Hi! I am Chloe

[Chloe2057]

I am as yet still undiagnosed and suffering from the "frailties" of the NHS with regard to being offered fairly quick diagnostic appointments

[Newdawn Administrator]

Hi Chloe,

What issues have led you to seek diagnostic appointments? Sorry to hear there’s a delay and hope you’ll have definitive news very soon. Hope too that it’s not a confirmation of CLL.

Best wishes,

Newdawn

[Chloe2057 in reply to Newdawn]

Thanks for responding! Hey it's great to get a response so quickly. I suffered significant Crop Spray Drift from "Roundup"'Pesticide into my previous home and it sadly killed my beautiful 2 year old dog (cancer) One of the known effects of this disgraceful practice of dumping this highly toxic material on field is cancer. I have several serious symptoms but there is something of a "Government cover-up" because the farmers were told when they themselves complained about its use....YOU WILL grow the ever increasing demands for food! So many people are affected and l have watched them die. I am happy to list my symptoms, others may benefit from my extensive professional research. Regards Chloe

[Newdawn Administrator in reply to Chloe2057]

Yes there have been concerns and issues discussed on this site over the years Chloe. This is from a few years ago;

healthunlocked.com/cllsuppo...

I most certainly hope there is no causation in your case but once you have your diagnostic results, there will be support and understanding on here should you need it. I hope you don’t.

Best wishes,

Newdawn

[Chloe2057 in reply to Newdawn]

Thank you so much for your link. Trying to get diagnostics when you know for 100% that both you and your dog have suffered and are suffering terrible symptoms all correlated to CLL from a medical profession that have been told to "sweep this one under the carpet" is frightening to say the least! Thank you for your support. Today is the first day in 5 years l have not felt alone with this! 😊👍

[Newdawn Administrator in reply to Chloe2057]

I understand what you mean Chloe and the frustration and anger must be overwhelming. How dreadful losing your dog. However, regardless of cause, you should be able to receive swift diagnostic advice in terms of a flow cytometry test. Medics tend not to concern themselves as to how or why we contracted CLL because in most cases it’s incredibly hard to establish.

Let us know if you do indeed need our support because you’ll find tremendous support on this site. I’d just urge caution in making assumptions at this stage because some symptoms mimick blood cancers but they are quite rare, particularly if you are younger.

Regards,

Newdawn

[Chloe2057]

Thank you for that! Sadly l am not young in body 60 but 18 in my mind. After 5 years of meeting most of the criteria for CLL l am going to attempt to get some diagnostics looking purely at this condition. You have been great! What diagnostics should be requested? I understand blood work quite well.

[Newdawn Administrator in reply to Chloe2057]

Here’s a good link explaining all the tests carried out but initially a flow cytometry test is undertaken. I’m not sure if you’ve already had blood tests done but this is the usual diagnostic test carried out by haematologists.

cancer.org/content/dam/CRC/...

Newdawn

[Chloe2057 in reply to Newdawn]

Thank you again. I am going to attempt to discuss diagnostics with my GP tomorrow! Used to live in America for 5 years in SC wish l was there right now, you are way ahead " over the puddle" in diagnostics and Pesticide Poisoning is openly talked about. Frankly here l would prefer to see my Vet who gave me invaluable information. 😊👍

[Newdawn Administrator in reply to Chloe2057]

I’m from the U.K. Chloe.

Newdawn

[Chloe2057 in reply to Newdawn]

Oh wow! You cannot surely be in my area? One Respiratory Consultant who was amazing did her training in Inverness and "kept her family there" while she completed. She described East Anglia as "the Pesticide sewer of England" l do believe that a lot depends on where you live. Post Code theory! I live in Long Melford in Suffolk now but am still surrounded by farmers spraying Roundup! You will laugh at this, but only last week l looked at moving to the Shetland Islands, have lived in the far North before and loved it. Originally trained as a Psychologist, then worked in Probation Service, retired and now am an avid Photographer/artist/musician! I know l have to move again and am prepared to "go off grid" if necessary to escape Pesticides. Roundup has been proven beyond reasonable doubt to cause CLL amongst many other conditions. Happy Days though! Am so pleased to have found this site and meeting you early on was a real lift!

