Research study on UPSC

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  • AWK
    AWK Member Posts: 364 Member
    #22
    AWK said:

    Hi Maggie!

    I went through three rounds of Doxil over the summer and it really wasn't that bad compared to carbo/taxol treatments. I am now considered platinum resistant.  The main side effects I had were being tired and lightly nauseous.  My feet did get dry and susceptible to blisters so I just put moleskin over the vulnerable spots and slathered on underlying smooth at night.  I worked full time the whole way through And we did a ton of other stuff.  I am having more side effects under the Avastin I am on now than the Doxil.  It was easy easy after all we have been through!  what questions can I answer for you?  Sending healing wishes!  Anne

    Continued

    Udderly smooth on my feet.  My blood pressure stayed normal, I ordinarily have low blood pressure.  Also, if you are inclined there is a clinical trial out there that you might qualify for using cabozantinib.  It is in phase two and showed good success in the first round.  I was all set for it, the team running it had a concern about one of my mestastic tumors adjacent to my heart.  A cardiologist and a cardio thoracic surgeon both opined it wouldn't be medically safe for me so I was rejected the day before I was scheduled to start.  Another thing my doctors have done is gotten approval from my insurer to send frozen sections out to Foundation One for genome testing.  We are awaiting those results which will identify further other types of cancer that might be present as well as various drugs the tissues appear to respond to.  All good things and hopefully options for you to check into if needed.  You are the first person in all of my searching that I have come across who is in a similar situation.  My doctors told me it was rarified strata and now I believe them!  We can do this.  Just another fork in the road on this journey.  Stay strong!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #23
    Maggie_mac said:

    UPSC recurrence & platinum resistance

    Hello All, 

    I haven't been here in quite a while because it always seemed difficult to find the UPSC group to follow-up.  Today I searched "papillary" and ended up here. 

    I was diagnosed with UPSC 3 years ago and it will be 3 years next month that I had surgery.  Because of omentum and peritonal metastases my cancer is stage 4B.  I had 6 sessions of taxol/carboplatin in 2012 and my CA 125 stayed low for about 9 months.  I did another 6 sessions in 2013 and that lasted about 6 months.  I did another 6 sessions this spring with my last chemo in May.  It's been almost 3 years since I've used a hair brush!

    My oncologist has already mentioned that I seem to be platinum resistant and has said the next step is probably Doxil.  I would be interested in hearing of any experience with this product.  From what I've read it seems to have some limiting cardiovascular side effects.

    Overall, I feel pretty good, although sometimes I just lack the desire to do some of the things I used to enjoy.  My best wishes to everyone.

     

    Maggie    

     

     

    Maggie, as Ro said, the

    Maggie, as Ro said, the Ovarian cancer thread has quite a few women who have been, or are on Doxil, but everyone is different so please keep that in mind as you read the different takes.  They may be able to help with advice on side effects as well.  It is good to hear you feel pretty good! 

  • Maggie_mac
    Maggie_mac Member Posts: 32
    #24
    Ro10 said:

    Maggie

    I am sorry that  the taxol/carb is no longer working for you.  I can't imagine 3 years without using a hairbrush.   Ihave had 3 different rounds of taxol/ platins but my hair grew back between the rounds.  I have been bald four times.  I had the sandwich treatment initially and my hair grew back between the radiation and last three chemos.

    you said you had a hard time finding this site.  If you google CSN ( Cancer survivors Network) and lick on the discussion boards and then Uterine, you should get to this site.   Then put it in your favorites, or bookmark it.

    on the top of the uterine discussion board there are boxes for " keywords or titles".  If you type Doxil in one of the boxes you will get posts from some that have been on Doxil.  You might want to do that on the Ovarian Board also.  There have been more ladies on Doxil on the Ovarian board.

    my doctor has mentioned Doxil if needed in the future, but luckily I have not needed it.  Many talked about problems with " hand and foot" sensitivity and peeling of skin.

    I am glad that overall you feel good.  Your body has been through a lot.  Wishing you the best with further treatment.  In peace and caring.   Please come back and let us know how you are doing.

    platinum resistance

    Hello Ro and AWK,

    Thanks for your support.  I'm still having trouble navigating this site and finding where we left off.  I may have misspoken.  I have grown hair between chemo treatments; just not enough to be able to use a hair brush.  I let my fingers do the walking.  After the first round of chemo I took megesterol, after the second round it was tamoxifen and now I'm on letrozole.  I don't know if it is the letrozole or old-age osteoarthritis, but bone, joint and muscle pain are a real problem.  I consider myself a "young" 67, but I've had back problems since I was a teen and had a spinal fusion in 1965.  If anyone else has a problem with muscle cramps, I strongly suggest Tonic [quinine] water.  The quinine really helps and if it will work for you, it works quickly.

