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chisue

Bone Marrow Test Update

chisue
5 years ago

Yesterday I had to fight to get myself scheduled for a No Sedation test. "Oh, but we always sadate for this."

Oh, but you are not going to sedate ME! It took four calls, but finally I was told not to fast and to come in by 7:30 for the 8 a.m. procedure; I didn't need to fast, and I didn't need to come in by 6:30.

This morning DH and I were putting our our coats when the hospital called. Where WAS I? It was way past 6:30. They rechecked their oops. We were there at 7:15.

All OK, right? No. The radiology nurses insisted I have sedation. I refused. All right, all right, but you MUST have an IV started. Time was marching on. They needed a blood sample anyway, so I caved and allowed the IV.

Off to the CT chamber. Onto my stomach on the table for a nice cold splash of bactine. Swoosh, into the doughnut of the CT and swoosh back out for the doctor to make "X" his entry point.

Two 'yellow-jacket stings' of lidocaine, then the needle went in. Swoosh back into the doughnot. Swoosh out and it's "bam-bam-bam" into the bone one, the same again. (I did the panting thing I see on TV when a baby's being delivered, but it was over MUCH faster than childbirth!)

I asked the doctor how long it takes for the lidocaine to dissipate. He said on hour. (Not the 15 minutes I'd been told on Monday when I had my fall.)

Back to a recovery room with nothing to recover from other than the lidocaine. The useless IV comes out. DH comes in. (I notice that the recovery room door has a 3 X 5 window in it, and I can hear the people at the nurses' station.) After an hour, I'm wheeled out to where DH has pulled up our car. Half an hour later we're eating scrambled eggs and bacon.

Oh, lest I forget, before he left me in recovery, one of the radiology nurses leaned over to tell me that he's been working in this department for six years, and that I am the first person NOT to have sedation. (They obviously tell people they need it. $$$$$?)

Thank you, wantoretire, for bolstering my decision not to accept what was being pushed!

Just now I got a call from Patient Relations. They have my email. They will inform the powers that be about my fall. They will let me know the outcome -- could take a month.


Comments (63)

  • nickel_kg
    5 years ago

    Chisue you're my hero -- this has been so educational. I'm just sorry that it's been at such a high cost to you -- and so glad this time it went better.

  • Fun2BHere
    5 years ago
    last modified: 5 years ago

    I recently hopped on the No Versed train. I hate the way it fogs my brain for days or longer. I don't seem to have a similar response to Propofol or Fentanyl. I always ask for a Scopolamine patch when undergoing general anesthesia to help combat the nausea.

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  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    I'll never understand people going to experts for services or advice and then telling them what to do and what not to do. Most especially in the health care or medical world.

    Having concern about a dangerous or allergic reaction to a medication is one thing. But I can't think of the right words to to fully describe my thoughts when I hear of an untrained amateur telling an expert what to do. Maybe "very dumb and foolish"? Maybe "very inadvisable"? Maybe "sometimes well-intentioned but always misguided"?

  • mamapinky0
    5 years ago

    There have been times I have had to tell doctors NO about certain medications or treatments (invasive and non invasive) about my daughter. Most were not pleased with me. One did some research and called to apologize and told me my refusal to allow him to prescribe a certain common and OTC medication on my daughter very possibly saved her life. I knew what could happen if she took the medication and I told him what I knew about it in regards to my daughter but in the exam room he was not pleased even when I told him my info came directly from a Harvard doctor studying my daughters condition. Sometimes you have to speak up.

  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    Yes, fun2bhere, but I think your attitude is markedly different. Your words say "inform" several times and sharing your experiences and you-specific information for the learned and experienced practitioner to consider is most appropriate and, I'm sure, most appreciated by them to learn.

    You aren't telling your professional what to do, or not do, as others have suggested they do. You and me and any others not trained in the expert's field are ignorant amateurs compared to them, and telling them what to do crosses a line in my view.

