Good news - bad news - seesaw

Helen

while I can't answer your questions, I'd like to wish you well for the next scan and in fighting this illness. Hope something works and you can put it all behind you very soon! best wishes, diya

Oh Helen - I have been hoping you were out doing fun things

I am so sorry to see this.  I also tend to stay away from the boards when there is alot going on with me and the last 60 days have been tough.  I am considered platinum resistant with progression through taxol/carbo, doxil and now Avastin (after many treatments). l

My early April scan showed growth in all of my mets but no new mets.  This after 12 rounds of Avastin which had held things at bay for me for quite awhile and was very easy to tolerate.  I did get nosebleeds, gum bleeds, bruised easily and my blood pressure elevated some but has always been low so I had room on that.  I worked fulltime (50 ish hours per week) and continued to ride Cisco 2 to 3 times per week.  My CA125 bounced up and down like crazy while I was on Avastin and I had four sets of scans during that time with stability until early April.

So due to the new growth I started the cleanse process to enter clinical trials and the search for trials - we met with City of Hope, USC - Norris and Cedars Sinai's research teams with the focus on not only my cancer history but my genome test results.  USC found 2 trials targeting some mutations I carry but they were full.  Cedars found 2 and applied for a 3rd one as an exception which was denied.  In the meantime I had my first ever gallbladder attack so had to undergo more scans which identified significant growth in my mets plus a new one on my liver (2.2X1.8CM) and three other "spots" in addition to a blocked utereter.  I had surgery earlier this week to remove the gallbladder, insert a stent to unblock the ureter and biopsy the new met.  It has been crazy!

I meet with Cedars next week to start the enrollment process for one of two trials they got me accepted into - YAY.  What I want to share with you is the Avastin is manageable and if for some reason it doesn't work -and it should for at least awhile - there are other options out there.  My doctors have told me their goal now isnt' NED but stability.  And to string together a series of effective treatments to keep things stable.  I know how overwhelming this all is and how lonely this journey can feel but want you to know there are options.  I am going to take a leave from work and add yoga to my routine.  Be kind to yourself and gentle with yourself.  PM me any questions.  Sending hugs and prayers - Anne   

daylady said:

Thanks so much for your

Thanks so much for your thoughts and experience Anne.  I am basically positive and have a strong belief system, but there are those moments....  I will send lots of prayers that you get accepted into the trial.  I'll check in after my next set of tests (on the 29th) and let you know how it goes. Hugs backatcha , Helen

Thinking about you, Helen and Anne

Helen and Anne, I just want you both to know that my prayers and thoughts are with you.  I am hoping to hear good news regarding your tests after the 29th, Helen, and that you will be able to attend your 50th high school reunion, full head of hair and all!   Anne, I am glad to hear that you have been accepted into a clinical trial.  That is wonderful news!  Keep riding Cisco and enjoying your life.  Are you planning to return to your job after your leave of absence?  I keep toying with the idea of retiring.  COBRA would cost me a little less than $700.00 monthly and, although I can afford this expense, it just seems rather extravagant to me.  If I quit my job now, COBRA availability would run out in 18 months, which for me would be about a year shy of reaching the Medicare age of 65.  So,  I just keep plugging along and wishing for the best.

Hugs,

Cathy

daylady said:

to retire or not to retire...

Hi Cathy, thanks so much for your thoughts.  I'll keep everyone posted regarding my next results.  WRT retirement, think it all through carefully.  It sounds like you are somewhere around 62 now.  There is definitely a financial hit from Social Security` if you retire early, can you really afford that?  Also, if you are going to have to pick up Medical out of pocket for a year, as an individual instead of part of a group plan, the cost could be significantly higher especially with a cancer history.  I "stepped away" from the front line at our company (I am CEO/owner) and am semi-retired but still on the payroll until I reach 66.  I have gone on Medicare plus Kaiser Senior Advantage and it was pretty seamless.  I think for all of us, insurance is pretty darn important.  I got the invoice recently on my Avastin infusions....they are $22,000 each!!  The shock alone nearly killed me.  They are required to send a statement even though my co-pay is very small.  I really worry about people who don't have insurance to cover these things.  If you can hang in there for the last couple of years and your job is not too stressful, do it!  The peace of mind of knowing that you are covered should something unexpected happen is really worth it.  Just my two cents....  Take good care.  - Hugs backatcha, Helen

Thanks, Helen, for your sage advice!

I seem to be in a holding pattern when it comes to retirement.  On the one hand, I continue to do as I had planned prior to my cancer diagnosis, that is, to work with the plan of retiring at age 65 or 66.  On the other hand, I am aware that at 62.5-years-old, I don't know if my health will remain good enough to continue to work until age 65 or 66.  I realize that I cannot go without decent health insurance, not even for one day, especially not with a cancer diagnosis.  I suppose that if my cancer spreads distantly, I will then consider applying for Social Security Disability Income (SSDI).  Under the Social Security compassionate allowances, I would be approved quickly with a distant metastasis (lungs, liver, brain).  I am not certain, but I also think that for Medicare purposes, Social Security would consider the two-year start date as the date in which I received my cancer diagnosis (10/14/13) and not the date that I applied for SSDI.  . So let's say that I apply for SSDI in November, 2015 and receive it.  I would also-I think- receive Medicare as more than two years have gone by since my cancer diagnosis.    If anyone knows the answer to this, please let me know.

Warm wishes to all and have a great day!

Cathy