Morning @Jimbo165 - hope you slept well!
Do let me know how you fare with hydroxycarbimine, I’m rather like you and haven’t wanted to go on that medication so am interested to know.
It’s wet and windy down here in Sussex,
Have a good weekend
Gillyj
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Good morning @Gillyj, you’re an early bird too! Yes, it is very windy up here in Hinckley, and has been since the early hours.
The consultant did say that I will be even more closely monitored for the first few months to make sure that the correct level of medication is being used. She did say that the number of tablets taken will vary, possibly up to as many as 6 per day, but hopefully I wont get to that stage as I’m already on 9 tablets a day for my “dicky ticker”!
Stay safe today, and take care.
Best wishes
Jimbo165
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Hi @Jimbo165 and everyone else. Sorry to hear your platelets have gone up and you are changing over. I was told interferon was the best for me due to other medication that could interact with hyroxy. However they are still trying to get the correct dosage for me at the moment. When i was on 45 a week the platelets dropped but it interferred with my thyroid. I was moved to 45 every 2 weeks and then to 90 every 4 weeks to conserve supply. My blood tests however have showed rises since coming off the 45 per week and yesterday it was another rise. Thyroid function however is now much closer to the normal range. The dosage will be reviewed by my main London hospital (the experts) on the 23rd so we will see where we go from here. I am disappointed as it did work on the weekly dose and i have put up with these side effects for such a small lowering of platelets now. My body has always reacted well to medication in the past so it is annoying.
Anyway will need to chase my next injection next week for collection at the hospital pharmacy so we will see what i get.
All the best to everyone.
x
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Hello there @Jimbo165 and @Gillyj and others, I’ve been following along with the travails you’ve been sharing about stocks of Pegasys running low and I really feel for you and anyone else trying to just get your medicines, needles and so on. It would make me feel anxious, so well done for persevering with what you need. Glad your liver is doing better too @Jimbo165.
Just wanted to say @Jimbo165 I’m sorry to read about your recent test results and swapping to the dreaded hydroxyurea. I mean, it is worrying to think of taking daily chemotherapy capsules, just how carcinogenic are they?! Definitely my first concern when I looked up this medicine after being prescribed it. Sadly my first haematologist didn’t really allay any of my fears about taking hydroxyurea.
If I may reassure you of something my great new haematologist told me about my own chemotherapy concerns? He said that for decades hydroxyurea has been the main treatment for people with sickle cell disease, who typically start taking it in childhood, and yet as adults they don’t have a higher number of cancers than people who haven’t taken hydroxyurea.
Another thing that reassures me is that around the forum are many Myeloproliferative neoplasms (MPN) survivors who have taken hydroxyurea for years, sometimes decades. Their success taking it and living well with Myeloproliferative neoplasms (MPN) gives me confidence that I can too.
Personally, the only side effect I can put down to hydroxyurea is skin photosensitivity. In the sun, if I haven’t moisturised and put on a high SPF sun lotion, my skin can begin to feel fizzy. Kind of unpleasant! My skin is also more dry than ever, so I use an unsoapy emollient shower gel which helps. Oh and I wear rubber gloves to do the dishes now too.
So I’d say, yes hydroxyurea can make our skin dry and photosensitive which are side effects we shouldn’t ignore, but it also helps lower and maintain our platelet levels faster than other medicines we can take for Myeloproliferative neoplasms (MPN)—according to that blood cancer conference I attended earlier this year. I’ve taken it daily for over a year now and my platelets came down into the normal range quickly, which has been such a relief.
Apologies for any unasked for advice! Glad to see you’re thinking about some positives of taking hydroxyurea, like the lack of headaches, dear @Jimbo165. Do let us know how you get on.
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Hi @Duncan @Jimbo165 , it’s good to hear from someone on hydroxy whose side effects have been fairly mild. At the recent Myeloproliferative neoplasms (MPN) conference I attended quite a few people mentioned getting mouth ulcers and as a woman I would worry about thinning hair/ don’t think that one will worry you Jimbo! 
.
My platelets came down very quickly with pegasys so I’m hoping supplies will last for me to continue on it!