    I have faced this myself a number of times in my professional life in a non-medical field. Thankfully not too often. When it happened, I would tell my clients that if they thought they knew more than me and thought it useful to tell me what to do or think, that they didn't need my services and I would be happy to discontinue the relationship immediately. Right then and there. Giving me information and background and brainstorming about it, very useful. Telling me what to do with it, not acceptable.

  • wildchild2x2
    5 years ago

    I ended up with a great relationship with an ENT who seemed to forget he was dealing with human beings. I finally lost patience with his attitude and informed because I was older and deafened my intelligence and self knowledge was still there. I informed that I intended to be very proactive in my treatment plan and he was never to talk down to me. My speaking up fostered a great partnership with a really great doctor. My own personal physician laughed when I told I lit into the other doctor and said "we do need to reminded to get off our pedestals at times". It formed such an excellent relationship with that doctor that I actually got teary eyed our new insurance would no longer cover my visits with him and I had to change doctors.

    When my DS was born he came unexpectedly a week sooner while my own doctor was on vacation. The first thing the doctor on call wanted to do was to hook me up to a fetal monitor and demanded to know why I didn't have an IV in place. Started in on me and actually tried to say I was endangering the life of my child. I reared up between contractions and told him that if he wasn't planning do his job just get out and I'd do alone. He caught my DS about 10 minutes later. Nurses came up during the rest of day to congratulate for standing up to Dr. Expert Pompous who believed all births must be addressed as medical emergencies. I refused the IV at the onset. Who knows what he might have done against my consent had it been in place.

    If we listened to the experts women would still be having knock them out on amnesiacs and drag 'em out with forceps births.

    My dentist asks me if I think I'll need to be numbed for a procedure. He realizes I know my own reactions. I can't tolerate epinephine well so he respects it and leaves it out of the local anesthetic. If i I hadn't spoken up and "told" him what to do with me I would be suffering needlessly in silence.

    This idea that experts are never wrong cracks me up. Ask any lowly machinist how often he has to fix the expert engineer's design and the time spent having to explain why the design/blueprint cannot work. That parts don't get made out of fairy dust.

    Chisue wasn't endangering herself by her refusal. She was protecting herself. Maybe she made a difference in that facility. Just because that 's way it is done doesn't make it one size fits all.

  • Alisande
    5 years ago
    last modified: 5 years ago

    If we listened to the experts women would still be having knock them out on amnesiacs and drag 'em out with forceps births.

    So true. And so sad.

  • chisue
    Original Author
    5 years ago

    Would I have protested the anesthesia on a Friday if I had not had my oncologist MD consider it unnecessary on the previous Monday? That procedure didn't fail because I couldn't tolerate it, but because she evidently knicked something, and I bled to much to continue.

    Would I have refused had I not heard from people on the KT that they had not had it prescribed or had refused it, with no untoward consequences? People even commented that their hospital staff had 'talked them out of having (anesthesia).'

    Now, my own personal experience informs me I don't require anesthesia for this -- and possibly not for a colonoscopy, where this 'twilight sleep' is prescribed. I've had gas pains before, and AFAIK the bowel has no pain receptors. (Anyone know more about this?)

    These little 'interventions' are convenient for the doctors, and...they serve the bottom line.

    Elmer, why do YOU think a hospital routinely orders this mild anesthesia -- when everyone reading these threads knows it is Not Necessary for most patients. When I think that my nurse has been doing IV's and anesthesia on every patient having a bone marrow test for SIX YEARS...I have to believe it's 'hospital policy' without sound medical foundation.

  • chisue
    Original Author
    5 years ago
    last modified: 5 years ago

    luckiirish -- I'm sorry for this unwelcome blip on your DH's medical screen. I hope you will find it IS only a blip. We will all be holding good thoughts for him. I just wish he could be seen SOONER!

