Dad recently diagnosed - waiting and anxious

[Nyanko]

Hi all

As the title says, my dad has recently been diagnosed with suspected MDS, although we don't yet know what kind. When I first researched the disease (having not heard of it before), I was extremely upset at the low life expectancies quoted all over the internet - however, a month or so on, and having read through the postings on this site and learned that a) people can live for many years with it after all, and b) the internet is full of overly scary facts and figures about it, I have calmed down a lot. So, thanks to you all for that!

Nevertheless, it's hard not to be anxious at the moment. Here's what's happened so far with Dad:

- his doctor noticiced his red cell count was low (11) during a routine test last November. A further test at the end of January revealed it had dropped to 8 point something. It was at this point that MDS was suspected, and he had a bone marrow biopsy in early February.

- He had a 3-pint transfusion on February 19th, which the doctor said should raise his RBC count from 8.2 to 11.2. He felt better for a week after the transfusion, but then started feeling tired and losing his appetite in the middle of the week after.

- Blood test last Monday (4th March) revealed that not only had his RBC count dropped to just below 7, but his white cells and platelets were lower than pre-transfusion levels too. He was immediately admitted to hospital, and over the course of last week, had 9 pints of blood transfused. Another bone marrow sample was also taken (no sign as yet of any results from the first one - but the doctor warned it could take many weeks). He was discharged last Friday with a RBC cell of 11, and advised to follow a neutropenic diet because of his low white cell count.

So, now we are waiting on the bone marrow results, which Dad's haemotologist has requested on a priority basis - we are expecting those in a couple of weeks. Before the results of the post-first-transfusion blood test, which the haemotologist was apparently visibly shocked by, Dad had been told he was probably RARS or RCMD. It looks like this is now being revised.

I've spoken to Sophie, who has been very helpful, and I know I shouldn't worry myself unduly until all the test results are in, but I'm concerned by how rapidly Dad's counts are dropping, and how transfusion dependent he might end up being (and even if that will end up being the worst of his problems - at 64 he might be too old for a BMT, and has no blood relatives other than me anyway). Also, I am pushing really hard for Dad to ask for a referral to the local Centre of Excellence (Queen Elizabeth in Birmingham, where his bone marrow sample has been sent) - it's only about an extra 45 minutes longer to travel than their local hospital in Wolverhampton, but Dad is reluctant to do it as he doesn't see the need. This is frustrating for me, as I want to get him to understand what a big deal it is that he gets the best possible care for such a serious condition, without frightening him too much (naturally both my parents are very stressed and confused about everything that has happened in the last six or seven weeks).

I'll post again when he gets his BM results, but any advice or thoughts anyone has in the meantime will be most welcome:)

[Jayne]

Hi Nyanko
I am sorry this is happening to your Dad. I do suspect that he has had 9 units, not 9 pints of blood. Especially when you said his counts had risen from 8.2 to 11.2. Each unit of blood tends to add 1 digit to your counts, ie your dad went form 8 to 11. Each unit tends to be around 270/310ml so hopefully not quite as much as you were thinking. I also thought I had 3 pints of blood at my 1st transfusion and I just thought 'how is that extra volume going to fit in my veins!' Anyway it does and it wasn't 3 pints but 930ml, lol!!!

I would definitely suggest you go to Birmingham. This is such a rare disease that I personally believe you need to be at a hospital where it has been seen and treated before. It is a very specialist subject so it needs a specialist to look after you. You have the right to be referred so use it!

In the beginning this can be a very confusing and frightening disease. Once his diagnosis is confirmed from the bone marrow biopsy (and they can do it quick if they need too, they did it in 1 week for me back in January) then a plan for treatment can begin.

Anyway, I wish you and your Dad all the very best.

Take care
Jayne

[Nyanko]

Thanks Jayne, Dad refers to it as pints so I've just been following him - it's quite a lot, anyway!

I am fully on board with a referral to a Centre of Excellence, it's getting Dad to ask for it that's the problem. He's not the kind of person that likes to rock the boat. But, it's so important for him to pursue the best care possible. Maybe when the BM results come in, his current haemotologist will suggest continuing his treatment at the QE anyway. I hope so.

[Jayne]

I know some people are afraid to rock the boat, I think I am scared too but I do gently ask for what I want! Yes, hopefully his local haematologist will refer him. Mine did just that. I was at York and my haematologist there said he would send me to someone who specialises in MDS in Leeds. I was very lucky to get Professor Bowen who is internationally known re MDS. When you have faith and trust in what you are being told it makes all the difference.
Can you go with him to his appointment? It might help both of you if you did.
Just a thought.
Take care, Jayne x

[Karen]

Hello Nyanko

I'm sorry to hear about your Dad's dignosis. I know exactly what you're going through. My Dad is now 63, and he was diagnosed in June 2009. He has been having regular transfusions for low Hb since late summer last year. The low Hb is his biggest problem, altough he has required platlets a couple of times.

Firstly I will say, don't let what you read on the internet frighten you (I know that it's easier said than done). The prognosis is generally based around median survival figures and is not a general life expectancy. Once you get the bone marrow biopsy results you will be in a better position to understand the extent of his condition. I think that you are quite right to try to get referred to the centre of excellence. My Dad goes to Kings, they really understand the condition, and centres of excellence may have drugs trials that he may qualify for.

I know that this is a frightening time, but there is lots of information available here, and people on this forum are lovely and very supportive.

