Today is day one cycle 6…. Peter is halfway through his 12 month clinical trial!! It’s been a bit of a moving target kind of trial… we have learned so much since the start. The science is astounding, encouraging and scary all wrapped into one. So far there is no cure for the CLL that Peter fights.. there is at present just maintenance, aka, holding it at bay. When it roars, the Dr’s beat it down, and then you just test until it roars again. This is the insidious nature of this Chronic disease… for now. Science & research continue to move forward though, and we have no doubt that there will be a cure found soon!!
When Peter began this trial it was a journey through fear and the unknown. He knew without a doubt that chemo would not be an option for him. Luckily, we asked for a second opinion… and ended up landing in front of a doctor who strongly felt the same. For CLL chemo is not the answer… it angers the cancer cells (after wiping out healthy cells too) into mutations. This cutting edge immune therapy that Peter is on is truly mind blowing, however it has been quite a journey!! His trial was a 2 drug combination therapy, an infusion that attaches to only the cancer cells (and systematically kills only the malignant ones), and the pill activates the natural killer cells to just keep attacking and killing. As I wrote before, Peter’s numbers look fantastic, however he was feeling worse and worse. There was a very scary dark time for us both this winter. His flulike symptoms were making daily life become a journey from bed to couch, foggy head, drastic shortness of breath (so much so that talking became challenging at times from the sheer monumental effort of it). After many tests (which all came back clear), the decision was made by his doctor to take him off the daily pill. It was amazing how quickly he improved!! Within a few days his energy increased, shortness of breath disappeared, and one by one the flulike symptoms also went away. I saw my husband return… awesome!!!! Then the journey changed into, now what…. The clinical trial he is on is composed of the 2 drug combo, if he can’t take one what did that mean?? Well, there is always a bit of hurry up and wait with these things, which also meant “ just to make sure “ he had to begin taking the pill again after a 21 day break. If he reacted again he might be out of the clinical trial… but his blood work looked so good… and then maybe he would be fine. Well 3 days in and he immediately started going downhill again. That answered that. His body evidently does not tolerate the chemical make up of the pill at all. We had heard he may be out of the trial and have no treatment till his numbers got really bad again, maybe they would have to look for another trial to put him in… but as luck would have it, his awesome doctor presented his case and he will be allowed to continue on just the infusion for the second half of the trial. Hallelujah!!!
Since Peter has been off the daily pill his energy has improved so much!!! He has been able to work again, and enjoy life again. His numbers look great!!! His doctor came in to talk with us this morning. He is very optimistic about Peter’s future. He will complete this trial, and then we will keep tabs on him until he needs treatment again. The good news is that there are several other drugs with great promise out and being used now and many more in the pipeline to come. The research in this area is moving steadily forward. His doctor told us from day one that treating CLL with chemo was on the way out .. and it appears to be headed in that direction for sure. Immunotherapy is just huge!!! As far as the conspiracy theory that there is a cure for cancer that already exists and isn’t being used because of doctors and money…I want to say just stop it right now!!! Research is so quickly moving forward!!! Research and testing is done all the way down to a genetic level… where the cures are now being developed from. The mutations that occur during cell division make the research a constantly moving target. There are many reasons why cancer develops, but one of the first things that happens is that the immune system breaks down and becomes unable to recognize irregular cells… by helping the immune system, we are getting closer to finding the cure. I believe without a doubt the cure will emerge in the near future!!! We are so grateful to be here at such a great place where this research is happening!!! Peter is now halfway through treatment and feeling better!!!! We are so filled with gratitude our hearts are bursting!!!

One thought on “Gratitude

  1. Kathleen

    Thanks for the update, Heather. God is answering prayer (which is REALLY encouraging to me to pray even more!) and giving wisdom to the doctors and to you both, as well as hope in those uncertain periods. I praise God for all of that and for Peter’s ability to put in a full week of work…to be able to enjoy his photography and go out with friends for a meal…to talk, laugh, and love. I thank God for your deep, loving partnership with my dear brother. SO many blessings to give God the glory for. He is in control, hallelujah indeed!!! 🙂


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