Trigger warning – I apologise if this post is a trigger for you. I do not mean to cause any harm whatsoever. I simply want to add to the education about this condition and what medical cannabis can do for the world.
This condition is a pre-malignant blood cancer called Monoclonal Gammopathy Undetermined Significance with a sub type of IgA Kappa Paraproteinemia. I may or may not end up with multiple myeloma (tumours in the bone marrow). Although, it is possible i will end up with kidney failure first.
I was first diagnosed with this condition 2014 when I was 44 so i have had this for 8 years. The medical professionals don’t really know the causes of this condition, although there is some information that suggests that is it more prevelent in those who have connective tissue disorders, hypermobility/Ehlers Danlos syndrome is one of many. I don’t have any of my test results from 2014 although i seem to remember that the IgA Kappa Paraproteinemia (abnormal protein in the blood) was at 11 grams per litre of blood.
I am now going to reveal my test results from the last year which was pretty scary at times and you may see how cannabis has helped this condition although i still think i am trying to find the right dose as i still have some symptoms of other conditions that are still quite bad.
Haematology Clinic date 29 March 2021
Diagnosis – IgA Kappa Paraproteinemia (14g/L), Free Kappa light cahin 11.9, Free lambda light chain 7.93, Kappa/Lambda ratio 1.5.
Blood Count – White Cell count 10.8, Haemoglobin 113, Platelets 191, and Neutrophils 8.3. Beta-2 microglobulin 1.6, Albumin 39, Calcium 2.78. Free kappa light chain 11.9, Free lambda light chain 7.93, Kappa/Lamda ratio 1.5.
Consultant conclusion – Philippa had a telphone consultation appointment with Bedford Haematology clinic 29 March 2021. From a haematology point of view she is reasonably stable and did not report any issues. She did not tell me that she is taking any calcium supplements but her recent calcium was high at 2.78, therefore to exclude Myeloma i am arranging investigations such as a bone marrow biopsy and a CT skeletal survey. She will have a repeat blood test and a consultation in three to four weeks time.
I feel i should point out that i was still consuming cannabis from the black market and still using tobacco at this point. I had also had my first covid vaccination Astra Zeneca (in my left arm) with quite a few side effects like raised & painful lymph nodes and some eczema patches on my left leg, there were others but i can’t remember what they were now. It was almost like i had long covid from the vaccination which of course sounds absolutely loopy. (disclaimer:- I have always & will always believe that vaccinations for conditions such as covid is best practice and will take any vaccination offered to me even with the side effects).
Haematology Clinic date 26 April 2021
Diagnosis – IgA Kappa Paraproteinemia (14g/L), Free Kappa light cahin 11.9, Free lambda light chain 7.93, Kappa/Lambda ratio 1.5. Bone marrow biopsy done 8 April 2021 showed 5-7% clonal plasma cells consistent with plasma cell dyscrasia. (No aspirate was collected as my bones were too hard to break through so i did not get a full work up). CT skeletal survey 10 April 2021 – no myeloma related lytic lesions reported.
Plan – Expectant management. No further investigation required from haematology point of view. Raised creatinine level of 105 – GP please investigate as appropriate.
Blood Count – WBC (White Blood Count) 11.4, Haemaglobin 101, platelets 191, Neutrophils 8.7. Bilirubin <5, ALT 7, Creatinine 105.
Consultant conclusion – Philippa had an appointment with us on 26 April 2021 however due to the coronavirus outbreak i did a telephone consultation with her. From a haematology point of view she remains well and did not report any issues. Her bone marrow biopsy and CT skeletal survey did not show and significant disease burden and she does not require any further investigation or intervention. Reviewing her blood results i note that her creatinine has suddenly increased to 105. Previously it was well within normal limits.
I was sent for scans on my bladder and kidney’s and although i do get some pain around my right kidney in the mornings and i have issues with specific gravity on a urine test (meaning i’m dehydrated) the scan came back clear. I was still having symtoms from the first corona virus vaccine and had my second on 29 April 2021 so long covid type symptoms continued. In the meantime i started on my legal medical cannabis prescription on the 19 July 2021.
Haematology Clinic date 6 July 2021
Diagnosis – IgA kappa Paraproteinemia – 14g/l (stable). Free kappa light chains 14.7, lambda light chains 8.9, kappa/lambda ratio normal. Bone marrow biopsy 8 April 2021 showed 5-7% clonal plasma cells consistent with plasma cell dycrasia. CT skeletal survey 10 April 2021 showed no myeloma related lytic lesions.
Plan – Expectant management. No further investigation is required from a haematology point of view.
