Trevor’s multiple myeloma journey
Discover how Trevor got on with CBD oil vs multiple myeloma cancer. 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-organizing. 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 from 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 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 X-rayed 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.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]
Best selling CBD oil for myeloma
The Velcade appeared to be doing its 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 the 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.
Let’s see what this does and if it can help. We will be frequently updating this page with updates on Trevor’s progress.
A little video about CBD oil for Trevor about CBD oil v Multiple Myeloma.
- 01/03/2016 – Diagnosed with stage 2 multiple myeloma
- 30/03/2016 – Starting taking Velcade
- 11/01/2017 – Finished 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??? Let’s 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, let’s 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 Cannabidiol 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!!!!
- 09/02/2019 – +310 days… Following a blood test from the week before, Trevor was devastated to discover that his kappa light chains, the principal markers for the multiple myeloma had escalated to 1213, and that his new oral chemo regime, a combination of 2 drugs, Ixazomib and Revlamid, would need to be started on the 5th February 2019. It became all very daunting once more. He finished off the last bottles of CBD oil 10 days before his next blood test, as he was told that he couldn’t take it once he started treatment. He went for the results of that blood test, and to pick up the new drugs on 5th February, only to be told that his kappa light chains had dropped to 874, and in fact was the level it was in October 2018, as was his creatinine level. Euphoria followed as you may expect, and he immediately ordered and received the next day more Amma Life 25% and Amma Life 10%. Trevor has started back taking 3 drops of 10% x3 times a day and 1 drop a day of the 25% under the tongue for 3 minutes. Fingers crossed! All of the above was managed on 1 drop 25% CBD 3 times a day and 3 drops 10% CBD 4 times a day. Those doses now increased to 1 drop 25% 4 times a day, and 4 drops of 10% 4 times a day from 6th March. Next results due 30th April.
- 30/04/2019 – +419… Today, Trevor attended the Fernhurst Cancer Clinic to get the results of his latest blood tests. ..heart in mouth as usual. He was told that whilst his cancer markers ( Kappa Light Chains) are elevated, the remainder of his stats are pretty stable. The plan this time is to leave him for 3 months ( end of July) when they will review again. His Oncologist did warn, however, that unless they get the Light Chains reducing, it is likely he will have to go back on chemotherapy by the end of the year. So far though, he is holding his own. He is however in more pain (possible bone lesions), and has slowed down considerably…which may account for what the Oncologist has said, but so far, although the cancer cells are multiplying, they don’t appear to be attacking vital organs…Praise be. He will attend the blood clinic for his next appointment, rather than take a place within the Oncology treatment centre. He is still taking 4 drops of 10% CBD oil, and 1drop of 25% CBD oil 4 times a day.
- 18/07/2019 – At the end of May, Trevor was having trouble with his breathing..following some research his wife suggested he contact the Fernhurst Centre where he had attended for chemo in the past. They saw him immediately and prescribed Steroids..as he was considered anaemic. There followed blood tests, and it was found that the Myeloma was activating again. He was assigned back for treatment. This consists of Ixazomib, which has been trialled extensively and found to be very good at controlling Multiple Myeloma along with the drug Revlamid. He would be on these two drugs, with weekly steroids, and daily injections of the blood thinner, Fragmin indefinitely…maybe not on the full dose, but certainly on a maintenance dosage. Curiously, the Oncologist asked if he was still taking CBD Oil, which Trevor affirmed, and he was told he could continue with it. Previously, he was advised that should he need to start a new treatment, it was most likely he would be forbidden CBD…so we ask ourselves, is the NHS waking up to the efficacy of CBD?
The treatment is miserable, as it makes him very tired, and unable to undertake much in the way of gardening, or household maintenance, which as a builder has always been his forte..but he is determined to give it everything he can to feel better in the long run. … He goes back to the clinic on July 30th to find out what the results are at the end of the first month of the treatment. The story goes on, but having enjoyed 20 months in remission..it’s a tough call.
- 03/10/2019 – He was advised to take Daratumumab, which was an immunotherapy drug, given by infusion. Still having Dexamethasone as a booster. Around this time he was having CBD at 25 mg strength. He had 8 cycles of Daratumumab.
- 30/10/2019 -Trevor was prescribed Ixazomib, which he endured for 3 months. Initially, there was a considerable improvement in his Kappa Light Chains, and then it fell apart. His stats accelerated again. He had glucose problems and was considered for a short period to be developing Diabetes, (as if he needed more problems)..that however became null and void..then his salt levels depleted to the point he may be hospitalised, and yet again, that was nullified when he reduced his daily 8 pints of water daily to 6. We breathed again. Finally, it was decided by the team that he should be put on Immunotherapy, a drug called Daratumumab at the beginning of September. This would be administered weekly until he reached a stable level, then maybe fortnightly by December, and hopefully monthly thereafter. Immunotherapy also gives him the chance of resuming a maintenance dose if the cancer markers elevate again. He has also prescribed a course of Vitamin B12 injections to boost the effects of anaemia. Initially, the injections were twice weekly, but now they will be given 3 monthly. He remains committed to taking 3 drops of 25mg CBD oil 4 times a day. It has been a roller-coaster of anxiety for him and the family over the last 5 months, but he is able to still play his saxophone in the band, and his down days are circumvented by afternoon siestas for a few hours. He is mostly upbeat and grateful for all the chances given. By March next year, he will have exceeded the 2 to 4 years prognosis, given back in 2016, which isn’t short of amazing because by then he will be a month off 82 years old!!
- 07/07/2020 – There was then a decision to start him on Pomalidomide ( Imnovid) at 4 mg. Just 3 weeks in, he was at the point of collapse, unable to breathe properly. He went into the hospital, and it was discovered he had 4 Pulmonary embolisms. Following an 8 day stay to stabilise his condition, the Pomalidomide (Imnovid).
- 07/08/2020 – Trevor was reduced to 3 mg, and he now has to take Warfarin to try and eliminate the blood clots. He has also resumed CBD and the last results for his Kappa light chains were the lowest for over 18 months. His weight has dropped considerably, mostly attributable to muscle wastage, and he is waiting for some radiotherapy for pain relief for the bone pain.
- 12/10/2020 – Trevor paused CBD for around 3 months from May 2020 until August 2020. He has now restarted after becoming despondent with CBD as it did not seem to have the same effect. However, since restarting again his light chains have reduced to 500 again with creatine & kidney functions normal. He has been on 3 drops of Amma Life CBD 3 times a day.