    I've had neuropathy in my feet since the first chemo, but thankfully it has been lack if feeling rather than burning or pain.  When I get in the car I have to position myself to make sure I'm firmly in front of the gas and brake pedals.  I have never felt out-of-control but I am aware of my limitations.  The neuropathy has migrated to my hands, but I can still sew on a button.  Prior to the cancer, I made the first 5 grandchildren really fancy needlepoint Christmas stockings.  I'm trying to figure out what I can do for #6 and it looks like he'll have a sibling in less than a year.

    I am not a doctor or a nurse, but I had a really wonderful 32 year career in pharmaceuticals.  Most of those years were spent in sales and sales training so I am what doctors consider "dangerous".  After my surgery I asked for a copy of my pathology report because I was getting conflicting results.  My oncologist was trying to protect me from the worst of the results.  Not everyone wants to know the whole story, but If you do, you own those reports.

    I am happy to say I have had a rich and fulfilling life, even if I'm not ready to say good-bye just yet.  The most important thing is having peace in your heart.

    Maggie

     

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #25
    Just got UPSC diagnosis

    Had BC 20 yrs. ago - healthy until Dec.  Now looking at surgery on Monday to see if has spread from uterus. Wondering at my age,77, if I want to do the chemo thing again?  Any advice?

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #26
    Donna,

    Donna,

    I would take this one step at a time. You won't know your staging until after surgery. Let's hope this was caught early and is contained.

    Also, chemo treatments have improved a lot from 20 years ago. They still are not easy, but they are more doable. There is a thread titled 'Ladies Going Through Chemo' that has a lot of information that may help you. Several of us documented our journey.

    Also, welcome to our board and please come back and let us know how you are doing after surgery. I hope it all goes smoothly and you recover quickly.  So sorry you are having to face this beast. We are here for you!

    Love and hugs,

    Cindi

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited January 2017 #27
    Hi, Donna

    I'll be with you in spirit Monday.  Don't even think about the chemo decision yet.  I will tell you I met a very spry 90 year old at my MD office who was doing well with chemo at the midpoint of treatment.  We are all different and there are no hard and fast rules.  Good luck.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #28
    Hi Donna,

    I'm so glad you found this group and asked your question.  I echo what Connie and Cindi have both said.  You are obviously a very strong person with what you've been through already and look at all the wonderful life you've had, the memories you've made all because you faced treatment and marched forward.

    You can do it, whatever "it" turns out to be.  One day at a time, one step at a time.  We are here to link arms with you and walk along together.  Come ask you questions, share your concerns- there are SO MANY smart caring ladies who have already been there.  I do hope you'll keep us posted.  We'll be praying for and thinking about you - especially on Monday!  (((HUGS)))

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    edited January 2017 #29
    Donna, believe in yourself!

    Dear Donna, 

    I don't post much any more on this board- not because I don't care but because I care deeply. And it has at times made me grieve. We have lost women here who I became fond of. It has saddened me to the point that I needed to withdraw. This may seem inconsequential, but I was forever changed by my psychology professor in graduate school- an existential psychologist- who said to me that " I should never get so close to another person that I need to back away." Well, that's easier said then done.

    I have tried to do as he said, but it is not in my character. I have been a social worker working with dying people, a therapist in an outpatient mental health center and a resource specialist working with special ed students in a middle school, to name a few of the hats I've worn in my 44-year career. And you know what? I still connect emotionally with others and I still grieve. Emotional intelligence matters to me- I won't live my life any other way!

    Donna, your journey has only just started and until you have your surgery and the removed tissue is evaluated in the lab, you don't know what your prognosis is or what the recommended treatment will be. Don't give up hope! I am sorry that you are facing this, but you have come to the right place for support. The courageous women here are wonderful and supportive.

    I thought I would have succumbed to this disease by now, but now over 3 years out from my surgery I am still here and doing great without a recurrence. I was diagnosed with UPSC stage 3a. This is terrifying, I know, but hang in there! You have lived and learned for 77 years- you can do this! Chemo was doable and it will be doable for you if it is recommended. My montra: My body is stronge and healthy!! In 2016, I swam 257 miles at the local pool here in Florida. I believe in my heart that exercise has so far saved my life. Consider exercising if you don't already  do so.

    Warm Wishes for a good outcome,

    Cathy

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited January 2017 #30
    THANKS SO MUCH!!

