NEW DRUGS FOR MPNS...: Post by MPN-MATE Admin... - MPN Voice

MPN Voice

10,886 members15,201 posts

NEW DRUGS FOR MPNS...

socrates_8 profile image
35 Replies

Post by MPN-MATE Admin » Sun Feb 09, 2020 12:45 am

Morning all... :D

Here in Sydney after our hellish bush fire season... we are now in Flood! Unbelievable... but in many ways most welcome...

New beginnings in 2020 might be the order of the day...

Just recently came across a News article that the USA FOOD & DRUG ADMINISTRATION (FDA), has a 'Fast-Track' approval system that has been allowed for a new Drug to treat ET, PV & MF...

This might be interesting... Could well be a 'Game-Changer' ???

Best wishes

Steve

Imago Receives Fast Track Designation from U.S. FDA for Bomedemstat for Treatment of Essential Thrombocythemia

JAN.13, 2020

mpn-mate.com/forum/viewtopi...

Written by
socrates_8 profile image
socrates_8
To view profiles and participate in discussions please or .
35 Replies
Clarke7 profile image
Clarke7

Thanks Steve for being on top of things! Sounds promising still just taking baby aspirin and turmeric along with Vigorous swimming 5x a week and prayer. Numbers are stable. It will be interesting to get more info on this new drug as to its benefits side effects etc.

Blessings;

Clarke

bigberta17 profile image
bigberta17 in reply toClarke7

Hi Clarke: I just saw your post regarding that you are taking only baby aspirin and turmeric along with exercise and prayer--that has been my regimen since being diagnosed three months ago with ET--platelets are only at 487 but oncologist wants me on meds when they hit 500 and I am trying to find natural ways to keep them lowered. Was wondering what you were diagnosed with, what your platelets are and how much turmeric/aspirin you take and any other supplements or foods you try to include? Thank you so much for anything you can provide. Blessings. Judi

Clarke7 profile image
Clarke7 in reply tobigberta17

Hi Judi;

Great to hear from you!

My platelets have been elevated above normal for at least 8 years, in the high 400’s. Then at age 68 was at the oncologist in May 2019 when I was diagnosed with ET/Jack2. The trend then was 576. He wanted to start Hydrea. Didn’t say I had a blood cancer let alone that Hydrea was a chemo drug. I didn’t follow his advice. Wasn’t a good experience.

I then found an Awesome MPN Specialist and the numbers were next test at 520, then after attending a prayer service at an Orthodox Church the number was 476 prior to Bone Marrow Biopsy. Biopsy showed no scarring or other issues. All the other blood counts were normal.

Then the next two tests in Nov and Dec were 390, 380 the first time in the normal range since I had annual blood tests over the last 8 years prior to diagnosis . The last test Jan was 460, was under some ministry and family stress in January which I have to manage as the oncologist said stress can negatively impact platelet count. My next test is Wednesday. I get tests about every 5 weeks. My oncologist has me on wait and watch.

My main regimen is morning and evening prayer above everything , which is good for mind body soul and spirit 🙏🏻😊

I swim vigorously 44 laps 5 days a week about 35 minutes each workout. I take one baby aspirin a night, 6 oz glass of red wine with dinner daily, Garden of Life extra strength Turmeric with includes black pepper 551mg tablets one in the morning and one at night, in the morning I also take a shot of fresh turmeric with black pepper which helps absorption that I get from a juice bar ( buy 7 a week and store them in the frig. ) I drink pure low sugar cranberry juice in the morning, 2 teaspoons of Organic Tahini ( these are foods along with alcohol that people with low platelets are to avoid as they can lower platelets , so conversely my thought they can help lower platelets of people who have high platelets ) I also take two Nordic Natural Omega 3 fish oil capsules , and 5,000 units of Vit D3 a day. I’m asymtomatic for the most part so I’m very thankful that God is helping me with this Illness.

I pray for all of us on this network as it’s very helpful, I hope to learn from others things they are doing naturally. I’m also interested in new breakthrough drugs that are in the pipeline that may be less dangerous to take for MPN patients. We’re all praying for a cure above everything. Hope the info I provided is helpful to you 🙏🏻

Clarke

bigberta17 profile image
bigberta17 in reply toClarke7

Hi Clarke Thank you so much for all the information. It is giving me great hope as I am 71 and have ET/JAK2 diagnosed about 3 mos ago. I am seeing a new hematologist/oncologist on Feb. 17 for a third opinion and hope and pray she is on the same page as I am in regards to natural methods vs. chemo drugs. I also take turmeric as you do and the aspirin. I am trying to eat healthier cleaner food and increase my exercise from 3x/week to 5x/week. Sounds like you have that down to a science. Also sounds like all this is working and I hope and pray I can stay under 500 by doing natural methods also. I will look into the other things you are doing also and so appreciate all the information. I am finding this site, along with the MPN site very helpful and supportive. I am with you in prayer--it is first and foremost and I am putting it in God's hands to help direct me to do the right thing. Of course we have to stay informed as to the other drugs out there but right now I feel they have far too many detrimental side affects and I'm not willing to suffer those along with the current side affects I have to manage with this disease. I will keep you and all the others in my prayers and hopefully we will all be able to manage this disease and learn new things daily to help us in this journey. Again best of luck to you and as you learn any new things, I hope you will post for all of us to learn, as I plan on doing the same.