Blood count – White Blood count 11.3, Haemoglobin 102, Platelets 170, Neutrophils 8.3, Beta-2 microglobulin 1.9, adjusted calciumm 2.73, eGFR >90, LFTs normal.
Consultant conclusion – I spoke to Philippa over the telephone today. I summerised her blood results for her and mentioned to her that from a myeloma perspective her blood parameters are pretty stable. She still remains slightly anaemic with a haemoglobin of 102. She has raised adjusted calcium of 2.73. She had a raised calcium in March as well which had normalised in April. I have asked her to increase her fluid intake and if this remmains persistently elevated, then she might need further inverstigations. Her renal function is completely normal. The rest of her blood parameters are stable and therefore we will continue to monitor her closelyand review her back in clinic in three months time with repeat bloods.
Haematology Clinic date 28 September 2021
Diagnosis – IgA kappa paraproteinemia. Last paraprotein from June 2021 – 14g/L (stable). Evidence of immunosuppression. Kappa light chains 14.7, lambda light chains 8.9, kappa/lambda ratio 1.65. CT skeletal survey April 2021 showed no myeloma related lytic lesions. Bone marrow biopsy April 2021 – limited sample – 5-7% clonal plasma cells
Plan – In view of a sudden drop in haemoglobin to 92, patient to have repeat full blood count in the nurse led clinic in one weeks time, Nurse to liase with haematologist if there is any further drop in the haemoglobin.
Target – To keep haemoglobin >80. If the haemoglobin is >100 then review back in our clinic in six weeks time.
Blood count – WBC (White Blood Cells) 8.4 Haemoglobin 92, Haematocrit 27%, MCV (mean corpuscular volume) 100, neutrophils 6.3, feritin 41, folate 8.1, B12 387, eGFR 9. Protein electrophoresis still awaited, Globulin 67
Consultant conclusion – I spoke to Philippa over the telephone today. I summerised her blood results for her. I mentioned to her that her haemoglobin has dropped significantly this time to 92. The haemoglobin has been gradually comming down over the past couple of month howeer it had stabilised at 102 in June. Her Haematinics are completely normal and there is no renal (kidney) impairment. She did mention to me that ovr the past couple of months she has been taking medical cannabis for chronic pain and cancer prevention. She also mentioned to me that she has noticed some lymph nodes under her lower right rib, She had some angry lymph nodes post Covid vaccination as well which have settled now.
Miss Fleming denies any active bleeding and i have suggested that she has her full blood count checked in a weeks time in the nurse led clinic. If the haemoglobin drops below 80 she will go ahead with a blood transfusion and the nurses will liase with the haemotologist for a further course of action. If the haemoglobin is above 100 then we will review back in clinic in six weeks time with repeat bloods.
Haematology Nurse led Clinic date 5 October 2021
Diagnosis – IgA kappa paraproteinemia. Last paraprotein from June 2021 14g/l (stable). Evidence of Immunosupression. (Immunosuppression & Cannabis). (A few months ago i found an article that said if you use cannabis you may not in fact be immunocompromised but i can not find this article at this time).
Plan – To keep haemoglobin above 80 (sudden drop in haemoglobin recently to 92.
Blood Count – White Blood Count 8.4, Haemoglobin 96, Platelets 198, Neutrophils 6.06.
Consultant nurse conclusion – I reviewed Philippa over the telephone today and she remains resonably well however she did explain to me that she is urinating frequently. She has done a dipstick of her urine and this has not shown anything that would indicate an infection. I have told Philippa to increase her fluid intake and test it again in a few days time if it is no better. She tells me she has been testing her urine every day. From a haematology point of view, I understaand that her haemaglobin dropped to 92 and had gradually been coming down for the last couple of months. However, i am pleased to inform her that her haemoglobin is gradually on the rise again and today it was 96. I have made another appointment to check her haemoglobin again in a couple of weeks time which shw was happy with.
Haematology Nurse led Clinic date 20 October 2021
Diagosis – IgA kappa paraproteinemia. Last paraprotein from June 2021 14g/l (stable). Evidence of immunosuppression.
Plan – To keep haemoglobin >8 (sudden drop in haemoglobin recently to 92).
Blood Count – 19 October 2021 – WBC (white blood count) 6.7, Hb (Haemoglobin) 98, Platelets 211, Neutrophols 4.45.
Consultant nurse conclusion – I reviewed Philippa in clinic (Telephone) on the 20 October and she remains well. I have informed her that her haemoglobin has increased slightly to 98 and therefor there is no further intervention required at present. I have no booked her another appointment in my clinic however she has a consultation with the haematologist on 9 November 2021.
Haematology Clinic date 9 November 2021
Diagnosis – IgA kappa paraproteinemia. Last paraprotein from June 2021 14g/l (stable). Evidence of immunosuppression.
