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confused and scared

hello everyone!

 

its been a while since ive been on here, been busy getting married!  the big day was dec 4th and it really was the day ive dreamed of since i was a little girl. we went to the maldives for our honeymoon and what an amazing place that was. i swam with turtles and sharks and saw all kinds of amazing fish!  now its back to reality, feels strange to have nothing to plan for!

this is actualy my problem at the moment.  I have been so busy over the last 18 months with wedding planning, the diagnosis in may even took a back seat, if you know what i mean.  But now it feels like ive just been told all over again, i cant stop thinking about it.  My husband and i had plans; marriage then a family, we have even spent the last two years making our home ready for a family.  Now i dont know what to do.  Im on dasatinib taking part in the trial. It hurts so much to have all our hopes snatched away from us, sometimes i think " to hell with it, lets try for a baby" then i think how irrisponsible that would be of us.  im in this trial for the next 7 years, that makes me 35. That just feels so long away, and then what if we are not successful to have a child?  so many things are going through my head at the moment.

im responding well to the treatment, i have my next check up in feb 2011,.

we got fab news just before xmas, my only sister is a complete match for me, if i ever need one in the future!

anyone who can help me would be great, im just feeling a bit lonely i suppose.

take care

alison

Hiya Alison,

Congratulations on the wedding, your honeymoon sounds lovely.

People seem to be told different things about the subject of having children, I am on 400mg Glivec and was told that although they are not 100% sure on the effects of Glivec on a fetus people have had healthy babies while on it  but I think the best thing to do would be to discus your options with your Hematologist.

I already have 3 children so we have decided not to have anymore anyway but I did ask about this just in case and was told it was possible.

I have no idea about Dasatinib and was only diagnosed 4 months ago myself so am still learning about it all but hopefully someone else can give you more information.

Take care

Jackie

Hi Alison,

   I am so glad that the wedding went alright - I knew from your other posting that it was due this December, and hoped it had gone ahead alright. Swimming with turtles sounds totally awesome!

   I'm sorry that I can't actually help you with the other thing - I have no idea what the pregnancy options are on any of these drugs. My son is ten, and we had decided ages ago not to have any more, so it hasnt been relevant. There must be a lot of information about it, though, surely? Can you ring your clinic before your appointment in February - otherwise if you're anything like me you'll think about it daily till then anyway!! I'm sure they'd be happy to talk about  it.

   I hope the Feb check up goes well for you, it is brilliant that you have responded well to the drugs, I am so pleased for you. I am also really, really pleased that you had the day of your dreams and a lovely honeymoon.

All love,

Ali   xxxxxxxxxxxxxxxxx

Hi Alison,

Congratulation on the wedding and I hope you had a wonderful first married Christmas.

I am 40 years old and single, dx'd 21 months ago and have a pcr of 0.007% and am currently on 400mg Tasigna.

I go to Hammersmith hospital which is a centre of excellence and they have a good knowledge of pregnacy with CML. I asked at my last visit, what the chances of me having a baby, and whilst my age and the fact that I don't have a partner yet is obviously an problem ;-) the consultant assured me that the CML wouldn't be a issue given my low pcr.  All the women with a low pcr initially, came off the drugs for conception and pregnancy, and their pcr only increased slightly, and they returned back down when they started the treatment again.

I would strongly suggest talking to your doctor and also getting a referal to a centre of excellence who have a wealth of knowledge and experiance with this.

Good luck and its always worth speaking to someone with regards to the actual diagnoses, as you say you have been so busy that you haven't actually dealt with it yet.  It takes a while to get your head around, I have found the support meetings invaluable and have met some amazing and inspiring people who I now count as good friends. 

Happy new year

Lynn xx

thank you for your replies!

i am going to talk to my consultant about this at my next visit.

im currently at manchester royal infirmary, sometimes i feel like im a nuisance when i go, the doctors seem so busy all the time that sometimes im only in the room 5 minutes with the doctor, after a wait of 2-3 hours and a drive of 2 1/2 hours!

i also would feel more comfortable in talking with a female doctor about this issue as i feel a male doctor cant relate to this issue the same as a women can, i dont mean this to sound sexist in the slightest!

i also hear sometimes on this site that people have been put in touch with others with cml, i should ask my doctor this too when i go.

anyway, going to go now as got shopping to do!

take care of yourselves and i will talk soon.x

Hi Alison,

Have you ever read Erin Zammett Ruddy's Blog on the US Parenting.com blog. She too has CML and had come off the meds twice to have two gorgeous babies. She has done really well.

