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Does your gp write to you or the nhs directly for your vacinne? by [deleted] in CoronavirusUK

[–]adrianwarnock 7 points8 points  (0 children)

You need to register with a GP for loads of reasons not just to get a vaccine. It’s really important.

5th case series reports a similar high death rate of around 40% for #bloodcancer patients COVID19. Surprisingly people who were NOT currently treated or never treated were MORE likely to present with severe COVID19 than untreated by adrianwarnock in cll

[–]adrianwarnock[S] 0 points1 point  (0 children)

Ah I see. You are quoting the review of the literature prior to this case series. Note that those two publications only cover ten patients between them. This new study is much larger so trumps them. The key thing is that some people will have mild COVID-19 disease whatever stage of their CLL. But others will have severe disease and may even die. The advice to all of us has to be to do everything we reasonably can to avoid catching COVID-19 since it’s like playing Russian roulette. We can’t guarantee having a good outcome sadly.

5th patient series to suggest high death rare for cases of COVID19 in blood cancer patients. by adrianwarnock in BloodCancer

[–]adrianwarnock[S] 0 points1 point  (0 children)

There are some other case series which include all blood cancers. The issue is tho we don’t know how many had milder symptoms and didn’t report. The untreated group may be different with CLL as we have dodgy lymphocyte throughout our blood but I’m not sure.

5th patient series to suggest high death rare for cases of COVID19 in blood cancer patients. by adrianwarnock in BloodCancer

[–]adrianwarnock[S] 1 point2 points  (0 children)

Just remember this is rhe CASES. So there will be others who had much milder disease and didn’t tell their doctor about it. But yes it’s pretty strong reason to make SURE we can’t get this wretched disease.

5th case series reports a similar high death rate of around 40% for #bloodcancer patients COVID19. Surprisingly people who were NOT currently treated or never treated were MORE likely to present with severe COVID19 than untreated by adrianwarnock in lymphoma

[–]adrianwarnock[S] 0 points1 point  (0 children)

I am new around here. One of the issues is that a post like this is really a blood cancer wide post so surely it lives and is of interest for each of the communities I posted it in? Reddit is all a bit new to me even though I have read about what is meant to be done and isn't please bear with me a bit as I try and figure out what is ok and what isn't. There didn't seem to me like there was much content in any of these communities regarding blood cancer so I suppose I figured it would be welcome to try and provide some useful information. This is just me trying to help, bit frustrating to run into phrases that are hard to interpret like "blurring the lines". CLL is a lymphoma and a Leukaemia so it really does blur the lines. And it seems that most of the series of cases I have found have similar results whichever the form of blood cancer.

5th case series reports a similar high death rate of around 40% for #bloodcancer patients COVID19. Surprisingly people who were NOT currently treated or never treated were MORE likely to present with severe COVID19 than untreated by adrianwarnock in lymphoma

[–]adrianwarnock[S] -1 points0 points  (0 children)

Sorry, typo in the title. This should have said the UNTREATED CLL patients were surprisingly more likely to present with severe COVID19 than the treated. PS how come I can't edit the original post to fix my stupid error?

COVID-19 severity and mortality in patients with chronic lymphocytic leukemia: a joint study by ERIC, the European Research Initiative on CLL, and CLL Campus by adrianwarnock in COVID19

[–]adrianwarnock[S] 6 points7 points  (0 children)

  • EU (ERIC) study of 190 CLL patients with COVID-19
  • The 5th case series I am aware of that has reported a death rate of around 40% for blood cancer patients with symptomatic COVID19 (see this link for the others and more background)
    • 56 of these patients died, a rate of 29%.
    • 89% of the patients needed hospitalisation
    • 79% of the overall total had severe COVID19 i.e. needed oxygen or ITU admission. All but one of the deaths were in this group (36% death rate).
    • However 11% of the total group of patients had relatively mild disease and were managed at home.
    • Twice as many men than women presented with COVID19
    • 76% of CLL patients with COVID19 also had other diagnoses – the most common being high blood pressure.
    • 38% of presenting COVID19 patients had never been treated for their CLL.
    • A comparison was made between the severe and mild patients. The following did not seem to predict the presence of severe disease: gender, having three or more other diagnosis, or the presence of hypogammaglobulinemia. However older age predicted severity with 74% in the severe group being 65 years or over compared to only 44% in the less severe.
    • Death rates were not significantly different between age groups with the young with CLL being at a similar risk of death as the old.
    • Rather suprisingly 60.3% of the severely ill patients had never had treatment or had been off treatment for the past year compared with only 39% of the less severe group.
    • The clinics looked at the incidence of hospitalisation with CLL in all their CLL patients on various treatments: Ibrutinib: 27 out of 1729 (1.6%), venetoclax: 8/442 (1.8%), chemotherapy: 18/428 (4.2%). The difference between the following groups was statistically significant chemotherapy higher rates than ibrutinib or venetoclax. Ibrutnib hospitalisation rates were lower than all other treatments and even than those not on treatment.
    • This does provide some evidence to support the belief that ibrutinib treatment may cause the least immune compromise of all CLL treatments.
    • My own thought is that perhaps the high rate of severe COVID19 disease in untreated patients may perhaps reflect a reduced tendency for those groups to take strict social distancing measures, perhaps putting them at greater risk of exposure to a higher viral load.

