Thanks for sharing your story. It sounds good that all your blood counts are in the normal range at present and your monocytes only just over 1. Mine have been hovering just over and just under 1 for 17 years but I have low platelets (60-ish) and low white cells, including neutrophils between 0.5 and 0.8.
Where you are living sounds idyllic and must surely help with your amazing approach to your new, but unwelcome, “friend” of Chronic myelomonocytic leukaemia (CMML). Glad to hear the Spanish healthcare system is looking after you so well. I’m very grateful that we have our NHS. It is struggling, as are many of our public services, but we all hope for improvements.
Hi @ChrissyD The zoom meeting yesterday was very good, and gives us all hope of better treatment if and as we may need it. The itching remark Dan wiseman made was interesting to me as I have suffered this for the last few years, feels like it’s become part of me. Have a good weekend.
So sorry to hear you suffer with itching too. Must be maddening! Can you get relief from it with topical creams/special soaps? I vaguely thought that itching might be linked to liver issues too so maybe when you can find out more about that and get a treatment plan, the itching might ease? But from what Dan said, itching is quite common in Chronic myelomonocytic leukaemia (CMML). Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) seems to have its fingers in a lot of pies! I was tempted to ask if it was linked to IBS but I don’t think so somehow as I’d had Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) for over 9 years before the IBS symptoms appeared.
Have a good weekend yourself though I think it’s batten down the hatches for a storm Claudia!
@ChrissyD@Lyndam Sorry to hear you’ve been suffering from itching @lyndam, must be horrible My husband suffered from a bout of bad itching for a week, last month. We’re waiting for an up to date blood test next week to check his liver function, so not sure if it’s linked to that? And interestingly IBS & diverticular were both issues we chatted with Dan Wiseman when we spoke to him in September. He didn’t seem to think they were directly linked to Chronic myelomonocytic leukaemia (CMML), but as we know Chronic myelomonocytic leukaemia (CMML) seems to be so varied in its symptoms. Wishing you both a good weekend
Hi @ChrissyD@Sisi thank you for your kind words. I have had itching skin for 3 + years. My haematologist does not think it is related to Chronic myelomonocytic leukaemia (CMML), but after Dan Wiseman’s talk on Thursday it would appear not to be the case. As much as it is annoying it has become apart of me, and I just accept it. It is my head that itches the worst. I use pears soap as it’s gentle on the skin as I have other autoimmune skin conditions. Drs just dismiss the itching. I also read on dr google that itching can be a symptom of liver problems, but looks like I just have a fatty liver. Take care
Hi @Lyndam Itchy head sounds horrible for you It’s certainly tricky at times isn’t it, as to whether these conditions are because of (Chronic myelomonocytic leukaemia (CMML)) or not? I hope you’re having a nice Sunday. Best wishes
Hi everyone, hubby and I loved the meeting. He was even taking notes! However, as his handwriting is seriously dodgy, can anyone point me in the right direction for the transcript of the meeting that Dr. Dan mentioned? Thanks x
Glad you and your husband found the meeting useful. Nick York who hosts the meeting will send out an email in a while to all those who registered. He does a great job of summarising what was discussed and adding links to sources of support and information. I’m sure it will be sent out soon but he’s a very busy man with all the meetings he sets up and hosts.
Good morning all, I to have itchy skin started about 10 days ago. Trying hard not to scratch.
No rash etc. just random itching.Scalp in particular and random other places. Seems to disappear when I go to sleep. I read that anaemia can cause itchy skin as can blood cancer (I think that was on mayo clinic website) I have noticed over the years I get a similar effect when I am on the verge of a cold. These days I don’t seem to catch a cold.
My monocytes level doubled in September perhaps that can effect itchy skin.? I actually feel very well. But I wish the itching would stop. Wishing you all relief from this annoying problem. I have tried E45 itch cream and anti histamine cream and they have been reasonably effective.
So sorry to hear about your itchy skin. Maybe the increase in monocytes is the cause? Ask your haematologist? Hope you can find some treatments that can relieve it. Some good tips from others on here already.