    BTW, yes, this was the same hospital. However the failed attempt was within the Cancer Center. The successful one was in the Preventive Radiology section. Also, yes, it is routine to start an IV in an ambulance or in Emergency, but those are presumed to be *emergencies*. This event was not major *surgery* either. We don't require IV's every time we receive a vaccine or are going to hear something that *could* make us ill. (No TV station runs a medical alert before it broadcasts horrific news. haha)

  • mamapinky0
    5 years ago

    But things can happen. Allergic reactions, accidents, bleeding issues just to name a few. If there was no iv in place and there were only seconds to spare to save someone during an invasive procedure...who would say...if only an iv was in place.

  • Chi
    5 years ago
    last modified: 5 years ago

    I agree on the IV in some circumstances. Having an IV already in place can sometimes mean the difference between life and death. In childbirth, for example, everything can be going fine and then a sudden hemorrhage or other problem might happen. There's a big advantage in that case to having the IV ready for medications to help stop the bleeding or prepare for emergency surgery.

    I have difficult veins and I will certainly have an IV when I have a child even though I plan to avoid unnecessary medications. The last thing I want is them trying to find a vein in an emergency. And it does happen. Childbirth used to kill many women, and it still does in some areas.

  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    "Elmer, why do YOU think a hospital routinely orders this mild anesthesia -- when everyone reading these threads knows it is Not Necessary for most patients. "

    I'm not in the field and so of course I can't say with certainty (unlike many of you who think you can), but here's a guess: How are they to know for which patients it's not necessary? How are they to know which patients have a low pain threshold or might panic in the middle of the procedure because of it? If the patient starts to react from what's being done, whether physically or emotionally, it's too late. You used the word "mild" - better to play it safe as take a chance. That's my speculation.

    Same with dentists - why do they use anesthetics and give patients a limited prescription for a pain med after doing a procedure? Same idea, it's often not needed but given in case it is.

  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    "If we listened to the experts women would still be having knock them out on amnesiacs and drag 'em out with forceps births.

    So true. And so sad."

    You two are fooling yourselves. Would you suggest that docs no longer treat illnesses with leeches because patients complained about it? Of course not, that's similar hogwash of the same kind.

    You both know that medical care evolves from research and experiences in practice. New approaches are tried, some stick, some get discontinued. At the heart of the changes are knowledgeable and caring people trying to advance knowledge and improve care, and practitioners usually eager to do things a better way. That's where improvements come from, not from mostly uninformed patients who think they know more than the experts.

    Dr Lamaze, in case the childbirth thing remains of interest to you, was a male obstetrician looking to improve the patient experience of childbirth. He told his patients what to do, not the other way around.

  • User
    5 years ago
    last modified: 5 years ago

    Thanks Chisue. You’re right. My DH certainly didn’t have an iv when his biopsies were done. After our experience with Dr. Fata, as you might recall, he was purposely telling patients they had cancer and treating them for it when they didn’t, we decided to go to Karmano’s which is a larger cancer center in Detroit. The specialty of the Oncologist we saw was MM and he was great, but the hospital we charged us for every single little thing, seriously, I’m surprised there wasn’t a bill for the air we were breathing. The cost between going there vs a stand alone clinic for virtually the exact same treatments was astronomically different. So I have to agree that hosptials will push the envelope when it comes to what they say is necessary vs. what really is necessary.

    Once you get your final diagnosis and treatment plan in order, you may want to check around for a stand alone clinic for the treatments and follow up care. For us, it was not only a more comfortable place to be, but the billing and cost was much easier to deal with as well.

  • Alisande
    5 years ago

    You two are fooling yourselves.

