So, when might the treatment start?

Chronic myelomonocytic leukaemia (CMML) is a rare type of blood cancer. In CMML there are too many monocytes in the blood. Monocytes are a type of white blood cell.

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MollyP
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So, when might the treatment start?

Post by MollyP » 02 May 2013 07:30

I know CMML is different for everyone with all the different bits of the blood being able to be higher or lower than someone else's so I do appreciate that the start of treatment is very variable but what I can't seem to get an answer to at the moment is:-

If my husbands Monocytes are up to 5.0 now, rest of blood still OK, no enlarged spleen, what number can we expect Monocytes to go up to so that they affect the other bits (platelets etc) and move the diagnosis into stage 2.

Are we talking 20, 100, or higher?

My husband is very active and wants to live life to the full and I want to make that happen for him but I feel at the moment we have had the planning of our retirement swiftly removed from our control, there are certain things we had planned to do in the next couple of years and I want to get a grip on should we be doing them sooner.

Molly
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
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Location: Essex
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Re: So, when might the treatment start?

Post by chris » 14 May 2013 10:50

Hi Molly

Have only just got back from holiday so not seen your posts before.

I have CMML-1, currently no treatment and on active monitoring (watch and wait). The grading from CMML-1 to CMML-2 is more dependent on the level of blasts (from the bone marrow biopsy results), rather than increases in the monocyte levels. If you don't know already, be sure to ask about blast levels next time you see your doctor.

As with other types of MDS, CMML may be unpredictable so nobody could really tell you how it might progress in your husband's case, though the cytogenetic abnormalities, if any, and the blast count are indicators - both from the bone marrow biopsy. Do you have that information yet?

I was "struck down" with CMML coming up 5 years ago and information about this sub-type at the time was not very encouraging. However, I am happy to say that it does seem to have remained relatively stable over that time, with monocytes hovering just over and then just under 1, though platelets are falling gradually and are now around 75. Enlarged spleen is a bit of a pain - literally - but again seems to have stabilised around 19 cm.

You both seem to want to carry on and do things you have planned to do, so I would say, get on and do them!! None of us knows what is around the corner and while your husband seems untroubled by any health problems as a result of the CMML, this would be a good time to put your plans in to action. When I was diagnosed, though not feeling unwell, I worked for a couple more years and then decided to take earlier retirement than I might otherwise have done and I certainly have not regretted that! And I feel that possibly my disease progression has benefited from lessening of work-related stress! It's only money!

I know you are in touch with Sophie so do speak to her with any issues you have and, of course, do ask your haematologist.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
MollyP
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Re: So, when might the treatment start?

Post by MollyP » 14 May 2013 18:21

Thank you for replying Chris.
My husbands monocyte level has risen to 5 since January. His blasts we were told was 'depends who is counting' and that the reason for the diagnosis of cmml was that no other reason could be found for the fact the WBC was slightly raised and the raised monocytes. The bone marrow had no evidence of Jak-2 (I think that how you write it).
He has for the last ten years consistently had high monocytes but the other bits of blood had been ok.

It just makes me wonder if we should be going to Kings for a second opinion.

We are just cracking on with life, he feels fine, no fatigue we would account to cmml, and just trying to understand this diagnosis without it overtaking our life.

Best wishes
Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: So, when might the treatment start?

Post by chris » 16 May 2013 22:29

Hi Molly

Counting blasts may be a matter of judgement but I am sure they should be able to tell you if they were below 5% or not! If other blood counts are normal, then I don't think high monocytes alone would cause fatigue - it's low red blood cells which do this. My red blood cells are OK and fortunately this means I do not suffer from fatigue as many other people with MDS do. However, are you saying that the other counts are now changing?

If you haven't already got it, it might be worth asking your GP for a copy of the diagnosis as it helps to see it set out on paper. I think sometimes we like to seek a second opinion when what we really need is a clearer explanation! Does your current hospital have a clinical nurse specialist who you might be able to ask for more information? If you still feel unsure you are entitled to seek a second opinion.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: So, when might the treatment start?

Post by MollyP » 10 Jun 2013 02:48

Hi Chris
Just back off our hols too so apologies for a lack of reply.

The latest test showed the monocyte dropping to just above 3.0 (which was a big drop in my opinion) and the other bits not changing much, sorry I have not got results to hand at moment. Hubby is pleased with the monocyte drop and is not worried about the other bits. He is still feeling well, no fatigue that can't be attributed to something else either.

We are hoping to go and see a specialist In CMML in the near future, we are waiting for the referral letter now. I think that appointment will give us more information but I am not sure hubby wants to know too much so I am not sure where that leaves us, maybe him sitting outside and me inside asking all the questions, lol.

Regards
Molly
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: So, when might the treatment start?

Post by chris » 10 Jun 2013 13:23

Hi Molly

Hope you both had a good holiday? You are probably not the only partner of an MDS sufferer who is more interested in the disease than the person themselves!! I hope that you are both able to get the amount of info you need when the referral finally comes through. It looks good that the monocytes seem to have come down- as you say - quite significantly and it would be good to get a second opinion as CMML is a rather rare type of crossover disease -part MDS and part myeloproliferative so it is not always clear-cut on how to treat.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: So, when might the treatment start?

Post by MollyP » 14 Aug 2013 20:00

Excellent news today, although the .bone marrow biopsy was sheer hell,the blood test taken on same day show the monocytes down again, they are now 2.5, half what they were when I started this thread earlier this year.
Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: So, when might the treatment start?

Post by chris » 14 Aug 2013 21:05

Hi Molly

Good news re the monocytes. Hope you don't have to wait too long for the full results. My monocytes vary from just over 1 to just under 1!! Interestingly when I was very ill when the CMML kicked off 5 years ago, they went up to over 4 and I had lots of horrid symptoms - -including unbelievable fatigue even though my Hb was normal.

Keep in touch.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
MollyP
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: So, when might the treatment start?

Post by MollyP » 17 Aug 2013 16:06

Hi Chris
Don't know how long we will have to wait for the results but hubby feeling much better today and apart from an ache is up and about and walking the dogs.
Love
Molly
Xxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
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