You are here

Newbie on the Block

Categories:

I’ve  been recently diagnosed with CML - not exactly the 50th birthday present I was asking for!! I was thinking more along the lines of a new car or jewellery. It was a shock out the blue as I had explained all my symptoms away as just being tired and unfit. The day before I was diagnosed I had run in a five man relay 32 km straight up a mountain to 2000m elevation and won the gold medal so it totally didn’t make sense to me at all.

Within 24 hours of giving blood (for some eye surgery I wanted to have done) I was called by the GP to tell me my WBC was 137 and my platelet count was 781.   I was referred that same day to the local hospital starting hydroxyurea 100 mg pd and had a bone marrow biopsy 5 days later which confirmed moderate phase CML.....I’ve probably had it close to a year based on blood test results from August last year which showed WBC slightly above the high end of normal. After one week my WBC was down to 105 and a week after that down to 55 and my platelets down to 649 at which time they stoppped it.

i have read the forum posts on this site and realise I have been far too blasae about the whole diagnosis and treatment and the impact of following the treatment plan closely. I am now on  Nilotinib and allopurinal . The Nilotinib needs to be taken on an empty stomach. I am finding it difficult to work out a time 12 hours apart 2 hours after food so have been taking it within a few hours of the 12 hour slot but see many of your comments on the forum that this is a no no and you all seem to be very regimented with the time you take it.. How do you guys work it out for you? If you are invited out for dinner which impacts of your med taking how do you get around it? My husband brings  me a cup of coffee in the morning (milk no sugar) and I have been taking me meds with it. Is that ok or does that count as food?

Do any of you take supplements eg iron tablets for anaemia?

ive now been on the Nilotinib for  a week and have started getting sore joints specifically my knees and calves? I’ve also been getting a lot of uppper abdominal pain after taking the allopurinal. Is it usual to get symptoms this early or is it all in my head?

My energy is an all time low and I have spent a lot of time in bed after starting the  Nilotinib but I have also had a very bad bout of the flu so I am hoping this tiredness is not related to the meds. This is so not the person I normally am.

My last question relates to the Nilotinib. I read on the Phamplet that when starting it that it is recommended to have an ECG prior to treatment and another one 7 days later. My consultant did not recommend this and I am unsure whether to follow this up or not. Thoughts? Unfortunately I have very limited time with the medical professsionals as the waiting room is full of patients and if you don’t lock the door while you are seeing the specialist patients literally walk in constantly so I try to get my questions out as fast as possible.

So sorry for all the bombardment of questions but as you all started at the beginning at some stage you’re  the best people in my book to ask.

Hi Fiona

I am 38 and I was DX in March wbc 330, platelets 900 and an enourmous spleen (that and weight loss my only symptom) It’s certainly a shock getting the news. A day I’ll never forget for sure. Like you I was put on high dose Hydroxy and Allipurinoal for close to 3 weeks before my bloods return to normal-ish ranges. I was then started on Nilotinib and Allipurinol. You’ll be taking the Allipurinol for the 1st month and you will come off it and you’ll be on Nilotinib alone. You’ll be destroying lots of the Leukaemia cells in the early days and your body will be taxed and the Allipurinol prevents Gout hence why you take this.

Symptoms are normal you’ll notice more in the 1st few months and they should either disappear or lessen and maybe others will appear throughout time who knows. It can take months/years for some to show themselves but try not to worry. Easier said than done I understand.

Please take your tablets as suggested. I take mine religiously at 8am and 8pm which means I have breakfast after 9am and have my dinner before 6pm. It takes sometime to adjust but it’s my new normal. But and this is very important don’t eat if you can help it during your fasting period or drink calorific drinks. It can cause the effects and symptoms of Nilotinib to be very dangerous especially to do with the heart. And I never take them before the 12 hour slot that’s a big no no and defo a concern if you do this and are at risk of very serious issues. I have broken the fasting rule a couple of times at social events and not noticed too much of a difference but defo don’t make a habit of it. And defo don’t miss a dose those who miss more than 3 doses a month are more liking to not hit milestones and risk disease progression. The paranoia will end up eating you up so it’s just best you don’t do any of the above if you can help it. The only times it’s a struggle is eating/drinking out socially but luckily everyone knows the score now so most people will accommodate your schedule.

I had an ECG before I started the tabs and never had a follow up one. It’s been 7 months and the tablets have returned all my bloods to normal and my 6month PCR is showing at 0.7%. These tablets are truely amazing and will surely for you obliterate the CML and keep it at none problematic levels. My symptoms have been skin pimples in various places, sensitive skin especially during the colder months, some hair thining on my head but very mild. Some hair lose of the pubic variety. Flactuence is another. In the beginning very soar scalp and itchy head. That went after about a week. I also noticed slightly reder eyes but that also went. Some various bone, muscle joint issues that mostly have been minor and not lasted for long.

Try not to freak out it’s a scary time but it does get easier with time. Take heart at knowing 90% of us will live full and normal life spans. Can’t wish for a better outcome really. We are very lucky to have these meds and if you get a good prologoned response one day you may be able to cease medication altogether. This doesn’t mean CML is gone but the body relearns some of its normal function and the levels may never return to those naughty levels ever again but you’ll be closely monitored. If that’s not possible for you one day you’ll likely have a dose reduction and most symptoms will no longer exist or be a problem. At your stage the most important thing is to respond to treatment which I am sure you will. And if Nilotinib is not the drug for you we have another 5 or so to try :-)

All the best with your treatment.

