2 years of shielding and today I tested positive

[Harvist]

During the night I felt ill. Lots of sneezing, uncomfortable head and a little cough. No improvement once up and moving. Didn't feel dreadful and under normal circumstances would have assumed a cold. But I had LFTs so I did a test which was positive. Gave it an hour or so and did another one which was also positive. Time to use the priority PCR which I had been hoarding. Sent that off immediately.

As suggested I tried to speak to my GP. What an awful experience. I explained my condition and my need for someone to speak to and was offered a telephone appointment on Monday!

I pointed out the issues concerning antivirals and was told in no uncertain terms that I had to speak to a GP and the earliest chance would be Monday. I was polite throughout but made it clear this wasn't the process we needed as CLLers. She promised a call from her manager, which came 30 minutes later. Again, not much knowledge was on display but I was offered a telephone call later from a GP.

Meanwhile I rang 111. Had to wait almost 30 minutes to get through but they were much more helpful and knowledgeable. After the standard questions I was promised a callback from a medical clinician which happened within the hour. Again lots of questions but an email was sent there and then to my local CMDU requesting contact with me. She said within 24 hours.

Later this afternoon my GP rang. Opening lines were "I don't think you are on the priority list." He read (probably for the first time) the letter from NHS to GPs. I then read out to him the bit that we have all seen on here that specifically refers to CLL patients inclusion "chronic B-cell lymphoproliferative disorder, regardless of treatment (eg CLL)"

He also professed to not really know anything about the CMDUs. He has also sent an email to them now and I am still waiting for someone from the CMDU to get back to me.

The point of this rather long Post is to emphasise that we still need to fight our corner to have the chance of proper treatment and many in the medical profession are not up to speed on what that might be.

I still don't feel really ill and have identified only one place I might have come into contact with a covid carrier. It was in the open air but the waiter who served me wasn't wearing a mask. Has he infected many more customers? No-one will ever know now with no mask mandate and no statutory duty to report infections.

Meanwhile I sit and wait for the magical, helpful call.

[mrsjsmith]

So sorry to hear this news we all dread but good you were on the ball and I hope you get your call tomorrow.Regards

Colette

[Harvist in reply to mrsjsmith]

Thank you, Alan

[Panz]

You hang in there and fight until you get results….sad, very say we have to almost get nasty!!!

Panz 🙂☘️💕🙏

[Ghounds]

I hope the system works as it should and that you get the treatment you're entitled to. Very best wishes for a speedy recovery.

[Harvist]

Thanks

[Tommays56]

Sorry to see you go through this

My understanding is Covid is spiking in your country and hopefully for the last time

[Poodle2]

Sorry Harvist, hope you hear from them soon. Some of the units are open even over the weekend, I got a call from them on a Sunday. Keeping my fingers crossed 🤞🏻

[Harvist]

Thanks for that, Alan

[Smac29]

What a pain! You gotta wonder why at this point it’s so difficult. Good luck and hope you feel better!

[Walkingtall62]

Are you able to call your haematologist/specialist. That is what I have been advised to do

[Harvist in reply to Walkingtall62]

I can only ever get through to my specialist's secretary. He takes days to get back

[Walkingtall62 in reply to Harvist]

Hi, that’s a shame. Have you been allocated a specialist nurse?

[mrsjsmith in reply to Walkingtall62]

I think sadly the advice varies. Mine told me to make sure I send the PCR test off promptly. I am sure it depends on whether the CMDU is based in their hospital or not. Mine isn’t.

Colette

[Nicebaps]

Hi Harvest

I to woke up on Monday not feeling very well. I did two LFTs which were positive followed by a PCR which I sent off that afternoon. To my surprise the result came back the following morning just after 8am and that was also positive.

Within two hours I received telephone call from the NHS COVID Clinical Assessment Team asking how I was. They then informed me that I needed treatment and that someone from my local hospital (Lincolnshire) would call me. Shortly afterwards I received another phone call from my local CMDU and they couldn't have been more helpful. That was day 2 and things were going to plan.

Day 4 and I was in hospital having the infusion. It would have been sooner but they were simply overwhelmed with newly diagnosed COVID positive patiants.

Today is day 6 and I'm still Positive but feel loads better than I was at the start. From my experiences, we have to take charge of our own condition and if needed, bang on a few doors until we're heard. Too often we get fobbed off by people who have very little knowledge of CLL and more often than not those people are in the medical world.

Where possible, we all need to be proactive in keeping ourselves safe. I for one have no complaints (yet) of my treatment so far.

Hope you get things sorted and you start to feel better.

[stevesmith1964]

My experience was completely different. I had my 3rd covid infection in Jan which was after the antiviral CmDU was setup. I have seemless communication twice a day from GPS, monitoring my status and on day 5 I concluded it didn't want antivirals as a I feeling OK. I was then passed to mu oncology team who continued the monitoring

[blowinginthewind]

I hope you get your call soon, and can access treatment for the covid. Those of us on here, and other online support groups know what we are entitled to. I cant help but feel sorry for people who have no real idea they are entitled to because their GPs haven't a clue, and the person hasn't had, or hasn't understood the letters.

Well done for fighting for your entitlement

Liz

[Harvist in reply to blowinginthewind]

Thanks. Totally agree

[Jacksc06]

Hoping that you get the treatment soon, and wishing you a full and rapid recovery. Beat wishes.

[lankisterguy Volunteer]

Hi Harvist,

-

Here is a list of the CMDUs and some have phone numbers, others just a email.

Don't be shy, get in there and get treatment ASAP - bang on the door if needed.

england.nhs.uk/coronavirus/...

