[mark-j-underwoodParticipant]

According to many Consultants who I’ve spoken with, all tend to be saying that with the gamut of medications available now and what is expected to be available shortly, we are rapidly heading towards the point where, for most anyway, SCT will become a treatment of the past for Myeloma.

Yes SCT is uncomfortable, I’ve had two with a nine year gap in between and the SCT took 14 days in hospital on both occasions. The worst part I found was all the prep work to get to the point of SCT. It took me around 6 months to fully recover, but personally I’ve found SCT well worth the daily grind of getting through the procedure.

[mark-j-underwoodParticipant]

As for CBD, I’ve spoken to many Consultants and none have recommended it ever. It’s still being investigated and could prove dangerous for the reasons stated here –
increased heart rate
blood pressure problems
drowsiness
mood changes
memory problems
Cannabis that contains high levels of THC can cause panic attacks, hallucinations and paranoia.

There are also many cannabis based products available online without a prescription. The quality of these products can vary. It is impossible to know what substances they might contain. They could potentially be harmful to your health and may be illegal.

Added to this, at least 140 medications are known to interact with CBD and 57 of those can give serious interactions, sometimes potentially fatal. I know people grasp at straws with serious illness, but please do nothing without talking it over in detail with your Consultant, because you could end up in hospital as a relative of mine did taking CBD for lung cancer.

• This reply was modified 3 years, 1 month ago by  mark-j-underwood.

[mark-j-underwoodParticipant]

Curcumin never affected my paraprotein levels one way or the other after three years of using it. Paraprotein levels are know to rise an fall anyway. Mind you, both my arthritis and gut benefited.

[mark-j-underwoodParticipant]

I must admit, this is the first case of Covid 19 in a Myeloma patient I’ve come across too. I was speaking to Myeloma UK a few weeks ago and at that time they weren’t aware of any patients going down with Covid 19.

Do take care of yourself.

Mark

[mark-j-underwoodParticipant]

Personally I’d steer clear of CBD since it’s mainly a money making machine for Americans. Yes there are some medical conditions it may assist, but in respect of cancer and from what I’ve seen there is no medical evidence nor any in depth conclusive trials to even suggest it may be of benefit. Much of the word of mouth CBD business, and make no mistake it is a money generating business, is based on false claims. A relative of mine was foolish enough to buy, illegally, this substance from the US for his Lung Cancer, the only effect was to make him cough up blood, but other that that it showed no effect whatsoever after making himself sicker than he might have otherwise been.

[mark-j-underwoodParticipant]

Hi, Well there is no such thing as a quick straw poll since you have no access to the 20,000 or so Myeloma patients in the UK since data protection laws would exclude you from obtaining this information.

Next, generally marketing surveys only have a positive information return of just 3% and even targeted surveys have just a little more success. I’m involved with patient surveys at a national level all the time and response is low. Collecting clinical data and analysing it generally is a highly complex task and in the domain of research scientists, not untrained members of the public who lack the training and skills.

You have to accept that this sort of research is cutting edge and is one of the fastest moving areas of cancer research, coupled with some of the brightest minds working in collective teams, much of the research is shared globally. There have been many theories and studies on what causes Myeloma some of which have been settled on, but some are wild and belong in the domain of american style conspiracy theory. Considering Myeloma was noted in people way before blood transfusions were in use, where donors made regular deposits to blood banks your theory is unlikely to say the least. Actually,blood banks didn’t happen until the late 1930’s and the first well documented cases of Myeloma, well, the first well-documented case was reported in 1844 by Samuel Solly. The most commonly recognised case is that of Thomas Alexander McBean, a highly respectable tradesman from London in 1850. No doubt it existed well before then but remained unidentified. Of course there are billions of more people on the planet and we are living to much older age, to an age when genetic faults creep in to the cells, not to mention the ongoing toxic environment most of us live with currently, and certainly since the start of the industrial revolution.

Even if you managed to do a survey and found let’s say 75 % were blood donors, it would actually prove nothing since such information lacks the and cross balance check controls essential in scientific studies. In essence, the result would be meaningless in real terms and of no scientific merit.

