If you want something done, you had better do it yourself, people!
FL's symptoms were bothering me. Dr T's attitude bothered me. I felt like we were missing something important. So yesterday I did some research on the web and found a very helpful Powerpoint presentation by Shirley D'Sa: "Peripheral Neuropathy and management of neurological side effects of myeloma treatment". Snappy title, huh?!
It isn't exactly a Ladybird Guide to Peripheral Neuropathy (PN), but I can read flowcharts. And guess what I found?
There are four key side effects to Velcade: PN, Autonomic Neuropathy, Gastro Intestinal toxicity and fatigue. How many of these does FL have? All four. How many have been acknowledged by the hospital doctor? One - the PN, which has been attributed to his previous Thalidomide regime.
Somebody (Dr T, I am looking at you) is either in denial about the side-effects of Velcade or just doesn't know. Either way, it isn't helping FL.
Lets go further into the presentation:
Sensory Symptoms
•A sensation of wearing an invisible "glove" or "sock"
•Wooden quality
•Numbness, pins & needles
•Feeling of walking on pebbles
•Feeling of tightness & swelling
•Burning sensation or freezing pain
•Sharp, jabbing or electric shock-like pain
•Extreme sensitivity to touch
•Usually worse at night
•Loss of balance and coordination
•Cramps in the feet and calves
Motor Symptoms
•Tripping on the toes
•Loss of grip strength
Autonomic Symptoms
•Dry eyes
•Dry mouth
•Orthostatic dizziness
•Constipation
•Diarrhoea
•Bladder incontinence
•Sexual dysfunction
I took FL through the list. It was immediately clear that he has text-book side-effects.
We looked at the Velcade Nursing Assessment (slides 17 and 18) and realised that his dizzy episode in the infusion room should have triggered a diagnosis of Autonomic Neuropathy at Grade 3: "Postural drop and regular dizziness" - because he is very honest about not being able to stand up without gripping a nearby table, and he immediately stoops to correct himself.
And this should have led to an immediate cessation of treatment. Not a Spanish Inquisition about why he wasn't eating properly!
I am grateful that his Velcade has been stopped, but I am not convinced that Dr T was aware of the reasons why it should have been stopped. She gave the impression that she had lost her temper with FL and given in to pressure from him to stop the drugs, which he had been reluctant to take in the first place. When, in fact, a logical clinical assessment should have led to the same conclusion, with the additional acknowledgement that he needed help to control the side effects.
So he is off to his GP today, clutching my notes, with a request for effective painkillers to allow him to sleep at night and to counteract the electric shocks. To allow his body some rest and recovery time. An anti-convulsant, possibly alongside a tricyclic antidepressant? But hey, I am not a doctor, and I know a little knowledge is a dangerous thing.
But shouldn't the real doctors be doing this research, not me?
LATER:
FL's GP said "Side effects go with the treatment and have to be tolerated". He was sent home with NOTHING! Not even Paracetamol.
What a load of total bollocks! Ringing the Macmillan Nurse to get some sense out of the medical profession.
8 comments:
grrrrrr...sorry to hear about your frustration, but I am glad you are finally getting some answers...even though you had to discover them yourself.
My experience here is that they are very quick to provide medication to handle side effects...and I actually get annoyed! I am one who prefers to tolerate...although I learned that chemo is nothing like a minor headache that comes and goes!
I hope the Macmillan Nurse has been able to help you both. So far our GP has been wonderful, although it is very early days, Mike was diagnosed on Feb 1st and has yet to start treatment. I was pleased to hear you shared a wonderful Valentine's meal.
Lorna
There is a difference between "tolerating" something and having it cause additional problems which will affect the long-term objective! Keep pushing for FL and make those doctors wake up!!! You are doing yourselves a big favor to NOT entirely trust the medical team and to ask lots of questions and then to DEMAND answers. In this case the squeaky wheel will get oiled and probably get better treatment!!
That makes me really angry, so lord knows how you guys feel. What is it with these people? They should be pulling out all the stops to alleviate the symptoms. I'd definitely go with the Macmillan nurses. The one or two that I have known have been fantastic, so fingers corssed.
At least our GPs are good. How fantastically frustrating overall but particuarly that after all this time, the first time FL asks for pain medication he gets refused!!!!! I would imagine making him feel like he was just 'complaining unnecessarily'. I practically had oramorph pushed on me when first diagnosed on the basis that you feel better if you aren't in pain. Not that it helped that much at the time but it's the thought that counts.
oh, flippin' heck - those doctors! I hope the macmillan nurse has helped. x
I was sadden to read this post regarding Fl's treatment at both the hospital and his local Doctor.I had to leave my reply for another day as I was SO mad.
I am afraid that H cannot manage at all without his daily six paracetamols and two Nefopam,they help him so much with moving and his comfort level - I am aware that Fl does not like to take these pain helpers but they do bring such comfort and why would the Doctor not believe they were so necessary for him? it's hard to understand that logic! it must be so visible now. You MUST be fuming.
As to the hospital not picking up on the obvious contra Velcade symptoms, just amazes me. How could these have been missed, surely she only needing to look at him? and what a flippant attitude. Dr T should be keeping up with all recent presentations or should not be prescribing these very strong chemo drugs that need such careful monitering.
Thank goodness for your sharp and wise knowledge that sorted it all out at least for the present. I congratulate you for standing firm. You already know how we have debated Velcade - I know that H must go forth with it but like you I shall be keeping a vigilant watch - Oh what a beast this MM is.
Keep strong and all very best wishes for Fl X
I hate when that happens. Some docs are so not up on side effects. When Tim was first diagnosed, I asked his primary care doc why he seemed to be red-faced sometimes(he was in hosp. for 8 days for strep sepsis and dx'ed with MM during this stay). Tim was very anemic and he never gets "ruddy" so it made no sense to me. The doc says, "maybe he is getting flushed due to fevers."
This gave me a start as he had not gotten any fevers after they began antibiotics that I knew of and if he was, that meant he was not getting rid of the sepsis well.
I read later that dex(which he was on for swelling in his throat) causes that exact skin flushing and it is a classic, well-known symptom. That doc has since left our practice and since this was only one of many dumb things he did/said, we don't miss him. It gets pretty aggravating when you have a staff of doctors working on your hubby and you are the one with the answers.
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