Plan – To keep haemoglobin >8- (sudden drop in haemoglobin recently to 92).
Blood Count – White Blood Count 10, Haemoglobin 115, Platelets 225, neutrophils 7, lymphocytes 2, Ferritin 29, Folate 8.4, eGFR >90. Last paraprotein IgA from September 2021 – 11g/L (stable) Normal free light chains.
Consultant conclusion – I spoke to Mis Fleming over the telephone today. She feels well amd did not report any issues. Her blood parameters are very satisfactory and her haemoglobin has increased this time to 115. She mentioned to me that she has stopped her naproxen and has reduced her omeprazole as well. She is on a regular dose of medical cannabis.
Her blood parameters are fine. Her paraprotein has also gone down to 11g/L. We will therefore review her back in clinic in four months time or soonerr should there be a need.
Haematology Clinic date 1 March 2022
Diagnosis – IgA kappa paraproteinemia. Last paraproteinemia from november 2021 was 14g/l (stable) (i dispute this as i’m sure it stated in the last letter that i was at 11g/L) Evidence of Slight Immunosupression. Normal free light chains.
Blood count – White blood count 6.3, Haemoglobin 106, Platlets 195, Neutrophils 3.7, ferritin 39, folate 8.3, eGFR>90.
Consultant conclusion – I tried to contact Philippa over the phone today however was unable to speak to her on either her landline or mobile. I have summerised her blood results above. Her paraprotein remains stable at 14 however there is a slight drop in haemoglobin at 106. As long as it is more than 100 then no active intervention is required and we will review her back in clinic in 3 monthhs time with repeat bloods. If she has any queries regarding this consultation she is more than welcome to contact us.
Further contact through letter 7 March 2022
I now have the results of Miss Fleming’s most recent protein electrophoresis which were not ready in time for her consultation. The IgA kappa is stable at 12g/L. There is evidence of immunosuppression. The kappa light chain is 13.2, lambda light chain 9.15 and kappa/lambda ratio 1.44. Her next review will be as planned.
My own Conclusions – It’s been a pretty scary year without much support. But i’ve had some truly surprising results since I started on the medical cannabis. My paraprotein levels went down from 14 grams per litre of blood to 11 grams per litre of blood in November 2021. At my last blood test which was towards the end of february 2022 that had crept back up to 12 g/L. I think i now require a stronger oil as i do actually find it difficult to take very much by vaping. The most i have managed in a day is about 0.6 grams and my prescription allows me to go up to a gram If required. Monday 14 March 2022 i took my first naproxen tablet since i stopped them on a regular basis sometime in September or October 2021. The pain in my legs has been getting worse since the downgrading of the oil. I have more pain again when walking. I have an appointment at the end of this week to discuss which oil i should be using but i phoned my clinic and found out that the clinic had no idea that i have this condition so i emailed them the letters that i have.
The haemotologist tells me i am at very low risk of getting multiple myeloma at the moment and maybe if i can continue with the medical cannabis prescription that will remain so for many years to come. I feel that my days of activism are not quite over yet. So let’s join together to fight for access to this vital plant that can provide for many industries including carbon sequestration, medicine, food, textiles, fuel and paper to name just a few.
I will continue to update on my progress but in the meantime i will be moving towards the environmental and food production side of hemp/cannabis.
Haemotology Appointment Monday 6 June 2022
Blood test taken on Tuesday 31 May 2022. Letter received Friday 10 June.
Last Paraprotein from March 2022 – IGA Kappa 12g/L (stable). Evidence of immunosuppression. Normal serum free light chains (looks like the last time I was given data on this was March 2021) (now it’s normal)
Blood Count: WBC (white blood cells) 7.2, HB (haemoglobin) 110 (this has gone up since the last test), Platelets 224, Neutrophils 4.3, LFTs normal, eGFR 90. Protein electorphoresis still awaited. (If the numbers have reduced I will possibly get a phone call to update me on the numbers or i will have to wait until my next appointment in three months time). Update 23 June 2022:- Paraprotein levels 13g/L so the levels are going up again. I think i require more THC for the numbers to start reducing again. The only way that i can get more THC is for someone to increase my dose of oil quite substancially.
Maybe this will be the way for me to get cannabis on the NHS. Maybe i will be able to persuade the clinicians to join the medical cannabis clinicians society so that they can prescribe to me. Then maybe i will get a free appointment if i can’t get free product. It would certainly cut down on costs. Obviously if i get a phone call about my protein levels i will update sooner. I was also told at my appointment that my calcium levels were raised again but that doesn’t seem to have made it into the letter.