Hello @Erica I just wanted to say I am thinking of you with the anniversary of your diagnosis. It must have been doubly hard all those years ago so close to Christmas. I had my diagnosis anniversary in November - 33 years, so I have lived almost half my life with blood cancer now. Of course I am grateful to still be alive but I do find it a difficult time, especially now that my twin sister has also recently had the same diagnosis. Every time she had a blood test I would hold my breath waiting to see if all was ok because, being identical twins, it seemed inevitable that one day she would get the same diagnosis. In the end she was diagnosed thirty years after me and at more or less exactly the same time of year - very surreal! Sorry Erica this post wasnāt meant to be all about me. I am thinking of you very much and thank you for all the support you continue to give on this forum. Wishing you and your loved ones a peaceful Christmas. Warm wishes Willow x
Hi @Willow oh, so your twin sister has had the same diagnosis, I just donāt believe you family history.
Yes, my cancerversary was very weird and reflective, mourning, plus survivors guilt. It was for my younger sisterās shock diagnosis of a different type of blood cancer to mine and her dying within 3 mths. A very special friend of mine who died recently of another cancer and whose birthday was on my cancerversary and another friend who died this year of another cancer whose birthday was this week.
I have just done the same and made this about me !! Anyway it must have been so scary awaiting your sisters blood test results as well as your own. Gosh 30 yrs later and at the same time of the year.
A peaceful Christmas seems really good to me and I look forward to hearing more about you in 2026. Very warm wishes to you and yours too.x
Oh @Erica! Thank you for your understanding and for sharing. I am so sorry to hear about how cancer has affected your friends plus your sister with a different blood cancer and losing her so soon. It is doubly hard, I think when these significant dates coincide if you know what I mean - like your friendās birthday falling on the date of your diagnosis for example and now losing her. Yes, it has been extra stressful over the years waiting for my sisterās routine blood test results in case abnormalities were reported. She hasnāt really thought about it over the years. She told me that recently but it has always been a concern of mine.
As a separate issue she has a non healing ulcer on her toe which is very painful and despite excellent medical attention is showing no signs of resolving. She is waiting for an appointment with a tissue viability nurse. There is a possibility that the ulcer might be connected to the Hydroxycarbamide she was given at diagnosis for her high platelet count so she is now on Ruxolitinib instead. I still canāt get my head around her having to take the same medication that I have been given in the past. It feels unreal. All my blood counts are on the low side now as my disease has changed so my sister and I are at different stages but it is hard reliving a lot of my experiences through her! Thinking of you Erica and thanks for responding. Willow xx
Hi Eli
I have just seen your post. Perhaps my journey may help you . January this year I was diagnosed with polycythemia, Essential thrombocythemia (ET), JAK2 mutation. After being assured it was treatable I started with venesection then hydroxycarbamide. I am now 72 years old and surprisingly excepted easily, but did find it changed my outlook and temperament due to frustration at times.
For me it was a balancing act to get the drugs and treatment levels right . Some of the side affects were not nice but now I am back to 90 to 95% of my normal self.
Donāt expect any immediate could you changes from treatment the improvements are small and can take weeks, but all of a sudden you will realise things are better. As many have said with our conditions we will get back to a very long normal life.
To start with there maybe dark times but long term you will be OK. Never give up as their are lots of people on this site that can give you support .
Merry Christmas and a Happy New Year.
I did something I now half regret. I went to see a different hematologist as the one I had seen previously I felt was a bit āquickā with me and didnāt give me the opening to ask questions. However, the one I saw on Wednesday was the complete opposite. It seems she has given me every single test under the sun - a myriad of blood tests seemingly checking for auto immune conditions, spleen ultrasound and even a test for obstructive sleep apnea. She wants to build a complete risk profile, seeminglyfor CVD. She did say that she suspects CHIP as opposed to full on Polycythaemia vera, though I think I am a bit young. The first hematologist I went to suggested none of the above and just asked me to take aspirin and do repeat blood test in 3 months. It sounds crazy but out of the approaches(you could say extremes) I actually prefer the fist approach. Am I mad? I am completely burnt out from testing and obsessing over specific numbers. I donāt want to know the statistical likelihood of me dying from heart disease, its too much for me, just too much. If the end result of all of the additional testing is anyway just aspirin and perhaps phlebotomy at this stage(even the second hematologist admitted that if I have Polycythaemia vera and not CHIP its very early stage) then what use is it to increase my anxiety even further just for the sake of āmore knowledgeā? Is it legitimate for me to go with the first hematologist who seemed to take a more minimalist approach of āif the way I currently treat it isnāt going to change by knowing more then I wonāt put him through moreā. I just canāt take going for more tests right now. And its a rabbit hole of the more tests you do the more you will have to do, as they always find somethingā¦. Just need a leg up and some support from someone who may have experienced similar feelings in the past. Genuinely appreciate the people on this forum so much, I cannot imagine going through this without them. Apologies for this long sulk.
Hello there @Eli, happy new year to you. Sounds like youāre being well tended to by that new haematologist with all the testing!
Speaking from experience of having a very hands-off first haematologist who even forgot heād already prescribed me hydroxyurea (chemotherapy!), Iād rather have your second doctor who is checking thoroughly.
I was also checked for spleen size, sleep apnoea, and had a bone marrow biopsy (BMB) and aspiration. Myeloproliferative neoplasms (MPN) can sometimes make our spleens start producing blood cells which enlarges them and can feel uncomfortable, so thatās good to check.
My second haematologist tested me for sleep apnoea as it can affect how much oxygen our blood carries and Myeloproliferative neoplasms (MPN) affect how thick our blood is, so decreasing apnoea can improve our blood flow and thus symptoms of Myeloproliferative neoplasms (MPN).
Iād say, as youāve already started the ball rolling with the new specialist, why not finish that testing? From what my specialists say, I likely wonāt need another BMB, spleen ultrasound, or apnoea testing again, unless thereās major changes to how my Polycythaemia vera (PV) presents.
As someone living with PTSD, anxiety is a major part of life and going through testing for Polycythaemia vera (PV) really activated so many fears and unknowns for me. What Iāve found is having clinical answers that I can reflect on, go back to, and discuss with specialists who can explain them in terms that my non-medical brain can understand is so helpful. My anxiety has never been so low, I reckon due to knowing more about what Iām living with.
If anxiety is affecting your day-to-day life and mindful activities to help calm those racing thoughts donāt seem to help, then do consider seeking some therapy. Perhaps where you live you have access to great counsellors, is there a (blood) cancer organisation who might offer the support of specialist therapists? I know Blood Cancer United in the US can direct us to counselling.
Iāve been lucky to find an incredible trauma-informed therapist where I am who helps me tolerate the chronic illness part of surviving these sorts of blood disorders. I canāt sing the praises of therapy enough but Iāll end there as I donāt want to go on!
How would it feel to have all that testing done when youāre ready, to receive more information about what youāre living with, and then start treatment soon? Sometimes our gut reactions to these sorts of questions suggest the direction to take.
Let us know what you decide @Eli, Iām sure youāll know what to do.
I really appreciate your reply @Duncan and wish you a happy new year! Iām as yet undecided exactly how Iāll go about it. Iām leaning towards a more hands off approach for now. Iāll go back for repeat blood tests anyway in March. Letās see what they bring. If my hematocrit remains at the level it has been and the results look stable then Iāll likely continue the āmonitor for nowā approach of the first hematologist. If there are noticeable changes then even my first hematologist may suggest a more hands on approach.