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Blood Cancer and Covid: What happens if you test positive?

29th Mar 2022

We know it may be a worrying time for many of our community at the moment, given that the rates of covid infection are rising again. We talked to six people with blood cancer about their experience of accessing new antiviral and antibody treatments after they tested positive for covid.

A positive covid test

Ian, living with hairy cell leukaemia (Antibody infusion)

"I’ve got hairy cell leukaemia and tested positive for covid-19. It started with a sore throat on the Monday, but I got two negative LFTs. However, that night I started coughing and really struggled to sleep, so the next day I took two more LFTs, the second of which was positive. I then did a priority PCR test and got the positive result on the Wednesday morning.

"I contacted my GP immediately who had already received my confirmation of the positive PCR result. I was contacted by the local hospital on Thursday and offered an infusion of sotrovimab on Friday, which took about 30 minutes, and then another 60 minutes’ wait to make sure I had no reactions.

Ian, living with HCL

"Obviously, a positive result is scary for people with blood cancer, but my advice would be to make sure you do a test and inform your healthcare team as soon as possible and be honest with the team about how you’re feeling. I found plenty of rest helped. I wouldn’t have hesitated to contact my GP if the Covid Medicines Delivery Unity (CMDU) hadn’t contacted me first, as I am certain the infusion was beneficial to me.

"I found my experience after testing positive for covid to be easy and hassle free. I have made a full recovery."

– Ian, living with hairy cell leukaemia

Did you know?

You can now be referred for an assessment for Covid treatment after registering a positive lateral flow test via 119 or www.gov.ukyou don’t need to wait for a PCR test.

"I’m currently in active treatment for acute lymphoblastic leukaemia, and I tested positive for Omicron variant of covid-19 on the 22nd December. I had a sore throat and slight cough since the day before and contacted my haemato-oncology team.

"I was naturally nervous as I had been told to avoid covid, like many with blood cancer. My clinical team were very reassuring and arranged for a PCR test the same day and asked that I kept them updated on my symptoms."

Nicolle, in treatment for ALL

"Unfortunately, due to the proximity to Christmas I was unable to get any antivirals in time. Despite this, I seemed quite well during my 10-day isolation period. The cough went pretty quickly, and I was left with a sore throat.

"A week later, I did contract covid-related pneumonia and had to spend days in hospital for oxygen. This was the scariest time of the process as it was a physical sign that I actually had covid, as I had been feeling so well! However, the ward I was admitted to had been treating people for covid since the start of the pandemic and were absolute professionals. I have now recovered and am waiting for my next treatment."

– Nicolle, on treatment for acute lymphoblastic leukaemia

Remember:

Keep an eye on your symptoms and contact your clinical team as soon as possible if they get worse.

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Susan, living with essential thrombocythemia (Antibody infusion)

"I have essential thrombocythemia and I take hydroxycarbamide. Having shielded since March 2020, I tested positive for covid 19 via a lateral flow test on a Friday in January, a day after my husband did. We both did a PCR test that day and got positive results on the Saturday morning. I called 111, as I had had the letter from my haematologist about treatments. It then took six hours to speak to a doctor, who said that they would refer me to the Covid Medicine Delivery Unit (CMDU). By the Sunday, I was extremely unwell despite being triple jabbed. I rang 111 back as I was told I would hear within 24 hours, but was told that my CMDU did not operate on Sundays! At 9am on Monday, day four, I rang my haematology nurse who said that she would chase it up.

"During the day, whilst very unwell and in bed, I had calls from three different doctors, all of whom required my full medical history. Finally, at 3pm I had a call from a doctor at the local CMDU. After the assessment, I was told that I wasn’t eligible for any treatments. Half an hour later, I received a call from a specialist pharmacy company who offered me an IV antibody infusion the following day (day five). Only problem was that it was 33 miles away!

"I accepted and rang the haematology nurse the next day to confirm that it was genuine. She spoke to the consultant who advised that I have it, and I’m very glad that I did because I started to feel better after about two hours.

"The whole process seemed to need to be improved and made more efficient – I do wonder whether I would have received treatment had I not been so persistent."

– Susan, living with essential thrombocythemia

Did you know?

You should get a phone call within 24hrs of a positive test, but make sure your haematology team are aware as soon as possible.  You team or your GP can make a referral on your behalf, and it’s important they’re involved in any decision making, particularly if you’ve been told you won’t have treatment.

