Post by MPN-MATE Admin » Sun Feb 09, 2020 12:45 am
Morning all...
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
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.
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
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 🙏🏻
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.
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.
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)...
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...
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
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.
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
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....😢
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?
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?!?
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