list due to my medication ( interferon )
I was missed from their original list as they had a criteria to follow which I assume is the type of illness ? I mentioned my medication and they agreed I should be high risk and they are sending me a covering letter for work until they get me added to the NHS list
So yes it is the GPs who are compiling the lists
If you haven’t got a letter and need one I suggest calling your GP and advising them about your meds
Really good news to hear. Thank you for the update. I shall be calling my GP on Monday. When i rang the other day the receptionist had no idea what I was talking about and said they didn't have anything to do with the list. Obviously someone needs to educate all GPS and receptionists regarding all mpn,ers. And who compiles the list. Take care and stay safe.
It is very frustrating. I'm trying to be patient. Pardon the pun!! But as its the weekend and can't do anything about it i am feeling quite stressed as to if i will get paid from work or not because they are adamant on no letter no pay. I feel my health must come first though so i shall stick it out for as long as i have to. All the best to you all.
Like you Gunner73, Grumpyfairy & poly2 and I also phoned the GP, twice in fact as I wondered if they'd have had more information across the space of a week.
Both calls the receptionist couldn't help. First time she knew "nothing about any letters" and the second time I told her that I had blood cancer; explaining I'd read conflicting advice from Bloodwise & MPN Voice so needed clarification because my email to haematology came back with an out of office message (until 30th). She sounded sympathetic but said she didnt know & that I really needed to consult with my specialist.
After I hung up I thought, that's not right. It should be... I'll take your name and speak to head of practice and come back to you! Considering I'd not even specified which blood cancer I had, it seemed totally lacking a duty of care during unprecedented times. Though in fairness to them perhaps different authorities are proceeding differently with contacting patients.
Stay safe everyone. I really hope you get clarity poly2
I've not had any notifications from GP, perhaps will do coming week, it was my haematalogist who contacted me to keep me updated, he is absolutely brilliant, could not ask for better care.
Would it be really cheeky to ask which age group you are in, as this has a bearing on our level of risk? I am 58 and my haematologist was adamant that I should continue to go out for walks. Luckily I live in an area where it's easy to avoid people.
I asked because the advice posted on this site makes a distinction according to both age and medication. Personally, I am being ultra careful but common sense, as well as medical advice, tells me that a walk with no contact is safe. Stay safe too.
It would seem that if you are over 70 that is the criterion, whether you are on meds or not - which I am not. If you are under 70, then the medication is taken into consideration for the reason you say.
Actually age does matter in predicting risk. Everyone over age 60 is considered at elevated risk. My hematologist agreed that being age 64 was likely a higher risk factor that PV (no chemotherapy). However, there are still unknowns re. COVID 19 and MPNs, so it is not a certain thing. I think it is safe to say for all of us that walks out of doors are safe providing you maintain distance from people and avoid surfaces that are likely points of contagion. I would actually be just a worried about deconditioning and weight gain, nit to mention vitamin D deficiency, from staying huddled inside all the time. That and it would drive me stark raving mad.
Hi all again. I have prv and portal vein thrombosis and on hydroxycarbamide and warfarin. I was told by my haematologist when I was first diagnosed that i am open to infection due to the disease and hydroxycarbamide. I know i am susceptible as I have had numerous infections in the past few months. Please keep us all updated as it is the only communication we have at the moment.
Don't mind sharing , I just, had an isolated party with hubby to celebrate my 70th birthday on Thursday past 26th march, what a rubbish way to spend any birthday let alone big milestone (will be BIG celebrations with family when pandemic over). Not too sure if age really matters, I'm just very relieved that I have a wonderful haemo.
Belated happy birthday Phyllis! How frustrating not to be able to celebrate as you would want to. Hang on in there and look forward to a very special party when this is over!
I hope you won't mind me asking but is it only ET that you have? And if so how high a dose of hydroxycarbamide you take? I have ET and PV and take 500mg 3days and 1000mg on 4days plus aspirin.I haven't had any message other than the general text sent to everyone in the UK.
Also where your haematologist is? I'm assuming you live in the UK?
I don't expect they have enough staff to cope with the number of letters that need to be sent out. They really shouldn't keep making promises they can't keep, as it confuses people who are already anxious.
Hi Simris. Firstly belated happy birthday. I was 80 last month and have heard nothing from GP or Haemo. I have ET JAK2 and also Polymyalgia Rhumatica and am taking Hydroxycarbamide, Aspirin and Prednisolone (STEROID) so theoretically high risk. I went to the surgery on Friday for a leg dressing and mentioned to the Practice Manager about the letter and she didn't know what I was talking about the nurse said it was nothing to do with her. Thank goodness for this site and all you helpful people. Incidentally I'm doing my own shopping as there is no one else to do it but taking all the necessary precautions. I have also been taking my daily exercise on my bike. I live in Kent. Stay safe everyone.
I am P V taking Ruxolitnib...so been isolating where my home is in S W France for several weeks now .Macron shut everything down and people have obeyed. Unlike you I don't even go out for shopping,hubby did at first but then stopped as he has a lung prob,we are lucky as a young friend gets things we need and leaves them at the driveway gate.
We have horses & dogs so are normally active and in glorious countryside,long way from town ,village 5 mins in car.You are amazing to cycle for your needs,reading your post ,I realised how lucky I am.
