Reoccurrence of UPSC

2

Comments

  • Soup52
    Soup52 Member Posts: 908 Member
    edited October 2016 #22
    So unfair! My prayers are

    So unfair! My prayers are with you!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    God be with you

    God be with you on this unwanted journey. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Oh, Jane.  I am so sorry to

    Oh, Jane.  I am so sorry to hear this for you.  Like Lou Ann, my heart is heavy.  Hugs dear one.

  • ryee21
    ryee21 Member Posts: 21
    So sorry!

    Five years at stage 1, then a reocurrence?? I don't get it.   Did they use taxol/carbol then and radiation? May I ask what kind of diet did you do for the past 5  years.  Sorry if this is too personal but I am stage 2 and torn to do chemo. Hope to hear from you. Roni

  • cheerful
    cheerful Member Posts: 261 Member
    ryee21 said:

    So sorry!

    Five years at stage 1, then a reocurrence?? I don't get it.   Did they use taxol/carbol then and radiation? May I ask what kind of diet did you do for the past 5  years.  Sorry if this is too personal but I am stage 2 and torn to do chemo. Hope to hear from you. Roni

    Hi Roni:

      Thanks for your e-mail.  Yes, I have a reoccurrence after 5 1/2 years. It is a "shock" to say the least.  I went over 5 years with "NO evidence of disease, and then in August, my CA 125 level was at 134 so I knew something was amiss.  I then had a Cat scan the end of August which showed No evidence of disease and then I had a repeat CA 125 in Sept it was at 83 so it went down a little, then it went back to 134 again and then I had a Pet Scan the middle of October and it showed some small ascites and a small spot on my spleen and pelvic area were found.  So I saw my oncologist on Monday, October 24th and I was diagnosed with a Reocccurrence.  I thought going for over 5 years I would remain cancer free, but no such luck obviously.  

      I did see my family doctor today and I mentioned what has happened since I last saw him in Sept. He thinks from my original diagnosis from 5 years ago when I was going through carboplatin and toxol during my six treatments, I went through the standard six treatments of carboplatin and taxol and that I should have had another treatment or two as these malignant cells were in my bloodstream and just recently "resurfaced". Those are my family doctor's thoughts.  I did go through three brachytherapy treatments after the chemo was over the end of August 2011. 

      Anyway, I am scheduled for a short procedure for this coming Wed. the 23rd in the afternoon to have a "port" put in and then I will start chemo the following Wednesday, the 30th. I will be getting three drugs, carboplatin, taxol and another drug called Doxil. I will be going for chemo every week for 3 weeks and then have a week off.  When I went through my 6 treatments in 2011, I had chemo done every 3 weeks.

      My oncologist wants to treat it very aggressively and he was also aggressive the first time as well.  My oncologist did mention to me that I can get another 2nd reoccurrence and there is a "high" chance of a relapse. I will do everything I can to prevent this from coming back on me that is as much as I can do.  I just want to continue to eat healthy and continue to eat better as I have been doing.

      My diet consisted of good foods. I did not eat ham, sausage or bacon in the past 5 years - I do have bologna on occasion.  I do not have fried foods because I have atherosclerosis and on occasion I do have french fries, but if I make them from home I put them in the oven. Only once in a great while will I have french fries in a restaurant.

      I also had a Ischemic stroke in May of 2015. I since then lost 80 lbs since I cannot have over 2,000 of miligrams of sodium as the average person can have because I am on a blood thinner and I was also diagnosed with atrial fibrilation. I can now have 1,500 of miligrams of sodium in a day. I now weigh in the low 140s and I do feel so much better and stronger.

     I would definitely, without question, go through chemo. Your cancer "will" come back on you if you do NOT have chemo. Any stage of our cancer, the cancer can come back it really does not matter. My oncologist did mention that it comes back on a large amount of women.  Anyway, our cancer is a "very aggressive" cancer. Do Not leave it to chance.

     If you have any more questions, you can e-mail me on the Board.  Thanks.

     Good luck with your decision - I do hope you decide to have the chemo done whatever number of treatments they want you to have.  

