Disappointing PET scan

Editgrl
Editgrl Member Posts: 903

Hi, ladies.

I haven't been very active on the board lately, trying to resume a somewhat normal life after Germany and hoping for good results from my scan.

Unfortunately, the scan results were not great. Three weeks ago I had my scheduled scan and while the good news is that the cancer has not spread to my liver, pancreas, gallbladder, stomach, etc. I have a lot of new lymph nodes lighting up, and now have a couple of palpable enlarged nodes in the neck area.  There are some new nodules in my lungs.

I had a liquid biopsy done which showed only a few genomic mutations, but finally, there is some evidence that metformin may work for me.  I will be going on that in the next few days.

In addition, I am having one of the lymph nodes removed in a couple of weeks, sooner if there is a cancellation in the OR, and it will be sent down to the Nagourney Cancer Institute in Long Beach.  Thanks to derMaus for bringing this to my attention. There it will be tested against a number of agents to see which ones the cancer is sensitive to.  That way, in what may be another round of chemo, we will be using drugs that are shown to be effective against this particular cancer.  I am not sure why this sort of testing is not done as a standard of care.  Money, probably. It strikes me as something that probably should be standard procedure, especially with cancers like some of ours that have no established protocol, especially when they recur. Kaiser will not cover the expense, but my medical oncologist there is willing to use the information generated to make a plan.

I am continuing with supplements, mistletoe, and cannabis as well as continuing to eat a "clean" diet to combat the cancer on as many fronts as possible. 

I have developed a little bit of an occasional cough, probably because of the lymph nodes in my lungs, but all in all, I am still feeling good and just got back from a long weekend of dancing in Lake Tahoe.

Of course, I am disappointed.  It is apparent that the treatment in Germany did not work.  It's especially difficult when I am in contact with some of the people I met there who are experiencing great results.  Unfortunately, that is not the case for me.

So, I am not down and out by any means, but this holiday season is going to be different from how I had pictured it.  Hoping for a better 2018!

 

Comments

  • derMaus
    derMaus Member Posts: 558
    edited November 2017 #2
    I. Hate. Scans.

    Chris, this certainly isn't good news but as you say it could be much, much worse. I'll be curious as to what your tumor assay comes back with, especially since my own chemo - the standard taxol and carboplatin - didn't work. Our cancer is a super agressive one and you're doing everything in your power to help your body fight back. I'm optimistic that once the right treatment protocol is achieved you'll be able to overcome this  downturn and continue cohabiting with your unwelcome guest for many, many years. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,956 **
    Chris, while there is some

    Chris, while there is some unfortunate news, I am hoping they can come up with a good cocktail to help.  derMaus, like so many of the ladies, are just PEACHY!!!  

    Prayers for all the wonderful ladies here.

  • Cass83
    Cass83 Member Posts: 151
    edited November 2017 #4
    so sorry to hear

    Sorry to hear  your  news, but am thankful you have such a good attitude. I hope and pray they can come up with a treatment plan to help you!

  • ncg007
    ncg007 Member Posts: 136 **
    Chris,  sorry to hear of your

    Chris,  sorry to hear of your disappointing scan after all you went through to get treatment in Germany.  Keep the faith and I pray that your doctors develop a plan with the treatment needed to nip this.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,805 **
    Chris, Darn it. Not the words

    Chris, Darn it. Not the words I really want to use here!!!! So sorry.

    I hope you find the great results with Metformin that Takingcontrol has. That would be so good. And, I'm happy to hear that you will be doing other testing to set a new plan in place in case you need it. Please come back and let us know your next steps. I think of you often.

    Love and Hugs,

    Cindi

     

  • MAbound
    MAbound Member Posts: 1,156 **
    edited November 2017 #7
    Chris, your presence here is

    Chris, your presence here is always missed so it's wonderful to see your smiling picture again, but I really wish things were going better for you! I have my fingers, eyes, and toes crossed that the new testing shows a clearer path forward for treatment that will be effective. You'd think insurance companies would be better about covering genetic and genomic testing from the get-go than they are because getting the right treatment from the beginning seems like it would be a hell of a lot more cost effective than insisting on standard of care without some assurance that it's going to work for an individual. It never ceases to amaze me how much we have to do for ourselves to fight this disease when we're not the experts. 

  • Editgrl
    Editgrl Member Posts: 903
    MAbound said:

    Chris, your presence here is

    Chris, your presence here is always missed so it's wonderful to see your smiling picture again, but I really wish things were going better for you! I have my fingers, eyes, and toes crossed that the new testing shows a clearer path forward for treatment that will be effective. You'd think insurance companies would be better about covering genetic and genomic testing from the get-go than they are because getting the right treatment from the beginning seems like it would be a hell of a lot more cost effective than insisting on standard of care without some assurance that it's going to work for an individual. It never ceases to amaze me how much we have to do for ourselves to fight this disease when we're not the experts. 

    Standard of care

    MAbound, I am beginning to think that there is no such thing as "standard of care" for cancers such as ours.  I totally agree with what you have to say about the insurance companies covering the genetic, genomic, chemo-sensitive tests from the the very beginning.  What is the point of insisting on carbo/taxol if it is not going to be effective?  In addition to the wasted money, there is the wasted time.  And I have echoed your last sentence more times than I care to count.  Cancer and its treatment is fascinating to me on a number of levels...  just wish I was a lot less personally involved.

