Brother in Law has CMML

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Annjeo
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Brother in Law has CMML

Post by Annjeo » 25 Feb 2012 14:08

Hello all, I am new to this forum, but having read some of the existing postings here it has given me the courage to ask some questions in the hope that someone may have an answer, if only a vague one.

My Brother-in-law (BiL) is 78 years old and was diagnosed with CMML approx 2 years ago. In that time other than having been to the hospital for regular blood tests he was told his CMML was dormant. However about 4 mths ago this changed and his platelets began dropping; last count they were 25. Although my sister has asked what all this means to him and what he should expect going forward the doctors haven't been very forthcoming, only to tell him that they "cannot give him a good prognosis" and "call us if he cannot stop bleeding so that we can give him platelets".

They won't treat him with any drugs or other transfusions as far as we are aware, as he also has COPD & Alzheimer's and so cannot tell them if he feels ill or not (he always says he is "OK" to any question a doctor asks him). No doubt his age is a big factor in this also.

The reason I write is that my sister is obviously worried for him and doesn't know what to expect in terms of symptoms etc. He has blood spots/ulcers in his mouth and is losing weight, but otherwise he seems OK. His appetite is very good and he doesn't appear to have any swelling of the spleen, which I have read can be another result of this disease.

Is it simply that we need to avoid any infections and bleeding, or will there be other things that occur as time goes on? Any info or advice on what I know is a relatively rare condition would be gratefully received.

many thanks
Brother-in-law (79 yrs) had CMML but now transformed into AML. Diagnosed CMML Jan 2010 dormant until Nov 2011, AML confirmed Apr 2012. Passed away on 26th May 2012
janetstanford
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Re: Brother in Law has CMML

Post by janetstanford » 25 Feb 2012 18:29

Hello Annjeo

welcome to the forum i am sorry to hear of your brother in laws issues and yes your sister will be stressed
CMML i do not know a lot about this but i do know a couple of very nice women who do
one is SOPHIE i suggest a message or a phone call she will be happy to help :) and the other is Chris i know she will be able to help also maybe a private message or a post it may take a few days but she will responed :)

good luck in your search and best wishes to your brother in law may hear from you soon
Janet :)
chris
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Re: Brother in Law has CMML

Post by chris » 27 Feb 2012 16:30

Dear Ann (?)

Thanks, Janet, for your support to Ann and for saying I am a nice woman!!!! I could be in the RAC!!

How strange. I received a google alert and saw your post re your B-i-l on the Lymphoma and Leukaemia website. I registered and attempted a reply but the system would not send me a password so, after several attempts, I am afraid I gave up!!!

Anyway, the suggestion I was going to make was that you came onto this MDS forum as it is more the "home" of CMML than the Leukaemia site - though clearly there are links! So it's great to see your post here. Welcome.

I have CMML which is fortunately stable at the moment but I do know that when it "kicks off" it can be very rapid and difficult to treat. Sophie Wintrich is the patient liaison person for MDS UK and has a lot of printed information she can send you/your sister and is a great source of all sorts of information regarding MDS. Contact details elsewhere on the site. There is not a great deal on CMML as it is one of the rarer sub-types of MDS and is in fact also what is termed a myeloproliferative disease i.e. MDS/MPD!!! (Lots of intials in this business!). This Forum is full of patients' experiences and you should be able to search for CMML and see some posts with patient comments and experiences. Your BIL's medical advisers are the only ones with all the facts about his condition so what is written on the Forum is only based on our own experiences.

It must be very difficult for your sister- especially as communication with her husband is limited - he can't necessarily elaborate on exactly how he feels. His blood counts will give a fair indication of the seriousness of his condition so your sister should ask for them at each visit and then she can keep track of what is happening. You mentioned he has low platelets and indeed 25 is quite low so, yes, he needs to avoid injuries which would cause bruising and bleeding and if your sister notices any bruises /little red marks under the skin,he should see a doctor urgently as he may need to have a platelet transfusion. Also, if he has any minor surgery or dental treatment, she will need to alert them to this so that the necessary precautions can be taken.