Caroline, living with myeloma (Antiviral treatment)

"I have myeloma and am currently on sixth line treatment (including two stem cell transplants). I managed to avoid catching covid after been very careful over the past two years, but having had four doses of the vaccine and seeing the number of cases drop, I started to venture out a little. I went for a Sunday lunch with friends, and although we all did LFTs prior to the event, the location was crowded and badly ventilated, and unfortunately a few of us ended up contracting covid. I started to have symptoms less than two days later. I took the PCR test I had been previously sent, following the instructions to register it carefully.

"I received a positive result the following morning and logged my result on the NHS covid-19 app. I was called by ‘NHS Covid at Home’ who went through a lot of questions to determine my eligibility for treatment, and once it was established, they said I would be referred to the pharmacist."

"The pharmacist called back mid-afternoon and discussed the drug options (IV or capsules). I was only eligible for one capsule of molnupiravir, which was duly dispensed and all we had to do was collect it from our local hospital. I was able to start the capsules the same day as my positive result and within 36 hours of first symptoms.

"My final call of the day was from our own GP practice to ask how I was and to ensure that the system had worked and I was getting the correct drugs.

"The system and the antivirals worked very well. I had heavy cold symptoms for about four days (headache, sore throat and a cough) but improved quite well by day eight."

– Caroline, living with myeloma

Did you know?

If your lateral flow test isn't giving you a positive result, but you suspect you have covid, you can still take a PCR test. A drive-through PCR test may be the quickest way to get an accurate result.

Joanna, in remission from Hodgkin lymphoma (Antibody infusion)

"I was diagnosed with Hodgkin lymphoma in the middle of the pandemic and was pretty scared of catching covid. Despite our best efforts to shield me, in February this year I developed cold-like symptoms. I did several lateral flows, which were all negative, but I’d read that it was important to start treatments early so as a precaution I also did a PCR test and that came back positive for covid."

Joanna, in remission from Hodkin lymphoma

"The following morning, I got a call from the team co-ordinating access to the new treatments to assess my symptoms, which were ‘moderate’ by that point. They confirmed that I was eligible to receive the treatment and the next day, I went to a local treatment centre and received an antibody called sotrovimab via an IV. It was really easy – after months of chemo, I’m pretty used to sitting in a chair, hooked up to a drip! The nurses monitored me for an hour after and then I went back home.

"I think the treatment made a big difference to how serious the infection was and has helped me recover faster. I’m still going to be more cautious than the average person but it’s really reassuring to know that covid treatments are there, and that they work, if I need them again in the future."

– Joanna, in remission from Hodgkin lymphoma

Remember:

For many people, the process of accessing treatment after testing positive has run smoothly, but if that’s not the case for you, be prepared to be persistent if you don't think you've been given the right advice. We know this is sometimes easier said than done, so we’re here to help if you’re struggling.

Russell, living with chronic lymphocytic leukaemia (Antibody Infusion)

For two-and-a-half years we as a family have followed all of the rules of covid. On Saturday the 8th January 2022, I had my six-year-old granddaughter for the afternoon, but unbeknown to everyone, a child at her school had been sent to school on the Friday even though she’d tested positive for covid. By Monday morning, my granddaughter and I had both tested positive via a lateral flow test. I had a very hoarse throat and headache. I spoke to my doctor as I knew I was eligible for an assessment for antibody or antiviral treatment.

The doctors were very vague about this, yet after a few conversations, they completed an application form which they sent to the covid team at our local hospital. I then had a telephone conversation with a doctor from the covid ward, and he said he would ring me on Thursday, by which time I’d have received my PCR result. On Thursday at 9.00am the doctor rang - my PCR test was positive. He asked me to attend the covid ward at the hospital on the Friday morning, the key thing being that these drugs had to be administered within five days of symptoms starting.

Russell, living with CLL

I got to the hospital on Friday at 8.30am and was escorted to the covid ward where two side rooms had been created for the infusion process. Everything was explained, and my temperature and blood oxygen level was taken a number of times. The consultant then had a conversation with me about how I felt and the infusion process was started. It took 30 minutes, and I then waited for a further hour to monitor for side effects. I then came home and isolated until I tested negative by LFT.

In all, my main symptom was a bad headache, and this went away about five days after coming out of isolation. I had phone calls for 14 days after the infusion from the covid ward to record and monitor how I felt.

I have no side effects and my fourth vaccine will be given mid-April, which will be 12 weeks after the infusion. The process was well managed and I felt fully supported.

– Russell, living with chronic lymphocytic leukaemia

A Lateral Flow covid test

Find out how to access covid treatments in your area of the UK

Read more