Hi all

Have not been on here for awhile, been very down and depressed. In December I went to an MPN expert at John Hopkins for a second opinion on my ET and HU and basically because every forum for ET says you should at least once a year see an expert and actually my GP agreed and referred me to him. I have been on HU since November with slow reduction of platelets started at 743, then 650, 617 and last count was 552. The expert wanted me off HU and that is what he wrote my GP, said it does not nothing for the stem cells and told since I had previously cancer three years ago I should not be taking this drug because it can cause other cancers. Then he tells me I really don't need to take anything right now because he states there is no research to show a correlation between high platelets and stroke risk that people with low platelets and normal platelets have strokes, that there is more of a risk of a bleed if it gets over a million. OK so this is going to be long sorry, then I go to my local Hem Dr and he disagrees wants to raise my dose because he says he does not want me to stroke out! Ask about other medicines due to all the side effects says no they have worse side effects. Hardly listens to me, rushes me out like this is no big deal I was there all of 15 minutes! In January got really sick, dizzy, throwing up all the water and a pain a real bad pain in my back near my kidneys, stop the medicine, pain immediately went away after two days, go to my GP some of blood work is off, low numbers for anemia, tells me don't worry about it, told him my legs hurt tells me to get up and move more, tell him my face feels like its on fire like a bad sunburn, says that has nothing to do with ET. Now the really best part is and he knows my local Hem Dr at the cancer center because its all the same hospital. Then he tells me everything is all in my head after him how worried I am of taking the medicine or not taking the medicine! He says its all in my head, now I have been going to him for years and years. I hate to complain, I rarely go to Doctors and then he told me stop looking up stuff about this disease, are you kidding me! seriously!

So now I'm really depressed, I go to bed at night thinking am I going to wake up. this is worse then when I had my original cancer which is the kind when you go into a cancer hospital and see people getting infusions, no hair, weak etc and wondering if they will be living in 6th months.

What is soooo confusing here in the US is that all these experts disagree, the local Hem Dr's think they know everything because they are blood Dr's but they don't about the MPN's. Some age does not matter, its your prior health issue's, some go strickly by the Mayo clinic and say over 60 Risk. This disease is rare some say take HU won't kill you very old drug but it is a chemo drug, it is old, never been reformulated (I'm quoting an expert from one of those conferences) and as far as medicine from the pharmaceutical company's cheap to dispense. Angrylide can be very hard on the heart and Pegasy well not too many Dr's know about it, the pharmaceutical are making less and less due to the new Hep C drug and most link it with the regular interferon.

So here is why I feel so depressed, I now do not like my local Hem Dr but not too many choices, if I go back to the expert which he feels I do not need to go back now, it is a teaching hospital, in the worse part of town and you literally wait for hours. Yes people come from all over the world to this hospital but he is one person that feels this way, one expert, eventhough he is considered an MPN expert, is a professor and director of the whole hematology dept and also an oncologist and a very nice man!

I heard Dr Messa at the Mayo clinic say they are doing trials with HU verses pegasy for ET and its very promising in the third phase. I found a trial not far me in Georgetown, however they tell me I am ineligible because I was on HU. But the Dr there Dr Kessler (also an MPN expert) say he would see me and maybe we could come up with an alternative because I told him everything. So do I go? do I just stick with my local Hem and keep my mouth shut and stay on the chemo pills which believe me I had tons of side effects. When my GP told me its all in my head and I truly believe my local Hemo Dr believes most of this is in our heads the side effects etc. He actually googled one of my side effects.

My life is I have a 93 year mother, an older son dealing with PTSD, a younger son dealing with lots of issues with his marriage and four kids, I work full time have to, to keep my insurance and a husband who does not deal well with sickness and keeps telling me there is nothing wrong with me!. I find my self coming home and going to sleep, not being able to do anything once I get home from work, simple tasks take me longer to do and just don't feel like doing anything! I'm forgetting things also. Stressed, depressed and everything else.

Sorry this is long, this is a great forum and I have not been on here for a while and just need a little input on what everything thinks. Thank you way in advance! Mickey

11 Replies

  • I feel your misery. My hematologist agrees with the expert. My platelets jump from 450 to 510 and back again. My hematologist says that Hu is not necessary until my count is 750 or above. So far my only symptoms are night sweats. The only medicine I take for ET is a daily aspirin.

    It would be great if they were all on the same page with the same thought process.

    I also live in the U.S. Texas.

    So far I trust my hematologist.

    Oh one more thing. He also believes that Hu can cause other cancers. He said I would most likely have a stroke before I got leukemia. Thanks for that one.

    Listen to and know your body.

    Good luck to you. Hang in there. Asking questions is a good thing.

  • Thanks Cannonfire, yeah that's kinda how my Hematologist is with the stroke thing he says it will be 20 years before I have to worry about leukemia and I said the same thing well thanks for that one. :)

  • Hi Mickey,

    I'm afraid I cannot advise you, the UK and the USA seem poles apart at times, but I wonder if you have tried this site. LISTSERV@LISTSERV.ACOR.ORG It's an American site, I registered and get e mail updates every day. I have never posted a question but there seems to be some very relevant information on there at times. You may already subscribe, so sorry if you do but I thought it may help you get more information specific to the states.

    I hope you feel better soon.