bigberta17 profile image
bigberta17 in reply toClarke7

By the way, my name is Judi.

bigberta17 profile image
bigberta17 in reply toClarke7

Hi Clarke It's Judi again. Also forgot to add in addition to prayer, I am taking a mindful class learning to meditate to reduce stress, and starting to drink a little no sugar added pomegranate juice which has been shown to lower platelets, probably like the no sugar added cranberry juice.

socrates_8 profile image
socrates_8

My pleasure Clarke... 8-)

Great to hear things are remaining stable for you...

Yes, I realise you prefer all the natural remedies, however, I do believe that simple science can sometimes help us all find 'Better Alternative Treatments' (BATs)...

This new Drug does sound very promising...

I shall be watching its develop most keenly... :-)

Best wishes

Steve

Cja1956 profile image
Cja1956

Sounds promising! Thanks for sharing.

socrates_8 profile image
socrates_8 in reply toCja1956

Yes it does Cindy... 8-)

Best wishes

Steve

Aneliv9 profile image
Aneliv9

Did you clarify if it is best suitable only for those with Jak2 mutation? I think that this is what I understood

socrates_8 profile image
socrates_8 in reply toAneliv9

Aneliv...

I cannot read these articles for you...

I am sorry if you are unable to understand. Many times when I place these Posts, I always keep in mind that I might need to explain them as best I can, at all times...

The article states the following MPNs are likely to be helped:

"In non-clinical studies, Bomedemstat demonstrated robust in vivo efficacy as a single agent, and in combination with other therapeutics across a range of myeloid malignancy models including the myeloproliferative neoplasms encompassing myelofibrosis, essential thrombocythemia and polycythemia vera"

That is all I can tell you because that is all the article states...

I hope this helps... :-)

Steve

grgracey profile image
grgracey in reply tosocrates_8

Wow nice!

Applesnpears profile image
Applesnpears in reply toAneliv9

Ameliv9

The link below might help you.

empr.com/home/news/drugs-in...

It appears that bomedemstat is not a JAK2 inhibitor so may be suitable for those who are JAK2 negative.

Certainly worth watching out for over the next couple of years.

Aneliv9 profile image
Aneliv9 in reply toApplesnpears

Thank you very much. I have read the article from mouse models and seemed to me that it was more effective to Jak2 and mpl mutated mouses. But i couldn't figure out if this was the final conclusion or the most prominent effect was on the Jak2 mutation. I will read your link right now

Applesnpears profile image
Applesnpears in reply toAneliv9

Hi. I've had a look at the original research paper using the mouse models. It appears that the bomedemstat has an beneficial effect on the with the JAK2 and mpl mutations. I wouldn't read too much into the fact that the effect was greater in the JAK2 mutated mice because the absolute and relative effectiveness of the drug might be different in humans. The important thing is that the drug is targeting a different biochemical process (other than JAK2 signalling) that might be helpful in people who are triple negative.

Of course it would be better to understand the fundamental biochemistry of triple negative ET. With that information it will be possible to develop other drugs that are more specific and effective.

In the meantime the finding of drugs that are more generic in their action is the best that can be done.

Aneliv9 profile image
Aneliv9 in reply toApplesnpears

Thank you, you understood exactly what i mean in the first place. In a manner you asked a part of my question. That this drug is targeting a different biochemical process than jak

Tylerdog1 profile image
Tylerdog1

Thanks for sharing - it’s interesting reading.

socrates_8 profile image
socrates_8 in reply toTylerdog1

Hey Tylerdog1...

Indeed...

We shall all have to keep our ears pinned to the ground, as this is only a Press article but a very good one all the same, in my view... 8-)

Best

Steve

Manouche profile image
Manouche

We now have bomedenstat but many others look also promising: news.cancerconnect.com/api/...

