Just today diagnosed with CML, i’m 37 with a young family etc and just a bit lost really. My Doctor is very confident that it is in the chronic phase and TKI’s will work but have a bone marrow test booked for next week to confirm.
With it being so close to Christmas I’m guessing I wont have any confirmation and probably no treatment until the new year. I guess I am looking for any things that have worked for people to distract or comfort themselves whilst they wait out results just so I can try and have the best Christmas possible without feeling like I need to put on a brave face all the time?
Hi Andy hope you’re ok, please try not to worry, I too have CML and like yourself I am lucky to have been diagnosed at this early stage. I was diagnosed on 28/11/16 just before Xmas and had a bone marrow biopsy done a week later then started on Nilotinib Xmas Eve, I was also very anxious and worried all over Xmas… my appointments are now 3 monthly, I forget that I actually have CML and honestly doing absolutely fine.
I hope this has helped you in some way and put your mind at ease, please do not hesitate anytime to ask any questions
Thanks Chris
I am so, so glad that you found us so quickly, you must be in complete shock @AndyP
I was diagnosed with another chronic blood cancer on 16 Dec 2003 and I am still here and enjoying life, so it is what is called my cancerversary tomorrow.
It is my day and I have planned nice things.
I still get anxious before and during blood tests, other tests, results and appointments. I have been a very lucky girl and I have always been on ‘watch and wait’ (active monitoring).
Yes, you are right you are likely to be left in limbo over the next month, but you could look at it in another way that if your condition did warrant urgent treatment then that would have happened immediately.
I remember feeling in a bubble with the festivities going on around me after my diagnosis.
There is a lot of reliable information on the Blood Cancer UK website and their support line is there for you.
Here is a link for some well being hints Blood cancer: mind and emotions | Blood Cancer UK
I think that probably all your mixture of thoughts and emotions are absolutely completely normal, there are no rights or wrongs.
I find music diverts my mind, i like reading and I really believe in benefits of fresh air and reasonable exercise, I am a great walker and very nosey.
You say that you have a young family and with the festivities they are both really good diversions.
Perhaps write down every fear and all questions and practicalities you have for your next appointment so you feel organised.
The other thing is you are now part of our forum family too, we will be about over the festivities.
Just be ever so kind to yourself and please keep posting.
Happy Cancerversary for tomorrow, Erica! 19 years sounds great to me! Will you be doing anything nice to celebrate?
It’s always inspiring to read of others who’ve been walking this journey for a long time and demonstrate so much positivity.
I hope @AndyP despite this recent shock you can try and have a good Christmas and be kind to yourself too, when you don’t feel like having a brave face. The waiting is definitely the hardest part of the cancer journey, I find, whereas once you have a treatment plan you can put it more to the back of your mind and get on with things, like @Chris4pace. I do agre it’s rubbish timing but hope the New Year will bring you hopeful news.
Hi @Coastgirl thanks for tomorrows wishes.
I am going out early for a bracing walk and to collect a couple of things from Sainsburys/ Argos.
Then a Zoom meeting where I need to look festive (or silly) and have a drink (hot chocolate) and (the best part) a plate to festive foods. The flat looks like Santa’s Grotty already.
I always get very reflective and suffer from ‘survivors guilt’, I like to spend some quiet Me time thinking about my experiences and friends that I have lost along the way.
We are going to have a special dinner as well although it will be lost on my hubby as he has his head in the sand.
I am a very lucky girl and a gratitude list will be in order.
Thanks for all the help everyone, its good to hear other perspectives other than ‘OMG I have leukaemia’ which was all I really thought about yesterday.
I hadn’t though of it like this and it does put my mind at rest a bit. its good to hear you are all doing well and thank you so much for taking the time to reply everyone.
Happy Cancerversary @Erica ,
What an inspiration you are! I’ve only recently joined this forum as you know, but wanted to say thankyou to you on this important day for you. You are always there with kind words for everyone.
I hope you and your family have a lovely day and a wonderful Christmas.
