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🌟Anyone familiar with this
Says it’s a revolutionary specialized treatment for chronic infections, cancer, blood disorders, vitality, longevity, etc.
Apparently, many ppl do this worldwide for multiple reasons.
Reports say no known reported side effects and safe for all ages.
🌟I’m quoted it’s about $8,000 total, told the stem cells last for your life and they’re from umbilical cord blood with NO DNA from healthy babies and mothers
Said they’re tested to be safe and thankfully non- Covid… read more
Tatiana, I was only sharing my single person experience. I'll add, I was quite sick when I had Covid.
The trial for immunity measured 52 different 'proteins', antibodies related to sars covib2..And… read more
for the last 2 years I have been working out at the gym 90 minutes for 5 days a week to get fit and now I am. after being diagnosed with PV last month, I have some concerns wheather working out for 5 days a week can be bad for me or not.
I am 42 and feel very energetic and want to be a fitness coach so I am really looking for a science based recommendation about this.
Thank you
Hi Immortalist,
I'm 35F with ET
i found out that there is no real limitation to the activities we are doing, beside the the general advices/indication (ie. no contact sports, no skuba diving, etc).
… read more
I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more
Hi, Genette. I've gained about 13 lbs. However, I will not go off of Jakafi, as it keeps me going one day at a time.
Here's another source to consider. It's a 2017 scholarly article that discusses familial cases of MPNs (genetic predisposition. The authors say this: “In our experience, about 7% to 8% of patients… read more
I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more
I was told by an MPN specialist that they can see everything they need to from a tube of blood. A biopsy confirms what they suspect from labs. Confirming gives them a better idea of what they're… read more
I have well-managed ET with minor symptoms. I have seen others talk about “bone pain” and I’m not sure exactly what that means. Is it the same as joint pain (knee/wrist/etc.)? Or is it something else - such as sharp pains in long bones like the arm (radius) or thigh (femur)? Can someone please describe it in more detail for me & explain how it was diagnosed, and what your doctor suggested for relief ? ~ Thanks!
Thank you, Tta, for such great references and information. It’s very helpful! Lydia ~ thank you for your insight as well. I had a strange pain in my upper left arm/shoulder last year that would… read more
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Solidarity 🌷
Exhaustion is a symptom of MPNs, and so is body pain. While stress might accentuate them, when one has an MPN, it is far more likely they are there due to the MPN. There are some good… read more
Is there any info about IF and 2/3 days fasting (only tea). NL doesn’t have any info about this. I have to start with med, but want to maybe postpone this.. try to create the best bloodwork possible..Is this possible via fasting! I know about the Mediterranean dieet. Pleas can you make me happy with an advise? Thanks
I use beetroot in my juices plus I really enjoy beetroot
Here is what is written in an article I am reading about beetroot-
‘Beets are high in antioxidants. Like carrots, they’re also rich
in… read more
My husband has Jak2 ET. He’s currently sick w/COVID for 2nd time in a month. Took Paxlovid and symptoms got better. Now sick and positive again. Is ET considered an immunocompromised disorder? Seems regular docs don’t know a lot about ET.
Dear Debra,
Some doctors tend to minimise risks and use absolute terms. In absolute terms, someone with ET only and without treatment might not fit the bill of being immunocompromised if by… read more
I would also like to add to this
Advocate for yourself! Educate yourself on your diagnosis so that you can ask the right questions to your doctor
Also tell your doctor everything about how you are… read more
