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Hello all. I was diagnosed with CML with the Philadelphia chromosome in February this year, and have been put on a trial through the hospital for Dasatinib (sprycel). I'm 31, newly married (April 1st), and have a four year old stepson. I go in early next month to have my 3 month (a little late) check up and do another bone marrow aspiration. Surprisingly, it's been really hard to find a support group here in the states, and the people that I am around just don't seem to get what I'm going through. I think the biggest problem is I don't LOOK sick. I don't LOOK like I have cancer, so it's easy for those around me to forget I'm fighting a battle of my own. 

The first month was REALLY difficult with lots of nausea and chest pains. Those seem to have subsided. My biggest complaints are the bone pains in my shins and forearms, and ALWAYS BEING TIRED. I joke with my husband that I am forever going to be a sleepy girl. I was hoping that it would change, but reading here has made me realize that fatigue is most likely one of the lasting effects. 

I'm hoping to find some support here, and put my mind at ease that I'm not the only one going through the things I am going through. 

The hardest part for me in all of this is being told that while I am on the Dasatanib, which is indefinitely, I cannot have children. My husband and I had just decided to come off of birth control and start trying for a family. Two weeks after making that decision, I was told about my CML. It was crushing. With Mother's Day just around the corner, I'm having a hard time coping. 

Looking forward to making a few friends here!

Jen

Hello Jen, and welcome to this site.  I'm sure you will find plenty of people who have similar stories to yours.  I was (comparatively) lucky in that I wasn't diagnosed till well after childbearing years, so I haven't had that extra cause of distress.  However, you will find that some people have gone on to have babies even after diagnosis, and I hope they will see your post and get in touch.

I fully share your frustration that people around you have no idea of what you are going through, since you won't look ill - you won't lose your hair, for example.  I believe that most of the side effects you are suffering will lessen over time, though fatigue is one of the more annoying ones and you may have to make some changes in your day to accommodate extra sleep when you need it.

Please don't feel that you are alone, there are plenty of us to answer your questions and who will understand.

Olivia

Hello Jen.

I am 39, diagnosed last year; older than you but still much younger than the average CML demographics.

I am also on Sprycel, and have been since day one since I was borderline chronic/accelerated phase.

Side effects, generally speaking, tend to decrease over time. I was lucky enough never to experience nausea, but when starting Sprycel I had a strong headache hitting me about 4-5 after taking the pill. After a few days it started to lessen and in a few weeks disappeared. Its legacy is a sort of tiredness appearing around that time of the day, only on certain days, when I am particularly tired for  other reasons.
I also had lots of skin rashes; they did not go away, but are now reduced to a few pimples, as if I had eaten too much chocolate.

If you don't do that already, I believe drinking lots of water should help lessening side effects. I suggest you use a method to make sure you do drink that water (it's easy to over estimate). I have a Guinness pint which I fill with water (blasphemy!), and drink when not having food; when that is emptied three times, I know I've had 1,8l of water, which gets me to 2l with the water I consume with food.

Since you have started Sprycel quite recently it's probably still time to indulge, and get yourself as much rest as possible. Later on exercising is supposed to do a great deal to counteract fatigue; it's paradoxical but it works,

As for babies, it's all up to your BCR-ABL levels; if you weren't diagnosed in blastic phase, and manage to get your BCR-ABL level to a low level (certainly under MMR, hopefully PCRU), you might consider temporarily suspending Sprycel and switching to interferon. That's kind of standard practice for child bearing with CML. Of course it's complicated, and takes time and patience.

All in all, things tend to get better with time; one year ago my world was just CML; now CML is just part of the story.

Good luck and keep us posted!

Davide

 

Hi, I also live in the US and have looked around for something here but found nothing. It is nice to have this site even though it's UK! 

Sorry to hear about your diagnosis and the doctor's advice not to have children. (My doctor said the same thing but he was joking since I'm 54 and my kids are grown.) That is a tough one, for sure. Congrats, though, on your new marriage -- there is so much happiness in being half of a committed couple, and your stepson can bring joy to it, too.

