2 replies to this topic

[jcoon]

I was diagnosed with CML one year ago, and have been on sprycel ever since.  At the time of my diagnosis, my husband and I were getting ready to try for our first child (which lead to getting a physical, which lead to the diagnosis, which brought our baby plans to a screeching hault).  Well my onco told me to wait a year and we could start talking about pregnancy again.  So my year mark is here, and as of now the plan is to switch from sprycel to interferon just during the pregnancy.  He has warned me that the side effects from interferon are awful, and most people (60%!) can't tolerate it.  He told me it makes you feel feverish all the time, and that on top of morning sickness it will be pretty miserable, but he and other oncos feel it is the safest way to go. 

To anyone who has been on interferon, is it as bad as they say??? Is there anything that can be done to lessen the side effects?  For me, I have been lucky enough to have very little, practically no side effects from sprycel.  I like to think that maybe my body will tolerate interferon somewhat well, but I am pretty nervous about it.  Thanks!

[Trey]

Your Onc gave you an accurate, although likely worst case, scenario.  Interferon is a natural body enzyme, and there are also drug versions.  Before TKI drugs were available, Interferon was one of the main drugs used to treat CML, and a high percentage refused to take it over the longer term because of the significant reduction of quality of life.  But others found it tolerable.  So it depends on the person.  Also, symptoms are dosage dependent, as with any drug.  So if you go into this with a very low PCR result, you can possibly take a lower dosage.  And you should only attempt this if you have a minimum 3 log reduction by PCR, and preferably even greater than that.

You need to know your own tolerances.  Pain is one thing.  Nausea is another. 

[BY196]

My good friend who is a pharma research chemist, and who worked on one of the new treatments for Hep C (for which interferon has also been a primary treatment), cited a similar "non-compliance" figure for hepatitis pts and said it feels like you have a really bad flu when you're on it. I think your outlook may be different if you know it's for a limited duration (and a good cause) as opposed to something you'll be on indefinitely.

As someone who was on bedrest (albeit only for about 10 weeks) with my first pregnancy, my advice is to really plan ahead of time to arrange the support you will need in order to get through a period in which you may not feel up to doing many day-to-day things such as shopping, cooking, cleaning, etc. It's hard to research options and try to arrange help when you're already incapacitated.

Good luck--

Beth