    Cheerful

    a/k/a Jane

  • ryee21
    ryee21 Member Posts: 21
    thanks for responding..

    and the enouragement.  I have health issues too.  Yes, they want to do the taxol/carbo 6 rounds every 3 weeks and 3 rounds of radiation.  they claim it will prevent recurrance at 80-90% but I wish I felt as optmistic as you.  I had a full hystrectomy and it sounds like you did not (or did you?). The problem is my lympth nodes are clear and to date the cancer is not there.  I do understand the loose cells can be there and the risk reoccurance.  However, I read and seen videos of people fighting cancer through changing body biology and doctors talking about it.  I am going to call around. I know this is silly but did you try cold caps?  My doctor mentioned it and it seems like a  hassle but  helps with shock value?

    I am really sorry this happened to you.  I feel stupid bothering you with my inital treatment. I worry that the doctors don't know enough of this disease.

    thanks Roni 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Roni,

    Roni,

    I agree with Cheerful. Serous is very aggressive and requires aggressive treatment. I had Stage 1A and had chemo and brachy therapy. My oncologist said they take serous, seriously.  Everyone has to decide what they can live with. For me, I wanted to do everything I could to have a chance at NED.  You know, you could do the recommended treatment and stop it if you find it to be too much for your body... Worth consideration?

    I hope you find a balance that works for you soon. It sounds like you are really struggling with what to do.

    Love and Hugs,

    Cindi

  • Nellasing
    Nellasing Member Posts: 528 Member
    Cold Caps

    Hi, you keep mentioning these.  I thought I'd just share that someone offered to purchase the service for me.  When I spoke to my gyn/onc about it she wasn't in favor because there is the opinion out there that it may protect some of the free cancer cells just as it is protecting the hair cells.  It would have been a HUGE hassle because you have to have a special freezer and change the thing every 20 min or so.  My husband and I decided that it just wasn't worth it because my treatment took about 4 1/2 hours and I had enough to think about and do without messing around with that.  I got a bunch of really cute pre-tied head wraps and hats and off we went.

    I finished chemo Carbo-Taxol 6 rounds on Sept. 21st and I already have not only peach fuzz but actual hair which is getting thicker by the day- it's not long but hey- it's growing every day- they don't call them the fastest growing cells in the body for nothing ;)

    Also, you will find that for most of us the first thing that happened was a hysterectomy- mine was radical with everything out and no node involvement.

    You may also find it interesting that I also was really set against chemo because I had surgery and nothing had spread outside- I thought I was FREE-but because I have a Naturopath, that I have worked with for years and trust,  who told me as I was trying to decide that the integrated approach has always been more successful in her experience, I decided to do it.  We started a program of supplements and acupuncture to lessen the side effects and keep my healthy body healthy while the chemo took care of those fast growing cells.  We were careful to stop 48 hrs before and wait for 48 hrs after with supplements so it didn't interfere, but I got acupuncture 4 days before and the day after chemo each time.

    Prayers that you find the path that is right for you and that you find peace.  Once I had a plan and began walking forward I felt much better.  (((Hugs)))

  • cheerful
    cheerful Member Posts: 261 Member
    ryee21 said:

    thanks for responding..

    and the enouragement.  I have health issues too.  Yes, they want to do the taxol/carbo 6 rounds every 3 weeks and 3 rounds of radiation.  they claim it will prevent recurrance at 80-90% but I wish I felt as optmistic as you.  I had a full hystrectomy and it sounds like you did not (or did you?). The problem is my lympth nodes are clear and to date the cancer is not there.  I do understand the loose cells can be there and the risk reoccurance.  However, I read and seen videos of people fighting cancer through changing body biology and doctors talking about it.  I am going to call around. I know this is silly but did you try cold caps?  My doctor mentioned it and it seems like a  hassle but  helps with shock value?

    I am really sorry this happened to you.  I feel stupid bothering you with my inital treatment. I worry that the doctors don't know enough of this disease.

    thanks Roni 

    Hi Roni:

       I did not have a full hysterectomy over 5 years ago.  My lymph nodes were all left in as well as my omentum. My oncologist wants me to have surgery to remove the omentum and also the spleen since this is where the cancer has reoccurred in my pelvic area and my spleen.  My cancer is not in my lymph nodes thankfully. This surgery will be done down the road.  At the time over 5 years ago when I had the hysterectomy my gynecologist who did my surgery did not know I had cancer so that is why the omentum was not removed. It was after my surgery that the cancer was found. But I did mention this to my gynecologist a few months before that I felt this was cancer and I was so right since I had a lot of bleeding in 2010 into 2011. I bled for a litle over 6 months before I had the hysterectomy so mine was found in an early stage - stage 1 at that time.

