open to other cancers?

[Carthe]

hi Everyone

Quick question on you do have a MPN are you more at risk of getting other cancers compared to someone who doesn’t have a MPN? Thank you

[LIGEBA]

I don't know the answer to that but I can tell you I have PV and MGUS, but also had Merkel Cell Carcinoma and Basil Cell Carcinoma.

[Mostew]

please try not to worry about the future. Imagining won’t help deal with challenges we have now.

Wear sun hat and cover arms etc . Whatever skin is exposed to sun make sure you use good sunscreen to protect against skin cancer

[bordeauxgirl]

Carth, You have beaten me to that exact question, I have been wondering the same thing for a few years now and not had the oomph to ask.

[Carthe]

I’ll always ask the questions! It’s the answers I’m waiting for! 😆😱

[hunter5582]

The short answer is yes, there is an increased risk of other neoplasms when you have a MPN. Here a few representative studies.

ashpublications.org/blood/a...

ashpublications.org/ashclin...

ascopubs.org/doi/abs/10.120...

The longer and more accurate answer is that that the issue of secondary cancers is complex. There are multiple elements involved. Deregulation of the JAK-STAT pathway is one element. This does more than just make too many blood cells. The creation of a proinflammatory environment is another factor. inflammation increases cancer risk. The presence of non-driver mutations is another factor. These non-driver mutation (e.g. TP53, ASXL1) play a role in other cancers too.

It would require a very complicated assessment of each individual MPN patient to even make a guess at individual risk for any one person. There would also be other factors like lifestyle choices, environmental exposures, and other genetic factors to consider. I have the latter factor. i also have the NF1 mutation. It also increases my risk of additional neoplasms, compounding the risks of having the JAK2 mutation.

I make a conscious choice not to worry about the increased risk. Instead, I do something about it. I never ignore the routine screenings we should all be doing. I have reduced my exposure to environmental toxins, toxins in the foodstream, and eat a healthy diet. I actively seek to reduce systemic inflammation. I exercise and actively manage my stress load. If something does not seem right, I do not ignore it. I recently had a suspicious nevus removed. It was benign, but better safe than sorry.

Bear in mind that even though our risk may be higher, most of us will not develop secondary cancers. We can take proactive steps to reduce our risks. An ounce of prevention is worth 2-pounds of cure when you have a MPN. Best not to worry needlessly. Do something positive instead.

Hope that answers your question.

[Mustang50 in reply to hunter5582]

Awwww hunter you always tell us the the most honest but positive answers such a great help to all of us on here! We just have to get on and live our best lives possible than you!

[Anag]

there are thousands of ways to reduce cancer risk! Stop eating sugar completely is the first. Every human being has 100,000 cancer cells running around their body every day. Usually the body gets rid of them. If you’re eating sugar you’re feeding them same as if you’re eating grains. We eat some rice. Another factor is an acidic environment in the body, which makes cancer thrive. check out the foods that cause that also the drinks.

really good sleep is important and also exercise and plenty of hydration to keep the body fluids moving. Make sure the vitamin D levels are at least 50, best around 70 or 80 or even 100. Drinking nettle tea every other day balances out your pH. We usually do a month of nettle tea, and then two weeks without.

eat as much organic as possible ridding your whole body of us many chemicals and additives as possible, getting rid of body, creams soaps, perfumes, make up, etc. that are not organic Our bodies are burdened already, and they don’t need more chemical burden.

another column to good health is getting rid of all chemicals in the house cleaning agents, detergents air fresheners, etc. Dining all this, my 30 year depression disappeared, as did my fatty liver, my histamine intolerance, 35 yr. eczema, brain fog, 25 kg, and much more. We live in a cancer causing, poisonous world. We need to protect ourselves from it.

we avoid milk because it has growth factor, which helps cancer to develop in adults. Nightshade vegetables are also inflammatory. We still eat potatoes, but we only boil them or bake them. They have cancer causing properties that are activated when we fry them.

I switched to the autoimmune Paleo diet a week after my diagnosis and change my diet immediately 5 1/2 years ago. The change in my health is huge. That 58 I grew up, being told that fat is bad for us, makes us fat and I avoided it like the plague. The opposite is true. We go through one bottle of olive oil weekly. This is where we get our energy. Lots of great fats like coconut oil, grass fed organic butter are never missing from every meal. We eat tons of vegetables and some fruit. Excellent quality meats and fish. We do eat beans and lentils, but we prepare them properly so that the lectins and saponins don’t bother are digestion.

