Do I need 2nd opinion ?

[Mardihel]

Hi all, I am just wondering what to do at my next appt at the hospital in April. I do not now see the consultant haemotologist, I see a nurse? All she seems to want to do is bring my platelets down to 450 and keeps upping my dose of hydroxy. I see that some of you are my age 63 I ET jak2 positive and take only aspirin. I had no symptoms, just found from a routine blood test last year platelets count was 900. Now hovers around 630 to 703 at the last visit. Any suggestions, do I request to see someone else, or just not take the hydroxy, just continue on one a day.

[Scottishterrier]

I have seen an MPN Clinical Nurse Specialist at my haematology clinic and she was a god send and as knowledgeable than a consultant and also you should take her at her word she was great and a sad loss to the our department

best wishes scottish terrier

[fee13]

How long have you been on the hydroxy and what dose do you take/how often? Your platelets are quite high so some form of cytoreductive therapy is a good idea especially if you are tolerating hydroxy. Usually if platelets reach over 1000 the blood changes and can activate the von willebrand factor which makes blood thin and prone to haemorrhages rather than clots.

Does your nurse seem knowledgeable and does she listen and offer advice?

[Mardihel in reply to fee13]

No this one doesn't, I asked her about a redness on my face which wont go away, and she just said go see your gp. I might suggest, if I see her next time that I'm going to request a second opinion. Thank you for your reply

[WileyFrench]

Hi there - I’m 63, have ET triple negative, and was on just aspirin until I had a TIA and then went on hydroxyurea to lower platelets plus clopidogrel to make platelets less “sticky”. The haemo, like the nurse you have, wanted to get the platelets down and had wanted me to start HU before I wanted to. Would that have prevented the TIA? I don’t know, but the advice you’re getting from the nurse seems to be the same direction I got from my haemo. When you did see the consulting haemo, what was his/her direction?

[Mardihel in reply to WileyFrench]

I saw the consultant when she gave me the new I had ET and Jak 2 positive. Not seen her since last Sept.

[Ebot]

Hi. You seem to be following a standard course of action. The triggers for treatment are usually reaching 60 or platelets topping 1500. Unless you have other compromising health factors / symptoms in which case earlier intervention may be desirable.

It’s entirely possible that some patients / haems will resist commencing drug intervention despite reaching these milestones. The important thing is to discuss your options with your nurse and your haematologist. No one can force you to take meds, they can only set out the potential scenarios, pros and cons. It’s up to you to make your mind up as to an acceptable course of action.

What I definitely wouldn’t do is stop taking the Hydroxy or change the dose without first having that discussion. All the best.

[Chaz1]

It won't hurt to discuss this with the nurse. My hubby is 48 & has similar levels, no thrombotic event but very symptomatic but no additional meds from the aspirin until he turns 60 unless things change (ie health changes, platelets go up to 1500). This is the general course of action & I believe this is due to research results. What are you blood pressure, cholesterol etc... If these are raised then it will lead to additional treatment due to the risk factors whatever your age. I'd discuss the options with your nurse, she is following the standard course of action for your age but there maybe other factors not just age for the decision.

[Boriqua]

It depends on your situation if they are giving you meds and feeling better your good, if not and its at no cost why not. I am in the same situation 63 Myelofibrosis diagnosed in 2015 a war veteran went to the Veterans hospital where most people are incompetent lack of knowledge, Then I went to a Cancer centre now I am much better, taking Jakafi, something the Veterans hospital should have done that almost caused me my life.

[Bigmann1 in reply to Boriqua]

Hi boriqua

I’m in the same situation. I was wondering how well your doing on jackafi.? Did you consider bmt? Do you feel jackafi is slowing progression down? I seem to get mixed thoughts on this.

Thanks

[JediReject in reply to Bigmann1]

Hi Bigmann , , just thought I'd butt in as a prior Jakafi user and say that as far as I know Jakafi is not proven to slow the progression of MF itself but in many cases it manages the symptoms of it like itching, fatigue , night sweats, and in some cases spleen size reduction very well. It certainly helped my feel good factor both before and after my Stem Cell Transplant Though when first on it I'm sorry to say it didn't have any impact on my spleen size.

