Hello
I have just been diagnosed with CML and my first appointment with a specialist is Friday 2nd March, along with my daughter we have been very busy on research and I am a little anxious about what to expect, what lies in the future for me, will I be able to balance my condition with my job, so many things running through my mind.
Just asking if anybody has any advice for me and what I might expect on Friday. Many thanks in anticipation
Lesley Margetts
Hi! First of all, i'm sorry about your diagnosis but i have to say that there's hope! You must expect that your doctor is going to tell you that you have a well controlled leukemia and you should expect to live a normal lifespan if you take your meds everyday. There are some questions that you should ask for your doctor:
1 - The phase of CML you've been diagnosed (chronic, accelerated or blast) and why you were diagnosed in that phase.
2 - what's the treatment for this phase
3 - why did the doctor choose this treatment
4- how should i take my medication (with or without food, the best time, etc.)
5 - the commons side effects of the medication
6 - when to worry about side effects
7 - what's the treatment plan, the test you have to do, frequency, etc.
Good luck. we are here to support you.
Hi Lesley:
You will get a lot of support here. We have all been through and are all going through what you are and will be experiencing. Ask a lot of questions to us and to your medical team. This is not a death sentence. To the contrary, it is very controllable. This first big decision is what TKI to start on - Gleevec, Tasigna or Sprycell. They all have different side effects profiles, so be sure to discuss these in detail with your doc. You can also read about each drug's prescribing information on-line. These drugs are expensive except there is now a generic form of Gleevec, but they generally work as advertised. You should be able to work, although some find it difficult at first as they get used to the TKI.
Good luck and stay close to us throughout the process.
Hi Lesley. Very sorry about the shock of the diagnosis but my husband is into his fourth month and is does get better. The first few days/weeks can be extremely overwhelming but we know so much more now. Always write down all your questions and do not leave without getting them answered; having someone taking notes is really the best (that is what I have done for my husband). You will begin on one of the inhibitors (TKI) and everyone reacts differently to them. Some do not have any side effects but it seems to me most do in varieties of ways. They WILL work and if the first one doesn't, there are others. Every three months there is the BCR-ABL1 test that they do so you know if you are responding or not which is a wonderful thing to have. Keep positive, you WILL get through it
The fatigue was bad the first 3 months because your body is busy dumping all the useless whiteblood cells. He gradually picked up, though not anywhere near normal yet. Thankfully he runs a computer business from home and has been able to work about 4-5 hours a day actually at the desk and the rest he does from bed with a phone and a laptop. He used to nap constantly but he doesn't do that anymore.
It is great you have your daughter to look things up with. Gradually you will wrap your head around everything, you have time so try not to stress too much. I am trying to remember back to the first days and appointments. We always had a list of questions which someone always took the time to go over with us. We are based in the UK (Glasgow) and the care has been outstanding. Trust your team. Take your meds and never, ever skip them and drink loads and loads, it really helps. We are both eating healthier, drinking lots of good juice and water.
We have found tremendous support on this site and depending where you are your can find local help or facebook CML support as well. I remind my husband every day that we will get through this, we will find our 'new normal' and things will get better. We have had to sideline some things for now to picked up later again. You will be OK, there is help.
Take care. Michelle
Thank you, one of my many concerns is my job, I drive to and from work, leave about 7am to get home approx 6pm, It is quite a stressful job very demanding managing a contract and team of 12. I am discussing options, there may be an option on the table to convert to working from home, I am beginning to think this may be a good option for me, reduce my hours and my stress levels, allow me to come to terms with everything.
My other concern, I work hard, to allow me to go on holiday, at present I have four booked, three of which are abroad, I can appreciate we all may react differently to medication, not knowing how this might affect me makes me anxious
You have reached a great forum for insight and advice. What I can share with you is that, depending on your current health (was the diagnosis from routine blood work or were you feeling ill), you can continue to do what you have been doing the way you have been doing it with little interruption. CML is very treatable; it is no longer fatal for very many people and the odds of you "responding" to treatment is very high. Getting your mind around that does take time, but you will get there.
Others here have posted very sound suggestions. One suggestion I would add is for you to download and read the NCCN guidelines on CML treatment. It has a great deal of information that will likely answer many of your questions. Read through this before your next doctors visit:
https://www.nccn.org/patients/guidelines/cml/files/assets/common/downloa...
Make a list of questions you would like to ask your doctor and then feel free to share your doctor's answers with people here on the forum. Your treatment plan will depend on many factors, but mostly what your doctor feels comfortable prescribing. Personally, I find the knowledge and advice on this forum to be much more up to date than what a non-research oncologist is likely to know. You will learn a lot more from this forum.
You should not need to make any changes to your travel plans or otherwise change your life much if at all. Once your CML is under control, like many of us, you won't even realize you have it. Only taking the drug will remind you.
All the best,
Michael aka Scuba
Many thanks for your response, very helpful.
