Chronic Cancer

"So when are you done with treatment?"

That's a question that until recently had a fairly solid answer for most cancer patients. Many chemotherapy treatments have a beginning date and and ending date for each cycle.  A three month cycle or a six month cycle with an option for further treatment (if necessary) addresses the above question. There is no confusion because it is a solid timeline that people are used to hearing.

You can imagine the confusion when someone asks me that same question and I'm forced to say-"Never."

The problem with the question is that it doesn't allow for the current advancements in medicine.  Many cancers are now being treated differently than before. Chemotherapy in the traditional sense isn't the only treatment option being exercised to care for patients. New medications are being developed to help target specific cancer and cancer cells rather than attacking an entire body to reach a small section.

For me, I am on a daily TKI (Tyrosine Kinase  Inhibitor) that helps to manage my CML. The condition is chronic, it is not temporary, and unless someone attempts an ideally successful bone marrow transplant, currently there is no proven cure. I will take this TKI for the remainder of my life, as long as it continues to work, I don't develop a resistance to it, or the cancer researchers discover a cure through clinical trials.

Do NOT feel badly for me though. Prior to the early 2000's CML was almost certainly a death sentence. Traditional chemotherapy had little effect on the disease. With my TKI, I have a chance to live with my cancer and not die from it.

Don't get me wrong, my first thought when I was diagnosed was -"Get it out of me!" It's not an easy acceptance process when cancer is chronic, but still being alive three years past when I would have expired without the TKI, really helps.

Studying Fertility

Young adults who have/ had cancer experience some added concerns aside from the normal "am I going to survive?" question. For many people in this age group, they are just starting out. Perhaps getting married and thinking about starting a family some time in the future when cancer shows up. Depending on their doctor, fertility may or may not be discussed. Therefore, fertility may or may not be preserved for that "some time in the future."

It makes sense why an oncologist might not immediately think of fertility when a patient with cancer is sitting in front of him or her. That doctors goal is to save the patient. However, chemotherapy often times destroys fertility. If fertility is not discussed and preserved before treatment, once the patient is through treatment and ready to "move on" with life, there's another emotional/physical struggle to overcome. 

I'd like to direct anyone in this position to a couple of studies researchers are conducting regarding young adult cancer survivors and fertility. The more participants in these studies, the more awareness we can bring. We can make a difference :)

Fertility Information Research Study (FIRST)

Are you a female, ages 18-44 and have had a cancer diagnosis or cancer therapy?  If so, FIRST needs you!  FIRST is a fertility information research study for your women who are facing or have faced cancer treatment.  We want to know how different cancers and treatments affect the reproductive health of young survivors, whether you wish to have children in the future or not.  Participants will be asked to answer a women's health questionnaire on a yearly basis.  Interested?  Call the national fertility preservation hotline at 866-708-3378 (FERT) or email ayastudy@ucsd.edu!

Fertility & Parenthood After Cancer Study

We are conducting an online survey to find out more about young female cancer survivors’ reproductive health and their concerns and feelings toward fertility and parenthood now or in the future.

Who can join this study?

Young women between ages 15-35 who are cancer survivors diagnosed at least one year ago.

What happens if you choose to participate?

You will complete one 20 minute online survey.  You will be eligible for a $20 gift card after completing the survey.

For more information and to participate:

cancer.ucsd.edu/coping/fertility/Pages/studies.aspx#concerns

National CML Society Interview 2012

While I was at the OMG! 2012 Stupid Cancer summit I was interviewed by Greg Stephens at the National CML Society.

I figured I would share the posted interview on their web page and also direct anyone with CML to their site for further information.

http://www.nationalcmlsociety.org/omg2012

OMG! 2012 Stupid Cancer Young Adult Cancer Summit

I just returned from the OMG! 2012 Young Adult Cancer Summit put together by a group called Stupid Cancer (http://stupidcancer.com/). What an amazing experience! There were 550 registered young adults in all stages of cancer, as well as their caregivers there to listen to and discuss their daily reality.

Did you know 72,000 young adults are diagnosed with cancer every year? That number is staggering! Especially because it is seven times higher than all pediatric cancer diagnoses combined!

This summit was a way for young adults in all stages of cancer, as well as their care givers, to come together and learn about many topics as well as connect with eachother. Some of the topics discussed were self image, navigating careers, spirituality, self expression in a digital world, and the environment. The main message hit home for me was when the doctor says "you're cured, go home" that's not the end of the story. There are so many issues that don't go away just because someone might be in remission. I think many people forget this. The emotional scars last and so do the issues surrounding health insurance and self image (to name a couple).

One of my favorite connections of the weekend was with Johnny Imerman. Johnny is a young adult cancer survivor who started a group called Imerman Angels that matches people who are going through an illness with someone who has already gone through that very illness. Something they also do (which I found brilliant) is match family members and friends of people who are going through an illness to other family members and friends who have been through the journey. (http://www.imermanangels.org/)

I can't tell you how many people have come to me asking questions about all types of cancer and what they can do to help their family members going through treatment. I can give some basic suggestions, but when someone signs up with Imerman Angels they will be able to talk to a person with more specific suggestions. That's invaluable!

I honestly can not say enough about this conference. It is a fantastic and needed forum for young adults with cancer and their caregivers.

What about other illnesses? Other illnesses need support to.

I whole heartedly agree!

Check out http://www.nextstepnet.org/our-programs

This group works with young people with other life threatening illnesses such as HIV, and sickle cell disease.

Feel free to contact me if you need help researching support networks :)