CML

Hi Hannah. I'm so glad you posted your story. There is at least one more out there with a similar story. Me!
I'm 31 and fell pregnant last summer with my second child. I had a blood test at week 16 and told to contact the hospital as my platelet levels were high. They should be between 150-450 and mine were at 899. I was put in the care of my haematologist, who carefully watched my levels grow. When they reached 1500 we had to do something to prevent a blood clot. The 2 drugs to treat "thrombocythaemia" (which they thought I had at the time) was hydroxyurea(chemo) so not an option and interferon. So that was what i was put on. The platelet levels started to come down slowly. It must be said at this point by wbc was just a tad over normal 14-16 , not that unusual in pregnancy so this why CML was not spotted.
I'm a Christian and I know that the birth of Eleanor was a miracle and a gift promised to me. We prayed for a safe arrival and on the cold January morning she was induced, my levels went down to 650 and even 410 an hour after birth, with no other complications. That was it. Over we thought. So i was taken off the interferon and no need for Clexane(heparin). Just for completeness we asked for a blood test one week after. To my absolute shock, the platelet level had risen to 1600, with the wbc still at 16. This sent alarm bells ringing. My haematologist took another sample and this time tested it for Philadelphia chromosome and it came back positive. So that's it. I have CML.
That was the 28th February. Now it seems everything's changed. I know too this was something that was always going to happen to me, it's all part of God's plan. I take comfort in the timing that I was tested as result of the pregnancy, and not walking around in ignorance. He kept us both safe, and will continue to give me and my family strength to get through this. I have 2 wonderful daughters, who are a blessing to all who meet them. As for Eleanor, I was able to breastfeed her for at least 10 weeks . I had to stop as I knew i would be put on Glivec. Its been One week tomorrow, and no major side effects.

Sorry that this is an epic. But I guess I'm as surprised to find someone as yourself, as i guess you will be too.
Do try and reply on this link and if there is any question you want to ask, as someone who has come out the other side of giving birth with CML then do.

Carly

PS When are you due??

hi carly hope all is well with you.my name is Pauline i also have cml iwas diagnosed in january 2008,iwas put on a mild form of chemo at first then i was prescribed gleevec.All was well at the start of the treatment but in the last four weeks i have been having alot of problems with the side affects,mainly bad indigestion feeling sick and bloated but also a strong metalic taste in my throat, i wondered if you have since you last wrote if you have come across this problem,if so how have you dealt with it. Please keep in touch regards Pauline

Hi Pauline,

I'm just coming to the end of 4 weeks on glivec, although i must say it's difficult distinguishing any other side effects, since i was so under the weather with interferon. However, I can agree with you on the feelings of nausea. It started after week one. It's seems to come and go though, a bit like being pregnant all over again! My only tip is to graze food all day so that there's always something in my tummy rather than 3 square meals. Also I take it in the evening so that I sleep through most of the sickness. I recently had a follow-up meeting with a consultant at Hammersmith and discussed it with her. She confirmed that sickness is one of the major side effects, and she would be willing in the future to prescibe antisickness tablets if it got too bad. Maybe ask your doctor for some?

Glad to hear you are out there, and i hope that the sickness subsides soon (for both of us). Do keep in touch using this forum

Carly

Hello all

I got diagnosed with CML about 6 weeks ago at the age of 34. Fortunately I have regular blood tests so I had maybe only had it for about 6 months when I was diagnosed. I am on Glivec (and anti gout tablets!)had a few side effects - a bit of sickness (try munching on ginger biscuits - it does help) and bone/ muscle cramps which can get very very bad but seem to be coming under control now - does anyone else have the pleasure of these?
The last lot of tests I had were quite positive and my next hospital appointment is now a month away rather than 2 weeks so all looking good I guess.
I'd be interested to hear how others are coping

K

Dear Carly and Hannah,

Well I too developed problems with my platelet count during pregancy and was put on Interferon and clexane to manage the condition until I had my baby. I had my baby on December 29th and had to be rushed back in 9 days later as I haemorrhaged, developed severe anaemia and my platelet count went over 2000. I had a couple of blood transfusions a huge dose of antibiotis and was let out after a few days. In the New year I had blood tests and a bone marrow test. On the 24th of January I was diagnosed with CML. I too can't believe there are others out there with pretty much the same story as me. Although I wouldn't wish it on anyone its nice to know I am not the only one.
How are you both coping?
Take care
Becks x

Just when you feel optimistic with a new pregnancy, to have the race against time with CML seems very cruel.

Wonderful stuff Interferon.

