my mothers journey

Please post here your experiences of MDS as a patient, carer, family or friend

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elly
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my mothers journey

Post by elly » 08 Nov 2011 15:14

hi everyone, i am writting this on behalf of my mother who has just been diagnosed with mds low/intermediate stage 1, well i say just but health has been a problem for a while with one thing an another and after many scans/tests an the third consultant told her the news after two others could not make their mind up i do appolagise for sounding negative but as u r all aware the journey can be a rollacoster just to get a diagnosis. my mother is 55 young of age and over the past two years has spent many hours at the doctors surgery. initially on diagnosis and after reading the bookloet came fear and shock my mother thought that that was it, she had lukemia on second app with consultant was given the news that did not have mds on third app was diagnosed i would like to point out that as of yet my mother has not seen the same consultant twice, we live in a small village in wales, at present treatment consist of two to three units of blood trans every four weeks blood is usually late 6 to 7 ( i do not know the med term) my mother then recieved app for different hospital university hospital of wales with dr johnathan kell, at this app my mother was seen by his understudy an offered the trial of Lenalidomide/Revlimid since reading the notes/information my mother has become concerned around the side affects and is thinking of not taking part in the trial, i have encouraged my mother to attend next app an discuss all concerns with dr kell and discuss firther options and atleast asked to be seen by dr kell on a regular basis, i would be greatful of any feedback on the trial an your experiences a part of me believes that the has not given up but maybe lost a bit of hope and ofcourse is frightened, the last thing i want to do is railroad her into makin any decisions i just want her to be aware of all her options.
janetstanford
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Re: my mothers journey

Post by janetstanford » 08 Nov 2011 17:29

Hello Elly
From what i have read you are a good support to your mother and i am sure she depends on you a lot her age is near to mine and also she has transfusions which i do
i would suggest that you get in touch with Sophie who can give medical advice as regards the trial and the meds as some on the site may have had this but as with all things different people react different ect.....
when you say blood is late ??? 6/7 (sorry do not want to seem daft ) is this the time it arrives or is this the result after the blood test for example hb 6.7 (normal for female is 11-14 units )
i would suggest after every test a copy of the results is asked for and kept this way you can also keep an eye on the other numbers for platelets ect
and you are quite right to request to see the specialist and the same doctor regular it is about HER choice and care ect

Both take care Janet :)
Jayne
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Re: my mothers journey

Post by Jayne » 09 Nov 2011 11:30

Hi Elly

I am so sorry to hear that your Mum has mds. Has she had a bone marrow biopsy? From this they can tell if your mum has mds? I would have thought this is an absolute necessary to have.

I think for you and your Mum the difficulty has been not seeing one person, and that person not being someone who specialises in MDS. If I was you I would do 2 things for now. As Janet says, speak to Sophie, she will be able to guide you and help you. I would also ask who is your nearest MDS specialist and request to see them. You need to have confidence in your specialist. I think it is also very important to see the same person, as this person then gets to know you and know your story.

It is good that you have found this forum, there are a couple of people on here for their parents.

Take care of yourself as I know this can be a very traumatic time for you too. You and your mum sound very close, just like me and my mum.

Jayne 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.
elly
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Joined: 08 Feb 2011 12:25
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Re: my mothers journey

Post by elly » 10 Nov 2011 09:09

thank u both for the reply, Janet my mothers hb is around 6 each month before blood trans will av to check what it is afterwords, thanks for the advice will deff ask my mum to have a print out of results on each visit and will give sophie a ring for some advice. Jayne my mum did have a bone marrow biopsy after many tests and then was told by a consultant did have mds an went completely into shock an thought it was AML with no treatment, then second app another consultant read notes an decided he was not quite sure what it was but not mds on third app with diff consultant again was told it was mds intermiediate stage one, u r right ladies i will deff be asking for some consistency with a specialist in mds,
thank you both for your reply and advice
take care
elly
janetstanford
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Re: my mothers journey

