Cheese Update

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  • pinky104
    pinky104 Member Posts: 574 Member
    #62
    CheeseQueen57

    Just so you know, when I had my cancer recurrence when the cancer wrapped itself around my ascending colon, it was also found in my peritoneum.  I've now completed my chemo and had a PET scan yesterday.  I'll find out on Wed. from my oncologist how much progress I've made with it and on Oct. 16, I'll see my GYN/onc. for the results (hopefully) of my genomic testing.  My oncologist thinks I would be an excellent candidate for a drug approved recently by  the FDA that is a parp inhibitor (which has its own nasty side effects).  Maybe knowing how I've done with this recurrence will help you decide what to do about yours.

    Glad you got to enjoy the trip to Spain. 

  • henhill
    henhill Member Posts: 123
    edited October 2017 #63
    Cheese

    My recurrence this summer had me with some ascites and a golf ball sized tumor on my neck.  Now Im getting Taxol/Avastin ever week, and it is kicking my butt!   The upside is the tumor is nearly gone, the abdomen is feeling fine and the same can happen to you!  I dont know if the cancer is at bay, but I am sure better off than I was, and each chemo treatment seems a little more tolerablt than the last.  And so I hope it will be with you, my friend.  You are strong and hopeful.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    edited October 2017 #64
    CheeseQueen57 said:

    I've hit the reoccurence bingo big time

    Well, my oncologist called me and said the ascites sample they got in the paracentesis contained cancer cells....so bingo....peritoneal metastasis!  I will discuss options with her when I return from Spain on October 4.  I've decided not to tell my son and his girfriend until after our trip.  He will have many questions that I will not be able to answer at this point so why spoil the trip for them.  My husband, of course, knows.  Any and all advice is greatly appreciated and thanks for taking this bumpy ride with me.  I'm afraid I know too much what to expect.  I'm just sad for my husband and son. 

     

    CQ, I am so sorry to hear

    CQ, I am so sorry to hear this.  Please enjoy your trip and, I think I can confidently say, you are in all our prayers.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #65
    CheeseQueen57 said:

    I've hit the reoccurence bingo big time

    Well, my oncologist called me and said the ascites sample they got in the paracentesis contained cancer cells....so bingo....peritoneal metastasis!  I will discuss options with her when I return from Spain on October 4.  I've decided not to tell my son and his girfriend until after our trip.  He will have many questions that I will not be able to answer at this point so why spoil the trip for them.  My husband, of course, knows.  Any and all advice is greatly appreciated and thanks for taking this bumpy ride with me.  I'm afraid I know too much what to expect.  I'm just sad for my husband and son. 

     

    CQ, I am so sorry to hear

    CQ, I am so sorry to hear this.  Please enjoy your trip and, I think I can confidently say, you are in all our prayers.  

  • oldbeauty
    oldbeauty Member Posts: 366 Member
    #66
    Belated sending of good cheer, CQ

    Having returned from my own rejuvenating time away, I'm getting caught up on this board and this thread.  I am sorry to hear of this latest development.  So glad you had a fabulous time in Spain.  Isn't it a wonderfully diffferent place to be?!  I'm sending you good vibes for your consultation on Thursday.  No doubt you are armed with info and questions. Don't rest until you've explored all reasonable treatment options and go for the best practitioner you have access to.  Best wishes in your continued fight.  Oldbeauty

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #67
    Update on meeting with Oncologist

    So here’s the deal. My oncologist says despite cancer cells being found in the ascites fluid they removed, there is no measurable tumor at this time. Meanwhile, I continue to have right groin pain that’s been controllable with extra strength Tylenol. So my options are:

    1. Wait and get another scan in November

    2. Try Megase

    3. Begin chemo with carboplatin/doxil

    My Foundation One apparently didn’t show any mutations that are actionable with any existing agents and my tumor has to be measurable to get in a clinical trial. 

    I plan on getting a second opinion at Sloan Kettering (anyone got a reccomention on medical oncologist there?). And I’m still considering HIPEC but my oncologist was very negative regarding the risk/benefit of this surgery for me at this point. 

