MPN is indeed a hidden illness and not something that is obvious unless you suddenly bring it up in a conversation that you have a (Blood Cancer) after that may fall on deaf ears and conversation ends. It’s hard to explain to people how tired and down in the dumps you sometimes feel without seeming to be moaning. Ive had MPN since 1991, (32) years and sometimes I feel that I have to keep it to myself. I have a lot of other problems and not sure how related to MPN they are. It was so good to get this off my chest. My husband has had Dementia for over four years but physically he’s as fit as a fiddle, but I think as long as his dinner is on the table and his clothes are washed life goes on. Anyway good luck everyone and keep your chin up, it was so good to get this off my chest.
MPN Blues. : MPN is indeed a hidden illness and... - MPN Voice
MPN Blues.
Feel free everytime you feel low to have a rant I also feel bad at times. Sending you a big hug
It is always OK to unload here on the forum. It is one place where people understand. It is often hard for people to understand what living with a MPN is like. We usually do not "look like" we have a type of cancer. Symptoms like fatigue, headaches, erythromelalgia are not easy for people to discern. I find it helpful to educate people about MPNs. They can either choose to understand or not. I do not trouble myself with those who choose not to understand. That is their issue, not mine.
It is not surprising to hear that you have a variety of other symptoms and issues. Some likely are related to the MPN. The deregulation of the JAK-STAT pathway does more than cause the overproduction of blood cells. We are more prone to other neoplasms. it also causes the overproduction of inflammatory cytokines, which is thought to be responsible for many of the secondary issues we experience. The body is an integrated system. That is why holistic care is so important when dealing with MPNs or any other condition.
We were diagnosed about the same time. I was originally diagnosed with ET. It progressed to PV about 10 years ago. Despite some challenges with the MPN and non-MPN issues, I have lived a good life and continue to do so. Wishing you success in your MPN journey.
Hi Hunter, the font of all MPN knowledge! I have never completely understood what I've got because everyone talks about ET, So I assumed that's what I have, but it isn't. I have thrombocytosis along with myelodisplastic syndrome(s). I found out that having T has a worse prognosis than that of ET, so I'm wondering if anyone, like you, for instance, knows anything about the progression of MDS(RARS)Thrombocytosis, with platelets not much over the range and all controled with aspirin (and erythropoietin injections). I have fibromyalgia, osteoarthritus and five compression fractures, the possibility of thyroid problems as well, so I couldn't pin point the cause of my RARS/T symptoms. Bone pain? What's the difference?
Thanks for the kind words, but not sure that "font" applies. Just a guy with a MPN who has learned a bit.
For anyone who has not seen reference to what you are asking about. Ring sideroblasts (RS) are erythroid precursors with abnormal perinuclear mitochondrial iron accumulation. Two myeloid neoplasms defined by the presence of RS, include refractory anemia with ring sideroblasts (RARS), now classified under myelodysplastic syndromes with RS (MDS-RS) and RARS with thrombocytosis (RARS-T); now called myelodysplastic/myeloproliferative neoplasm with RS and thrombocytosis (MDS/MPN-RS-T). ncbi.nlm.nih.gov/pmc/articl...
I have seen a bit about MDS/MPN overlap in the past, but it is not something I know much about. RARS-T apparently now goes by the classification MDS/MPN-RS-T . This is a condition that has its own base of research. Here are couple of more recent articles.
nature.com/articles/s41408-...
austinpublishinggroup.com/h...
The bottom line is that MDS/MPN-RS-T is its own distinct disease entity. It has its own prognosis and treatment protocol that is not the same as ET. Suggest that you review the more recent literature and develop a base of knowledge. This will lead to a list of questions you can the to a hematologist who has the competence to answer your questions.
There are also some videos to provide a primer.
onclive.com/view/mds-mpn-rs...
The FDA has approved approved Reblozyl (Luspatercept-aamt) for second-line Treatment of anemia related to this condition.
ascopost.com/issues/april-2...
I hope that helps you on the path to answers to your questions. As you do more research and speak to your care team, you will become the expert in MDS/MPN-RS-T. Before long, we will be asking you questions.
Thank you so much for that, Hunter. I looked at all the links you provided, and they clarify such a lot. It's just a pity there doesn't seem to be much research coming out of the UK.
