Dear Friends....

    I would truly VALUE your sincere and honest opinion on this  new drug treatment that my Oncologist wants me to start on as soon as I finish my Radiation!  

http://www.opdivohcp.bmscustomerconnect.com/metastatic-nsclc

       It would be the next course of "treatment" for me after the Radiation and would start pretty much right after we get back from Cali. I have read a lot of about it and sadly because it is SO new, there is NOT a lot to read or even a lot of data to look at. It has ONLY been approved by the FDA for a month and that as an accelerated approval...and out of the 500 (clinical trial patients) very few were women or my age...UGH! On top of the that long term prognosis with this drug, MAY only only prolong life for a few months (at best)....and that is ONLY if it works and I am not hit with one of the SEVERAL severe side effects. It can totally wreak havoc on my Immune System and that could potential kill me faster and has in some patients who were treated with this drug. I am pretty devastated to know this is pretty much IT for me and I'm not at all happy with the risks, in my opinion they are far to great and right now I'm about 99.9% certain this is NOT a treatment I will have! I need a TRUE Miracle now...and one that does not potentially take my life even sooner, or make me so immune comprised that I have to spend time in a "bubble" to avoid getting sick. Despite having been sick with chronic illness for the last 15+ years, I've NEVER been one who likes or even wants to take meds..HATE them and would give anything to never have to take any ever again...but in some cases they are best and have helped me greatly. This one...SCARES me big time...and brings me to the time when I feel that I must start to think about QUALITY of life over quantity. I still WANT very much to go out to San Diego for a MONTH this Winter and I want and HOPE my BFF"s will ALL come out and stay with me and help me out! If I start this drug, I will not likely be able ot go or possible ever travel again and I am NOT ready to give that up! If you have time...please read about this drug and PLEASE share your HONEST opinion....not for me...but put yourself in my place....IF you were ME....would you even consider it? Feel free to PM or email me privately! 

Love you all!

XOXO Lisa

The next steps for me...

Posted from Facebook....

   Tuesday afternoon---I guess you might say that I'm very lucky in that respect. It's an Immunotherapy like med and is given via IV, much like Chemo. Apparently the Chemo did NOT work for me and is why my tumor is back and growing faster! Pretty much this is the ONLY hope I have right now ...so PLEASE pray that it will work and the Radiation will help shrink the tumor too! It is pretty upsetting to realize just how deadly this illness can be, especially when the tumors do NOT respond to the Chemo. This drug has been FDA Approved for advanced Melanoma since March and there is a lot of data that shows it can work well. However, with it being such new drug, despite the positive clinical trials, there is just NOT a lot of data or research available. My oncologist, feels it (based on the trails and her research) that it can work well and she has been involved in many of the studies. She was thrilled when it did receive the FDA approval last month. Had it not been approved, I likely would not have been fortunate enough to have the chance to try it..so I am happy about that! Even so, this is a lot to absorb and has made me know realize that my cancer is far more advanced than I knew (or wanted to accept) UGH!

   Update:  I started my Radiation, Tuesday afternoon, that the set up done, the "tattoos" and so forth, the first treatment is on Sacredness and I'll have TEN in a row before we leave for SD.  I'm being "Radiated"at a higher dose, so that I'll get faster results with less treatments.  

   HOPING....and taking one day and on moment at a time...

Lots to do today!!

  By the end of the day, I'll know what my new treatment plan is and exactly when I start and what my long term prognosis is.

   I have an appointment with my local Oncologist at 9;40 am to once again review my CT scans for for her to tell me with the team has decided is the best plan of treatment.  Then later this afteroon, Hubby thankfully will be home and will take my to my first appointment up at the hospital where I will have my Radiation.  I believe today, will be the set-up to get me ready and to determine the sites and such of where there will pinpoint the beam.  From what I have learned, I will have little marks (tattoos) put on me, which is aid in the how they set up the machine each day.   I have wanted to get a nice little "pretty" tattoo for months, but this was NOT what I had in mind!  LOL!

   For now I'm doing my very best to take one moment at a time and do HOPE that once I begin the treatments I will start to eel better.  The nausea is awful and I now it's not from my Chemo, but likely the Cancer and/or from the major change I have had in vision.  My new "Trial" contact lenses are in and I'll be picking those up this morning and HOPE it's the help I need.   This is a huge change from when my vision was checked and I ordered new contacts just five weeks ago.  The good news is that we know it's not from a brain tumor, as that CT Scan was fine - Thank Goodness and I've been told that Chemo or just having cancer can change your vision and that this is NOT uncommon.  I'm also being referred to an eye Doc affiliated with Mass Eye and Ear, but need to know all my Radiation appointment times, so I can call and schedule that visit.  Luckily, this doctor is only a five minute drive from where I will have my Radiation, so I hope to get in ASAP and should be able to call and set it up tomorrow.

    Yesterday, I was so touched by a wonderful "Kindness" package that Jennifer McGuire sent to me.  If you do not know here, she is a top designer in the craft industry and has become a dear friend to me.  I was so happy to see her when I attended the Simon Says Stamp Create event in October and am touched by her wonderful new Kindness campaign, which you can read about on her blog HERE

!

   This week is all about sharing Handmade Kindness with your Community, so today I'm bringing a big bag of "treats" up to the Oncology Unit and I also made them a new card to show my appreciate for how much all those gals and Dr. Sunkara mean to me.  They are some of the most caring people I have ever met and I do feel very blessed that this unit is in my home town.  Now, if ONLY they could do Radiation local..that would be heavenly!  But. I will have to make the 25 minute drive and grin and bear it every day!  Something I am NOT at all looking froward too!

