Shielding

Hi Greg

Thanks for that information on shielding.  I think you're right that we will feel relieved but very cautious too!

As for dex. Well who would have thought it? Quite amazing really that something we are all so familiar with should turn out to be the first chjnk of light for seriously ill patients.

So we proceed with great care and hope for better times ahead.

Best wishes to all

Sue

Hello Greg.

Thank you for the link - I’d read about the date and had approached hubby with the news and he was so upset. He said “Well I’m going out anyway.” Bless him he then remembered that he can’t walk so much, can’t drive and indeed where is he going to go? He’s settled now and the family have suggested that maybe we could do a distanced visIt  to the four gardens we have in the family. Oh bless him. Our best friends have said they will be down here on 1st August with champagne! Everyone has been so supportive. 

As for the dexamethasone - what a discovery eh? 

We have our monthly meeting with the haematologist on Friday plus his infusion so that’s hopefully going to throw up some good news. On Monday it’s my birthday so we will have a little celebration then. Maybe I’ll finally get to open my Christmas champagne which I’ve been saving until his pp comes down. 

As always we send you good wishes.

June

Thank you Greg. That’s very interesting. I agree with you on the mixed emotions about the shielding. What has actually changed that means that it is now safe to drop it?  The cynic in me often wonders whether there is a financial driver to these decisions as well as the safety angle. 

It’s extraordinary about Dex turning out to be so effective. But have you also seen this trial for lenalidomide as a treatment for COVID-19!?

https://clinicaltrials.gov/ct2/show/NCT04361643

If that turned out to work too, it would be very weird!

R

Hi all 

An update from sunny Malta :)

Here in Malta a legal notice was issued around March stating vulnerable people and those over 65 years of age are to shield, remaining indoors. All those identified as vulnerable received a letter at home to request that they stay indoors. Around a week ago we've received a second letter stating that the legal notice has now been repealed so we can return back to work and outdoors. I agree with R that there is definitely an economic drive to this even in Malta. Hence the mixed emotions. I think it is important to find ways and means of staging our return to 'normality' in such a way that may not necessarily be as quick as the shielding measures being released but allowing our logic and intuition to play a part.   


My consultant however instructed that I still avoid public places, shops, restaurants, beaches etc since I am on maintenance chemo and last blood test in May showed a low white cell count which he associates with the Revlamid maintenance. He sent a note to my work place HR to request that I remain working from home as much as possible. So it was an initial moment of relief which was soon taken away again. My blood test last week showed a further drop in white/neutrophil count so we're doing another test this week. If its still too low I will take GCSF hormone to boost the bone marrow and then continue maintenance. Amidst all this however, it is  a relief to watch the rest of the world return to normality and it means there's a light at the end of the tunnel. My husband has returned to work too and I could see the relief in his face :) 




Two general updates:

1) I asked my consultant why is it that people who are in remission and not on maintenance, with suitable blood results must shield. He said that the immune system is an intricate system and therefore not all aspects of immunity can be tested via blood tests. He said the spleen plays an important role. This organ is very likely to have been effected by the bone marrow transplant process and we do not do any tests for it. For this reason people who have/had myeloma would require shieldling and proceed with caution.  

2) This Saturday evening there's a webcast with three myeloma experts who will give an update on the latest research which could be interesting to treatment of myeloma. You could post questions in advance of the session for them to be addressed during the webcast. If you're interested in attending you would need to register (name and email is all). This is the link: 

https://www.myelomacrowd.org/register-now-for-the-myeloma-crowd-s-june-20-eha-interactive-webcast/?fbclid=IwAR1iSQ8EHkfh8uzVicg_2N5yOa7uk0g2kPiYZbf7RLdXYRVI5aUFxYdeJlY


Take care 

Rachel

Hi everyone,

It seems that the press are backtracking a little this morning, so I may have jumped the gun about the relaxing of shielding, but I’m sure we’ll hear something for definite in the coming days.

Sue - I almost fell off my chair when I heard dexamethasone. To hear a drug that we’ve all known for a while to suddenly become some widely known was quite surreal. To hear leading politicians and news commentators struggling to pronounce it was quite funny - I suddenly felt like a medical expert comparatively speaking! It’s really great that they’ve found it works well for COVID-19. It gives me confidence as a myeloma patient as well, although I’m slightly worried and hoping it doesn’t cause a run on the drug, but hopefully not.

June - I’m really feeling for your husband. I have these mixed thoughts in my mind - I really want shielding to end because I want to feel “normal” again, but then I check myself to say I’m not really “normal” because I still have myeloma. I had always struggled with the tense of whether I “had” or “have” myeloma, and this whole situation has confirmed to me that whilst I’m lucky it is not active, it is unfortunately definitely still a “have” (at least in the minds of the medical professionals). I think it’s psychologically important though for the government to give shielding people hope that they can have a reasonable future, even if this virus is still around, so I’m hoping we get that hope in the announcements this week. I’m also really hoping that things go well for your husband on Friday and that you have a great birthday on Monday! The champagne also sounds like a fantastic idea!