Hugs, Alex
Hi Andy P. I’m a year in from my diagnosis for Polycythaemia vera (PV) which took a while. My advice is not to google anything as you only get the darknside which is very rare. This place and Health Unlooked MPN Voice are good places for information and advice. The main thing Ive learned is to carry on and take the time to look after yourself.
I was diagnosed with CML in July ( I am 39 ). It was a really big shock but I have managed to deal with it as something new in my daily rutine ( take one pill a day ) and do my best to live like I have before the diagnosis.
Talking to my hematologist helped alot and he said this won’t shorten my life, I will just have to get use to doing regular check up’s and take the pill.
Also, I agree with what one of these beautiful peope said earlier - if the doctor thought it was urgent, he would rush thing much more.
I believe you will be just fine and everything will end up being the best way it can be.
It is hard to accept you suddenly have this kind of diagnosis, but people live a long and normal life with this, women have children, beautiful future and the main thing is to know this and keep it in mind, stay away from google and just listen to your doctor.
@rina@DougyW thanks for taking the time to reply, really helpful advice.
I have spoken to friends over the weekend which has helped a lot although it wasn’t nice upsetting people this close to Christmas.
One question I have is if anyone knows what the hip bone marrow biopsy is like? I have it on Wednesday and everything just says it might be uncomfortable. Having been told it might be uncomfortable before for other things I know this can range from a bit of a funny feeling through to ‘that really hurts’
I felt pushing and pulling but no pain or real discomfort. They use a local and give it time to work. I could have driven after but my wife took me so drove back
The results take a while to get back expecially some of the more specialised tests so be paitent. Do you have the NHS App set up. You can see test results on there if you enable it. I find that useful.
Hello @AndyP. I am so glad you have found us on this forum. I hope you will find it a safe and supportive place to gain advice and feel less alone. I have a different blood cancer to you, namely myelofibrosis, which I have had for many years. Consequently I have had numerous bone marrow biopsies taken from the pelvic area. I won’t pretend they are painless and I think in my case they might have been a bit harder for the doctor to obtain the sample because the nature of my condition means that my bone marrow is fibrotic. Hopefully this won’t be the case for you. I have always had local anaesthetic and don’t be afraid to ask for more local anaesthetic at any point. I have survived all of them! I was offered gas and air for the most recent one so that is an extra option if you felt you needed it. The doctors have always been very kind and the whole thing doesn’t take very long. Hope this helps. Thinking of you very much. Warm wishes. Willow X
I was diagnosed in April 2003 so nearly coming up for 20 years with CML. I have had a few bone marrow biopsy and i never like them. On the plus side the anticipation is always worse than the actual process. It is very quick and with me it did leave me feeling bruised for a few days. Over the counter pain relief is all i needed though. Some people have no problem at all and lets hope you are one of them.
Wishing you all the best and hopefully a lovely Christmas. x
Hi Andy,
I am so sorry for your upset but really pleased that you have been diagnosed before it progressed more.
I was diagnosed with CML three days before Christmas (seven years ago). I went to hospital with suspected appendicitis ( which was really a lymph gland in my belly blocked with too many white cells). The white cell scores were higher than yours - I was in the blast phase. The head haematologist phoned the guy at St Thomas in London and he agreed to get someone to test because the lab which dealt with bone marrow testing was closed for Christmas. The did the bone marrow extraction at 5.00am and a guy on a motorbike wizzed it up to St Thomas lab and my guy had the result by 9.30am. I suspect I was very lucky with this situation but they could see my scores going up from the 12 noon test to the 6.00pm test. The blast stage can move quickly.
