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Anyone out there dealing with a prolonged journey and managing their stress? I am finishing my second year of treatments for UP

AWK
Posts: 364
Joined: Mar 2013

Hi ladies!  My UPSC  was found in Feb 2013 And I was immediately put on Megace.  I had surgery, six rounds of carbo/taxol, 28 radiation, three brachytherapy.  At my first three month check up five mets were found spread out through out from my heart to liver, diaphragm and two near my spine all are inoperable and irradiatable.  I was put on Doxil immediately, after three months scans revealed two mets grew, two remained the same and one shrank.  Now considered platinum resistant after assays and put on Avastin regime which thus far - has me stable with nominal growth and no new tumors to date.  I see my doctor Monday for new scan results and another treatment.  Awaiting genome testing to determine what my cancer dna is and hopefully come up with a signature cocktail to treat me.  

I am posting to to see who else out there is on a longer journey like this?  I continue to work a demanding job while going through treatments this year and am now officially burnt out.  The stress is showing lately and it would be great to connect with people who have also been on a longer journey of treatment to see how they successfully manage it and if they are working, ideas for that as well.  

I am typically a positive open and joyful person which really carried me until the last couple of months.  Now I am just burnt out.  And my friends aren't sure what to do either.  No one expected the journey to continue like this, no break with NED.  I do have an amazing husband but I worry about him too.  I am lucky but just a little overwhelmed.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

AWK, I do think there are women on here who have been fighting quite awhile, and I hope they chime in.  I would recommend finding an outlet to reduce the stress.  I think stress was part of why I developed cancer and try to "let things go" as much as possible. 

Continually fighting as you have, has to be exhausting.  A break would be welcome for you and I will pray that your treatments show improvement and you get that break.

Peace to you.

AWK
Posts: 364
Joined: Mar 2013

I konw stress is possibly one of the worst things for this.  I decided to reach out to a therapist who I met with when I was diagnosed.  One hour with her really turned my head around on everything and she was able to put a name to the situation - Orphan Cancer.  Which UPCS is and explains why it is so hard to find people locally with it.  So seeing her is probably a good idea.  And continuing to do things I enjoy like riding and getting out - walking my dogs and spending time with friends and family.  I realize I have been so beat that it has just been work and cancer.  Althought I did start riding a couple of months ago which helps.

Cheers to you and thanks for the encouragement!  Anne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Good Morning, Anne,

I have come to view UPSC or any serious cancer as a disease that affects both the mind and body.  Having a strong faith or spirituality does help, but it is still a mind game.  Sometimes, when I am thinking about how UPSC can and may shorten my life, I force myself to change the "script" I am thinking about in my head.  I will then focus on something pleasant, such as imagining myself relaxing on a beach blanket watching the ocean and listening to the sounds of the surf and seagulls.  That helps.  I am especially pleased when I can completely forget about cancer, even for a short while.  I know that you have a demanding job and I suspect that while working you probably don't have the time to think about your cancer.  That's all good, Anne.  I also think seeing a therapist is a great idea as she can give you mental/physical exercises to help reduce stress (such as progressive relaxation techniques).

Hang in there, Anne.  I am rooting for you!

Cathy  

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I'm into my 7th year fighting this beast.  Had external radiotherapy (60Gy over 6.5 weeks), surgery (debulking and sigmoid colostomy), chemo (6 cycles of carbo/taxol), hormone therapy (letrozole, then progesterone), Cyberknife (only recently - will scan in Jan to see if it has shrunk the tumour), more hormone therapy (currently on Tamoxifen)..............and so it goes on!

I find walking very helpful when the stresses and strains threaten to take over.  Nothing too energetic - we live by the sea where there is a very long flat promenade (several miles) so I walk and walk and walk some more.  I find the rythmn of walking is very soothing.  But I also try to live in the moment - whenever those little mind demons start to raise their heads, I say to myself "is this beast going to kill you today?  If not then don't let them spoil your day".  Oh - and chocolate - never underestimate the power of chocolate!  :-)

This wicked disease tries to play serious mind games with us - but I will not let it succeed, it has already taken too much from me and my nearest and dearest.

Kindest wishes

Helen 

ConnieSW
Posts: 1506
Joined: Jun 2012

I am going to adopt your motto.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I have been dealing with UPSC since Jan 09.  I had the initial sandwich treatment with Taxol/ Carbo and 28 external IMRT radiation treatments as well as 28 hour internal radiation.  I have never been NED ( no evidence of disease).  18 months after I finished my first round of treatments I had 3 cycles of Taxol/Carbo.  Had a severe reaction to Carbo so switched to Cisplatin.  Had 4 cycles of Taxol/Cisplatin.  I tried Arimidex, but it did not help me.  7 months after that treatment I had 6 more cycles of Taxol/Cisplatin.  If it would have been less than 6 months since my treatment I would be platinum resistant.