    Any and all comments/advice would be greatly appreciated as I make this difficult decision  As always, thanks for your continued support  

    BTW, Spain was fabulous!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #68
    Dang.  That is a lot to think

    Dang.  That is a lot to think about, CQ.  No suggestion on a name at SK but I suspect someone else might have something to share.  Barcelona was my favorite place in Europe - the brilliant mind of Gaudi...

  • pinky104
    pinky104 Member Posts: 574 Member
    #69
    CheeseQueen57 said:

    Update on meeting with Oncologist

    So here’s the deal. My oncologist says despite cancer cells being found in the ascites fluid they removed, there is no measurable tumor at this time. Meanwhile, I continue to have right groin pain that’s been controllable with extra strength Tylenol. So my options are:

    1. Wait and get another scan in November

    2. Try Megase

    3. Begin chemo with carboplatin/doxil

    My Foundation One apparently didn’t show any mutations that are actionable with any existing agents and my tumor has to be measurable to get in a clinical trial. 

    I plan on getting a second opinion at Sloan Kettering (anyone got a reccomention on medical oncologist there?). And I’m still considering HIPEC but my oncologist was very negative regarding the risk/benefit of this surgery for me at this point. 

    Any and all comments/advice would be greatly appreciated as I make this difficult decision  As always, thanks for your continued support  

    BTW, Spain was fabulous!

    My Recommendation

    I recommend not going with number 1.  I did that at 3 mos., 6 mos., and a year and the mass I had hadn't grown, and may have gotten smaller.  My GYN/onc decided it wasn't cancer because cancer always grows.  He stopped watching it.  This year (3 years later) it grew like crazy.  I know nothing about #2.  My choice would be #3.  I am going to start a new thread with my results of my oncologist's appointment today.  I had very good news.

  • derMaus
    derMaus Member Posts: 558 Member
    #70
    CheeseQueen57 said:

    Update on meeting with Oncologist

    So here’s the deal. My oncologist says despite cancer cells being found in the ascites fluid they removed, there is no measurable tumor at this time. Meanwhile, I continue to have right groin pain that’s been controllable with extra strength Tylenol. So my options are:

    1. Wait and get another scan in November

    2. Try Megase

    3. Begin chemo with carboplatin/doxil

    My Foundation One apparently didn’t show any mutations that are actionable with any existing agents and my tumor has to be measurable to get in a clinical trial. 

    I plan on getting a second opinion at Sloan Kettering (anyone got a reccomention on medical oncologist there?). And I’m still considering HIPEC but my oncologist was very negative regarding the risk/benefit of this surgery for me at this point. 

    Any and all comments/advice would be greatly appreciated as I make this difficult decision  As always, thanks for your continued support  

    BTW, Spain was fabulous!

    Measurable Outcomes

    Hi Cheese,

    So if there's no measurable tumor, what would they use to gauge whether or not the treatment is working? Would the goal be for the ascites to disappear? A reduction in the "measurable nodules"? I think getting the second opinion is a very, VERY good idea. I'm sorry if you already answered this question and I missed it, but I can't recall that detail and having it would make a difference in my opinion, since you were kind enough to ask it ;)   B

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #71
    Hey Cheese, Well that second

    Hey Cheese, Well that second opinion seems to be your best option. At least you would have either medical agreement or another path to follow.

    Such a hard place to be but I'm glad you don't have a "real" tumor at this point. And this may be a dumb thing to say but it feels like that might buy some time?

    Looking forward to hearing about your next steps.

    Love and Hugs,

    Cindi

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #72
    pinky104 said:

    My Recommendation

    I recommend not going with number 1.  I did that at 3 mos., 6 mos., and a year and the mass I had hadn't grown, and may have gotten smaller.  My GYN/onc decided it wasn't cancer because cancer always grows.  He stopped watching it.  This year (3 years later) it grew like crazy.  I know nothing about #2.  My choice would be #3.  I am going to start a new thread with my results of my oncologist's appointment today.  I had very good news.

