MATEs FORUM

Hi Everyone. Well in my last post I said I was waiting for my blood tests (including my first Allele Burden). Well they have both come in. Remember I was on an 8 week gap between injections and my usual blood test results were all within range. My platelets had gone up from 342 to 368 a rise but still within the normal range. I didn’t mention to Jacqui at the time but I was in the middle of a heavy cold that I brought back from Tasmania. It wasn’t until I saw my raised WCC that I realised the cold could’ve lifted my platelets as well. At the time of my Telehealth appointment with Jacqui the AB results hadn’t come in and we hadn’t finalised our conversation re staying on an 8 week cycle or not (due to the raised platelets). Since last September I’ve been steadily pushing out the time between injections from 4 weeks, then 5 weeks with a short stint of 6 weeks whilst on holiday, to now an 8 week stint. Over this time my platelets have risen from 311 to 368, so that has been definitely noted. As I said my AB results will have an impact on what will be the final decision. A couple of days ago Cecily texted me to advise that my AB results were in and that it was 5.9%. I am totally stoked with this result and whilst not remission it’s close enough for me.
Cheers
Mark

Morning Mark...

They are amazing results for your AB. 5.9% down from... what was the original AB?

By the way, are you also still awaiting a BMB result? Just curious if a comparison is being made there also... Thought you may have mentioned that there would be(?)

Nevertheless, an incredible result on the AB. Hopefully, it is still in decline and the next question I guess is: "Will you now keep pushing out the injections"?

Fascinating stuff Mark. Thanks for Posting

By the way, Anna, (aka BobbysMum), who has a Post below, has also recently Updated her last Post & thanked everyone for their replies etc...

Thanks again Mark... Very cool results & very promising too...

Steve

Hi Steve. Re a BMB, not at the moment. I’ve booked a F2F appointment with Cecily for mid March to discuss the AD result, so it might be discussed then. In regards to injection times, my view is I’d like to hold it at 8 weeks and see how my body handles that for the time being.

Thanks Mark...

As you said earlier, it's all great news in any event... However, the BMB would make for an interesting comparison, & especially if it shows less 'Fibrosis' present than the previous result...

Here's hoping that AB result is continuing a steady decline my friend...

Best

Steve

Hi Mark,
So pleased to hear your good news. I shall keep my fingers crossed for you that you go into complete remission. It is great to hear someone has such good news.

All the best,
Katie

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 been on Pegasys for over 3 years now and I, too, have had some success although not as spectacular as yours at this stage. It took a while to bring my platelets down from the 800s and I was on 120mcg per week for some time before platelets came down into normal range. I have been on a lower dose of 90mcg for the last month or so and I have just received my first results at this level – platelets 354 which is the lowest result I’ve had since starting Pegasys, so I’m really encouraged by that. I’ve had the occasional bcc removed in the last year or so but far fewer than when I was on Hydrea.

Hope you continue to do well on your Pegasys maintenance dose, Mark.
Cheers
Allan

Hi Allen

Re skin issues - I’ve not had any change at all re skin cancers and any that I might’ve had I put down to being 65 and growing up in Perth WA in the early to mid 60’s where there was definitely no awareness of Slip, Slop, Slap.

Well done on your platelets and that Peg is going well for you. That’s a great result. I’ve got my appointment with my haematologist at CCH (central coast haematology) tomorrow arvo and look forward to talking to her re my allele burden result.

Cheers

Mark

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