I am so glad I have found this forum and I hope I can get some advice.
My father had just been diagnosed with Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome. This is a very rare condition and I am finding it very hard to find any information at all online.
Here is the timeline so far -
I noticed my father was losing a lot of weight and then he started with uncontrollable itching. I made him go to the doctors and they ran blood tests. The blood tests showed that he had too many white blood cells and not enough red blood cells so I already suspected this was some kind of blood cancer. This was August. At the time the doctor said they would need to run further tests but in the meantime they would try to control the itching by putting him on antihistamines and giving him some creams. These did not help at all. He has been unable to shower or sleep properly all this time and it is driving him crazy. Since then he has also been prescribed antidepressants which are not helping either. On the 22nd September my father had a telephone consultation with a blood specialist who told him that he was going to have to go for a bone marrow aspiration as the blood results were inconclusive. When the results came back from this he was told that his bone marrow was fine but they would need to send off a blood sample to look at his DNA. On the 29th December he got a telephone call from the consultant and they told him he had Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome, they would see him in 6 weeks time and that he should get a blood test from his GP practice before this meeting. He wrote it all down wrong and told me it was MDF/MPM. He was not told what this actually was. I googled it at home and found out exactly what it was. (I did not mention anything to my parents as I did not want to worry them as I may have got it wrong and told myself that if he did not have to see them for 6 weeks then I was maybe not as serious as I thought) I was shocked that he was told this way, that it was not explained to him properly and that he had to wait a further 6 weeks to actually see his consultant face to face. On Saturday he received in the post a book about MSM and a book about MPN and an accompanying letter from his consultant that said he could not locate any information to send him about the overlap syndrome. Until this my parents had no idea this was blood cancer and are now obviously very upset and worried. They now have 6 weeks to wait until they can get some proper answers.
I am hoping that someone on this forum may have also been diagnosed with this condition or someone may know where I can go to to find out more information.
I would like to know if we should start to push for answers before he sees his consultant in 6 weeks and what sort of questions we should be asking at this meeting.
My father is a very fit and active 70 year old who has never been ill. He is not very computer literate which at the moment is maybe a good thing!
I really hope someone out there can help. This has been going on since July and the itching and lack of sleep are very debilitating. It is the worst at night but can happen at random times through the day also. It is horrible to see him suffering like this. I just want to try and see what treatments there may be that may be able to help. We know there is no cure for this.
Hi @SueM, thank you for taking the time to share what’s being going on for you and your father, and a warm welcome to the forum. It sounds as though it’s been an understandably difficult time for you and your family, and I’m so sorry to hear this. I can appreciate your parents are feeling worried and upset and it’s certainly tough having to wait when you have unanswered questions. May I ask how you’re coping? It must indeed be awful seeing your father dealing with such troublesome symptoms. Would you like to talk things through with our Support Team? Please do call us on 0808 2080 888 if so.
I would say it’s certainly understandable to want to know more at this stage. May I ask if your father has been allocated a Clinical Nurse Specialist (CNS)? When first diagnosed, a keyworker should be allocated (usually a CNS) that serves as a first point of contact for any concerns around the person’s diagnosis/care. If so, it may well be worth giving them a call to talk things through. If not, I’d encourage you/your father to ask about this by getting in touch with his team’s secretary (usually there’ll be a number for them on a clinic or appointment letter).
Whilst it might be useful to have both an MPN and Myelodysplastic syndrome (MDS) booklet, your father’s consultant should ideally help him to identify what information within these is relevant to him.
I appreciate it must be tough for everyone to be processing this news right now, particularly if things were not explained properly as you mentioned. Please don’t hesitate to give us a call, Sue, if it’s easier to talk things through over the phone (Blood cancer information and support by phone and email | Blood Cancer UK). We’d be happy to support you however we can.
Thank you so much for the prompt reply, it much appreciated and I thank you for taking the time to send your very comprehensive reply.
My father does not have a CNS at the moment he has just had contact from his GP and the consultant who has been dealing with trying to get to the bottom of his blood results.
My father does not get to see his consultant again for another 6 weeks. All he does know is it is an overlap syndrome and it is very rare. He has no specifics as to what elements of each part are relevant to him and I guess that is why we are struggling as to what happens next and what questions he should ask when he does see him.
I will have a look at the links you have sent and that you for the contact number. I am sure I will give you a call once I have had a look at that.
