Hello + Referral Question

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morganellis
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Hello + Referral Question

Post by morganellis » 06 Aug 2013 18:56

Hi,

My dad has recently been diagnosed with MDS, genetics results still pending...
It was RAEB-1 with excess blasts (7%) and the consultant is currently guessing he will be intermediate low on the IPSS score.

He is 54 years old and is starting the Azacitidine towards the end of august, with a bone marrow transplant to follow possibly next spring (all being well).

Having read through a few of your posts, i have noticed that there are 'centres of excellence'. We have being going to clinics in the Leicester royal infirmary and his consultant Dr Hunter assured us they treat thousands of patients there and they know they're stuff... Yet they are not a recognized centre?

Knowing not much at all about this condition until recently I would like your opinions on staying to receive treatment at Leicester or trying to be referred elsewhere? It's hard to know what is going to be best at this point?

Thanks, Morgan.
chris
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Re: Hello + Referral Question

Post by chris » 07 Aug 2013 20:00

Dear Morgan

Sorry to hear the news about your Dad's MDS. I hope the genetic results are encouraging. The consultant will be able to make a more accurate diagnosis of your dad's risk category when he has them.

You are probably aware of where the Centres of Excellence for MDS are in the UK. It looks as though Birmingham would be the nearest geographically or maybe even Addenbrookes, Cambridge, depending which side of Leicester your Dad lives and the transport links. If not, please do ring and speak to Sophie Wintrich to talk through the issues or check the link here:

http://www.mdspatientsupport.org.uk/wha ... contact-2/

There are always issues of convenience versus concerns about expertise when considering whether to ask for referral elsewhere from a local hospital and everybody has to make their own decision about this. If your Dad is in line for a stem cell transplant next year, you may also want to take that into account too i.e. where are the centres of excellence for stem cell transplants and would that be the same hospital as the Centre of Excellence for MDS? Of course, all consultants will assure their patients that they know what they are doing and, although I don't know quite what the financial implications of referrals elsewhere are, I am pretty sure there are some for the local health trust or Commissioning group or whatever they are now called!!! It must be hard for a consultant to feel that his own expertise is being challenged - even though patients do have a right of a second opinion - and bear in mind that your Dad may need the local hospital should there be any emergency so best to keep both centres on board. Sometimes a shared care arrangement between 2 hospitals can be made? Might be worth asking about? I am also always banging on about how we, the patients, need to be able to find out which centres have the best 5 year survival rates etc, who does the most transplants which gives an indication of experience in managing the post-transplant period and any complications.

You are right - it is hard to know what to do for the best but your Dad will need you to support him whatever his decision is - whether or not you agree with it! Having treatment elsewhere can bring about a lot of very real practical and financial issues and I think we shouldn't over-estimate the value of trying to keep the whole process as stress-free as possible.

I wish you and your family well at this difficult time.

Kind regards

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
lucy
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Re: Hello + Referral Question

Post by lucy » 08 Aug 2013 20:49

Hi Morgan,
I'm sorry to hear your father has MDS.
With regard to the centres of excellence , I was treated at Southampton, which isn't stated as a centre of excellence for MDS but is for cancer, all cancers,which covers mds as well. Bournemouth is the nearest centre of excellence for mds but if you need a transplant they send you to Southampton, so I wouldn't have gained anything by going to Bournemouth except a hefty petrol bill ! I guess what I am saying is don't discount Leicester, they probably do treat a lot of MDS and other blood cancer patients, just ask lots of questions. I know my husband worked with someone whose mother had a stem cell transplant at Leicester about six years ago so they must have experience. As for transplants, I'm nearly four years post transplant now and feel great and I was older than your father when I had mine. Go forward with hope!
Regards
Lucy
MollyP
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Re: Hello + Referral Question

Post by MollyP » 09 Aug 2013 09:32

Hi, sorry to hear your father has MDS.
My husband has the cmml strain. We are now working locally with our hospital's oncologist but also visiting King's. We too were concerned about upsetting our local consultant but he was perfectly lovely about it. If it were a member of their family they would be keen for a second opinion too so just ask because I am sure they will understand your needs and worries.
With best wishes
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)
morganellis
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Re: Hello + Referral Question

Post by morganellis » 30 Aug 2013 19:44

Hi all,

He started the Azacitidine on tuesday, and apart from local discomfort around where it is injected, he's had no other problems.