    With that statement alone, Elmer, you've outdone yourself in rudeness and ignorance. You have no idea what Watchmelol and I know about childbirth. In my case the answer is plenty. And based on Watchmelol's posts over the past years, I'm guessing she'd give a similar answer. I'm not going to rise to your bait and write at length about my history. But here's the condensed version:

    Been there, done that (three times). Witnessed that. Photographed that. Researched that (at length). Gave talks on that. Educated a lot of women (and men) on that. Fought publicly with a local hospital on that. Outed a doctor for his dangerous (and terribly sad) birth practices. And so on. Childbirth remains an abiding interest of mine. When I gave birth to my third child in the birthing room of my doctor's office suite, he said, "I've waited a long time for this generation of women."

    Elmer, you are often so strongly opinionated on this forum, so determined to put many of us down and prove us wrong. But the dichotomy is that you apparently lose all assertiveness in the presence of a physician. And that's sad too.

  • Elmer J Fudd
    5 years ago

    If you think you know more than your physician does, no matter what kind of doc and no matter what the reason for seeing them, then you need a new physician. I have as much experience (classes, standing just outside the sterile field and filming) though not physically giving birth with each of my kids. Do I know much? Almost nothing. I wouldn't pretend to know enough to give anyone else other than anecdotal advice.


    AND, I would never be so arrogant as to consider that I know even 5 percent of what a well trained, experienced physician knows who has studied and practiced for years. You've said you live in a small town, is that maybe part of the reason for the seemingly regrettable incidents you describe? Docs and hospitals in less populated areas are consistently lower in quality than those where there are more hospitals and more people.



    Your comment akin to "I stayed at a Holiday Inn Express last night so I know" doesn't hold water with me. You have experience as a patient in childbirth - that won't qualify you for a medical license or even to work as a midwife (who, as long as we're talking, I consider to be more dangerous than useful). Don't give yourself more credit for or pretend you have more knowledge than you do.


    Sorry. You're welcome to your thoughts, whatever they are, but spreading them to others potentially does more harm than good. Fortunately this mostly geriatric crowd is beyond child-bearing years.

  • chisue
    Original Author
    5 years ago
    last modified: 5 years ago

    IF anesthesia was essential for a bone marrow extraction, why would some hospitals require it and others attempt to 'talk the patient out of it'?

    Do you know how fast an IV can be set up? I doubt there is any condition that would kill anyone (presuming the patient *could* be saved) in the seconds it takes to start one. If a vein can't be immediately accessed, a cut-down can be employed. Maybe someone knows differently?

    Too much of 'medicine' is influenced by insurance company and hospital lawyers defending against possible claims...and bean counters.

    lukkiirish -- I will have to see, but I doubt I would go to any stand alone 'cancer clinic' over a highly regarded general hospital that has its own department.

    I find the highly advertised Cancer Treatment Centers of America obscene in their sales pitch. They have been found to cherry-pick patients with the highest chances of cure, then rave about their success rates. They have been forced to add a fine print caution on their ads, saying that *you* should not expect the same rosy outcomes they cite.

  • Alisande
    5 years ago

    Rant on, Elmer, but when you talk about me you don't know what you're talking about.

  • Alisande
    5 years ago

    Chisue (and others) in my experience the "sedation" normally administered in various procedures is Versed, and although it does have somewhat of a sedating effect, it is more importantly a memory eraser. The medical community decided some time ago that if we experience pain but don't remember it, it didn't really happen. Unfortunately, it doesn't work that way.

    Personally, I suspect the extreme popularity of Versed in hospitals has something to do with avoiding lawsuits. A patient who can't remember what happened is less likely to sue over it.

  • Jasdip
    5 years ago

    On an app't with hubby for a thyroid biopsy, I was chatting with one of the other people in the waiting room. His wife had a bone marrow procedure, and she's pretty tough, but this was the most pain she'd ever been in. She was crying. A local is all that's offered.

  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    Sorry if it sounded like a rant. I'm as cool as could be, though perhaps wordy. I'm sorry your experiences have led you so far off the road and into the bushes where visibility is limited and unsupported opinions can't be better calibrated. When one has a bias about what's experienced, one's openness to real information (not offered by me but by qualified docs) and the range of possibilities one will consider become needlessly limited.