Cheers - Chris

[Bigmann1 in reply to JediReject]

Hi Chris

Thank you for your reply. I am 65 years old nearly diagnosed with mf. My previous hemo didn’t mention if I would be a candidate hence the reason I’m going for a second opionion. I really don’t know much about having sct. I want to find out about all my options.

I wish you well in your post op.

[Boriqua in reply to Bigmann1]

Bmt, is not for me, but Jakafi gives you back your quality of life, it's like a bandage but disease progression continues, there is no cure as far as medicines go. I am taking part in the clinical trial of Navitoclax together with jakafi, could stop disease progression and there are many other good drugs coming being studied with promising results. Good luck, BMT could be for you is the only cure for now.

[Aime]

Hi, my advice would be to discuss your concerns with the nurse first, being honest about how you are feeling. If you are still worried after that, ask for a second opinion as it will put your mind at rest and you will have taken another step so you feel in control and most importantly, you have a say in your treatment.

I have learned to more assertive on my journey and you can do that and still remain polite. Hope you get your answers soon, kindest regards Aime xx😺😺

[Mardihel in reply to Aime]

Thank you Aime, I think you are correct, I will do that on the 2nd April (my next visit) I have also had bad neck from tennis and was taking ibuprofen, apparently inflammation can also cause your platelets to rise, found that info from the internet, not the nurse, she just upped my hydroxy. X

[Loubprv Volunteer]

Hi,

I have PV not ET, but I buddy and have buddied around 33 my patients, some with both PV and ET.

I always, always say if you’re not happy, are not certain with regard to your treatment, then PLEASE please seek a second opinion. Preferably from someone who specialises in Mpn’s.

There are around 36 blood cancers I believe and the haemos ( or nurses) can’t know everything.

Don’t hesitate, you can go to any hospital you wish with a referral from your gp.

I decamped from my local hospital in Cumbria almost 6 years ago, to a specialist at the Christie in Manchester.

It takes almost an hour and a half to get there but it’s worth every mile.

You can at least get a second opinion.

None of us are doctors on this site, and it’s your life and your health and you really sometimes have to take both in your own hands.

Love

Louise

[Mardihel in reply to Loubprv]

Thank you Louise, I will stand tall and do that x

[charl17]

The dose of HU has to be calibrated. So they would normally increase the dose gradually, do blood tests and check for adverse reactions to the drug. It doesn't surprise me that a nurse would manage this process. To me the issue is HU vs. interferon and it seems that the physician has chosen HU as the first line treatment.

[Anag]

It’s different for everyone. I have had a total of 7 TIAs (including this morning, unfortunately, in the last 3 years at 550 to 873. Others have never had strokes or thrombosis at 1200 and take only aspirin. It all depends on how each body reacts to the illness. I guess it’s a risk. I don’t understand why a nurse could be used as your caretaker. In Austria, Germany and Switzerland, it’s always a hematologist or whichever doctor is needed. A nurse can’t prescribe anything, not even for a simple cold. I regarding 2nd opinion, I believe one should always have a second or even a third opinion. You should feel really comfortable with your doctor. That plays a big role in healing! Good luck!

[Hidden]

What exactly is worrying you about the treatment you are receiving? Do you not want to take the medication?

[Mardihel in reply to Hidden]

Hi, to be honest no I don't like taking hydroxy, it makes me so tired. I do take after dinner in the evening, and I am literally flat out by 10pm and sleep solid until 7.30 ish next day, feel ok then for tennis or whatever I'm doing. I just feel they are in a rush to get my platelet count to 450.

[Hidden]

There are other options for medication other than hydroxy. You might want to discuss them with your haemo. Getting your platelets down to normal levels is for your good to lessen the risk of blood related problems such as a TIA or stroke. Age can increase the risk as can issues with blood pressure, cholesterol or previous TIA etc.

[Cja1956]

I definitely would not stop taking the hydroxy. When I first got diagnosed with Jak2 positive ET in 2008, I was at 600000. After a few months on the meds, the number dropped to the 300’s. I stopped the meds on my own and ended up in the hospital for 3 days with a blood clot in my spleen and my numbers were at 800000. I think getting a second opinion is a good idea before doing anything on your own.