MATEs FORUM

Sorry to hear about your accident, Steve. Hope you recover soon. Did your MPN and VW affect your treatment and do you think your recovery is likely to be slower? Looking ahead to when you are able to resume cycling have you tried the M7 cycle way where I believe bikes are segregated from vehicles? A...

Hi Steve Sorry to hear about your accident and the loss of your treasured bike. But as others have said, 'You are extremely fortunate to still be here to tell the tale.' I'm sure you have relived the moments leading up to the collision many times over. I don't fully understand what 'merging across i...

Hi Pete I am also ET/CALR. I was diagnosed in 2006 and was on Hydrea until 2019. It controlled my platelets initially but I experienced numerous skin cancers (bcc and scc) and a recurring ankle ulcer. Eventually I developed cyclical thrombocytosis but fortunately Pegasys became available on the PBS ...

Hi Steve Sorry to hear you have been having a tough time lately. Hopefully your blood results will throw more light on the cause. The photo of your fingers reminds me of a problem I had with my toes around about the time I started on Pegasys. It coincided with the general itching problems I've been ...

Hi Steve
Pleased last Sunday's meeting well went well - sorry I wasn't able to make it again but as you are aware, that is not a good time for me these days.
Thanks for providing a summary of proceedings. That's very useful for those of us who were unable to attend.
Cheers
Allan

Hi Mark
Hope your appointment goes well tomorrow. It will be interesting to hear your haematologist’s thoughts on your allele burden result.
Cheers
Allan

Thanks for posting this Steve. Exciting developments!!
Allan

Hi Katie
Sorry to hear your platelets have not responded well to Pegasys, as yet. I have been on Pegasys for over 3 years including almost 2 years on 120mcg/week and it is only recently that my platelets have come into normal range. So hang in there, Katie.
Cheers
Allan

Hi Mark I’m pleased to hear that Pegasys has worked well for you in lowering your platelet counts and possibly in reducing your allele burden. I seem to recall that you were previously on Hydrea and had significant skin cancer problems. Have you remained clear of those since being on Pegasys? I have...

Thanks for the update Steve. Will look out for details.
Allan

Hi Rosie Firstly, to correct the record, I am not a pharmacist. I was a chemist, now retired, with experience of working in the pharmaceutical industry. If your haematologist advises that you take antivirals with you to Fiji then it would be wise to heed the advice, albeit costly. At $1100 the gover...

Re: Covid treatments – UPDATES An update. It is my understanding from reading the revised Health information that all over 18s with an MPN should be eligible for oral antivirals if we test positive for Covid. https://www.health.gov.au/health-alerts/covid-19/treatments/eligibility The challenge may ...

Thanks for posting information about these antivirals, Steve. With the continuing high number of Covid deaths in Australia, particularly among aged care residents, I wonder how many of those unfortunate people are being prescribed antivirals. They would certainly qualify from the criteria listed. I ...

Hi everyone. Unfortunately I shall be unable to make it to the Café Catchup on Sunday. Steve suggested Covid treatments as a discussion topic so I thought I would include my contribution here. My haematologist said that if I test positive I should be treated with the antiviral Paxlovid (preferred) o...

Hi Carmel I live in Sydney and was diagnosed with ET in 2006 after elevated platelets and a BMB. For a year I was on aspirin only but as platelets increased I started Hydrea. Over the next 13 years the dosage was increased but my platelets were not well controlled. I also suffered side effects of nu...

Hi Steve
I should be able to make that okay.
Thanks for arranging it.
Allan

Afternoon Allan...

Just advising on Cafe Catchup Date change:

UPDATED – SUNDAY APRIL 10th, 2022 at 6PM

Hi Katie & Steve I developed significant floaters within 2 weeks of starting Pegasys. I was referred to an ophthalmologist who doubted Pegasys was the cause since floaters were not listed as a side effect on the drug information sheet. I doubt however that she, or any other doctor for that matte...

Hi Katie The annoying side effects I experience are - floaters - dry eyes, particularly when I wake up (I routinely use eye drops) - light sensitivity (I usually have to wear sunnies even when it is overcast) - itchy patches on the skin and scalp - no tingling but cold, numb fingers with the onset o...

Hi Warwick Very pleased to hear that all is progressing well now - you are certainly looking healthy :). Are you able to get out and about yet or is it still too risky until your immunity has built up? I'm sure we are all eager to keep getting updates about your journey. Keep safe and best wishes. A...

Hi everyone I had my 4th jab on Wednesday; Moderna this time, following 3 Pfizers. I have found the side effects have got more pronounced each time. Yesterday I was feeling really rough with headache and achy limbs but today I'm feeling much better with just the usual sore arm. I'm pleased I am as p...

Hi All I had my 3rd Pfizer 4 days ago. My reaction to Pfizer has got slightly worse each time. This time I was feeling quite rough on Day 2 but I've improved and I'm just left with a slightly tender injection site. I'm feeling better protected now but will continue to be cautious and avoid crowded a...

Pleased to hear you've had your first jab, Steve. I agree that you are probably at greater risk from Covid than from the vaccine, and with the numbers on this side of the city being what they are and the planned easing of restrictions in 6 weeks, life will get very tricky for the unvaccinated. Incid...

Thanks for posting this Steve. An interesting preliminary study which, as the author suggests, was somewhat limited by the relatively small number of participants. There are so many variables with MPN patients e.g. MPN type, mutation type(s), therapeutic treatment, blood counts, medical history etc,...

Thanks for posting this, Steve. As you say it refers quite broadly to blood cancers, with no specific mention of MPNs. I feel more comfortable now that I have received two vaccinations but I expect I will continue to take sensible precautions even when the current Sydney lockdown finishes. Best wish...

Hi Warwick Thanks for updating us on your progress. You are certainly having a long hard time of it with setbacks, repeat stints in hospital and now having to cope with the Covid restrictions. However your positive outlook is impressive and is a lesson for those of us with far fewer problems to cont...

Thanks for posting this, Steve. A very interesting article.
Allan

Hi Blood Zero and welcome to the forum. I was diagnosed with ET in 2006 and was on Hydrea for 13 years. As time went on my platelets became variable and poorly controlled and I experienced several skin cancers. I changed over to Pegasys 18 months ago. My platelets are more stable but have not decrea...

Initially both my GP and haematologist recommended I be vaccinated at the earliest opportunity and so I booked an appointment. After the first few cases of blood clots with the AZ vaccine, and the mechanism of clot formation, were reported I had second thoughts. I told both doctors that I thought th...

Hi Jaqi I'm pleased to see that you've received reassuring advice from Steve and Maria who both have a similar diagnosis to you, and I don't think I can add anything further as I still at the ET stage. I was diagnosed with JAK neg ET back in 2006 following increasing platelets levels and a BMB. CALR...

Hi Steve I'll add my congratulations and admiration for your achievement. As I mentioned to you before, I was concerned at one stage that you had run into serious difficulties and hadn't made it. Considering your MPN symptoms, I think it is remarkable what you have achieved. I know you have a lot to...