With all due respect, I would suggest that you put your theory to Myeloma UK, or talk it over with a Consultant prior to attempting an activity which will cost you dearly in time and prove little if anything.

Best wishes.

[mark-j-underwoodParticipant]

To be honest I’ve never come across this line of thinking, but it falls outside the current suspected causes of Myeloma to my knowledge.

In respect of hazardous chemicals, we are bombarded daily by small dose exposure to toxic chemicals & materials. Most of the household cleaning materials are highly toxic, and plastic is oil based in the main. The manufacture, use and disposal of various plastics can pose numerous health risks, including the risk of cancer. A model example of carcinogenic risk from plastics is provided by polyvinyl chloride, since it is composed of the known human carcinogen vinyl chloride. We spend 30% more time indoors than 40 years ago, yet our man made furnishings and fabrics are well know to produce toxic chemicals. Don’t even get me started on air pollution !

[mark-j-underwoodParticipant]

Try reading this from a Doctor in Portugal… Other similar guidance is available if you do an Internet search.

Genetic Test May Help Identify Ultra High-risk Multiple Myeloma

[mark-j-underwoodParticipant]

My Word, Holt, which I know well, is very remote from anything, Cromer, which I also know is even remoter and as bleak as hell in Winter. Access to Norwich from Holt to Norwich will take about 1 hour by car door to door along an old ‘B class’ road, which is terrible in winter.

The North Norfolk coast has two issues. Firstly the weather and very cold winds off the North Sea make these areas hard to live in over Winter. Secondly, In common with the East Coast of Lincolnshire, people move from the South due to lower cost housing and a rural lifestyle only to have moved into what’s known from a medical view as, ‘A Demographic Time Bomb’. What this means is that lots of non working aged and ill people move to these areas for the reasons mentioned putting a massive strain on all services, especially medical, meaning things like seeing a GP, getting blood tests, seeing a community nurse can be chore. I actually work part-time in the health sector and can assure you that poor access to services is a constant and ongoing topic with both staff and patients in Lincolnshire & North Norfolk alike.

Myeloma is an ongoing and progressive illness, and I should know after 15 years with two Stem Cell Transplants, various issues with broken and degraded bones, disability caused by Myeloma, catching Viral Pneumonia as a result of Myeloma, suffering a stroke while in a coma, due to the ECMO treatment, and six chest infections last year requiring medical intervention. The long-term has to be a consideration with Myeloma in considering a change of house and area.

Personally, If I wanted to move to Norfolk then I’d pick Norwich for a home, because life could become very difficult in these remote rural parts of Norfolk.

[mark-j-underwoodParticipant]

Firstly, I’d seriously think over any move from an urban to rural setting regards healthcare full stop. It’s should be appreciated that services are generally further afield, transport links can be poor and some hospitals aren’t exactly well provisioned to deal with intensive treatment for Myeloma. The Ambulance service in Rural towns even can take an age to reach a patient. Addenbrooke’s of course is great, but if you live in some parts of Norfolk the roads are very poor and it can take forever to get to that hospital. My Sister lived in Suffolk, and it still took an age to get to Addenbrooke’s.

Kings Lynn, in my personal opinion isn’t the best and patients from that area very often choose Peterborough hospital. I have no experience of Norwich, so I suggest you check the CQC pages on inspections and patient views.

Generally, as I have already said, think very very carefully before jumping from an urban to rural area if you have a serious and ongoing health issue. Living in South Lincolnshire, I use Peterborough & Addenbrooke’s, mainly because I’ve personally found Lincolnshire Health Services very poor and the Ambulance service can be a nightmare in terms of response times and have just been placed in Special Measures by the CQC.

• This reply was modified 3 years, 6 months ago by  mark-j-underwood.

[mark-j-underwoodParticipant]

Hi Gary,

In essence, like everything else for Myeloma patients, we are all different and presentation is different for all patients and does vary over the course of time. I’ve had Myeloma since 2006 and can’t recall presentation being the same twice, in fact on one occasion there was nothing untoward. If you have doubts, issues or anything unexplained then talk to either your key worker or consultant.