I started Aromasin in July 2012.  In Jan 2012 I developed bilateral lung clots.  I have been on daily blood thinner shots since then.

in Sept 2014 I had 10 Stereotactic Body Radiation Treatments ( like cyber knife).  My CA 125 has dropped from over 1500 to 508 since those treatments.  I will have a CAT scan in Jan. To see what has happened with that enlarged lymph node.  And to make sure no other nodes are enlarging.  I continue on the Aromasin.  So I have been on this journey much longer than you have.

you talk about working at a stressful job.  Have you checked into social security disability?  I went to a lawyer that specializes in disability.  Because of my diagnosis of 3-C UPSC I was approved.  They took it back to my abnormal PAP in October that was " highly suspicious for adenocarcinoma" For approval.  If you were able to get the disability, it would reduce your stress from your job.  You would also have more time and energy to do things you enjoyed.

i try to be around positive people and look at the ( half full) part of life.  I try to find joy in each day and be thankful for every day. My wonderful supportive husband has planned wonderful travels for us in between treatments.  We have had some great trips.

I hope you get some answers from your assays to find the right treatment for you.  In peace and caring.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

glad to hear from you.  I hope your pain is gone.  Did that radiation effect your colostomy?  I know when some others had the pelvic radiation it effected their bowels.  Will be anxious to hear what your CAT scan shows in Jan.  Do you have it scheduled yet?  Mine is Jan 2 nd, but do not see the doctor until Jan. 13.  I still don't know how the CAT scan will be different.   Still have a cough, but it is gradually getting less.  Hope you are enjoying each day.  In peace and caring.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Thanks for thinking of me.  Yes - the pain is completely gone.  I'm not sure if this is the effect of the Cyberknife, or the Tamoxifen, but, it is wonderful to be pain free for the first time since last Christmas.  The treatment didn't affect my colostomy, although I did feel quite nauseous during it and for a week or two afterwards - but that has gone now.  I saw my oncologist last week and she is going to arrange an MRI scan for mid January (we seem to use MRI more than CT in the UK - don't really understand why), but I don't have the date yet.  But I have been forewarned that because of the amount of scar tissue mixed up with the tumour, there may not be much shrinkage.  So if it stays the same or shrinks even slightly then that is considered a good result.

So we both continue to play the waiting game, don't we?  I am so pleased to hear that your cough is getting less - but it is such a long time to wait for the scans and the results.  I hope you can enjoy Thanksgiving and Christmas and "park" the worries about the scan and results until after the holiday season.  I guess the waiting and worrying are all part and parcel of our lives now.  But I hope that you, too, are enjoying each day and the warmth of the Florida sunsine is doing you a power of good.   The weather here in England is starting to turn quite cold and wintery.  No snow yet, but the mornings are very crisp and the trees are getting quite bare.  I love the changing seasons here and always hope that we will have a white Christmas, but I can only remember it a few times during my lifetime, so it's not very common!

With kindest wishes
Helen xx 

AWK
Posts: 364
Joined: Mar 2013

You all gave me the boost and encouragement I needed and continue to need!  I reached out to a therapist and had a good conversation about it all with my doctor and husband last week.  My newest round of scans (which I have been getting very six weeks because of the tumors on my heart and diaphragm) show continued stability with one of the tumors by my spine slightly reduced.  So the Avastin is still keeping things at bay and I am happy about that!  We also got back the genome test results and I tested positively for twenty different genetic cancer mutations.  The team hasn't seen anything like this, usually people hit on up to three or maybe four.  So that part of my journey continues.  There is a conf call the first week of December amongst the various doctors to talk about next steps. Given the number of hits the options aren't as clear as they were hoping for.  

We we also talked about my stress level which is concerning to all.  I am normally a pretty laidback, optimistic and joyous person.  So Dr. A talked about possibly writing me back out of work on state disability (I live in Calif.) in addition to the importance of working with a therapist and getting some sleep!  I know I can do this, just need the tools to help me with it.  And work wise I am going to find a way to either lighten the load or step back.  

In in the meantime, thanks to all of you I will stay focused on the positive, keep walking my dogs, stay open and eat a little bit of dark chocolate.  And enjoy my time here in Indiana for Thanksgiving with the In Laws!  

 

Happy Thanksgiving to all of you!  

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

HERE HERE TO CHOCOLATE!  I think I'll mention the necessity of a warm chocolate drip to be added to my chemo on the 7th.  I think we may be on to something ladies!   I'll let you know if it works!  

You all have a great day because we really only have today. Right!?

That statment above should really clue you in on how scared I am of starting chemo so I hope no one is offended by my over acting defense mechanisim, which is humor.  Holding on to all the thoughts all the ladies here have given me about it all being do-able. You girls rock!