I’m glad you have found us & I can appreciated how concerned you must all be. Oddly enough I was diagnosed with MPN ET & Myelofibrosis in exactly the same way over the telephone a few days before Christmas 2021. Again like your dad was given next to no information or actually told then I had cancer. I had been pushed from doctor to doctor to actually get a diagnosis after being extremely unwell for the last 2yrs & in & out of hospital with chronic anaemic which they kept trying to put down to my periods. The consultant sent a booklet which took around a month to receive but in the mean time I found my own research from @BloodCancerUK & MPN Voice. I was then given a bone marrow biopsy to confirm everything against me being Jak 2 positive. May I ask if you know if your father is Jak 2 positive? Once all the diagnoses were made I was given a regular consultant haemotologist & a clinical specialist nurse. Hopefully once your father has had his appointment things will fall into place better & you will get the information needed. Try not to worry & stress to much & take comfort that your dad is fit & active as this will be key to his ongoing treatment & journey. Always here for any questions you may have. Take good care
It is awful that you also found out about your diagnosis in a similar way. I have read many posts like this which is very saddening.
Over all this time and the tests he has undergone, not one of the doctors he has met has mentioned cancer at all. I obviously looked up his symptoms etc online and knew where this was potentially leading so I was almost prepared for it, but I was still hopeful it was not cancer as the doctors had not mentioned it. It turns out this is very common and I do not know why. We all know that when we go for a mammogram it could be cancer and we have time to prepare ourselves. It does not seem fair at all to find out by receiving booklets rather than face to face appointment. My father has spent so much time waiting for results which is very frustrating and now he has to wait another 6 weeks to actually speak to someone.
Thank you for your positivity with regards his appointment. We really hope he gets the full diagnosis then and there is a plan for some kind of treatment to manage his symptoms.
Thanks again for taking the time to reply. It has really helped x
Hi @SueM, from what you say you are all in shock, scared, confused, frustrated and the waiting is the worst.
You have entered into a world that speaks a foreign language and that you are waiting for tests, results and appointments. @TanyaBloodCancerUK and @JoJoflowergirl have given you good responses.
I would suggest that your father keeps a diary of events, the symptoms, their severity and effect on him and his life for his appointment.
The first half century of my life I was so, so healthy, I was diagnosed with another blood cancer at 53yrs old, that was 19 yrs ago.
If any of you would like to the Blood Cancer UK support line do ring them, they are lovely
A lot of our blood cancers are treatable, but not curable and we learn to live with that fact, but it takes time.
Waiting is horrible but be kind to yourselves and really look after yourselves and please keep posting.
That is a perfect description. It is a new world and one we do not understand. It is so good to know that there are people like yourself who are happy to pass on advice from their own experiences with blood cancer to help those newly diagnosed and just starting this journey.
It is also comforting to know that there is a support line which we can call if we need too. I am so happy I found the Blood Cancer UK page and now have access to this forum which I know will be a huge help as we navigate this challenging and worrying time.
The diary is a great idea and I shall pass that on to my father.
Thank you so much for your response to my post. @TanyaBloodCancerUK, @JoJoflowergirl and yourself have already helped ease my worry. It does make a huge difference when you know you are not on your own and help is only a call or written post away. x
Hi SueM. I also have an MPN and an Myelodysplastic syndrome (MDS) please stick with the sites suggested above and possibly the Lukemia site for Myelodysplastic syndrome (MDS). I googled it all and that was a huge mistake.
If you have a number for the consultants secretary they may be able to get you a CNS ahead of your appointment.
My general advice is to write down your questions ahead of your appointment. I forgot loads.
I recorded the appointment as the mind plays tricks on what is actually said.
Make sure your farther has a full blood count taken at his GPs at least 2 working days before the appointment. I assume that is the blood test mentioned.
Finally dont panic. The cast majority of us continue a high quality of life for a long time. My consultant said I would die with this not of this when I was 58.
Yes, I made the mistake of going to Dr Google and that was very worrying. Thank goodness I found this forum.
My father has now got an appointment with a dermatologist on Wednesday which may hopefully help with the itching.
He is also going to have a spinal scan next Saturday and has organised a blood test for before he goes to see the consultant.
That is a good idea about recording the appointment. I am sure he will have to check if that is okay first so I will make sure he has a pad and pen just in case!
We are also putting together a list of questions to ask.
Thanks again for the response. It is reassuring to hear from someone like yourself who has been diagnosed with the Overlap Syndrome and that it possibly may not be as bad as we have seen on Google.
I think that was the most shocking part of all of this. As soon as you search for the Myelodysplastic syndrome (MDS)/MPN Overlap Syndrome online you are met with the words - The outlook is not very good, and then as you dig deeper you find these life expectancies for the various types (none of which are very long at all) and you automatically start to think that you have very little time.