I personally refuse to put sun cream on my body because it blocks the sun’s healing properties. The sun is my best friend and not a foe. This is why people have a tremendous lack of vitamin D in their body. Because I burn easily I go in the sun for 20” the first day 30 the next, then slowly increase until I get a nice tan. Building up the Melanin in the body slowly is the best protection from the sun and the best source of vitamin D!

Olive Oil has about a 20 factor protection and coconut oil 25. If you really want to use the normal sun protection then please take 15 minutes of strong sun first and then use cream in order to get the benefits from the sun. If you have red hair, then of course, you have to be extremely careful! But you also get much more vitamin D, much quicker than anyone else. The darker the skin the more protection, but the longer is needed to get vitamin D in

Knowing all this, and integrating it into my life and my family’s, we are all so much healthier and happier and really don’t think about cancer. My husband had testicular cancer twice years ago. There are so many ways to nip it naturally before it even starts! 🙂 I’ve written a book. Sorry about that.

please have fun living your life just like we do! Educate yourself, which is so empowering. Stop watching the news (also a source of cancer). 😑

enjoy really good delicious food! Nothing out of a package.

Anag 🙂

[Janis12 in reply to Anag]

Hi, I found this response very interesting. I feel it is 'horses for courses', my diet is pretty good, I am very slim/petite and healthy apart form ET, mild osteoarthritis and borderline osteoporosis. I live an outdoor life and am very active. I have been sugar free for 6 months and noticed not an ounce of difference with my aches and pains. If I cut certain food products out as you have described I loose weight which is not great for the bone density. There are so many conflicting views on all of this it is hard to keep track. The other issue is that going organic can be a very expensive business. I have been amongst the farming community most of my life and many farmers agree is is very difficult to maintain a true organic process mainly due to the contaminated environment we live in and the infiltration into our waterways of contaminants from industry and also farming itself. But I suppose any improvement to our diet and products we use in our home should help us in some way. Being proactive does give us hope from the point of view that we are helping ourselves. I enjoy spending my life outside cycling (breathing in all of that pollution!!) and riding horses, walking and after that some time in the gym and swimming pool, I do not want to spend hours researching 'the answer' sitting over a computer, but you mention you have written a book, I would be interested in finding out more about that (Good when someone else has done the work). Keep well and live the dream.

[Exeter21 in reply to Janis12]

yes like you I eat sensibly no sugars but don’t hunt out anything otherwise your mind will Bea stressed mess . Excercise water Mediterranean diet Factor 50 as I sail & no limitations to time limits on oceans . We can read forever about the harm our everyday lives do in environment. But enjoying life is better than worrying .👍

[Carthe in reply to Exeter21]

thanks but I am only 46 and this is a major concern to me when I have two young children and what I thought was a positive happy life ahead of me

[Exeter21 in reply to Carthe]

Carthe do you have good support from MPN doctor. I was very anxious when diagnosed & had a year of rollercoaster treatment . I researched treatments & emailed Professor Harrison at Guys Hospital London .

She is a brilliant MPN expert & since speaking with her & she oversees my local treatment I am much happier . I am now on interferon injection monthly. I have read so much on this subject but I now try carefully to not get stressed about anything as the platelets definitely increase under stress situations . Good luck Julia 👍

[Carthe in reply to Exeter21]

thanks julia ! I have been under chronic stress since 2018 - my last blood test then they were 438 they are now 460… so I did wonder if maybe it was just all stress related? I have high cholesterol am on a statin and ringing in ears and itchy arm periodically- I put the last two symptoms down to perimenopause - I’m 46….

[Otterfield in reply to Carthe]

Anybody can get cancer. I don't know the statistics on how much having an MPN increases the risk but imagine for example that a healthy person's risk of a certain cancer is 1 in 100 over a lifetime. Suppose that having an MPN increases the risk by 50%. That would make the lifetime risk 1.5 in 100. Most increased risks are not high. I understand your concern because I also suffer with health anxiety but I try to keep in mind what my sister's psychologist said to her when she had breast cancer - far more lives are ruined by fear than by cancer.

[Anag in reply to Janis12]

good morning Janis!

Sorry I have really written a book. It meant my post was too long! 😁

Many of my friends have asked me to write one but there are so many out there.