-

Len

[Newdawn Administrator in reply to lankisterguy]

Len, the CMDU’s don’t work like that in the NHS. Each one is linked to a Health Trust under the auspices of the CCG (Clinical Commissioning Group) so we are contacted by the Trust in the area where we live. It’s helpful to know where they are but my experience is that the Unit wouldn’t let me ring them directly. I had to go through the switchboard and I’m pretty sure a CMDU out of my area would have given me short shrift. Sadly we can’t move between them based on availability. If anyone has managed it, I’d be really interested to know.

Just a reminder about eligibility for therapeutics;

This is the eligibility criteria for therapeutic treatments sent by NHS England;

Who might be eligible for the new treatments?

At the moment, from what we've seen in written guidance, we understand that the following people with blood cancer might be eligible for fast access to sotrovimab and molnupiravir. People who:

* had a stem cell transplant in the last 12 months - either allogeneic (donor) or autologous (using your own stem cells))

* have active graft vs host disease (GvHD) regardless of how long ago the transplant was

* had CAR-T therapy in the last 24 months

* had an anti-CD20 monoclonal antibody therapy in the last 12 months (eg rituximab, obinutuzumab, ofatumumab)

* have a chronic blood cancer that affects B cells (B lymphocytes) and have had treatment in the last 3 months (eg myeloma, CLL, hairy cell leukaemia, follicular lymphoma, SLL, marginal zone lymphomas, MALT lymphoma, Waldenström macroglobulinaemia)

* have a chronic blood cancer that affects B cells (B lymphocytes) and have hypogammaglobulinaemia (reduced antibody levels in the blood) or reduced peripheral B cell counts (reduced B cell levels in the blood)

* have acute leukaemias or aggressive lymphomas, and had their covid vaccines during chemotherapy or less then 3 months after finishing chemotherapy (eg ALL, Hodgkin lymphoma, diffuse large B-cell lymphoma, mantle cell lymphoma, Burkitt lymphoma)

* had an anti-CD38 monclonal antibody therapy in the last 6 months (eg daratumumab, isatuximab, pembrolizumab, nivolumab, blinatumomab)

* had a B cell maturation agent (BCMA) targeted therapy in the last 6 months (eg belantamab mafodotin)

* anyone else with a chronic B cell lymphoproliferative disorder not otherwise described above (eg myeloma, CLL, hairy cell leukaemia, follicular lymphoma, SLL, marginal zone lymphomas, MALT lymphoma, Waldenström macroglobulinaemia)

People with other conditions like other cancers, kidney disease, liver disease and other underlying conditions are also eligible. We have explained the breakdown for blood cancer above, but you can see the original list on this clinical document (see appendix 1, pages 7-9).

bloodcancer.org.uk/support-...

I believe the criteria I’ve highlighted bold applies to the Watch & Wait group of patients.

My advice to anyone would be persevere!

Newdawn

[Harvist in reply to Newdawn]

Definitely agree. Persevere!

[Harvist]

Today has been an exercise in the NHS working together (slowly).

Had results of my PCR (positive) at 6am by text.

Phone call at 9am from an administrator who took all my details and recommended me for treatment.

11am a call from a doctor who said they would be progressing treatment for me but as someone who took a lot of pills (!) they needed a pharmacist to decide on the best treatment. 1pm and the pharmacist called. Was worried that paxlovid at home might be a problem with my drug regime so needed to speak to a consultant.

At 2.30 she rang back to say I couldn't be treated at home and I need to go into a ward to have an infusion of sotrimovab.

So its 3pm and I am now waiting on a call from the hospital for an appointment there in a ward for 30 minute infusion. Told it will be today.

When it works the NHS is an inspiration. A lot of waiting around for calls but a promise of treatment.

Thanks for all the best wishes. Will report back on experience in the ward.

[mrsjsmith in reply to Harvist]

Sounds good to me that they are checking all your meds, and I hope you get the infusion quickly.

Colette

[Newdawn Administrator in reply to Harvist]

Good to hear Harvist!

I found it to be a very straightforward procedure. Infusion of Sotrovimab only took 30 mins in an empty ward on the Covid Unit of my local hospital. Strangely though, I’ve still got the bruise from the infusion site 3 months later. Just refuses to completely fade.

Newdawn

[Harvist in reply to Newdawn]

I bruise very easily so I am expecting some beauties!

[bennevisplace]

Thanks for sharing your experience Harvist and do keep us posted on developments. Hoping the Sotrovimab will work well for you.

[Harvist]

Had my infusion on Saturday. Sadly this event showing graphically the problems when government fails to fund the NHS properly. The ward I was in for the procedure was jam packed and to be honest in a state of disrepair. Didn't feel clean. I would have lodged a complaint with management but I am sure they would just blame the staff who were so overworked and stressed it felt like they were in a speeded up version of life, running around like cartoon characters.

5 hours of waiting, slight mishaps and more waiting.

But.

Treatment was done and I am now on 7th day of "symptoms". In speech marks because I don't feel really ill. I have a cold and I am coughing occasionally but not severely. None other of the classic covid symptoms. I am now in limbo. Still contagious but not sure if I have escaped the worst or waiting for new symptoms to arrive.

A clinician rang yesterday about another condition and I asked her lots of questions. In no way a specialist but she did have some opinions. She stated what I thought that the antibody treatment Sotrovimab mAb was a "second best" and that paxlovid was the current ideal. But she could offer no further advice about the progression of my covid, just contact medics if breathing becomes an issue. She also told me that in hospital blood tests done before the drip I showed no evidence of antibodies.

So "Sit and Wait" for covid goes alongside "Watch and Wait" for CLL.