Hi after eight months with my heamotologist and only having the jak2 and JAK exon 12 mutation tests and not really progressing any further with a diagnosis of either a primary course or a secondary reason for my polycythemia, I've now set up a new heamotologist appointment on the 18th of April, hopefully I get some answers now. Xx
Hi Julia that's a very wise move. I was in the same situation as you and changed to an MPN specialist. I now have answers. First off, you need a bmb. That really is the definitive test to show where you're at as far as Pv, et etc. I didn't want one, who does, but I'm glad I got it. Hope you'll finally get your answers. Zap
Thank you, yes I think it will be a good idea o have one too even though like you say it's scary but it's the only way for sure. X
Hi Julia having the bone marrow aspiration and a complete blood test is needed in order to rule out or confirm Polycythemia. I had a year of testing before a final diagnoses. You name it, I had it. Two Doctors said "this is a mystery. Finally my very last test was a lung function test including a spirometry test. My red blood cells were high. I was finally diagnosed with secondary Polycythemia being COPD. Now I know what I am dealing with. Been referred to a Respirologist specialist. Finally a treatment for me,
Hang in there soon you will know.
Ellen
Hi Julia.
Yes, you are certainly doing the right thing in returning to your haematologist for answers. I would suggest you make a few notes relating to the problems you are encountering to ensure you remember everything you need to put to the specialist. As far as the BMB is concerned it really should not be a worry for you. When you go along for the procedure tell the doctor performing the task of any fears you may have and these should be resolved. Normally one receives a painkilling injection beforehand and then what follows should be painless for you. It doesn't take any more than a few minutes and is an important test the medics need to supply the best treatment for you. Good luck. Peter.
Hi Julia just read Peter and Ellen's responses. Seems to be unanimous that you need a bmb. Peter was very informative to me when I was getting one. I opted for anesthesia and was shocked. No pain at all. Not during or after. I wouldnot hesitate to get another one if ever needed. It's really fear of the unknown. You'll be glad you did it once it's over. Zap
Hi Linda.
Seems like you are in good spirits. Just to advise you that the haematologist continued with the lower dosage of Ruxolitinib and will reassess in 4 weeks. The results were virtually the same as the previous appointment. So - status quo for me. All this despite a very unwelcome cold I collected somewhere down the line. Doctor said to beware of children and animals as both can have an effect on you. The cold was not helpful but is vastly improved now. My formost consideration at the moment is the neuropathy symptoms in my feet etc. Fortunately it seems controllable and does not interfere with my sleeping pattern. The vascular appointment has been delayed a few weeks so I have no further information on this until later. Hope you stay well over the holiday. Peter.
Hi Peter my spirit seems to have improved when the sun started to shine. I difinitely suffer from winter depression. I also went to the Drs Thurs. My platelets dropped 33 pts. So pretty much status quo for me to. (For now)! I don't go near kids or pets so no problem there. Hope you get an answer about your neuropathy. I wish these Drs would stop changing and delaying appts. It's so stressful. Hope you have a good holiday. Please let me know when you know what the dr says. Stay well. Linda
Thank you everyone, hopefully in no time at all I'll receive answers now and if he recommends the BMB I'll feel happy to have one. I'll let you know how things go next week xx
Hi Julia, wishing you good luck next week. I am certain you will do just fine. Keep in touch and we will be thinking of you, Keep us posted.
Ellen
How do you feel? Do you still have the bone pain and feeling unwell? Still trying to get a diagnosis myself, my numbers are somewhat like yours and being feeling fatigued and bone pains plus a nasty red rash all over my body.
glad you get to see the hematologist soon!
Hi yes I get alsorts of horrible symptoms, the fatique and dizziness can be the worsed, but I'm also going through the menopause too, but my GP won't treat me for that because of my red blood cell count, he's scared because of the higher risk of blood clots with HRT and Ive already got thick blood to start with, so I'm not sure what's giving me my symptoms, the menopause or polycythemia, or both it's frustrating, so I'm hoping a new fresh start will be a good decision. I'm sorry your no closer too, are u in the U.K.?
