Original-ish "Living" List completed

When I initially created my "living" list, I kept adding things to it until I realized...hey, I better indicate what is new or old so that I actually can complete the list at some point.  The more you travel....the more cool places you discover you want to go to.  So, near the end of 2015, I put a cut-off  & indicated which places/things were newer to ensure that I knew when the original-ish list was done.  The last place I needed to get to was New Orleans. I'd been there before twice for very quick trips but never saw anything beyond the French Quarter and the inside of the Superdome. With my trip this week back to New Orleans, I have crossed the final thing off of that original-ish list which is below. (Please note that things were added randomly as I thought of them originally; so, they are not in  order of importance to me or completion.)

1.     New York/ Broadway Trip

2.     Clearwater Marine Aquarium to see Winter

3.     Alaska

4.     Key West

5.     England

6.     Ireland

7.     Greek Isles

8.     Bok Tower

9.     Tampa History Museum

10. Dali Museum

11. Amelia Island

12. See friends that I haven’t seen regularly/lately

13. PEI/ east coast of Canada

14. Las Vegas for Cirque shows

15. Bermuda

16. Grand Cayman

17. Belize

18. Maine/ East Coast of US

19. Hawaii to see other islands

20. Scotland

21. Morocco

22. St. Augustine

23. Gulf Beaches - Panama City/Destin,etc.

24. Discovery Cove or swim with dolphins elsewhere

25. Rainbow River in Dunnellon

26. Kennedy Space Center

27. Last few states – Vermont/New Hampshire

28. Last few states west – Wisconsin/North Dakota/Nebraska

29. Seattle

30. Aruba

31. Last few states - Delaware

32. Paris

33. Italy

34. Australia/ New Zealand

35. Spain

36. Niagara Falls

37. Zion National Park

38. New Orleans

39. Honduras

40. touch feet to Africa continent

41. Peru – Machu Picchu

42. San Antonio – back again as an adult

43. See Carrie Underwood in concert

44. See Reba McEntire in concert

45. Chicago in a time other than winter

        46.  Chihuly Museum St Pete

        47.  Amsterdam – Ann Frank’s House

        48. Harry potter world at Universal

        49.  Panama Canal    

        50. Iceland / Northern Lights

        51. Charleston, SC

        52.  St Thomas, VI

        53.  Puerto Rico

        54.  Canary Islands

        55. Go to CMA Fest

        56.  St. Maarten

The sad thing is that by now some of the ones like "seeing friends that haven't seen regularly /lately" probably need to be put back on the list again, lol.  My add-on list is now really 2 lists of various things to do/places to go outside of Florida  and things to do within Florida. Hopefully, I will have the "problem" of continuing to add things to my lists for a long time.

In other news, my liver enzymes have tripled on the new medication; so, we will be doing bloodwork next Wednesday to have the information for my appointment on Friday.  If they have risen again, we may have to lower the dose of the Afinitor.  There are 3 lower dosing options that would be a possibility.  Of course, I don't want my liver to have difficulty, but I definitely want to stay on these drugs in some form b/c of some recent testing that was done.  A sample of my tumor was sent to Foundation One which tests the tumor for genetic alterations that could possibly connect to targeted therapies. (Not sure if I'm using exact language, but this is basically how I understand it)  Of the 7 alterations that my tumor had, only one has any clinical trials or FDA approved drug therapies.  The one mutation  is mTOR & the Afinitor that I am on is the only mTOR inhibitor approved for use in breast cancer treatment.  So, in theory, this drug should work well for me.  I want to try to get as long as possible on it.   The benefit to knowing this information even for the other alterations is that if a future drug is in the pipeline we would have more confidence that it would work for me if it was connected to one of those alterations.

Tumor markers are only a guide not a definite indicator of what is occurring, but after only 8 days on this medicine, my tumor markers had reduced by a few points.   Hoping that we will see even more reduction next week.  If you would send good thoughts and prayers for this medicine to work and for the tumor markers and liver enzymes to come down substantially, I would appreciate it.  Meanwhile I'll just be over here researching the next thing/place to add to my living list so that I don't worry about what is going on with the blood tests, lol.

Nancy's no good, very bad day :)

Have you ever had a day that so many things went wrong that you just had to laugh?  That was my day yesterday.

