Dad recently diagnosed - waiting and anxious

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

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richard barker

Re: Dad recently diagnosed - waiting and anxious

Post by richard barker » 10 Apr 2012 19:55

I am 66 and was diagnosed 2.5 years ago - so so much for the Internet predictations of my death. Ignore any sites unless pointed to be this site - most of the others are really out of date. Take him along to a Sophie arranged Support Group Meeting if you can - We found them very useful

I have been on Azacitadine for 9 months and I am doing well. Your dad sounds like he has a different variant to me.

The key to success is getting to a Centre of Excellence and then making sure your local hospital - who may do many routine things - are on the ball.

Have a look at our BLOG. Remember we both have a different type of MDS so some bits will not apply.

Good luck

Keep bright, keep him active and force him to keep doing things for others. It really helps

Richard
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 20 Apr 2012 12:40

Thank you Richard, I had seen your blog and it was very interesting - I was intending to show it to Dad when he started on the Aza.

Well, it's been another bad week and a half. I was on holiday overseas from Saturday until yesterday, but when I spoke to Dad the Thursday before I left (the 12th) he sounded resonably perky - he said the symptoms I mentioned in my last post were tailing off. Got back to Britain yesterday to discover he has been hospitalised since Monday. He went very, very ill at the weekend, and it seems he had an infection all along. This week he's had a saline drip, potassium, anti-fungals, and various antibiotics, but is still not right - his temperature keeps randomly spiking and they're not sure why. They are waiting for his temperature to stabilise so they can transfuse 3 more units (his RBC went down to 6 at one point this week).

This is exactly what I was afraid of. It turns out that last week, when he was having all those nasty symptoms, Mom had been allowing him to take his own temperature, and he had been telling her it was normal when it wasn't. I am so, so scared that he has has now put himself at terrible risk. I *know* we've done all we can to persuade him to take his wellbeing seriously, but that's going to be no consolation at all if the worst comes to the worst.

What's also alarming is that I just got off the phone to him, and they have taken another bone marrow sample - he says they think "something's changed" and they might have to give him something stronger than Aza. What could this mean? He's not even close to being in a position to have a STC, but I don't know of any treatment that falls between Aza and that.

Everyone please keep everything crossed that he can get through this and have some kind of effective treatment.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Dad recently diagnosed - waiting and anxious

Post by Jayne » 20 Apr 2012 15:06

Hi Nyanko
I do have everything crossed and am sending you lots of hugs, keep strong.

Your Dad is now in the right place and will be looked after. At least he cant fob the nurses and doctors off and will hopefully do as he is told!!

I dont know what treatment will be offered, I'm not that keyed up I'm afraid.

Do take him being in hospital as being positive because he just doesn't seem to accept what is happening to him. Maybe he can receive some help with this whilst in hospital, ie some form of counselling. He does need to take his illness seriously and act when he is unwell. If he does then he may just have more good days than bad days.

I do wish him all the very best. My heart really does go out to you, I can hear how hard this is on you. Parents eh???? It's the other way round for me, my Dad is heartbroken over me and I do have to be positive and strong when I am around him otherwise he is just so sad.

Keep your chin and keep smiling xxxxx
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.
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: Dad recently diagnosed - waiting and anxious

Post by janetstanford » 20 Apr 2012 16:21

Sorry to hear that you have returned from your holiday to this awful situation finding out that your dad has been in hospital since monday with an infection
you and your mother must be very upset wanting him to get well doing your utmost to help ect ect
jayne is quite right parents who would have them :?:
just a thought as he is in hospital is there another person on the ward with the same illness you could ask the nurse maybe they could direct them towards your dad ...they may strike up a conversation this could help the situation ......
i hope he gets well quickly and is able to have his transfusion as i know if his hb is low how he must be feeling tired run down dizzy and trust me very grumpy and emotional (i know i am horrible for a week or so :( ) this would perk him up and i am sure this would enable him to see the error of his ways (maybe) and help him take a step forward in the right direction :)

i do hope you enjoyed your holiday did you go anywhere sunny :) sure you had a really good time (although it may be a distant memory now )

please take care Janet
Sarah Reakes
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Joined: 11 Aug 2011 17:51
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Re: Dad recently diagnosed - waiting and anxious

Post by Sarah Reakes » 20 Apr 2012 23:03

Hi Nyanko,

I think Jayne and Janet have said it all perfectly. In many ways your Dad being hospitalised may be just what is necessary for your him to re-evaluate his attitude to his illness. Of course, now that he is feeling so poorly because of the infection, he is naturally going to feel low and fed up and will have to be handled delicately. If the medics could try and help him with his psychological and emotional state and offer him some form of counselling whilst he is an in-patient then it may well help him.

