Oh goodness, @CarolineL, blood clots in your brain?! That’s some scary stuff!!! I am not surprised you’ve been exhausted and stressed. Every stage of all this can feel so knackering, but that sounds so life-altering and terrifying. Really glad you’re through that now. Hopefully you’re finding ways to express it all so you don’t have to hold onto it? A leaflet is not enough in these scenarios, you need a human to sit with you and let you ask questions to make sense of the adaptations and medical interventions you’re tolerating. Sounds like they might have been rushing you through all that healthcare as you were experiencing something very serious, like how I was swept into various treatments after my heart attack and was too spaced out due to morphine to really gauge what was occurring. Lived to tell the tale like you, so something worked, right?!
Really glad you were able to change medicines so as not to limit your lifestyle so much. Being heard by our doctors really is so important—for me, it’s as important as the treatments as I have to be a willing participant for them to work and that’s not going to be so likely if I’m being treated merely as some statistic by a patronising all-knowing doctor. My haematologist is a little like that, having told me his other patients don’t respond so sensitively to their chemotherapy while I was thinking “well, I do so treat me and my symptoms!”
So your bloodlettings are less often than my fortnightly ones, but mine will be less frequent once my haematocrit decreases to its goal of 45 %. Really glad they helped reduce your headaches. I noticed the dull headache I had since starting daily hydroxyurea stopped after my first venesection. I also noticed my fatigue decreased afterwards too, thank goodness. My personal theory is that not only does the bloodletting remove blood, it also flushes out the leftover chemotherapy-disrupted detritus floating around in it, helping me have more energy for day-to-day stuff and less spent on tolerating the hydroxyurea’s side-effects. Totally unscientific theory of course, but maybe the great specialist nurses on here can share more about how hydroxyurea actually works, @LauranBloodCancerUK, @Heidi_BloodCancerUK?
Love that you’re using aromatherapy and yoga. I’ll still have the occasional bath with essential oils in it. Did a long session of yoga this morning actually and still have the energy to be thinking and typing now so that seems like a good sign of its efficacy! Don’t know if you have an Apple TV/iCloud account but there are great yoga sessions by many different teachers in their Fitness app so I’ve been doing those via my TV! Feels very 80s somehow
Nice to know you’re adapting well to your treatments @CarolineL, even those 4 venesections within a fortnight! Wouldn’t have thought I’d ever say this, but I think I’ll be okay with future bloodlettings. Now I can visualise the ward where they happen and its views over the park one way and the hills the other which already feels calming. It really is about getting to know one’s threshold and adapting to it, whilst lovely nurses guide us through the worst of it.
Be well and I hope you enjoy that glorious fortnight in between appointments!
Oh goodness, @Tony1867, that is a lot to be dealing with! I’m so sorry to read about the diabetes diagnosis. From my understanding type 2 diabetes is treatable with many of the treatments recommended for us cancer survivors, like the regular exercise and adapting what we eat, so I bet reducing its symptoms will be something you can totally achieve. Shame about missing that chocolate though, I think of it as being medicinal! Really glad the diabetes was caught now so you can work with it.
Hi Duncan, my sincere apologies for not getting back to you until now with a few answers to your questions. I am a Polycythaemia vera (PV) patient, initially I was just having venesectios, then the Hydroxy was prescribed. Had to have a meeting with Haematologist as I was almost knocked out with Hydroxy, which left me almost housebound as hadn’t energy or inclination to even meet up with friends for a coffee let alone a lunch. He gave me option of changing to another drug. I simply wasn’t ready mentally to try a differerent one.
The other options were to have venesection alone, or a combination of venesection & hydrea. He was so anxious that I’d take the Hydroxy for 7 days initially, that I simply hadn’t the courage to decline Hydroxy altogether. He reduced dosage to 3 days a week at that point & depending on the HCT reading, they would do venesection. Had one at beginning of year, didn’t have any since due to reading of 45, 41 previous time. That’s my story until next appoint in 3 weeks time.
I often wished I could have had venesections as feel on fire at night, the drenching sweats are also adding to the severe fatigue.
Just by the way, 2 GP’s in the past didn’t pick up on my discussion with them re dreadful night sweats, clothes & sheets saturated. I was well & truly past menopause so that was ruled out. One GP told me I was just unlucky!!!
