Not sure what to do

I saw an MPN consultant at Guy's on 15 March 2022, so five weeks ago today. She said I would have a further telephone consultation in 6-7 weeks, but I have heard nothing further; she also said that before my consultation I should go to Guy's cancer centre to have blood taken. Do you think I should telephone them to get a definite date for the consultation, and does anybody know whether I need a letter for the blood tests, or whether I can just swan in off the street?

[JediReject]

Hi mrsredboots, , your instructions regarding the blood test seem a bit woolly . Usually the Haematologist will leave instruction on the system as to precisely what tests are needed which informs the phlebotomist the number and type of colour coded phials to use. That's my broad understanding anyway.

Based on that I think you should try phoning to arrange a suitable time to pop by for your bloods because unless there is a main clinic for it the Haematology ones usually only operate during clinic times. You might not get much from your follow up telephone consultation without your blood results which I'm sure you appreciate.

That's my take on it but maybe someone who attends Guys will know how it operates.

I hope you get it sorted out and wish you the best of luck going forward.

Regards - Chris

[Hidden in reply to JediReject]

Well, I was told that the cancer unit runs a walk-in blood test service, so no need to make an appointment, but I'm not sure whether or not I need a letter, or whether they will be able to find me in their system.

[JediReject in reply to Hidden]

Well I'd guess you'll be in the system knowing the reputation Guys has so I would roll up as soon as if it isn't too far for you. Take care.

[LittleLuna]

I would suggest phoning Guys Haematology Secretary or department. Should have no problems with them if you explain situation.

[Hidden in reply to LittleLuna]

I'll probably do that; thanks.

[hunter5582]

As others already said - absolutely call - don't wait. Assertive patients receive higher quality care. Passive patients do not.

[dancingelephant in reply to hunter5582]

I always read your replies with interest - so can you help me here. I attended a clinic at Guys this week - a routine one and was told that the rux I am taking is no longer affective. My spleen has grown so large. They are recommending Fedratinib to begin as soon as possible.This will be given by my local hospital, and I am concerned about the change over of the drugs. Do you know anything about this, or any one who has experience of Inrebic?

[Hidden in reply to dancingelephant]

I'm afraid I don't! I haven't even started any treatment yet, assuming they decide I need it. Blood tests next week and phone appointment the week after.

[hunter5582 in reply to dancingelephant]

It is certainly known that some people do better on Fedratinib or Pacritinib than they do on Ruxolitinib. These medications are all similar in being JAK-inhibitors, but each has a slightly different effect and side effect profile. We are each different on how we respond to these meds. We are also different in how we respond to treatment over time. This is quite common with MPNs.

It is understandable to be concerned about the changes, but this is part of managing a MPN. It sounds like your care team at Guys is on top of things and looking to ensure that you receive optimal treatment. The switch to Fedratinib sounds like a good idea to try given what you have described. I would certainly try it were i in your situation.

There was some good information on the medication/treatment options reviewed at the MPN Conference on April 15. The presentation by Dr. Mesa may be a particular interest to you. healthunlocked.com/mpnvoice...

Wishing you success with your new treatment plan. Please do let us know how things go.

[dancingelephant in reply to hunter5582]

Thank you so much Hunter for your positive response to my query. I will keep in touch and let you know how the change is going.

[stevenjust]

Hi,Give the CNS nurse a call or email, they are really helpful and quick at responding. I’m happy to send the details privately as not sure I’m allowed to post on here.x

[Hidden in reply to stevenjust]

I've emailed them; hope to get a reply soon.

[Mumof5194]

You can just turn up for your blood tests. My daughter did a walk in for the first time about 3 weeks ago. I think they’re open from 830-5 Monday to Friday for blood tests.

You might want to chase up your appointment time though. Get the blood tests done a week or so prior to that.

[Mumof5194 in reply to Mumof5194]

To be clear, this was to the cancer unit. She just gave her details and she was on the system.

[Hidden in reply to Mumof5194]

Thanks; that's reassuring. I've emailed them to ask about my appointment.

[MaggieSylvie]

I book my blood tests to happen two or three days before my consultation. I am hoping this will allow any current changes to be seen. I have done blood tests on the same day as the appointment (when we were allowed in the hospitals) but you have to allow for delays that can sometimes happen.

[Hidden]

UPDATE, 21/04: I emailed the MPN department and have had a reply with the telephone consultation scheduled, and am told to go to either Tommy's or Guy's to get blood taken next week; I just need to give my date of birth and they will find me. All good stuff! Thanks for the support.