Apparently the metallic tasts is reduced by using plastic crockery and cutlery.

I only found out about my cancer when I went to give blood, and my Haemoglobin was too low to give blood. Aren't we all so lucky to find out in time.

Good luck and best wishes

Ruth

Hi Carly,

Sorry its took me so long to get back x I gave birth to My son Joel on 11 March, Hes doing fine. I started Glivec the day after having him so didnt get chance to breastfeed. I been on Glivec since march I have not had to many side affects. I get a bit sickly now and again but thats about it. All my counts are back to normal x praise God.

How are you doing now?

Hi to all you CML sufferes and carers

I was diagnosed 15 months ago and treatment on Glivec started off fairly well. After about 8 months my blood counts dropped too far and things started going a bit wrong, I ended up being 76% ph positive. I had several stints of no drugs to try and get my counts back up and eventually about a month ago was put onto Dasatinib (Sprycel) instead. I am not yet on full dose but so far things going okay. I can only hope that I will be able to tolerate this drug or it will mean transplant.

Things have been a bit rough but I have found several websites to be of great assistance. The one I use most is CMLSupport.org.uk - this site is for CML only and there are people who have years of experience and can answer most questions that you have. There are even women with CML who have chosed to have a child. Another good website is leukaemiacare.org.uk

There is help and support out there, you don't have to go through this alone.

Take Care all and stay healthy

hi everyone just to introduce myself, i'm 27 year old diagnosed withCML february 2004, initially started glivec but had opted for tranplant and was in the process of getting egs frozen for if i wanted kids later, well to my utter surprise just 9 months after being diagnosed i received another shock diagosis, i was pregnant!!! luckily i had been off glivec for 3 months beforehand so the baby was not at any risk from the meds. I was put on inteferon through the pregnancy and started back on glivec a few days after dear daughter was born. However, had become immune to the glivec and began clinical trial Dasatanib with which i got a remission last july :D just over a year later and all is well, treatment continues effectively and i have also been told that if i want more kids in the future (which i definitely do !) that the doctors will make that happen!!
I have been very lucky but have never met anyone with CML before, stumbled across this forum by chance. I look forward to chatting with you all in the near future..

Hi fluffyducks

I am glad Dasatinib seems to be working for you I am also hopeful that it will be the one that works for me - much as I like the idea of a cure via transplant I can't say that I am looking forward to going down that route. You say at the start of your post you had opted for transplant, what happened?

Ya i ad opted for a transplant initially, however in retrospect i think it might have been an impulsive decission, although i did think about it intensely, i was still reeling from the diagnosis. However, God or somebody stepped in and decided it wasn't for me, i was in the process of preparing my eggs for harvest so i could have ivf after my transplant when i discovered i was pregnant. luckily in order to prepare my eggs for harvest, i had to be clear of glivec for 3 months to ensure no harmful effects to the foetus. it was a big shock to find out i was pregnant but the gods conspired to allow me a beautiful healthy daughter, now 3 years old and remission with my CML since july 07. Transplant is still an option but not unless i become immune to dasatinib..
fingers crossed

Hi Fluffyducks

I am really pleased things worked out and your daughter is healthy and well - good stories are always a welcome relief.

Do you have any problems with the Dasatinib? I am still not on full dose but my blood counts are falling too low and they are talking about putting me on G-CSF. I am currenlty on weekly appointments at Addenbrooke's in Cambridge and should get it confirmed next week as to whether the G-CSF will be necessary. I also find myself very tired all time but then I had the same problem with Imatinib. I have had to cut my work from 5 to 4 days as I can't manage the 5 days any more. How do you cope with a child around, you can't switch off for a day then?

Hi again tr...i have to say i'm not familiar with G-CSF, what exactly does it mean? I am on full dose 70mg twice daily and no side effects really. I am prone to facial oedema, especially swelling around the eyes and have periodically developed a waxy type of rash on my face, very ood! With Glivec, both times i started it i got unbearable cramps and stiffness in my joints so glad it doesn't happen with dasatanib!! I am in alway in Ireland and am very lucky to have on the the top CML researchers around as my consultant, he actually pioneered Glivec so i feel pretty safe in his care.
You poor thing, i remenber the exhaustion, its terrible my platlets tend to drop every now and then, i know myself when this happens as its the only time i feel tired. Maybe if they sort out your dosage you'll start to feel better??
Dear Daughter certainly doesn't allow me to feel tired :D she's full of beans. I'm finishin my final year of uni now so she's in creche while i'm in class, its great as i can leave her in for a few hours on my days off too so i can get a rest.
Just wondering how you feel about the option of transplant? do you have a donor??

