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Reoccurrence of UPSC

cheerful
Posts: 237
Joined: Apr 2011

Hi Ladies:

  I have some bad news to mention.  I was diagnosed with a reoccurrence of UPSC (I initially had stage 1 in February of 2011 so it is over 5 years).  My CA level has been 134 since mid August so I had a Cat Scan done the end of August and I had a Pet Scan done on October 12th and that is where the cancer has shown up. The cancer is found on my spleen and in my pelvic area it is a small spot.  I am going for blood work tomorrow and an ascites test on Wed morning then I go back and see my oncologist next week.  I found out today that my cancer has returned.

  I know the normal range for the CA level is up to 35 so this I knew was much higher.  Anyway, I found out this morning and it was a shock and upsetting to say the least especially being a little over 5 years.  Anyway, I always knew there was a chance for reoccurrence.

  I will need chemo and will have to go once a week for 3 weeks and then have a week off.  After I meet with my oncologist next week, I will find out how soon I will start the chemo which will probably be sometime in November. The chemo treatments will last a long time for about a year.  I do have a good prognosis or outcome.  

  Anyway, I wanted to let you ladies know about the reoccurrence.  I will keep you informed and will post.

Cheerful

a/k/a Jane

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

My heart is aching for you.  I am so,sorry to,hear this.  You made it through this once and you can do it again, but is so unfair that you have to.

Hugs and prayers, Lou Ann

cheerful
Posts: 237
Joined: Apr 2011

Hi Lou Ann:

 Yes, this is really bad news, however, your right, I made it through once and I will do it again. Although the chemo will be much longer, I will get through it.  At least I know there is a good outcome so I will remain hopeful and optimistic.

Cheerful

a/k/a Jane

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1433
Joined: Jun 2015

Jane, So sorry to hear this! We all shoot for that magic 5 years to have permission to let our guard down. DANG IT!  Please let us know what you learn next week. You have a fantastic attitude and will do this with flying colors. Please come back for support as you move along this next journey.

Love and Hugs,

Cindi

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

So sorry to hear this news but keep the positive outlook as you said I beat i t once I can do it again. Praying for good outcome. Trish

MAbound
Posts: 687
Joined: Jun 2016

Cheerful, your screen name seems so apt. You seem to have such a positve attitude in spite of recieving news that none of us want to hear, especially after reaching that magic 5 year mark. I'd be screaming and throwing a real hissy fit! I'm so glad to hear that the prognosis for you is good though a year of chemo sounds a bit daunting. Don't be a stranger here if you need anything. God be with you.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

That has to be a shock to hear after 5 years.  But, you've got a plan, the prognosis is good, and you're keeping your eyes on the prize.  

Peace and strength to you.

Chris

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I'm sorry you got this news, but I'm impressed by your attitude and hope it will only be a temporary setback.

janaes
Posts: 692
Joined: May 2016

Im so sorry!!

EZLiving66's picture
EZLiving66
Posts: 1273
Joined: Oct 2015

(((Jane))) I'm sorry to hear this but, as you said, you've done this once and you can do it again!!  Thankfully they are coming up with new, more effective treatments all the time.  Keep us updated!!

Love,

Eldri

Nellasing
Posts: 529
Joined: Oct 2016

truly this is just such a shock and it deeply affects me as I am sure it does everyone - just so unfair and inexplicable.  My prayers join with our sisters as you muster your courage and march forward.  Please do keep us posted.   (((HUGS)))  <3

sshhaarrii
Posts: 36
Joined: Oct 2016

I'm so sorry to hear this. And after 5 years, how can this be? Darned UPSC!

BUT obviously you're stronger than this cancer. You beat it once already. And have a good prognosis, so very happy to hear. 

I'll be thinking of you!

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

I am so sorry to hear of your news.  Keep up the strong attitude and you are in my prayers to beat this once again.

Jerri

cindy0519
Posts: 173
Joined: Nov 2015

So sorry to hear of the return of the beast!  I can imagine how shocking it must be after 5 years of clear.  Your attitude is amazing! Between that and a good prognosis you are armed and ready!