R - I don’t doubt that there is an economic angle to this. 1m shielding people are of working age, which is about 3%. Whilst not a big %, nevertheless automatically that means the economy can’t get back to 100% of what it was before. On top of that, those shielding people often live with others who might shield with them and I think the fact that shielding exists makes those only “vulnerable” instead of “extremely vulnerable” also nervous about the virus and as such adapt their behaviours. So it wouldn’t surprise me if the shielding programme is having at least a 10% impact on the economy, and that means several million unemployed, so it’s an incredibly difficult situation all round. I will very much be interested in what Myeloma UK has to say about it, and it’s also very interesting that lenalidomide also seems to work. I’m not clever enough, but I am beginning to wonder if this virus will shed some light on how myeloma works as well? I’m certainly hoping it will.

Rachel - it’s very interesting to read about the impact on the spleen. I had not considered that at all, but it does make sense. I have my next catch up in early July, so I’ll definitely be asking my consultant about what risk he sees me at and why. Thanks for the linking to the myelomacrowd webcast - I remain very hopeful that we’re going to find something soon which means we can start talking about “cure” in myeloma. I’m also very thankful I got in now rather than 20 years ago as so much as moved on and hopefully will continue to do so. I’m sorry to read about your neutrophils. Shielding in that context makes a lot of sense as you’ll be more open to infections. I’ve had the G-CSF injections quite a few times. Whilst they can cause some bone pain, they’ve always done the trick for me in causing a surge in white blood cells, so I’m really hoping you’ll find the same.

All the best everyone,

Greg

Hi Greg,

Thanks for the post, hope you are keeping well. 

Yes I too finished the 84 days we were initially told to shield a bit of an anti climax as things didn't feel any different on day 85 knowing it was extended until at least the end of June.

Who would have thought Dex would be the new hope for combatting Covid. Given that it has been around for decades and is relatively cheap to produce hopefully it will be widely used and will make a difference globally, whilst sill being available for its current uses.

Like yourself I would like more freedoms (the once a day walk has made a positive difference), but we need to understand the science and rationale behind decision making to get our confidence back. 

Matt Hancock has just said there will be an announcement very soon. I am sure all will be explained clearly!

Take care

Rob

Hi everyone,

Hope you are all doing well. Today I had my first check-up with my consultant since the COVID-19 restrictions and I found it to be a very interesting discussion. As I suspected and hoped, they were pragmatic about the current situation and how best to proceed going forward. They said that the risk at the moment is low, but that’s not to say it has gone away - it was likened to that period about 3 months post transplant. The most dangerous period is past but I should continue to be careful where I go and the situations that I get into. I was told that the acute phase of myeloma is considered the most troublesome period as that is when the problems with the plasma cells are at the greatest. Once you’ve started treatment and the myeloma cells are reducing, things seem to be better. But unfortunately the risk is higher for us having myeloma full stop as it was confirmed by my consultant that myeloma is considered to be just about the worst cancer to have from a Covid-19 perspective. This is because there is uncertainty about how the plasma cells and the resulting antibodies will react to the virus. That was caveated by the fact that they are still learning so much on a daily basis and so their understanding may change in the future.

So I suppose the overriding message I got was, things are better now so be happy to be able to do more things, but please be aware that the virus is still there and don’t put yourself into any unnecessarily risky situations. Masks in public places are a good idea, gloves a bit more tricky as you have to be absolutely certain that you won’t touch your face. Avoid crowded places if you can. But now we’re in the summer months, try to safely get out and about a bit more, especially as there are worries that things might get bad again when winter arrives. From a work point of view, I can go back if the appropriate safety measures are in place and if I absolutely can’t work from home but challenge the employer to detail exactly why you can’t do the job from home.

Whilst I would much prefer that myeloma wasn’t quite as risky from a Covid-19 point of view, I appreciated the common sense messages that I got. I found them much better than the government guidelines which my consultant was very open in saying they don’t get to hear about until they read the news anyway. I read into this that if they had the chance, they wouldn’t have quite been written the way they were written.

Hope everyone is doing ok.

Greg

Hello again Greg

Thank you for your update and the common sense messages from your specialist. I feel sure that the government guidelines have caused more stress than necessary at times. 

We are seeing hubby’s specialist tomorrow for his monthly check up then back again for his infusion on Friday. Hubby’s newly appointed hospice Doctor has been in touch today to say hello and will phone again on Friday when I hope hubby is awake  for his call.

I have been trying to raise some interest from hubby about what he’d like to do when lockdown finally ends but I feel  he’s lost all interest in going out now. Hopefully the national trust will open their local site soon then I can get him out into the wide open spaces they offer near to home. 

Greg I’m so glad you are doing well and as always send you our best wishes especially now you can see an end to the shielding period.

Keep us posted

June and Gordon 

Hi June and Gordon,

I hope that everything went ok at the hospital today and that the infusion goes well on Friday as well. I think in some ways that coming out of lockdown might be harder than going in. I am finding it quite daunting, but I’m hoping that you’ll find that as you make more steps out, you’ll want to do more and get slowly back to a more normal way of living. That’s certainly what I’m hoping. I really love the National Trust properties, I find them nice relaxing places to look around, so here’s hoping they’ll open soon.

Best wishes to you both

Greg

Hi Greg

So the news was confirmed that the para proteins have started to come down and everything is going a swell as it can. This is the last of six rounds of CDT and after six it stops. Current guidelines according to the haematologist won’t allow a low maintenance dose but in light of Covid it is hopefully going to become a possibility. If not it’s back to no treatment and yet again watching and waiting, three steps forward and two back.

Still we must be grateful for what we have now and hopefully Nostell Priory will be fully open soon and we’ll be down there with a picnic to enjoy the space.   

As always best wishes

June and Gordon