Health

Cancer Update: It's not as good as I'd hoped

By Erin Zammett Ruddy on Wednesday, November 4, 8:54 am EST

I was debating whether to even post about this, but then I thought, what’s the point of writing a blog about your life if you’re not going to share the nitty gritty details? So here goes…

I got a call from my oncologist, Dr. Mauro, a few days ago and my latest cancer test came back with a VERY WEAK positive. I capitalized very weak because I don’t want you (or my family, who reads this blog) to think this is anything to panic about. It’s not. It is so low that it’s barely quantifiable. If the test hadn’t been run in the super-sensitive lab at OHSU, it never would have shown up. And it may just go away on it’s own by next month. Am I worried? No. I’m really not. I only have two months left in the pregnancy and even if -- if -- the cancer seems to be creeping back, it will be so slow moving that we wouldn’t treat it until after the baby comes. And I’m already planning to go back on Gleevec right away anyway.

I’m not going to lie and say that I’m not a little disappointed. Mostly I’m bummed because it’s the first time in over four years that my CML has made a peep (I had a very slight positive on one test back in 2005). It didn’t come back at all when I was pregnant with Alex and I was hoping the same would be the case this time around. Seeing a positive result -- no matter how minuscule -- reminds me that I have cancer. That I am not cured. That I never will be.

The plan is to be tested again right before Thanksgiving and then again right before Christmas (we upped it from every 6 weeks to every 4 weeks) to see how things are looking. Again, there is really nothing that we’d do, it’s just a matter of staying on top of things. Dr. Mauro and I will decide if it makes sense to breastfeed for a bit or just go immediately back on the drug (I’m not a huge fan of breastfeeding -- more on that topic later -- so skipping it this time around would be fine by me).

Anyway, just wanted to let you guys know. Kind of a bummer but, really, what did I expect? I’ve been off treatment for seven months. And I promise it’s not a big deal. As soon as I start treatment again, my tests will be back to normal. If you have time, check out this amazing article about Gleevec and the man who developed it. I am so lucky to have this drug and I can’t wait to start popping my pills again!

Terri

CML and parenting

11/4/2009 at 10:11 am

Hi Erin - Just wanted you to know you are in my prayers. Also, I know of more than one person who stopped Gleevec for various reasons and when back on it, all is well, so hang in there. Also, thanks for the article link. I, too, feel so blessed to have this medicine!! As far as big kid bed, I put my daughter in one about a month and a half before her little sister was born. We made it a big deal - special day, and she did fine. I was also nervous about where she might be wandering while I was asleep or something, so i really laid down the ground rules that she had to call for us. It worked out fine. I also waited to potty train until a few months after the birth. It was rough. I was tired and short tempered. I didn't like changing diapers on two kids, but I didn't want to put in the effort or stress out my older child when so many changes were happening to begin with. It worked out eventually. I guess it always does! Good luck!

Melinda

I am so sorry that the test

11/4/2009 at 10:14 am

I am so sorry that the test results were not gleaming. I will pray that things continue to go well for you. Not that my opinion matters, but you should go right back on your drugs after you give birth. Your baby needs you more than it will need breast milk.

G.G.

So sorry

11/4/2009 at 11:04 am

Oh Erin! When I read this entry my heart kind of sank - I don't know you but feel like I do. I so admire your positive attitude. It seems unfair that you have this hanging over your head at *all* while pregnant (and while not pregnant, of course). You deal with this so well and admirably. When something stressful happens in my own life (stressed about bills, wondering when to TTC, annoyed with my husband for forgetting to take out the garbage, etc), I often actually think about you and how you manage to remain constantly upbeat and fearless about cancer. I honestly think if I were in your shoes, I would spend all my time wondering "what if," paralyzed and counting down my days, freaking out. It takes a strong person not to do that! (Not that you should be counting down your days - god no - I just mean, it's what would cross my own paranoid mind.) Anyway, I am blabbering. I'm so glad you can get right back on your pills and you have such a great team of doctors! You are really amazing.