    I am so glad I found this group! 20 years ago I started a support group when I had BC and we grew to 50 members. Men and women all sharing the trip down the C road together. So much easier.  I do have this bad habit of jumping way ahead of where I am! So, your advice was good to tell me - One Day at a Time! I am a horse rider so am very active and just hate to think of not doing that. All of your stories are so encouraging. Thank you so much!

     

     

  • Sandrine04
    Sandrine04 Member Posts: 76
    edited January 2017 #31
    Hello

    Je stage4 with métastases in the péritoine ... Qui d'Autre?

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited January 2017 #32
    surgery

    Surgery went very well - this laposcopic robotic surgery is amazing. I am feeling good and being pampered by family and friends. The lab results will come back later this week so will see what we will see. Thank you all for being on this site.

    DF

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    edited January 2017 #33
    Feeling good

    is great.  Thanks for letting us know.  Be sure to take it easy.  Your outside doesn't reflect all that happened on your inside.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #34
    Donna, Glad surgery went well

    Donna, Glad surgery went well. Thanks for letting us know and please give us an update when you get your results back.

    Hoping for the best possible news for you.

    Love and Hugs,

    Cindi

  • Nellasing
    Nellasing Member Posts: 528 Member
    #35
    Donna that is great news!

    Thank you for coming back and sharing that with us- it's always so good to get good news!  Ditto what everyone has said about being gentle with yourself so you will heal completely with no complications.  It was still a big deal to your body.  Sending you peaceful thoughts as you wait.  (((HUGS)))

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited February 2017 #36
    pathology

    I had no cancer outside of the uterus; 1A staging which was grateful news. I see the doctor on 3/3 for post surgery check and to discuss what she thinks is best follow up - observation or treatment.  I am feeling good and have resumed tutoring a child with chronic illness. She inspires me. Thanks again to all of you here.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #37
    Donna Faye said:

    pathology

    I had no cancer outside of the uterus; 1A staging which was grateful news. I see the doctor on 3/3 for post surgery check and to discuss what she thinks is best follow up - observation or treatment.  I am feeling good and have resumed tutoring a child with chronic illness. She inspires me. Thanks again to all of you here.

    YAY Donna!!!!

    A Win for today!!!!  So glad it was contained and your staging was 1A.  We'll be looking for your update in March as you see how things are and what they think treatment should be.  Glad you are feeling well.  It's amazing you are already tutoring a child- I'm sure you are good for each other.  (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #38
    Congrats, Donna. Although no

    Congrats, Donna. Although no cancer diagnosis is good, 1a is about as good as it gets. Hopefully you are continuing to heal well and are feeling stronger every day. Good luck to you and try to celebrate this good news! 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #39
    Excellent news Donna! Glad

    Excellent news Donna! Glad you are healing well from your surgery too. I found I felt a lot better between week 3 and 4 post surgery. Please come back and let us know what your next steps are going to be!

    Love and Hugs,

    cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    #40
    Woo hoo!

    Great news!  I'm so happy you are feeling well enough to be tutoring.  Giving back and away is just the best therapy.

  • BenitaM
    BenitaM Member Posts: 1
    #41
    MOM's UPSC

    My mother was diagnosed with UPSC, stage III January 14th, 2016 after spotting (she was 77 when she was diagnosed). She had a full hysterectomy following diagnoses and 25 lymph nodes removed in which three of them had cancer cells. She went through approximately 6 month of treatment with 3 sessions of chemo, three weeks apart, followed by 28 days of radiation, followed by 3 more sessions of chemo. She finished treatment in August and because of the toll it took on her body, the doctor wanted to give her a break after saying he saw no traces of cancer. He did see a spot on her hip, however he thought it may be traces from the radiation treatment but that he would see her in 3 months to give her body time to heal.  Fast forward to November's CT scan and the spot that was on her hip was indeed the cancer spreading to her hip/pelvis area. The doctor decided to treat her with chemo that wasn't as intense as the initial sessions. She also had fluid surrounding her lung which was drained. The doctor wanted another CT scan done (which she had Feb 20th, 2017) to see if this round of chemo treatment is helping to contain the cancer cells within her pelvic area. We go back later today to find out if the cancer cells have spread. Very stressed as the doctor's overall prognosis isn't good. Of course my mother doesn't understand how we got her after being healthy most of her life. Prior to this life changing event, the last time she was in the hospital was when she had me 48 years ago. Praying that the cancer cells are contained and that she she can continue the chemo treatments. The great thing about it is her spirit is up and she has a strong belief in God. That helps to keep her going. She is tired and of course has lost weight throughout this process. I'll continue to post here as it helps me as well. 

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