Waiting

Thursday will be three weeks since I got "the news".  We are still waiting for a definite treatment plan.  I thought I would have started on either Sutent or Votrient last week, but both Dr Haas and I agree that we need more time and more information to decide for sure.

At the end of last week we sent several sets of MRI and CT scan reports and discs to Dr Uzzo, my 2012 surgeon, and are waiting for his recommendations. We expect he will not recommend surgery.

A new type of treatment for RCC, called "PD1" will be FDA approved in about a year, but I do not qualify for the clinical trials currently available.

I am also waiting for an appt at Lehigh Valley Hospital in Allentown to discuss a treatment they specialize in, called IL-2.  It is intense and, honestly, pretty scary.  Nicknamed "shake and bake," it involves admission to ICU for a week, with infusions every 8 hours for several days, until your body cannot take anymore doses.  Side effects include high fevers, low platelets etc.  Once you recover for a few days in ICU they send you home to rest for a week, and then you come back and they do it all over AGAIN.  Scans a few weeks later and if there is tumor shrinkage, they might even invite you back for another set!  FUN, FUN, FUN.

IL-2 has been around for at least 15-20 years so the results are well tested and documented, but it only offers a 5% chance of complete and long term remission.  Not great odds, but I have a lot of lifetime left if I can be cured, and so I am seriously considering it.  If it does not give me a complete remission it does sometimes at least provide a short term remission of a few years.  Then, I could try the other meds, PD1, or new treatments not yet available.   IL-2 also has been shown to improve the effectiveness of other treatments that follow it.  Maybe.  There are still some questions to be answered about my particular case before I even know if I will be accepted as a candidate for IL-2.  Please pray I can get those answers THIS WEEK.

So, I am facing some very difficult decisions.  God has given me peace during this time of waiting, which is pretty miraculous if you know me!  I have my moments of fear but I also have enough hope to be able to think clearly and research my options, in order to make as wise a decision as I can. 

Meanwhile we are trying to get the house and business as organized as we can, putting meals in the freezer, and trying to be as prepared as possible for the next steps, whatever they are. And I am spending a lot of time researching all I can about my options.

Thank you for the many cards and emails and posts, the offers of help, the hugs, the "we care about you" conversations, and some truly amazing generosity and love toward our family.  God is reassuring us that HE is with us, and He knows exactly what He is doing, even when we have no idea what the future holds.  Trying to "trust an unknown future to a known God." 

Love
Karen

Proverbs 3: 5-6
 Trust in the Lord with all your heart,
    and do not lean on your own understanding.
 In all your ways acknowledge Him,
    and He will direct your paths.