I was told they hadn't found any mutated genes but I had not been aware of SF3B1 and I'm wondering if it might apply to me. I'm not sure I'm getting much benefit from erythropoietin injections (there is a little increase in the haemaglobin count) and I have never had a transfusion. I do have mild symptoms, like lightheadedness, but I think I had the fatigue, long before diagnosis because of fibromyalgia. My platelets are not much above the range and I'm beginning to experience imposter syndrome!
You have a very complex case. The disorders certainly overlap given that the body is an integrated system. This is why it is so important to create an integrated treatment team with the right kind of specialists involved. MDS/MPN-RS-T is a rare condition. Very few doctors know much about it. The bottom line is that you will likely need to develop your own expertise in order to effectively manage your own care. We often need to be our own case managers and advocates.
I think I would start by reviewing the genetic testing that has been done to see what was tested for. I would want to ensure that a full panel of the driver and non-driver mutations was done. Suggest not making any assumptions without reviewing all of the testing done.
There are other treatment options if the EPO injections are not effective. I know that Luspatercept-aamt is one option, but do not know enough to know whether it is an appropriate option. I would assume that the anemia is contributing to the fatigue along with the with the fibromyalgia. This is a conversation to have with the MDS/MPN Specialist and the Rheumatologist following the fibromyalgia.
I certainly do not think you are at risk for imposter syndrome. You do have a complex case that will be a challenge to sort out. Wishing you success in doing so.
Big hug to you, Hunter. I will, at some stage, talk to the MacMillan nurse at the Haematology Department and ask her to review what was done. I was told they didn't find any genetic mutations.
I have never had a follow-up on any of the other pain inducing conditions and am not sure how to start this conversation with my GP (I haven't seen him for about two years; they've allocated a pharmacist to deal with our medications but I'm not impressed). What I do know is that I've started to get the loud pulsing in my ears that I had that lead to my anaemia diagnosis, and it's often the result of my getting upset by my partner. I had a good night's sleep but have had no energy since the ambulance took him away this morning - after the way he treated me in front of the paramedics. It was all a pantomime again. I don't think I can continue to take care of him and myself when he's quite capable of taking care of himself. Sorry. Rant about a rant. I don't know whether his behaviour is doing me any real harm i.e. making the blood cancer worse. It's not doing me any good, that's for sure. But I don't think this complex case can ever be "sorted out". All blood cancers are a challenge and most can only be "treated".
I would suggest that you get a copy of the genetic report and review it yourself. We really need to have direct access to all of our reports and labs to manage out care properly. This is a fundamental patient right and a responsibility we each have.
Sorry to hear about the way your partner is treating you. I recall that he has his own serious health conditions. Still, we all need to best we can to take care of ourselves. Managing diabetes can be very difficult at times. It requires proper self-care. I hope he will receive better care in the hospital this time to support a recovery.
While your GP should be a key component of your care, much of what you describe is beyond the scope of practice for a GP. The GPs role should be to help you access appropriate specialist care and to help coordinate care needs. Perhaps the starting point for the next conversation is how the GP can help you access the care you need.
It may be that you need consultation with a Pain Specialist in addition to a rheumatologist to treat the fibromeralgia. I am not sure what you are using to treat the fibromyalgia pain. I do know that there are treatment options like Duloxetine (Cymbalta), milnacipran (Savella) and pregabalin (Lyrica). You would need to consult with a doctor with fibromyalgia expertise to determine what is appropriate for your rather complex case.
I think the main thing is to not suffer in silence. There likely are treatment strategies that can help. You will have to advocate for yourself to access the care you need. Would suggest taking advice from Yoda. "Do or do not. There is no try."
Wishing you success and all the best moving forward.
Do or do not; there is no try. Indeed, this is one of my favorite sayings and I'm always advising others that way.
But - do you know - I have never been offered or even considered that there might be a proper medical report! My diagnosis was scribbled on a scrap of paper; I was told that MDS is caused by a gene mutation, and I was recommended to read the book on MDS and to join this forum. I thought MPN was something lesser than MDS, and I still think that way because my symptoms didn't lead to its discovery and the platelets are not too high. As I began to understand more about MDS I asked about the mutations and was told I didn't have any! My bloods have never gone "downhill" so I have stopped worrying. I have attended all the sessions at the Pain Clinic and I no longer know what exactly causes me pain, only that I don't suffer so much as I used to. I take Pregabalin but not for fibromyalgia! I wouldn't be without it but on a low dose, I have to take other pain killers such as Tramadol or Paracetamol. The problem with Pregabalin is if you for any reason run out of it. It is truly horrible.