Does anyone have any recommendations for anything we can be applying to ease the soreness? We have got some aloe vera, but was wondering if there was anything else anybody used?

The consultant also said his genetic results were good, (she explained they were either good, poor or moderate) I'm not sure what that meant to be honest, or whether i should ask exactly what the results were?

Chris -
I have had a search round for similar lists of centres of excellence for the transplant but none exists that i could find, which is problematic when trying to make this decision!

Lucy -
I don't suppose you know how your husbands work colleague is getting on now after their transplant at leicester?

Molly -
What are your visits to Kings for? Treatment or to see the consultant?

Also, thankyou all for the well wishes, its a comfort to know this wealth of experience is available!

Morgan.
chris
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Re: Hello + Referral Question

Post by chris » 31 Aug 2013 20:28

Hi Morgan

Copied from a previous reply:

Please search this discussion forum for experiences of Azacitidine. There are posts particularly by David and also under the heading of "MDS in the family" where there is a link to a blog where a father and daughter both had MDS and the father is a long-term Azacitidine user. The important thing to remember is that it usually takes several cycles before it starts to work and that some cell counts will go down before they go up again.

There is a link to the Macmilan site for info about Azacitidine:

http://www.macmillan.org.uk/Cancerinfor ... idine.aspx

Some patients have found evening primrose oil helps alleviate the injection site soreness that some patients experience. Again, search this online form for evening primrose oil and experiences will come up.

The classification of the genetic results is actually more detailed now - there are 5 categories, not 3. I attach a link to the latest way of classifying. You may need to ask your Dad's consultant whether she just meant Good in a general sense or specifically in the IPSS-R categorisation where Good is the second best after "Very Good!!

http://www.mdsbeacon.com/news/2012/08/2 ... m-decoded/

I really do think that we should be able to ask about success rates for stem cell transplantation. It should be public domain info. We can use Dr Foster website to find out things about hospitals' MRSA rates etc but what we want to know is about 5-year survival rates etc following certain procedures. It's something we only get one crack at and I want to know where my odds of survival are greatest!!

Hope the Aza is not too troublesome and that your Dad starts showing benefits.

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
davidmiller

Re: Hello + Referral Question

Post by davidmiller » 01 Sep 2013 11:51

Regarding soreness at site of Vidaza injections. I am in the middle of my 22nd cycle and although it does get a bit sore I have never bothered with any creams etc and the soreness has usually gone by the Friday of the second week. One of my fellow patients uses an ice pack and claims that it helps. Good luck, David Miller
lucy
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Re: Hello + Referral Question

Post by lucy » 04 Sep 2013 12:17

Hi Morgan,
My husband has recently retired but the last news of his colleagues mother was that she was fine.
With regard to where to have the transplant there are practicalities that you need to think about.
If your father needed chemo prior to the transplant this could entail up to two separate stays in hospital, probably in isolation, for up to six weeks each time. Then it would be another five to six weeks in hospital for the actual transplant. How easy would it be for family and friends to visit if the hospital was a long way from home? I can testify to the fact that a day without a visitor when you are in isolation is miserable. Then when you are home after the transplant you will need to go to the hospital twice a week for the first few weeks and then once a week for the first few months. Also, with the best will in the world there is the almost racing certainty that you would have to be readmitted with an infection, which means getting there fast.
I was lucky that as we are only 10 minutes from the hospital I was allowed out, during the chemo, to sit in the garden as they said it was safer for me there than sitting in the hospital grounds to get some fresh air! Another bonus of being close to home.
All you can do is ask Leicester how many transplants they have done. I doubt weather they would give you survival rates, every patient is different and there are so many variables that could effect the outcome.
I've rambled on a bit here I'm afraid,I know these decisions are hard.
Take care
Lucy
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