Dad recently diagnosed - waiting and anxious

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

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Karen

Re: Dad recently diagnosed - waiting and anxious

Post by Karen » 18 Jun 2012 12:50

Hello Nyanko

Some of the points that you raised in your recent post really struck a cord. My father has been also feeling down, I think that it feels like everything in his life revolves around the MDS at the moment, plus the near constant fatigue.

We've been a bit frustrated lately by the lack of any progress at all in his treatment - he seems to have been left to struggle on with transfusions (whilst the treament advice he receives differs at each appointment). However, there is some light ahead as he is seeing a consultant today regarding his commencement of Azacitidine and iron chelation, and if we can just get him less transfusion dependant that will be a result for us. At the moment his Hb and platelet counts are dropping, and he is exhaused just a few days after receiving blood.

I hope that your Dad's treatment brings him some relief. Maybe once he's in hospital and in a routine he may feel a bit less down. I understand what you mean about the cat - something like that is sad at the best of times, but at the moment may well be amplified by everything else.

Thinking of you and your family.

Chris - I tend to refer to my Dad's MDS as a cancer and to the Azacitidine treatment that he may be about to undertake as chemo. If we refer to it as a bone marrow disorder it doesn't really convey the seriousness of the condition and we need more awareness, support and understanding.
Nyanko

Re: Dad recently diagnosed - waiting and anxious

Post by Nyanko » 27 Jun 2012 18:15

Hi all

Well, given the downward trajectory of pretty much all my postings so far, you probably won't be surprised to hear that Dad's haematologist told us last Friday that the first round of chemo didn't really work, so he has decided to abandon treatment and move to supportive care only. In other words, we have reached the end of the road. We're hoping to get an appointment with a consultant at the Queen Elizabeth in the next week or two, but unless he can pull something new out of the bag (since Dad's doctor has no suggestions and is resistant to the idea of Aza at this point), Dad truly has no hope.

I've beeen bracing myself for this for a while, but it's incredibly painful. Dad is still active, eating well, getting on with life more or less as normal... we can't believe he's been given this death sentence.
janetstanford
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Re: Dad recently diagnosed - waiting and anxious

Post by janetstanford » 28 Jun 2012 15:18

I am so sorry to hear this news and i do feel for you and your family
i can relate to your dads cancer and do understand what he is going through at this time ...you say his doctor has run out of options and azactine is not a choice is this because it is a growth factor and would this increase the amount of cancer cells ....
i do hope when you see the other doctor he has other choices for your dad and can suggest a treatment which may help

so sorry thinking of you all
Janet
Jayne
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Joined: 16 May 2011 11:33
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Re: Dad recently diagnosed - waiting and anxious

Post by Jayne » 29 Jun 2012 11:50

Hi Nyanko

Just to say I was really sorry and sad to read the latest news regarding your Dad. It's a cruel disease.
I am thinking about you and sending you lots of hugs. You have been amazing through this, so strong.
Lots of love and hugs

Jayne xx
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.
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 » 04 Jul 2012 22:02

Hi Nyanko,

I just wish to echo what Janet and Jayne have posted previously; I am truly sorry that the medics have given up on your Dad.

Having been involved with the nursing of my late mother-in-law, and my brother-in-law who both died of cancer in their own homes, my only advice is to try and assume some sort of normality in what is clearly a very abnormal situation. The time that your Dad has left is naturally very precious to you all, and the important thing is that the medics offer good palliative care to ensure that he is out of pain and has some quality of life for the time that he has left.

My love and best wishes to you all.

Sarah x
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.
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Dad recently diagnosed - waiting and anxious

Post by chris » 09 Jul 2012 18:27

Dear Nyanko

We are all truly sorry to hear this news and "giving up" on treatment from the medical team can feel like such a defeat. Hopefully, as Sarah says, you can carry on and support your Dad to continue to live "normally" for as long as possible without the disruption and sometimes discomfort which treatments themselves can often cause. Better now that you spend quality time with him where he is at ease and happy than hanging around hospital waiting rooms.

Thinking of you all.

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 » 25 Jul 2012 15:26

Hi everyone

Hope we are all enjoying the sunshine.

Well, it's been a suprising week - Dad got his second opinion at the QE on Monday. Long story short, the consultant felt that with Dad's age and disease history, there would be no treatments that could reasonably be pursued that were more likely to do him good than harm. So, we are still on supportive care only.

That being said, we had a MASSIVE surprise when the Consultant rang up Dad's hospital to enquire about his bone marrow biopsy history. Apparently the most recent sample from mid-June showed 2.8% blasts (down from 19% when he started chemo at the end of April - so he was only just on the border of MDS and AML then, which I didn't previously know). My jaw hit the floor! I asked him if that was definitely what they said, and he rang them again to confirm it. Now there's only two possibilities here... one, the actual figure is 28% and they recorded it wrongly (which would be VERY bad practise for a hospital, so I would hope it's not very likely), or two, the chemo essentially put Dad's AML into remission by turning it back into MDS.

The consultant said the blast count would most likely increase again over time and the leukemia would return, however, it could be anywhere from three months to a year, maybe even longer if we're lucky. So basically, we are still up against a ticking clock... but it could be that it has been re-set for at least a while:)
Sarah Reakes
Posts: 76
Joined: 11 Aug 2011 17:51
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Re: Dad recently diagnosed - waiting and anxious

Post by Sarah Reakes » 25 Jul 2012 17:34

Hi Nyanko,

Wow, that's great news. You can really tell from your posting that this wonderful development in your Dad's diagnosis/prognosis has lifted your spirits. Let's hope that the chemo have zapped the little blighters into remission and that the 2.8 blast count is correct. It would be wonderful to think that the chemo was successful; it really does give you something to hang on to. Miracles can happen.

Best wishes to you all, and keep us posted.

Sarah x
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 » 16 Nov 2012 22:15

Hi everyone

Hope you are all well. Just wanted to pop in a give a quick update. On the whole Dad was doing OK for the last several months - he had a couple of brief stays in hospital in September for suspected infections, but other than that, he mostly managed alright on his weekly transfusions. Well, I say alright - he was getting weaker over time, but he got on better than I thought he would. The last time I saw him really happy was at the start of October, when he and mom had a day at a safari park and he discovered a hitherto unknown love of hippos!

However. Only a few days later, he ran a very high temperature, and ended up in hospital with a persistent infection for most of October. Since his release, he has visibly declined. His weight is down from 15 stone to 11 and a half (not good for a 6'2" man), and he is struggling massively with breathlessness (a new symptom in the last month) and fatigue, as well as other problems that come and go. He now needs a wheelchair to cover distances longer than one end of the house to the other. He can't reconcile how he is now with how he was a year ago, and is terrified of what's still to come. And me? My heart is breaking for him, but I've reached a place of strange calm, that I suppose comes from the overwhelming sense of inevitability. I don't know.

At any rate, our greatest hope right now is that he is with us for one last Christmas. But he has a blood clot on his lung, which is obviously very serious, and the doctors have warned us that his next infection could be the last. Please keep everything crossed for him.

x
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 » 20 Nov 2012 11:37

Dear Nyanko

Glad to hear that your Dad has had a few good months before his latest bouts of infection and progressing weakness. Of course, we are keeping everything crossed for him to avoid any more infections so that your wishes about Christmas can be fulfilled. I am glad, too, that you seem to have reached a place of calm about all that has happened this year and what is to come. I'm sure that will help your Dad and Mum, too.

Take care

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
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