    Best regards

    Judy X

  • Hi Mickey, really feel for you. Sure all the stresses you have are not helping. Was on HU and had so many similar problems, came off it, did have two v minor strokes and still off all drugs, as they all seem to disagree with me (putting it mildly!)....find best thing is to de-stress by walking when possible. Eating v healthily. Lots and lots of water. Doc v keen am on aspirin (low dose). I have taken control of my life and decided against drugs. Last platelet count was nearly 600. Did have another cancer 4 years ago and wondered if chemo for that caused the ET....Want to encourage you, as you are so depressed and feel you could do with v kind, supportive doctor. Reckon a lot of medical people don't agree with each other over treatments and still a lot of unknown stuff about our condition. At the end of the day, though, has to be our own decision and I have opted to 'exercise' (swim and walk), take vitamins, eat healthily, drink lots of water, and trust will avoid further strokes! (Have nightly and sometimes very heavy sweats, but think...very good for my skin and a free Turkish Bath!!) Really, really wish you well and hope you get lots of support from this great forum. Tinkerbell13

  • Hi Tinkerbell so once you came off the HU you had two strokes, that scary. that is exactly what I am afraid of. I would like to decide against drugs but also don't want to have any strokes. May I ask how old you are and how long you have had ET? or your platelets were high. Yeah I cancer also three years ago and I am wondering if all the xrays caused ET, they did say something about radiation and believe me I had tons of Pet scans, ct scans and xrays.

  • Hi Mickey, the medics thought it was because my platelets went up to above 900 that was what caused the strokes, which, have to say were v v minor and no lasting effects. Problem with me is I have reacted badly to every single bug, which has rather put me off them. I am 75 this week. Very active! Had bladder cancer about 4 years ago and did wonder about the chemo was given after that, whether that had caused the ET, which seemed to appear months later. So must be about 3 1/2 years now have had ET. Mother (died some years ago) did have PV - was told no connection whatsoever, but actually think that is not really the case and there are family connections. Have found the medics are paranoid re strokes, but if one goes into the actual averages of people having them, seems there are an awful lot of unknowns out there and we don't all fit into any one pattern. I have decided that I would rather have quality of living and not be on drugs, but realise sensible to have aspirin. I gather we are all at risk of strokes, whatever we have, so am taking my chance. But again, reiterate that it is wise to eat and exercise sensibly and if at all possible, (not easy I know from experience), to avoid stress, or cannot do that, then to try to cope with it by 'walking'. Years ago heard a psychiatrist say that in all his 30+ years of treating people with stress related illness, the thing that worked best was walking! Really do wish you well and please keep in touch. Tinkerbell13

  • Thank you, I will love to keep in touch with you! I had cancer of the lung, caught early they removed my upper lobe, everything was fine until after and then had horrible horrible stress, work, kids, marriage and mom coming to live with me, but work was the killer. That's when I noticed my platelets rising, not that I had any symtoms per say just notice it on work blood work and brought it to the attention of my GP. We then watched it for 6 months went up went down but stayed at 700 the highest was 800. I have low BP, low cholesterol etc. I do believe it had something to do with my original cancer, too many xrays etc. My Dr sent me to a hematologist after I said what are we going to do? Now this guy he takes blood work, does a BMB and tells me I am Jak2+, I have too many platelets and I am over 60 so he hands me a paper from the Mayo Clinic! Now he seems to not want to bothered with anything just take your medicine, wants to increase it, keeps saying he does not want me to stroke out. I had lots of side effects from the HU but I kept taking it and it is a good thing to see an expert so I look at the list and picked Dr Spivak at John Hopkins, he agreed to see me and he has a whole different view and does not like HU. go back to my Dr he say you need to increase it, he does not agree with Dr Spivak, asked for an alternative, walks away says they are too harsh! My GP now says its all in my head and to stop doing research on this! Depressed is not the word! Now I have my three year coming up for my lung ca but funny thing is I'm not worried like I used to be be, think this ET thing takes presitance. LOL Thanks let me ask you this how did you know you were having these minor strokes, what happened??? are you on any other blood thinners other then aspirin?

  • Stroke was when couldn't move arm at all, no feeling, just hung loosely by my side. Then had brain scan. Showed something. Week later had another, this time for a few hours side numb, side of face numb, couldn't speak for a while. In stroke ward altogether 10 days. I was definitely least affected of everyone there. I don't know what the statistics are for causes of strokes amongst people with ET, but suspect it is no worse than with the ordinary populace! Wish could cut down on your stress, which is not self inflicted, but just landed on you. I think ET is slightly blown up to seem more important than it actually is, but always alarming for people when first diagnosed. You have had to cope with lung cancer which is a v tough one, and so hope your imminent check up has a good result and that you are making good progress. Very best regards, Tinkerbell13

  • Sounds very frustrating! I have not been diagnosed yet. My 1st hemotologist said it was an MPN, then said no its from smoking. If you don't mind me asking... what Dr did you see?? I'm seeing Dr. Brady Stein at Northwestern for a second opinion. I read from here that he is wonderful. I hope you feel better and start to get your strength back. I asked well can hardly do anything! I am 38 yrs old. Please consider some counseling maybe to help with the depression. Best of luck. Try to stay strong, I know it's tough

  • Dear Mickey, I'm sorry to hear you're having such an awful time. I have MF after starting with ET about six years ago. I'm currently 63 years old. Night sweats and severe fatigue have been my worst symptoms. I'm currently on 10 mg of Jakafi twice a day. I started at 20 twice a day and had to have a blood transfusion after my red cells dropped too low. I don't know how I would cope without the support of my husband and family! If I were you, I would definitely see the specialist at Georgetown! You need a doctor who understands that your symptoms are NOT in your head!! (Because they most definitely ARE NOT)!! I see a hemotologist at Vanderbilt University since I only live less than an hour from Nashville, TN. Believe me I know how hard it is to try & find a new doc, but you need one who believes what you are telling them, so please seek one out. You should not be alone in this, and even though you will find lots of support on this site, you must have medical professionals who believe and support you also. Try not to be hard on yourself, I can't imagine how you are doing as much as you are. Take care and let us know how you are getting along. Best of luck, Gail

  • Big hugs is all I can send. X

You may also like...