      I never tried cold caps.  No one can be more sorry than I am and it is Unfair especially after 5 years that this cancer would come back on me.  I have come to accept my diagnosis and to move on and to finally beat this beast down!  I always knew there was a chance of reoccurrence, but as time wore on, and every time I left my oncologist's office and he said everything was fine, I breathed a sigh of relief.  

    But in October, it was a devastating diagnosis and I really was in shock.  I am just grateful that the cancer did not hit any of my vital organs like my kidneys or my liver that would be so much more devastating and the outcome would not be good. At least now, I do have a good outcome so it is well worth fighting for having chemo and I do have a lot to live for.  Chemo is definitely the standard treatment.  I did very well going through chemo the first time around. Now I am hoping I do as well since another chemo drug will be added Doxil.

       My husband is wonderful and very supportive and he will be taking me to All my chemo treatments.  My son was at my first set of chemo treatments and went to a few of them with me the first time. Now my son is in college and has another year left before he graduates from college. So there is a lot to live for especially for myself, my family and my friends.  I am truly blessed and fortunate that I have wonderful and supportive family and friends and are praying and rooting for me.

      My oncologists (two of them) seem to know a lot about this disease.  Please do not feel bad asking me about the chemo.  I also know a lot about our cancer since I have read a lot about it and have dealt with it over 5 years.  It is a very sneaky cancer for sure and it is Very aggressive.

      Please definitely consider getting the chemo. You will highly regret not going through it and it can kill you if you do not go through with it. My radiologist from 5 years ago told me there was a woman that did not have chemo and she had stage 1, it came back on her, she went through chemo and later passed away a few years ago. And this was stage 1.  So you really should definitely go through chemo. Even if you cannot tolerate it, at least get 3 treatments done it will be better than nothing, although the standard is six treatments of chemo.  Good luck with your decision.

    Cheerful

    a/k/a Jane

  • MAbound
    MAbound Member Posts: 1,168 Member
    My experience with hypothermia

    Hi Roni,

    I didn't find out about cold caps till after my first chemo treatment, so I didn't have a chance to try them. Amazon sells them for about $90 or $100 each and they stay cold for about 40 minutes each. You'd need several caps to last through however long the infusion of your chemo drugs last (not the preliminary drugs, though) plus 20 minutes before and after added to that time. You can use a cooler and either dry ice or bags of ice to keep them cold enough during transport and till you use them. It can be a hassle, but worth it if keeping your hair is important enough of an issue to you to also incur the expense of it. I actually had an ice bag on my head a lot during infusions and between to deal with hot flashes and managed to hang on to a thick, if short thatch of hair on the top of my head. My oncologist said he's seen it work hit or miss as far as keeping all of your hair. I've heard of the service where one cap is kept cold all through an infusion, but thought service costs in the neighborhood of $2-3,000.00 for 6 treatments. Yikes!

    I used both the hypothermia slippers and mittens during infusions after I developed neuropathy from the first treatment with Carbo/Taxol. If anything was worth the expense, it was those slippers because they also helped me to cope with that pain between treatments and kept it from getting any worse. I'm not sure why it works, but suspect the cold calms down the damaged nerves. I was so exhausted from not being able to sleep from the pain at night until I got those slippers. The mittens I only wore during infusions because my hands weren't as painful for me as my feet were although my sense of touch was really gone.

    My husband was always with me for chemo and you really do need help with changing caps or slippers during infusions. Wearing the mittens leaves you pretty helpless for doing anything for yourself, too. I had 4 pairs of slippers and 4 pairs of mittens and at first we used dry ice (a quarter block would last from the afternoon the day before till the day after treatments) to keep them cold in a large cooler and used a 2nd smaller cooler and bags of ice to bring a pair or two inside as we needed to change them. The dry ice almost made the slippers too painful to wear, but I was able to push through that. Towards the end of chemo, we stopped with the dry ice and just used a lot of bags of ice to keep them cold and that still seemed to work and made it easier. At home, between uses, we kept everything in our chest freezer which seemed to make them colder than our refrigerator's freezer did.

    In the scheme of things, it really wasn't so terrible to lose most of my hair. I never shaved it, just cut it short when it got really thin and I never really lost it all so I had some protection for my scalp. That made it real easy to throw on a hat or wig, which I only wear when I go out. Hypothermia isn't cheap, so if a person has to prioritize what to get, my vote would be for the slippers. Neuropathy pain can be a lot more intense, unrelenting, and painful than what you get warned about prior to treatment and traditional pain drugs really don't help. I've been really grateful that the slippers helped without having to resort to taking anti-seisure or anti-depressent drugs that might have helped. I didn't like facing the potential side effects those drugs had and the less pills I needed to do take during chemo the better for the issues with heartburn I had.

