Any UPSC 1a who did observation rather than chemo/radiation

124678

Comments

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Not doing well

    Thank goodness I have you all to talk to at this time. Day 2 and 3 post chemo was a breeze, but as the steriods wore off, I crashed into pain and fatigue. I have not had a BM and am taking all kinds of meds. At this point I am not feeling very good about my care as I have to call and talk to a nurse or see a doctor that is not mine. I wonder if I want to continue on this journey of chemo or let this be it. I know the middle of the night is not a good time to make decisions. My daughter is here with me but she wonders about the quality of concern from doctor as well. I am hoping tomorrow will look brighter. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Donna Faye, So sorry you are

    Donna Faye, So sorry you are having to deal with this. I don't know if this will help but you are hitting the peak of the issues associated with chemo. It is "normal" for most of us. And it hits about day 3. The worst of it will last about 3 days. Some are lucky and have less issues. Drink lots of water. Watermelon helped me a lot.  If you do decide to continue with your next treatment, start taking Miralax a couple of days before and for a couple of days after the treatment. This will get things moving.

    Fatigue is going to be with you throughout most of this and will last a while post treatments. Some days are much better than others.

    Hang in there. It does get better.  Please come back and let us know how you are doing.

    Love and Hugs,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited April 2017 #64
    Constipation was probably the

    Constipation was probably the most significant side effect I had from chemo, especially the first few times.  I echo what Cindy said about Miralax.  I also used Smooth Move tea, heated prune juice, lots of liquids, fresh fruits.  After the first few rounds, I started just to not worry about not having a BM unless it was uncomfortable, and that seemed to help a lot.  My body usually normalized by the end of the first week, so hang in there.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited April 2017 #65
    Always dark before the dawn

    I am better today. Have started to have some movement in the bm dept.  I am feeling more normal. i had a drop in temps yesterday and was sent to the ER from onco for tests. Sitting in that waiting room with so many sick people just broke me down and my daughter and I left w/o tests.  Surely there is a better place to get labs But, will stay strong. I do think I expected to do better and to feel more in control. 

    Again, you all mean so much to me It is just a comfort to walk with those who know your path though we all wish it were another.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited April 2017 #66
    Faye, it is good to hear that

    Faye, it is good to hear that you are doing better today. Chemo is tough and you will have lots of ups and downs but you'll get through it. Stay hopeful!

    Also, try to stay on top of the constipation. After a major episode with constipation after my first cycle, I took Miralax every day until chemo was over. It made a world of difference.

    Also, keep moving. Even if it's just to the mailbox and back, do it. Then, do it again. Keep doing it. You'll feel more energized if you keep moving. Trust me, you won't want to do it. You'll need to push yourself. The studies are out that it works (Google the term "chemo fatigue study 2017" if you want to see them).

    Hoping that tomorrow is even better for you! Keep us posted. Kim

  • Soup52
    Soup52 Member Posts: 908 Member
    I can pretty much echo what

    I can pretty much echo what the others have said. It can be deceiving when you feel so good the day after chemo. That's the steroids doing theIf job. The feeling pretty poorly for a few days is part of it, too. My gastroenterologist told me I can take miralax as often as I need to also. I continue to also. I'm not sure how your oncologist office works, but mine has a number I can call anytime I'm having a problem such as fever etc. it may be the PA I talk to or the doctor himself. It varies.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    The Mind Game

    Hi Donna Faye,

    Sorry your'e having to go through this.  Previous posters have some great advice.  Miralax is your friend. 

    As important as dealing with the physical side effects is battling the mental side effects.  My friend had sent me a book that was of comfort to me.  It was called:  Praying Through Cancer: Set Your Heart Free from Fear: A 90-Day Devotional for Women

    Also, I practiced some guided imagery exercises.  U of M cancer center has some on their website and they're free.  You can find them at :  http://www.mcancer.org/support/managing-emotions/complementary-therapies/guided-imagery/audio-library, I would try to do this every day. 

    Good luck.  We're here for you. 

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    I love you Ladies!

    I have spent much of the day sleeping, finally; reading more discussions on steriods so I now know what I should have been told before treatmant. My constipation was resolved and I sent my daughter for miralax. I guess there is so much to tell us that some of it is omitted. I, do , however believe I will be better prepared for #2 as I will taper the steriods, not stop and crash. I have been so frustrated but the hugeness of my cancer center but am slowly figuring out how to get the information I need. At 77, I grew up when the doctor made housecalls and my first cancer treatment was a small office where I felt cared for and known Times they are a changing. I am so thankful I found this website and am sharing with other ladies going through this. xoxoxo Faye

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Steriods

    Wow!I should have known what steriods do to your metabolism!!! I now know why I crashed so hard and will certainly ask more questions prior to #2 chemo. 7 days post chemo and finally feeling almost normal.   We were so concentrated on delivery - port or PICC that steriods were overlooked. 

