To dex or not to dex. That is the question.

The myeloma doc who is responsible for me introduced himself yesterday with the comment it was probably a little remiss we hadn’t met before.  He then attempted to persuade me to take dex.  A smaller dose which he didn’t think would cause the issues I’d had before – he wouldn’t however agree to putting that in writing.  I had described some of these ‘issues’ to one of the junior docs but didn’t feel that got across just how horrendous it was for us all.

I therefore did a list last night for their consideration – it describes someone completely different than the happy go lucky Paula you all know and love.  I’ve thought about posting about it in the past but decided to leave well alone.  Since I had to re-visit me on dex I took the not easy decision to share with you.

Washing hands, washing me, opening and locking doors, stepping over thresholds, different surfaces, if I attempted to knit I couldn’t bear to undo it.  I’d start to cast on and then leave it for days before I could pick it up again in case something bad happened.  Couldn’t use the stove as kept turning on and off.  Couldn’t get dressed.

Couldn’t sit next to B in case something happened to him.  Couldn’t wear green on a Friday or knit for a week in case anything happened to Auntie Ann.  Thought B was going to be attached by a bear.  Couldn’t stand reflections of anything.

I repeated nonsense phrases to try and keep my mind off stuff even under my breath in public to a noticeable extent.

Was prepared to wrestle B to the floor over some ice cream I left and didn’t want him to eat.  Aubergines and black and white movies produced a near hysterical response.

I used to shake.  I would run my hands under super hot water until they were bright red.  I maybe slept two hours and would wake up with nail marks in my palms.  I would scratch my thighs with a very pointy knitting needle.  I ended up with a very large bruise on my forearm as I couldn’t stop pinching it after having a canula in.  I used to go into the garden and cut down brambles resulting in tons of scratches everywhere.  I gave serious consideration to killing myself because I couldn’t live like that even though I knew it would devastate everyone I knew.

I made a comment about pushing the mother in law down the stairs and it was decided she shouldn’t call as I wasn’t joking because I had no sense of humour at all.

There were none of the ups and downs I’ve read about.  This was all the time.  Looking back I was lucky not to damage my femur as I would give myself a deadline for something eg, bed and run upstairs and leap onto the bed otherwise I would stand at the side of the bed for half an hour because it was really important which foot I picked up.

I could hardly make a decision on anything.  B had to decide what we ate and if he attempted to take me shopping I couldn’t pick anything off the shelf or touch it to pack it and a lot of the time wouldn’t then eat it anyway.  I lost about a stone in weight.

I couldn’t stop counting things.

I was wound up all the time.

I couldn’t cry (an uncle and a friend died).  I couldn’t laugh.

I could go on.

I will fully understand if no-one comes back tomorrow!


15 responses to “To dex or not to dex. That is the question.

  1. I too thought about what I should do, I’m now on double the dose I was last time. There is no point in saying anything one way or the other as only you know and can decide what to do with the support that I know you have. Big big hugs to you, as long as you promise not to squeeze me too hard as my platelets are pretty low :p and I will probably cry like a little girl!


  2. I have tears in my eyes reading this:
    You poor darling to have to make such a decision. H hated Dex also, having some very strange problems while taking this drug. It did I must say, settle down after they reduced the dosage greatly.
    I arrived at the hospital one day after he first took it, to find him in his suit which he had put on over his PJ’s, not the best look I’ve seen! He was intent on escaping and tried to walk through a plate glass door.This was a quiet reserved gentleman who was intent on walking 60 miles to find me!Some manage well on it, some do not and often mixed with other drugs taken, the combination can be so very difficult. Please do show your list to your consultant so they fully understand.I am thinking of you and SO wish you well xxxx hugs from me to you xxxx

  3. As I commented on an earlier post, I dread Mike taking dex ever again. I wasn’t joking when I said I’d call off June 14th if he is on it. Stay strong x

  4. This is a quality of life issue, so now is the time to tell em to stick the Dex up their arses. No way do you need to go through all af that again. I was lucky and only Lorna and a few people on the roads suffered my wrath, but I still don’t want to visit dex again! As for not coming back today because of your comments, I am presuming that they have snuck dex into your coffee, because you don’t normally say things THAT stupid….lol x. I have a problem telling consultants and doctors not to feed me intravenous fluids because it makes me extremely poorly every time, but in the end I got used to just making it very plain I was not having them however quick they said I would die if I didn’t. Told them I was right and they were wrong and to get used to it. It worked and I was right….I think.:-0
    One thing you must realise is that these friends out here such as us , are true friends as you are to us, and dex or no dex, bad tempered bad mannered or just plain phsychotic, does not make a scrap of difference to that friendship, you silly bugger! xxx