Debbie

pipscout
Posts: 24
Joined: Jul 2010

Hello there,

It's always helpful to me to see people with mets who are hanging in there longer term. I was diagnosed with grade three adenocarcinoma in 2010, and did initial surgery, chemo and radiation. It metasticized to my abdominal wall in 2012. The prognosis is pretty poor (@ 20% five year survival rate). I've been doing various courses of chemo since 2012, never NED, but the mets haven't travelled much. Grow a little now and then, and we change regimens, and then they usually shrink a bit. This summer I had some new areas in the pelvis, but then it surprised us all when I was taking a chemo break (waiting to see if I could get into a clinical trial, but couldn't). Anyway, the tumors shrunk just being on a hormone, and the new areas resolved.  It's been great just taking the oral hormone these past few months - lots of hot flashes but that just makes me feel like all the other 50-something women out there.

After working through treatment for these few years, I decided to apply for social security disability, and did a disability retirement from work in July. I am so glad I did this! Even though I loved my work and they were supportive I feel so much more at ease, less stress, more comfortable pace of life and able to take advantage of times when I am feeling well. I have to be more careful about money, but the advantages are worth it.

I don't like to say that anything in particular I am doing is keeping me around. Many friends have done everything "right" and still had poor outcomes or passed away. Still, I notice that over time my life has included a lot of the suggestions in the book "Radical Remission". I eat much better nutritionally, and almost all organic, natural, local. Try to walk and enjoy nature as much as I can (very leisurely). I feel really grateful to have a good cancer support group and others with whom I can be authentic about all the feelings (not just the "stay positive" ones). I feel a lot more intentional about the activities and relationships I choose.

It also gave me tremendous peace of mind to get all my "end of life" paperwork in order...my friend who is a lawyer and helped me said she feels like it helps people live longer!

My daughters are grown but haven't yet started their own families. I would love to stick around long enough to play with a grandchild or two! It helps me to read what/how others are doing who are living with this past the odds.

Warmly, teresa

 

AWK
Posts: 364
Joined: Mar 2013

It is good to connect with all of you, this message board has been of much comfort and it has provided so much support.  My resolution for 2015 is to relax and enjoy life more.  I usually am that way but the past six months have been difficult and I have lost that.  But I am getting back on track.  We can do this!  Stay strong and thrive ladies!  Hugs. Anne

AWK
Posts: 364
Joined: Mar 2013

Hi ladies and I hope you are all enjoying the holidays.  Stability continues for me although now my urine includes proteins so I may have to take a treatment break.  I met with my doctor and I decided to start taking a low dose of Celexa which is an antidepressant.  Just 20mg per day; my husband says he can see the light in my eyes again and I am feeling like my old self.  Work wise we are still figuring that out with my employer.  We will see what happens there.  Thanks again for the encouraging words and advice.  It all really helped.

Wishing everyone.a Happy New Year!  Anne

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Hi Ann:

I was diagnosed in 2005, had a recurrence in 2010, and just this year I have been through many doctors to see what is going on all the while working, etc.   I do have to say, stress does come to play in a lot of it.   I never reallly went out much but I was usually active.   However, this past year was reallly rough as I was extremely tired, exhausted. Had severe headaches, halos around my left eye and other odds and ends.   It is hard when you are feeling that way to feel positive and smile.  I chugged along.  It is also hard when you go to a doctor and they say there's nothing wrong!

Also, sometimes if you look on facebook or other social media sites it seems that everyone is having a good time, doing things, etc., and here I am sitting around trying to get my butt off the chair to do something when I feel like """"".    As like many other posters say, its like a rollercoaster.   Also, watching the news can really bring a person down.    I found out that if you are tired, then rest (when you can).  There will be times that you can't.   I used to volunteer a lot and it was so hard to give it up but I just couldn't give it my all this past year and wow what a relief it was knowing that I wasn't responsible for that anymore!

I too have a great husband and family.  I do push myself to do things.   I still have a 6 cm soft tissue mass and I have to have stent surgery every three months until such time as I have major surgery to remove the mass or have a ureter by-pass surgery if the mass stays stable for a long period of time.    I just developed high blood pressure (not sure if its the result of my kidney issue) but I have to take medicines for it now but that is all I am taking.

Just so you know, there are times that I can't stand anyone and I will just go and shut my door and relax a bit.   I took up photograph hobby since I like weather I take a lot of sunrises and sunsets and try to take photos of storms, etc.   I have worked all my life to provide for my kids and now they are 20, 22 and 24 (still at home at the moment) but very self-sufficient now so my job as a mom is not like it used to be when they were very young.  It is different and I am adjusting to the new way and cherish every moment and as hard as it is watch them make mistakes but be there for them and guide them when I can.