Post by janetstanford » 10 Nov 2011 14:45

Hi Elly

Your mams bloods are 6 then she has 3 units which would make her at 9 units approx and this is on a cycle of 28 days approx ....no wonder she is so tired if i went down to six i would not be able to sit up never mind anything else ! how does she walk in to the hospital maybe this should be discussed

she would have got a fright when told mds good she is low risK of AML although an awful situation to be in as we all know at least being low risk gives u some relief (been there) .....
also you may want to discuss iron overload i take exjade every day to combat this you are normally after being transfused 22 units over a period of time monitored for this ..this is known as your Ferritin (spelling) count this can also cause aches pains and tiredness ect a for this i have a scan due another soon as iron can get into the major organs of the body and lie there ect.. do not want to cause any concern but it is early stages might as well get it all sorted now better for your mam
i do hope you talk to Sophie soon as her advice will help
Please take care Janet :)
chris
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Re: my mothers journey

Post by chris » 14 Nov 2011 13:06

Hi Elly

I think this may be the clinical trial which your Mum is being offered? Dr Kell is the consultant at the MDS Centre of Excellence at University Hospital of Wales so she is in good hands from the point of view of her MDS - although not seeing the same person is a bit frustrating, they should all be up-to-speed on MDS there. MDS is a very difficult disease to firmly diagnose so I'm sure this explains the contradictions but it's good that your Mum has now been told she has a low-risk type so I hope she can begin to stop worrying a bit. Here is the link:

http://clinicaltrials.gov/ct2/show/stud ... ocs=Y#locn

If she does decide to go ahead with the trial, I am sure that all the possible issues/side effects will be fully explained to her - indeed she may not even receive the drug at all if she is in the placebo group as I believe it is a double-blind trial so that is the choice she will have to make. It means that neither the patient nor the doctor is aware of whether a patient is having a placebo or the drug so that there can be no bias when the results are collated. It's done when they are not really sure if a drug will help or not but Lenalidomide isn't a new drug and has been tested for safety and dosage already with people who have MDS with -5q deletion. You haven't said if this is the case with your Mum? It will have been investigated as part of her bone marrow biopsy - specifically the cytogenetic investigation and the consultant will have access to those results. So a good question for her next visit would be " Were my cytogenetics normal?"

If this trial shows that Lenalidomide reduces the need for blood transfusions and does not have too many intolerable side effects, then that could be a great relief to many MDS sufferers who are transfusion-dependent.

I hope you can continue to provide your Mum with lots of information and support and, as Janet says, please use Sophie if you haven't already as she is just brilliant!

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.
Jayne
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Re: my mothers journey

Post by Jayne » 15 Nov 2011 20:47

Chris

You are AMAZING!! Where do you get all this information from? You are so clued up we are very lucky to have you on the forum.

Thank you
Jayne
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
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: my mothers journey

Post by chris » 16 Nov 2011 13:35

Hi Jayne and all

I am only clued up because I am essentially very inquisitive, hungry for information (information is power!!) and I seem to be able to find my way about the web!! It keeps me out of mischief. In my youth I was intending to become a research chemist so I suppose I still have a bit of a scientific tendency. Also, I was a Systems Analyst so did have some IT skills - before I gave it all up to have babies and by the time I wanted to return, IT had moved on a bit in 14 years!!!

On this site under "What is MDS" tab, there is a section on clinical trials and links to various sites which can be searched for what is currently recruiting. You can narrow the search to UK and partcipating locations can be listed.

http://cancerhelp.cancerresearchuk.org/trials/

Thanks for the compliment. Made my day!!

See, I am speaking to you now - despite your efficiency. If I didn't squander so much of my time on the InterWeb I'd have my Christmas shopping all done and dusted like you! I have made my Christmas shopping list a lot easier to manage however. Agreed with my sister to not buy for nephews, nieces and boy/girlfriends etc this year. So have cut my list by about 12 at a stroke!!! Genius!!

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.
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