So much has happened since the last post, essentially since receiving the 5th round of SGN-35. The day of that treatment, we got home and my neck lymph nodes were swollen, along with a sore throat and difficulty swallowing. Normally, one wouldn't think too much of this (Konrad also had similar symptoms from changes in temperatures, extreme humidity outside and air conditioning everywhere else); but with me
red flags were immediately raised. CT scans, blood work, restaging. I am trying not to look too much at any of this (though its hard), and be cautiously optimistic that it will just pass.
Antibiotics started shortly after round 5 helped to shrink these lymph nodes (and take away the sore throat I had along with it), however a week later they popped up again :( I am now back on the amoxicillin and will remain on it likely right up until the next treatment. We were in Rochester last Thursday Aug 11 and luckily got round 6 of treatment, however with a warning that I will not receive round 7 in 2 weeks, if the node swelling is not resolved by then.
Dilemma strikes again. We wait and see, and I am in the process of trying to get around the treatment maze we unfortunately have in Canada, bending over backwards in trying to arrange for back-up treatment (proposed drugs are Romidepsin and Pralatrexate). They are FDA approved but only available in US, and not being insured for medical expenses out of country makes it impossible to afford Romidepsin for example, costing $10,000 USD weekly for drug cost alone. Sadly, the patient is left with researching into ways to get around this. Will update on progress. All I can say is without the strength I gained up until the fifth round I would not even be able to do so.
We are still hopeful that this will resolve, and continuing on SGN-35 with a remission will keep the door open for an allo (donor) transplant.
We are being seen at
National Institutes of Health (NIH) in Bathesda near Washington this Tuesday August 23rd :) They may also propose alternate treatment if in fact needed in 2 weeks time for conditioning to get into a trial they have there specializing in allo stem cell transplant (sct) after failed auto-sct. I am very thankful to have been referred for consideration there, since being enrolled in one of their trials could mean having the transplant done on NIH funding. A huge deal, especially considering there are no programs available for me to do this procedure here in Canada. We leave tomorrow morning, 10 hour drive ahead of us, but we are happy to have this opportunity so will make the very best of this trip.
Besides all this craziness, we're just continuing on with the new 'normal' we call everyday life. We have been trying to meet with people whenever we get the chance, and have enjoyed visits with some friends whom we havent seen in far too long, how refreshing and warm a feeling that brings. Happily enjoying the summer, and breathing in the fresh cooler air up north most weekends with our family.
We watched the Cars 2 movie that I've been looking forward to seeing ever since I was in hospital back in January and heard its coming out. Karolek spent his two-s and three-s were living and loving CARS. This kid has a McQueen toddler bed he sleeps in to this day, and was Mater for his third Halloween. Happy to report his love for the movie and characters is reborn :) (though we thought it was disappointingly not as good as the first).
We also had a fabulous time at our friends Kat and Carl's long-awaited wedding yesterday! We were delighted to be part of it, and dance the night away in great company, family and friends all with a unique dress code: ladies in pink, men in black - so fun and unique. Thank you for a great time!
We hope summer has been good to all of you, that you've found the time to sit back and relax, and take in the moment.
Paulina
