Honoring cancer survivorship: Share your voice this May

So grateful to be a survivor ! My case was fortunately not a long saga, though it was scary at the beginning…all I knew for a few weeks was that my colon tumor was growing very fast, T4…so I used the time to make sure my legal/financial affairs were in order, actually a useful distraction….after many tests, it was determined that my mutations, dMMR, etc. qualified me for immunotherapy. Docs all clear that shrinking the tumor before surgery was the best plan…turns out that the immunotherapy worked very well (it was very well planned)…no lymph involvement or mets (lucky !)…within less than 5 months I was declared NED and rang the bell at NYPresbyterian…currently on follow-up schedule… it didn’t happen without a few rough patches, but quite moderate by most measures…my team were very responsive, a big plus ! From my hospital bed, observing cases right around me, I vowed I would do everything I could to help other patients, as I thought survivor guilt was not my path…I’ve participated in research projects, prepping docs using my case for papers, been on sites like this one (to learn as well as share), and now helping a friend during her cancer journey… I am so grateful to my docs and supporters, and for sheer good luck. Wishing everyone all the best as they face cancer—learning to live with the uncertainty of our futures can be very challenging, but if we remember to always count our ‘’wins’’, small as well as large, we will do better.

I am a survivor of leukemia ALL diagnosed in 2007 with a stem cell transplant same year. This year will be my 19th year post transplant. I was in bad shape when I went to the ER thinking I was having a heart attack. Incredibly low red blood cell count was depleting my body of oxygen. Kudos to KU (Kansas University) BMT unit that saved my life . Recovery was long and difficult, however, I have done well thus far. For all those folks out there suffering- I want to give you hope. I was 47 when this happened- now 65.

Hi @lorishoe Wow, Congratulations on your 19th year post BMT! This is such an encouraging post to those of us with more recent BMTs. I’m coming up on 7 years the end of June for AML. (I was 65 at the time). Not a newbie but still love to hear stories of long time survivors!
So thank you for sharing your story about ALL (Acute Lymphoblastic leukemia) and your subsequent bone marrow transplant. Nineteen years ago it was still a relatively new procedure. Cutting edge of science! Did you have any issues with GVHD?

@loribmt yes I had GVHD in my stomach and was on high dose steroid for a while. The steroids made me diabetic and I had to track my blood sugar and give myself insulin shots. Once I tapered off the steroids my blood levels returned to normal. I think I was on the steroids for maybe a couple of months? time frames are fuzzy for me to remember

Hi @lorishoe There have been numerous changes in post transplant care to prevent gvhd since you and I had our BMTs. There is another drug added post transplant which can help reduce the development and/or the worst of the symptoms. It became available for that application a couple of years after my transplant. Not every transplant facility has it in their protocol yet but it’s becoming standard in larger teaching/research clinics. Of course there are no guarantees and we do need some gvhd or I guess we can call it graft vs leukemia reaction to make sure it’s doing the job!

I’m glad your experience with gvhd was managed well with steroids and you’ve recovered from all the side effects. Who was your donor? Were you ever able to meet the person or correspond?

@loribmt Thanks for the info. I remember taking a medication that was supposed to prevent GVHD - but like you said- nothing is guaranteed- especially with such a risky process. My donor was my biological brother. We were a 10/10 match. My sister was not a good match at all. Funny how biological siblings can be so different. My brother is 8 years older than myself.

Surviving cancer can be challenging, but with the right support, it can be accomplished! After three surgeries for upper digestive tract cancer, I have found family and friends to be a great emotional support.

My medical team, including surgeons, registered dieticians, and pelvic floor therapists, has all been instrumental in supporting a new lifestyle of eating and dealing with the effects of digestive tract cancer. I am thankful for them all!