My diagnosis has come from my diabetes 2 routine blood test, early December 2017 first test came back with increased level of white blood cells, I was advised this may be due to an infection, test again in 3 weeks, the results came back, increased white blood cells and abnormal cells, had another test 2weeks after this, gene identified, CML diagnosis confirmed, I have had no symptoms or illness. It has all hit me like a brick to be honest, not sure what to do for the best.
Lesley, welcome to this forum. You have already been given excellent advice but you might want to (or help your daughter) do a little more research you could read our qPCR Booklet A Primer for Patients.... it starts with an introduction and background to CML, what it is, the various blood tests and outlines the kinds of treatments you should be expected to be offered. You can download the booklet online or if you would prefer a hard copy you can send a request to cmlsupportgroup@gmail.com with your postal address.
Generally I would not suggest this as necessary to read at your stage as you have only just been diagnosed and obviously have suffered a terrible shock, but your daughter may find it helpful to read it. The booklet may be difficult reading at first but as you/she become used to the 'jargon' and acronyms etc. you will learn very quickly - as most of us on this forum have done over the years.
As you are based in the UK, it is more than likely that you will be offered one or other of the various brands of generic imatinib - the 1st generation of this class of oral therapies called TKis (Tyrosine Kinase Inhibitors). The original branded name of imatinib was Glivec, as developed by Novartis in the late 90's- this and was the drug that revolutionised the treatment of chronic phase CML and became widely available back in the early 2000s. Since then other TKIs have been developed - these are called 2nd generation TKIs- you can find detailed information about each one here: Available Treatments
As I said above you will probably be offered one of the generic imatinib brands -which one will depend on which region in the UK you are based. No matter, the active ingredient is imatinib mesylate which will target the abnormal white cell and shut down the signal for it to divide and replicate itself. But maybe all this information is for later after you have seen your clinician and know which treatment he/she advises in your case.
Hopefully you can take someone with you to your first consultation.... often it is best to have another pair of ears as it is quite an emotional time and often we miss what the clinician has said and/or forget to ask those crucial questions that we meant to.
I have one question at this stage: Where are you being treated?
Do not hesitate to ask questions of us on this forum. Between us, we have experienced most of the therapeutic options that are out there.
Sandy
I hear where you are coming from Lesley. It is wise to have options on the table if you need to resort to them. You may have very little or no side effect; never hurts to hope for the best! But, in case the first few months are not what you expected, it is good to have a possibility worked out. It won't be forever but you might need to slow down a bit and that is not a bad thing.
If you look at the threads for travel insurance there has been stuff posted recently. Again, you might feel fine to go, make sure you get your specialist to advise you. When you start the meds, you should find out in a month or two how you are tolerating it. Others can help you on this one about timing and when symptoms hit. Our specialist advised us not to travel for a few months because my husbands bloodwork dropped and he picked up infections easily and would have to go into hospital for a week at a time. It is so individual, yet also good to be prepared. The more we read of everyones stories, we glean more understanding so things do not take us by surprise.
All the best,
Michelle
Hi Lesley
welcome to this forum. My husband was diagnosed at the end of Sept. He has been on Sprycel ( dasatinib) ever since. The first month to six weeks was very emotional. I think although he had been ill probably for the last 6 months, the initial diagnosis caused him to feel much worse. He was actually feeling terrible because of a bad gout attack ( which was how we found he had CML). He has a very demanding job ( he just started 7 months before) and a long commute and living in the US health insurance is tied to his job. He had one week at home mainly because of the gout and fatigue but went back to work the following week and has commuted for 4 days and worked from home Fridays ever since. I don’t know if that is an option for you but knowing he only had to go in 4 days helped a lot.luckily he can take the train. He eats very healthily too.
The dasatinib kicked in very fast for him and his WBC was within normal range within a month. Psychologically knowing the dasatinib was working helped a lot. He found he was able to manage the side effects by drinking large amounts of water and recently he takes Curcumin. That has helped with inflammation eyes round his eyes and improved his coloring. Until his red blood cells started to return to normal range which took about two months or so, he felt extremely tired and some nights he would come home from work, eat and go straight to bed. He has ocasional days now when he is very tired and he will immediately take it easy. He definitely feels colder more often so we got him some smart but very warm fleeces . But overall he has way more energy than he had pre diagnosis. He is mountain biking with our son, he went camping in the wild last weekend in the snow and we have booked a trip to Spain this summer. He hasn’t told many people other than his immediate manager and family and a few friends about the CML. He is just getting on with his normal life now.
I really recommend taking your daughter to all your appointments. I think I drove his oncologist mad at first with my questions but because I know more now thanks to this forum and the LLS site , I think we have a really good partnership now. He has been very honest about how many diseases he has to treat and so he has welcomed the research I have brought him regarding CML. he only has a few patients with CML as is the case with most doctors probably so I think it’s particularly important to be informed. I will come here to ask questions before an appointment, after getting blood tests results and for advice on side effects and then I can discuss these with his doctor. We now get results emailed to us before we meet with the doctor so I can do my research and prepare my questions. My husband doesn’t want to dwell on CML so it’s worked well for us that I do the research and ask the questions and he can just focus on everything non CML related.
Wishing you all the best, Louise