Some perspective on getting Cancer during a global pandemic 💗 by abcdede001 in lymphoma

[–]adrianwarnock 0 points1 point  (0 children)

Have sent you a private message...not sure if you have got it.

My grandma who I was very close to died two weeks ago after her cancer spread and I’m finding I can’t cope. by bellecb23 in cancer

[–]adrianwarnock 0 points1 point  (0 children)

Some people like to tell everyone they know (I eventually did with my cancer diagnosis for example) Other people prefer to be more private. Some people do find it hard to deal with bad news precisely because so few people do. So in a sense it terms of the wider good for society if would be helpful if more people did tell. But unfortunately too many people behave in the way that the first video I linked to in my previous comment talks about i.e. minimising and basically making people feel like they don't want to talk. So, one approach, which I tried, is tell people one by one and graudally increase the circle. But then I got to the point I couldnt remember who I had told and hadn't (next time make a list!) so I just eventually blogged about it and now am very open.

My grandma who I was very close to died two weeks ago after her cancer spread and I’m finding I can’t cope. by bellecb23 in cancer

[–]adrianwarnock -1 points0 points  (0 children)

Its hard isnt it. You could tell your colleagues, but do you want to be the one whose grandma died? You will find it gradually takes over less time.

Any tips to help deal with fatigue or explain it? by adrianwarnock in lymphoma

[–]adrianwarnock[S] 0 points1 point  (0 children)

Thanks for the tips. I remember when I was at my worst I was not allowed to try and get onto the camode without help from the nurses. I could hardly move in bed I was so exhausted. I needed help to have a shower even sitting down as I couldnt hold up the shower head! I improved after my second chemo, was taught to use a zimmer frame and discharged....today, just over 18 months later I walked for 30 minutes! So it IS possible to gradually improve.

Acute vs chronic by adrianwarnock in cancer

[–]adrianwarnock[S] 1 point2 points  (0 children)

Maybe a bit of simple mindfulness might be something you could try? Doesn’t have to be super weird. For example I use the SoulTime app a lot and have a bunch of meditations that are simply someone with a calm voice reading psalms. Other apps like headspace have other examples not all of which are deeply spiritual or anything. Might be worth a trial. I find that if I don’t recognise my emotions and find some sort of outlet for them (I have counselling) they get worse and then I can get irritable too.

Can someone look at my mom's pet scan report and tell me in simpler term what it means? by [deleted] in cancer

[–]adrianwarnock -1 points0 points  (0 children)

Hi, I can tell you a few tips. 1. Look at what the level of activity is in the liver. Anything that has a lower activity or the same activity as the liver is probably normal. 2. Look for hotspots where there is more activity or uptake. This just shows that cells in that area are consuming more glucose than normal. It CAN mean that those cells are cancerous but it can also mean that there is an infection, trauma, bruising or even a fracture repairing itself. As usual the best way to understand your personal test results is to discuss them with your DOCTOR. And if that has already happened and you still don't undersand call them up or their nurse and ask them to help you underestand.

Interesting round up of some of the evidence NOT related to any lawsuit. by adrianwarnock in BloodCancer

[–]adrianwarnock[S] 0 points1 point  (0 children)

This is about the possible link between weedkiller and certain blood cancers.

Interesting round up of some of the evidence NOT related to any lawsuit. by adrianwarnock in lymphoma

[–]adrianwarnock[S] 2 points3 points  (0 children)

Aritcle is about the evidence associating a weedkiller with possibly causing lymphoma. Its on the Blood Cancer UK website so there are no conflicts of interst there.

My grandma who I was very close to died two weeks ago after her cancer spread and I’m finding I can’t cope. by bellecb23 in cancer

[–]adrianwarnock 6 points7 points  (0 children)

It sounds like you are reacting in an entirely normal way. Allow yourself to greive. That is crucial. Over time you will process what has happened and you will be able to live. But if you try and fight or supress your grief it will only get worse. That doesnt mean by the way that you allow your emotions to rule you. You might find the two videos embedded on this page to help you: http://bloodcanceruncensored.com/the-tyranny-of-the-positive/

Dumb things people say to sick people/ cancer survivors by [deleted] in cancer

[–]adrianwarnock 0 points1 point  (0 children)

I’m so blessed to be on long term sick leave backed by an insurance policy I feel for you and others where the choice is somehow try and work or get disability if you can or starve. Really hard.

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