  • Linda D
    Linda D Member Posts: 2
    edited April 2017 #71
    Stage 1A, Grade 3 - NO CHEMO recommended by Oncologist

    I was diagnosed with Serous Endometrial Cancer on March 2.  On March 20, I had a hysterectomy.  The cancer was in a little "lump" in the uterus and had not spread to lymph nodes, uterine muscle, etc.  Because the results were good, my oncologist said that I would not have to have chemo.  I was thrilled.  But now I'm beginning to wonder.  Especially when I see all the ladies who were also 1A, but had chemo AND radiation.

    I have an appointment with another cancer center on April 28 for a second opinion.  I have not had a CA-125 test yet.  The CT scan showed a small spot on one lung, but the oncologist said that it didn't mean anything.  Also, he does not prescribe Metformin "off label," and got very huffy when I asked about it.

    What do you all think?

    (Also, I'm 72 and I still need to work full time.)

     

     

  • Editgrl
    Editgrl Member Posts: 903 Member
    I think a second opinion is

    I think a second opinion is always a good thing, especially with the rarer and more aggressive cancers.  While the NCCN guidlines do include observation only for "select patients," standard of care for UPSC generally does include chemo and/or some kind of radiation for even Stage 1A. Make sure you have copies of your pathology reports, scans, and scan reports in case you find yourself wanting a third opinion.  

    The CA-125 may or may not be a good marker for you.  In my case, it has always been in the normal range, even before my surgery, and even now, when I have a recurrence.  However, for some it can be an indicator.  It certainly wouldn't hurt to have it done, and some doctors do it matter of course periodically.

    Doctors do get weird about the metformin.  TakingControl58 has mentioned this, too.  I wonder if your oncologist prescribes any drugs off-label or he's just got an attitude about this one.  I, too, ran into a wall when I asked my medical oncologist about it.

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited April 2017 #73
    Linda D said:

    Stage 1A, Grade 3 - NO CHEMO recommended by Oncologist

    I was diagnosed with Serous Endometrial Cancer on March 2.  On March 20, I had a hysterectomy.  The cancer was in a little "lump" in the uterus and had not spread to lymph nodes, uterine muscle, etc.  Because the results were good, my oncologist said that I would not have to have chemo.  I was thrilled.  But now I'm beginning to wonder.  Especially when I see all the ladies who were also 1A, but had chemo AND radiation.

    I have an appointment with another cancer center on April 28 for a second opinion.  I have not had a CA-125 test yet.  The CT scan showed a small spot on one lung, but the oncologist said that it didn't mean anything.  Also, he does not prescribe Metformin "off label," and got very huffy when I asked about it.

    What do you all think?

    (Also, I'm 72 and I still need to work full time.)

     

     

    2nd opinions

    2nd opinions never hurt and may be very helpful.  Different doctors certainly have different ideas concerning treatment sometimes.  Some even have gotten a third opinion.  I have an oncologist and a gyro-oncologist.  They two different hospitals two hundred mile apart, and often have different ideas.  They talk and discuss and come up with a treatment plan that they both agree on.

    i asked both of my them about the Metformin and they both said that there was interesting research out there and that it held promise for some.  But not for me.  My blood sugar was already low normal and they were afraid that it would prove on the dangerous side for me.

    Linda, welcome to this club that no one really wants to belong to.  You will find a great group of ladies here.  This as a good place to come for info and support.

    Hugs and prayers, Lou Ann

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited April 2017 #74
    To Linda D and Chris - about metformin - I'm riled up

    I always find it very suspicious when oncologists have an attitude about metformin. The oncologist
    in charge of giving me my chemo at MSKCC called my integrative oncologist unethical for prescribing
    it for me, and yet I'm insulin reistant, which is a major risk factor for our cancer.  My glucose, insulin and
    insulin growth factor-1 levels have never been more normal. Metformin is addressing all the health issues
    that drove my cancer plus has anti-cancer properties. And the drug will prevent me from getting
    diabetes (my father got Type 2 diabetes in middle age so I knew I was at risk). But the same oncologist
    entered me in the Taxol/Carbo trial with placebo or metformin- and were giving me bottles of pills that
    could have been metformin. Luckily I got out of the trial after one month, and was in complete remission
    6 months later. From the day I started metformin, Feb 2015, I never grew more cancer. 

    It is well known that metformin has many anti-cancer benefits- the anti-cancer benefits were first discovered in
    2005- that is 12 years ago. They fast track expensive immunotherapy drugs yet won't fast track a cheap,
    effective drug like metformin for cancer treatment. It costs me $8/month for metformin- it is the only
    prescription drug I use. I think that's why- it's cheap and it works. Next month will be two years since
    my chemo ended, and I haven't had any since then, and I remain in remission, and I had Stage IV metastatic EC. 