   Hope you all have a wonderful week and HOPE you'll all consider joining in on Jennifer's Kindness Campaign, which was designed to benefit the Kind Campaign..an amazing non profit group put together to help share more awareness on "Bullying".  This group ROCKS...and I was happy to donate to them last week..maybe you can too!!

   Update:  One appointment done and one to go! I will be starting Radiation immediately and mine will be given a higher dose (so that I can get in 10 treatments) before we leave for Cali. As soon as I get back, I will then start on a brand new FDA Approved drug for late stage small cell lung cancer, that is called Nivolumab. It is a drug that I had learned about (when it was in clinical trials) from the Dana Farber Cancer Team (back in April). It just rec'd the FDA Approval in October, so I guess you might say that I'm very lucky in that respect. It's an Immunotherapy like med and is given via IV, much like Chemo. Apparently the Chemo did NOT work for me and is why my tumor is back and growing faster! Pretty much this is the ONLY hope I have right now ...so PLEASE pray that it will work and the Radiation will help shrink the tumor too! It is pretty upsetting to realize just how deadly this illness can be, especially when the tumors do NOT respond to the Chemo. This drug has been FDA Approved for advanced Melanoma since March and there is a lot of data that shows it can work well. However, with it being such new drug, despite the positive clinical trials, there is just NOT a lot of data or research available. My oncologist, feels it (based on the trails and her research) that it can work well and she has been involved in many of the studies. She was thrilled when it did receive the FDA approval last month. Had it not been approved, I likely would not have been fortunate enough to have the chance to try it..so I am happy about that! Even so, this is a lot to absorb and has made me know realize that my cancer is far more advanced than I knew (or wanted to accept) UGH!

Bad News...

 My cancer is back!!!  And as much as I was concerned it would be, it still was so upsetting to her that news today!   The tumor is my lung is larger and grew fast, despite the chemo that I never stopped.  I start Radiation asap, my docs will consult tomorrow and let me know..it will likely be next week.

 I am still going to Cali for Thanksgiving an would NEVER ever give up that trip...I asked if I could start after, but they say I need to go ASAP to save my life.   I'm so depressed and scared but I'll do what they want for now..but will not give up my live to be in a treatment or the hospital every day..if if comes to that...I want some quality of life and to do things on my "bucket list" while I can.

  Please keep me in your thoughts...I'm feel very defeated right now ..and pray for all those that deal with this nasty illness!

Thanks for ALL the love and support!

Scared???

Okay, no NOW I am Scared!!!

    I saw my Oncologist this morning for my typical "pre chemo" appointment, at which time I expressed my concern over being so sick all the time!  I told her her that I have been nauseous a LOT more lately and that I rarely have any good days!  I am SO thankful for those I do have and luckily I felt good when I went out to CREATE.   I was pretty sick on my flight home, but it was a short one and I came home and went to bed! In the past few weeks, I've had some more vision changes in my left eye (I saw my eye doc a few weeks ago and my contact RX changed, but I'm still have issues with one eye).   NOTE: I did NOT have this happen when I had my brain tumor and I do NOT have any of the Symptoms I had then! (Thank Goodness) ----------- 

    I told her I was a bit concerned about my upcoming CT scan and she told me, that she thinks it would be wise to add a Brain CT Scan too, and that would be booked with my others on the 16th!! She did tell me to try NOT worry, that based on my "last" blood work, all looked good and that there would typically be some changes that would trigger her to be concerned! She does feel that I may likely have Gastritis due to the meds and that I must try to eat breakfast first from now one and to increase my Prilosec dose.  I've never been good about breakfast..don't care for food in the early AM and by the time I do feel like eating, it's often closer to lunch..but I promised to try harder and she is also have the Nutritionist come up and meet with me at my Chemo appointment tomorrow! I will try, but UGH..putting food in my stomach, in the morning makes me feel yuk...and when I already feed YUK, it's even harder! But, I promise to try harder and take my meds later........ 

    NOW -- (later in the afternoon), I received a phone call from Oncology and they have pushed up ALL the CT Scans for tomorrow, even BEFORE my Chemo.  I now have to been there at 8:15 and typically my Mom drives me, since I need to take Meds to deal with the CT Scans...!  She is not home and is away (BTW she does not know this, so if you do happen to talk to her before me...PLEASE do not share this, for now)....But, they said, just to take my Ativan right before I leave and take the second i have my "drink" in Radiology, which is brutal...tastes absolutely horrible. I then have a new Brain CT Scan and a Lung/Abdomen Scan"...after that I'll to up to the floor and have my Chemo and by the time that's done, the Ativan will be worn off, so I'll be safe to drive home! As I have been finally "confessing" to friends and family...I am MORE worried than ever and PRAY to God that this cancer has not spread into my Stomach or GI area and is the reason, I'm sick all the time! PLEASE if you have a minute, think of me and think GOOD thoughts, for those of you who believe in Prayer (I sure do), I ask for extra prayers.  

    I have already been devastated by this illness and LOVED the three months that I had in Remission....! HOPING these new CT scan come back just a well promising as those did!  Love you and LOVE that you ALL have been such wonderful supporters! No matter what, I'm still going to San Diego for Thanksgiving and would NEVER change that now.  My next chemo is scheduled  for the first week in December and that's how it shall stay!   I'm SCARED...and not afraid to admit it!

   Thanks for listening and thanks for Caring!