I feel a fraud having no symptoms of CMML

[chris]

Hi Graham

Lovely to hear from you. My goodness, you are adding a wide range of conditions to your “portfolio” as you call it. There is also a condition called Essential Thrombocytopenia, low platelets!! Again, don’t understand the use of the word Essential in that context? Makes it sound as though we should all have it which is definitely not what we’d want!! I hope the tremor doesn’t give you too much discomfort or limits what you can do?

Also hope the fuel crisis doesn’t lead to you having to stint on heating as that won’t help your chilblains this winter!! What sort of medication is it? Presumably something to improve circulation? I’m also very cautious about medications so I understand why you will soldier on without it!!

Because of the drought down here in the South East, we had absolutely no rain in July and hardly anything in August. We were watering in scorching temperatures but have had a poor year for some normally very reliable crops such as courgettes, sweetcorn and French Beans that got hammered by blackfly! Good year for tomatoes though. The lack of wet meant no blight!! You win some, you lose some!!

Thank you again for your kind words. I was quite nervous about facilitating the stem cell session but Dr Potter was a superb speaker and Michelle Kenyon very kind and reassuring so it all went well. It’s on our website and our You Tube channel if you are interested. Glad to hear Bronwen is on Facebook group and hope all is well with her husband? I’m still staying off Facebook as my phone would be pinging all the time!!

I’m waiting to hear about my 6th jab (did you miss one?!). I’d better get on to my GP who has done all the others with no problem. Let me know if you get the new bivalent one.

Take care

Chris

PS Yorkshire and midlands group meeting on Tuesday if you’re interested? Though everything is really nationwide now -just hosted by different Local Support Ambassadors!

[Graham]

Hi Chris and all others. Got vaccinated this morning they did my missus her being my carer. The vaccine I got was named spikevax now whether thats bivolent as you mentioned I am not sure but hoping you can tell me. I suspect its for covid 19 and the new variant Omicron.

Chilblain treatment not explained said he was going to write to GP but hasn't so far,

I would really like to be at the meeting tomorrow but I have a builder coming to renovate my daughters house she has just bought so I need to be there. Never got an notication it was happening by the way. I missed a national CMML one the other month by leukaemia Care could get in for reason unknown by me and them.

Envious about you about you having 5 jabs already

[BCEX14]

Hi Chris and Graham
Sorry have not been on this group for a while, have been soo busy!! Incidentally, I'm not on the CMML facebook group, I can't stand Facebook!
My husband Chris and I decided we would move house last November. We were living in a small village in the Blackdown Hills and had a huge garden which was starting to over whelm us, particularly as chris gets quite fatigued these days. Also it was a 12 mile round trip to the nearest shop, and no bus link, so we decided to downsize to a bungalow with a much smaller garden. With a view to it being our final move. We realised the bungalow needed a lot of work, namely central heating, windows, new kitchen but its turned out we've had to spend far more than we anticipated. But nearly all done now, and we are happy in our new home. We have not only a shop but also a bus and a train link, and clossr to our family in Exeter.
Chris had a bad spell earlier this year, he thought he'd just been over doing it here with all the DIY, but it turned out he had a pleural effusion and an empyema. Treated him with antibiotics but was told he'd need an operation to remove the fluid which involved breaking his ribs. Luckily the antibiotics did a good enough job in reducing the fluid so in the end the op wasnt necessary thank goodness but he had to have nearly 4 and a half months off work.
This week he said he could feel the symptoms returning, as getting the familiar pain around his spleen and left shoulder, so GP has prescribed antibiotics and will refer him for another x ray.
We dont know if this pleural effusion is connected with the CMML, even Dr Sally Killick wasnt sure last time. We suspect it is.
Other than that, he remains on watch and wait and bloods have remained stable.
We were gutted to learn that Sally Killick is retiring this month. She has been an absolute godsend to us, and a fountain of knowledge. We really felt we were in safe hands under her care. So now we are wholly under the care of our local hospital in Exeter, and so far the experience hasn't been great.
Anyway, it was lovely to hear both your news
Best wishes, Bronwen

[chris]

Hi Graham and Bronwen -how lovely to hear from you again!

Firstly -Graham. Glad you got your vaccine done and, yes, I think Spikevax is the new one which covers the Omicron variant. Here’s a link about it.
https://www.england.nhs.uk/coronavirus/ ... -v1.01.pdf
I only managed 5 jabs because of being involved with this group and knowing that I should have had 3 primary doses and 2 boosters!! Last one was April so I definitely want the Autumn one before the Covid numbers start going up again as they surely will!!