    My oncologist had no issues with me using hypothermia during infusions. Other oncologists may differ. I was desperate enough from the pain I had to take the risk, if there is any. That's a decision you'll need to make for yourself with your caregivers.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited November 2016 #32
    cold caps and cold feet

    i think,that Red Corvette's wife used the cold caps with success.  I asked my Onc about them recently, not because I was interested in them for me, Losing my hair was the least of my worries and I kind of found it fun to buy a new hat every once in a while.  I saw something on CBS about them and asked what he,thought.  He said that they were a little bit of a pain because they had to be changed often and that the,infusion had to be given over a much longer time to be effective, past the normal.hours that the cancer Center was open.  As far as ice booties and mittens, my cancer center provided them to,use during infusions and I used the booties.  My first 6 infusions were at a different place and they did not use them.  I had neuropathy when I,started here and it has not gotten any worse thanks,to,the.booties..  it was hard enough for me to,keep the,ice on my feet for four hours can't imagine how having it on my whole head for that long would feel.

    Hugs and prayer, Lou Ann

  • TAyers
    TAyers Member Posts: 86 Member
    edited November 2016 #33
    Jane,

    Jane,

    My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

    Tami

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    edited November 2016 #34
    Tami

    good luck

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    edited November 2016 #35
    TAyers said:

    Jane,

    Jane,

    My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

    Tami

    Tami, I wondered how you have

    Tami, I wondered how you have been doing.  Please let us know how you everything goes. Prayers for you, as well as all the women on these boards.

  • KTMay
    KTMay Member Posts: 25
    edited November 2016 #36
    TAyers said:

    Jane,

    Jane,

    My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

    Tami

    How disappointing 4 years out

    I was diagnosed with stage 3c in May (I am 66 and healthy despite the cancer) and after CAT and PET scans in October the cancer is being called "recurrent" serous carcinoma because it has spread to abdominal areas (lymph nodes and soft tissue)--four rounds of carbo/taxel did not contain it to the pelvis area apparently. I would be interested in what chemo treatments you used in the past to give you 4 years if you would be ok with sharing your chemo treatments. I am unsure how to decide the next set of chemo treatments since my doctors say there is no clear winner--sounds like trial and error. Looking for some real life practical examples of chemo treatments that at least provide some sort of NED period when one is resistant to standard carbo/taxol protocol. Thanks in advance and best of luck of you. We will be interested in your progress.  KTMay    

  • Red Corvette
    Red Corvette Member Posts: 114 Member
    edited November 2016 #37
    Lou Ann M said:

    cold caps and cold feet

    i think,that Red Corvette's wife used the cold caps with success.  I asked my Onc about them recently, not because I was interested in them for me, Losing my hair was the least of my worries and I kind of found it fun to buy a new hat every once in a while.  I saw something on CBS about them and asked what he,thought.  He said that they were a little bit of a pain because they had to be changed often and that the,infusion had to be given over a much longer time to be effective, past the normal.hours that the cancer Center was open.  As far as ice booties and mittens, my cancer center provided them to,use during infusions and I used the booties.  My first 6 infusions were at a different place and they did not use them.  I had neuropathy when I,started here and it has not gotten any worse thanks,to,the.booties..  it was hard enough for me to,keep the,ice on my feet for four hours can't imagine how having it on my whole head for that long would feel.

    Hugs and prayer, Lou Ann

    Cold Caps

    My wife had good success with Penguin Cold Caps and never went bald. She did loose hair but she had a lot to start with. We also kept Mrs. Red's hands and feet in ice water during the infusions and she came through chemo with no neuropathy at all. It's tough and unpleasant being in ice for 4 hrs. Not pleasant but just a question of how much do you want to do to keep some hair and ward off neuropathy. For us the cold caps were a lot of work but it kept us busy and the infusion time flew by. It's not for everybody but we had a good experience and great results. Good luck!! Let me know if you need more specific info.

