Hey @Tony1867 that’s great news.
Take care of yourself
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Hey there @Tony1867, very glad to hear you’re still going strong—that gives me hope and brings a smile to my face! I wonder if you have any tips you’d like to share from your experiences?
So far, and I’m aware of how easy I have it relative to others with Polycythaemia vera (PV), the fatigue is doing me in. I truly hate not being able to think stuff through as easily as before, let alone getting wiped out physically by short walks or standing up to do domestic tasks. But I"m also really glad it’s only fatigue affecting me during this chemotherapy!
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Hi Duncan
I suffer from fatigue as well but the best tip I can give you is talk to ur doctors about blood thinners as I had blood clots in both of my lungs which nearly killed me then they put me on blood thinners could have been too late so have a chat with them and good luck for the future
Tony
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Oh goodness, sorry to hear about those blood clots, @Tony1867! Very glad you came through all that. I had a heart attack a decade ago and have taken daily aspirin since to thin my blood, and I’m having phlebotomy now too, so I’m hoping that’s enough to stop potential clotting…
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Sorry to hear about the heart attack but keep positive
Today I’ve been to Scarborough with my wife daughter and granddaughter (aged 10 ) I hope we have many more days together so be positive 
Tony
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Had a great week health-wise and thought this would be the place to share it. Had my complete blood count checked prior to my second phlebotomy this week and my haematocrit level has come down by a lot already! I was really surprised as I imagined it would be a slow process of gradual decreases over months, but nope dropped to 48.4 % within a fortnight.
This has really buoyed my mood and given me confidence that the bloodletting, daily aspirin, and chemotherapy is working as planned. Bet my highfalutin haematologist might respond drily, “well of course it’s working”. We mere mortals, however, have to trust that our bodies will respond well to treatment and follow the research, and it’s gratifying that it’s worked so well, so far.
The nurse for my second phlebotomy reminded me that removing blood is likely to improve my energy levels as having less blood after bloodletting means my heart doesn’t need to work so hard, hence less fatigue. We compared hiking trainers as he was wearing a pair I’ve considered getting and he said they’re comfy enough for standing around on his feet for hours, so that’s good enough for me!
Speaking of hiking, I’m taking daily walks (usually to the café) to make up for being too fatigued to go on my usual big hikes, and have taken up yoga again and daily bright light therapy. All this seems to be making a difference to my energy, seemingly giving me a boost through the afternoons when my fatigue seems worst, so I’m going to keep up with all that. Besides, they’re pleasant enough ‘treatments’ to not feel like hassle. In fact I’m really loving getting back into yoga. My poor back is not as flexible as it once was though… yet!
Managed my energy well enough this week and yesterday in particular to get out to a great gig last night and even had a little dance! So chuffed to be figuring out what my knackered body can still do!!!
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Hi @Duncan thanks you so much I am honoured that you shared your great week with us.
The nurse you saw seemed really approachable and practical in the way he explained things and of course very knowledgeable about hiking trainers.
Your daily walks and fresh air seem to be going well too.
My poor back definitely is not as flexible either !!
But as I think I have said before I am a Pilates girl.
The gig and a boogie sounds good to me, who were performing?
Keep boogieing and posting I say
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Aww thanks @Erica! Share and share alike, as they say, and I hope my moments of optimism might not be too grating for others going through all this, possibly even motivating people to keep on keeping on…
Perhaps your back has more flexibility than you give it credit for, especially doing Pilates—you must be a very balanced person, dear Erica! Bet you’d get a lot out of the postures practiced in yoga too. I’m hoping it’ll loosen up my tight lower back and strengthen my shoulders, which have had to carry a lot recently.
Last night’s gig was an amazing retro-soul singer, Lady Wray, and her band performing. Her voice was going but she kept being given medicinal shots of whiskey by audience members to help! Had so much fun with my husband singing along and a beautiful diverse audience 
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Thanks @Duncan apparently our balance gets worse as we get older and my Pilates has really helped my back and it’s flexibility.
I have done Yoga, but just prefer Pilates.
Lady Wray sounds great fun probably even more so after taking her medication!!
I think singing, dancing, enjoyment and laughter are the best medicine.
I (although I am not a medical person) prescribe it, look after yourself
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Isn’t it great how these simple (free!) pleasures can be so therapeutic? Thank goodness the pandemic didn’t entirely kill off the arts and those who create them, I say.
Speaking of, I’d highly recommend both the Barbie and Oppenheimer films if that’s your sort of thing and you can tolerate sitting in a cinema for hours. Somehow Barbie is a hilarious modern feminist fable based on the toys, whilst Oppenheimer is an incredible character study biopic that reflects on the wisdom of using nuclear weapons. Didn’t quite have the energy to see a “Barbenheimer” double-bill in one day, maybe once they can be viewed at home though!
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Hi @Duncan I have not seen either film…yet.
Such a contrasting 2 films but somehow they work as a duo.
Thanks for the thought.
Lovely sunny, albeit fresh, morning here, just off for my walk but put an extra layer on as meeting a friend that walks a bit slower than I usually do.
