Upsetting news,,,mets to the liver and more

Always Hopeful
Always Hopeful Member Posts: 234
edited March 2014 in Uterine/Endometrial Cancer #1
Hi all,

Have been experiencing abdominal,midriff, back and side pain over the last two weeks. Even though we found out that during the carbo/taxol treatments I had profuse tumor growth, I never experience even discomfort, so pain was a big RED FLAG. CT scans taken on Thursday...much progression... mets to liver, rectas muscle involvement and more. My chemo was switched immediately...out went the Gemzar...in came one week of Doxil yesterday, to be followed by 3 weekly Topotecan, followed by 1 Doxil...I must monitor my pain re my own symptoms log and how ofter I need to take the newly prescribed pain pills (something so foreign to me, thankfully, up to now).

I will be reading through the Doxil recommendations posted from Linda, Diane and others to better handle the Doxil side effects. I am currently 'nail typing' hoping that is not as problematic for hand/foot syndrome but, after typing this, will be limiting my responses to as few words as possible. I will read through the postings to keep up to date with all of you and the wonderful information and support you provide to everyone.

I'm not sure that many of us have taken Topotecan...would love to hear of any experiences you might have had. I will also search the complete Network for info.

My doc will be providing me the info of a clinical trial offered here at Long Island Jewish/North Shore Hospital. This is being highly considered since I have been quite resistant, to say the least, with the current protocols.

"Nail typing" definitely takes longer than regular touch typing so I'll be signing off for now. Looking forward to reading your posts on this board but, as I said, will probably be writing only short, perhaps even cryptic messages. I know you will all understand! Thanking you in advance for all your good wishes, support and info.

Peace and hope,

JJ

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Oh no!
    I'm so sorry to hear of your news....but sounds like you and doc have jump started to get to the issue with changes in drugs. Unfortunately I can't comment or recommend anything about the drugs as I just had the standard carbo/toxil.

    Most everyone in my local therapy group (all females with some type of cancer) always suggest a clinical trial if available. Do know you will be monitored very, very closely and must follow the rules. Good work!!

    Lastly, I'm here for you and have a heavy heart to see what you must endure. Put on your glasses that show reality and offer you the vision of strength. Know you will endure, just some of us must take a few different paths before getting to our goal of NED. Plse be kind to yourself and read some books on positive, mental vision. It really works for me, and possibly for you.

    Positive vibes going your way.....
    (((( hugs ))))
    Jan
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #3
    Your post,
    Dear JJ,

    It is with heavy heart that I read your post, but you nom de plume, Always Hopeful, permeates your supportive posts to us all. Know that our prayers and healthful wishes are flowing to you in cyberspace.

    Sara Zipora
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #4
    Sara Zipora said:

    Your post,
    Dear JJ,

    It is with heavy heart that I read your post, but you nom de plume, Always Hopeful, permeates your supportive posts to us all. Know that our prayers and healthful wishes are flowing to you in cyberspace.

    Sara Zipora

    JJ
    I am very sad to read your news. You sound amazingly calm. I have some meditation tapes that I'd be happy to send if you are interested. Send me email on this site and give me address. Simonton's book, Getting Well Again, has amazing hope stories of positive response from near terminal patients. I recommend this book highly.

    I will be praying for a positive response to your treatment and that you stay "always hopeful". God bless you. Take heart, dear JJ. Mary Ann
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #5
    daisy366 said:

    JJ
    I am very sad to read your news. You sound amazingly calm. I have some meditation tapes that I'd be happy to send if you are interested. Send me email on this site and give me address. Simonton's book, Getting Well Again, has amazing hope stories of positive response from near terminal patients. I recommend this book highly.

    I will be praying for a positive response to your treatment and that you stay "always hopeful". God bless you. Take heart, dear JJ. Mary Ann

    JJ
    So sorry to hear about the ct results.
    Hopefully the quick change in your chemo will bring fast positive results.

    That is good that you log the symptoms.

    Remember, put your worries in God's hands.