Look after yourselves everyone
Gillyj
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Ah yes I’ve heard about more frequent mouth ulcers when taking hydroxyurea too @Gillyj, good point. I’ve not noticed having that myself. I get the impression it’s skin with a thin membrane that can be affected more by thinner blood, perhaps hence why nosebleeds and gum issues can occur. Maybe mouth ulcers occur for a similar reason? This is where it would be handy to ask a specialist.
Really glad your platelets reduced by taking Pegasys @Gillyj and I hear your worries about thinning hair with hydroxyurea, but again this isn’t a side effect I’ve experienced. I should add that I am not a hydroxyurea salesperson, I’m just really chuffed it works for my Polycythaemia vera (PV) and hope it works for others without any side effects!
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Hi @Duncan
It’s great that you’re happy on hydroxy and that it works for you and 
it works for @Jimbo165 - I know he’ll keep us posted.
I think specialists would just say that everyone reacts differently and not everyone will have the same side effects, which is true about everything to do with blood cancer , we all seem to have slightly different symptoms even with the same diagnosis!
Take care
Gillyj
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Good morning @Chrispy, thank you for your kind words and I hope that you will be able to get your next “fix” from the hospital pharmacy. If it is of any comfort, I can guarantee that there are, for now at any rate, fewer people looking to deplete the remaining Pegasys supply, and by a factor of one! 
Keep us all posted please.
Take care, stay safe, be kind to yourself and keep on smiling.
Best wishes,
Jimbo165.
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Good morning @Duncan, I hope you are well and that the weather hasn’t been quite so wild over your side of the pond, and beyond! It has been so windy here that at one point I thought they were remaking Blazing Saddles. If you know the scene then you are of a certain age.
Thank you for your kind words and this is clearly the right time of the year to go on to Hydroxycarbamide as there will be less issues with the “heat and strength” of the sun as it appears to have gone into hibernation again today. Having said that, there will have to be various changes now, certainly in my sartorial elegance, with long sleeved tops becoming the norm, as well as waterproof sunblock for other exposed areas.
I really do hope that there will be some improvements in the frequency and intensity of my headaches, and I guess that time will tell on that one.
I will keep posting but I am only one caplet in so far, and have decided to take them at night so that any initial “unpleasantness” will occur whilst I am safely (hopefully!) in the arms of Morpheus!
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
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Good morning @Gillyj, thank you for your kind words and yes, I agree that we are all different and yet also the same in so many ways.
I too have my digits intertwined that the Hydroxy will work well for me and will keep you all updated.
Take care, stay safe and thank goodness the wind has eased off some now.
Best wishes,
Jimbo165
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Oh yes @Gillyj, definitely keeping my fingers crossed that hydroxyurea works for @Jimbo165, and anyone else who swaps over to it due to Pegasys issues. So true about how these medicines can have such different effects and how our Myeloproliferative neoplasms (MPN) are individual to each of us—I’m just hoping you have an easy time of it @Jimbo165!
Thanks for asking after me, dear @Jimbo165. We’ve somehow missed the worst weather so far this year, although we had a terrifying magnitude 7 earthquake the other day and then tsunami warnings 
Thankfully there was no major damage or injuries, so I’m glad the early warning apps worked for once!
I’d say that’s a great approach to taking hydroxyurea, looking ahead to the summer and protecting your skin. It’s honestly not a bother, just takes a tiny addition to your morning routine. You can also get outdoorsy clothes that have sun protection built in, so maybe mention that to those loving handlers of yours for gift ideas.
Headaches have not been an issue for me so I hope that’s the case for you too @Jimbo165. Just make sure to stay hydrated and carry around a water bottle so you have no excuse! I take my hydroxyurea at night for the same reason as you, although I did a test week of morning doses and noticed no difference or side effects. Easier just to take all my medicines together in the evenings I find. Will you be taking aspirin too to help thin your blood?
Anyway, maybe keep note of any changes in your body to see how/if the hydroxyurea affects you in the short-term. Do keep us posted, I’m wishing you the best with this treatment change @Jimbo165!