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Hi everyone, doing ok thankfully with my 3 Hydroxy per week for Polycythaemia vera (PV). Last apointment was 1st August, my Hct was 0.42, my platelets were down to 468 from July reading of 575 (normal reading 140-450) without any increase in hydroxy although she had been offering me an extra ‘sweety’!! of 4 days per week as against 3. Had to explain to her that they were knocking me out & my hair falling out to be unmanageable, I protested slighly so she left me on 3 per week.
Since I went back on hydroxy, which I had been off for 2 months following an accident, painkillers prescribed in A&E were ever so strong (am on warfarin) hence limited as to what they could prescribe due to interaction of other drugs with warfarin, they played havoc on my stomach & couldn’t take any meds other than the odd paracetamol.
Had just got back to taking hydroxy when my appointment was due in Haematology. All my blood readings were within the normal range!!! I had asked for a prescription renewal but was told I didnt need any medication or else after 2 months without any treatment whatsoever! My platelets were 438 on 9th May. June appointment 4 weeks later, had to go back on hydroxy again as platelets were elevated to 575. Have the printout of blood tests here in front of me.
Now, for the last month the itching has started…hadn’t any itching prior to diagnosis back end of 2021 & only minimal all along until last few weeks where a lot of spots have cropped up on shoulders back of neck & down my arms…forgot to ask for a prescription as so anxious to flee from Hematology unit, hoping the spots would fade away.
I have taken note of the prep mentioned for itch & will check it out. Trying to apply a little more moisturiser on skin at the moment until next appointment.
Just hope Polycythaemia vera (PV) sufferers will get a bit of courage from blood readings & thd fact that I got by for 2 months without having to take any sweeties!!! As am accident prone, have a ruptured ligament in arm, cant do the exercises for balance, stiff joints, etc which I had just located on UTube…very simple, ie like holding on to back of chair, standing on one foot to balance or walking heel to to toe holiding on to worktop. While Pilates & Yoga are very good, saw my poor neighbour had a badly damaged back after pilates & was off the radar for months. A very fussy lady who would have abided by the rules & wouldn’t have taken it on herself to go those few extra stretchs!
Apologies, have gone off on a bit of a tangent here, but with inclement weather etc, lots have to pull back on outdoor ex. Just trying to help others, & of course myself!!!
Cheers Polycythaemia vera (PV) Mags.
…
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Hi @PVMags I am starting at the end of your post and the balance exercises you mention we do at my Pilates class, the simple ones are often the best ones and I can also do them in my own home.
I have to say I am a Pilates girl and it has saved my back. Perhaps your neighbour must have been very unlucky in her experience.
I walk nearly every day of the year, unless it is raining or slippery. I actually prefer the winter as I can always put an extra layer on, but there is only so many layers I can take off in the hotter weather. I am a great believer in fresh air as well as reasonable exercise.
There has been a lot of posts about itching and spots on here recently so please do bring it up at your next appointment.
If you are anxious you might want to write down all your questions before your appointment and make sure you cover them all before fleeing.
I think it is natural to be anxious before and during all tests, results and appointments.
Please do let us know how you get on and really be kind and look after yourself.
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Exactly! It helps that they’re both directed brilliantly by excellent filmmakers and they star incredible actors. I could talk about film for hours so I’ll end there before you nod off! Glad you got some fresh air—that’s my preference over hot days too for the same reasons. Easier to manage under-heating, like you say! Having a heatwave where I am which has been rather grim for me and my furry little hound so I’ve been enjoying iced drinks all day and he’s laid where all the cross-breezes meet 
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Hey there @PVMags, really sorry to read that you also have Polycythaemia vera (PV), but it sounds like you’ve had some success with the treatments which gives me hope. So horrible how it’s affected your hair and energy—I’m both bald and experiencing the dreaded cancer-related fatigue so can empathise with all that being tough to live with, although my hair has been falling out naturally for many years. Apologies for my ignorance about a delicate topic, but will your hair grow back? My haematologist didn’t mention hair loss to me as a side-effect of taking hydroxyurea so this is news to me.
The more I learn from other Polycythaemia vera (PV)/Myeloproliferative neoplasms (MPN) survivors, the more I appreciate how different our experiences and treatments are. I take hydroxyurea every day, while you have it 3 days a week. I’m having fortnightly phlebotomy but you didn’t mention having that. Do you take daily aspirin like me? Really glad your numbers have come down, even though it seems like they’ve increased at times too. Just had my complete blood count for the first time since starting chemotherapy and phlebotomy and they worked really well, bringing me closer to my haematocrit target of 45 % and normal range for my red blood cell and platelets. I don’t expect it will always work so well, but obviously I hope treatment keeps doing its job. Not had itching, but I’m grateful for your tip about moisturising should it occur. Does any moisturiser help, or does it need to be medicinal? I have all sorts of lotions and potions but mostly moisturise with argan oil as it’s nice and light and not smelly. Wonder if CBD lotion would help the itching? I find CBD is great for reducing inflammation generally.