    Hugs,
    Cindy
  • HellieC
    HellieC Member Posts: 524 Member
    #6
    hopeful girl 1 said:

    JJ
    So sorry to hear about the ct results.
    Hopefully the quick change in your chemo will bring fast positive results.

    That is good that you log the symptoms.

    Remember, put your worries in God's hands.

    Hugs,
    Cindy

    Thnking of you
    I'm so sorry you've had such a bad start to the New Year. But it does sound as if your medical team are right on the case.
    I don't have any experience of the drug regimen they are suggesting (I'm still going through my carbo/taxol protocol) but fingers crossed it will start to zap this new tumour growth as soon as possible.

    Thinking of you.
    Helen
  • kkstef
    kkstef Member Posts: 688 Member
    #7
    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen
  • Songflower
    Songflower Member Posts: 608
    #8
    kkstef said:

    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen

    How are taking everything?
    How are you taking all of this. We are here for you. Crying is a release. New chemo sounds like a good new stragegy. I 'm glad you have something for your pain.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    #9
    kkstef said:

    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen

    How are taking everything?
    How are you taking all of this. We are here for you. Crying is a release. New chemo sounds like a good new stragegy. I 'm glad you have something for your pain.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    #10
    kkstef said:

    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen

    How are taking everything?
    How are you taking all of this. We are here for you. Crying is a release. New chemo sounds like a good new stragegy. I 'm glad you have something for your pain.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    #11
    kkstef said:

    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen

    How are taking everything?
    How are you taking all of this. We are here for you. Crying is a release. New chemo sounds like a good new stragegy. I 'm glad you have something for your pain.

    Love,
    Diane
  • Songflower
    Songflower Member Posts: 608
    #12
    kkstef said:

    JJ
    I am so sorry to hear about the latest scan results. What a bummer! I am hoping that your new drug combo will be the perfect one of you! I think it is a good idea to at least look into the clinical trial your physician mentioned.

    Await more news for you as your plan unfolds. Your eternal optimistic spirit will help you through this bump in the road.

    Sending you big hugs and lots of positive energy!

    Karen

    How are taking everything?
    How are you taking all of this. We are here for you. Crying is a release. New chemo sounds like a good new stragegy. I 'm glad you have something for your pain.

    Love,
    Diane
  • Domina
    Domina Member Posts: 62
    #13
    Always Hopeful
    To JJ:
    I am so sorry to hear of the progression. I wish I could be of some help to stop the progression & pain. Since I can't please know you are in my daily prayers & I know what ever is thrown your way, you will pull through with grace & dignity & your positive nature.
    We are in your corner. Ty for being in mine. Hugz.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #14
    Domina said:

    Always Hopeful
    To JJ:
    I am so sorry to hear of the progression. I wish I could be of some help to stop the progression & pain. Since I can't please know you are in my daily prayers & I know what ever is thrown your way, you will pull through with grace & dignity & your positive nature.
    We are in your corner. Ty for being in mine. Hugz.

    (((JJ))) You seem to be just a step ahead of me in this.
    Please keep posting and let us know how you are managing your pain. I imagine you'll want to up your fiber and take stool softeners to offset any possible pain-killer-related constipation. I am so sorry you are now dealing with this. We may be holding hands across the miles now as our journeys are closely aligned right now, so please stay in touch. (((JJ))