Hi @Unclejack. Sorry to hear you are now suffering the itch. I have been like this for the past 3+years and it has now become a part of me. Like you my head is the worst. Hope this goes away for you as quickly as it has appeared. Take care
@Lyndam@ChrissyD@Logsie@Unclejack@CathyP And sorry if I’ve missed anyone off! Hope everyone is doing ok & not too cold! Little update on my husband. He had another blood test to check his liver function a few days ago & his ALP & GGT enzymes are very high. GP doesn’t think it’s because of his increased statin dose from June & has referred him for an ultrasound in the next two weeks. She said it could be to do with bile flow or gallstones. Fortunately he’s feeling ok She also recommended he reduces his statin whilst we find out what’s going on. I thought of you @Lyndam as I remember you saying it was your GGT that was too high. Take care everyone & happy nearly weekend
Good that this is being monitored and his statin dose reduced, though surprised that GP doesn’t think the statins cause this?
AI overview shows this:
statins can cause an increase in liver enzymes, including Alkaline Phosphatase (ALP) and Gamma-Glutamyl Transferase (GGT), although it is uncommon. These elevations are often mild, asymptomatic, and can resolve on their own even with continued statin use, or with a dose reduction.
It seems to me that there’s always a risk/benefit aspect to virtually every medication!
Very cold here in South East but shouldn’t complain, seeing snowfalls up North.
Hi @Sisi sorry to hear your husband is have in problems with liver blood tests. Yes you are right my GGT was high, but mine was not due to statins as I have only ever taken a very small 10mg dose. That has been enough to keep my cholesterol down. I think my high reading is either fatty liver disease or when I was ill at the beginning of the year. My readings have gradually come down, still not right, but the haematologist seems happy with it. Have a good weekend.
@Lyndam Thank you. Glad to hear your readings have come down & your haematologist is happy My husbands haematologist hadn’t even flagged it up. I had to point it out to him! Happy weekend to you
@ChrissyD Hi Thanks yes, we’ve seen 2 GP’s & both think it’s not the statins but it IS interesting his dose was doubled in June & also ofcourse he’s on antiplatelets now too So I guess we’ll see. They’ve both said that the those two high liver enzymes aren’t the usual pattern if it’s statins related. And it’s pointing more to bile flow? Hopefully all will become clearer once he’s had the ultrasound Another department to visit! We’re certainly doing the rounds!
@Sisi oh it’s one thing after another! I’m beginning to realise this the older I get! Hope the ultrasound happens soon and you can get answers on this. Warm wishes to all x
Hope you don’t mind me adding this to this thread but our media relations team is looking to speak with someone living with Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) or Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))/ Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) overlap to help us out with a piece of communications. If you’re able to help with this, please could you get in touch with press@bloodcancer.org.uk before Wednesday evening and our media relations manager will be in touch.
Must be maddening! Can you get relief from it with topical creams/special soaps? I vaguely thought that itching might be linked to liver issues too so maybe when you can find out more about that and get a treatment plan, the itching might ease? But from what Dan said, itching is quite common in Chronic myelomonocytic leukaemia (CMML). Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) seems to have its fingers in a lot of pies! I was tempted to ask if it was linked to IBS but I don’t think so somehow as I’d had Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) for over 9 years before the IBS symptoms appeared. 
My husband suffered from a bout of bad itching for a week, last month. We’re waiting for an up to date blood test next week to check his liver function, so not sure if it’s linked to that? 
And interestingly IBS & diverticular were both issues we chatted with Dan Wiseman when we spoke to him in September. He didn’t seem to think they were directly linked to Chronic myelomonocytic leukaemia (CMML), but as we know Chronic myelomonocytic leukaemia (CMML) seems to be so varied in its symptoms. Wishing you both a good weekend 
Hope it eases soon. Best wishes 
Little update on my husband. He had another blood test to check his liver function a few days ago & his ALP & GGT enzymes are very high. GP doesn’t think it’s because of his increased statin dose from June & has referred him for an ultrasound in the next two weeks. She said it could be to do with bile flow or gallstones. Fortunately he’s feeling ok 
She also recommended he reduces his statin whilst we find out what’s going on. I thought of you 
My husbands haematologist hadn’t even flagged it up. I had to point it out to him! 
Happy weekend to you 