  • rcdeman
    rcdeman Member Posts: 263 **
    edited November 2017 #9
    Ugh, this sucks! :(

    Ugh, this sucks! :(

    I'm so sorry to hear this disappointing news, Chris, but I do think you are taking a positive initiative to do all you can do to get rid of this horridly aggressive cancer. If I were in your shoes, I wouldn't feel nearly as confident in taking all the steps in treatment you've taken or are going to take. I also think that it's frustrating that uterine cancer doesn't get the attention in research and financial support that breast cancer does. The standard treatment of taxol and carboplatin seems wildly inconsistent and recurrence % is so high. It gets me to think that there has to be better more effective treatment out there that isn't being used or hasn't been discovered yet due to it being overshadowed by other cancers.

    Praying for your wellbeing,
    Rebecca

  • takingcontrol58
    takingcontrol58 Member Posts: 264
    Editgrl said:

    Standard of care

    MAbound, I am beginning to think that there is no such thing as "standard of care" for cancers such as ours.  I totally agree with what you have to say about the insurance companies covering the genetic, genomic, chemo-sensitive tests from the the very beginning.  What is the point of insisting on carbo/taxol if it is not going to be effective?  In addition to the wasted money, there is the wasted time.  And I have echoed your last sentence more times than I care to count.  Cancer and its treatment is fascinating to me on a number of levels...  just wish I was a lot less personally involved.

    Standard of Care is Inadequate

    Chris,

    It is great to hear you will be trying the metformin.  I hope you have great success with it like I have.

    I totally agree with you- there is no "standard of care" for cancer except radiation, chemotherapy and now
    immunotherapy or some targeted drugs.  We are not treated as people- we are treated as tumors.
    Cancer is a systemic disease which is why standard cancer treatments are not successful on advanced and
    metastatic cancer patients.  You have to do more.


    Remember, the goal of cancer treatment today and what they are trained in is to dispense cancer drugs.
    They spend no time trying to determine why you developed cancer; you have to do that yourself. You have
    to treat the cause of your cancer or the cancer will return. Standard cancer treatment does not treat anything
    specific. And one targeted therapy isn't always successul because you probably have many other health issues
    that need to be addressed eg. losing weight, improving your diet, etc.

    I had to target about a dozen things to address all the issues in my body to heal the cancer I did have and
    to help keep me from another recurrence. A tumor is a symptom other issues in your body.
    The oncologists just don't discuss all these things with you.

    I also believe like you and others that is is mandatory to do genomic testing at your initial surgery- I had
    to ask for it from my surgeon- Sloan Kettering didn't even bring it up (I got my chemo there). There are
    standard panels for breast cancer (Oncotype DX and Mammoprint) but they don't do a standard panel
    for endometrial cancer.  I think it is because they don't have treatments for most mutations. They have to
    give you chemo (even though they know it isn't always effective on advanced or metastatic cancer) because
    that is how they make money.  Chemo was invented in the 1940s.  Think about all the billions that have been
    invested in research yet we still get the same treatment that was invented nearly eighty years ago.

    The reason why my name is "takingcontrol" is because that was the first lesson I learned when my cancer quickly
    metastasized after surgery.  If I didn't take control of my health, I would probably have died by now. Our current
    medical sytem does not focus on prevention and is not good at healing chronic diseases.  Cancer is a chronic disease.

    And cancer doesn't have a need to grow in a healthy body.

    Takingcontrol58

     

  • SF73
    SF73 Member Posts: 316 **
    I am sorry to hear the news

    I am sorry to hear the news but glad to hear that the cancer did not spread to any of the organs. It is wonderful to hear that the genomic profiling identified Metformin as a potentially effective treatment even though it does not seem like you had any blood glucose issues prior to your diagnosis. That gives me hope that maybe it is a potential treatment for me too. I am hoping that the next set of tests you will get will identify the right treatment.  So wonderful to hear so many women on this board take the matter in their own hands and try to get the best care their bodies need. 

  • Abbycat2
    Abbycat2 Member Posts: 644
    Chris, I am hoping that the tumor analysis

    from the lymph node will point you in the right direction with treatment.  I noticed that you have not been posting and I was beginning to get concerned.  Wishing you all the best during this holiday season and for many,many years to come.

    Cathy

  • henhill
    henhill Member Posts: 123
    Hope

    Tis the season of hope so I pray you will find something to give you plenty of it .  My last treatment did not go well- J got very sick and my tumors grew.  But we moved  on to something else and it is working pretty goodl.    Sadly, all of it is so hard that even when it works, there is plenty of suffering,   May your holidays be peaceful I will hope for you that something just right will help.

     

     

     

     

     

     

    my 

  • janaes
    janaes Member Posts: 799
    Chris i am so sorry your

    Chris i am so sorry your treatment in germany wasnt helpful. As i read your post i thought about all the thought and though work you went through when desiding what treatment to have when you first were desiding what treatment you wanted to do( before i knew you).  I remember reading this while i was deciding treatment for me.  You were so amazing and never took your desisions lightly. 

    I hope you know that i think you have done every thing right in my eyes.  You just seem to know what you are doing in your life an i love that about you. I am so proud of you. As a single women myself i know what it takes to do hard thing.

    I will be thinking of you as you go forward

    Love janae

  • Editgrl
    Editgrl Member Posts: 903
    Thanks so much for the

    Thanks so much for the support, ladies.  My psyche really needs that right now.  My biopsy is scheduled for Tuesday and I am so ready to get this done.  Nagourney will have the sample on Wednesday, and they say I will have the results in 5-7 days.  I've already set up an appointment with my doctor the week after Thanksgiving to go over results and plan.  If she gets the results earlier than we anticipate, I have the option of a phone consult with her to get the ball rolling.

    I began metformin a week ago, so I'm feeling like I'm being pro-active, but the days are just dragging on for me until all of this stuff happens.