    I have mets to the liver, too, and wonder if the discomfort I feel in my torso region is from the carboplatin I'm getting every Thursday, or the neupogen shots I get every Monday, Tuesday, & Wednesday,...or is it disease progression? I comfort myself that I have ALWAYS gotten some level of digestive discomfort between chemo rounds, and that Nuelasta and nuepogen do cause bone pain; and that the discomfort lessens when I burp or have a bowel movement. I tell myself that proves it's digestion/side affect related and not my cancer growing. But who knows if that's even true? I didn't even bother getting my CA125 result from last week's pre-chemo labs, since I am already getting chemo and there isn't much else I can do even if it's going up. I will wait until after my NEXT pre-chemo lab on Thursday and then see what the 2 numbers are. But I doubt my chemo-onc would want to change chemo drugs before my next CT/PET scheduled for late February. I don't feel real pain; just discomfort and gassiness after I eat.
  • upsofloating
    upsofloating Member Posts: 466 Member
    #15
    JJ, I'm so sorry to hear the
    JJ, I'm so sorry to hear the resistance you are experiencing to the routine go-to chemo treatments. Stay positive that it is just a matter of finding the right one that will curtail the progress - and stomp it out!
    You are are in my thoughts as I send positive thoughts your way, Annie
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #16
    JJ
    Sending prayers and hugs of hope out to you...

    Please keep fighting !!


    Laurie
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #17
    Always Hopeful!
    JJ- You are "Always Hopeful" even in light of this spread of the cancer. Please remember that we are praying for you and we are always hopeful too. Your physician and team have a plan and you are a fighter and so many people are sending loving energy and thoughts to you.
    (((HUGS)))
    Lori
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #18
    Thank you all!
    Hi all,

    I am truly humbled by your supportive and loving postings and can't thank you all enough.

    I am trying to keep my typing down to a minimum because of the doxil. I slept most of the week away but never had to take the full amount of allowed pain killers. Had some problem with nausea and really didn't want to eat much.

    I did get my first treatment of topotecan yesterday. My lab work, however, showed severe anemia (that explained the extreme tiredness).Soooooo, today I was given 2 units of red blood cells. It's amazing how quickly your complexion changes and how much better you feel.

    MaryAnn & Jan: Thank you for your suggestions of books, meditation tapes etc.

    Diane: I agree crying is certainly therapeutic... and I've done a lot of that this week. I feel like it helped cleanse my mind and spirit and is enabling me to muster up the necessary strenth to forge ahead.

    Linda: I, too, wonder constantly about the feelings I have throughout my abdomen. I swear I can almost feel the digestive process stages and can predict when my food will evacuate. There is a tumor I can actually feel in my midriff and I almost want to mark measurements so I can track its growth/shrinkage. It is driving me nuts!!! No problems with constipation thankfully.

    Shouldn't have written as much but did want you all to know of this weeks happenings and to let you know how very much your postings mean to me.

    Will post as often as I can. Please all stay well.

    Peace and hope, JJ
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #19
    Always Hopeful said:

    Thank you all!
    Hi all,

    I am truly humbled by your supportive and loving postings and can't thank you all enough.

    I am trying to keep my typing down to a minimum because of the doxil. I slept most of the week away but never had to take the full amount of allowed pain killers. Had some problem with nausea and really didn't want to eat much.

    I did get my first treatment of topotecan yesterday. My lab work, however, showed severe anemia (that explained the extreme tiredness).Soooooo, today I was given 2 units of red blood cells. It's amazing how quickly your complexion changes and how much better you feel.

    MaryAnn & Jan: Thank you for your suggestions of books, meditation tapes etc.

    Diane: I agree crying is certainly therapeutic... and I've done a lot of that this week. I feel like it helped cleanse my mind and spirit and is enabling me to muster up the necessary strenth to forge ahead.

    Linda: I, too, wonder constantly about the feelings I have throughout my abdomen. I swear I can almost feel the digestive process stages and can predict when my food will evacuate. There is a tumor I can actually feel in my midriff and I almost want to mark measurements so I can track its growth/shrinkage. It is driving me nuts!!! No problems with constipation thankfully.

    Shouldn't have written as much but did want you all to know of this weeks happenings and to let you know how very much your postings mean to me.

    Will post as often as I can. Please all stay well.

    Peace and hope, JJ

    JJ so sorry to hear about the mets to liver
    I have been gone for two weeks, so I was sorry to read your post about mets to the liver. I hope that the topotecan/doxil will work for you. You have been through so much already. Glad that you are feeling better after your two units of blood. I hope that each day you start to feel better. Take care of yourself. In peace and caring.

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