Trevor’s Multiple Myeloma journey
Trevor worked as a Master Builder from the age of 15 until he was 74…and that was 2012. He then set about creating Industrial desks as a hobby..brought his home up to speed with some judicious painting and re-organising. He built a gazebo in the garden with a thatched roof to house a hot tub. The garden over the next few years was re-shaped, pruned and weeded.
Life was good. Standing 6’4”, and still with mighty strength, every job was approached as a challenge and with pride. Around 2015 he started to feel the cold very badly, started to experience minor ailments, one after another. He was still fulfilling all that he wanted and needed to do, but something was very much amiss. It was suggested in early 2016, that as his parents had both had thyroid problems, that maybe he too was suffering the same thing.
He was persuaded to visit the Doctor to ask for some blood tests. Within days he was asked to return to the surgery, as it was thought he was suffering kidney failure. More tests followed, and then he was told a referral would be made to the local hospital because it was concluded he was suffering Multiple Myeloma. It was said that he was at Stage 2, and he could perhaps have a life expectancy of two to four years. Treatment started almost immediately in the March of 2016 with Velcade and chemotherapy drugs.
Monitoring Cancer Medication
Charts were drawn up to keep a check on medication. Some of the drugs were for the varying side effects of Velcade. He had to drink in excess of 8 pints of water a day. The tiredness was a nuisance, but inevitable as he was up and down all night getting rid of the 8 pints, so he found himself in need of a recuperative sleep in the afternoons.
His hair thinned, but he didn’t lose it all. He had monthly check-ups, and bone strengthening infusions. In the meanwhile he suffered a stumble and turned his ankle. He had it Xrayed 3 times, but no break was found..however the foot was now misshapen, and it was decided he had drop-foot, necessitating the wearing of a strap that holds the foot up.
At times he was very despondent, but because he could still play his baritone sax in the swing band, his oxygen levels stayed good, so he had goals he made for himself each week. He supported his wife through her heart valve operation in June, and somehow managed to get her through the worst of the aftermath whilst she was healing.
The Velcade appeared to be doing it’s job. Each month the statistics of Kappa Light Chains and Creatinine levels were going down, but it wasn’t until January 2017 that the hospital finally told him he was in remission, and the chemo stopped. For four months, the euphoria of being in remission lasted, although there were monthly blood tests and bone strengthening infusions. Bit by bit though, the critical levels started to rise, and in May, the whole rollercoaster of Thalidomide and chemotherapy drugs started.
From the onset, there was a regime of nightly injections to prevent blood clotting, and the Thalidomide was at a low dose , but as the dosage increased, so did the debilitating side effects. Some days it was loss of balance, itching eyes, and then the pins and needles in the legs. By now Trevor was using a stick when he went out, for fear of falling. He suffered from constant constipation, and had slowed considerably. Having increased the dose once, the Oncologist wanted to raise it again, but the side effects, such as nausea, and extreme weakness, were too much, and Trevor decided he couldn’t take any more.
The treatment dragged on to just before Christmas 2017. Again, there was a sense of reprieve, and a sense that just maybe, remission would last a whole lot longer than the 4 months he had before. However, the aftermath of the toxicity of Thalidomide is pretty unbearable. It is as if every last vestige of strength has been stripped. Every task takes supreme effort ..and still the regime of blood tests and bone strengthening infusions goes on, and the fear of the results of the blood tests is real. The body doesn’t seem to heal. The pins and needles in the legs, and the coldness are ever present. It is time to re-evaluate the options. Is there anything that can alleviate the misery, and anything that can give a glimmer of hope?
Discovery of the video below & CBD Oil
One evening Trevor stumbled across this video after hearing about CBD oil. At last there may be some hope, we have to thank Tim Barrier for his inspirational video to give if nothing else possibly the most dangerous thing in the world to a person suffering from this crippling condition……. hope. But that is all we can do is hope.
Lets see what this does and if it can help. We will be frequently updating this page with updates on Trevor’s progress.
Trevor February 2016 – before Myeloma
Trevor 01/03/2018 – pre-CBD
2 years after diagnosis & treatment.
