CMML specific messages

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Jayne
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Re: CMML specific messages

Post by Jayne » 11 Oct 2011 10:12

I definitely want to go to 'la la land' the next time I a biopsy. I've only had 1 but wow it was painful.

When do you get your results Christine? Fingers crossed everything has stayed the same or better for you!

x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
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Re: CMML specific messages

Post by chris » 11 Oct 2011 13:24

Hi Jayne, Janet, Denine

I think now that it all entirely depends on the person doing the biopsy and if done well it can be fairly pain-free. I've peeled off the plaster now and there is a lot of bruising and several entry marks - can't remember this from previous times but as the outcome was pretty good I'm not complaining. I asked whether the bone re-grew and the doctor sad that it did to some extennt but never fully so guess we will all have quite lacy hip bones at some point! Dr Vyas at the Patient Forum was suggesting that experts were now of the opinion that an annual BM biopsy would be a good thing! Yes, I suppose it would - unless you are the patient!!!

My next appointment is 19th December but I am hoping I will be able to get the results by the end of October and, yes, very much hoping for "no change". The chromosome results take a while to process but the initial slides are looked at quite soon I believe.I am not nearly as agitated about the results as I was when first diagnosed. A close friend (who also has a life threatening illness) often talks to me about not wasting energy on worrying until you really need to and it's a philosophy I am trying to follow!!

Hope all well for you all

Bye for now

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: CMML specific messages

Post by janetstanford » 11 Oct 2011 16:17

ARE MY GOD CHRIS
ooh glad you had the drugs the thought horrible ;) ..... and the plaster the ist 1 i had i think i waited a week did not want to go any where near the site oooh ..after 2nd 3rd and 4th a couple of days did it ...never did i see marks and every time only 1 entry mark my doc must have a steady hand :) ....and yes quite right about the bone which have to say did concern me at first.....got over it do hope you get your results soon please share we will hope for the best results for you

and the energy yes quite right we should all try to do that :)
the posts on here today are certainly giving us food for thought i am still thinking of maggies treatment quite horrible

hear from you soon take care Janet :)
chris
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Re: CMML specific messages

Post by chris » 19 Dec 2012 15:12

Hi to all

Thought I would do a post about me!!

Went for my 3-monthly check at Addenbrookes on Monday and, although all other counts were pretty much as normal for me, for the first time my haemoglobin has just dipped below 11 (10.9) , having been very stable and around 11.5 for several years. I know compared with some of you that is fine but red cells haven't been my "problem" so far so I am really hoping this is just a blip following a nasty chest infecton which I had for 3 weeks in November... but it has made me a bit anxious!

Also, and not necessarily as a result of the above, they are after my blood and bone marrow again!! So am booked in for Jan 21st. Not looking forward to it - although last one wasn't too bad. All depends on the doctor's technique I think. The gas and air seemed to help last time so will go for it again!!

Well, I hope you all have a great Christmas and a happy and healthy New Year.

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
CHME9
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Re: CMML specific messages

Post by CHME9 » 12 Jun 2019 10:17

I am keen to continue the discussion on CMML but notice all these posts are very old - is anybody viewing?
I have CMML - first indications came from unrelated blood test in September 2016 but it was not until May 2017 that the condition was identified as CMML 1 - low risk - Bone marrow blasts were 4%, platelets low at 37 and white blood cells slightly elevated. Subsequent BM aspirate showed 8% blasts in November 2017 rising to 18% - high risk in September 2018. It was decided to end wait and watch and start treatment. Hydroxybaromide was proposed but this was changed to Azacitidine - I wasn't involved in any discussion about this change. Still feeling well with no outward symptoms of the disease - except for itchy skin after showering. I had some elective surgeries to get out of the way before the start of chemo - this took some months and have now completed first session of Aza. The evening of the first day of treatment I was unwell but other than soreness from the injections its going ok.

I have some doubts about the future! Looking at the stats for CMML outcomes are not good. The molecular test give me a median survival period of 14 months (from September)!
My view is that the only chance for recovery is through a sct for which I am being considered once the blasts are down to 4%. However I am doubtful Aza will be effective and even so the risks from sct will be high but given the alternative may as well be taken.

I would welcome the view and experiences of others with CMML. Its hard to get a grip on this disease

Male 68 years old
chris
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Re: CMML specific messages

Post by chris » 18 Jun 2019 15:19

Hello there

I'm afraid that CMML, being one of the rarest sub-groups in the MDS "family" of diseases, doesn't get so many posts on this Forum and I'm sorry not to have got back to you sooner.