Keep well,keep going....our age does remember hard times growing up in the 40 s & 50s....perhaps it made us strong.Very very best to you. Sally
Hi Sally. What part of SW France do you live? I cycle in France a lot and have just had to cancel 3 cycling tours Valognes, Brittany and Champagne region. On my bike unlike walking I see very few people and cars and I keep to my 2 hours exercise. Let's hope it will remain.
We are Aquitaine,between Bordeaux &Toulouse,lots of tourists here on cycles in summer /Autumn....lots of hills tho!Lovely Bastide villages,I have friends in Kent ,Sandwich,they did live near us here ,but went back to U K 2 years ago as did many others before Brexit.
Keep pedalling.!!Good exercise and fresh air ,like horse riding.
Keep safe Phyllis and thank you for this. I was supposed to have an appointment ( phone) last week and was told fine to go into hospital for a blood test before. I didn't go as I had a bit of a scratchy cough and haematologist wasn't too bothered...? I've got Jak2 PV and ET and on anagrelide, not sure if I should be isolating? I'm 40.
Hi, my haematologist told me that I am not even in the vulnerable category, and should follow the advice for the general population!
I have ET, on aspirin and hydroxycarbamide. I'm continuing to self isolate, finding the differing opinions cited here by different haemotologists really concerning!!!
Out of curiosity, according to the MPN advice we were sent, would you have been considered high risk based on those 4 subsections also?
I ask because, according to that (& my last contact with my haematology nurse 2 wks ago ) my ET places me at no greater risk, based on my younger age & aspirin only. I plan to phone my haematologist tomorrow morning as I'm totally confused. Planning to stay in but need to feel clear!
Yes I'm in the UK. Royal stoke hospital. I now have a really sore throat which I have had for over a week now. Not sure if it is down to the hydroxycarbamide or a virus but i have been self isolating for nearly two weeks now and throat getting worse. Will ring GP tomorrow to see if i need antibiotics and to ask again about the list to see if they have any further clarification. Just been on the pulse news item and according to that it gives a guideline of criteria for GPS to follow. I will keep you all posted. Take care all.
Now this is the first comment I have seen on here about experiencing symptoms, similar to those of Covid-19. Because I have most of the possible side effects of ET, JAK2+ and Pegasys, I have been questioning from the start, how will I know if it's that or Covid-19? I spend most of the day and night overheating and feeling cold. I have a constant headache and body aches (flu symptoms) and chest and breathing issues, which vary throughout the day. this morning I woke up with a sore throat! I normally have a cough but not permanently so this is what I am using as my guideline. No cough, no Covid-19. Am I right or wrong? I'm self isolating anyway but what happens if I miss the fact that I DO have it?
I haven't received any correspondence re my blood cancer but have managed to register on Sainsbury's site as vulnerable. These are frightening times. Stay safe. x
Sorry you're not feeling well today. It's a difficult one. I have been isolating for the past couple of weeks due to my grandson being sent home from school with a temperature and cough. Almost sure it was just the normal cold that goes around this time of year but because i had been in close contact with him i was told to self isolate. I'm sure mine is just a throat infection which I'm prone to anyway and had a mouth abcess a couple of months ago. My consultant wants to change my hydroxycarbamide to interferon but I believe the side effects may be worse. If you have a good GP that understands your condition i would give them a call. If not your haematologist would be the best contact. Get well soon.
Thank you so much for this - I have also had conflicting advise that should be using vulnerable people guidelines but should still go for a walk once a day and also can go to shop once a week if need to - I have a husband that still needs to go to work as manages chicken production so the government given letters to him to continue working and I have 2 kids that I am home schooling at the moment so impossible for me to fully self isolate?!? My consultant has said that if I get symptoms I’m to come off hydroxicarbimide straight away and ring them for advice! He confirmed all my bloods were fine though apart from platelets at 497 which is normal for me so wonder if that helped decision as to what I need to do? My gp has no idea about my condition and will probably request a letter from my consultant to sort a letter from me but will ring in the morning and see what they say. How are your blood results at the moment? Is all stable? Take care
Your very lucky that your Haematologist is so good. I got in my touch with my GP on Friday ( having been told by both my GP and Haematologist on Tuesday that neither knew how the NHS lust was being drawn up and couldn’t help me) and said I hadn’t received any contact and was getting worried about whether I was high risk or not and was told that people are being contacted and to wait until the end of next week and if I haven’t heard anything then get back in touch.
Please do not feel alone or down, I guess consultants are struggling to get thro to everyone, I do feel very grateful that mine has been excellent, hopefully you will get some guidelines this coming week. Please please do not feel alone and contact me any time, we mpn'ers are all here for each other and if I can help in any way please let me know.
Thank you so much Phyllis x I have to keep giving myself a talking to and reminding myself that actually I’m in a very good position compared to others.
A man on a motorcycle delivered 4 mths worth of Interferon and consultant at Guys doesn’t want to see me for at least 4 mths, in line with your post and the general sentiment.
Thank you for your lovely message. I wasn't sure whether we are high risk , so very helpful to stick together and help everyone perhaps feeling low or needing help.
Hope everyone is well cared for and all meds sorted by our fabulous teams.
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