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b1375911 (@b1375911)

kidney cancer, platelet disorder and Iron Issues

Cancer | Last Active: Mar 7 2:42pm | Replies (7)

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@b1375911, you've got a few things going on. I'm glad that your kidney cancer is in remission. But I see your current concern is focused on determining what blood disorder you may or may not have.

According to Mayo Clinic https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
"Thrombocytosis (throm-boe-sie-TOE-sis) is a disorder in which your body produces too many platelets. It's called reactive thrombocytosis or secondary thrombocytosis when the cause is an underlying condition, such as an infection.

Less commonly, when the high platelet count has no apparent underlying condition as a cause, the disorder is called primary thrombocythemia or essential thrombocythemia. This is a blood and bone marrow disease.

A high platelet level may be detected in a routine blood test known as a complete blood count. It's important to determine whether it's reactive thrombocytosis or essential thrombocythemia to choose the best treatment options."

Has it been determined whether you have reactive thrombocytosis or essential thrombocythemia? Have you had a consultation with a hematologist?

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Replies to "@b1375911, you've got a few things going on. I'm glad that your kidney cancer is in..."

Good morning Colleen,
Thank you very much for your reply.

Well, in 2009, the Doctor reported that I had Thrombocytosis which was suspected that it was due to my smoking at the time. In 2009, they also carried out a JAK2 mutation test which came back normal. That was 14 years ago. Question? In your view, should another JAK2 test be done? The reason I ask, is because when the Haematologist saw me for 1st consultation, he was very quick with me, and made it seem that he will carry out specialist blood tests due to reasons for being referred {raised platelets and suspected myeloma}

They never did carry out the Myeloma blood test, and I can't seem to get any resolve on the matter, due to the fact that Haematology discharge letter reports, " Ms McCollin has been investigated extensively, and have not been able to find a Haematological underlying cause. Then they mention that I was investigated in the past for Thrombocytosis and the JAK2 was negative as well (that last paragraph is based on the letter I gave them dated 2009 = 14 years ago) They go on to say that, "The Thrombocytosis here looks like it could be secondary in nature, and that I am seeing the Rheumatologist whom are investigating me for an underlying inflammatory disease" but they aren't seeing me to investigate what type of disease.
I believe they have deceived me, as there is no explanation as to why they didn't carry out the Myeloma test.

This is the only way I can put this, Haematology have made room for Rheumatology to find a diagnoses, but Rheumatology haven't found one within their specialist area.
In my old letter dated 2009, investigations performed revealed a ferritin of 26ugl, CRP 7mg/l, white blood count 9.3×10, Hb 13.8g/dl, platelets 457×10, monocytes 0.7×10, lymphocytes 2.9×10 blood film was normal, MCV 91fl, ESR 28mm/hr and mentions that my PR bleeding be further investigated.

Today, my blood levels for the above are ferritin 28ugl, Iron 11, CRP 7.3mg/l, WBC 12.3, Hb 13.8g/dl, platelets 442×10, monocytes 0.7×10, lymphocytes 3.1×10, blood film = platelet anisocytosis (what does this mean?) MCV 94.2fl, MCHC 309g/l, ESR 36mm/hr

Overall, I am struggling with a consistent swelling in my thoracic muscle left side that rises up to my shoulder before and after radical nephrectomy. I retained a lot of waste product before surgery and I am still struggling in this area. I have been told that I could have essential thrombocytopenia, or Hemolytic anemia.
My iron levels are low, and dont understand why, and daily I am grappling at iron foods to help me. Today I am very tired and fatigued and feel like I am not getting enough oxygen. Beetroot juice has been high on my list of things to buy to help build Hb.

Can you see my frustration. I am experiencing symptoms, like I need more iron or a blood transfusion. I was haemorrhaging up to surgery and lost blood.
In summary, I could have an infection, where the swelling is in my back, which makes me think that I could have secondary thrombocytosis, but then could be reactive.

Was diagnosed with Lymphoid Hyperplasia of the neck/chest in 2021 which stemmed from a toxic gas leak in May 2020 that blocked my ureter and led ultimately to the removal of my left kidney. I didn't have symptoms associated to Thrombocytosis before surgery, and now I am struggling, and haven't been the same since.
Thank you for reading through my long reply, but I really do know that something physical is happening to me due to symptoms.
Who can I see to determine a diagnoses, as my Doctor is reluctant to refer me again?
Thank you very much
Kind Regards
Annette McCollin

I had an ablation on my kidney to remove the mass and they said that it was cancer, and that they feel like they got it all. 3/2/23