What else could I say until I got the Polycythaemia vera (PV) diagnosis following a clot on my lung.
I had a clot in my leg which showed up on ultrasound approx 7 months prior to lung clot. At that point I was prescribed warfarin for 6 mths. Taken off it then until the lung clot appeared approx 3 months later. You asked me if I had been on asprin.
I asked Haemotologist if it was necessary to be taking warfarin & hydrea concurrently when they had diagnosed via tbe blood test that I have Polycythaemia vera (PV) which caused the blood clots, it would seem, initially. They didnt seem to know! hesitated, probably was better to continue with the warfarin!!??
With regard to hair loss, my hair is steadily falling out in full strands. Can see them in handbasin whilst brushing my hair. Worse still, I was horrified to see a strand had landed in my dinner plate fairly recently. No, it won’t grow back as long as I am taking hydrea. It was beginning to grow back when I was off hydrea for a couple of months back in the Spring.
I have to do quite a lot of my own digging re side effects of these drugs before I discuss a possible change over to an alternative one.
I still have itch on my shoulders mostly & down my arms to elbow area. The odd pimple in my scalp, lower limbs havn’t been affected so far. I had read to use a moisturiser regularly. There is an ointment available I was told, way back when I was first diagnosed with Polycythaemia vera (PV) but didn’t have any rash back then. Suppose the ointment would turn out to be another chemo product!!
I cannot, for obvious reasons of course, recommend any moisturisers to others, but I did use one which is perfume free, found it very soothing, need to chase after more of it. Can be bought over the counter in Supermarkets, chemists. Name begins with an S, that’s as far as I can go. I hope Duncan, things are going well for you & that bloods are
keeping reasonably well. I try not to think about this Polycythaemia vera (PV) too much, it is at least treatable, a bonus comparative to other conditions. Best of luck & best wishes. Polycythaemia vera (PV) Mags.
Hello again @PVMags, no need to apologise for anything! We survivors don’t need to feel obligated to reply straight away when we have so much other stuff going on, but I really do appreciate you taking the time to respond.
Sounds like the dreaded cancer-related fatigue hit you as soon as you started hydroxyurea, just like it did with me. My fatigue was terrible and I got very depressed about how little motivation or energy I had to do even basic stuff after I’d started taking hydroxy. However, it seems to have improved alongside the fortnightly phlebotomy I’m having. In fact I tend to have ‘normal’ energy after my bloodlettings for a few days. Well, normal for me is being able to get domestic chores done and still have energy for hiking and socialising. Brain’s still a little foggy in the mornings though, regardless of where I am in the phlebotomy cycle.
I’m really sorry to read about those clots you’ve experienced, and the sweats. How terrifying! At least they were found, right? Interesting that you’ve not had confirmation either way about taking aspirin. I think it’s less advisable for older folks due to extra contraindications. Like I said in a previous post, I’ve taken daily aspirin since my heart attack 10 years ago to thin my blood and haven’t experienced any side effects that I know of. Perhaps you could ask your doctor to do their job and look up whether aspirin would benefit you too. Maybe the specialist nurses on here have some information?
Really sorry to hear about the hair loss on top of all the other physical symptoms like the sweating and itching. I understand how losing hair can affect one’s self-esteem and even how we are perceived by others. I imagine in women it’s worse due to it not being so common, and because society adds undue pressure to present in certain ways. I would say, try to find a positive to it, if impossible. For me I’m glad I no longer have to worry about faffing about washing and styling my hair anymore (well, aside from my beard). Saves money on hair products too! Wearing hats can help when feeling self-conscious, and they protect our scalps from UV light and increased risk of skin cancers. I know how we look is not as important as our health, but it can affect our mental health so I think it’s valid to spend time figuring out how to live with hair loss. It definitely felt a bit like grief for my former mane of hair when it started thinning. Maybe now is the time to play with your image?!
Thanks for your best wishes. I’m in the learning stage and adapting to the frequent phlebotomy and chemo-brain and fluctuating fatigue. My third bloodletting last week was really slow as my blood was “thick like molasses” presumably due to being dehydrated from camping before. The phlebotomist was great though and after an IV of saltwater enough blood was let. Definitely need to drink more water in advance of bloodlettings in future! Still managed to bring my haematocrit level down a bit despite my molasses blood so that gives me confidence the treatments are working.