I eat over 2100 calories daily at 58 with little exercise. I’m 70 kg. I used to eat 1200 calories at 30 years old to maintain my 70kg, else I’d reach 85kg in no time. I had A job requiring lots of movement and I exercised regularly.

I believe I mean sooner that I consume a lot of food fats. That’s where my energy comes from. If I had a gall bladder, I’d eat more. Fats are also converted in to a sugar called Ketones in the liver. Much better for our brain, which uses up about 40% of our calories!

if there is a financial restriction, then everything does not have to be organic. For example, vegetables and fruit that are peeled or have a thicker peel, are OK. Leafy vegetables and broccoli for example, are nasty if not organic. Same with coffee!! there’s a lot we can do on low budget. Even if the organic fields are contaminated from another field far away, being sprayed, it still less than being sprayed directly. The worst food of all our greens because they are so gene manipulated that the body doesn’t know them! The gene manipulation done on wheat in 1997 causes insects and birds to eat the seeds for their intestines to explode. Hence we all have a leaky gut. This causes other food molecules that we have eaten with the wheat to enter into our bloodstream and activate our immune system. This causes inflammation, illness, cancer, stiff joints, and pain. For some people, their intestine repairs itself within half hour, and with others, it takes a day or two those who are celiac have it worse than everyone else they’re in your system takes up to 72 days to call myself down after eating gluten which opens holes in our small intestine.

I thankfully live next to the woods, and Austria is very careful about keeping the air as clean as possible. Nevertheless, if I was living in the city, I would have an air purifier in my home, so at least my sleeping hours and home hours give me good air! It is also good to air out the house during the night when there was less pollution and keeping the windows closed during the day when there’s traffic.

another huge element to becoming healthier is drinking cold water!! I cannot stress that enough !! Living in Vienna we have the cleanest water coming out of her tablet any other city in the entire world! It comes right from a spring. This is the biggest blessing we have. When I am out in the country, I use a charcoal filter. 🙂

these are immediate things that can be done to reduce the pollution in our bodies. You are very sporty and that is so important. It’s a huge benefit to your health bravo, bravo, bravo!

in the end, the organic meat that I buy from my farmer cost less than half the price of the organic meat I can buy in the supermarket. I have to make the effort to drive there far away and get it.

One thing that can be done to clean the fruit vegetables as much as possible, is soaking them in a basin of water with a little bit of vinegar and bicarbonate of soda. This is extremely cheap and cleans the vegetables beautifully. I do this also.

Hope to have helped

Anag 🙂

[Janis12 in reply to Anag]

Hi Anag, many thanks for your very informative reply, you must have spent many hours researching 'the food industry' and it would appear it is an absolute mine field. I was disappointed to learn that our vegetable greens are the evil of the vegetable patch due to their genetics, these veg are highly rated when it comes to our nutrition. I note you peel your fruit and veg which I do not as I feel I would be missing out on some nutrients and roughage but I do wash everything in hot water. I never trust any food sold as 'washed and ready to eat', that gets washed by me as well, but I like the sound of vinegar and bicarb for a thorough wash, and cheap too. I had a treat today...bought a small cake and devoured it, well I had been to the gym and an aquafit class and the water was cold so I needed a quick fix, at 64 years old my view is, 'why not'. It is great to read on this site about what people are doing to fight the cause, I find it inspiring, it gives us all hope. I love Austria by the way, have enjoyed many skiing holidays in that beautiful country and always thought how clean and efficient it was, let's hope it stays that way.

[Anag in reply to Janis12]

dear Janis,

so glad to read your message! I peel fruit if it’s not organic, especially apples!

ewg.org/foodnews/dirty-doze...

As an all-around, healthy fruit dessert, I take two or 3 kg of organic apples, cut out the cores, cut them up and boil them slowly in a bit of water for 20-25mins. Then I purée them with a hand blender. It’s instant applesauce, including the pectin and fiber. Amazing for healing the small intestine and feeding our good intestinal bacteria’s, who are our best friends. The taste is great too. No sugar added. Cinnamon can be added.

When eating grapes, I pluck them off their branches and really clean them, not just rinse. Same with leafy veggies that are not organic. It’s important to do the best we can and not kill ourselves with perfection.

I’m also guilty of eating a piece of cake (torte) once in a while. Unfortunately, I pay for it through bloating, brain fog the next two days and fatigue. I don’t tolerate wheat or oats, rye is the worst for me. Spelt is ok and rice is great.