Also if he is on anti-depressants, they can take a good 4-6 weeks to take affect and in many cases you can feel worse in the first 4 weeks than you did in the first place (this is written in the leaflet that comes with the tabs). I certainly found this and I wouldn't want to go through that feeling ever again. I can honestly say I was on them for over six months and I felt worse on them than I did before. I was put on them by my GP for the first time ever, 4 months before my MDS was finally diagnosed because I was feeling so low and exhausted and I agreed very reluctantly as I really didn't feel it was the right way to deal with unexplained physical symptoms. However, when I then asked my GP if I could come off them as I assumed that my new MDS diagnosis must have accounted for the way I had been feeling, my GP said no which I couldn't understand and so I continued for a while longer but I felt so foggy, disorientated and generally awful that about four months ago I took myself off them in a gradual and controlled way (i.e.: took one every other day, then every other two days and so on for a couple of months until I finally stopped) and I can honestly say I have felt so much better since I came off them.

I believe that GPs are too quick to prescribe anti-depressants rather than offering alternative ways of dealing with emotional distress. Often counselling, a caring approach and possibly a change in diet (certain foods are good as they contain elements that are good for the brain) as it is often due to deficiency of serotonin (not sure if I have spelt this correctly) that is key for controlling ones mood. I think it is asking a lot of one's body when it is already undermined by the MDS disease to then bombard it with more chemicals in the form of anti-depressants to deal with!

I am really so sorry that you are going through this difficult and worrying time, and it is so difficult when you are dealing with parents for whom you have no influence or control. Even though children can be incredibly difficult and rebellious, there is that element that you are in 'charge' and can guide them. It's a whole new ball game when the roles are reversed.

I hope your Dad's condition improves and that the medics get on top of his condition and start an affective treatment regime, and that your Dad starts to take control of his own health and wellbeing.

Kind Regards

Sarah (Reakes)
Aged 62. Diagnosed with MDS 5q-, June 2011 & been on Wait and Watch regime On 25/11/14 told disease had progressed to High Risk with 15-20% blasts. Starting Intense Chemotherapy on 20/1/15 prior to SCT. Live in Yatton near Bristol/Clevedon.
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 24 Apr 2012 10:25

Thanks for all the support everyone, it really means a lot to me.

Just to update, Dad is no longer experiencing temperature spikes, although he is still in hospital under observation. He's been a lot better over the last few days, and, after another couple of units of blood, I think he might be out in the next 24 hours (fingers crossed).

The big worry now is that there has been talk of skipping the Aza because it "might not be strong enough" (quoting the doctor that saw Dad yesterday). Dad didn't ask the details, but the doctor seemed to be saying they are thinking of doing something that will keep him in hospital for 10 days. As far as I can tell, this could only be 7+3 day induction chemotherapy, which means they are treating Dad as an AML patient. But, what does this really mean? If it's MDS that's turned into AML, surely the standard treatment is still Aza - I thought only de novo AML was treated with chemo? Does this mean Dad never actually had MDS? They have been referring to him as a leukemia patient in the last week, I gather, but that doesn't really clear things up.

I'm uneasy about all this - my instinct is for him to get a second opinion from the Queen Elizabeth. Keeping myself informed has been my way of getting through all this so far, and now I'm in the dark again, it's not a good place to be. I really want to talk to Dad's haemotologist again.
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Dad recently diagnosed - waiting and anxious

Post by chris » 24 Apr 2012 11:50

Dear Nyanko

Very glad to hear that your Dad is feeling a lot better and not experiencing the temperature spikes now. Like Sarah, I would hope that your Dad might be offered counselling to help him come to terms with this diagnosis and find ways of dealing with it. Has your family been given contact details for a clinical nurse specialist as he/she might be able to arrange this?

You had said that your Dad's bone marrow blast levels were below 5% in both his January and February biopsies? The "100 Questions and Answers about MDS"* states that the threshold for MDS progression to AML is when the blast level is 30% or higher. (*Have you got a copy of this booklet? If not, do ask Sophie as it is very comprehensive).

So I suppose your key questions for the haematologist would be:
- what was his latest BM biopsy results re. the blast count?
- if the blast count has not yet gone to this level ( i.e. it is still MDS), what is the rationale for using chemo (if that is the intention) instead of Azacitidine when the latter is less intensive and generally better tolerated? Let's hope that the rationale isn't cost-savings - though since Aza was suggested initially, this doesn't seem likely. It might be another question worth asking though!

I do feel for you as you are not always in a position to be there when your Dad sees the doctor and your Dad really isn't inclined to ask the in-depth questions that you would like to ask (and relay the answers to you in full!). Another question might be around the specialist network that the local haematologist is accessing because, if he is already consulting with colleagues at QE, it might not be necessary to go through the challenge of getting a second opinion - which your Dad was not keen on? Also the logistics of going to another centre - travel time and costs - might be a consideration for them? It is understandable that you want your Dad to have the best possible care and it is his right to have a second opinion. What does your Mum think? Are you able to talk to her about it?

