CMML Any one out there,

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chris
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Re: CMML Any one out there,

Post by chris » 18 May 2011 11:48

Hi Denine
Thanks for the update and also for replying to Harold's request for info about Azacitidine. It's good for people embarking on the treatment to hear about some very recent experiences.

From what I have read, the first few cycles do tend to make people feel worse initially but when the drug starts working all the counts and general fatigue improve enormously so you have to hang on in there. Maybe in the respite period before the next treatment cycle she will start to feel better?

I feel sure that your Mum's weight loss is a feature of the CMML itself as, when mine kicked off in 2008, I felt so nauseous that I lost nearly a stone before the illness started to regress. As I am fairly slim anyway it was quite scary. As you say, it's made the injection site soreness worse as there is no fat there. I don't know if she has tried these (and to be honest they made me feel even more nauseous) but you can get high protein/ high calorie milk-shake type drinks prescribed by your doctor. I did find that drinking hot water with fresh ginger in it helped the nausea a bit but I do remember how I had to force myself to eat even a mouthful. Maybe find something that she does fancy and coax her to eat little and often? Hopefully as the treatment starts working her appetite will return too?

You must be feeling very torn at the moment - supporting both your Mum and your daughter with her new baby?

Let us know how it's going and I'm thinking of you.

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
dinace1
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Re: CMML Any one out there,

Post by dinace1 » 22 May 2011 16:27

Hi Chris
Mum's weight went down to just over 6 stone so this weekend she has been in hospital being fed through a tube, not pleasant but in the first 24 hours she gained 2lbs. She's in good spirits and feeling so much stronger.
Mum's problems it seems is more physcological (haven't spelt that right) as she has no physical symptoms that could stop her eating.
After enduring this nasty tube she intends to eat as much as she can. I guess this has shook her up and hopefully she now realises the importance of staying strong.
You know Chris I didn't realise how much strength I had until now.. I sometimes think I must be super woman or something...I wish ...lol ;)
Thanks for your support
speak soon
Denine
lesley1056
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Re: CMML Any one out there,

Post by lesley1056 » 22 May 2011 22:48

dinace1 wrote:Hello all,
Firstly let me say how glad I am to have found this site, all the other sites I have found are from America and the trials and cancer drugs available in the USA are vast compared to the UK so even though they were supportive they could not advise me about treatment etc.

My Mum is a very young 72 year old and was diagnosed with Myelodysplastic Syndrome last July, within 6 months we were told it had developed into Chronic Myelomonocytic Leukemia, CMML for short. She also has developed Leukemic cells in her skin, EML (Extra medullary Leukemia known as Chloroma)

The specialist said Mums case was very rare and not often seen and they didn't know a lot about it, very reasurring!
She was mis-diagnosed at first with CML and was wanted for the drug trials, but when it was discovered she had CMML the specialist said due to the rarity of her cancer the trials would not be cost effective as the results would be inconclusive. And that means?? what??

So since diagnosis mum has had 3 sessions of a 10 day mild Chemo course of Cytrabine. To be honest I don't know if this is helping or not, she needs blood and platelet transfusions once a week, sometimes twice. She has lost over 2 stone since diagnosis and it's hard to keep her spirits up when there is no information out there. How can we fight it if we don't know what it is.

Please can any one offer me any advice or information, We do feel so alone.

Thanking you all in advance

Denine
chris
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Joined: 01 Dec 2009 21:52
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Re: CMML Any one out there,

Post by chris » 25 May 2011 14:35

Hi Denine

I'm sure the extra calories from the tube feed may provoke a bit of an interest in eating from your Mum - not to mention not wanting to repeat the nasty experience of being tube fed!! It must be so hard to eat though when the normal appetite mechanisms aren't working. If you feel the problem is psychological, would it be possible for her to see a clinical pyschologist to try to address the issues? I have always had a great appetite and love food so not wanting to eat when I was ill was horrid and seeing the weight drop off was really frightening too.

Yeah well, you may be superwoman (!) but just make sure you get support for yourself too as you need to be topped up emotionally to be able to deal with all the support you are giving out to others. Hoping for yuor Mum to have some improvement soon.

Lesley1056
- you seem to have put a quote on and not submitted any message? Just click on the "post Reply" box and you'll be able to type in your message. You can then preview it and/ or click on Submit so that it gets posted on the site.