Great that you are so active. Age is a frame of mind! I’m getting younger and younger considering how I was 10 years ago! 😂

If you’re in Austria, let me know. We’re out in Mondsee every summer! The rest of the year in Vienna. 😉

Enjoy spring.

Anag

[Janis12 in reply to Anag]

More great tips! God bless.

[Anag in reply to Janis12]

God bless you too! 🙏

[ainslie in reply to Anag]

this a very good post and I agree with most of it, I am not so sure about not using sun lotion and the sun can be your friend but it can also kill, my mother got melanoma due to too much sun with red hair, it spread to brain and died in a few months, ie it can kill. Ideally keep out direct sun and wear sun block clothes and hat especially if on Hydroxy or maybe Rux. Some sun is probably good for most who are not on Hydroxy or red hair but don’t burn.

I avoid direct sun but keep my Vit D at max with supplements, on holiday I stay under umbrella and wear hat and shirt and factor 50 but still get a light tan because the rays bounce of other surfaces ie walls floors etc.

[Anag in reply to ainslie]

Dear Ainslie,

First of all, I am so sorry for the loss of your mother, especially through such a terrible illness!! one of my friends is suffering from that right now.

You are right about red hair, which I also mention, that and extremely white skin are very dangerous under the sun. I am Greek with dark hair and light eyes, and my skin was white as a ghost when I was young. I used to have pink skin after being in the sun just 30 minutes on the first day. my skin slowly became a little darker with age and I can handle 1,5-2 hours without becoming pink on the first day. Slowly building up Melanine is natural and a good protection and it’s freedom.

there are organic solutions for sun screen that don’t harm our health or the environment, for those who need to use it. In the lake where I fish in Austria, there are two bathing areas. They are now finding titanium dioxide (in most sun lotions) in the seaweed in the whole lake. The university of Innsbruck dept of Limniology in Mondsee (where I fish) is in the middle of a 10 year study regarding this. They are studying all the Austria lakes and some of the German and Swiss lakes too. The fish are eating the weeds and the TD. It stays in their flesh. I believe it is a smaller particles, and even mercury. I was on a scientific boat trip with the director. That means the fish I eat from this lake have TD that was smeared on swimmers’ and sunbathers’ skin from the summers past in them. 😑 mondsee and Attersee are the 2 “cleanest” lakes in all of Europe. All boats except emergency and professional fishing boats run electric.

the shocking scenes i see if Tourist sunbathers in Greece: arriving on the first day in July basking in the sunshine for hours on end until they are lobster red. they repeat their behavior every day. That’s sun abuse

HU does increase the risk of skin cancer. Others here have written this in the forum and have gotten several skin cancers removed. They were not melanoma. when I fish, I stay in the shade or wear a big straw hat, and a longsleeved man’s shirt and long skirt. I try everything to avoid the chemicals and dont mind not looking sexy at all. 😁

Thank you for writing.🙂

Be well. Anag

[Wyebird]

I don’t know the answer but our regular blood tests should help flag up concerns before major issues arise.

[Solyesh]

Great question! I had the same one, especially given a family hisotry of some cancers, for my MPN specialist and he basically gave an answer very similar to Hunter's. Yes, given the over activation of the Jak STAT pathway, potential other non-driver mutations and greater inflammation we are likely at a slightly increased risk. My MPN specialist said the good news is that many of his patients, in an effort to improve symptom burden and/or control their MPNs, start taking actions that actually can proactively reduce the general overall risk. Healthy diets, more exercise, less inflammation, less exposure to potential toxins, manage stress, etc. - potential allele burden reduction etc. all actions which make us healthier overall and improve our chances for longer, healthier lives. We are also usually monitored much more regularly than the overall population so if any issues start to arise we are likely to catch them earlier than most might. So I've decided to try and focus on what I can do to make things better (knowing that after all that it still might not be enough) as my personal stress level always increases if I think I don't have any control over my little corner of the universe

[ciye]

Difficult to answer, I was diagnosed with ET, and 3 months later was informed a bit of what I thought was no more than fluff on xray of lungs, had grown, I opted for reaction of lung. Surgeon came up to inform me that he didn't need to wait for tests it was cancer, thankfully caught really early. I did ask if there was any correlation, they simply don't know.