    There are no cancer drugs on the market that do all that metformin can do. Will it work on everyone? Of course not,
    but neither does chemotherapy for advanced or metastatic endometrial cancer. You have to do more than just use
    standard cancer treatments.

    The issue of prescribing the drug off label is bogus, because the chemo they are giving us is prescribed
    off label for endometrial cancer.  These chemos were originally tested on breast and ovarian cancer.  Look how
    many women get Avastin for EC, but it is not FDA approved for endometrial cancer. TheFDA does not test every
    chemo and chemo combination on every type of cancer.  So these doctors are hypocrites. They have no right
    witholding a drug from you that has more research on it than most drugs on the market. And might save your life.
    It saved my life.

    I would suggest you talk to your internist about the drug or an endocrinologist or integrative oncologist. 
    If you have pre-diabetic levels of glucose (100-125) metformin can help you. This drug might save your life,
    or keep your cancer from progressing-no doctor has a right to refuse a drug that has so much potential.
    And serous carcinoma is the most aggressive. Frankly, I don't know how some doctors sleep at night knowing
    their patients have a poor prognosis yet they refuse to prescribe metformin.  You could tell your oncologist that
    you will sign a document that says you will not hold your doctor responsible for any side effects of the drug, if that
    is what is his issue. See what he says then. 

    You are in charge of your cancer, not your doctor.

    Takingcontrol58

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited April 2017 #75
    You sound just like me

    Linda, your UPSC sounds exactly like mine, even to the lung node. After much research and starting this discussion, it does appear that most oncologists want at least 3 chemo and 5 bracky. I decided, at 77, to take the treatment and after a rough first one, am pretty sure I will finish all recommended. I discovered that I must be the only human living who has never taken a steriod. I followed the directions given and stopped them on the second day after chemo and had a crash. Now 9 days post chemo, I am finally feeling almost normal and realize had I tapered the steriods off, would probably have been fine. 

    Do read all this discussion and do get another opinion and then ,as all these ladies advise, follow your own heart and mind.  I have 2 sons in medicine and they encouraged me to do the treatments after their own reserch. Feel free to write us as often as you need. The support here has been my mainstay after my family.

    I know how you are feeling.

    Faye

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    second chemo

    In spite of 4 bad days from stopping steriods too quickly, have had 2 good weeks and now looking at #2 on Thursday. Less concern now that have learned some lessons about chemo in the 21st century. Family and friends have boosted my spirit and am going in optimistic about the next bout.  Then only one more to go, some radiation and I can put this behind me for a long time - hopefully.

    Again, many thanks to this website and the strong women and men who post and find friends they may never meet but whose words mean so much at a time when needed.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member

    second chemo

    In spite of 4 bad days from stopping steriods too quickly, have had 2 good weeks and now looking at #2 on Thursday. Less concern now that have learned some lessons about chemo in the 21st century. Family and friends have boosted my spirit and am going in optimistic about the next bout.  Then only one more to go, some radiation and I can put this behind me for a long time - hopefully.

    Again, many thanks to this website and the strong women and men who post and find friends they may never meet but whose words mean so much at a time when needed.

    Good luck Donna on chemo #2.

    Good luck Donna on chemo #2. Your attitude will help get you on the other side of the bad days! I'll be sending you loads of support for this next round....

    Love and hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789

    second chemo

    In spite of 4 bad days from stopping steriods too quickly, have had 2 good weeks and now looking at #2 on Thursday. Less concern now that have learned some lessons about chemo in the 21st century. Family and friends have boosted my spirit and am going in optimistic about the next bout.  Then only one more to go, some radiation and I can put this behind me for a long time - hopefully.

    Again, many thanks to this website and the strong women and men who post and find friends they may never meet but whose words mean so much at a time when needed.

    Agreed! Now that you have one

    Agreed! Now that you have one under your belt it should be a little easier to manage this second cycle. Good luck to you and let us know how you are doing. Kim

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    Donna Faye, 

    Donna Faye, 

    I love your picture! It's like "bring it on, this won't get the best of me." I wish you well on your next infusion.

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    The new look!

    Could not take the hair coming out in clumps so shaved the head and now in cowgirl mode! Feeling much calmer this time around as once you have a round, you sort of know what to expect.  Will be there at 9 a.m. so better than the 2 p.m. app't. Won't close the center down. Hoping for an easier let down as we are tapering steriods off. Did any of you get advice on tapering steriods?

    Hugs to all. Cowgirl Faye

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    Cowgirl,

    Cowgirl,

    Nice new look! I hope your 2nd round goes smoothly. 

    Shari