Regrets? I've had a few...

[upham28]

After reading a few thoughts on a few ppl taking HU, not wearing gloves, sharing towels, I want you to reconsider! HU is carcinogenic--please follow all instructions carefully. I have been using Bayer Brush Killer on my property, for about 5 years. I use gloves, eye protection, wear boots, long pants and sleeves. I haven't been able to properly use the spray they provide so I mix it myself and put it in screw top containers. Then I haul it over the property in my Subaru. Rather than spraying it I have carefully splashed it on the miserable vines that grow. After this I wash the clothing, take a bath and relax. The product works perfectly. It saves me the expense of hiring a guy with a brush mower. I have read all about the harmful effects and the ongoing lawsuits. One standout--if a person uses this product for even 2 days a year they can develop blood cancer--cancer of the bone marrow. I have used this for 2 days a year for 5 years. I have PV, watched the platelets rise over a 5 year time frame. I may have done this to myself. In contrast, my sister, ten years older at 87 is just fine. Never goes outside, never exercises--never uses a product like Bayer. Wish I had hired that guy with the brush cutter. I am 77, probably have done many carcinogenic things to myself. I am not interested in suing Roundup or Bayer. I used this product because I thought they removed the most harmful chemical--they didn't. I was careful, didn't drink it, splash it on myself--didn't use it in the wind...but something went wrong. Whatever the brush cutter charges is fine with me. I will never use this product again. Please, please be careful with products like this. I have decided to forgive myself and move on...As Hunter says it is now out of my control.

[Wyebird]

Working with chemicals is something we must all be aware of. I’m sure we could all look back on life and realise that we might have been subjected to chemicals or radiation. We will never know. In my case I Had to help clean up a chlorine leak whilst working in a swimming pool.

No protective gear given. We weren’t aware of the dangers. One of my then colleagues developed a spinal tumour and became disabled. He was in that room for ages.

I unknowingly taught in a classroom with asbestos hidden in the walls. I stuck pins in those walls and displayed work.I also told myself I’d never live near an electrical substation. It was only when we moved districts and into our new build did I realise I was living across the road from one.

Like you I have often given a lot of thought to what I’ve been in contact with.

Answers will eventually surface.

Take care

[Andrew8]

I'm not surprised. I have MF caused by Benzene exposure, which is contained in petroleum products. The scary thing is that Benzene compounds are used in food and cosmetics. Just look for the letters Benz, and avoid if possible. The manufacturers of products say they only use them within safe limits. How can you have a safe limit for something which is a poison ? The same applies to pesticides.

[Loubprv Volunteer]

I’m so sorry this has happened to you. Thankyou for highlighting it.

Unfortunately we are also eating drinking and breathing in chemicals constantly and inadvertently. I ve never known so many people here before with Parkinson’s . Here in the uk we feed our chickens on soya produce treated with chemicals in South America not licensed in the uk. I buy only organic produce ……I suspect the food in the US gets the same treatment.

We have a great organisation here called the soil association. They have a super website.

Wishing you all the best. Louise

[SarahPV in reply to Loubprv]

I’m sorry this has happened to you. uoham. As people have said we can’t escape chemicals these days. Gosh is that true about chicken feed? Would you recommend a reliable re source that I can read up about this please? I have been thinking I should only buy organic eggs. My husband eats a lot of eggs and has had a run of bad health. Thank you x

[Loubprv Volunteer in reply to SarahPV]

Hi SarahIf you buy anything organic it should be dairy produce particularly milk eggs and chicken but Sainsburys are a good choice of organic veg.

Google the ten dirtiest fruits and ten dirtiest vegetables. ( meaning the most chemically treated) everyone thinks organic is hugely more expensive but it isn’t really apart from chicken which is ridiculous but as we only need 1-2 Oz of protein a day I can make a chicken go a long way!

I d rather pay more and know I m not hitting my body with chemicals.

Google the soil association. Don’t ever reheat stuff in cling film or plastic. Try your husband on an anti inflammatory diet or way of eating. I bet he ll feel better. Loads of anti inflammatory recipe books on Amazon. Xx

[ritaandscooter1]

When I first traveled cross country to see an MPN specialist, the first question he asked me was what chemicals I could of been exposed to. Nothing immediately came to light. When I went back to my teaching job In Anchorage Alaska I by coincidence was approached by another teacher who started talking about her husband who grew up in the same area of town as me (same age) and had tumors in his brain. She then went on to tell me of several others who grew up in the same area during the 1960's who had acquired various cancers. During the 1960's they still sprayed DDT by air and by truck to cut down on mosquitoes. My sister and I would play all day in the Alaska wilderness the entire day (every day) and eat various berries. I even remember other kids running after the DDT truck as it sprayed. I was only elementary age and no one at that time knew the horrible consequences of DDT. I'm pretty certain this is how I acquired PV. My older sister has thyroid issues and my younger brother had the rarest form of testicular cancer removed. I had no control over this exposure. Kerry

[hunter5582 in reply to ritaandscooter1]

Geographic cancer clusters are know to occur. Of note, There is a PV cluster located in Pennsylvania that is under study. atsdr.cdc.gov/sites/polycyt...

We know now that the JAK2 mutation is often acquired early in life. It may well be that this is due to toxin exposure in early life or it may be that the toxin is what triggers the disease later in life. The apparent role of the JAK2 46/1 haplotype as a predisposing factor likely plays a role as well.

Hopefully we will learn more in the future both for prevention and treatment.

[ritaandscooter1 in reply to hunter5582]

Thanks Hunter for your on-going wealth of information. Is there a way to get tested for this JAK2 46/1 haplotype? Kerry

[hunter5582 in reply to ritaandscooter1]

Best thing is to check with your MPn Care Team for what is readily available. If you are already diagnosed with a MPN then it is not likely to be considered "medically necessary."

My daughter and I both did the 23&me profile where the predisposition was noted. . Note that this is not considered a "medical grade" genetic test. Given that we are both JAK2v617f positive, it is not surprise that we tested positive for the JAK2 haplotype. Note that we are also both NF1 positive.

For most of us this is an issue of mostly academic curiosity since it does not change anything once diagnosed with a MPN. I do find it fascinating and relevant in my family. My son is positive for erythrocytosis but is JAK2 negative. most curious indeed.

[Otterfield]

I like the title of your post!I don't know if I have been exposed to any potentially toxic chemicals in my life, apart from occasional use of darkroom chemicals. I'm not aware of a wave of cancers among photographers of the darkroom age though.

I suppose we just can't know and must deal with the situation we find ourselves in.

We are, of course, made of chemicals - everything is. Ideally we would avoid any substance which might harm us but I'm not sure that we can.