Hiya

G-CSF is a growth factor that promotes the growth of white blood cells; it is self administered by injection a bit like insulin for diabetics.

70mg of Dasatinib twice a day is quite a high dose isn't it - I thought the standard dose was 100mg daily.

You seem lucky with your consultant - I ended up transferring from my local hospital to Addenbrooke's in Cambridge because they didn't have much idea about CML. My current Dr is excellent, he specialises in CML and has a great interest which is comforting.

As for transplant I have mixed feelings. When first diagnosed I felt it would be a great thing as it was the only option for cure. I still quite like the idea of it especially as I don't have that great a quality of life at the moment but it is a big step and there are still risks. My sister is a match so I can have one if necessary.

What are you studying at uni? If you feel like a private chat anytime my email is hcy0da@googlemail.com

Take Care

Helen

Hi Pauline,

I've only recently joined this site and just seen your comments about Gleevec. I've been on it for over 3 years and doing OK. I'd rather have the side effects than kark it!

I haven't had any sickness (there's nothing worse, is there?) but sometimes get the most awful leg cramps in the night - bad enough to make me hobble to the bathroom whimpering! (What a wimp!) The funny thing is, if I have a poo, the cramp goes off. It's a mystery to me but it happens. A hotty bottle seems to help, even in the summer.

I also get puffy eyes, particularly bad in the morning. Oh, and the runs! But nothing I can't live with.

I've just been on a year long vaccine trial alongside the Gleevec. Results not due until later on this year.

I hope you're doing OK. Let me know if they've changed your drug.

Best wishes, Shelagh

Dear Karena,

I've been on Glivec for over 3 years and doing OK. Currently I just tip up for a blood test every three months. I've also been on a vaccine trial but results not out yet.

Terrible muscle cramps in the night (in my legs and feet). Strangely, a poo sorts them out. Weird or what? The cramps seem to come in waves - maybe a week or two of suffering and then nothing for months. I also have sore and puffy eyes (especially first thing in the morning) and appear to have developed hay fever, for which I take antihistamines.

For the cramps, a hotty bottle helps.

I can't help noticing that people seem to be falling victim to CML younger than expected. You're supposed to get it in your late fifties. I wonder why? Pesticides? Radiation?

Hope you continue to do well on the Glivec. It seems to be excellent stuff if it suits you. Sod the side effects - better than pegging out!

Best wishes, Shelagh xx

Dear Trog,

I too have CML and have been doing well on Glivec for over 3 years. A transplant isn't an option for me as I'm 63. Apparently, we old farts don't do so well with transplants.

I've looked at the CML support site and it frightens the life out of me! Too much information for a person with a vivid imagination! Far too depressing. Not that I want to bury my head in the sand, but I can live without the details for now.

I'll have a look at the other site you mentioned.

Look after yourself and good luck

Best wishes, Shelagh

Hi trOg,
sorry ben so long getting back to ya!! Yes 70 mg bd is the highest dose on the trial, but it's working well and i'm tolerating it well too, luckily the only thing that reminds me i have cancer is having to take my meds every day. Getting the results of my latest biopsy now next monday (6th Oct), so hopefully they are still clear. you mentioned G-CSF, i assume its used to raise your white count after its lowered due to the meds? i had the same problem only with my platelets, they were continually low, but all stable noe thank God!!
I also have mixed feelings about the transplant, initially i jumped at the chance, but after i had my daughter i decided i just couldn't be out of action, or her life for the length of time it would take for it to happen. My poor brother is a match so he's on standby just in case :D
To answer your question about what i'm studying, i'm in final year arts, studying English and history, i'm really enjoying it after previously having studied nursing only to have to leave because i keep falling asleep in class (had cancer but didn't know!!)it's great to be back doing something for myself again. Hoping to use the degree to go on and become a secondary school teacher.. fingers crossed.
You mentioned you haven't been feeling well, how is that now?? Any improvement?
Hopefully you are keeping well..

Hi Shelagh

You're right about some of the information on those sites being a bit scary but the overriding feeling is a positive one. People are faced with many things as a result of this disease but with the help of others they are coming through it with flying colours.

The ones that do upset me a bit are when young children are diagnosed but once again the prognosis is very good.

At the end of the day nearly everyone I have ever talked to about cancers whether patient or carer have found a strength they never knew they had.

I hope you continue to thrive on Glivec.