    Red

  • TAyers
    TAyers Member Posts: 86 Member
    KTMay said:

    How disappointing 4 years out

    I was diagnosed with stage 3c in May (I am 66 and healthy despite the cancer) and after CAT and PET scans in October the cancer is being called "recurrent" serous carcinoma because it has spread to abdominal areas (lymph nodes and soft tissue)--four rounds of carbo/taxel did not contain it to the pelvis area apparently. I would be interested in what chemo treatments you used in the past to give you 4 years if you would be ok with sharing your chemo treatments. I am unsure how to decide the next set of chemo treatments since my doctors say there is no clear winner--sounds like trial and error. Looking for some real life practical examples of chemo treatments that at least provide some sort of NED period when one is resistant to standard carbo/taxol protocol. Thanks in advance and best of luck of you. We will be interested in your progress.  KTMay    

    Chemo

    I had carboplatin and pacilitaxol. Along with 28 rounds of radiation And tons of prayers. Maybe my body did well using those three things. I am glad yours did not.I shall see after Dec 1 the true pathology.

  • cheerful
    cheerful Member Posts: 261 Member
    edited November 2016 #39
    TAyers said:

    Jane,

    Jane,

    My heart literally breaks for You. I was stage 3 c when diagnosed and I am 4 years out. I am looking at a recurrence too. I have a lung nodule they were following and then had a Petscan and it showed up hot. Thankfully so far no where else. I am having surgery Dec 1 to remove it and we shall go from there. My youngest son is 23. I will be praying for you.

    Tami

    Hi Tami:

      Thanks for your e-mail.  I wish you all the best with your surgery on December 1st. I will say some prayers for you as well.  Please do keep in touch on the board.

      It was a devastating and shocking diagnosis for me in October. It took me a few days to accept the diagnosis.  Anyway, I am getting a port put in this Wednesday and will start chemo on Wed., December 7th. My first chemo will be 6 hours long and then 2 hours for all the other chemo treatments.  I will be undergoing chemo for 2 years, it is a very, very long time, but my oncologist said I should have breaks in between.  I just hope I can keep my strength up and have encough stamina and energy so I can get through the treatments.

      I will check the Board and continue posting through my treatments.  

      Thanks to everyone for responding - I have such wonderful support from all you ladies.  

      Tami, can I ask what state do you live in? I live in PA in the suburbs of Delaware County, which is about a 50 minute ride by train into Philadelphia. 

      Anyway, good luck with your surgery on December 1st. Also, Happy Thanksgiving to you and your family.

    Cheerful

    a/k/a Jane

  • TAyers
    TAyers Member Posts: 86 Member
    cheerful said:

    Hi Tami:

      Thanks for your e-mail.  I wish you all the best with your surgery on December 1st. I will say some prayers for you as well.  Please do keep in touch on the board.

      It was a devastating and shocking diagnosis for me in October. It took me a few days to accept the diagnosis.  Anyway, I am getting a port put in this Wednesday and will start chemo on Wed., December 7th. My first chemo will be 6 hours long and then 2 hours for all the other chemo treatments.  I will be undergoing chemo for 2 years, it is a very, very long time, but my oncologist said I should have breaks in between.  I just hope I can keep my strength up and have encough stamina and energy so I can get through the treatments.

      I will check the Board and continue posting through my treatments.  

      Thanks to everyone for responding - I have such wonderful support from all you ladies.  

      Tami, can I ask what state do you live in? I live in PA in the suburbs of Delaware County, which is about a 50 minute ride by train into Philadelphia. 

      Anyway, good luck with your surgery on December 1st. Also, Happy Thanksgiving to you and your family.

    Cheerful

    a/k/a Jane

    Jane,

    Jane,

    I live in Girard Pa, 15 miles outside of the city of Erie Pa. ( Right along the Lake). Keep in touch. I will message you my contact info.

    Tami

  • lovemycurls
    lovemycurls Member Posts: 1

    Cold Caps

    My wife had good success with Penguin Cold Caps and never went bald. She did loose hair but she had a lot to start with. We also kept Mrs. Red's hands and feet in ice water during the infusions and she came through chemo with no neuropathy at all. It's tough and unpleasant being in ice for 4 hrs. Not pleasant but just a question of how much do you want to do to keep some hair and ward off neuropathy. For us the cold caps were a lot of work but it kept us busy and the infusion time flew by. It's not for everybody but we had a good experience and great results. Good luck!! Let me know if you need more specific info.

    Red

    Cold caps

    HI! I start my first chemo treatment on 12/21. I too will be using the Penguin Cold Caps. They told me keep using the caps for 4 hours after my treatments. Keeping my as much hair is important to me, that seems like a long time tho.Is that how long your wife kept them on after treatments? PLease, any advice would be appericated.