I struggle too with not appearing to be sick, although my eyes are always swollen and I've wondered if people think I have a massive hangover every day! It is a strange new world but I try to keep remembering that 15 years ago we would be dying in a matter of months or a few years at most, with this diagnosis.

Take good care of yourself and good luck to all of us!

Justine

 

Who knows, maybe we'll be the ones to start a US site one day :) I'm in Texas! Thank you for the kind words, it really does help to hear from people who get what I'm going through.

"All in all, things tend to get better with time; one year ago my world was just CML; now CML is just part of the story."

You have no idea how much hope that gives me right now. I needed to read this today.

Hi Jen,

Others have given you great advice. But I wanted to add in my thoughts too, particularly around your doctors comments regarding pregnancy.

If your doctor has told you that you will never ever be able to have children, that is I think irresponsible. CML complicates pregnancy a lot, for sure. And for some people it does make it very very difficult or impossible. But not for everyone.

Without getting into the details of it, as I am sure you still have a lot of "processing" to do of your diagnosis, I'm going to describe an ideal situation that you could find yourself in in a few years.

Imagine this scenario in the future: 

  • After a few years (maybe shorter, maybe longer) of treatment on dasatinib / Sprycel your CML is well under control, with a low PCR result
  • You'd like to have a baby, so plan this with your partner and talk about it to your doctor
  • Given your PCR result is now, you stop taking Sprycel and instead interferon is given to you which though nowhere near as effective as Sprycel will help control CML during pregnancy
  • You become pregnant, your CML is monitored throughout pregnancy, and successfully have a baby
  • Shortly after nursing, you start taking dasatinib again and your CML continues to be managed

Now, the above assumes a lot but it just goes to show pregnancy and CML is not impossible. Also, if you look at the DESTINY thread at the top of the forum, you'll find people who have successfully stopped taking TKIs altogether and though their CML is not eradicated it does not grow. If you were able to do this (and that's a BIG "if") you wouldn't be taking a TKI at all and therefore the pregnancy risks are much much smaller.

So to sum it up, pregnancy with CML is more risky than in a patient without CML - but it is not impossible.

If you want to find out more, do two things: type in "pregnant" in the search box at the top right of this web site and look through the results. There's lots. Also, watch this video from Prof Jane Apperley who, to put it lightly, knows a thing or two about fertility and CML.

David.

Hi Jen and welcome to this forum.

Although as you say we are UK based we are certainly not confined to the UK. This is an online forum for anyone with CML (and/or their family members) no matter where they live. The only restriction is that you will need access via the internet. 

I am sorry you have to deal with this diagnosis, especially as you were so recently married and looking forward to starting a family. Life seems very unfair and has a habit of hitting you in the face sometimes just when you think you're moving forward. However, the good (no GREAT) news is that CML patients treated with TKI therapy over the last almost 2 decades, have recently seen a further revolution in understanding not only how CML works but also how TKI therapy can best be used. Recent data coming out of clinical trials show that a proportion of patients can stop therapy and maintain their response. This is called 'treatment free remission' and you will see more and more references to TFR on this and other fora. There is a lot of work going on trying to find out why some, but not others, can maintain their responses without continued daily therapy with TKI anven though evidence of Bcr-Abl may still be found in the marrow.

I will not repeat what others have said here other than to say that  you have been given great advice, but I would say that you and your husbands goals just at the moment might be: 

a. to try to accept that CML is something you will have to face up to - but together you will find a way to get out of the mists of sorrow and fear that are probably overwhelming you both at this time. We have all been in that place believe me. 

b. to talk with your husband about how you really feel and try to get him to tell you about his feelings too. Understandably our loved one's find it very hard (if not impossible) to express how they feel for fear of upsetting us, and they can suffer greatly from keeping their emotions hidden.

d. Keep your focus on reaching your treatment goals as outlined by NCCN guidelines https://www.nccn.org/patients/guidelines/cml/files/assets/basic-html/page-1.html# and/or European Leukaemia Net recommendations for treating CML. Links can be found on our resource page.

e. to try to understand how TKIs work and which tests will be used at different times to measure your response.