    Definetly CA

    There'a definetly cancer going on because there were cancer cells in the ascites fluid. Just a matter of time, I think, and rate that I grow   

  • MoeKay
    MoeKay Member Posts: 477 Member
    #73
    Thread on MSKCC

    Hi Cheese,

    I found a thread from several years ago that discusses Sloan Kettering.  I thought it might be of some help:

    https://csn.cancer.org/node/293078

    Wishing you all the best as you navigate through the decision-making process.

    MoeKay

  • Kvdyson
    Kvdyson Member Posts: 789
    #74
    If you can schedule the scan

    If you can schedule the scan for the beginning of November, my opinion is that it may be worth it to use the time beforehand to get that second opinion before making any decisions regarding next steps since it's only a couple of weeks from now.

    Wishing you good luck with whichever option you choose! Kim

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited October 2017 #75
    CheeseQueen57 said:

    Update on meeting with Oncologist

    So here’s the deal. My oncologist says despite cancer cells being found in the ascites fluid they removed, there is no measurable tumor at this time. Meanwhile, I continue to have right groin pain that’s been controllable with extra strength Tylenol. So my options are:

    1. Wait and get another scan in November

    2. Try Megase

    3. Begin chemo with carboplatin/doxil

    My Foundation One apparently didn’t show any mutations that are actionable with any existing agents and my tumor has to be measurable to get in a clinical trial. 

    I plan on getting a second opinion at Sloan Kettering (anyone got a reccomention on medical oncologist there?). And I’m still considering HIPEC but my oncologist was very negative regarding the risk/benefit of this surgery for me at this point. 

    Any and all comments/advice would be greatly appreciated as I make this difficult decision  As always, thanks for your continued support  

    BTW, Spain was fabulous!

    Megace

    There's no reason Megace can't be given in conjunction with any of the other options you've been offered. 

    Were you tested after your hysterectomy to see if you were ER (estrogen receptor) or PR (progesterone receptor) positive? Unless you are PR +, there really wouldn't be much point to megace therapy, but a study last June showed that Metformin reactivates or strengthens PR receptivity to Megace.

    http://www.croh-online.com/article/S1040-8428(16)30139-1/fulltext  (see section 4)

    Megace doesn't kill cancer cells so much as it blocks them. Something to keep in mind.

    I tested 90% ER+ (strong) and 90% PR+ (moderate to weak) after surgery and I'm on both Megace and Metformin since the end of January. Not much in the line of noticeable side effects from it other than some weight gain from fluid retention and increased appetitie (not so much between meals as that when I do eat, my brain goes "what else can I have?"...it's controllable. Oh, and no armpit hair to shave since starting on it either! The hair on my head is growing just fine; I'm back to getting it cut every couple of weeks.

    I'm kind of with Pinky about option 3 because you know there are cancer cells present and that treats systemically. Why wait for things to keep spreading to somewhere else?

  • MAbound
    MAbound Member Posts: 1,168 Member
    #76
    CheeseQueen57 said:

    Update on meeting with Oncologist

    So here’s the deal. My oncologist says despite cancer cells being found in the ascites fluid they removed, there is no measurable tumor at this time. Meanwhile, I continue to have right groin pain that’s been controllable with extra strength Tylenol. So my options are:

    1. Wait and get another scan in November

    2. Try Megase

    3. Begin chemo with carboplatin/doxil

    My Foundation One apparently didn’t show any mutations that are actionable with any existing agents and my tumor has to be measurable to get in a clinical trial. 

    I plan on getting a second opinion at Sloan Kettering (anyone got a reccomention on medical oncologist there?). And I’m still considering HIPEC but my oncologist was very negative regarding the risk/benefit of this surgery for me at this point. 

    Any and all comments/advice would be greatly appreciated as I make this difficult decision  As always, thanks for your continued support  

    BTW, Spain was fabulous!

