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CML, Interferon, and Neuropathy

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#1 demagruder


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Posted 22 January 2011 - 08:11 AM

I am seeking advice and opinions on a personal situation...

Back in 2007, I first found out I was pregnant so I went to my OB who conducted the regular bloodwork.  My CBC came back pretty wacked out and it was ultimately discovered that I had CML.  After getting two doctor opinions, my husband and I decided to begin seeing an onc at the siteman cancer center in st. louis.  We also chose to wait on treatment until the second trimester, at which time I began taking Interferon alpha.  I took interferon throughout the second and third trimesters and we now have a beautiful healthy 3 year old daughter (almost 4). As soon as she was born, I began taking gleevec and within a year I was in molecular remission!  After the pregnancy, I continued to have this nagging pain that started in my lower back and shot down the side of my left leg to my foot.  While pregnant, I thought it was due to the pregnancy, but now think it could be from the biopsy or interferon.  

After a year of discussion with all my doctors, my husband and I decided to try to have one more child.  Last April (about 10 months ago), I switched from Gleevec to Interferon and we began trying.  We did get pregnant quickly, but just as quickly lost it.  Since I did not want to switch back and forth between Gleevec and Interferon due to my doctors concern with forming a resistance to Gleevec, we started trying again as soon as we could.  At this point, we are not pregnant and I have been on Interferon for 10 months.  My doses are pretty low - 3 mill units, 5Xs a week.  Since I only take interferon 5xs a week, my symptoms restart with the beginning of each cycle... So I found myself having cold chills, sweats, muscle and joint pain every weekend when I restart my 5 days - that was until my doc prescribed vicotin.  My doc tried bumping me to 7 days a week but had to lower it again because of white counts, platelets, etc getting to low.

From the beginning, I have had arthritis-like pain in my hands and feet, coupled with headaches.  Each morning, I have tingling in my hands and feet, which filtered into my arms when I was on the higher dose.  Back pains seem to be developing too.  My skin is very sensitive to pain also, and I seem more prone to depression.  To help the pain, they prescribed vicotin and my OB has actually approved it for the first two trimester of pregnancy.  I am still in molecular remission, but 10 months into Interferon and not knowing when I will even get pregnant again is becoming daunting.  I just found out that some people who develop neuropathy during interferon treatment report that it does not go away.  Have any of you experienced this?  If so, did your neuropathy go away after interferon treatments ended? Also, I am trying to decide how long we should try before giving up.  We wanted to try through the end of the summer, but knowing about the problems others have had with neuropathy may change that for me.  Any words of advice?  By the way, I am currently 34 years old.


#2 Trey


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Posted 22 January 2011 - 10:54 AM

Just as overview information, Interferon is naturally produced in the body.  But when it is taken as a drug it can make someone feel very ill, as you have noted.  When a woman is pregnant, the body produces higher levels of Interferon to help prevent the mother's body from attacking the cells of the fetus, since the fetus cells can be seen as an invader.  This increased level of interferon is why some believe that pregnant women can keep CML under some degree of control during the pregnancy. 

The hip and leg pain sounds like what can happen when a nerve is disturbed during a bone marrow biopsy procedure.  Depending on the level of disturbance or damage to the nerve if this actually occurred, it may not go away easily.  But it could be unrelated to the BMB procedure, since this type of pain can happen in anyone.

I would be a little concerned about taking Interferon while attempting to become pregnant.  There are some cautions about becoming pregnant while taking Interferon alpha (note that there are several types -- probably it is Interferon alpha 2c), so you may want to discuss the level of risk with your doctor:

"Do not become pregnant while taking this medicine. Women should inform  their doctor if they wish to become pregnant or think they might be  pregnant. There is a potential for serious side effects to an unborn  child. Talk to your health care professional or pharmacist for more  information..."


Since you appear to respond very well to TKI drugs, temporarily stopping Gleevec treatment from now through pregnancy would seem to be fairly low risk assuming a fairly quick conception.  It would also give you a break from the Interferon symptoms, and allow you to see which ones go away.

More info:


#3 cherylannes


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Posted 26 January 2011 - 09:23 AM


Sorry for the delay in replying, I've been rather busy.  I was dxed with CML in Nov 2000 and IFN was my first therapy for CML as we did not have Gleevec at the time.  I was very lucky because much like you, I responded well to low dose IFN.  In 2003 I switched to Gleevec (peer pressure, ahem) and my quality of life was miserable, I also developed eosinophilia.  I begged my doctor to switch me back to IFN, which he did.  The eosinophilia went away and I continued to respond well to the drug.  When Sprycel was approved I tried that, as I do very much believe in TKI's in general, however, after six months the eosinophilia was back and some miserable side effects, such as very achy joints, etc.  This time however, we lowered the dose of Sprycel and added back some IFN, which brought down the eosinophilia.  All this to say that since 10 years with CML, I have been on IFN for over 5 of those years. 

THe pain you are describing running down your leg from your hip could very well be as a result of the Bone Marrow Biopsy, you can go see an osteopath perhaps and they can look at it and give you some exercises to do to get rid of the pain.  The neuropathy may very well be a part of the IFN therapy, but then again, I know patients who have never been on IFN and have neuropathy.  So this could very well be a side effect of all treatments for this disease, but not everyone experiences.

From my understanding in talking with all the top notch CML experts in the world, as I travel to all CML conferences and I am very well known to them, IFN is the treatment of choice for anyone trying to have a baby.  If you are PCR negative, PCRU/CMR, it might be possible to reduce or stop all together IFN during pregnancy.  Even more so if you happen to get pregnant with a boy.  There is data coming out that patients who have boy babies seem to have less riskier pregnancies with regards to the CML relapsing.  Interestingly, there is a slight difference in favor of men stopping therapy all together, so there is something hormonal about this.  I spoke with Dr. Neil Shah about this last year and they have noted this occurrence with CML patients getting pregnant.

There is some literature out there.  I was 43 when I was diagnosed and not thinking about having any more children.  But if it were me, I would stay the course and maybe speak with a fertility consultant to see what can be done to improve the odds of getting and staying pregnant.

Additionally, there is some new work on IFN that is showing that if one can stay on IFN for 18 to 24 months, there is a significant potential that these patients will have more success with stopping treatment and remaining relapse free. So, these are all important things to consider..

Hope some of this helps,

Cheryl-Anne Simoneau,

President, The CML Society of Canada

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