  • User
    5 years ago
    last modified: 5 years ago

    Chisue, I think you misunderstood what I meant. The office we go to isn’t one of those fly by night clinics, it’s owned by the hospital we use. (And is highly recommended by other physicians) However, because it’s not inside the hospital itself, their services are billed differently. For example at Karmanos, we got billed for the doctor (of course) but we also got billed for the use of a room we were seen in, for the use of the chair during a blood draw, for the nurse who drew the blood, the triage nurse and his MA. We were billed for literally every single thing and trying to reconcile those bills is a nightmare. However, when someone is treated at the doctors off site clinic, everything from the care to the billing is actually easier to reconcile and everything is much more streamlined; at least it has been for us. But there really isn’t any difference in the quality of care, our oncologist is a part of the hospital staff, is heavily involved in clinical research and his off site office has the exact same set up as the hospital does.

  • raee_gw zone 5b-6a Ohio
    5 years ago

    It really isn't the "hospital" that dictates sedation for procedures. It is the medical staff.

    If someone is to be given sedation, there are hospital rules for what has to be done to ensure safety -- monitoring, who can assist, how many assist, what emergency equipment needs to be at hand (and those have to meet national safety standards BTW) -- but the hospital will not dictate which drug, or how much, or if any at all is given -- that is solely up to the MD.

    And truly, Versed is not given solely in order to create amnesia for the event (although that can be a distinct benefit) as much as it is to create relaxation (of the person and of any muscles involved), help them to endure/ hold still for an unpleasant experience, and quell the "fight or flight" response that so many people will exhibit involuntarily, even though they are voluntarily having the procedure. Fentanyl is a very effective and very short acting pain reliever with sedative properties -- no more "dangerously addictive" than any other drug of its class and has been a mainstay of general (operating room) anesthesia for decades.

    Any good physician will want to hear about, and should have asked, about any adverse experiences with such drugs, and be willing to work with you to ensure the best experience and outcome for any procedure.

    As I recall, Lamaze and his method were not widely accepted in the USA amongst obstetricians for decades -- it was women who learned of it, and insisted upon using it, that made it mainstream.


  • User
    5 years ago

    Things went well this time, good for you for standing up to them. While in hospital last year got blood tests every hour while getting a glucose drip. My dd asked the tech "why" when I do not have diabetes and they had to keep lowering the glucose. She was told it was "standard procedure" and my dd said "stop it". Shortly thereafter the tech came in and removed the drip . Almost all of this is all about the money. How many drs. come in to check on you ... I had at least two every time and they did nothing but look in, maybe say hello...and it was a nice bill for them. I don't pretend to know as much as some people, who are experts on everything and whose opinions are so much more worthy than anyone elses, but bottom line, almost everything is about the money.

  • chisue
    Original Author
    5 years ago

    lukkiirish -- Ack! I didn't mean to direct my comment about the stand-alone places to you. I'm interested, though, to hear about the different billing practices between your hospital and what I would liken to an outpatient facility owned by the hospital.

    Nearly all of the MD's in our area been forced out of single-practice or group practice businesses and joined hospital conglomerates. I get a bill from the MD and another for my use of the facilities in which she sees patients. I haven't (yet) been billed separately for her intake nurse (BP, height, weight, temp, recap of meds and symptoms) -- or for the linen drape and X yards of paper cover on the examining table!

