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@lauraz and @carolesg I find the falls are getting worse and more frequent, and always think it would be nice to have an intervention to prevent the progression of the non-cancerous symptoms associated with this disease, considering that it’s cancer is not the problem, the problem is the remaining issues that arise due to the existence of paraproteins and the resultant effects.
If there was something not chemotherapy related that could impact this part, then that would be amazing. I think it’s not good enough for the medical profession to watch people who are evidently (via test result as well as symptomatology) symptomatic and simply shake their head and brush off their hands saying there’s nothing that can be done - to me that’s like saying to someone we don’t have a treatment for what’s causing you to have this heart problem, so we are just going to ignore it and pretend it doesn’t exist by calling it heart disease of undetermined significance. It may incapacitate you, yes; but that’s not our problem. And if you continue to faint and have significant falls, that’s also not our problem.
It’s kind of barbaric in some ways to be not actively addressing the non-cancerous symptoms when they are altering body function and resulting in harm to the person, with investigation of other forms of treatment and active research into getting rid of this what I believe to be ridiculous nomenclature of wishy-washy-turn-a-blind-eye ‘undetermined significance’, and finding why some people have changes in internal body function because of the non-cancer effects, then naming it accordingly..just like how there’s the accurate name for when MGUS starts causing kidney disease, that is called MGRenalS.
Yes, there is valid reasons not to give cancer specific treatments to someone who is not classified as having overt cancer to the volumes that warrant cancer specific treatment because it’s going to create significant side effects while not killing enough cancer cells, but there is a huge opportunity to study and develop interventions discrete to those sub aspects of the disease that cause changes in the body that aren’t cancer. To continue to perpetuate the mantra that those who are symptomatic but not cancerous should just suck it up and be thankful they don’t have cancer is like saying to someone with a fractured arm suck it up and be thankful it isn’t your back, while sending them home because you’re not going to treat them for the suffering they are currently going through.
That is quite unacceptable and significantly cruel in its arrogance.
Any time a person is having objective changes due to disease processes that then affect their quality of life, there is an onus on the medical profession to acknowledge, investigate and find help for that cohort of people.
Imagine if a car developed a particular problem and all mechanics simply said “oh, that’s engine failure of undetermined significance - it could have critical failure tomorrow, or it may last another 10 years; either way, I’m going to ignore it and you just keep driving and bring it back here for me to check the dip stick each 6 months”. I would spin him and put my boot in his backside!
You can see my point - said rather emphatically and with some humour - however the underlying seriousness of people’s suffering being dismissed, minimised, and thus not adequately addressed needs to change.
Replies to "@lauraz and @carolesg I find the falls are getting worse and more frequent, and always think..."
Well expressed and true. As I watched the slow demise of my beloved with late Stage III, High Risk MM I often wondered why the acronym for it's pre-curser was not MGDS indicating "Determined Significance" as it was CLEARLY Significant.
I am grateful for the research, although limited, that is basically being done on our behalf. As stated in prior comments, I'm involved with Dr. Urvi Shah at Memorial Sloan Kettering with a Whole Food Plant-Based Study. Worth a try. Only time will tell. I go back for my one year and final study visit which is also my first year subsequent to diagnosis of MGDS. So far so good.😎
As mentioned by ChefT | @cheft | 6 days ago, "The big 3 food companies that basically own the American food supply fill our foods with chemicals in the form of additives....Decades ago food manufacturers removed fats (that are healthy) and replaced it with sugar. Sugar is cheap and addictive. Sugar also wreaks havoc on the body causing inflammation and and a ton of other complications....Combine that with striping nutrients through over processed practices our food is no longer nutritious, it’s trash and filled with chemicals....Look at Europe, they just banned many General Mills cereals due to chemicals."
Thank you for all the research you too have done on our behalf as well as your informative and helpful posts. 🙏
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I would like to both hug you and shake your hand. My sentiment, less the booty kicking, exactly.
When I suddenly began having a runny nose that just would not stop running it would start by itself and run so quickly that I didn't even have time to get a tissue out. My doctor told me I was just becoming my grandmother. That's a quote. He did however preface it with a little picture he drew for me in his mind of my grandmother pushing her tissues of her sweater sleeve.
The thing is no one can know what one is going through unless they've gone through it themselves. I am such a conundrum and a myriad of oh Scrabble diseases that no one wants to take me on as a patient. But the insurance companies have made it impossible for doctors too do more than see you clinically and then push you out the door if you do not fit into their paradigm.
I don't know that we have any power to literally change the mechanics of what has become a veritable monster.
I found out a couple years ago that there is some kind of invisible list one through four I believe that determines what an EMT or a doctor should do for you if you were unconscious and alone. One being give full treatment and four being give no treatment.. I just found out I'm number three. Who put me on this list or where the list came from or where you can find the list is beyond me. It was the Cleveland clinic that informed me. I don't know that they will ever piece all of this together, but the more I have to explain it the more I am educating others.. I hope anyway.
A few good doctors are making a little headway and looking for patterns in generational groups with similar issues. I was told one commonality with gastroparesis is dyslexia. Never knew my dad had it until I was in my fifties. Also there are types of dyslexia that describe my vision where no doctor could ever tell me before what was happening to me why letters were splitting in half or bending or twisting. Sometimes we learn things on our own and sometimes we learn from places like this and sometimes we can just come here to commiserate or bring some hope. I'm hoping with all my heart that insurance companies will stop dictating to doctors what they can and cannot do. And that more empathetic doctors will turn up on the horizon. But the more we speak out the more we educate in the more we learn. Thank you for your post