Not taking

[Mostew]

Re reading my last post it sounds like I started HU .. still havnt as the day before I had decided to take the plunge I felt much clearer and thought I’d wait to talk to the London Integrative Cancer care… STILL feeling ok ….

[hunter5582]

You do have multiple options. hope you get your appointment reset ASAP.

[Mostew in reply to hunter5582]

Thanks Hunter

havnt come across any alternative apart from Anagalide though ?

[Otterfield in reply to Mostew]

I have, at various times, been on Anagrelide, Hydroxycarbamide and Pegasys. Back in 2001 I was on a trial comparing Anagrelide with Hydroxycarbamide. The trial was stopped in 2003 because it was found that Anagrelide was less effective at preventing thrombosis events. I liked Anagrelide because after the first nightmarish couple of weeks, the side effects vanished. Hydroxycarbamide was fine apart from mouth ulcers at slightly higher doses, which were avoidable if I kept away from acidic food. Eventually I was put on a combination of Hydroxycarbamide and Anagrelide and felt very well. I had one year on Pegasys. I felt very fatigued but that might have been because I was starting to progress to MF.

If you choose to take medication, I wouldn't say that any of these are better or worse than the others. My impression from some posts is that some people fear Hydroxycarbamide because it is technically chemotherapy, but if it suits you, that's nothing to fear. We do, after all, have cancer - we probably all struggle to come to terms with that but sadly it's a fact.

I am now on Ruxolitinib for MF - it controls my symptoms brilliantly and I am in awe of whoever invented it, but I wouldn't have chosen it for ET because its immunosuppressive effect is quite extreme, as I'm learning. I am basically going to be social distancing for as long as I'm on it!

As you are still so hesitant perhaps you could have another good chat with your haematologist. And remember you can stop a drug if you find it's not right for you.

[Mostew in reply to Otterfield]

Thank you for your valuable insights.

That’s the impression I get. One isn’t better than another . But maybe one is for an individual.

I struggle with the idea of taking ANY meds. Not just chemo.

Felt a huge step to take the aspirin .(I have never missed a day since taking though !!)

Are you going out ? Do hope you manage too. Social distancing will be with us for a long time

Best wishes to you

[hunter5582 in reply to Mostew]

With HU and PEG-IFN it is a matter of weighing the Pharmacology, risk/benefit profile, and your treatment goals and preferences. We also each react differently to each of the med options. Sometimes we only find out by trying. One of the options is to opt for aspirin only if you prefer that risk/benefit choice. There are people who are age >65 who make that choice and do fine. It is about which risks/benefits you prefer.

NOTE: I recently started PEG-IFN at age 65 not because of my age, but because of the symptoms I was having. HU is not an option since I am HU-intolerant. I will switch to Besremi when it becomes available. I also prefer PEG-IFN due to the possibility of hematologic and molecular remission of the JAK2/PV. The long term prognosis for progression free survival also looks better. This is worth it to me since I also have the NF1 mutation that increases my risk of progression to AML. So - PEG is the right choice for me. It may or may not be the right choice for someone else.

I am confident you will sort out the right choice for yourself. All the best to you.

[Otterfield in reply to Mostew]

Yes I do go out. I am lucky that I live in an area with very low Covid rates. It's also a tourist area though so I will be more cautious when the school holidays start! I really don't want to catch anything though - I've just a campylobacter infection which has taken about a month to clear and I'm not quite right even now.

[ainslie in reply to Otterfield]

Hi OtterfieldWhen you say that Rux immunosuppressive effects are quite extreme I wonder is that your own experience or what you’ve read. I am on it for PV for 3 years and can’t say I’ve had any issues so far. I just had a Covid Antibody test and it shows a very high response to the vaccine. I am quite well read on Rux and it is an immunosuppressive but was curios about your use of the word extreme.