  • User
    5 years ago

    That’s ok Chisue, thank you for that. Yes, in our area as well, the clinics are either owned by the hospitals now or at the very least, they are affiliated where they co-exist with a hospital but the hospital doesn’t manage it 100%. The services inside a hospital setting are always going to be more expensive and the billing can be very difficult to reconcile. You will see this when you start getting the bills for the biopsies you just had. And be sure to check the bill to make sure you weren’t charged for the things you refused. A lot of the hospitals if not most of them outsource the billing work to out side companies which results in lots of errors. You really have to be on your toes with it. I’m probably not telling you anything new, but am happy to answer questions you might have along the way. Gosh I sure hope the tests come back with better news than MM, my fingers are still crossed for you. :c)

  • DawnInCal
    5 years ago

    chisue, I'm happy to hear that the procedure went more smoothy than the first. I hope that when you get the results, you and the medical staff come up with a treatment plan that help you get better. Best wishes to you!

  • Greta Seward
    5 years ago

    "Fortunately, this mostly geriatric crowd is beyond child-bearing years." smh.... No sense in debating with Elmer, he knows everything.

  • FlamingO in AR
    5 years ago

    I’m glad the procedure went well this time, Chisue. And good for you (and the others) for knowing what you want done to your bodies and having the courage of your convictions. I know that if I’d ever had a bad reaction to a drug, I would be adamant that I never got it again, no matter what my doctor said. And you’d think they’d want to honor that since they don’t want to cause harm or get sued by your survivors, ha!

    Of course, if my doctor was unable to understand or respect my wishes, I’d find a better one. The best doctor I ever had was one that actually listened to me without feeling like her way was the only way. Man, I hate that she moved away.

  • chisue
    Original Author
    5 years ago
    last modified: 5 years ago

    I once had an excellent internist who joked that, "When everything else fails, we listen to the patient." He was 'old school' in a good way. When greeting me, he'd first take my hands and look at my fingernails. His physicals included GYN checks; he took stool samples.

    I dislike this era of medical 'specialists'. They treat a patient's 'parts'. The internist's understanding of you comes from piecing together reports on your parts. He doesn't know you as a whole. The specialists don't know you at all.

    Of course there are roles for specialists, and no one MD can keep up on progress in every field, but I miss the comprehensive general practice MD who has a historic knowledge of *you*.

  • User
    5 years ago
    last modified: 5 years ago

    The electronic record system (EMR) is supposed to offer a more efficient way for all your doctors to have a historic knowledge of you and I think in a lot of ways it does. Paper files are not only more unreliable, they are a mess and really time consuming for them to sort through.

    Once you’re diagnosed with something like Myeloma, eventually, you do end up with a team of doctors who will know you well, at least we have. What’s really important and often times overlooked is to make sure that you arrange for copies of the Dr’s notes to be sent to the other doctors on your team so each one knows what the other is doing. AND keep a file for yourself of every visit and test result and x-ray cd as well. You may never need it but when you do, boy is it handy. If you don’t and end up needing the records later, that can be more encumbersome to accomplish.

  • Elmer J Fudd
    5 years ago

    Thanks Greta!

  • Greta Seward
    5 years ago

    You're sincerely welcome, Elmer.

  • artemis_ma
    5 years ago
    last modified: 5 years ago

    Glad this time worked out for you, and I hope you get accurate test results so if you need to, you can go forward. Hopefully, you won't need to.

  • amicus
    5 years ago
    last modified: 5 years ago

    chisue, I'm glad it worked out well for you!

    Elmer, many people who want to have a procedure done without sedation, are not just blindly insisting, or thinking they know more than the doctors. But their personal medical history has shown them what they can tolerate, and which specific drugs cause them adverse side effects. All my children were born natural and my colonoscopies have been without sedation, because my mindset is 'less is best, unless necessary' when it comes to medical procedures.

    When I went for my first colonoscopy, I asked the doctor if the procedure was ever done without sedation. He said that he himself has never had one done with sedation, (and mentioned it's common in many European cities) but that sedation is standard in Canada. However, he was willing to allow me to try without sedation, with an I.V. standing by.

    I had no type of medication beforehand. There was only about 4 seconds of discomfort, and it was really fascinating to watch the procedure, during which he removed one polyp, which I couldn't feel at all.