So I’ve been umming and ahhing about sharing some good health news because, well, it can be hard to hear it from others when you might not be having good news yourself. Also, it’s just not very British to be openly optimistic But there could be other Myeloproliferative neoplasms (MPN) survivors having a crappy day who might benefit from hearing that all these treatments we go through and tolerate can really work as intended.
After just 3 months of daily aspirin, hydroxyurea, and fortnightly phlebotomy, I got my haematocrit level down to below the goal set by my haematologist! It’s been a pleasant surprise to see my platelets and red blood cell numbers decrease at each complete blood test I have, and my haematocrit followed along and is now in the normal range for the second month in a row. I no longer need to have phlebotomy, although I miss the nurses!
This has really cheered me up—the science worked! What’s been especially great as treatment continued was my vile fatigue, touch wood, almost entirely faded. It feels like my energy is back to my pre-diagnosis levels. I was an active person and losing the energy to get out and about was depressing and disabling for me. This improved energy feels like respite at least, if not recovery to the before-times at best. Shame I can’t undo the gene mutation too, but I’ll live in hope that science can sort that out too…
So I just wanted to share with others that treatment can sometimes go smoothly! Stick to it, even the grim parts, and hopefully you’ll have equally positive responses to share on here with us all.
Thank you, @Erica! You’re a big positive influence on me during all this, so I hope to emulate you in any small way, sharing good stuff along with the tricky. I’ll see if I can get any good snaps at the gig later!
Good afternoon @Duncan, and everyone else. Duncan, I’m really chuffed to hear your good, if not GREAT, news and hope that the positive vibes will continue now, helping you to get back to where you were before diagnosis.
We place an inordinate amount of faith and trust in both the medical professionals that we meet, as well as the medications that they use on, and in, our bodies and it is wonderful to hear of your success.
I am also very happy to hear that your fatigue levels have recovered, that must feel like a huge win for you.
Stay safe, take care, keep on smiling and be kind to yourself.
Really had no idea of what to expect before treatment began, and my haematologist hasn’t exactly been forthcoming with feedback on my test results, so it’s felt like a slow sort of success of my own doing which adds to the feeling of achievement.
Got another complete blood count on Monday to see if I need phlebotomy next week, so I’m keeping fingers crossed that my haematocrit has stayed normal for the third month in a row so I can avoid bloodletting!
Hope you’re doing well too, @Jimbo165, and that autumn is treating you well so far.
So happy to hear that you have got to your target levels and are feeling almost back to normal. It’s all we can really hope for but I do think that when we are first diagnosed with Polycythaemia vera (PV) that it is a shock and takes some time to mentally adjust which adds to the fatigue and exhaustion.
Since moving from Warfarin to Apixaban I’m doing really well. I feel like I’m back in control of my life and not restricted with foods and drink which takes a lot of pressure off and has elevated my mood. My monthly haematology visits have all been positive recently - at one point my HCT was down to 0.39 but has now stabilised at around 0.41/0.42 so still well below my threshold of 0.45 - to the point that they have said I now don’t need to go back until January 2024. That’s a little scary as the monthly visits have been strangely reassuring and 2 months without any monitoring is a bit nerve wracking, but I have to trust that they know what they are doing and of course they don’t actually want me to get ill!
I’m still getting fairly frequent headaches but think this largely down to iron deficiency (the other joy of Polycythaemia vera (PV)) and stress. I’m trying to take time out at the weekend to destress and have proper downtime and am using alternative therapies like aromatherapy to relax. I have to keep reminding myself that it’s only been 8 months since I was diagnosed and I’m still getting my head around everything so need to be kind to myself - something I think we all need to do a little more of!
Thankfully the headaches dissipated for a couple of weeks just around our fifth wedding anniversary and I felt better than I had in a long time, so we had a lovely weekend away in London free from appointments and health issues. We visited the Cutty Sark and had afternoon tea under the hull, went to the theatre, did a 6 course tasting menu at an amazing vegan restaurant with wine pairings, visited Greenwich Market and ate street food, and I even went to see Madonna in concert! I think if nothing else, being diagnosed with a condition makes you realise that life is for living and when we feel well enough we need to make the most of it!