USA , I was having bad pelvic pain too so my ob put me on lupron too so for 3 months I was put on a "chemical menopause ", I finally got my period back, lupron is horrible!! Any way my doctor said it's probably muscle pains I am feeling as bone doesn't have any "nerve endings ", but I AM sure I have bone pains and not muscles! I had to point out that my hemocrit RBC are elevated and have been slightly going up every time, hematology are not gonna see me unless he puts a preliminary diagnosis, I do have enlarged neck lymph modes too but ultrasound showed enlarged but benign looking. So tomorrow back I go to my gp demanding he puts me down as polychythemia or I won't be able to see the hematologist! Meanwhile I have ton of symptoms and feel like on the verge of dying every day!! Sorry for the rant!😔
I'm sorry you sound like your frustrated too, I think for a lot of us finding the answers are difficult, but you also feel vulnerable because every ache, dizziness tiredness etc.....you think hey up, is my blood high again or getting higher,and you can't see how high it is and that's brings on anxiety. I do hope you get sorted, how high is you blood at the moment?
The hemocrit is around 47
Hi Peter hope you're feeling well. I don't think you saw the dr yet. It was 80 degrees today. Don't know Celsius. It was hot and I layed out in the sun for about 45 min. Got a little color and feel pretty good. This is my first summer on Jakafi and I didn't have any reaction to the sun. It definitely helps my mood. I've changed Drs also. Will be seeing him May. Not happy with the current one. If I don't like the new one, I'm going to New York. I'm only 12 miles away. Be well. Linda
Hello Linda.
Yes, am keeping on top of things generally here. I think the sunshine does give one a lift but must not overdo it. With all this climate speculation it seems the sun is much stronger than we have all been used to and can have some very undesirable effects. Pity it doesn't effect a cure for PV etc. My next haematology appt. will reassess the Ruxolitinib usage for me. I will be quite content to remain on the lower dosage providing the blood tests remain much the same. That will not be for a few weeks now but also have a further appt with vascular surgeon who will check the bone/nerve pain situation affecting my feet etc. He has been very interested in the PV (MPN) connection and his views will be interesting I am sure. What made you change to a new doctor again Linda or is this the change you anticipated earlier? Hope you find this more suitable for your requirements. As a matter of interest to you I have a good friend living in Baltimore (recently moved from Annapolis). We have been asked to visit several times but with the way my PV has moved have been a little reticent to undertake such a journey by air. If things settle more maybe we can make a visit. Time will tell. I take note that NY probably has some worthwhile medics Linda. Enjoy your holiday and the sunshine. I don't think you will have any difficulties with the Jakavi and the sun as you seem to be unaffected so far. Not too much chocolate though, you might need to diet afterwards!! Keep fit and happy.
Peter.
Hi Peter yea I know I have to be careful with the sun. Glad you're gonna see the vascular dr. He sounds like he's up on the Pv as well. I'd be interested in his findings. Please let me know if you'll be continuing on the Jakafi dosage. Im changing Drs cause where I go there's 4 I the group. 1 left, 1 is pregnant and I feel nobody's minding the store. I want to see 1 dr only who knows me, not different ones. I'm afraid to fly cause of the blood clot factor. My son lives in Florida and I won't go there. Maybe you could go Baltimore, it's very nice. See how you feel. Enjoy the holiday also. I'm not crazy about chocolate so I'll be ok. Take care. Linda
Hi Linda. I think you are absolutely right when it comes to the question of continuity in visiting the same doctor, particularly where a serious disorder such as PV-MF is concerned. With rare diseases it is much preferable to speak to the same medic each time as they will be au fait with your circumstances and also the disorder and the treatments available. It saves repeating oneself each time you attend. I will let you know of anything interesting that arises from my next appointments with the hospital specialists. I will remain on the low dosage until then. I understand that air travel can be undertaken providing you take the necessary advice and care for such a journey. As for Easter, well how that has changed over the years. All bunny rabbits and chocolate eggs now - don't know how that fits in. Have a good day. Peter.
Hi Linda.
You wished to know if I would be continuing with the lower dose of Ruxolitinib and the answer is "Yes". It seems my blood has remained much the same as previously and there is absolutely no need (unless things change) for me to revert to the higher dosage. The Haematologist is extremely pleased with the results and expects things to at least stay the same, or maybe improve a little. I acknowledged that it is still early days as far as this treatment is concerned and we all look forward to pleasing results in the future. For sure.the blood results are passed to the research team for their analysis of the drug and its overall capacity to successfully treat MF to and other MPN disorders. A satisfying conclusion I feel.
Further, I can say I now have another appointment re the vascular specialist but this will not happen until 3 weeks time. A date is fixed. Feeling pretty fine with no obvious effects from the treatment. Hope you can take comfort
from this too.
Peter.