Down days

[ChillyAsh34]

I had my hydroxycarbamide upped from one a day to one for 5days 2for 2days platelets 480 since taking the extra hydroxycarbamide I am experiencing leg pain in one leg nausea, down days before the increase I felt great has this happened to anyone else

[hunter5582]

Unfortunately increased dose can result in increased adverse effects. I experienced toxicity at much lower doses than you are currently taking. Ultimately I could not tolerate HU.

Do bear in mind that there is no particular value to having your platelet number <450 per many MPN experts. Some now use 600K when a cytoreduction target is used. Some do not use a specific number at all, focusing instead on actual symptoms.

silvermpncenter.weill.corne...

legeforeningen.no/contentas...

Suggest you review your treatment goals and weight the benefit of trying to reach a specific target for platelet numbers vs focusing on actual symptoms. We always have to weigh the risk/benefit profile of each of our treatment options. This review is best done with a MPN Specialist. Many hematologists are not up-to-date on the current thinking regarding MPN treatment. Just in case you have not seen this, here is a list.

mpnforum.com/list-hem./

[ChillyAsh34 in reply to hunter5582]

How do you go about seeing an MPN specialist do you ring them

[hunter5582 in reply to ChillyAsh34]

Those who are in the NHS can advise you better, As I understand it there are two ways. You can have your GP or existing hematologist refer you. Some people have had trouble getting the referrals. The other approach is to select a MPN Specialist and contact them directly. Once they have agreed to see you, you take that back to the GP to get the referral. These two approaches seem to work internal to the NHS. Some of the MNP Specialists also have private practices. Some have reported they private-payed to get immediate access.

[ChillyAsh34 in reply to hunter5582]

Thank you

[lakeview65]

I currently have 2 Hematologists, one in each city that I live in and a MPN Specialist. They do not yet coordinate my care but I started off on 2 -500 MG a day and after 2 months my platelets are down to 236, from 697. WBC is down to 3 so I take 2 less pills a week, I am hoping that at my next appointment I can reduce the meds even further. I was surprised that i was kept on the higher dose since my platelets dropped 50 to 75 every 2 weeks. I have no symptoms yet other than a slow digestive system.

Sorry to hear that you are experiencing symptoms, I hope it works itself out or give your DR. a call. Happy Holidays.

[ChillyAsh34 in reply to lakeview65]

Thank you

[hunter5582 in reply to lakeview65]

I have the same arrangement. I see a MPN Specialist periodically who is about 2 hours away. I also have a wonder local hematologist who handles my ongoing care. The MPN Specialist consults and advises both of us. I handle all of the case coordination, serving as my own care manager/advocate. I ensure that all of the labs, reports and recommendations are clearly communicated between my two hematologists and the other specialists I see. At times I have doctors consult with each other directly when it is needed.

Recall that you do not need your doctor's permission to reduce your dose of HU, but you absolutely want to consult with the doctor about it. The discussion is about what your therapeutic target is. There is no particular value to having your platelet levels in the normal range. Risk of thrombosis does not correlate with platelets<450. Thrombosis risk is about how your blood cells behave, not how many platelets there are. When a numeric is used for cytoreduction, some MPN Specialists now use 600 as the target.

silvermpncenter.weill.corne...

Suggest that your next conversation include a discussion of what your treatment goals should be. Controlling symptoms is not the same thing as keeping platelet levels "normal." You have to weigh the intrinsic risks of HU toxicity (or any other med) with the benefits you actually experience. This decision needs to be based on your treatment goals, risk tolerance and preferences. Your doctors' job is to help you achieve your treatment goals and to respect your right to be the one who makes the decisions.

All the best to you.

[lakeview65 in reply to hunter5582]

Thank you for your response. I am struggling trying to coordinate DR's. I will get better at it as time goes on, I will have too. It doesn't help that my first Hematologist left his practice and I need to find another in one city. I did so much initial research yet I failed to ask what my target platelet count would be. The first time my platelets dropped into the 200's I talked to my Florida Hematologist and he stay no reduction in meds, I then called Moffit and my Specialist there said the same thing. I was surprised. At my next appointment I hope they will drop meds again. It has only been six months since I was diagnosed and I will work on figuring out how to coordinate Dr.s. Certainly I would like Moffit to make the ultimate decisions .

You are a wealth of information, Thank you again.

[shiftzz]

My MON consultants are in the same clinic, a lot depends which one you get on the day. One is happy to simply change the hydroxy dosage and strict hct target , any result over the target was a venesection, my target was 0.450, if my resukts was 0.451, he would insist on a venesection, it was a conveyor belt approach, other consultants would look further, one decided to change my care by adding interferon and doing more tests, spleen check, jak2 tests etc.

Some consultants are quite lazy others are better informed, some denied the pega cough.

[hunter5582 in reply to shiftzz]

Pool doctors are not acceptable. This precludes a healthy caring doctor-patient relationship. It is the patient's right to choose the provider whose approach is what they desire. It is also the patient's right to determine their own course of treatment in consultation with the provider of their choice. You are the one and only decision maker as it regards your care. Physicians consult and advise. Patients decide. Lazy providers should be fired from your case. Uninformed providers should be fired from your case. Inadequate care can only continue when it is tolerated.

Patients are human beings not cogs on an assembly line. We each have a right to individualized care based on the unique presentation of our MPN, our goals, risk tolerance, and preferences. All the best to you in making this so.

[Solyesh]

I experienced something similar on Hydroxy - I was fine at 500mg/day (1 tablet) and even managed quite well at up to 1,000mg/day (2 tablets) but when we got to 1,500mg (3 tablets) the side effects were just too much for me to take (and we were not getting the results we wanted either) so my MPN specialist agreed to switch me to Peg.

[EPguy]

My Dr put me on 1000/day at first. It worked too well and I was miserable a few months later. Leg cramps, nausea, malaise. I asked to reduce to 500, and a bit too little. I can tell when I need an extra pill by tingling/numbness in the fingers/toes. So now I take an extra when I feel that sensation.

As Hunter said, PLT may not be critical at modestly elevated levels. You do want to be sure about HCT however, was that ok before the increase? If so it, or other blood numbers, could go too low as mine did. You should ask your Dr more details about the reason for the increase.

[katiewalsh]

Hi, ask your doctor if you can separate the days with two pills. I take the same regimen you’re on except I take 1,000 mg on Saturday & Tuesday so it’s spread out. It may not help you but it might. Good luck.

[lakeview65]

Thank you for all responses. I soon go back to see the specialists and I am going to push for less than the 12 Hydroxy I take now a week. Answer to above- My HCT was 43 now 39.

I feel great on the 12 pills a week, walking 5 miles many days a week. I pray it stays that way for awhile at least.

Best to all of you.

[Oscarsboy]

I am on the same dosage as you and platelets around the same value and also get leg pain in one leg. I do not get the nausea but have started some slight headaches again also. I have bloods and a phone appointment in January so am going to mention it then. I did mention the leg pain when I had an appointment with Guy's a month or so back but no real comment was made.