Professor Dr Chris Fegan talked about CLL and COVID19 and answered previously submitted questions.
Following on from AdrianUK's post ( healthunlocked.com/cllsuppo... ) this is a second report.
His main message was that ALL CLL and SLL patients should be shielded, even stage A, watch and wait patients because our immune systems are not normal. He emphasised just how very infectious this virus is and likened it to the infection rate of Ebola. However, CLL patients are no more likely to catch this virus than any other person.
Within the home, if one person is going out then you should try to isolate from the person who is leaving the home but if your whole household is staying indoors then after 10-14 days you do not need to isolate from each other.
Important to consider how the virus can get into your home and the main routes could be your shopping and the post. He reiterated the important advice to wash your hands regularly and keep them away from your face to stay safe.
Can friends come to your gate and talk - yes! Just maintain the 2m safe distance.
Should you go out to get your prescription - No, try to get someone else to do it.
He has some interesting information regarding their practice for patients that need to start treatment. If the treatment can safely be delayed then delay it if you and your Dr agree. However, if starting treatment is urgent then giving something that does not have such a bad impact on the immune system is better. Chemo knocks out not just the immune system but also neutrophils which deepens the immunosuppression. That might be chlorambucil or, as AdrianUK mentioned yesterday, there is a patient access scheme for Acalabrutinib which is a good alternative for many patients. Venetoclax has the disadvantage of having a bigger negative impact on neutrophils and the need for close monitoring at the start/ramp up phase so unlikely to start on this in the current situation.
Interestingly he also said that for those patients on Ibruitnib/Acalabrutinib then, theoretically, the treatment could be protective from the cytokine storm that causes the damage in COVID patients.
For some patients a pause in treatment is reasonable and a better option than continuing with chemo-immunotherapy.
For patients in clinical trials, they are giving them 6 month appointments and couriering out their medication. There is no risk to the drug supply. Blood tests are not easy to arrange with GPs so ask your consultant what they recommend. BUT do not wait until a day or two before you need any advice as most of the haematology teams are being redeployed to the COVID front line and it could take a while to get a response. Email might be better than telephoning.
Regarding ivig - they have been giving their patients 3 months of antibiotics to see them through this period. Going to the day unit for ivig may not be possible and too great a risk to all concerned. Those with sc ivig should make sure they clean it well when it arrives.
The biggest threat to any CLL patient's life is a chest infection, at any time, not just now with COVID. Only 15-20% of CLL patients make antibodies to the flu vaccination so vaccination will not necessarily be the answer for most of us. Herd immunity will be very important.
In his role as R+D Director he said they had opened 8 COVID studies in the last 3 weeks comprising three strands - 1. anti virals use, 2 stopping the immune systems inflammatory response and 3. use of oxygen pressure and positioning patients on their front.
Finally, he said that if you need to go to hospital do not worry if the staff do not have masks, goggles and it seems business as usual. That is a good sign that you are in a non COVID area of the hospital.
Remember, stay home, stay safe
Jackie
Vaccines – at what point do they become a disbenefit?
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