I’m sorry you are on Dad duties tomorrow but also concerned that you hadn’t received any notification of the meeting? Presume you get the MDS monthly e-newsletter by email as it was in the September one? And there was a reminder email today? Have you checked your junk/spam folders? If you haven’t had it, can you Private message me on this forum and give me your current email address so I can get it checked for you? Or you could email yourself to check you’re on the list? admin1@mdspatientsupport.org.uk I also missed the Leukaemia Care CMML meeting. Surprising I didn’t know as they email me almost daily asking for donations?!

Bronwen. No wonder you’ve not time to post! House move AND major refurbishment must have taken all your time. And Chris’s illness too! You’ve had a lot to cope with. If you read my posts on how my CMML kicked off, you’ll see that I suffered with bilateral pleural effusions too! It is most definitely a feature of CMML so I’m really surprised that Sally didn’t make the link? Mind you, I saw a local haematologist and 2 professors who also didn’t know until I found the research and sent it to them !!There’s plenty of mentions of the link between CMML and pleural effusions if you Google it a bit!! Plus the left shoulder pain is linked to enlargement of the spleen so has Chris had that checked out recently?The pleural effusion is not an infection but is caused by something called Leukaemic infiltration and can affect the lungs and the heart so I’d get him to raise all this with his haematologist to confirm whether antibiotics are needed if not an infection? My own effusion -they managed to drain off a small amount with a needle through my ribs but the rest dispersed gradually over a period of months. Incidentally CMML not even diagnosed at the time! Very frightening though as I was so breathless I could hardly speak with the effort of getting some air into what remained of my lungs!!

Goodness!! I didn’t know Sally was retiring!! That is a huge loss. She’s been so helpful as chair of UK MDS Forum and a great supporter of MDS UK.

Are you still working with Marie Curie? How is that going now?

Take care both.

Chris

[chris]

Hi Bronwen

I also remembered pleural effusion mentioned on the Leukaemia Care website. Look under signs and symptoms!

https://www.leukaemiacare.org.uk/suppor ... leukaemia/

Best wishes

Chris

[BCEX14]

Morning Chris
Thanks so much for that info, really helpful, and to know that you have suffered similar?
I feel I must defend Sally in that she did tell us that an effusion can be a symptom of CMML, however she said she had never had a patient presenting with an empyema,. We are certain ourselves that this developed because our local hospital did not act swiftly enough by draining it in the early stages. We were herded here there and everywhere, involving lengthy waits in every department, and the same old cry from everyone "I've never heard of CMML, can you tell us about it?" !!! In the end, in desperation, we contacted Sally ( who we travel to see every 6 months) and she phoned our hospital and basically put a rocket up their backsides to get him properly looked at. Someone remarked " your consultant sounds a very fierce woman!" and we said no she's actually not, but she's very, very thorough and knows her stuff!!
Because the fluid had developed into an empyema they were then unable to drain it in the conventional way, which is why we then had to meet a surgeon at Derriford Hospital who was going to cut Chris's ribs open to get the pus out. We went down for the pre-OP but by this time, after 4 weeks on the antibiotics, he was feeling much better and it was Sally once again who advised us to ask for another chest x Ray as she was surprised he felt so well... and lo and behold this revealed the fluid had nearly gone, so the op was cancelled!!
Yesterday the GP finally rang us at 6.30 PM and asked "have you got a high temp?" - no, but he didnt have one last time either. " have you got shortness of breath?" - a little, but as before, it wasnt the chief symptom. Main thing being the pain in chest, spleen area and left shoulder. Explained about the CMML (AGAIN!). Re-iterated that we dont want delays again and it possibly developing into another empyema. GP eventually said he'll prescribe antibiotics , request chest x Ray and see him in person tomorrow.
We feel once again we'll have to fight our own corner with Sally gone. Although Tom Coates is now at our local hospital and was doing "shared care" with Sally, so far it has been Sally who has been the pro-active one.
I'm amazed you dont know about Sally retiring. It really is a huge blow for us. When we had our final consultation with her a few weeks back she actually hugged both of us as we were leaving! How many consultants would do that?!
Any way, I hope you stay well, and thanks again for the useful info
Warm regards
Bronwen

[chris]