Then talk about stress, my mom (81 years old) was just diagnosed with Stage IV breast cancer in October.  At the beginning of December she was in a car accident (she still drives) and six days later after picking up a rental vehicle, the rental vehicle malfunctioned and she was in another auto accident!   Then my husband backed his car out of the garage into my son's car and then the next day someone hit my son's car on the other side.  Wow!   So my husband took me to New York for a weekend December 17th.   As much as I didn't want to go so close to the holidays, it was just what I needed.

As crazy as it sounds, when it really gets bad, sometimes I look at my husband and we just have to laugh because it is so ridiculous.   It brings us back to what is really important. You, your husband and family.    

And the other alternative is to do what I just did! - VENT  - lol

Hang in their ANN!   May your New Year be happy, peaceful and healthy!

My best to you.

Kathy

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I have known wonderful, courageous and loving people in my lifetime, but I have to say few have been as much of an inspiration to me as you beautiful women. To name a few: Ro, Helen, Kathy, Debra, Trish, Connie, Jeanette and No Time. Each of you has been posting here for a while , sharing your heart-felt fears, longings, joys, disappointments and triumphs. I have often wondered in the last 14 months of my life how I could possibly travel this terribly personal journey alone; alone in that I didn't know anyone with uterine cancer to talk to. Do you remember the TV program "I Dream of Jeannie"? I sometimes wish that I could wiggle my nose and each of you will be blessed with great health. Ro, your lymph node would shrink to nothing and Kathy all your symptoms, the kidney problems, headaches and blurry vision would be a thing of the past. Helen, your symptoms would disappear as well. As I say goodbye to 2014-a rough year for sure- I can't help but count my blessings. and that includes the blessing of kindness you have shown me and the others on this board. Thank you, and may God bless each one of you.

 

Warmly,

Cathy xxx

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

What a wonderful thing to  say, Cathy!  Thank you for making me count my blessings! I didn't find   this group til I had finished EVERYTHING!  I just told my mother today how very different I would have felt{and acted!} had I had all these wonderful ladies here!  Many of them honestly "talked me off the ledge" more than once.  They truly saved my sanity!  I learned "Grace Underfire" from them.  I do remember "I Dream of Jeanie" and have thought what or who I could help if I had her nose!  We had a saying on here a few years ago that "we all wanted a "re do" button!  But since we can't, I'm thankful I have all of you...true friends that do know and care what you are going througt and WANT to help!  Thank you all for always being here...Happy, Healthy New Year!  Debrajo

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Well said, Cathy!

Now I am totally speechless!   Thank you Cathy for your kind words and wishes.

Once I get my thoughts back, I will respond - lol

So for now may you all have a happy, healthy and blessed New Year!

 

Kathy

P.S.   I will just leave you with this

Each (person's) life touches so many other lives.................

no (one) is a failure who has friends.

You see, it really is a Wonderful Life

(It's a Wonderful Life)

 

Thank you all for just "being there" for those times when I really needed to know someone was listening.

pinky104
Posts: 574
Joined: Feb 2013

It's not as bad as your story, but my son-in-law hit a deer two different times this year.  He had bought a newer car (2011 Subaru) from his mother a couple of months before the second accident, the newest car he'd ever owned.  Then, three weeks later, our daughter borrowed his newly fixed car to visit her brother who lives in the next state. Her husband took her old favorite Toyota (with 216,000 miles on it) to work and hit a guy in an intersection who had run a red light. Her car was totalled, and even with the insurance paying the full retail value of her car, it was well short of what she needed to buy another old car.  We had to help her out so she could get to her job as a teacher.  

I heard a story many years ago about a guy who got his car repaired after an accident.  He drove out of the car repair place and was hit again as he was pulling out.  At least he didn't have far to go to get it fixed.  Sometimes, if not for bad luck, there is no luck at all.

I wish you and your family much better luck in the new year.  Sounds like it can't get much worse, knock on wood. And to all on this site, a happy, healthy new year to you, too.

 

  

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Pinky,

Wow!  I will have to tell my mom so she will quit feeling bad about it and that this stuff really does happen to a lot of people.   The good thing is in both stories is no one got hurt.   After the fact it is laughable and unbelievable to say the least.   After all of that, I get this phone call from a number I don't recognize on my cell and I hear a voice say "mom".   Of course, my heart sank but it was only my son telling me that his cell phone battery died and he will be home shortly.   Scared that **** out of me!    

Anyway, thanks, Pinky.   Well wishes to you and your family too!

Happy New Year!

 

pinky104
Posts: 574
Joined: Feb 2013

I also heard a story from a co-worker once that'll make you laugh.  She had to call her insurance agency to report to them that her car had been hit by a horse and buggy.  We don't live in Amish country, and horses and buggies are seldom seen on the streets here.  When she called her insurance agency, the agent told her to hold on a minute while he put her voice over the company's loudspeaker to announce how her accident happened.  The agent said nobody at the agency would believe this report unless they heard it with their own ears.    

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