We all started focusing on a healthier lifestyle.. juicing daily, and taking extra vitamin C and D (in flu season) and probiotics. I have also started taking minimal doses of B17 (in the form of 3 apricot seeds daily) for the proposed anti-cancer properties.
And part of changes in lifestyle, I am overjoyed to actively be a part of Karolek starting school. I cannot tell you, I personally have shed more tears than our son as he starts school (actually he has surprised us and hasn't cried once and I have every hope that this will not change). Very emotional time for Konrad and I, seeing our baby start the school career, starting a new phase of life. This on top of the general September blues - end of summer, weather changing..
It is impossible to ignore the neck nodes which remain eerily present. Looks like a stable but partial remission is new term being used to describe where I am now. Luckly this doesnt really reflect how I feel, even I am fooled sometimes, because knock on wood, at this moment I feel very well. As many of you well know, I have been struggling with what to do ever since Washington, but only recently decided to opt out of transplant for now, with the doctos backing, and with good reason.
I will carry on with what is controlling disease for now (SGN-35). It feels like there is no right or easy path. Your patience with me is greatly appreciated, I have had a few friendly reminders to write more frequently.. And I appologize I have not, but its not always easy.
Good news that has come to all HL and ALCL patients out there since I last wrote is that SGN-35 was FDA approved on August 19, first drug for relapsed lymphomas to come to market in 30 years. Market name for Brentuximab vedotin (SGN-35) is Adcetris. They are still working out with Health Canada the 'special access' program to make the drug available to Canadians, so for now we have to continue going to Rochester for treatment every 21 days. But it looks like patients can soon get it here. What is strange is that it is already being provided in UK, and it feels like we are the last to get many of the clinical trial drugs out there today. No point in dwelling on this, but it does frustrate me to see that in some major aspects of health care we are so often really trailing far behind other parts of the world.. I am in the midst of appealing the OHIP decision not to pay for our out of country expenses that have been accumulating for awhile now, for a drug that is now 'accepted' in Canada.
On a much brighter note, this September has brought us our 6 year anniversary of marriage. And we rejoice, with the sun shining again these days :))
Much love and thanks to you for your constant concern and support and being part of our lives.
Happy Thanksgiving!
Paulina