- 01/03/2016 – Diagnosed with stage 2 multiple myeloma
- 30/03/2016 – Starting taking Velcade
- 11/01/2017 – Finsihed taking Velcade
- 10/05/2017 – Started with Thalidomide
- 20/12/2017 – Finished taking Thalidomide
- 04/04/2018 – Starting with 2 drops 4 times a day with 10% CBD Oil from Amma Life
- 06/04/2018 – +2 days… Feeling some relief and able to get up a little easier (Trevor is surprised). Is this just a good day or is it CBD kicking in??? Lets see.
- 07/04/2018 – +3 days… Just checked in with him and he says he feeling great today, typical old man aches and pains but great! WTF?
- 09/04/2018 – +5 days… Results back for cancer stats pre-CBD, not good. Stats all high again and St Richards hospital now suggesting chemo next month. The big day to find out if CBD will work is 7th May. Keeping fingers and everything crossed. Trevor is feeling well today and trying to remain positive about next months results.
- 13/04/2018 – +9 days… Trevor cut the grass today which was something he struggled with before. He used an electric mower which he had to push as it is the first cut of the year and because it is too wet for his petrol mower. He said he felt tired after, but what do you expect for a 79 year old man?
- 16/04/2018 – +12 days… Trevor is feeling good today and it is his birthday. A few aches but generally feeling good.
- 19/04/2018 – +15 days… Trevor sat on his stool gardening and weeding for 4 hours today. This absolutely could not happen before CBD oil, just marvellous!
- 26/04/2018 – +22 days… Trevor is feeling very good, walking fine, getting up fine and overall very positive.
- 30/04/2018 – +26 days… Trevor is feeling very good compared to when he started, but has said you have to consider he is 80 years old.
- 02/05/2018 – +28 days… Blood test for cancer stats – Done, lets hope!
- 05/05/2018 – +31 days… Feeling good in the garden, doing some gardening and have been shopping today in Tesco unaided again.
- 09/05/2018 – +35 days… The results of Trevor’s cancer stats were very positive showing drastic drops with his creatine levels and the myeloma light chains have stopped their rapid advance. Trevor is very buoyant and hopeful about the future and is going to buy this CBD oil for the rest of his life. We are going to update this page with images of him now, how he can now get up and how CBD has improved his life. Stay tuned…
- 18/06/2018 – +73 days… Trevor is not feeling ill at all anymore. His latest cancer stats are all down. Light chains are down slightly, creatine levels are normal and since not taking any treatment for his myeloma at the moment, these decreases can only be down to CBD. We asked Trevor on 17/06/2018 if he was now a believer in what CBD oil can do… I don’t think we need to tell you what his answer was, but we shall repeat his words verbatim… “absolutely”.
- 17/07/2018 – +102 days… Trevor is still in remission and cancer stats are not going down nor up very much. He is still taking 4 drops 4 times a day and is feeling great… or “not ill at all” according to him. Thanks, Ammalife!!!!
- 04/09/2018 – +153 days… And now for the really good news !!. After 5 months of taking Cannabidoil 10%, Trevor’s cancer marker, the Kappa Light chains, from holding their own at 901.5, have gone down to 894.3…hugely significant, and proving to us that the oil is working. He still, of course, feels his eighty years in aches and pains, but as the staff in the Oncology Dept say, Trevor’s positive attitude helps enormously towards his well-being overall. Going back to the stats listing for this month’s blood tests shows the Creatinine has gone down, as have others, whilst the majority are well within range and even low. The Clinic, and in particular the Senior Doctor, are so pleased with the results, they have given Trevor 2 more months of remission. They know that he takes Cannabidiol, but it is only referred to in passing, as of course the NHS does not have it on their radar yet…or do they?
- 10/09/2018 – +159 days… Trevor continuing to take x4 drops of the Amma Life 10%, 4 times a day but now adding x1 drop 4 times a day of the Amma Life 25%.
- 17/09/2018 – +166 days… Trevor in the below picture after 6 months of CBD oil. I know the quality of the picture is better. but he was very ill in the one from March above. And like he says now, “he does not feel ill now”. No paracetamol now for 7 days, could this be adding the 25%?
- 05/11/2018 – +186 days… Trevor’s results for his multiple myeloma this month we spectacularly good, his light chains were down 46. This is possibly due to him taking 4x drops of the 10% CBD oil 4x a day + 1 drop of the 25% cbd oil 4x a day. He is over the moon with the results and looking at upping the dosage of the 25%. All other stats are slightly down and chemotherapy is off the table again at least for another 2 months…. wooooooo hooooo!!!!