    When we moved, the new doctor only capitulated to not sedating me, after learning my first one was done that way...and I've never yet done one with sedation. That said, I have no problem with having the I.V. at the ready, in case I need it. I don't know if many doctors will allow this option, but one has to sign the 'we're not responsible...' waiver with or without sedation, so I'd rather be watching the procedure, than not be aware of what went on, whenever possible.

    I just wanted to share that asking your doctor questions is not questioning their competence. It's showing them you are intelligent enough to want to be informed of any alternate choices that may affect you negatively, physically or mentally. Only a pompous, arrogant doctor is defensive about answering questions, and why would you want someone like that to perform your procedure? I asked questions, and the colonoscopy doctor answered. I otherwise would have never known it is possible to have one done without sedation.

  • chisue
    Original Author
    5 years ago
    last modified: 5 years ago

    Another negative for colonoscopies with sedation is that when the doctor comes in to talk to the patient in recovery, the patient is still suffering from the sedation and very likely will not recall what he's told. I have always stayed with my DH in recovery -- and he with me. He has never remembered anything the doctor said about polyps removed or whether there should be follow-up on them.

    I have suffered brain fog for months after colonoscopies where Versed was used, but didn't put two and two together until Alisande posted about this here on the KT. Then I asked a couple of MDs if they used Versed. The answer was no. They said they needed to be sharp the rest of that day, week, etc. They used Propofol. (I never thought to ask if any used *nothing*.)

  • Elmer J Fudd
    5 years ago
    last modified: 5 years ago

    amicus, I tried to express my thoughts by distinguishing between the importance of supplying relevant information and experiences for the doc to apply their experience and professional judgement to, versus what I think is out of bounds, telling a doc what to do and not do. I've had colonoscopies, always preceded by a long (maybe 10 minute) conversation with an anesthesiologist asking about prior experiences, reactions, etc, and I think usually finished with a question "anything else about you I should know". I let them do their job.

    I too have been awake during most of the procedures and enjoyed watching the TV screen. It reminded me of the old move Fantastic Voyage. We have a video of a family member's arthroscopic knee surgery. That's interesting too.

  • wildchild2x2
    5 years ago
    last modified: 5 years ago

    This seems to be all over the net right. Sort of timely for this thread. :-)

    Doctor: Don’t confuse your Google search with my 6 years at medical school.

    Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it.

  • gmatx zone 6
    5 years ago

    Watchmelol - I wish I could "like" your comment many more times than just once! As a retired RN, I can assure you that your Doctor/Patient scenario above is so very, very correct. Some doctors only want to acknowledge the textbook information they have been taught, not the actual effects that can vary from patient to patient for the same illness/injury. And guess what, that patient is the only one who can offer the actual effects for the doctor's use to build a treatment plan as they combine the textbook information with the patient's information. There are many time that a patient may have symptoms that are never mentioned in textbooks. Thank you!

  • PKponder TX Z7B
    5 years ago

    How are you doing Chisue?

  • chisue
    Original Author
    5 years ago
    last modified: 5 years ago

    PK -- You are kind to ask. I just posted more detail on a thread about insurance costs -- before I got to this one.

    I've been diagnosed with MM and am to start chemo at the end of this month: A shot of Velcade and 40 mg oral dexamethasone once a week for at least the foreseeable future (6 - 12 months), in pursuit of remission. IF I get to remission, I'll have some kind of chemo for the rest of my life. (If I don't get to remission, I'll try to come by to say good bye.)

    I'm to meet with the hospital cancer center's staff next Wednesday to 'hear all about it'., supposedly including how to combat the side effects. I suppose they will also be silently assessing this new patient.

    I dread the steroid. You may be seeing a lot of me here. I'll certainly be *wired* and crabby and verbose! You may be spared if G.I. upset is too fierce.