Hi @Duncan - are you in California- I assume so because of the earthquake warnings- that must have been frightening
Gillyj
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I am indeed, the beautiful Bay Area! We live with many natural threats so I’ve had to kind of desensitise. This was the first quake to make my apps go off so I took it seriously and jumped under the desk 
I saw that you’re in Sussex @Gillyj, my old stomping grounds! Lucky you, I hope it’s as beautiful there as it often was in winter when I lived on the coast, I miss it so much 
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Hi @Duncan, if I cross any other parts of my body then I’m going to struggle to either stand up or sit down! I really do hope that I won’t suffer too much in this change over period, or beyond that. I did have a Pegasys jab on Friday night and have now had two lots of the Hydroxy capsules, so there should be plenty of “stuff” wandering around my various systems now.
This change has come about because the Pegasys seems to not be working for me now as my platelet count has almost doubled in the last 7 weeks which, I am assuming, is not a good sign. However, I still have my sense of humour to keep me company.
I can only guess how disturbing an earthquake warning must be and hope that the situation has settled down now and that the Tectonic Plates are behaving once more.
As always @Duncan, take care, stay safe and be kind to yourself.
Best wishes,
Jimbo165
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Expecting some adaptations during this changeover period is a good idea I’d say, I imagine there’ll be all sorts of medicinal wanderings around your body that will need getting used to. Give it time. I had fatigue at first but then I went suddenly from no cytoreductive medicine to hydroxyurea—perhaps it’s an easier adaptation if you’re already used to taking Pegasys?
There are quite a few mild quakes here every year so, incredibly, I’ve got used to them pretty fast! It’s just the “Big One” I’m dreading most, which is predicted to do all sorts of damage to the West Coast. I do really worry about wildfires, although we’re pretty well protected by the foggy bay and hills 
Anyway, enough of my foreign correspondence! Be well @Jimbo165.
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Yes @Duncan I’m in Sussex - brought up in Somerset, lived in north London when I was nursing and met my husband, moved to Sussex 35 years ago with 2 children. I love the wooded ness of Sussex with its small villages. Visited California a long time ago now and thought San Francisco was amazing, but I gather it’s changed a lot now.
It’s fascinating how this forum brings people together from all over the world isn’t it!
Take care
Gillyj
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Aw you’ve lived in some lovely places @Gillyj, I know Somerset and London well thanks to travel, study and work, and I lived in Hove, actually for many years. Aren’t the South Downs stunning?! Had a great hike up the Downs the last time I was over that ended in Lewes for a proper pub lunch—certainly not available here!
Unfortunately I’m not a fan of San Francisco beyond its beautiful architecture and landscapes due to all the techie nonsense and gross inequalities. Thankfully the East Bay where I live is much more like a cross between Brighton and Bristol, probably why I feel right at home here!
And yes, the forum is quite the international melting pot, which I love. Haven’t found any equivalent groups based here and I’m grateful to the forum for not needing to!
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Hi @Duncan - you’ve certainly travelled! Sounds very nice where you’ve ended up- better weather than here anyway!
We are very lucky to have the forum and it’s great that people from all over the world can join it. It gives such a lot of support and it’s lovely to meet so many different people
Gillyj
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Ha you might be surprised by how much I miss the weather there, especially proper rain and those epic south coast sea storms. Did most of my travelling in my 20s/30s and am finally planted somewhere I don’t need to leave to dose up on vitamin D in winter!
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Good evening @Duncan, and everyone else “dipping in” to this thread, and thank you for your kind responses.
Well I am 3 doses in on the Hydroxy now and can report that there have been a few noticeable changes. I itch slightly less (thank goodness!) although the headaches are still there and (not) so gently reminding me to keep well hydrated, which I do.
However the biggest change, and one I hope will not last for long, is the diarrhoea, and (thank goodness again!) I’m glad that I was able to spell that correctly otherwise I might have had to use a shorter word that would have got me into trouble!
As always, stay safe and take care, keep smiling, be kind to yourself and Merry Christmas.
Best wishes,
Jimbo165
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