Concerned

I have been diagnosed with ET (approximately two and a half weeks ago) by Consultant haematologist. She put me on hydroxy 500mg daily and said I had to see her in three weeks. So....It is getting on for three weeks and no appointment through the post. Yesterday I phoned up the hospital and spoke to the specialist nurse (who is lovely by the way)...explained I work and need to know a date as it is getting close to three weeks. She said she would phone me back. Anyway, to cut a long story short my Consultant is off sick and will not be back until August. The day I phoned up the hospital a clinic had to be cancelled. Because of this situation they have made me an appointment to see the specialist nurse. So, my question is this; as a newly diagnosed patient who has been put on a chemotherapy drug is this acceptable? I am more than happy with the Consultant and feel strongly that I could have a good relationship with her long term. However, I am worried that there maybe a problem with staff shortages to my detriment. What do other people think?

23 Replies

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  • Sounds odd to me - if the original consultant is not available I suggest you ask to see another - I'm sure the specialist nurse will look after you well but in your place I'd be happier with input from a consultant too, to make sure your new treatment plan is working ok. Hope all works out well for you. Andy

  • Your consultant is your main port of call as doctors don't know enough about mpns.

    Ask if there's another consultant that you can see surely they must have cover as there will be a lot of patients who are under her care.

    Hope you get something sorted soon.

  • certainly not ideal and a bit surprising they don't have other clinical haematologists but many hospitals, esp smaller ones, do share haematology services so it's possible you'd have to travel to another hospital if your haem service is based elsewhere. You could get your bloods tested, check platelets, whites and reds in normal range, also that no abnormalities in liver and kidney function. The spec. nurse fine for this. She could probably also give you the lowdown on the service situation. Then decide whether to hang on for your original consultant?

  • I think it's fine. You probably need repeat bloods to see how you respond to hydrea? The specialist nurse is capable of consulting you on this. In my opinion.

  • I often see the specialist nurse but always saw the consultant when first diagnosed. I think you should ask if you can see whoever is covering. Although the nurse is better than no-one and I know mine is very knowledgable. X

  • This is shocking beyond belief. Demand to be referred to another consultant even just for the period that this consultant is ill. Nobody should be expected to wait to have their treatment monitored who has an MPN. Your hydroxy dose might not be correct and you need more. I certainly wouldn't wait. Put your foot down. Let us know how you get on and good luck.

  • The specialist nurse will need to take bloods, and review the results, and if there is a problem she will have to consult an appropriate level of doctor. That is all that needs doing really. You could ask for a copy of the results, start you own information folder. Have you enough tablets till you are seen next?

    Are there no Senior Registrars, etc. working with you Consultant whom you could see?

    August is not long, keep calm.

  • Thanks everyone for your input. I'll see what happens on Tuesday. X

  • Hi,

    I agree with borage, ask for a copy of the results, all anomalies will be highlighted on the form it will also show the range for each count so you will see for yourself how far out you are, you are manly interested in you platelets, I would trust the nurse and then ask to see a Dr if your questions or worries are not addressed,

    Have fun,

    Ourlife

  • I was also diagnosed with et 7 years ago and am still on hu to keep my platelet levels down no (side effects) as of yet, was told I will be on hu rest of my life. Find a good hemotoligist one that will use natural as well, hard to find! I am working with a naturlpath right now hope to get off wrfrin, and hu. best wishes and good luck

  • I also have ET, diagnosed 8 mos ago. It seems to me the first 4-6 weeks were pretty much filled with tests and waiting.

    You all sound like your Specialist's and Consultant's are so personable. Here in the US they are "specialists" the co-pay is double. My initial consultation was the longest appt I've had, maybe 15 -20 mins to manipulate my spleen and tell me pretty much what i had deduced from the internet. We have physician assistants here and usually they are a little better. Hopefully your specialist nurse can get anything of the other testing needed out of the way.

    How did you come to being diagnosed? What was your platelet count? Are you on hydroxyurea? I think the meds are more frightening than the ET. My haem said I'very probably had ET for as long as 3 yrs without knowing it and I was alright but now I'm on cancer drugs.

    My platelets responded immediately to the hydrea and my dosage was cut in half which has helped with the few side effects I was experiencing. I am now only having blood work every 3 mos and see the haem every 6 mos. From what I've read here ET is the better MPN to have and HU is the drug of choice.

    The whole thing is pretty over whelming at first and the lack of continuity must be adding to your stress. If your doing alright on the meds and having blood work done someone is out here reading the labs. I think initially the emotional support is more important and hope you have family and friends to support you.