As for the bone marrow extraction it was funny rather than painful. The first consultant was lovely and she numbed me up a treat. Obviously bone is not numbed by local anaesthetic but the flesh is. You lie on your belly and have a pillow under you. I could feel the push but no discomfort at all. They collect one scoop of bone marrow jelly and one sample of the liquid around it. When it came to the next one I could tell by her grunts and sighing that she was having trouble. She apologised and said she would have to get some help. Enter a lovely gentleman, the smartest doctor I have ever seen in a crisp white shirt, just come on duty. He took over for the next two samples. I could then hear lots of sighing and grunting as he tried. They kept apologising and I kept saying I was fine! Eventually he collected the two samples from two different sites. By this time he was a sweaty wreck and they said I had extremely hard bones. ( Good for me to hear.) He said “ What do you do?” I said I am just retired. He said “How do you spend your days?” I said Grandchildren, swimming and golf. “Golf! That is what has made your bones so strong!” I thanked them and I think he left to find a cool cloth to wipe down. He was so hot and sweaty and his crisp white shirt was not so crisp!
I was left in the bed awaiting the results. It was so swift after that, the head haematologist came to see me with about six trainee doctors and the two who had taken my marrow and the matron and another nurse. It was barrier nursing and so each of these washed their hands on the way into the room and I waited. He told me they would start me on chemo that morning. That I had blast phase CML but a decision had been made to start me as if I had the chronic stage because I was fit and younger (61) and reassess every visit and I would initially be seen every two or three days until they could see how my scores were. I was pretty upset- about how I would tell my husband mostly. A consultant ( the one who had started the bone marrow extraction) mouthed “I will come back.” She did as soon as she could and talked me through my anxiety about telling my husband. She said she could do it for me and went off to get the MacMillan booklets on CML.
Over the next couple of weeks I was a bit uncomfortable with the scabs on my hip which tended to catch on underwear. That was more annoying than the marrow extractions.
I did later make a gentle complaint about being told my diagnosis in front of a room of twelve people and said I wished I had been treated with a bit more sensitivity and told initially by one person. They could then bring all twelve in because I am in favour of trainee doctors having full access.
I fully understand your anxiety of the bone marrow thing but in my experience it is managed well with pain management and everything is explained so clearly. You will have a dressing over it but it can bleed a bit so get someone to check it does not spring a leak.
The lucky thing for you is that in those seven years things have moved on so that it is likely that you will never have it again because blood tests have been developed which take the place of the annual bone marrow test which was used then.
I would say to you that the initial chemo can be quite wicked and within a day I was feeling pretty depleted. Plan to be able to withdraw to bed or a couch. If you go to other people’s houses for Christmas ask if they can have a bedroom where you can go to have a snooze. It will all get better once you are on the tki but initially the medications will knock back your white cells ( both good and mutant) and that makes you tired and sometimes a bit chilly too.
Everyone is different and I was not feeling ill or tired before diagnosis despite it being advanced but some people feel poorly with low level scores. Your consultant is right to be confident of the treatment. I was reassuring my friends that it was a rare cancer but I was lucky to get a good one which had been treatable for decades. Also since then the tki which I am on (Imatinib) has been made a generic drug which means it is not made by one company only but that other companies have the recipe and can make it. This makes it so much less expensive than it was.
The pharmacist who originally gave it to me and old me that each tablet was like ordering a double gin and tonic in the most expensive London bar and that because I was the only patient taking it, he could only order it as I needed it and could not keep it in stock, until he had my prescription sent to him. That has changed.
( Reading this back I expect you are wondering why I had three samples taken?? I was told one would be frozen and kept at my regional hospital, one sent to a London Hospital for diagnosis and measurement and one sent to a commercial lab in Surrey for confirmation.)
I hope this has reassured you and maybe given you a chuckle or two. You will do very well I feel sure. It took me three years to get my scores to a low level but I was feeling quite well for two years of that time. You will need to be careful of catching infections because they can be so annoying in that they can take ages to clear. You may be poorly for three times longer than the person ( mostly child ) who gave it to you so worth avoiding.
Do phone MacMillan and get their booklet on CML. They will send you multiple copies. My children and close friend found it very helpful. It saved me talking and explaining too.
Remember you are lucky you got one of the best blood cancers!!
Also you have found this forum early and we are very friendly and you can offload to us when you do not wish to bring your family down and make them worried.
Big love and Christmas good wishes to you.
Grandma Jo
19 years sounds great to me! Will you be doing anything nice to celebrate?