[mark-j-underwoodParticipant]

Sorry, but I don’t think the idea of physically tagging someone is appropriate. It’s one thing to wear a badge showing support of a group or organisation, another to brand yourself as at risk. Assuming any member public will even understand what the badge means. Taking another stance, we already have a badge of honour in the form of masks & gloves, which Myeloma patients should be wearing, even when the Government has said shielding will cease on 1 August. With infection rates still high, deaths still swinging between 170 to 55 per day whilst not wishing to live in a bunker, the risks for Myeloma patients are real and we need to protect ourselves with masks, gloves and distancing, regardless of so called Government advice, which has turned into a race to reopen the economy at any cost. I’ve taken ‘real’ medical advice from the start and it was always safe in my opinion and that of my Consultants to go out and walk in empty streets and the countryside. Is it safe now ? Less so in my opinion as complacency creeps in, our guard drops and we start to mix with the masses on misguided and premature relaxing of guidelines involving the high risk group. My observations from the car are people behaving like idiots at the moment in local towns, with little evidence of masks in shops, people bumping into each other, and my wife advises me in shops people are handing items items multiple times and not distancing.

Please Myeloma UK, forget badges and establish a framework of ongoing shielding advice for Myeloma patients, not talk about badges or blindly reprint HM Government advice, which we know will put the Shielded Group at risk come 1 August unless there is a miracle and Covid 18 disappears.

My opinion, as stated; Ignore HM Government advice, continue to wear masks & gloves, give yourself 2 metres distance from others, and stay out of shops because the greatest risk is to be found in enclosed spaces. As a patent who contracted viral pneumonia from a 4 hour care home visit, spent three weeks in a coma on ECMO at Papworth Hospital, suffered a stroke resultant of the treatment, the risks remain high in my opinion until a vaccine is developed or Covid 19 dies into obscurity. On the issue of Shielding, Myeloma UK needs to be far firmer with the Government and better with advice to patients because on the 1st August Covid 19 will have neither disappeared, nor will a vaccine be available. From the evidence from Sweden and elsewhere I have seen, anyone with Myeloma is at high risk from respiratory infection, hence many Myeloma patients being prescribed low dose antibiotics.

[mark-j-underwoodParticipant]

It could be either just peripheral neuropathy or fibromyalgia. In fact I have both post 2nd SCT and it’s a life of daily pain and inability to move about a great deal at times.

As well as widespread pain, people with fibromyalgia may also have:

increased sensitivity to pain
extreme tiredness (fatigue)
muscle stiffness
difficulty sleeping
problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
headaches
irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating

Considering the obvious discomfort that you are in, you need to speak to your Consultant or key worker as a matter of urgency to talk about diagnosis and possible treatment. There is no medical test or actual treatment for fibromyalgia, just a chat with a specialist who will ask some questions. Fibromyalgia isn’t uncommon after either a major trauma or medical treatment.

On the treatment side there are things that can help, but sadly having tried most of them they just lessen the pain and stiffness. Also get them to check your scans for signs of arthritis and perhaps a blood test for raumatoid arthritis, which isn’t the same as arthritis, but a closer cousin of Myeloma. At the very least you appear to need input from the hospital, diagnosis and perhaps referral to the pain management clinic.

[mark-j-underwoodParticipant]

My Wife is shielding with me, since she works on Adult Social Care and it was just too risky for her to bring the infection home with her from her place of work. Thankfully, her employer has Furloughed her on 100% pay for as long as it takes, their words, and she will be off work far past the current 12 week Shielding period. I do know of some care organisations insisting already that partners of Shielded people return to work in June. That is rather uncaring and puts people at risk in my opinion, especially considering the death rate keeps hovering around the 300 mark, thousands are still catching it every day, plus the ‘r’ and ‘k’ rates are showing signs of taking off again.

Having had six chest infections last year and a spell on ECMO after contracting viral pneumonia in later 2015, we won’t be taking any risks for the foreseeable future.

[mark-j-underwoodParticipant]

I’m 2 years 8 months post 2nd STC and received my shielding letter very quickly. I’ve got my wife shielded with me at my insistence since she was working, and give the transmission phase can be non symptomatic she could easily catch it and pass it to me without being aware she event had it. Given Myeloma patients are very prone to chest infections and pneumonia, my opinion is that anyone living with Myeloma should be living in a totally shielded household.

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