  • Hi kerri2, I only found out my platelets were high (500) through a routine blood test. I was asked to go back in three months to see if it was still high and it was, still 500. I was then referred to haematologist for furthest testing and this revealed that I was jak2+. Because of this and my age (60) I was started on hydroxy (500) one a day and asked to return in three weeks. I will have to see what happens with the nurse on Tuesday. Glad to hear the treatment is working for you. I hate the idea of taking this drug and force myself to take it, as the alternative (strokes, heart attacks) in my opinion, is so much worse.

    Mary

  • Hope your appointment went well today. When will you know what your platelets are? My platelets were 1356 when diagnosed, 60+, jak2+, and previous TIA.

    Platelets brought down to normal range within 2-3 mos. My Dr reduced HU to 500 mg/day and so far they're holding steady. The HU is probably the scariest part but like you I'll take it over a stroke or heart attack any day. I had TIA in 2013, no permanent damage (that i know of). While it was happening I was totally oblivious. I drove myself to work and was an hour late - no recollection. I was having visual disturbances but just close one eye and carried on. Frightening that you wouldn't know something is terribly wrong and have the sense to pull over.

  • Hi Kerri2,

    Great news..my platelets have responded to the hydroxy, they have fallen from 500 to 436 in just three weeks. Long may this pattern continue on just one 500mg dose a day. I don't relish the thought of increasing the dose, although I realise I may have to one day. This news has given me a huge boost. Also, the red and white cells have not been adversely affected.

    My worries about seeing the specialist nurse over the haematologist were unfounded - partly I think because it was good news and she didn't have to make any major decision. My haematologist will be back at work at the end of August.

    That Tia you had sounds pretty disturbing - to think you can lose an hour from your memory whilst driving is really scary. We have to do all we can to prevent these events from happening in the first instance, and if that means taking the hydroxy so be it.

    Thanks for asking about me and hope you're keeping well too.

    Mary

  • Sometimes I like the nurse specialist better. Great news, they will watch carefully how often are they testing?

  • Six weeks is the next appointment

  • When I am given my prescription to take to the hospital pharmacy there is always a print out of my blood results on it, I take a picture of this on my phone and download it on to my computer so I have a record of the results for myself.

  • I have asked for print offs of all blood tests sine October 2015 for my own files. My main concern is, will a specialist nurse be "allowed" to reduce, or if necessary increase my hydroxy - or is it only a Consultant who can do tha?. This is the dilemma I face until August if it is the latter. I can totally understand being under the care of a specialist nurse - but surely that is once I am stabilised.

    Thanks to everyone who has responded. It is all very much useful information and so emotionally supportive to me.

  • The one good thing about my HMO is the on-line records mgmt. Once dr has reviewed available on line and you can graft them which I like.

  • I think our equivalent would be a nurse practitioner and the can write scripts. Haven't seen any in the heamatology/oncology depression so far. I am sure the y would be supervised by someone if there were any need.

  • Hey I'm only 18 and I have PV and ET, I know you're concerned, I was super scared when I first got diagnosed as well. But I can assure you that it seems like you're in very good hands and are on an acceptable treatment for your condition. I'm currently on 1300 mg of hydroxy and I know the numbers seem high and terrifying like they're a lot but it's really an accurate dosage since you've just been diagnosed. That's what I started out with too, they start at 500 just to see how your body reacts to it and once they test your blood again they'll see how sensitive you are to the medication and decide whether that's a good dose or if you need a bit more or less. If you have any other questions you can message me and I'll help you as best as I can. It's horrible to be going through this as young as we are but know that you're not alone and you can talk to me if you need to.

  • Thanks neek0ab,

    I am not too concerned about the diagnosis...just want to make sure that I receive the appropriate care as a newly diagnosed patient. May I say you sound so brave for your age, I feel truly humbled. I am surprised as a young mpn patient that you're on the hydroxy. I was under the impression that the young can generally manage just on aspirin? I am learning something new all the time. I am hoping that I will be able to stay just on one hydroxy a day😀

    Thanks so much for your reply and offer of answering any questions, I really do appreciate that.

    Mary x

  • Of course!! I know it can be concerning sometimes when dealing with something so serious so young, but it definitely sounds like your doctors have you on the right track :) typically you can be managed on aspirin if you're diagnosed early enough when your blood levels aren't too high but once they've reached a certain level they take the action of hydroxy because it works in a way to lower your levels instead of just preventing clots which improves your quality of life by bringing levels down to a more comfortable number. And no problem for offering help, I didn't have anybody to help me when I first started out and had all the same questions so I'm glad I could help and make you feel better about your situation :)

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