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Hi everyone

 

My 18 month PCR test is being done tomorrow, and this last week I've been experiencing two things that I hope are side effects and nothing more sinister.  I would be grateful if anyone who has had these two experiences could comment and advise.

 

First, I'm experiencing an overwhelming anxiety, fear and sense of dread.  Tiny things cause me to overreact and things that I wouldn't usually get upset about are becoming huge, life-threatening problems for me.  I liken it to a terror attack on my body.  While I don't believe in taking anti-depressants or anti-anxiety drugs, I'm really struggling with the feeling that the next PCR test is going to show some more bad news.  This is partly because I haven't hit MMR 15 months on, but it's really interfering with my daily functioning.  I can't sleep, wake up at all hours with terrible thoughts, can't concentrate on my work, become irritable with everything and everyone.  Has anyone else experienced these types of emotions and, if so, how do you deal with them?

 

Second, about 10 days ago I suddenly found a strange lump on the back of my head - approximately 1cm in diameter, painless, smooth and movable but rubbery.  It hasn't gone away but also hasn't gotten worse.  Because of the "sense of dread" described above, I'm terrified that this is the beginning of lymphoma or that the CML has somehow spread into the lymph nodes - not sure whether this is possible?  I managed to get an appointment with a dermatologist today and he immediately put my mind at rest, saying that it was an abscess, and he then said that it could be drained easily with a local anaesthetic.  Unfortunately, when he tried to drain it, there was only blood inside - not the pus and fluid that he was expecting - and he confessed that he was stumped as to what it could be.  He has given me topical antibiotic cream and isn't ruling out a possible malignancy - if it doesn't disappear in a week, he is going to refer me to a dermatological surgeon for surgical removal and biopsy of this "cyst".

 

I know that people say that those of us who can't remain positive have a worse prognosis, and I desperately want to cope more effectively with this fear without the use of drugs.  But on the other hand, there is so much to deal with, especially if one is not responding optimally to the drugs and then has some further bad news thrown in!  Any advice would be greatly appreciated!

 

Kind regards and best wishes

 

Martin

Hello Martin.

I was diagnosed in april 2016, in what they call "advanced phase", here in Italy at least: no real marker of the accelerated phase, so technically chronic, but a number of signs of worry, and indications that CML had been developing for a while. I had lost a lot of weight, was anemic, had an enlarged spleen and myelofibrosis. Because of that I was prescribed Sprycel at 140mg, that is basically the strongest you can get as a first line treatment.

I can definitely relate to the anxiety, especially turning back the clock. The initial phase of my therapy was pretty much what my doctor called "sailing by sight", or groping in the dark. Every few days my blood levels were checked, to see the hematological response and make sure my WBC and platelets count didn't get too low. My WBC did get too low, and I was "semi-quarantined" for a few weeks: no crowded places, etc. For a few months I was in a suspended state.

I remember one day, I had to drive to Milan for work. I hadn't been driving a lot lately, for my parents and wife were escorting me around all the time. I was on the freeway, and I felt my chest heavy and a sense of oppression. That sensation, linked to driving, lasted for a while, and happened regular when I was driving alone. I realised later it was strong anxiety, which is quite understandable given the context.

A few months later things were going much better, but I found out I had an instance of pleural effusion. Not too extended or severe, but still. I was prescibed diuretics and prednisone. I was not told that prednisone can cause anxiety as a side effects. A couple of days later after dinner I was quite sure I was having a heart attack. I went to the ER to be checked. Luckily it was just my imagination, and prednisone.

I can also relate to the lump scare. A few weeks after being diagnosed, I noticed a new mole. I have quite a few of them, but this seemed new, and irregular, and big, etc. I was sure I'd have to remove it and get a biopsy. My dermatologist dismissed it as a normal mole, nothing to worry.

Months later, I felt one of my neck lymph node was swollen, and again I was scared. And again it was a false alarm, the size was normal.

I believe a level anxiety is inescapable when you have CML.

Now I am in a much better shape, probably because of the high dosage Sprycel: I was lucky and reached MMR in 9 months and now I am fine; pleural effusion is still there, but we're hoping it'll go away with a dose reduction to 100mg.

But of course every new side effect or strange symptom is a source of worry. The latest one is a swollen ankle, because of an insect byte.

I don't think there's a cure to anxiety, not as long as you have CML, but a couple of things can help reduce it

First, getting checked by your doctors; you are already doing that, and that's the best you can do. With an expert opinion you can get rid of anxiety, and make sure you don't have another serious issue. It's a win-win.

Secondly,you can take care of your mind with meditation or similar practices. It sounds like a cliché, but there are tons of studies showing the benefits of mediation. I am a student of the Alexander technique, which isn't meditation in the strict sense; I have also been using the Headspace app and website for a while. It's not an instant cure for anxiety, but it gradually ease your mind.

I hope you'll get a good feedback from you dermatologist, and I wish you good luck with your anxiety.

Cheers,

Davide 

 

Hey, Martin. 

I have some words: as you know, i had problems with my response too and i had many "scaries" during my first two years. I have too had/have a lump and was really afraid about it but it was just a minor problem, not cml related. 

I know it's hard to relax while you're not MMR and i know we always think that "new problems" are caused by CML, but, yes, we can have many other health problems not related to cml or to treatment because we are humans, we get sick, we get cured. Maybe it's time to find some relaxing activities, maybe some sport or yoga. Try not to worry much. you're doing fine. There are many turtles here and most of them do great during long term. 

Cheers.

Hi Davide and Lucas

Thank you both so much for your detailed replies and for your reassurance.  It's weird how I am like a different person in the week or so before I have to go for the tests - I barely recognise myself and feel as though I have to avoid people in the days leading up to my appointment.  Your stories about your own swollen lymph nodes also helped a great deal - as you both say, it's easy to think that everything is cancer / CML related when often there is a far more innocent explanation!

Davide, thank you for suggesting the Headspace app.  I'm definitely going to try mindfulness or meditation to calm me down - it's great that you have had some success with it.

In the meantime, I wish both of you every success for your own recovery.  May a cure be found sooner rather than later.

Best wishes from a wintery South Africa

Martin