  • PKponder TX Z7B
    5 years ago

    I'll hold you in my thoughts


  • DawnInCal
    5 years ago

    chisue, I'm sorry you didn't receive better news. I hope you do well with your treatments and that your medical team gives you confidence in their abilities. I will also have you in my thoughts. Keep us posted how you are doing - you'll have a lot of support and shoulders to lean on here.

  • ldstarr
    5 years ago

    Chisue, I'm sorry you will have to go thru this. As difficult as your next months may be, remember to always, ALWAYS, advocate for yourself. Speaking from experience, if their "standard" anti-nausea medication isn't providing relief ask for something different. There are lots they can try, and thanks to an older nurse during one of my 3 day chemotherapy sessions, we found one that completely relieved my symptoms. Also, depending on the facility (I hope a research/teaching type setting) they may have lots of education/alternative therapy/support available. I found that a tiny vial of Burgamot oil that I could sniff would instantly settle a queasy stomach. Everyone is different and everyone reacts differently to chemotherapy. Reactions can even vary from session to session. When something isn't going well, speak up. Do not suffer in silence, they can help you thru the side effects.

    Please know that you'll be in my prayers each day and that I will think of you often. I hope you're able to achieve remission.

  • happy2b…gw
    5 years ago

    Chisue know that you have my support and prayers.


  • OutsidePlaying
    5 years ago

    Chisue, I am sorry it wasn’t better news. You know you will always have friends to talk with here and who will be your support and prayer network. I hope you have family and friends close by who can be by your side during this time too.

  • User
    5 years ago
    last modified: 5 years ago

    My heart is sad for you Chisue but with the plan they have in place, it seems like you may have caught i before the lesions have spread too much. My DH had the Valcade as well but w/an IV and to our surprise, he did not have any of the issues one typically associates with “chemo”. He also had that same steroid for a short period of time; they stopped it within a couple of months, though I don’t recall why. Again no issues when he did. He’s been on a low dose chemo regime since 2013, Revlimed and again other than being a bit tired, he’s had no other side effects. I’m hoping your treatments go as well.

  • chisue
    Original Author
    5 years ago

    Thank you all for your kind words and support! I'm comforted by all, and especially by being able to hear from people who either have a blood disorder cancer or have family and friends who have one.

    I got my hair colored and cut today and launched into an explanation of MM. My hairdresser stopped me, saying she had never heard of MM until three weeks ago when another client explained it to following her diagnosis.

    Something must be changing in the MM world. This can't be 'as rare' as the literature claims. It could be that people are living long enough to develop it. It could be that drugs are achieving more remissions. When my mother died of it forty years ago, remission was rarely achieved with debilitating chemo, and the only other 'treatment' was a series of transfusions until the patient said, "Stop."

    Ah, bergamot...isn't that what gin is flavored with? (This may not be so bad after all. haha)


  • User
    5 years ago
    last modified: 5 years ago

    It’s a little of both Chisue. Our Oncologist(s) have all told us that there have been many many new medications to help control MM. And while the number of younger people getting the disease has increased, the remissions are lasting longer and longer as well. DH was 48 when he was diagnosed and has been in remission for 6.5 years. At that time the average remission was 3-5. They are even starting to think of it as a long term chronic illness as opposed to “cancer”. But here’s the thing, if you haven’t already, now would be a good time to evaluate your diet and shift your dietary thinking from just “healthy” to “healthy and immune building”. It’s crucial because even though the maintenance drug you will be taking is low dose, it’s still going to quash your immune system which can and will make you more vulnerable to other illness. Having a diet that focuses on immune support really does help. Another thing you can do to help your body is to switch to a vegitarian diet. Animal protein can be hard on the kidneys. Switching to a plant based protein instead will keep them healthy too. Foods like Garlic, Beans, Onions, Mushrooms, Berries and seeds or more commonly known as G-Bombs are all immune builders. Avoid Dairy products that are animal based as well as foods with sugar, yeast, or fructose syrup in them. If you do a search for G-Bomb foods you will find more information on it. It works.

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