CMML may also lead to anaemia which may make him fatigued and/or low white neutrophils (neutropenia) which can make him more vulnerable to serious infections (and mouth ulcers!). So, to protect himself , he should avoid close contact with anybody who has an obvious infection - even if it is mild for that person! How vulnerable will depend to a great extent on how low his neutrophils are so again, your sister needs this info. By the same token, CMML is defined by having a high monocyte count (over 1) and possibly a very high overall white cell count. Your brother-in-law's doctors should be able to explain what theses counts mean. Failing that, is there a clinical nurse specialist at the hospital who can explain this to your sister?

It may be that some potential treatments for CMML are ruled out because of your BIL's co-existing conditions but age alone should not be one of these factors so your sister might need to think about discussing all the treatment options and, if she is not satisfied, might she consider referral to a Centre of Excellence for MDS? There are lots of issues to consider but until your sister has all the information, she will probably be feeling very unsure as to how best she can help and support her husband.

I hope this has helped a bit and please ask your sister to PM (private message me if she would like to.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
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Re: Brother in Law has CMML

Post by janetstanford » 27 Feb 2012 16:48

Chris
By RAC i take it you mean Help :) what i wonder is why not the AA :lol: and you have helped again and i guess thats what we are here to do .... :)

Take care Janet
chris
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Re: Brother in Law has CMML

Post by chris » 27 Feb 2012 20:09

Hi Janet

I stand corrected! Yes - well-spotted - it was an advert for the AA about "knowing a very, very nice man" - but I was along the right lines!! Memory not what it was!

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Annjeo
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Re: Brother in Law has CMML

Post by Annjeo » 27 Feb 2012 22:56

Chris,

Thank you so much for writing back to me on this. I posted on Macmillan website while Sophie tried to get me registered here, just to see what i could find out there, but this site seems so much more informative hence my posting here as well. Having said that the 2 responses I did get there were helpful if not as detailed as your's.

Oh and my name is actually Joanne, Annjeo is an anagram that I've got used to using elsewhere online.

Thanks so much for all you have covered above. They have another appointment with the hospital on Thurs this week so we should be able to ask more pertinent questions this time.

You mentioned the following;
chris wrote:(?)
CMML is defined by having a high monocyte count (over 1) and possibly a very high overall white cell count. Your brother-in-law's doctors should be able to explain what theses counts mean.
Just for info his last blood tests results were (they do send her written confirmation each time)

HB - 10.5, WBC - 8.6, Platelets - 28 (misread this for 25 in my earlier post), Neutrophils - 0.26, Monocytes (They last reported this result a year ago) - 2.4

Again thank you for your advice and I do wish you continued 'stability' with your CMML. I am constantly amazed at how incredibly brave and caring for others you all are despite your own problems.

Take care and kind regards

Joanne
Brother-in-law (79 yrs) had CMML but now transformed into AML. Diagnosed CMML Jan 2010 dormant until Nov 2011, AML confirmed Apr 2012. Passed away on 26th May 2012
chris
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Re: Brother in Law has CMML

Post by chris » 28 Feb 2012 18:19

Hi Joanne

Sorry -it was the Macmillan site I meant and amazingly my password came through finally today and have managed to get logged on there. Did a brief reply to you there in case you didn't come back on this site so please check it out as I added some info re mouth ulcers!!

It's good that there is another appointment this week and hopefully your sister will have a list of relevant questions! Even if the monocytes were only reported a year ago, I'm sure that that info would have been available with the tests that were done 4 months ago which has led them to say that the CMML has worsened. It is something your sister should ask about. I wondered also if your bil had had a bone marrow biopsy as that gives confirmation of what has changed. Mind you, it isn't very pleasant procedure and if he could be distressed by it, it's probably not worth it.