Sorry also to hear about your friend hurting herself doing Pilates. I injured myself doing yoga many years ago without stretching properly beforehand and brought that lesson with me so I always stretch a bit first before any exercise now. I’ve had a few yogi friends over the years and apparently they don’t need a licence to practice, unlike other healthcare professionals. Perhaps it’s the same with Pilates and your friend unfortunately had a rubbish trainer, despite being fussy herself? Don’t let it stop you exercising, there’s always a way around our predicaments I find!
Like you I also recently had a very damaged ligament, in my ankle, so sadly I can also empathise with how your arm may be feeling, and how movement can be really affected. Very frustrating! I found my ankle began to feel like it was healing most noticeably after I started adapting the RICE (rest, ice, compression, elevation) method to include movement as well as rest, which this doctor-assessed article describes pretty well, should you be interested: RICE Method for Sprains: Pros, Cons, and Process
I’ll keep my fingers crossed that your Polycythaemia vera (PV) numbers keep improving and your arm too, @PVMags!
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@Duncan - Everything is going OK thank you for asking… after a fashion! Had some bad news after a routine CT scan that I have some blood clots in one of the channels of my brain which was a bit scary to say the least and they very nearly admitted me. Ironically I had felt the best I had since pre-diagnosis and was doing really well before this latest news hit! I’ve then had 3 weeks of appointments, monitoring and various medications which has left me exhausted and stressed - more so because I felt I wasn’t being consulted at all about my healthcare along the way, my lifestyle wasn’t being factored in at all and no-one was explaining anything to me or even telling me that this would be lifelong medication. I was simply given a leaflet! Thankfully I got to see my consultant earlier than planned as a result of the scan results and she was very empathetic and understood immediately that the medication I had been prescribed was not compatible for me and my lifestyle. In consultation with my GP, my consultant has since switched me to another blood thinner which doesn’t need monitoring, which doesn’t interact with food and drink so is far less restrictive, and which doesn’t involve fortnightly/monthly clinics so I feel like I can finally get back to my life. I’m feeling much better mental health wise as a result as with just one discussion I felt I was finally listened to and that I was actually consulted.
In other news, I took a week of annual leave to get some respite and chill out, but sadly started to get severe headaches and I felt really quite fatigued. I coincidentally had my regular hematology appointment that week only to find my levels were above my threshold so I had to have another venesection (particularly important because of the blood clots). This was my first one since April though and they did predict I would need a venesection every 2-3 months so pretty much bang on. Near enough immediately I felt so much better and the headaches have all but disappeared and I now have a much clearer understanding of warning signs that I’m reaching my threshold - it’s all a learning curve at the moment! I had a further hematology appointment last week (levels at 0.42) and a follow up today (levels at 0.41) so the blood thinners are definitely working and I’m feeling good, if a little bit stressed! I now don’t need to go back for 2 weeks and so no appointments for a blissful 14 days so perhaps I can finally have that downtime and relax.
I’m actually getting very into Aromatherapy and have found that burning lavender oil is as effective at dissipating headaches as paracetamol is! Like you, I want to get back into Yoga so have treated myself to some recommended DVDs so I can not only exercise again but also have some mindfulness to just forget and concentrate on breathing and movement for a while. The physical benefits are just an added bonus!
It sounds like you are doing well all things considered and I’m glad your first venesection went so well. It can be a bit scary the first time when you don’t know what to expect, but actually the procedure (which I always feel is one up from leeches!) isn’t that bad and is an efficient way to help you feel better quickly. I had to have 4 venesections within 2 weeks when I was first diagnosed so one every 3 ish months is no bother at all to me now!
Hope that you continue to feel well and that your treatment continues to go well. Like you I cannot fault my main team and the care they are giving. Thank goodness we have people who want to do this often thankless job. Like you, I always make sure to give effusive thanks as they have been key in guiding me through this rather bumpy ride!
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Oh @CarolineL how wonderful to hear from you.
You have really had a lot going on.
I have no experience of aromatherapy, thanks for your experiences I must give it a try, all I can smell at the moment is the dinner cooking, not the same.
I found my Pilates DVD’s were brilliant during lockdown and I could do them at whatever time suited me.
My walking and music really clears my mind and de-stresses me.
I have also been so, so impressed with my medical team, aren’t we lucky.
Really look after yourself and please keep posting
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Hi guys
I’ve just been diagnosed with type 2 diabetes the tiredness is off the scale at the moment but I’m cutting out the choc and biscuits having a little cake lol but back in the gym so hopefully I can turn it around
Tony1867
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Oh @Tony1867 that must have been a bit of a shock being diagnosed with Type 2 diabetes.
Please do let us know how your diet changes work and make you feel. Yep, back to the gym as well and how you get on.
I am copying 3 links to you from the Blood Cancer UK website on eating well, fatigue and keeping active.
Blood cancer and eating well | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
Blood cancer and keeping active | Blood Cancer UK
Take lots of care of yourself and please keep posting how you are getting on.
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Thanks Erica
and thanks for the links much appreciated I hope I can reduce the numbers down with the type 2 and I will keep everyone informed of the progress.
Tony
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