Good to hear it’s working well for you, so far it is going well for me

😀

[Otterfield in reply to ainslie]

Since being on it I have had a bad case of Shingles (I am now on a prophylactic anti-viral). A month ago I had food poisoning, which turned out to be campylobacter. I felt very ill for a week, it seemed to clear but then kept returning. I think it's finally on the the way out but I am still weak, which is pretty debilitating when added to normal MF fatigue. In the past, any such incidents have cleared up within days. Perhaps it's the dose I'm on (20mg), or maybe the fact that I have MF. I have been told to avoid anywhere crowded and I'm happy to comply.Don't get me wrong, I am delighted at the way it has reduced my symptoms but for ET (for me) it would have excessive.

[Mostew in reply to Otterfield]

Because antibiotics kill good bacteria as well as bad it may be worth considering probiotics .

‘Optibac ‘do a good one to take after antibiotics

[Otterfield in reply to Mostew]

Thanks, but they didn't prescribe antibiotics in this case - apparently it has to be even worse before they do. That suits me though as I really dislike taking them.Even so, I have been considering taking probiotics as I feel my gut is pretty messed up so thank you for the suggestion!

[Mostew in reply to Otterfield]

I agree about antibiotics .

Only very occasionally use . I had helicobactor and even herbalist recommended with herbs to help . ….

[ainslie in reply to Otterfield]

Hi OtterfieldI am sorry to hear you have been having several issues. I am sure you know that with MF it can also affect the immune system. If I remember correctly around 6% of people get shingles. The new vaccine Shingrex is allegedly very good, I don’t know if it can be obtained on the NHS, the last time I checked it was only available privately in London and quite expensive, maybe others know more about its availability. A healthy lifestyle and the right foods and supplements also help, I try to do all that and touch wood I have had no problems although I have PV, I am on 17.5mg BID Rux. I am one of the American forums where there are a lot of MF patients on Rux and not that many have immunity issues. Maybe you have been a bit unlucky so far and I hope things pick up for you soon. 😀

[Magentas in reply to Otterfield]

Very helpful, thanks O.

[hunter5582]

The two primary meds for ET are hydroxycarbamide (hydroxyurea) and PEGylated Interferon. Second line meds include Anagrelide and Jakavi (ruxolitinib). Busulfan is another choice (consider it third line). mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

onlinelibrary.wiley.com/doi...

Besremi (ropegylated interferon) is in clinical trials for ET. There are other meds in development as well. It is an option to pursue something on the cutting edge if you have a mind to.

mayo.edu/research/clinical-...

cancer.gov/about-cancer/tre...

One of the better sourced for updates if you have not seen these.

mpninfo.org/conferences/202...

In the alternative treatment options.

metabolichealing.com/essent...

mpn-hub.com/medical-informa...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl....

My own experience with complementary health and MPN tx is that it can really help with constitutional symptom burden, but did not affect platelet levels significantly. Many of these interventions can and do interact with the other meds we take, which is why consultation with an Integrative med doc is so important.

I hope this helps.

[Mostew]

Thanks Hunter

Yes I do agree . Not wise to not use both alternative and conventional

I am finding it hard to accept as I feel better than I have for many years…..

[hunter5582 in reply to Mostew]

Actually I do use both Western meds and complementary interventions including supplements. That is why I consult with an Integrative Med doc. Anything biologically active, including foods, can interact with meds.

[Mostew]

A lesson for me to read what I write before posting .

Of course I know you combine the conventional and complementary…

I missed out

Without consulting a practitioner .

Essential not to make things worse unintentionally.

[Cja1956]

I started seeing a functional medicine doctor about 6 months ago. . She put me on methyl folate about a month ago and I can tell you that it’s really helping with my fatigue. I also take omega 3 and vitamin D. But, I have MF and I still take the chemo pills every day and baby aspirin. No one can tell you what to do. You have to see what works for you.

Good luck on your mpn journey.

[Mostew in reply to Cja1956]

Thank you

I agree We need to get info that is reliable and then decide

Glad you are less tired . Long may it continue

[Cja1956 in reply to Mostew]

Thank you.

[Mostew]

Ps . Probably best to get infection cleared before probiotics . May be a waste of money otherwise?