I''m Chris and have had CMML for 11 years - although, like you, it was a year after it kicked off (in a bit of a dramatic way - see my other posts!) that I got diagnosed.

I was sorry to read of the fast progression from low-risk to Azacitidine treatment. From meeting other patients, I understand that it can take about 6 cycles with Azacitidine before it can be deemed to be working or not so I'll keep my fingers crossed that it works for you. When it does work, it seems that it can go on working for quite a while so, hard as it might be, do try not to be too gloomy about what lies ahead as it is all rather unpredictable. Other patients report that evening primrose oil helps with injection site soreness so may be worth trying if you haven't already? The median survival you mentioned also is the survival WITHOUT treatment and I guess it's a good sign that you don't really have too many bothersome symptoms to deal with. Having an SCT is a difficult decision and certainly not an easy option - in my opinion.

I'm afraid I don't have any experience of the treatment you are on but you'll find plenty of posts on this forum about Azacitidine.

You're also welcome to private message me if you wish, plus of course Sophie is a useful source of information and support. See contact details on the website.

Wishing you all the best

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
CHME9
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Re: CMML specific messages

Post by CHME9 » 20 Jun 2019 20:22

Hello Chris
Thanks for answering my post. I have my fingers crossed that I will be around for longer than the prognostic schedules indicate. But I do find it strange how they are compiled. Are doctors observing patients without treating them in order to formulate these scales? Seems unbelievable. Also the stats seem to less than rigorously compiled. I now think this disease started a couple of years earlier - using the issue of itchy skin as a symptom. There is something to be said for routine blood count tests as this would provide an early warning for the presence of the disease. However all the info I have gleaned suggest Aza won't work longer than 12 months and there's little to fall back on after that. SCT is very risky but is the only procedure that can provide a cure. I have had 3 friends with leukaemia - none survived very long, - The American Cancer Society shows 63% of CMML2 developed AML within 5 years and only 10% of CMML2 patients lived longer than 5 years which is the reason for my gloominess. But you are doing well - brilliant
christina
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Re: CMML specific messages

Post by christina » 29 Jun 2019 15:40

Hi Chris just been reading your last blog and I'm now on my 14th cycle of azacitadine and although a few side effects am able to lead a fairly normal life, for me I have to focus on every good day and enjoy being here, I do know how hard it is to not dwell on the future but who amongst us of a certain age knows what the future holds so important to stay positive warm regards to everyone Tina (Christina)
CHME9
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Re: CMML specific messages

Post by CHME9 » 30 Jun 2019 15:44

Thanks Christina for your post. You have done exceptionally well on aza but do you know why? If you have stem cell mutations perhaps they are the kind that aza works against. As far as I am aware there is no index of mutations available to look up to see the effectiveness of treatments. And very few clinical trials. All I can go is general information that aza won't be effective - if at all - after about 9 months. I'm into my second session with aza - result so far platelets at all time low (42) WBC down to 14 - still high but about average. Not enough to draw any conclusions.
The hardest thing for me is the day to day existence - I potter about the house, avoid social contacts and have put many activities such as travel on hold. Still I am relived its not got worse as I had expected transformation To AML some months ago
chris
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Re: CMML specific messages

Post by chris » 17 Jul 2019 12:35

Hi again CHME9

Anecdotally, as Christina also has found, quite often if Azacitidine DOES work, I've known of quite a few people who have been on it for many years and it staves off AML so I'm keeping everything crossed that you fall into that group. It can take up to 6 cycles to show whether it is working for you so, unfortunately, you do have to be a little patient! If you are struggling with the emotional aspects of this (and why on earth wouldn't you be?!), it might help to speak to somebody about it and maybe your GP or consultant could arrange that? I can understand why you are holding back on social contacts and travel but that can also add to feeling low about things? I well remember the feeling that everything was a bit pointless but, with time, I've got back my mental equilibrium so I hope that you can find some things to do which lift your spirits a bit? Simple things like walking in lovely places works for me or beating the weeds into submission on my allotment and going home with a trug full of home-grown fruit and veg. Also, talk to people about how you feel. Don't hide it away Have you got family or friends who can help? Sophie Wintrich is a good source of information about some of the statistics you mentioned so it might be worth giving her a ring?

Wishing you all the best

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
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