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

We are here for you, Jane. You can rant or scream or cry or whatever it is you need to do here and we will support you. Wishing you continued hope and strength, Kim

cheerful
Posts: 237
Joined: Apr 2011

To The ladies who responded to my post for reoccurrence - I thank all of you for responding and wishing me the best. I so appreciate it.

Yes, after 5 years, it is a "shock" to say the least and my Mom who is 93 is devastated and heartbroken that I have this reoccurrence of cancer.  My husband and son (my son is 22) are also very sad for me, but my husband will be at my chemo treatments with me so that will be a real comfort for me.

 

 I will post and let you know what is happening with my chemo treatments.

 Again, thanks to all of you for responding.

Cheerful

a/k/a Jane

 

I am really "overwhelmed" from all of you that responded. This is such a "great group of women" I am so glad I stayed in constant contact through the years on this board.

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

Oh Jane, I'm so saddened to hear this news. Please know your in my prayers for the best possible outcome......kicking this cancer to the curb where it belongs! Stay strong......we are all behind you and part of your journey.

Much love and big hugs for you, dear one! 

brissance's picture
brissance
Posts: 192
Joined: May 2016

I am so sorry that you have this struggle ahead of you but then again I look at you and your words and I just know you have that extra spark that will enable you to fight and WIN this battle.  You are strong, smart and grounded.  You have so much support right here on this board that prayers won't end.  If anything at all we can do, please let us know.  God bless and know you will go on to victory.  

artist49
Posts: 86
Joined: Oct 2011

So sorry about this news but wishing you a second even longer remission.

What drugs will they be giving you?   Are  you BRCA 1 or 2 positive?

Double Whammy's picture
Double Whammy
Posts: 2821
Joined: Jun 2010

I am so sorry you have to face this again.  And when you had no recurrence for FIVE years?  Not fair.  Best of luck to you that this can be beaten back again. 

Hugs,

Suzanne

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Jane,

Cheering you on as you embark on a year of treatment to whip that dumb thing. Despite the inevitable ups and down, wishing you stamina, peace, and joy. best, another jane

Soup52's picture
Soup52
Posts: 861
Joined: Jan 2016

So unfair! My prayers are with you!

CheeseQueen57's picture
CheeseQueen57
Posts: 741
Joined: Feb 2016

God be with you on this unwanted journey. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2457
Joined: Mar 2013

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

ryee21
Posts: 21
Joined: Nov 2016

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
Posts: 237
Joined: Apr 2011

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
Posts: 21
Joined: Nov 2016

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 

cheerful
Posts: 237
Joined: Apr 2011

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1433
Joined: Jun 2015

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
Posts: 529
Joined: Oct 2016

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)))

MAbound
Posts: 687
Joined: Jun 2016

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's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

Red Corvette
Posts: 105
Joined: Jan 2016

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

lovemycurls
Posts: 1
Joined: Dec 2017

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. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

this is an old thread so you might not get many replies...

i cold capped and kept about 70% of my hair (maybe more). You can see from my photo that it worked for me. I finished chemo in April of 2017 and this photo was taken 2 weeks ago. 

I rented my caps from Wishcaps.com

i put the first cap on one hour before the Taxol started and kept capping for 5-6 hours after. I only washed my hair once a week with a non chemical shampoo (no sulfate), slept on a silk pillow, no haircuts or color, no heat appliances, no elastic hair ties, took Biotin and prenatal vitamin. My best friend came with me to chemo and helped me with the caps.

it is shockingly cold when you put them on but it’s bearable. Bring a blanket because you will get cold. 

I did it with my oncologist‘s blessing and the nurses at the infusion center still marvel at my hair when I go for port flushes.

For me it was important to my mental well being and I work at a high school so it kept the kids comfortable for me to look like myself. I’m claustrophobic and I don’t like wigs or caps or hats on my head so it was a challenge but 8-10 hours of the cap was easier on me than daily wig wearing would have been.

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2457
Joined: Mar 2013

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
Posts: 25
Joined: Nov 2016

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    

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

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
Posts: 237
Joined: Apr 2011

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's picture
TAyers
Posts: 86
Joined: Aug 2012

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

ConnieSW's picture
ConnieSW
Posts: 1351
Joined: Jun 2012

good luck

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