Talia

Hi Erin, Although this isn't

11/4/2009 at 11:37 am

Hi Erin, Although this isn't the best possible news, it's reassuring that in 2 short months you will be able to back on your treatment and hopefully send those cancer cells packing. I have testing often for thyroid cancer, and anytime it's ever tested positive - a weak positive - (and they assure me that the labs are so advanced now that if this was 10 years ago it wouldn't have even shown up) it's still like a little wake up call. Good for you for staying positive and focused on keeping your baby healthy and for not letting the results overwhelm you. You are definitely my inspiration for living with cancer AND being able to have healthy babies. I'm sure your little girl will be just as perfect as your son and you will be healthy and able to enjoy her! Thanks for keeping us updated!

Sandy

Positive Thinking

11/4/2009 at 12:19 pm

Sad to hear the results weren't as expected but happy to know you've once again taken the bull by the horns. Continue to think positively and you will see that in no time, you will have your little one in your arms and everything under control with the help of gleevec... btw.. how's the baby's room coming along? pictures?

Taylor Newman

Thinking of (and inspired by) you

11/4/2009 at 12:24 pm

Hi Erin, I'm sorry about the test. This is probably not entirely realistic, but try not to think of the test or the cancer, if you can keep your thoughts and focus elsewhere -- you've got a great doctor, an effective drug, a game plan, and a beautiful baby on the way. You have had to face illness head-on far sooner than most people, but you're clearly vibrant and thriving, and very grounded, in spite of (and maybe in part because of?) it. Thanks for being such a positive example for all moms (and other people too)! I'm thinking of you and sending healthy thoughts your way.

JPlourde

In the same boat...

11/4/2009 at 12:56 pm

Hi Erin, I get exactly what your feeling. We're in the same boat except that I lost my remission a bit faster. I started to test positive for CML only 12 weeks into my second pregnancy. Although it continues to progress slowly (not any faster or slower than with my first pregnancy), the docs have decided to be a bit more agressive and try to slow the progress. I'm now at 18 weeks and in two weeks I go on low doses of Interferon. I was on it for a year in 2002 (before Gleevec became the firstline treatment for CML) and I'm not super excited but ultimately, it's to make sure everyone is safe. Take care and don't worry too much about it!!

Livia

Erin, hang in there... you

11/4/2009 at 9:48 pm

Erin, hang in there... you will be just fine. It's awesome that you were PCRU before for so long, so now a little bit of CML while being off the Gleevec for quite some time is okay... I think:) JPlourde could you please sent me an email at elcipser@gmail.com? I am in a proccess of getting pregnant. It is a very scarry moment, but I need some suggestions, some advise. I will appreciate your help. Livia CML 6 years.

Anonymous

Take Tasigna next time.

11/4/2009 at 12:58 pm

Take Tasigna next time. Easier to take than Gleevec.

Sheila

Good thoughts

11/4/2009 at 1:12 pm

Erin - I'll be keeping you in my thoughts. I read the article about your doctor, and he is indeed a genius. The article actually brought tears to my eyes because he found the answer to something that was once a death sentence. Amazing. Our boys were born within days of each other,and I've been following you since you first started writing about your journey in Glamour.

Lauren

Thinking about you

11/4/2009 at 1:32 pm

Erin, I'm sorry to hear about the test results not being all clear again. I'm thinking about you and your family and you're in my prayers that the remainder of your pregnancy goes as smoothly as possible. You are very brave to share your journey will all of us, I hope you know that and we are all rooting for you.

canadianbrunnette

bummer! :(

11/4/2009 at 1:33 pm

Thanks for the honest update - will be thinking of you - i'm sure the next 2 months will fly by!

Merissa

Erin, I will keep you in my

11/4/2009 at 1:40 pm

Erin, I will keep you in my prayers. I know that you will do great and as soon as you go back on Gleevec, the CML will go back into hiding. I love your positive attitude. Selfishly, I have to admit that I am a little disappointed because I thought that since you made it your whole pregnancy with Alex without the CML coming back that maybe for some, Gleevec could be a cure. I know that everything says the opposite, but a girl can always hope, right :).