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
lesley1056
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Re: CMML Any one out there,

Post by lesley1056 » 25 May 2011 21:03

Hi, Thanks Chris, im not very good at this lol. Just wanted to say i was told in Feb i have CMML and am getting a Bone Marrow Transplant in a few weeks, it seems so unreal and i also feel pretty alone just now. Lesley
chris
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Location: Essex
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Re: CMML Any one out there,

Post by chris » 27 May 2011 22:56

Hi Lesley

Thanks for coming back and posting your message. I can imagine how you must be feeling at the moment, having gone so quickly from a diagnosis of CMML in February to a bone marrow transplant just a few months later. It must be difficult taking it all in. I hope you have been able to read on this forum some experiences of people who have had bone marrow transplants? If you post them a private message (PM) I'm sure they would be happy to respond and share experiences with you. There is also a publication called The Seven Steps which you can download. If you have any difficulties, please contact Sophie Wintrich as she will be able to help you with this.

Do you have a sibling donor or will you have to wait for a match to be found?

I expect the waiting is difficult now that you know it is going ahead? Are your symptoms making you feel unwell at the moment? Not sure where you live but there may be some others in the region who have had experience of CMML and a bone marrow transplant. Again, Sophie may be able to put you in touch if you feel it would help you feel less isolated. It's such a rare disease and I think we have all felt at times that we are the only ones.

I hope everything goes well for you, Lesley.

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
sophie
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Re: CMML Any one out there,

Post by sophie » 06 Jun 2011 11:35

Hi Denine,

sorry to hear your Mum is struggling so much.
I remember another patient last year who was in very low spirits. Her husband attended a patient forum event, as she would not come herself.
On hearing how depressed she was, another patient suggested that everyone in the room could write her a little note of encouragement, which her husband brought to her and she read in her own time.
I then also mailed her a transcript of a previous patient forum event, which she read bit by bit.
This all helped a lot and I spoke to her a few months ago - she is now extremely well - a changed person.
She has since also started on azacitidine.

You could ask all members on the message board to write a few words to your Mum, which you could print off and give her to read in her own time.
Ask people to send them to you directly via the PM (private message button) -or publicly on the message board.
Feel free to make that a special separate request - let me know if you need help with that.

Kindest regards,

Patient Liaison - Sophie
ps - if you also want some transcripts of previous forum events, please email me using the official address: mds-uk@mds-foundation.org
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
dinace1
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Re: CMML Any one out there,

Post by dinace1 » 10 Jun 2011 17:12

Hi Lesley
Hope your not feeling so alone now, it is so scary, my mum still hasn't come to terms with the diagnosis and it's been 6 months now. It's good news though regarding your transplant, mum is to old to be considered. I do wish you well. I found reading as much as I could on CMML helped. What area are you from?
Best wishes
Denine
dinace1
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Joined: 07 Apr 2011 00:20
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Re: CMML Any one out there,

Post by dinace1 » 10 Jun 2011 17:21

Hi Sophie
Thanks for your idea of asking all members on the message board to write a few words for Mum, she's starting the second course of azacitidine on Monday and not looking forward to it, bless her... one of the problems we had last month was as she had lost so much weight they were actually given her too much of the drug, apparently the amount you have depends on your size, so in reality she was overdosed which made her feel so ill with no appetite. This session her weight is to be monitered to avoid it happening again.
How exactually do I go about posting a message to ask members for encouraging words for mum, There doesn't seem to be many members with CMML.
Thanks again
Denine
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Re: CMML Any one out there,

Post by sophie » 22 Jun 2011 11:15

Hi Denine,

I know we don't have many CMML patients on the discussion forum, but the words of support can come from any patients really - it does not have to be from someone with a specific sub-type or medication.
You can also try the discussion forum on the MDS Foundation website. The americans are much more used to message boards and will respond a lot faster.

Please contact me via my normal email address mds-uk@mds-foundation.org - or call me for specific help for your Mum - 0207 733 7558.

I do not monitor this message board regularly so can only assist when emailed or called directly.

A lot more members are signing up to this message board - so hopefully someone will respond quickly.

Kindest regards,
Patient Liaison - Sophie
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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