I don't know of any doctors with fibromyalgia experience but you are right; I do have to speak to someone who can treat me holistically. I feel as if I've been dumped in the deep end of a pool without a swimming lesson. It's not the fault of any of the doctors but I need a good hour - not ten minutes - to discuss all of this with a knowledgeable practitioner.
Yes, my partner has his own problems but he is not taking care of himself the way he should. No-one is looking at his mental health, other than doing the odd scan and saying "it's clear" and it is only paramedics who see how he is behaving, and they can't do anything to help the situation. All they can do is find a reason to cart him off to the local hospital. There's no sense in all of this; I have to shout to be heard, and this morning, with the ambulance men talking so loudly as well, he told me to stop shouting! The ambulance men didn't even need to talk loudly because their voices are at a pitch that he can hear.
Oh dear, I meant to go to bed early. I must make a plan of action that will work while I have a day or two to myself. Thank you so much for your help. No doubt we will chat again soon.🤗🤗 Maggie
Thank you Hunter - as ever your post on s a voice of reason and well-balanced. MoNut pinpointed succession nctly thé fatigue and despondency I go thru at times as well.
Thanks for writing this, indeed the variability from day to day/week to week can be a challenge as well. Some days I can go out and ride 50 miles on a bike, the next week I would struggle to get out of bed and do anything productive. Fortunately my husband and work are very understanding about everything. I've only been diagnosed this year, but believe it could be at least 20 years since I've had symptoms - and potentially the mutation happened way before that.
I hope you are also getting (and accepting) help with your husband, as partners with dementia can be extra tiring. Please look after yourself. sending hugs 🤗
Rant away, this forum is particularly helpful and understanding of what each of us is going through. I also find it particularly hard to talk to family and friends and outwardly put on a brave face, people going through similar just get it. Sometimes I am really crumbling on the inside and I find journal writing helps with my venting. Stay strong but be kind to yourself . Penny
sending hugs. Ughh. Thank goodness for this group xxx
Glad you are feeling better after your moan, I agree with you, nobody seems to notice our illness, I am a carer also, but mention to anyone that you are under par and it falls on deaf ears. If there were physical signs it would be different. In twelve years since being diagnosed, I can't remember one person asking if I am ok. It does get you down at times, so have a good moan on here and feel better.
Ditto, ditto. It can be a lonely place as we appear alright on the outside. I relate to a lot of what you are saying. You are not alone, and thanks for posting and reminding us all that there are more of us here in the same boat
Yes I often wonder how other people cope on their “off days”.
Hi, I’m really glad that you feel this is a safe space to share how you feel, it’s so important. I have support around me but of course no one really knows how it feels to have an MPN except the people who have MPNs! I really understand you feeling that you want to talk about it but don’t always actually want to talk about it (if that makes sense?!). We are all here for you if and when you feel the need again…take care x
Thank you for posting this, it’s very healing to know others feel this way.
it is a lonely disease to have thats for sure! I went and had a chat with a Macmillan nurse the other day because I was low and about to change treatments and she said I was entitled to see her because duty of care applies to us mpn sufferers as well and she also said she felt it was worse for us because our ' journey ' isn't going to end.
so don't be hard on yourself 🤗
I understand how you feel. It scares people when I tell them I have ET and it's a blood cancer. They either panic or feel sorry for me. I don't discuss this very often with other people. They don't know how tired I am or how down I am. I tell my doctor but sometimes I doesn't think he takes it serious. I am so glad there are people on this forum that understand exactly how I feel.
I find that my PV is the secret weakened block in the tower of worries. Life and its troubles go on, freaky cancer or not, and it is impossible to explain why I am quick to burst from endless problem-solving and caretaking in my little world. The fear that the troubles are going to play into my PV in a terrible way (stroke/clot) affects my behavior and tolerance. I guess it is that old saw that applies here: you never know the full extent of another's sorrows. In this case our friends must meet the challenge of comforting us when they can't really understand.
Thanks for that post. As you can see, many of us can identify with some of what you're going through. As someone posted earlier, "rant away." Best wishes
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