My father has Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))/Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) overlap syndrome and was diagnosed 2 years ago. The symptom that led to his diagnose was severe itching.
Just recently he has had to have a few blood transfusions due to severe anemia which has made him very breathless. He has noticed that when he is very low in red blood cells he does not have his itching. As soon as he has a transfusion the itching is back!
Does anyone know why this is happening and if you have experienced this is there anything you have been able to do/take to stop the itching?
This condition for him is awful. He is either very fatigued and unable to do anything or he has to put up with this terrible itching. There is no respite for him.
I would welcome any information that may help him.
It must be so difficult for your dad and must take its toll mentally and physically.
I have copied the @BloodCancerUK_Nurses in who maybe able to offer advice and I’m sure others will be able to share their experiences with you. Has your dad’s medical team offered any advice?
I’m sure you have lots of information but have included the links for bother the Myeloproliferative neoplasms (MPN) and MSD.
Please keep us updated on how you are both doing x
Up until a couple of months my dad was just on watch and wait. He has now had 7 blood transfusions. 3 of those were on the same day! He is also having weekly erythropoietin injections and is on water tablets as his legs have started to swell.
Last week he had a scan for his heart and kidneys which was done with electrodes. We are waiting for the results of those.
All this time he has only seen his consultant twice. his own doctor has been more help but unfortunately because of how rare this is they do not really know how to help him.
We have seen a dramatic decline in his condition in the last few weeks and his itching is off the scale today. Before this he was never ill a day in his life, so to just be able to sit around a chair is taking its toll mentally. He has done so well to cope with this itching for 2 years. Now he is also dealing with severe fatigue and breathlessness he is getting very down and we are really struggling to help him as we do not know if there is anything else he should be asking to try or whether this is unfortunately just a progression of this terrible condition.
Hi @SueM.
It must be so difficult to see him so poorly and not being able to help.
Do you think it would help if you could speak to the consultant. I wonder if this is something you could request?
The support line is so helpful and may be able to offer advice as they have the medical knowledge. Do you think it might help giving them a call?
I can tell it’s really taking its toll on him and it must be on you too. I hope you find this space helpful to connect with others and just to know we are all here to listen and support you as well x
I am sorry to read what your Father is going through. Itching is a symptom we often hear about and it can be really debilitating. We have created some information pages about this which includes helpful hints and also suggestions that can be taken to the treatment team - Itching | Blood Cancer UK. Please do have a read through.
You are also very welcome to call us if you wanted to talk things through in more detail. You can reach us on 0808 2080 888.
That information on itching is very useful. He has tried everything but the information about blood sugar is new so we will certainly keep and eye on that.
His GP actually called him this morning as they had been notified how unwell he was when he had his 2 x transfusions on Friday. They are upping his water tablets and he is going to have a call with his consultant on Friday. He will not allow us to be around when he has these calls which is also quite frustrating as would would maybe ask more questions than he does and press for more detail!
@SueM It is so difficult when your dad won’t allow you to be around for appointments isn’t it, I do not know what the answer is.
Please do let us know how this week goes.
How are you doing?
Please do look after yourself as well as you are looking after your dad,
Take care.
Yes, I have commented before on here about how difficult it is for us when he will not let us attend appointments or be present for phone calls.
I am doing okay but this makes an already difficult time even harder. I am not only trying to help my dad, but I am also trying to help my mum through this who is obviously finding it incredibly hard and very frustrating too. She is one who bears the brunt of his low mood and anxiety about it all, yet he will not let her in!
He also very old school and does not want to bother the doctor until it gets to the point where he is very unwell and then he complains that he can not be seen. We all now recognise when he needs a transfusion but he does not seem to or he does not want to accept where he now is with this. We feel he should now be pushing for a regular transfusion so we just hope he does discuss that with his consultant on Thursday.
Thanks Erica, The support on this forum means a lot. X
Hi SueM,
I am sorry to hear that your Dad is having such a hard time.I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap four and a half years ago - after two years of tests. My Myeloproliferative neoplasms (MPN) is Essential thrombocythemia (ET). I have been so lucky with the support that I have received from the Haematology team at my local hospital. We have several specialist nurses who are always on hand to answer any questions. Perhaps your hospital has some who could help you. I have weekly Aranesp (EPO) injections to control my anaemia and hydroxycarbamide to deal with the platelets. it is a constant battle to keep the balance right. During the last four years, I have had an embolism in my aorta, pneumonia which left me with heart failure, Graves disease and a fractured hip which kept me in hospital for two months. I am 81 years old and still living on my own. I hope that my story gives you hope. My daughters have been a huge support since I lost my husband, as you are to your parents.
My doctors have been very keen to have my family to every appointment, so I can see how difficult it must be for you Keep strong for both your parents and keep in touch - we are all here for you. Very best wishes, Kate x