    2nd opinion doctors at MSKH

    My daughter lives in Hoboken and had a squamous cell tongue lesion removed by the chief of head and neck surgery at MSKH. Not what you need, but she seems to have a number of friends and co-workers who've had uterine cancer and below are two possibilities for you to look into further. They kind of came out the woodwork when she told them about me and the concern about her being at higher risk for it because of PCOS and Lynch Syndrome. The first is at the Monmouth, NJ branch and the other is in Manhattan. It's rather disheartening that this cancer is so common and yet it doesn't get the attention that breast cancer gets!

    https://www.mskcc.org/cancer-care/doctors/jason-konner

    https://www.mskcc.org/cancer-care/doctors/david-hyman

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #77
    MAbound said:

    2nd opinion doctors at MSKH

    My daughter lives in Hoboken and had a squamous cell tongue lesion removed by the chief of head and neck surgery at MSKH. Not what you need, but she seems to have a number of friends and co-workers who've had uterine cancer and below are two possibilities for you to look into further. They kind of came out the woodwork when she told them about me and the concern about her being at higher risk for it because of PCOS and Lynch Syndrome. The first is at the Monmouth, NJ branch and the other is in Manhattan. It's rather disheartening that this cancer is so common and yet it doesn't get the attention that breast cancer gets!

    https://www.mskcc.org/cancer-care/doctors/jason-konner

    https://www.mskcc.org/cancer-care/doctors/david-hyman

    Thanks

    Dr Konner is one my oncologist at Fox Chase recommended. I'm in the process of them obtaining my records from Fox Chase. Apparently he's not taking new patients but my doc was going to call up there. My next scan is November 29 but doc said she'd want to do one earlier  if I started on Megace. Hopefully I can get appt quick at MSK.  I asked about sensitivity and apparently my tumor was hormone sensitive but still might not be effective because it was Grade 3 and I'm 60 years old. But it might be worth the try. I'll bring up the metformin again although she always says no on that. Thanks for advice. I know I'm not in for a cure anymore. 

  • MAbound
    MAbound Member Posts: 1,168 Member
    #78
    CheeseQueen57 said:

    Thanks

    Dr Konner is one my oncologist at Fox Chase recommended. I'm in the process of them obtaining my records from Fox Chase. Apparently he's not taking new patients but my doc was going to call up there. My next scan is November 29 but doc said she'd want to do one earlier  if I started on Megace. Hopefully I can get appt quick at MSK.  I asked about sensitivity and apparently my tumor was hormone sensitive but still might not be effective because it was Grade 3 and I'm 60 years old. But it might be worth the try. I'll bring up the metformin again although she always says no on that. Thanks for advice. I know I'm not in for a cure anymore. 

    Well, I'm grade 3 and 60

    Well, I'm grade 3 and 60 years old too, so that shouldn't be an impediment to having the Megace therapy. Keep pushing on the Metformin, especially if Megace is a possibility for you. 

  • Editgrl
    Editgrl Member Posts: 903 Member
    #79
    Second opinion

    I think a second opinion is a great idea.  As Cindi said, you'll either get agreement or possibly another set of options to choose from.

    It's so hard to make these decisions.

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited October 2017 #80
    Update

    So after a couple days to think about it, I’ve decided to start the Megace and still pursue the 2nd opinion. I’ll see The doc on Monday and get a scan on Friday. I’m seeming to have more of that darned lower right groin pain. I didn’t really have too much of a problem in Spain. I’m hoping it’s not an indication of something bad and maybe it’s just that I have less distractions (wishful thinking I know). 

    BTW, thinking about also consulting Dana Farber. Any suggestions on medical oncologists up there. 

     

    Thanks. 

  • pinky104
    pinky104 Member Posts: 574 Member
    #81
    Another Thought

    There is one more possibility.  I had right lower quadrant pain in 2011 and 2012 and it turned out to be an incisional hernia, for which I needed surgery.  Although it might not be the same kind of hernia, I would think there is also a possibility of yours being something like that.  I got the pain sometimes when I wasn't lifting things and often, when I was.  A general surgeon would be who you'd call to repair it.

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