Take Care

Hi Fluffyducks

Good luck with your biopsy results on Monday. I found out a little while ago that a health insurance scheme that we belong to pays you money if you have things like BMB's in outpatients; they are not the most pleasant things to have so if you can get something back it's a bonus.

It's a good job you are coping well with the treatment as the life of a secondary school teacher is not an easy one; perhaps you will end up teaching your daughter when she gets to that age and she can be all embarressed by having her mum as a teacher in school!

My neut blood count levelled out at 1.2 just above the 1.0 which would have meant the G-CSF however my platelets decided to fall below the magic 50 so they have taken me off the drugs as there is no treatment that will supliment the platelets. When they have recovered they are going to try me on just 50mg Dasatinib and see if I can tolerate it. Luckily by being off the drug I have started feeling better. I get really tired and cold but have more energy when I am off the drugs, still very cold though.

Take Care

Hi Trogs,

You're not kidding about the strength bit! They say that what doesn't kill you makes you strong. How true. I've been on both sides of the fence, nursed my husband through a long illness and thought that was my ration of hardship. Hah! How wrong can you be? But in a strange way, knowing you've got something ghastly lurking in the wings makes you enjoy life all the more.

Thanks for kind wishes.

Shelagh

It's me again - just read your message to Fluffy. I'm cold as well, even tho my blood is OK. We're going to Corfu next week and I'm taking joggers and a fleecy!

I'm not a great expert on the bits of the blood (although I do have a list of 'normal' counts copied into my diary. I have 2 diaries, a normal one and a hypochondriac's one.) Anyway, where was I? Oh yes, I believe exercise improves your platelet count. Can you manage some brisk walking or something? I could be wrong but it's worth a try. Ask the nurse, she might know.

Good luck and let's know how you're getting on.

Shelagh

Hi Shelagh

I hope you have a great holiday, I have never been to Corfu although I have done some of the other Greek Islands. Hopefully the weather won't be too bad, at least it should be warmer than here in good ole Blighty!

I know many people with the illness suffer with the cold, what none of us have been able to decide is whether it is the illness or a side effect of the drugs.

I do walk every day with my husband after work. On weekdays there is a circuit around the village that takes about 30 minutes - unfortunately when I was healthy it only took 20 minutes! At weekends we try and go further afield and we walk for about an hour but if I do too much I end up paying for it later.

I used to be very active, swimming, cycling, walking etc but have to settle for the walking now but it is playing havoc with my weight. I have to be very stict with my diet or I tend to put loads on. Its a very fine balance between eating too little and having no energy or eating too much and not burning it off.

I do count myself lucky though, I am still here and I am still working.

Take Care and have a great holiday

Hi Trog,

Good for you! So many people decide to lie down and be poorly but I honestly believe keeping as active as you can helps your health. We belong to a walking group that meets at 10.30 every Friday and Saturday. We're retired and not early risers and many times on a walking day I just feel like turning off the alarm and going back to sleep (I don't sleep too well these days - drugs? I don't know.) But I usually make the effort and it's great to be out and gabbing to the others. I can always have a snooze in the afternoon.

Talk about cold today! We've been shopping and I was literally shivering standing in the car park loading the car. Torrential icy rain. Corfu has got to be better than this! I've fished out my flanelette pyjamas. Just call me wild and sexy.

Best wishes, Shelagh

Hi Shelagh,

Thanks for your reply. Just had a two week tummy bug and then ended up being taken to hospital with severe jaundice - liver specialist blames the Glivec and the Haematology expert argues not in a million years - its all good fun. At least I have stopped looking like Bart Simpson now so thats good. When is the holiday?
k

Glad you're over the tummy bug and the jaundice. I wouldn't have thought the Glivec would cause it, but you never know do you?

Off on hols this evening. Naturally, the sun's cracking the flags here and there are mosquitoes all over the show. Typical. Might as well stay at home!

I walked on Friday and have done something weird to my leg. Feels like tendonitis or something. No time to go to the doc so will have to put up with it and hope it clears up. Hoping the warm weather will improve things. And Kim, my partner, has decided to have an attack of gout. A right bloody pair we'll be! And the apartment we're staying in says in the brochure 'not suitable for those with walking difficulties'!!! Oooops.

I have actually heard of Bart Simpson but have never watched the prog. Does this make me a social outcast?

Keep smiling.

Love, Shelagh

Hi Shelagh

Definate social outcast!!! I love the fact that you have the same issues as me - my other half always seem to get gout whenever I get ill - i reckon its a jealousy thing but can't prove it (yet...)!
Have a great holiday - mine is 5 weeks away and counting then 2 weeks of sunshine in Tunisia - hurrah
Kx