Bluetop profile image
Bluetop in reply toManouche

All interesting -I didn't pick up any mention of these nor bomedemstat from the ASH conference reports. Thanks for posting

socrates_8 profile image
socrates_8 in reply toBluetop

Most welcome of course... 8-)

Best wishes

Steve

grgracey profile image
grgracey in reply tosocrates_8

I was diagnosed having ET +1 with the result of my bmb and the doctor still gave me the same medication with hydroxyurea and aspirin. Hydroxyurea makes my other blood down like RBC, hemoglobin, and hematocrit. Makes me upset..lol...but there is nothing I can do but to accept this thing in my life...I don't like to because Im still single never been married before....and I would like to have my own family but it is very impossible now I have blood cancer. So sad....😢

socrates_8 profile image
socrates_8 in reply togrgracey

Gracey... :-)

I understand your concerns... However, you should still be able to have a family I believe... Most people's MPN blood cancers are considered to be 'Acquired' rather than through what they term: "Familial Disposition"

In other words, just because you have an MPN, it doesn't necessarily follow that your children will have it too... :-)

Therefore, please don't be quite so sad as you possibly just need to hear that from a MPN Specialists (Haematologist) who knows and understands these conditions...

Gracey, I am also quite curious as to why they have already started you on HU.

Usually, when people are much younger, they are ONLY required to take Aspirin or Blood thinners to deal with the sticky Platelets etc...

However, there are some exceptions of course...

For instance, in my own case I have suffered from what is called a 'Transient Ischemic Attack' (TIA – minor brain stroke), which elevates me into a higher Risk category. I was 57 at diagnosis, and my BMB was a Grade2 level of bone marrow scarring, and I also have another High Risk cellular mutation called: ASXL1+ which all simply translates into me being more High Risk (HR) etc...

Were you having any bad symptoms prior to your being diagnosed Gracey?

Have you had a TIA? Just curious is all... :-)

Best wishes

Steve

JT_Marlin profile image
JT_Marlin in reply tosocrates_8

Steve, you seem very zen about your own situation. Not sure how long youve been dealing with this, but how do you get over the hump that Gracey (and myself) are dealing with? How to come to terms with the seemingly randomness of this diagnosis?!?

JT_Marlin profile image
JT_Marlin in reply togrgracey

Thats awful. Hang in - think positive.

Says the guy who was literally recently ET diagnosed having had a TIA and jak2+. I’m trying to cope too.

The only thing that helps me for now is thinking like a stoic:

You cant control this but you can control how you react.

Whether your outlook is bleak or perhaps just uncertain, take one day at a time. Tomorrow is a new day and you’ll be fine.

I keep telling myself all of this - not sure its helping me, but maybe it will help someone else.

Good luck, be strong and be you.

Mazcd profile image
MazcdPartnerMPNVoice in reply togrgracey

Hello grgracey, please read this information on our website about pregnancy and MPNs, hopefully it will help you:

mpnvoice.org.uk/living-with...

best wishes, Maz

socrates_8 profile image
socrates_8 in reply toMazcd

Thanks Maz... 8-)

Glad you chimed in with this one...

Obviously a real concern for Gracey and anyone else contemplating starting a family...

You're an angel Maz...

Steve

ox

Maisie10 profile image
Maisie10

Thanks for sharing Steve. It’s good to read, something to keep our eye on.

Best wishes

Maisie

Wyebird profile image
Wyebird

Than you so much I’ve just read up on it

socrates_8 profile image
socrates_8 in reply toWyebird

Definitely shows some promise... 8-)

Best wishes

Steve

azaelea profile image
azaelea

Thanks Steve. Looks very promising. We all really have to thank you for your never ending research. Regards, Fran

socrates_8 profile image
socrates_8 in reply toazaelea

Hey Fran... 8-)

No problem... Helps keep me positive too... :-)

Best wishes

Steve

grgracey profile image
grgracey

Oh wow! Really? Hopeful for that good news....I hope not so expensive also...affordable and easy to purchase for all of us who has blood illnesses....

socrates_8 profile image
socrates_8 in reply togrgracey

Let's all hope so... Gracey 8-)

Unfortunately, however, we still reside in a world where the governing paradigm is...

Money!

Best wishes & keep smiling anyways... :-)

Steve

grgracey profile image
grgracey in reply tosocrates_8

Yeah so true..

Not what you're looking for?

You may also like...

DO MPNs RUN IN FAMILIES?

Post by MPN-MATE Admin » Thu Mar 26, 2020 9:05 am Guys... Morning to all of you wherever you might...
socrates_8 profile image

INFLAMMATION & MPNS

Post by MPN-MATE Admin » Sat Apr 04, 2020 11:17 am Hey everyone... 8-) Hoping that you are all...
socrates_8 profile image

ASH 2020 | Timing of driver mutations and clonal dynamics in MPNs: a new paradigm for blood cancer development

Post by MPN-MATE Admin » Fri Dec 18, 2020 12:27 am Evening all... This short You Tube is full of...
socrates_8 profile image

FDA Rejects Ropeginterferon alfa-2b for Polycythemia Vera

« The drug development process is not always easy or quick. It consists of drug discovery,...
Manouche profile image

ASH 2020 | Impact of COVID-19 on MPNs patients

Post by MPN-MATE Admin » Fri Jan 01, 2021 9:57 am Morning everyone & welcome to a happier year...
socrates_8 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.