5 years living with Leukaemia

Well I guess the title should read 5 years living with Leukaemia and knowing it.

This anniversary had nearly passed me by until a little bell went off in the back of my head.  I actually had to go back to my very first blog post to confirm that it was the 12th of December 2006 that I was diagnosed with CML.  Wow that was 5 years ago, so much has happened since then, mainly good that it is really hard to actually recall my feelings and state of mind those first few weeks.  At the time I had no real concept or thoughts about would I live for 5 years or what would live look like in 5 years time, everything was very much a short term view, the next hospital appointment, the next set if test results and the worrying in-between.

But now I can reflect a little and look back (and forwards) over the last 5 years to see how much of life has changed, and in some ways so much has stayed the same.  CML is part of my life of course but it is not the defining thing, or the all consuming element that was driving all parts of my and my families lives.

So a little update (something lacking on here) from me and how things are going.

My PCR is down to its lowest ever 0.037%  which is god news.  The dasatanib seems to be working and I tolerate it much better than imatinib with virtually no side effects.  The only slightly discomforting side effects are:

  • dead arms in my sleep that regularly wake me up, but I generally fall back to sleep quite easily.
  • fingers that seem to loose all the blood when they get cold, which of course is happening all the more during the winter.
  • and some at times painful acne in strange places like my legs and chest.

But all things I can live with.

Also being on the newer drug has one great side benefit in that I have been able to exercise more as I  don’t experience some of the problems I used to.  So I have over the last few months been doing a lot of running, more running in fact than I have ever done.  You can track my activities on RunKeeper (http://runkeeper.com/user/robmargel/profile).  This additional exercise and I think in some ways my bodies reaction to how it deals with the new drugs have meant I have also lost 10Kgs which has made me feel very positive, as well having to buy a new suit! (well it had been 10 years since I bought it to get married in)

Since my last update in March so much has been going on and below are a selection of them:

WP_000052WP_000060WP_000040WP_000095WP_000097WP_000079WP_000112WP_000127WP_000140

So here is to another 5 years (at least)

Rob

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6 weeks on Dasatanib update

So following on from my last post about my struggles with Dasatanib on the first night I am pleased to say that in the following 6 weeks I have been tolerating the medication really well when compared to Imatinib. All the side effects on the first night have largely gone plus on the plus side:

  • I have had no cramps at all which I suffered a lot with Imatinib
  • I have not had any stomach issues at all
  • My Eczema has largely cleared up and my skin feels less dry in general
  • The ability to take the Dasatanib with or without food, and no having to have a pint of water is so much better and I do not think I have missed one day.
  • General tiredness has gone

I have suffered from the occasional hot flush and burning sensation on my skin but besides that I have no other complaints.

Rob

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First night on Dasatanib

So yesterday I finally got my hands onto the new drug Dasatanib/Sprycel that should hopefully get at the mutating CML left in my body.

So i took it the same way I did the Imatinib (although not specifically because that is what you have to do) just before my evening meal with a big glass of water.  All was fine really until about 2 am when I started to feel very ill:

  • First off was the nausea which got worse and worse and a trip to the bathroom was needed.  Although in the end nothing came up.
  • Whilst waiting to be sick I started to get cold sweats and ended up just lying on the bathroom floor until the episode passed.
  • From then until about 6 am I was wracked with a feverish shivering every few minutes.  Eventually exhaustion took over and I fell into an on off sleep.
  • I also experienced loads of muscle and bone pains, especially in my knees and ankles.
  • Throbbing head, not a headache but like when your nassal passagways are blocked and there is a pressure build up.

After taking some ibuprofen and many cups of sweet tea today, as well as a trip back to bed I feel much better.  Most of the pain is gone but the dull ache in my head is not.

If I hadn’t just taken some new drugs |I would have sworn I had flu or something as that what it felt like.  Anyway I will take the tablets again tonight and hope for a more comfortable sleep.

Also found out that my PCR for my December trip was 0.045 which is the lowest it has ever been

Rob

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2011 New Year Update

Well it has been a good 6 months since my last update to this blog and so much has happened in that time, including a move to a new blogging engine and url as Windows Live Spaces was being shut down.