The day started with a trip to the oncologist to check the progress of the new meds.  We can't tell yet if they are working, but it was more of a check up on the side effects.  This combo definitely has side effects, but they are not inhibiting.  Mouthsores are a common side effect which we are trying to prepare against b/c the drug impacts linings .  I do a steroid mouthwash 4 times a day to help prevent them, and I've found that I have to eat really bland.  Pretty much any spice or acidic food will cause my mouth to burn.  Thankfully, with the mouthwash and now a new topical given at yesterday's appointment, we have been able to keep them from becoming full-fledged sores.  The med also causes some nausea, but I've learned to eat about 1/2 of what I previously did and that keeps it more under control.  Neither of these have impeded my normal day to day activities. But, if you are eating with or cooking for me, please understand that I have to be super careful what I eat and/or how much I eat.   Now if these things will result in some weight loss, that would be grand, lol! :)

This part of the day was great until I showed them a small spot that I wanted them to check on.  I assumed it was the beginning of the rash that you can get from Afinitor and hoped it wasn't something like skin mets.   It was a strong no to both of those, thankfully, but instead, I got looked at by multiple people who think it might be shingles.  What?!?  I don't have any pain, thankfully, but I was told to watch it carefully and given meds to start if needed.  Apparently, a good place to get shingles is right where you had a mastectomy as the nerves aren't actually attached......just hoping it doesn't grow and get to somewhere that they are.  Actually, hoping it really isn't shingles!

Over the last few days, I'd had some problems with my water heater and cold showers really aren't my thing.  So, I had scheduled a plumber to come check it out after doing some looking online, etc.  The plumber was very nice and actually recommended a rebuild of the elements, etc. rather than a new one.  This was great as it was 1/3-1/2 the cost.  My water heater is short and on a platform over my dryer in my laundry room.  So, he goes to drain the tank......and the drain pipe breaks off in his hand.  There was water and silt spraying everywhere.  The shut off valve for the water was way up in the corner by the ceiling.  He calls for me to try to shut it off, and I can't reach it even on the ladder.  (Not really sure why he didn't turn the water off before starting but this would have still happened as it was water in the tank) He was trying to hold the water off, pretty unsuccessfully, but finally was able to climb the ladder and get it off.  Both of us were soaked through with silt all in our hair and all over everything in the laundry room.  Silly me, I had thought to remove a laundry basket on the floor that would be in his way but not all of the hanging clothes directly across from the water heater.

After using just about every towel in the house and a wet vac to clean up, the plumber got everything done, and I was on to the task of trying to rewash all of the clothes hanging in the laundry room that were now wet & covered in white flakes.  The washer had just filled with a load and water when I noticed a strange hissing sound coming from an outlet in the wall behind the clothes.  A quick search ensued of which breaker controlled that outlet (of course it is the same one as the now filled with clothes and water washer) along with a call to the association president and then electrician.  They believe it is just got wet and needs to dry out for 24 hours. If not, I'll be calling the electrician back this afternoon. At least my water is HOT now.......that poor hot water heater had been chugging along at half or less speed for quite a while apparently.

While all of this was going on, I also received an email from a student in an online class that concerned me greatly and needed immediate action for services and help. I just pray that the student will respond to the services provided and use the help as needed.

By the time all of this was done, I was done too....  There was grading needing to be done, but I couldn't concentrate at all.  Thankfully, I had dinner with a good friend, and I called it a day.  Here is hoping that your Thanksgiving Eve Eve was less eventful than mine, and that you can laugh at the end of whatever happens with your day.  Hope you have a wonderful Thanksgiving!

Decisions, decisions....

When I've talked to people over the last few days about the decisions regarding the new treatments, the common thread has been that they didn't realize that there was so much that had to go into the thought process.  So, I figured I'd share a little bit of that here now that my decision has been made, & really it was made for me which I'll explain later.  

When making decisions between two options in cancer treatment, there are a lot of grey areas when black and white options would be much easier.  You want to make sure that what you choose will work the best on your cancer but also impact your quality of life as little as possible.  The base medicine which suppresses estrogen, exemestane/ Aromasin,  was going to be the same in either possible option.   The possible trial option was going to be an immunotherapy drug, entinostat, and the option that has been around for longer, everolimus, is actually an immunosuppressant drug originally used to prevent organ rejection but has been found to help breast cancer when paired with a drug such as exemestane.  