Weight loss is common and I think caused by the metabolism being speeded up. It's good that he still has appetite so it might be worth making sure he has calorie-rich foods. Maybe speak to a dietician about it. Also there are foods which should be avoided -shellfish, undercooked eggs,soft raw cheeses, fresh fruit and a whole range of other things! Again, speak to dietician about a"clean" diet. The other thing to watch out for with such a low neutrophil count is regarding bacterial/fungal infections which he will not have sufficient white cells to fight. If he should get a sustained high temperature, he might be getting a neutropenic fever which needs to be treated immediately with appropriate antibiotics - usually in hospital so your sister should ask what to do in that eventuality. I have been given direct phone no of local hospital ward and advised to call and go straight in, not pass Go etc etc!!

Let us know how he/you get on on Thursday and I hope you all get what you need from the consultation.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Annjeo
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Re: Brother in Law has CMML

Post by Annjeo » 06 Mar 2012 00:19

Hi Chris, yet again many thanks for all the info. I have read your post on the Macmillan site and am interested in your experience of the Chlorhexidine mouthwash. My sister did buy some, but was concerned when she read the instructions as it can cause damage to gums etc. in its own right. As a consequence she only gives him a diluted solution and then only once a day. However, I will pass on your comments.

Their visit to the hospital was a much better experience for them this time around as thanks to all the advice we've received my sister could ask more pertinent questions. His blood tests this time around are stable from the time before so at least there is no worsening of his condition. She has contacts within the clinic now and if outside hours the Ward, so if she has any concerns about his condition help is now only a phone call away. He hasn't had a bone marrow biopsy, they have only ever taken blood for testing, and it's highly likely that his Alzheimer's could have been a deciding factor in any consideration of that. The only thing she hasn't asked yet is about the diet so I'll mention that to her for his next appointment which will now be at the end of this month.

Thanks again and I'll let you know how things go.
Brother-in-law (79 yrs) had CMML but now transformed into AML. Diagnosed CMML Jan 2010 dormant until Nov 2011, AML confirmed Apr 2012. Passed away on 26th May 2012
chris
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Re: Brother in Law has CMML

Post by chris » 06 Mar 2012 11:18

Hi Joanne

That all sounds great and it's good that your sister now feels she has got contacts at the hospital and can call up with any concerns. You are doing a great job supporting her. She probably hasn't had the opportunity to do all the research you have been doing while she is looking after her husband.

Take care.

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Annjeo
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Re: Brother in Law has CMML

Post by Annjeo » 16 May 2012 17:31

Thought I should post an update for anyone who might be interested in my BiL's ongoing problems with CMML.

Approx 6 weeks ago he felt unwell, which for him despite all his ills has been rare as he hardly ever complains. Having discussed the matter with the Hospital contacts my sister has she rushed him into hospital, where they confirmed that he had the beginnings of pneumonia. He spent 2 weeks in hospital all told and during that time they also confirmed that his condition had worsened since his last monthly blood test and that he is now suffering form AML. The prognosis is not so good though they cannot give us any real indication as to how long he may be able to fight the condition. He has now been prescribed Hydroxycarbamide (Chemo capsules) and Allopurinol in the hope that they can slow the disease's progress. They also give him Platelets when required and will if needed do a Blood transfusion, though so far, they haven't got to that.

He is still fighting his feelings of being unwell, though we are not sure how much detail of his condition he either understands or takes in. Despite increasing tiredness and failing appetite he still rallies when friends and relatives call in on him. (its like seeing a light go on, his face just brightens and his smile beams and he tries his best to join in the conversations).

I guess I will start reading up on the AML threads now, but thanks to those of you with CMML that responded to my first posting and my thoughts and best wishes remain with you.

Regards

Joanne
Brother-in-law (79 yrs) had CMML but now transformed into AML. Diagnosed CMML Jan 2010 dormant until Nov 2011, AML confirmed Apr 2012. Passed away on 26th May 2012
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