Good news - bad news - seesaw

daylady
daylady Member Posts: 122
in Uterine/Endometrial Cancer #1

Hello ladies!  I have been absent for awhile because I just needed a mental break from thinking, reading, living cancer.  2014 was hard ...diagnosis, major surgery, radiation, chemo.  Then a very short reprieve before discovering a recurrence in Dec. 2014, so started chemo again this January.  Started out with Doxil and was thrilled not to have to lose my hair, but the side effects were the worst Kaiser had ever seen and literally brought me to my knees.  Unfortunately a CT scan at that point showed treatment had been working, enlarged nodes shrinking, so it was disappointing to walk away. My CA 125 was 17 at that point.    A two months hiatus to allow my body to heal, during which my CA125 shot from 17 to 53. Darn. Started on Avistan and after the first two treatments, my CA 125 dropped to 16 and I was thrilled!!!  But just three weeks later, my 3 month CT Scan is showing "mixed results" with some nodes decreasing and a few increasing, and a tiny new lesion on my liver which is too small to identify but is "suspicious".  In the same three weeks, my CA 125 has jumped to 30, a huge worry for me.  My oncologist says they are not recommending a change in treatment with a CA 125 of 30 and a "stable" CT Scan, so I am just doing my best to keep puting one foot in front of the other and trying not to get the cart before the horse in terms of worrying.  

My husband and I ended up having to cancel a trip to Hawaii, a cruise to Panama, two trips to the lake, and a convention this last year.  We finally decided to take a leap of faith and make plans for this fall but I have a feeling treatment will change (yet again) and I will be facing our 50th high school reunion bald and feeling lousy.  So today....I'm really a little low.  I'm beginning to feel strongly that I may be chemo resistent as any success I have had seems to be shorter and shorter lived.  Is anyone willing to share with me what their long term experience with Avastin has been? 

I am working with a (WONDERFUL) naturopathic oncologist (who is also a Board certified oncologist, kind of a rare animal) and she has me taking all kinds of suppements to build/maintain my immune system and I actually feel great.  I have never really had any symptoms from the cancer, and except for Doxil, have not had any side effects from chemo.  It just doesn't seem to work.  My naturopathic ocologist recently had me start taking Helixor (European mistletoe) injections as they help your immune system fight the cancer. It's not available in the US so I get it out of Canada.  Has been used in Europe and most other countries for years.  A little hard to understand why we can't get it here.  I walk 5 miles a day,   have lost 50 pounds in the last year and a half, follow a very clean, organic (tho not vegan) diet of mostly fresh veggies, fruit, wild caught fish and organic checken.   Have started a mindful meditation class.  Honestly don't know what else I could be doing in my own behalf.

My next CA 125 is July 29 and given the results I've had this week, I'm worried about what is coming next.  I know you have all been there, and some through so much worse it literally humbles me to be complaining.  Just not a whole lot of places to go.....  Hoping all is well with each and every one of you (and would love to hear about anyone's experience with Avastin, or what anyone has done who turned out to be "chemo resistent").  - Helen

Comments

  • Diya
    Diya Member Posts: 93
    #2
    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

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #3
    Helen,
    I cannot offer any

    Helen,

    I cannot offer any experience, either, but sure wish you could catch a break. The rollercoaster you have endured is exactly why I often take long breaks from the board. It is hard to hear!

    It sounds like you have done everything possible to get yourself in optimal health, but cancer is such an unfair, sneaky ****! I hope your hard work pays off...your weight loss is incredible...and you can move on without anymore setbacks.

    Best of luck!

    Kathy

  • AWK
    AWK Member Posts: 364 Member
    #4
    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
    daylady Member Posts: 122
    #5
    AWK said:

    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   

    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

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #6
    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
    daylady Member Posts: 122
    #7
    Abbycat2 said:

    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

    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

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #8
    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

     

      

  • molimoli
    molimoli Member Posts: 514
    #9
    Thanks for updating ,you've been in my thoughts a lot.

    Hi Helen , I have wondered how you are ,wanted to send a private message but didn't want to remind you of cancer in the event that you were taking a break from it. You and I relapsed around the same time and choosed  different routes  re: treatments. Sorry to hear that Doxil was so rough on you,I hope the doctors will hurry up and find something that works without the godawful shock to the system.For you Doxil was the  worse, in terms of what? please share if you are up to it ,

    For me I am at a point of seeking other opinions and other options for treatment. So far the 2 masses that are in my pelvis grew to more than double since found Jan. however I am thankful that up to last month they remained the only 2 ,I am not panicking about them growing where they are ( this same ole pelvis held babies  3 times each weighing over 7 lbs)  but hoping that they don't affect  neighboring  organs. and no new mets are found ( pipe dream but a dream anyway) until I find a way to put the brakes to them, I really think I will. I will continue sharing .  Stay strong  and same to your husband, beautiful pic. saying a thousand words ,some of them seem to be  saying ' lean on me I am in your corner and watching your back' , Awsome message. Take care of each other.

    Moli

     

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