f. read our booklet about qPCR testing which can be found on our home page or by scrolling down this page - this qPCR primer for patients contains lots of information about CML and how it 'works'. Once you understand this you will understand a lot more about BCR-ABL1 (the abnormal gene that causes and drives CML) and why it is important to reduce your levels down to the molecular level ..... preferably as low as possible. 

e. take time to watch the presentation by Prof. Apperley that David pointed you to. Pregnancy is a big issue for patients of childbearing age - not so much for males on TKI therapy, although there may be issues with fertility, but there is no evidence that there is a rise in the risk of foetal abnormalities caused by sperm exposed to TKIs . Unfortunately this is not the case for women. In early animal testing it was shown that TKIs can have an adverse effect on the foetus, at least in the first trimester (3 months). 

However, as others have already said, this does not mean you can never have a successful pregnancy. It just means you may be advised to put your plans on hold for a while... at least until you reach MMR/MR3 (which means that Bcr-Abl levels are stable at, or under, 0.1% ) .

Then you might be able to discuss your options for a 'managed pregnancy' with a couple of options for monitoring your Ph+ white cells and keeping them under control for 10- 12 months or so depending on how quickly you get pregnant.

Some women discover they have CML after they are already pregnant. Depending on the treating clinician (and the stage of the disease) the advice may be to terminate the pregnancy and start therapy immediately. However, some women have not wanted to do that and - again depending on their individual situations - have opted to delay starting TKI therapy and start treatment with either Interferon alpha which in the past was the treatment of choice for most patients for whom transplant was not available or not appropriate.

IFN A is no longer first line therapy because of the success of TKIs - as well as its side effect profile which is quite challenging. However, should you opt for IFN as a way of controlling your CML during pregnancy there is an option of using a better tolerated form called pegylated interferon. If available this could be an option for the duration of the pregnancy with a change to one of the TKIs after the birth.  Or you could opt for a procedure called Leukapherisis. This controls the white cell count by taking the peripheral blood from a vein in one arm... passing it through a centrifuge which separates and discards the white cells before pumping back all the other blood cells and plasma etc. back through a vein in your other arm.  I think this procedure is done periodically depending on how quickly your white cell count increases. 

Other women have waited until they have a stable optimal response to TKI therapy before stopping treatment with the support of their clinician. Of course this strategy needs increased monitoring by PCR with an eye on the white cell count too. But there are many cases worldwide of successful pregnancies and births after a diagnosis of CML so don't lose hope.

Do as much research as you can and talk with your clinician.... it may mean you need a second opinion from another CML clinician with a special interest in fertility and pregnancy. 

You do not say where yo live but there is an excellent support organisation for US based CML patients run by Greg Stephens.  It is very good and has lots of helpful advice for US patients, including a list of specialist CML clinicians and centres. See here: http://www.nationalcmlsociety.org/living-cml/cml-specialists

I hope this is helpful, and remember you are always welcome to ask for help and support here on this forum - as I said our aim is to help patients find the right support for their needs, no matter where they are based the world.

BTW: why do you need another BMB? Most clinics no longer require you to have this procedure more than once at diagnosis. Is it a requirement of the clinical trial?

Sandy 

Hi Jen

There have been several CML pregnancies and one patient on the CML UK Facebook site has recently posted that she has now had what she calls 3 "cancer babies" - all healthy and thriving and she has regained remission after breaks from medication for pregnancy. Others on here have answered you in much more detail with helpful links to pursue but I just wanted to add that pregnancy is still very possible with CML and to put you in touch via FB with others who have successfully had families

best

Chrissie.

Thank you for going into so much detail. I feel like, even after 3 months, I really know nothing about this disease at all!! 

Thanks for the US link, as well. As it turns out, my doctor, Dr. Jorge Cortes, is actually an Advisory Board Member of the National CML Society. He is pretty highly regarded here in Houston, Texas, where I live. 

I have to have another BMB to see how the TKI's have been working in my marrow and make sure that treatment is going as planned. I thought it was routine, as I was told it needed to be done 3 months in. But maybe it is a part of the trial. (I am SO incredibly thankful to be on this trial and receive the Sprycel for free...otherwise i'm not sure I'd be able to afford it!). 

Thank you so much! That hope is what I need right now.