Hi Bronwen
Hope you and Chris can get this sorted very soon. No doubt the chest X-ray will reveal all. I didn't ever have a temperature or any of the usual signs of infection either - because it wasn't an infection! In fact, the first question the Chest doctor at hospital asked me was "do you smoke" and I thought "Crikey - they think I have lung cancer" and, as my Dad had died of this (through smoking I hasten to add!), it was very scary as I never have smoked but I knew that isn't always a guarantee. They took a little sample of the fluid from my lung for analysis and the doctor was kind enough to say that because of the colour of it, it was unlikely to be a malignancy in the lung! Sigh of relief! Though clearly nobody ever linked it with CMML which was not diagnosed until a year later - despite having had a bone marrow biopsy! Another blood test I had was for C Reactive protein. It shows up inflammation in the body and is also a very good test for determining if somebody has either a viral or bacterial infection and that reading would therefore indicate whether or not antibiotics are needed? With a bacterial infection the CRP is quite high; with a viral infection, there is a lower range but above normal. Might be worth asking to GP to do this test too?

Sally clearly saved Chris from a rather "heroic" operation which would have taken him a long time to recover from! Maybe Sally will know but I have read in some research papers that steroid treatment can help with pleural effusion? In my case, the drainage was not very successful and there are lots of risks such as puncturing the lung ( ) and, in the event, it all just gradually cleared itself. Fortunately, I did not get empyema! Our "go to" expert in CMML is Dan Wiseman at Manchester Christie hospital. If Sally is going, maybe you could get shared care (remotely of course?!) with him as a CMML specialist? I'm sure Tom would understand and support this additional source of expertise.

I'm now wondering if I had known about Sally going - though I think something so significant would have lodged quite securely in my increasingly full-up brain!!

Let us know how things proceed for Chris.

Bests

Chris

[Graham]

Hi Every one, Writing this quickly before National CMML zoom by Lukaemia Care at 2pm today. Latest blood results show decline in Hemoglobin Level for third time running. Resulting in needing deeper look at more blood tests and possible bone marrow test . Have suddenly been feeling very tired and breathless more often, not sure if this is blood or lung problem and to cap it all have developed chest infection so not as good as I have been. Hope to see you on zoom soon.

[chris]

Hi Graham

Good to see you at the meeting this afternoon. But sorry to hear your Hb level is dropping a bit. Hope that you can get more information on this following further tests -though I don’t envy you a bone marrow biopsy! Ouch! But it has to be done to get a fuller picture I guess!

Don’t suppose you know if your chest infection is bacterial or viral (GPs seem to hand out antibiotics quite readily anyway!) but I hope that it soon clears up. That won’t help your breathlessness either!

Glad to hear you’ve got your garlic planted. We’ve weeded, manured/composted and covered most of our plots. Just have some broad beans to put in. It’s last chance saloon for them as last 3 years they have been completely destroyed by blackfly so I’m trying a different variety that somebody else said was not too badly affected!! I’ve also given up on growing garlic as it seems to affect my IBS!

Great year for tomatoes this year and all the soft fruit so we’re pretty happy overall! What shall we do with ourselves in the winter?!

Take care. Hope you’re feeling better soon

Chris

[Graham]

Hi Chris, Bronwen and fellow sufferers and carers, Have had a few events since last post. Last few blood tests have seen monocytes and platelets normal range but Haemoglobin, RBC and Haematocrit are now out of range and the last result monocytes and platelets dropped again out of range so have 7 elements not normal, which has prompted a bone marrow biopsy this thursday morning. Also beginning of December in the early hours I started vomiting large quantity of whats referred to as coffee grounds mixture of blood and vomit. Was ambulanced to hospital where I was admitted. After several tests which were negative was diagnosed with Gastro Enteritis and no areas found to be leaking blood 8 days later I was discharged feeling better than when I went in plus I had lost a stone and half in weight. I seem to have recovered from that experience. However I feel very tired at times and breathless This was a concern for the haemotologist at St James after a special series of blood test came up with I was anemic so now on folic acid tablets and things seem easier. Good news is my Respiratory Consultant at York is now communicating with the the haemotologist at St James both concerned about my breathlessness. On a lighter note I managed to get into the allotment yesterday only tidying up and formulating in my head what and where I am going to do thing. I have noticed I need to reduce bending down and to slow down in order to preserve what energy I have. It was disappointing to look outside see bright and sunny weather but freezing temperatures when you went out so I have just remained in the house.
Looking forward to online seminar with Leukaemia care on the 27/2 and what docotor Wiseman has got to say. Hope to see you then . Graham