Wishing you all the best and continued good health and do keep in touch and let us know how you’re doing.
Great to hear from you @CarolineL with your update.
I like your philosophy for your new life.
I never thought I would type Cutty Sark and Madonna in the same sentence, wow, what experiences.
Happy anniversary and what a way to celebrate it.
Yep, be very kind to ourselves and look after yourself
Aww @CarolineL, thank you so much! It’s so great to hear that your treatment is going really well, plus the greater freedom with what you eat and drink. I got a nice bounce in my mood after I reached my targets, so it’s really lovely to know you did too. Those boosts in mood will keep me going, I bet.
I know exactly what you mean about the space in between appointments feeling a little scary—like you say, the familiarity of the routine changing can bring up all sorts of feelings. Have to say that I’ve very much enjoyed not having to go in for phlebotomy and filled my time with all sorts of my favourite activities, including gigs like you—went to 4 in just over a week recently! Looking forward to all the smaller, more interesting films that tend to get released now leading up to awards season in the new year. Some wintry hikes ahead methinks, plus stuffing myself with roast dinners, and my own big aluminium wedding anniversary coming up already. Where does the time go?!
Annoyingly I spoke too soon and since my CBC yesterday showed that my haematocrit and red blood cells have increased again I need to go in for phlebotomy tomorrow My levels are still within the normal ranges but higher than my target so in I go for more bloodletting. Kind of looking forward to catching up with my phlebotomists and treating myself after with some kind of vegan bakery delight!
What’s been interesting on a somatic level since my previous CBC is that I felt like I’d probably need to go in again this month for phlebotomy. Nothing major happened physically, just a sense that my blood was harder to pump around and that—like you again—headaches became more noticeable. And lo! Blood tests show those increases. Weird to be sensing it more.
I’m so glad your Polycythaemia vera (PV) gave you a break for your anniversary though, such excellent timing!!! As a fellow vegan may I ask which restaurant you went to? Used to love Terre à Terre in Brighton for special vegan occasions I don’t seem to be experiencing low iron despite my veganness, although I occasionally take an iron supplement (shh don’t tell my haematologist!). I also don’t menstruate which I imagine can affect iron levels a lot.
Really chuffed to hear about your positive results, @CarolineL! Nice to be able to share those with you on here with others. Try not to worry about waiting till January for the next stuff, you’ve got a lovely long break from treatment to enjoy in the meantime!
Oh no! Sorry to hear that you need to go in again this month but I suppose it has to happen at some point. That’s the trouble with Polycythaemia vera (PV), just when you’re feeling well and starting to think it’s all under control levels shoot up and need addressing!
My iron is a bit of an issue and unfortunately most Polycythaemia vera (PV) patients will have low iron at some point due to the venesections and stripping iron reserves. The headaches I’m getting are very mild and bearable, so I know it’s not Polycythaemia vera (PV) related, but the only solution I’m being offered is Hydroxycarbamide which I’m really reluctant to go on. I don’t like taking drugs at the best of times and prefer more natural solutions (difficult with Polycythaemia vera (PV)!), so the thought of chemotherapy based drugs is very daunting and with all the potential side effects I just don’t want to take them right now. I suppose it will come down to a choice between what makes me feel worse - the iron deficiency effects or the potential side effects and restrictions that Hydroxycarbamide will bring (such as having to be extremely careful in the sun etc.) I keep thinking there must be other options but my Consultant is only pushing this drug every time I see her and not offering any alternative solution which is frustrating. She is a brilliant Doctor and has been so understanding and empathetic since diagnosis but we are definitely locking horns over this!
I’m so glad to hear that you have been doing things that you enjoy and having a decent break from treatments and that you have your 10 year anniversary coming up - lots to look forward to! I love this time of year (hence why we got married in October!) so wintry hikes and cosy roast dinners sound a fantastic to make the most of the season.