[PlanetaryKim]

Good luck Chloe! Flow Cytometry, I believe, is the test that would yield a conclusive yes/no answer with regard to CLL. However, it is not usually the first test run, perhaps because of cost. Doctors want to make sure that there is some likelihood of CLL before running flow. So Complete Blood Count, lymph node palpation, and patient's description of symptoms usually come first.

best,

kim

[Chloe2057 in reply to PlanetaryKim]

Dear PlanetaryKim, thank you so much for your really encouraging reply! Yes, l will get on to the Doctors first thing tomorrow. I have been requesting a full blood count for a while now, my previous GP was closely monitoring my blood count levels monthly when l first developed signs of Pesticide Poisoning! Trying to be really positive! They always used to joke about me at work and say that l could find humour in just about everything! Thank you again, l have really been bowled over by the kindness on this site! I am going to work on finding my way around it so that l too can offer support and encouragement to others it makes so much difference! Am going to bed with a 😊on my face for first time in ages! Thank you!

[PlanetaryKim in reply to Chloe2057]

Hi Chloe. You sound like a person who is probably already diligently obtaining your own copies of all your test results. But if you aren't, be sure to start doing that. Don't just rely on your doctor saying your blood work is fine, or your Hemoglobin is low or whatever. You want all the numbers in front of you.

My diagnosis was arrived at on the basis of a lymph node biopsy of the sole enlarged lymph node I had near the surface. (I didn't want the whole node removed, so they did a core biopsy of the node instead, leaving lymph node intact and functional.) That result came back as "consistent with SLL", which was then refined to CLL on basis of my cytopenias (anemia and low platelets at that point). So that actually is enough to diagnose CLL. I didn't have flow cytometry until one year later. And that just confirmed the earlier diagnosis of CLL. The reason the lymph node biopsy was done on me was because of my persistent anemia and my classic lymphoma symptoms: fever, night sweats, weakness, fatigue, which would last for weeks but never materialize into a flu or other illness.

Another tool that was relevant in my case was abdominal ultrasound. Mine showed slightly enlarged spleen, liver, and multiple enlarged lymph nodes in abdomen, and near sternum, and near kidneys. Normally doctors want to use CT scan to view this. But I have always refused CT scans to avoid unnecessary exposure to ionizing radiation, which is carcinogenic. And for this purpose of imaging spleen and lymph nodes, abdominal ultrasound is perfectly adequate for what they need to see and measure.

kim

[annmcgowan]

Hi welcome to this site and thank you for the information and discussions on chemicals sprayed in farming. There is no history of CLL in my family but I have lived opposite a farmers field where crops are sprayed regularly for 24 years. It will be interesting to follow this research up. I too was diagnosed with CLL by biopsy during routine breast screening to rule out breast cancer.

Regards

Ann

[annmcgowan]

Ps. My dog died of cancer too and lived here all of her life!!!

Ann

[Chloe2057 in reply to annmcgowan]

Hi Ann l lived in an area where there was intensive use of the Pesticide Roundup on crops. My home filled with Crop Spray Drift , initially she developed a really bad cough and terrible dryness of mouth. Then the lumps which were not large started appearing all over her back. She was a pure black Lhasa and her fur then started to develop orangey/brown look and went brittle. Our vet who was fantastic said straight away Pesticide Poisoning. I developed severe Respiratory problems was hospitalised on many occasions some in ITU. No one apart from one Consultant who was totally honest said that we are treating you with drugs of last resort for Pesticide Poisoning. I developed other awful symptoms all in line with CLL but getting a diagnosis in Suffolk (the sewer of England with Pesticides has become almost impossible. However, l am today going to insist they start running full blood counts etc because l am now bedridden. I am so sorry about your dog, l really feel for you, she was my dear best friend and it broke my heart as l am sure it did yours. Thank you for replying to me.

[annmcgowan]

Thank you Chloe for that information. My vet never mentioned pesticide poisoning and my dog had cancer of the eurethra. I will read all the articles online with regard to this. Thank you for replying. Let us know how things go with you.

Take care of yourself

Ann

[Chloe2057 in reply to annmcgowan]

Hope l have been of some help! If you look up Pesticide Poisoning and CLL you will be amazed. Also America acknowledges openly the link between Roundup and CLL and other related diseases. I found Sarah McKenzie Ross at UCL in London to be a fantastic resource she has been studying the effects on people for over 16 years. Sent me some excellent links. Look also at Glyphosate Poisoning and "Mums Across America" their research was fantastic, professional and relevant. Good luck 😊👍

[annmcgowan]

Thank you so much Chloe I will investigate the links.

Take care

Ann