Hi!
I was diagnosed with follicular non Hodgkin’s lymphoma 3 years ago at 57. I had an enlarged lymph node in my neck. For that particular diagnosis there is no treatment that is needed right away. The oncologist just arranges frequent blood tests and takes the watch and wait approach. It’s a slow growing cancer. However, after the first year I developed another type of cancer- Acute Lymphoblastic lymphoma (a lump on the roof of my mouth developed over night)- a very fast growing cancer. So I basically had 2 types of blood cancer. They treatment needed was very extreme chemo and after that I would need a BMT. This treatment took 2 years. I just got my BMT in January. I came through it without too much GVHD. I had some body aches that were pretty bad that lasted 1 week and some sores in my mouth that did not help with eating! I lost 30 pounds pretty much muscle. I was in the hospital for 5 weeks. When I got home I was extremely weak but so happy to be home and not hooked up to any IV machines. Freedom helps a lot in recovery. It’s a very long recovery that is hard on our loved ones. The reality for the patient is that it is a lifetime of recovery really- with the threat of relapse and GVHD always an issue. Just as I was feeling more energy and a returning appetite (in July) I developed some chronic GVHD issues. It started with my skin- I started to get spots that itched on my abdomen and back and eventually down my legs. I started putting tacrolimus ointment on them - after 4 weeks they have slightly faded and are no longer itchy. They haven’t gotten worse but they are still there. I stopped putting the ointment on. I also developed new mouth problems. I have really sore gums, dry mouth and little pimple like bumps that hurt like hell. Thus making eating and swallowing very difficult. I’m still on my immune suppressant drugs but next month I’m probably going to be weaned off them. I think with the kind of cancer that requires a BMT it’s difficult for the patient and family/friends to understand it’s a very hard and difficult road - physically and emotionally. As with other cancers you can go through surgery/chemo and be cancer free. But with a BMT it really is a lifetime of unknown. You can develop GVHD at anytime… even years down the road. I get a little irritated with my husband asking how I’m feeling- especially if I’m having a bad day. The worst is he wants to know I’m getting better so I’m constantly getting the question “how are you… any better?” I don’t want to think about that question every day. It’s so hard on those we care about and there really isn’t too much you can do. I think just acknowledging the fact that they have been dealt a very bad hand is all we need. Someday they will wake up with more happiness, energy, and Hope fore a future. Until then … lots of ice cream ❤️