The restaurant we went to in London is called Studio Gauthier. It’s a more informal offshoot of Gauthier Soho (which is next on my list!) and is the 123V vegan bakery/vegan light bites/vegan sushi bar during the day and a full blown restaurant from 6pm. It’s on Stephen Street, just off Tottenham Court Road, at the BFI head office and is really beautiful. The owner, Michelin Chef Alexis Gauthier, literally went into his restaurant in Soho one day and looked around at all the carcasses and had an epiphany that it was entirely wrong so made his restaurant vegan overnight and has never looked back! The tasting menu at Studio Gauthier is £65 per person, which is a complete bargain for 6 delicious and beautifully presented courses, and the wine pairing is £45 per person - not an everyday restaurant but worth every single penny. Every course was delectable and the sauces were out of this world and elevated each dish to a whole new level - they have an incredibly talented chef. Each time you went it would be different as well as the menu is ever changing due to being seasonal ingredients. It’s worth signing up to their newsletter as they do offers like 25% off gift vouchers (which saved us £50) and you can future date the vouchers too if you don’t think you’ll use them straight away. They also currently do offers throughout the week like buy one get one half price on the tasting menu on Thursdays which really would be a bargain. It’s well worth a visit and the staff are all so lovely - knowledgeable and attentive without being overbearing. I’ll send you the tasting menu & pictures I took in a private message but I honestly can’t recommend it highly enough. They even do film themed cocktails - we had a Julie Christie each which was an elderflower, apple and lychee martini and was as delicious as it sounds!
All my symptoms are generally from low iron so I’ve agreed with my Haemotologist that when I get bad or incredibly low I get an iron infusion. Which though is counter productive, I need it for quality of life/ wellbeing.
It is always heavily monitored though.
I too was being pushed on to hydroxycarbamide. Same fears and concerns as you, but my excellent haematologist basically said do you want to prolong your life or not! And I really couldn’t argue with that!
I’ve been on it for a few weeks, and though tummy aches a little and a small case of nausea at times (but not throwing up) has happened, thankfully nothing major has happened and I’m due an appointment today to see what the initial results are from a months treatment are.
The thing to bear in mind is that Hydroxycarbamide is the most tried and tested course of treatment. It’s the only one with back data of effectiveness for Polycythaemia vera (PV) treatment.
Yes it has its pros and cons, it’s pleasant and horrific experiences but one thing to note is that any new treatment or alternative treatment that comes out will only go to people to whom hydroxycarbamide wasn’t working. But you need to have been on it for a few months.
I really think having a heart to heart with your haematologist and your clinical nurse outlining all your concerns and questions and for them to professionally answer and listen is really helpful and useful going forward.
I’m sure the support line here will be able to help you structure the discussion if you’re struggling to get started on what to say.
But all your worries and concerns are completely valid and I’d be a hypocrite to say I wasn’t the same.
My main concern is that if I go onto Hydroxycarbamide that I will never come off it. If I was older perhaps I would be more willing to try it, but I’m only 47 and the thought of being on chemotherapy tablets for 30-40 years is appalling to me. If new drugs come out (which I’m assured my friend who works in haematology are coming) and I’m already on Hydroxycarbamide then I know I wouldn’t be offered an alternative and would just be stuck on this drug which sounds terrifying and which almost everyone has side effects from.
I’m not suffering much at all with low iron bar the odd mild headache, although I am aware that long-term low iron is not good and can cause further health issues, so whilst I’m still feeling generally well I’m really reluctant to go on a medication which is likely to make me feel far worse than I do now!
Out of interest, have you felt better/more well (other than side effects mentioned) on Hydroxycarbamide or is it too soon to tell?
I was initially on interferon for one and a half years and was doing extremely well with little to no side effects and levels maintained
Since I’ve had two heart attacks, 2nd a month ago so was heavily advised to move onto Hydroxycarbamide.
Four weeks in and I’m doing alright no major signs of the common symptoms.
Like with any treatment you can’t expect miracles straightaway and need to be patient. It’s about things moving in the right direction to eventually make things better.
Got to have faith in the process along with strength and bravery to ride it through.
So sorry to hear of your recent poor health and wishing you a speedy recovery.
As you said, it will take time to have a more accurate picture of how the drugs are working and if they are suitable for you and helping. Patience is certainly key!
My levels are still within the normal ranges but higher than my target so in I go for more bloodletting. Kind of looking forward to catching up with my phlebotomists and treating myself after with some kind of vegan bakery delight!
I don’t seem to be experiencing low iron despite my veganness, although I occasionally take an iron supplement (shh don’t tell my haematologist!). I also don’t menstruate which I imagine can affect iron levels a lot.