  5. FL says – can he please have your dose too – he loves dexies! He is being sarc-y, I hope, because I do not have good memories of FL on dexies. The fear of carrots springs to mind. Talk of walking out into the snow with no clothes on. Deciding to seek planning permission for a golf course on the farm. He basically thought he was superman but was really weak and shaky at the same time. (Carrots were his kryptonite!)
    However…. dexies do apparently make the velcade / revlimid more effective. I suppose they drive the other drugs through the system that bit faster. But definitely definitely ask about a reduced dose, for your own personal safety and sanity.
    Hugs from us!

  6. Blimey – step away from the edge, girl!

    Sounds absolutely horrific. Don’t blame you for not wanting a repeat performance, although – if there were positive side – it did give you a break from your favourite m-i-l!!

  7. That is just absurd. What are the benefits supposed to be?

  8. Well, I think it’s obvious that Dex sends you into obsessive-compulsive disorder and I’m being serious here. That is no way to live and many others react very severely to it so this is not as shocking as you think. I do know of people who use Medrol and tolerate it much better than Dex.
    That is one option to try though I’d still start low to test it out. BUT, if you really don’t want to re-live this(and who would), I think you need do nothing more than bring B’s mum to your next appt. I believe they will change their minds about the Dex straight away for
    the sake of her safety. ;o). (Sorry B, I had to get a joke in there somewhere). And none of us MM toughies are running anywhere. Honesty and “telling it like it is” always ranks people way up on my respect list. I know without a doubt that my friends and family would run for the hills if I was ever on that
    Dex. As for how Tim would deal with me……. well, I’d have to get the pistol out of our house!

  9. Yowswer… nothing sexy about Dexies for sure and I think there has to be another solution. So I am intending one… are you taking any curcumin? I have heard there are some clinical trials using it in combination with other things. In any event, I am here today because you are there and will be for as long as you want me to be – none of this silliness about not coming back!

  10. Wow, Paula. I don’t blame you at all for venturing forth with dex with some trepidation. I hope that a lower dose, if you choose that, will do the trick. During my initial induction phases I was taking 40mg x 4 days. Rough side effects, but not like yours. I’m now in a maintenance phase where I get weekly Velcade infusions (63 weeks now), take revlimid for 21 days on/ 7 days off, and take 20mg of dex on the Velcade infusion day. The lower dose’s side effects are much milder. As always, best to you on your decision. Sean

  11. Silly bugger, indeed! I am adding my name to the list of those folks who love you and will come back tomorrow and the day after and the one after that and…well, you get the picture… 🙂
    Wow, I knew that Dex caused some rather weird side effects but nothing like what you experienced…how bloody scary!
    I have to say that I don’t understand why the docs keep talking to you about this treatment or that treatment when your BMB results haven’t come back yet…I mean, what if your symptoms are caused by a bothersome bug (bugger!) of some sort?
    Well, in the meantime, all I can do is send you bear hugs from Firenze…big bear hugs! 🙂

  12. What a timely post for me. I have been on dex for two years now. Some of the side effects are diminishing and many are getting worse. I am getting all the major tests done today-MRI, Biopsy, and labs. I meet with my Myeloma oncologist on Tuesday. I am really considering quitting the dex. I hate it! I used to have a couple good days while on it. (20mg days 1-4 every three weeks) Not anymore, and when I go off of it I crash and burn! I can hardly function for two to three days. My symptoms don’t seem quite as bad, but no one better cross me on those days and I cry over the stupidest things.
    Sorry to be so whinny. It is just good to know there are others out there going through these challenges. Thanks for sharing and may your happiness and health continue to improve, Kris

  13. Dear Paula,

    You are a brave woman. Not just for making it through such agony, but also for being willing to relive such painful memories in order to share with the rest of us.

    How is it that you have such spirit?

    Blessings to you, Paula and to B.

  14. Paula- thank you for taking the humility to share such insights into your life. Both Myeloma and Dex need to get the hell out of dodge. Keep being you. -Phil

  15. The science may actually be on your side for refusing dex as well. If less is better none might be just right! Dex suppresses natural killer cells which are handy when you want them to kill myeloma cells. Who knows what might get killed if you are on dex?! Stay away from eye patches and long swords:


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