Things to think about:

* Trials are not held at my cancer center so I would have to go to either the MLK or Brandon center adding about an hour total to each appointment & my on campus class times were built around the times that my dr is at my center; so, that could be more difficult.

*Trials sometimes have many more appointments b/c they are tracking everything

*I would not necessarily be seeing my doctor at all of those appointments

*Stage IV/ metastatic needs more research & that aspect is important to me

*Does the trial have a placebo arm for the 2nd drug? If so, oncologist won't let me on it because the progression free survival on the combo of drugs is twice that of the one drug alone

*The progression free survival median is about 1 month different based on research between the two combos - so not a huge factor either way

*Side effects are not substantially worse on either drug

BUT the big factor --

*If I don't take the trial drug now, I will lose it as an option in the future as it is only being tested with this one estrogen suppressing drug and only with those having never had the drug before. Unless trials start with another estrogen suppressing drug, it will not be in my arsenal to use.

So, I was weighing a lot of pros & cons, and once the decision is made, you have to just trust that it is the best one for you.  You can't look back and wonder "what if" because that does no good.   My gut kept saying go with the more tried & true exemestane & everolimus combo as it would be less disruptive on my life, but the "we need research" side of me felt pretty guilty about that.  So, I was really kind of hoping that the decision would be made for me and that the trial would not actually be an option for me due to placebo, etc.  

My doctor called yesterday afternoon, and my wish was granted.  The trial wasn't an option b/c of the possibility of getting a placebo and it was not being administered even at the MLK and Brandon centers.  The only location was 1 1/2 hours away which would not be feasible at this time.  So, I'm able to go with my gut feeling without any concern that another option might have been a better choice which is such a relief!   I should be getting the exemestane by tomorrow and will go ahead and start it. Once I get the other medicine from the specialty pharmacy I will add that in as well. 

Sorry this was a much longer post than I expected when I began writing, but hopefully, it will help people to understand all the many aspects that go into deciding which treatment route to take.  

Time for a Change

Due to my tumor markers being up this month, a PETscan was done on Wednesday morning, and my oncologist called Thursday afternoon with the results.   What she told me on the phone was that things looked a little worse near the liver which indicated that the medicine was not working.  She asked if I could come in on Friday morning at 8 AM to discuss some options and review further the scan.

Mom came with me to the appointment on Friday. When we reviewed the scan with the oncologist, we were able to see that things had progressed some with the lymph nodes near the liver glowing brighter and a little bigger. While it wasn't possible to tell exactly how many nodes were involved, it was still a small number. Also, it has not spread beyond that basic area of nodes that it has already been in.  There also was a spot glowing brighter in the liver which has come & gone some over the last year, but the good thing is that there was not a defined mass.  Basically, for having some progression, this was about the best case scenario possible.  My oncologist does believe that even with a small amount of progression, it is best to go ahead and change medication to avoid it becoming more which I really appreciate.

A couple of visits ago, I had asked what the next step was likely to be, and the physician's assistant said it would probably be a more traditional chemo in pill form.  Thankfully, since it is such a small progression, we are able to avoid that and stay with an endocrine therapy that attacks the hormones.  We will definitely be using a pill form of that know as exemestane or Aromasin.  My oncologist wants us to pair a second medicine with it that will help keep cells from dividing.  The options are either everolimus/Afinitor or going on a clinical trial with the drug entinostat. She was waiting for more information on the trial as to whether they were still adding people and/or whether there was a placebo arm to the trial.  She only wants that as an option if I would definitely be getting the 2nd drug; if there is any chance I would get a placebo, that option is off the table.

My oncologist told me to think about the options and that she would call me later in the day after she heard back from the trial.  Oddly, I didn't hear from her last night; so, I have to assume she didn't hear back from the trial yet.  My oncologist has called even at 6:45 on a Friday night before to make sure that I had information.  There are a lot of things to think about in regards to which option to take, but I'm so thankful that there are options like this.  Every drug has side effects of course (even a benadryl), but these options should have little impact on my life and being able to work, travel, etc. The big goal is still to get back to No Evidence of Disease or if not that, to stay as stable as possible with regression preferable.

I would really appreciate your good thoughts and prayers to make the best decision for me on the options for medicine and that whatever is chosen will work as well as possible.  Thanks so much!