Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
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Hello. Im Mum to an adult daughter with CML. I wondered if there is anyone out there in a similar situation?
Hi - yes after a nightmare of a journey my 19 year old son was diagnosed with CML last week. As parents we are still stunned, upset and obviously worried. How is your daughter coping and how are you coping as a family? I find it hard because my son is a teenager and this disease seems to effect older people so I'm finding it hard to find info aimed specifically for teenagers.
He has his first appointment at our local hospitals haematology department on Wednesday - it's all so new to us and scary. My son in himself is taking it in his stride but I'm not sure if that's not to worry us. He is on intanamib (I know I've spelt that wrong) but I'm currently typing this on an iPad under the duvet so as not too wake my husband at 6am so unable to check spelling of drug!! Our son seems to be coping with this but is really tired. That said his body went through a lot last week after being admitted with a white blood cell count of 500 to the Christie's in Manchester.
As parents we feel a bit lost and worried as to what lies ahead for our son so any info on encouraging and helping him out would be appreciated.
Hi. I am new to the forum and I am crying out for advice and reassurance.
My 22 year old son has just been diagnosed with Cml a few days ago. And again like others he had a white count of 500 and the hospital have manage to drop it to 180. Due to Nilotinib. We have moved him back home so we can look after him and make sure he is looking after himself. But this meant a change of hospitals. Although we have moved him back home we feel we have nt got the support network and still have No contacts at our local hospital. Don t know when his next blood tests are. Nothing. We are really fretting.!!!
We found out he had cml when he rushed him self into A&E with a badly swollen penis which was causing him chronic pain. The hospital drained 2 litres of blood and clots out of his penis which has left side effects and a operation to be had. So on top of this diagnose he also has damage with his penis.
Yesterday we moved him home. Within an hour a blood blister under his foreskin burst whilst he was in the bath and all hell was let loose. My bathroom looked like a massacre. We called 999 when throu a 10 min questionnaire we also explained his condition etc to then be told its not an emergency. blood was pumping out of his penis we could nt mop it up quickness he was already anaemic before he left the hospital and to be told he was not an emergency was a kick in the teeth.
Anyway, we drove like looneys to the hospital with my son half naked and nappy around his genital to our A&E. He sat for 5 mins in the waiting room until I kicked up a fuss and told the nurses he was on the verge of fainting.
He was admitted to hospital over night and I thought great he will be given his consultants in haematology and urology and a plan will be set up.
Nope we got sent on our merry way with no advice or no form of contact for my son if we need help or advice in an emergency we just got told ring 999.
At this moment in time I feel as a parent scared, frightened for my son and worried something is going to go wrong or we will miss some vital signs and not get him to hospital in time.
We feel so let down by our local hospital or am I fretting to much and chill and the hospital will contact us in the near future requesting for blood tests.???
Any advice would be really appreciated.
Hi Ssh32290 and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your son.
I don't have CML but have lived with a rare type of Non Hodgkin's lymphoma for over 20 years. A cancer diagnosis can bring a lot of stress on a family and your head is a total whirlwind.
The change of hospital is unfortunate and often can create problems with handovers as referral can take time and then the wait to get onto the new Haematologists list.
The system needs to be pushed at times as once in the system things do move in a positive way.
You need to contact the team who first diagnosed his CML in the first hospital to check to see that the referral HAS been made and look to get some contact numbers for the new hospital department.
If in any doubt you keep contacting 999 and/or go straight to A&E. I would also make an emergency appointment with your/his GP, the more irons in the fire will bring results.
This CML Forum can be slow but there are a number who aways be around to help.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi Ssh32290. I have been on this forum but have not used it for years as i don't feel i can get answers quick enough. So sorry to hear of your problems and it is a terrible way to find out about your sons diagnosis but get straight on to your GP and the hospital he was first diagnosed and they will get things moving. I have had CML for almost 11 years first diagnosed 4-9-2008 and the reason i am on this site tonight is i have been on Nilotinib for almost 3 years as my first chemo was Imatinib that stopped working and it does for some random reason in some of us. Anyway to cut to the chase my response on Nilotinib has been so good for the past 9 month i have been in total malecular remission and they are thinking of stopping my treatment but i wanted to find out about any others on this site who might be in the same position. The reason i have left the message is to let you know that i have had some very dark days but i now feel i'm coming out of the other end and you need to stay positive keep on at the hospital, GP etc and keep the faith. Most people can live with it yes some better than others but i was 48 when diagnosed have seen my two boys through school and almost college and get to see my daughters and grandchildren grow up so it can get better. it is bloody hard and tough as anything at the start but when you get all his other problems sorted then you can work on the CML and remember it is a marathon not a sprint. Good luck and sorry for my writing english lit was never my strong point. KTF.
Hi Waxi2, yes, this area of the Community is slow due to the small amount of folks with CML. I put in Nilotinib into the search tool near the top and got a few hits, have a look and lets see if others are looking in and can help you out
We also have Caroline - Macmillan Heamatology Nurse - Volunteer Experts where you can ask questions, but please allow 2 working days to get a reply........but she may be on holiday at the moment.
All the best.
Many thanks Highlander i will check back in a couple of days.
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