We all feel for you and your family at this time and hope that you have taken some comfort and support from the posts on this Forum.

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
Jayne
Posts: 194
Joined: 16 May 2011 11:33
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Re: Dad recently diagnosed - waiting and anxious

Post by Jayne » 24 Apr 2012 13:38

Hi

I might just add to the confusion because how I am being treated is different to what Chris said.

My blasts increased from 4.8% to around 9% and they are treating me as if I have AML (well as high risk of progressing to AML and they dont want that to happen so they are blasting me now so they haven't waited for me to get to 30%). Regardless my treatment is for AML.

However, the treatment is not just 10 days in hospital as you know because as you know from my treamtment it is 4-6 weeks, SO, I dont think they are treating him as AML if he is only going into hospital for 10 days.

Things are really not clear enough for you, and I suspect if your Dad cannot relay things to you in a clear way then they are not clear for him or your Mum. He needs to understand his illness and his options and he really shouldn't come out of hospital until he does. He needs to tell his doctors/professors if he isn't clear. Would he mind you speaking to his Doctor/Professor? You could ask for a telphone call, in fact if I was in your shoes I would be inclined to phone and explain that your Dad really doesn't understand the seriousness of his illness and ask for clarification. Hopefully as his daughter they will tell you. When my mum was very poorly a couple of years ago (encephalitis, she made a full recovery-remarkable) my Dad asked me to be present initially as he said his head was a shed (the worry clouded everything) and he thought it best to have me there to remember everything and ask sensible questions!! It would be really good if your Mum asked you to be present.

I really do hope you get to the bottom of this, tell your Dad he isn't being fair on you.

Once again I'm sending you lots of love and hugs, you need them!
Take care
Jayne xxx
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: 624
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Dad recently diagnosed - waiting and anxious

Post by chris » 24 Apr 2012 14:34

Hi Jayne and Nyanko

Yes, you are being given chemo before you are at the AML stage but this is all part of the pre-conditioning you are receiving to put you in the best possible position for your stem cell transplant - that's the goal of the chemo you are having i.e. it's not an end in itself. Patients with a lower percentage of blasts have better transplant outcomes so that's why I guess you are being given this treatment rather than straight into the "normal" stem cell conditioning - to make absolutely sure the blasts are at a really low level.

Just to add to the confusion, I notice on reading another bit of the 100 Q & A that different classifications have different thresholds and the WHO classification defines greater that 20% blasts as being AML! The 30% is the FAB definition (French American British). Wouldn't it be good if there was agreement on these things!!

I think in Nyanko's Dad's case, a stem cell transplant is not in the frame (?), so it's a question of what the most appropriate treatment is for the severity and stage of his MDS. As these treatments can have difficult side-effects, he really does need to be fully informed about the purpose, likely outcomes/benefits and potential side effects of any proposed treatment so that he can make an informed decision and, yes, it would really be good to be there when that diuscussion take splace as then you, your Dad and your Mum can all put your heads together about it, as happened with Jayne's Mum. Let's hope you can make it happen.

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
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 24 Apr 2012 16:03

Hi Jayne and Chris

Thanks for the thoughts. Jayne, I think Chris is right - your chemo is specifically the sort used in preparation for a bone marrow transplant, which is high intensity, so doesn't apply to Dad's case. Looking around, it seems that standard chemo can be used as a treatment for MDS/AML:

http://www.cancer.org/Cancer/Myelodyspl ... emotherapy

But I haven't seen it mentioned in many places, nearly everyone with high-rish MDS or AML that I've encountered online has had Aza or Dacogen followed by a SCT. It still isn't clear to me what the benefits of chemo are over Aza, although it's clear that the downsides in terms of side effects are more significant. Definitely need to ask more questions.

I spoke to Dad this morning - he had another small spike last night (38 degrees). The doctors don't seem massively worried about them, as he usually has just one a day now, which is resolved quickly with paracetamol. They don't seem to indicate any underlying infection. The main trouble is his neutrophils, which are still very low (don't know exactly what level I'm afraid, but I'm guessing under 0.5). He had a shot of G-CSF last week and is having another one today to see if it helps. Dad's climbing the walls at the moment, because he's desperate to be back home eating a proper meal and having a good night's sleep. But of course, he's too much at risk of infection for it just yet. Amazing how significant the mundane things in life become when we can't have them:(

I am going to call the clinical nurse and see if I can have a chat with Dad's haemotologist. Since he was willing to speak to me one on one a few weeks ago, I guess he might be OK to talk over the phone.
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