Here we go again…

..back down to London for another appointment with the consultant. I shouldn’t really complain, but I think this is one of the most difficult and ongoing parts of the myeloma journey. Unless a miracle cure is one day found this will always be part of my life.

Visiting the doctor to discuss the current state of affairs.

Whether you have MGUS (monoclonal gammopathy of unknown significance), this is a pre-cancerous condition where the body makes an abnormal protein, called a paraprotein, that’s found in the blood, and was what I was first diagnosed with in 2008.

Or smouldering myeloma because your numbers are creeping up or you are starting to develop symptoms.

Or full blown myeloma, waiting to see the consultant to find out the next bit of news can be pretty anxiety provoking.

It is as we discussed yesterday, one of those ‘what if’ scenarios and I am not sure how easy I am going to find turning this one around and making the shift to excitement.

There is no getting away from it and that quite honestly this myeloma lark has become a bit of a bore. I would now like to get back to work and on with my life, maybe not quite as it used to be , as this experience has taught me a thing or two, but at least back to some kind of normality.

If I look at the bright side of things in my usual Pollyannerish way, I can be grateful for not being in more pain, for my vital organs to still be functioning as they should, and for the excellent medical team who are working with my body and doing there very best to keep the cancer cell count down and stop the buggers from reproducing.

If you look Multiple Myeloma statistics up on the Cancer research UK site

http://www.cancerresearchuk.org this is what you get;

  • Myeloma is the 17th most common cancer in the UK.
  • Around 4,700 people were diagnosed with myeloma in 2010 in the UK, that’s around 13 people every day.
  • Myeloma is the 16th most common cancer in women with around 2,100 new cases diagnosed in the UK in 2010.
  • In 2010, around 2,600 men were diagnosed with myeloma in the UK, making it the 15th most common cancer in men.
  • Around 7 out of 10 myeloma cases occur in people aged 65 and over.
  • Myeloma incidence rates have remained relatively stable over the last decade.
  • In Europe (EU-27) there were an estimated 31,800 new cases of myeloma diagnosed in 2008.
  • Worldwide, an estimated 103,000 new cases of myeloma were diagnosed in 2008.
  • Data for England show that myeloma is almost twice as common in black people as in white and Asian people.
  • Myeloma is preceded by an asymptomatic condition Monoclonal Gammopathy of Undetermined Significance (MGUS). Most people with MGUS do not progress to myeloma. Like myeloma, MGUS is more common in older people, men, and black people.

Recent advances in myeloma treatment mean survival rates have improved rapidly.

  • Five-year survival rates for myeloma have more than tripled over the last 35 years.
  • More than a third of myeloma patients in England now survive their disease for more than five years.
  • Around one in six patients diagnosed with myeloma in England and Wales will survive their disease for at least ten years.
  • People diagnosed with myeloma in England and Wales are now more than three times more likely to survive their disease for at least ten years than those diagnosed in the early 1970s.
  • Younger myeloma patients have a better prognosis than older patients.

So I am a pretty rare commodity as I don’t fit the most common patient profile of being over 65, male and black. I always wanted to be something special, stand out from the crowd so now I have got it.

Well I am going to build on that uniqueness by being so amazingly special that I beat all the odds and survive this cancer for well over 25 years! Even 25 years doesn’t sound that long but I suppose that will take me to 75 so I will settle for that and not get greedy!

Perhaps today I will be reassured everything is going in the right direction and that I am getting close to being in remission.

The best scenario is that my numbers have dropped again ( I won’t know this for a few days) and I will only need one or two more cycles of treatment. If this happens and my para proteins ( the cancer markers) are of a unquantifiable quantity then I believe after my next round of chemo I just sit and wait for the next consultant appointment to discuss the next current state of affairs.

Realistically I think they will listen and learn about the side effects I am experiencing, mainly that dreaded neuropathy, and then make some major decisions from there.

To me the options are:

1) Take me off Velcade altogether and maybe try another drug like Thalidomide this will mean coming off the trial :- (

2) Give me another break from the Velcade, and see if the neuropathy symptoms go
away, whilst continuing with the other chemo I am receiving.

3) Reduce the dose of Velcade I am receiving and monitor the situation closely.

I think I prefer option 3 although I am concerned about the continuation of the side effects which could become irreversible if we are not careful.

Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. The condition is generally referred to as peripheral neuropathy, and it is most commonly due to damage to nerve axons. Neuropathy usually causes pain and numbness in the hands and feet. It can result from traumatic injuries, infections, metabolic disorders, and exposure to toxins

So more toxins could increase the risk of further neuropathy but on the other hand carry on doing its good job of killing off the cancer cells.

Anyone got a dice we could roll? it all seems a bit of a game of chance to me.

Oh well, I will choose to remain focused on the other events going on this week, such and Colin’s hospital appointment tomorrow and Jem’s 24th birthday, then the exciting Village Secrets event on Friday. I did well yesterday with my preparations for that so feel confident all will be ready in good time.

Have a good day

Deborah

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10 thoughts on “Here we go again…

  1. Thanks for the survival stats. I’d not seen them so clearly laid out before. It seems to me that there are more younger people being diagnosed but maybe they’re just the people I’m drawn to connect with…? Like you, I don’t fit. But as you’ve probably become aware, actually very few of us fit statistics, because we’re not numbers, we’re individual people… and there’s no way of knowing which ‘experience’ any of us will get. I wonder if that helps with the excitement element? Like Pass the Parcel… What will your package contain? Hope you find something nice n shiny in your parcel today. x

  2. Good luck to both of you this week. Dreamed good things about you and Colin last night so I’ll take that as a very positive sign!

    Love from the wetherilts xxx

  3. Lets go for 10 years hey Mum… Otherwise in 20 years you’re likely to be a Great Grandmother as Elliot will be 21… 10 more years of you nagging (as I’m 24 tomorrow) will make me basically mid 30s… this means you’ve got lots of time to nag. Let’s face it, if I reach my 40s with you still nagging me then you’re going to feel pretty old seeing as I’m your youngest :). Anyway jokes aside I love you & I hope appt goes well today. Look forward to seeing you tomorrow πŸ™‚ xxx

    • Thanks Jem but I would rather another 20 years! I hope you’re not going to try and get rid of me after another 10!
      Being old is better than being dead I think.
      Xxx

  4. Still an avid follower of your daily blog;now ranks before switching on LBC !

    Thougts with you for good encouraging results
    Love Jack

  5. Hello Deborah

    This is a bit of a random message but i wanted to share this with you, so you can get others involved in making a really big different by taking very small actions from the comfort of their own homes (even in their pjamas)! Micro-volunteering is the current in thing in the voluntary/charitable sector πŸ™‚

    http://www.cellslider.net/ (it really is quite addictive, much better than facebooking)

    Research is killing cancer.
    CRUK and the Zooniverse team ask for just a few minutes of your time to analyse real life cancer data. Anyone can do it, and everyone will make a real difference.
    Cures are within our grasp and one day we will beat cancer. You can help us to make it sooner.

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