So we should start with the good news first.  Back in September I became a father for the 2nd time as Noah Samuel Margel was born on the 16th September. After the initial diagnosis and advice not to try for more children whilst on Gleevec/imatinib we had thought our opportunity or more children was over.  This advice changed a couple of years back and with my good progression on the drugs we decided  to give it a try and we are absolutely over the moon to be proud parents again. Below are some pictures from the first 3 months.

Some recent pictures

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So things where going even better when shortly after in the beginning of October I received news from the hospital that my CML counts had gone down to there lowest ever of 0.047  so after 3.5 years i had finally hit what is called MMR (Major Molecular Response).  In layman’s terms this means that I had a 1000 fold reduction in the leukaemia cells in my blood, which is a good thing and a real milestone as I had hovered around that number for a couple of years. (http://www.cmlsupport.org.uk/faq_pcrresults).

It then came as a bit of a shock when a month later I received a call from the Hammersmith Hospital to say that they where concerned with the counts they had took from my October visit as they had gone up by quite a lot to 0.125 so they wanted me to come in for more tests.

Whilst there the doctors also informed me that they had also found a mutation in the leukaemia in my blood that was the cause of the increase.  This mutation is one that is resistant to the current drugs I am taking.  So that was an even bigger shock especially as a couple of months prior I was celebrating the MMR.  Anyway we discussed the various options:

  • Possible increase in my daily dose from 400mg to 600mg a day to see if the increase will keep it at bay
  • Move to one of 2 alternative drugs Nilotinib or Dasatanib and the pluses and minuses of each.

The 2nd option of moving to a different drug is down to my local PCT (Primary Care Trust) in Reading who give me the drugs.  So I left it with the doctors at both hospitals to sort out what is available.  If they will fund the change of drug I will hopefully move to Dastanib soon if not I guess I will have to try the increased dosage to see if that has an effect. 

I am going back to the Hammersmith for more additional blood tests in mid Jan so hopefully it will be resolved by then as I have not heard anything as yet.

One thing about moving to the new drugs is that they do not recommend to father children on them yet as there is no evidence one way or another as to any implications.  So it looks we have been fortunate to have this window where we have been able to have a healthy child whilst on Gleevec.

Rob

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Chronic myeloid leukemia: New lab test could identify imatinib resistance

Sorry not much posting on here recently but this article is interesting…

Scientists in Japan may have developed a way to accurately predict those patients who will resist treatment with imatinib, which is the standard of care for chronic myeloid leukemia (CML).”

"Using this test, we are now able to identify and predict the most suitable treatment option for individual chronic myeloid leukemia patients," said Ohba. "This technique is both sensitive and practical to use; it is especially useful for patients who are in relapse, a case in which the clinician’s important decision regarding the next step in treatment must be made quickly and accurately

Chronic myeloid leukemia: New lab test could identify imatinib resistance

I will try and get a personal update out soon

Rob

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NICE: Be NICE to Cancer Patients – Please sign the petition

So one day Glivec may stop workign for me (hopefully not) but for my sake and the other CML sufferes in the UK who are/may become intolerant of Glevic please sign the petition Online petition – NICE: Be NICE to Cancer Patients

“The Chronic Myeloid Leukaemia (CML) Support Group have grave concerns about the provisional recommendation contained in the Appraisal Consultation Document of dasatinib and nilotinib for ‘imatinib intolerant’ Chronic Myeloid Leukaemia.

We question the wisdom behind the appraisal committee’s decision to separate the two sub-groups of patients because we understand that it is difficult to separate ‘intolerance’ from ‘resistance’ with clinical precision. We also point out that in actual clinical practice, both categories of patients who have failed to respond to Glivec, already enjoy increased progression free survival and quality of life benefits from therapy with Tasigna and/or Sprycel within the UK and throughout Europe. Separating the two sub-sets of patients in order to assess the Glivec intolerant group in isolation is, in our view, not only cynical but absurd and unethical.

Should the appraisal committee’s recommendations be upheld, patients with chronic or accelerated phase CML who prove to be intolerant to Glivec, will be offered other treatment options from a list of far less effective therapies used prior to the introduction of Glivec. Several of these options can in themselves be life threatening, most have well documented seriously debilitating side effects and one is purely palliative. With the exception of stem cell transplantation, which has relatively high morbidity and mortality rates, and for which is inappropriate for the majority, in almost all cases of CML the alternative options suggested by the committee, do nothing to halt the progression of the disease and for this reason alone are rarely used in current clinical practice.”

Rob

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