She is also on Facebook on my friends lists, I am Elizabeth Thornley "cosgrove" if you want to add me, and find her. She is great to listen to, and very inspiring.

Best wishes Liz. x

thanks liz i will have a look now, its good to hear of peoples own experiences

alison.x

hi Alison

Glad to hear your wedding and honeymoon have gone so well - I was only wondering about you the other day as I knew you were hoping to get married. I don't know much about the pregnancy and drug side of things, but it seems there are people who do! So good luck in getting the info and advice on that side of things! I know what you mean about feeling lonely and trying to get your head round it all (like you I'm recently diagnosed and on the dasatinib bit of the Spirit 2 trial),I think everyone has their wobbly moments even when they have got lots of support from others. I think it will get easier with time - in some ways, we've come a long way already, but it doesn't always feel like that. There seems to be lots of support/ideas on different forums, and you may well find support at your hospital too. Or they may be able to recommend a group/person for you to talk to (I'm going to the Penny Brohn centre near Bristol later this month. It's a complementary cancer care centre.) And the Macmillan lady at the hospital has given me a relaxation cd. ..,I guess after such a big event (wedding/honeymoon) normal life is going to seem almost a bit of an anti-cliamx initially!

anyway, congratulaltions on your marriage and every good wish for the future. feel free to get in touch!

jo

Hi Alison,

I am in a similar situation, my husband and i got married last year too and would love to have children!! it is on my mind a lot and understand how difficult it is! my specialist has been very supportive which is excellent. We were told to wait until my PCR was 0.01% if i can get to that level the plan would be to come off the drugs and wait until the drugs were out my system and then try for a baby. I would have a 3 month period to try and then if i wasnt lucky enough then I would maybe have to go back on the drugs and wait for a next break. i think its important you work with your specialist as they would monitor you regularly. ideally i would prefer to not take any drugs through the pregnancy but my specialist did say that i should be prepared incase my result get really bad. He said the first 3 months are the most crucial for not taking the drugs as this is when a baby is forming. I hope this information helps and wish you the best of luck in the future! xx

Ps Congratulations on getting married!! :-)

Hi Alison,

We are in the same boat! I was diagnosed in June '09 and am responding well to Glivec. For the last 2 of my 8 weekly checks I've been 'hovering above zero'.

My husband and I are 32 and we would like to have a baby - I had a miscarriage at 11 weeks which led to my diagnosis. We've read around the subject and my haemotologist (Trafford General) referred us to the St Mary's in Manchester and Hammersmith. We had a very helpful chat with Prof Jane Apperley at Hammersmith. Her advice is to wait until I sustain 2 years at zero until getting pregnant. However, she said it's up to us to weigh up the risks and decide what is best because 2 years is a long time to wait. She said that there are options to take Interferon whilst pregnant, but I could just stop all medication and see what happens. I asked about monitoring and she said that my haemotologist would keep an eye on things during the pregnancy.

Anyway, it was very reassuring to speak with her because she clearly knows her stuff in great detail and has seen it all before. The doctors at Trafford are more cautious and I get the feeling that they would rather I forget the idea and stay on Glivec, or that I receive further treatment, monitoring and advice from Hammersmith.

St Mary's do IVF and the doctors there just took some routine tests but basically said that there's no need to use IVF to get pregnant quickly and said it was up to the haemotologists to advise a course of action based on the CML constraints.

I know what you mean about the doctors being busy and turfing you out quickly! I have got used to this now. When I want to discuss something with them, I take someone else with me so that we have 2 pairs of ears to take in the answers and I also write down the list of questions so I don't get deterred.

If you want to get in contact and discuss it further, let me know and I'll send you my email address. There have been other posts on here from people in similar situations.

My plan is to see how my results are in September (I'll be 33 by then and on Glivec for 2 years 3 months) and then make a decision.

Oh, also I have an article from Blood Times (or some such title) with some empirical results that I can send you or post here when I find it.

Stella