Thinking of you and your family.

Karen x

[chris]

Hi Nyanko

Sorry to hear how upset you all are. I'm sure that most of us on this Forum have "been there". It's a horrid diagnosis but you are right to be cautious as some of the internet info relates to even a few years ago when knowledge and treatment options for MDS were not as wide as they are now. Many hospitals are part of groups with specialist clinics for particular diseases and it may well be that the consultants in Wolverhampton will be in close touch with MDS specialists in Birmingham. It is difficult for you in this respect as many people are happier in their familiar local hospital and if your Dad is feeling totally fatigued anyway because of the low Hb, an extra 45 minute journey to a strange place could seem quite overawing!

Bone marrow results - the lab ones which look at the cells in the bone marrow itself should come in quite soon but the chromosome tests done on the bone sample often take a while due partly to the process itself and partly to the demand on the specialist labs which do this. So you may find that they already have some of the results but may be wanting to wait until they have the full picture as that may make quite a difference to the prognosis.

64 is not too old for a stem cell transplant if your father is otherwise in good health but he will also be able to find out about this from his medical advisers as it may not be the best option give that there are now some very effective drugs available which do not carry the same risks. Lots of big decisions but you cannot do anything until you have all the results and been able to have a good discussion with his doctors. I would suggest that you ask your Mum and Dad to write down questions about things which are worrying them and take them along. Would your Dad be happy for you to go along too? It might be useful to have another head there as it is often hard to take in everything?

MY thoughts are with you and your family at this difficult time and I hope you soon will have the answers to a lot of your questions. Do keep in touch.

Best wishes

Chris

[Nyanko]

Hi Jayne, Chris, Karen

Thanks you all for your kind words, and my thoughts to you and your families too.

Spoke to mom yesterday, apprently Dad's been more happy and energetic this last weekend than for many months (a combination of the 9 units of blood last week, and relief at being released from hospital, no doubt!). But, it's clear that he wants to keep his head firmly in the sand for the moment. He went into hospital for a blood test yesterday and scarpered before they gave him the results, prompting an annoyed phone call from a nurse to Mom afterwards - his neutrophil levels were lower than expected, and they wanted to talk to him about it. The nurse also said he'd been told to buy a thermometer and have his temperature taken twice a day (to make sure he's not picking up infections), which he didn't tell anyone. Mom says he clams up or changes the subject whenever she mentions anything to do with his health. He even threatened to stop telling her when his appointments are, so she doesn't come along and "interfere". I suspect that might make it difficult to get him to agree to me coming along too, although I do think it's a good idea...

SO frustrating. On one level, I understand that he HATED being in hospital last week, and is basically taking the attitude of "if I say there's nothing wrong with me, I won't get re-admitted." But he just can't afford to do that, as you all know. Much better that he spends a couple of days in hospital on antibiotics on the basis of a slightly raised temperature, then ignore the warning signs and end up in there for weeks with something very nasty.

He'll be forced to accept the seriousness of this all at some point, I guess. We'll just have to tread very, very carefully with him in the meantime:(

[Jayne]

Karen

I can totally understand your Dad's reaction and I think it is very sad that he is feeling this way. He must be very scared internally.

He needs to understand that there are lots of options open to him and that he isn't going to die soon as long as he listens and takes advice from the specialists. He just needs to find out what his options are!

He is too young to bury his head in the sand. If he wants to be here for a significant amount of time then he has to start doing what is required of him. I could get cross at him myself, lol!!! I dont mean to sound harsh but people only want to help him.

Why dont you show him this forum.

He needs support and you are doing marvellous, I think he is very lucky to have you as his daughter. I think you and your Mum would make a marvellous army of support! It's hard when you get pushed away though.

I feel for you and wish you all the best.

Jayne xxx

[janetstanford]

Nyanko

I can understand your dads reaction not so much the denial but being scared of both hospitals and illness i had issues to deal with when i was first admitted with the testing esp the bi-ops awful but you even get used to them
when your ill esp when seriously the thoughts you deal with and the doubt about the future can make us reject the fact we are ill need help and treatment

i think maybe you could talk to his doctor and nurse specialist they may be able to help i believe in special circumstances the nurse can visit your home maybe his gp would do a home visit and discuss the issue which may help

i agree with Jayne show him the forum he is not the only 1 out there maybe if he knows he is among many he may have a change of heart when your ill you need the help and that is what the hospital and staff are trying to do
with a low neut count i would suggest a talk with his nurse or doctor as they may put him on antibs and or antivirals for a long period to protect against infection i was on both for almost a year until my marrow grew back and i was able to fight infection myself

and your mam please give her my best wishes i do feel for her the worry she is carrying and also supporting your dad ...
good luck Janet

[Nyanko]

Jayne, Janet

Thanks for the kind words. I do understand why Dad is acting the way he is at the moment, so I'm not pushing or nagging, and I've told Mom to be patient with him (as she's getting very frustrated too). But on the other hand, I don't want him to put himself at risk by not engaging with the situation properly. I think things will change when he gets his BM results and hopefully a full diagnosis and treatment plan, which should be very soon.

I debated for a few weeks over whether to get him to read this forum, but it's too late now I've posted on it myself - he'd go nuts if he saw I'd been sharing his "business" with strangers online! However, he does know I've been in touch with Sophie and have found this community of people with experiences of MDS, so I can report back to him with any interesting findings or advice that comes from here.

Thanks again