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
Many thanks for the reply and sorry for the late reply.
My dad has become very unwell and I feel so frustrated that he has not let us help him or pushed for more advice and treatment.
I feel he is in complete denial about it all.
He has had 5 blood transfusions since I last posted and he is having to have another 2 x blood transfusions today after spending most of the last week in bed. If I had not called the doctors surgery myself and explained the situation he would not of even been getting those today.
My mum is beside herself with worry and also very frustrated with my dad. He is such an immovable force, even when it is to the detriment of his own health.
Hi SueM, I am so sorry to hear what a hard time you are all having. Is your Dad still on the EPO injections? Have they increased the dose? Is he being treated for the Myeloproliferative neoplasms (MPN)? My haematologist admits that it is very hard to treat. I was on the verge of needing a transfusion, but she doubled the strength of the injection and today, my blood count has gone up enough to keep her (and me) happy. Have you contacted the haematologist? or specialist nurses? It is so hard to be without proper support. Keep in touch with us all. With very best wishes Kate x
They have stopped those injections as they were not doing anything for him.
He is home now after his transfusions and he looks awful and has gone back to bed. He is getting a call from his consultant tomorrow and I offered to be there for the call to help him get more info but he refused.
I really hope they look at giving him a regular transfusion slot every week as he is now having to have them every 2 weeks but it is not planned, it only happens if it becomes an emergency which does not make sense to me. I think he is at the point where 1 a week would be the better option. When he has been getting his he has been in with people who are on that weekly option. I have told him to ask his consultant about that so I really hope he does.
If nothing changes after the call tomorrow and I will try and contact his consultant myself. I may not get anywhere but I think it will be worth a try.
Everyone’s support means a lot and it is great to have a place where I can talk about our situation.
I know the Overlap Syndrome is a very difficult one to treat, but it is made even more so by not being able to help my dad like we want to.
If I had not pushed our doctors surgery about the condition he was in he would not have been getting his transfusions today and I just worry that by him not letting us be part of his consultations, he is possible missing out on us pushing for additional treatments that may be available to him.
Yes Sue, if you explain your problem to him, hopefully, he will tell you what’s going on. I’ll be thinking about you and wishing you well
Let us know how you go on. Kate xx
My dad is going to get a Bone Marrow Biopsy on Tuesday as they have now realised the blood transfusions are not working.
I am happy that they have realised this but also worried about what that may mean for him. X
Hi Sue, good that something positive is being done for your Dad. I will be thinking of you all this coming week and hoping that the biopsy will help get some new treatment sorted.I know that nothing can stop the worrying for you all.Just keep supporting your Mam and Dad and being there for them .Keep in touch because so many of us understand what you are going through and want you to feel our support. Kate xx
My dad is going for his bone marrow biopsy today. I have sent my mum with a list of things to ask whilst he is getting his procedure done. I have also told her to tell them all his latest symptoms and to let them know that he does not tell us anything.
I have my fingers crossed the procedure goes okay. The last platelets reading my mum has been able to find on his letters is 46 which I know is quite low for this procedure.
They completed the procedure and did some more blood tests also.
The consultant also examined my dad and found that he has an enlarged spleen. (That explains why he has not been eating very much).
My dad got a call first thing this morning asking him to go back tomorrow morning for another couple of transfusions so I presume his level was quite low.
We have to wait 10 days for the result of the biospy. I have no idea what may happen after that!
My mum never got a chance to speak to anyone as they were 1.5 hours late for the appointment due to traffic issues. My husband is taking him tomorrow as my mum is exhausted, so he will hopefully be able to see someone then