Alex

Hi Fiona,

So sorry you have to join us as truthfully none of us would choose to be here, however the site is a great source of knowledge and support even if you just browse the comments.

I’m still a relative newbie as I was diagnosed in June with my major symptom being severe anaemia. I was amazed because I didn’t actually feel particularly unwell, and like you I had put all my individual symptoms down to other reasons. It’s only after treatment started and I began to realise just how ill I had been because I was starting to feel better! That’s the problem with a chronic illness, you get used to it because it comes on slowly and it becomes your normal. I presented with a WBC count of 180 and an enlarged spleen and I was put on imatinib straight away which had an immediate effect on my blood count. Side effects started with a bit of nausea, evolved into bone and joint pain and then disappeared completely. Latterly random bouts of fatigue started.

Nilotinib is seen as a more effective drug in general and subsequently I’ve been moved over to this drug as I’m proving resistant to imatinib. Physically I had no side effects at all from this new drug, however after nearly 4 weeks on it I’m having to take a weeks break as my platelets have dropped to a concerningly low level. What I’m getting at with my story is that everyone seems to react slightly differently to everyone else and it’s about finding what works for you. It’s important to keep monitoring your blood results and listening to your consultant. My consultant said there is a lot of evidence that starting on Nilotinib is better than imatinib.

I’ve not had an ECG, no bone marrow biopsy and everything had been monitored via Complete Blood Counts and PCR testing looking at the BCR-ABL results as a percentage and becomes very important after your blood count becomes normal.

My preference for taking Nilotinib was 5am/5pm which did mean setting an alarm and waking up briefly in the night. For me it worked and for others it wouldn’t. I’m in my mid thirties and with my personal circumstances and social life this works great although I’m lucky I generally don’t have trouble getting back to sleep after the 5am alarm. The morning trade off means I can live a normal evening as I can eat and drink again from 6pm. As for what you can drink during the fasting period, there isn’t anything in the notes with the drugs however from this site I’ve come to the conclusion anything without significant calorific content is ok. I actually try to just stick to water.

I hope my brief journey has helped you. This site has certainly helped me.

Thank you Alex and David. I am so glad I have found this site and feel I’m not the only one out there feeling confused and a bit overwhelmed at all the info and do’s and donts. I live in Oman so it’s a big labirynth to get through. Being the one and only European in the oncology dept is a novelty but obviously I can’t converse with any of the other patients given the language and cultural barriers........very entertaining though.

So....I guess now I just have to make some lifestyle changes relating to meal times and be a lot more stringent about the meds rather than a ‘She’ll be Right’ attitude

One last question relating to exercise....when did you guys start exercising again after being diagnosed....I mean running or strenuous aerobic exercise? One dr told me not to and to take it easy with another dr telling me to carry on an normal (Not that I feel I can at this stage.....struggling to even get up the stairs with SOB) I’m just getting so out of shape and need to stay motivated.

 

Hi Fiona

No problem at all. It wasn’t long ago I started my journey like you. Because I had a large spleen at DX I wasn’t allowed to exercise but as soon as that returned to normal (around a month) and until I had my 3 month appointment because I wanted my body to become accustomed to all the changes I started running and lifting weights again. Your body is going through a lot at the moment so give it a chance or I should say the best chance. Get lots of rest oh and very important drink plenty of water daily this helps your kidneys and also the symptoms of taking the tablets. You’ll go to the toilet a lot but it’s a small trade off.

Youll be absolutely fine. It’s as much a mental battle and if it didn’t have the dreaded C word attached to it it would be easy to take. Give your mind also the chance to digest and as soon as you start responding you’ll get a bit of you back at  each result. The early days I’d say are the hardest but it does all get better quite quickly.

All the best

Alex

Ditto what Alex and David said.  I was Dx in SEP 2016 ans started on 300 mg Tasigna 2x/day.  Had a few unusual side effects and lots of the more typical ones.  I was lucky to be a quick responder (MMR in less than 90 days) and <.003% in 6 months and still there as of last PCR in July.  I have been religious about the fasting rule and the 12 hour rule (I missed the latter once and my onc told me to go ahead and take the dose late as long as there was at least 8 hours between each dose).  It takes some getting used to, but you will find a schedule that works best for you.  Due to my fast response and the plethora of side effects, I went through 3 successive dose reductions (first to 450 then to 300 and then to 150) from months 6 - 12 of treatment.  I am still on 150 md/day x1, so I now adhere to the 24 hour rule and still to the fasting rule.  I never stopped working out. Even though I had barely enough energy many days, I forced myself to exercise.  I changed my diet to mostly whole foods and added magnesium taurate and Vitamin D3 supplements.  Today my side effects are very mild and transient.  Everyone said it would get better and it did - of course, the significant dose reduction has helped as well. Once you achieve MMR, you should consider having discussions with your onc about dose reduction.

Regarding the ECG, you should have had one before you started and a week later and then at 3 month intervals for a year then twice a year.  Tasigna can cause something called qtc prolongation which can predispose you to a potentially fatal ventricular arrhythmia known as torsades de pointes. It's not that common, but enough so that it is a black box warning on the Tasigna prescribing circular.  If your cardiovascular system is fit, you have little to worry about - so please go get that ECG.

Good luck and hang in there - it does get better.