I have realised via this forum that this may not necessarily true and that has given me a great deal of hope. I think hope is what we need to power our minds to get through this.
Hi
I have had a high white blood count for several years and was told this was not leukaemia and discharged sometime after. My bloods were not changing so my GP referred me back again a few years later. A haematologist then referred me for a bone marrow biopsy which confirmed I did have a very type of leukaemia and it’s called chronic neutrophilic leukaemia CNL this is a very rare type and I was then referred to a professor at Guys hospital in London who generally I see twice a year but since the pandemic I’ve not seen her for 3 years however I do have regular blood tested every 3 months at my local hospital. I do not currently know anyone else with my condition but through this group and MPN group I have discovered there are quite a lot of overlaps with other blood conditions. I also have MGUS not sure what this stands for. I think I would appreciate to have contact with someone with the same as my condition just to be able to message each other so maybe that is a possibility for your dad at some point. Anyway good luck and hope he gets his questions answered soon. Also at my first consultation I took my daughter in with me and asked if I could tape the conversation and it was agreed. I found this very helpful so maybe you could arrange the same.
Dear @SueM
Thank you for sharing your Dad’s story so far and I can see you have received some excellent advice and guidance.
I wanted to add some advice from our colleagues at MPN Voice regarding the itching which can be so challenging: Itchy skin – MPN Voice
I would also advise, when you are seeing the Consultant, that they give you access to the CNS phone number and out of hours number so that you can report any issues at any time. This will ensure you have a point of contact and can be very reassuring. I would add that recording the consultation would be worth asking about as there is so much to hear and understand.
As my colleague @TanyaBloodCancerUK mentioned, do call us when you are ready and we would all be happy to support you and your Dad through this.
Kind regards
Gemma
Hi SueM,
I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap in late 2020. I think that I had had it for some time before a locum Dr. picked up on my blood test and referred me to a haematologist… A bone marrow test and further tests confirmed the diagnosis. Life is a bit of a roller coaster . In August 2921, I collapsed due to low sodium levels and had a week in hospital after which my platelets went up to over 1000. I was given hydroxycarbamide and in 2022, I was rushed into hospital with pneumonia which has left me with heart failure. .Now my platelets are just above normal and I am on weekly injections of Arenesp which help to keep my anaemia under control. I am very fortunate as I have had face to face appointments throughout my illness and have really good nurse specialists. They arranged for me to have anti virals when I had covid last November… I have been given the booklets and seen all the figures, but I tell myself, that they are only averages. I am now 79 and live on my own as my husband died from prostate cancer in 2009… My daughters both live 200 miles away, but they come up to see me quite often and I stay with them from time to time. This is a very rare disease, but clinical trials are going on … I echo DougW in saying - don’t panic.
Best wishes Kate S
I am sorry to hear you are also going through this.
We will hopefully get some of the answers we need when he sees his consultant.
Thanks for the tip about recording that visit. Someone else has mentioned that also and it makes perfect sense, as it will be good to be able to play it over again to hear bits you may have misheard or missed completely.
Thanks again for getting in touch, it really does help to know we are not the only ones going through this and to know that there is support out there.
Yes, the advice and guidance has been amazing and has made such a difference to how I am feeling about all this.
Thank you so much for the link. At the moment it is the itching that is so stressful to deal with. We feel so helpless. My dad has always been so strong but to see him struggling mentally as well as physically with this is heartbreaking. It would be hard enough to deal with this diagnosis without the itching, but this just adds an extra level of difficulty. We feel that if we could get the itching under control he would be in a better place mentally to deal with the rest of it.
Thanks again for the help and support. It means a lot x
I think my dad may have had this for some time also. He had been losing weight and slowing down a bit but I just put it down to the fact that he was 70. It was only when he started to itch that he went to the doctor and this was only because I pestered him to. At the time it was not too bad but bad enough to make him mention it to me, so I knew he should get it checked out.
I am so sorry to hear everything you have been through but also want to thank you for sharing your story with me so I have some idea of what may be ahead.
It is also reassuring to hear you have received some excellent care. I hope that once my dad has seen his consultant he will be given the same level of help.
It sounds as though your daughters have been a good support to you and I really want to do that for my dad too. At the moment I do not think he is that aware of just how serious this can be. I am glad I am slightly ahead of the curve as it is giving me time to process it all so that I can be the strong one for both of my parents. I just worry that I may not be as strong as they need me to be.
I am really trying not to panic and the advice and guidance everyone has given me on this forum is really helping.
I hope you can continue to keep everything under control with the medication you are currently receiving. x