Sarah

Sending good vibes your way!

11/4/2009 at 3:06 pm

I got a little worried when I saw the title of this post, but I trust you when you say its not a big deal. Either way, I'm sending good vibes your way and will be thinking/praying for you!

kathleen burlage

thinking of you

11/4/2009 at 7:02 pm

i have known you for so long to be strong and courageous, but most of all positive. all these qualities will make the remaining two months of your pregnancy healthy!! i am confident you will be welcoming the new angel with much excitement and enthusiasm. contine to think positively. sending you healing energy and love, kathe

Glenda

Thinking positive thoughts

11/4/2009 at 7:45 pm

Thinking positive thoughts for you and your test results. I'm sure if it's that minuscule and you're not too worried... you'll be okay. I would skip the breast feeding... afterall I remember the case you had with the boob over at "Life with Cancer" and immediately after having the baby go on your Gleevec. Stay strong and positive thinking! XX

Erin Z. Ruddy

Thank you guys!

11/4/2009 at 8:33 pm

Wow, these comments are so great. You guys rock. I know I probably sound like I'm in denial but I'm really able to be positive about this whole thing and not think about it much at all--could be the two year old running around my house 24/7 (he climbed out of his crib during naptime again today...ARGH!). Thanks for your support and I will keep you posted on everything. XOXO

Georgia

Hi Erin, wow, I know how you

11/4/2009 at 9:56 pm

Hi Erin, wow, I know how you feel. I had that news for all three pregnancies--not the worst news ever, but like you said--a reminder that you still have cancer. I think I tend to have a mild dose of chronic worry about the whole thing, but then I find my hope is chronic as well. I'm really glad you don't have to do Interferon and that you only have two months left. It's comforting to have great doctors working with you and helping you make the best decisions. How's your husband holding up? My pregnancies and CML were hard on my husband. He felt helpless in so many ways. BTW--I'm still not back in remission after my last baby (and he turns 1 tomorrow!) but praying the numbers will keep going down--weaker and weaker and negative---for you as well!

Wendy Selman

Hey Erin

11/5/2009 at 7:28 am

You know my story a little, but I was diagnosed with CML in 2005 and went into complete cytogenic remission until I get pregnant in April 2008. I went off the Gleevec while pregnant, had my beautiful baby girl, Hollis, in December 2008 and stayed off the Gleevec until July when my counts showed back abnormal after being off Gleevec for over a year. And I got checked every month during and after my pregnancy weather it be bone biopsy or bcr/abl ratio tests. I have been back on Gleevec for about three months and it is a little rough as you know, but I knew what to expect this time with the bone pain, nausea, and diarhhea. But nothing compares to my daughter who is almost one and I am sure you feel the same way about your son, who is absolutely adorable btw. Blogs come with the good and the bad, and it makes people like myself know there are other people out there that can relate to me and know what this disease is and how we as the younger people getting this disease are coping and living out are lives with these great drugs that are constantly being researched. I have my Light the Night Leukemia walk next Saturday and have supporting them for five years now. You can check my page at: http://pages.lightthenight.org/swfl/Naples09/waselman Thank you Erin for continuing to blog on all things, wether it be the good or the bad. Sincerely, Wendy Selman

Nina

Hey Erin, I'm so sorry to

11/6/2009 at 12:49 am

Hey Erin, I'm so sorry to hear this! But I am happy to hear how positive you are being about it. Keep up the positive attitude. You and the baby will be just fine. Keeping you in my thoughts.

Amaranth

Hi, I just read about your

11/9/2009 at 9:13 pm

Hi, I just read about your story on internet and searched for your blog. I am a volunteer in a charity group for CML patients in Shanghai. I translated your story into Chinese, and many patients here are impressed by your story. I want to you know that they are praying for you (there are over 100 people read about your story in one day), so you will be okay. :)

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