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Frodolass Update...

frodolass
Posts: 29
Joined: Sep 2013

I also posted to the "long" thread which I read and found some great information. I just wanted to introduce myself. I'm 52 years-old and was diagnosed with UPSC with clear cell features in early August. I had a total abdominal hysterectomy with ovaries and fallopian tubes removed as well. I hadn't been to the doctor in a decade, but was having some weird bleeding and awful pain. It's the pain that finally got me to the ER where everything else followed. There was no cancer found in the lymph nodes or outside the uterus. I haven't yet been told my stage, but I was told today that the cancer had grown deeply into the wall of the uterus and that the cervix was also involved in some way. Sorry, I don't know all the medical jargon yet.

Today I met with the radiation oncologist and I will meet with the chemo guy on Monday. I know NOTHING about any of this. I feel completly overwhelmed and not really sure what's going on. The radiation doc said that I'd need 5.5 weeks of radiation to the pelvis and 3 weeks of vaginal something-or-other. This would be everyday for 8-9 weeks. We won't start radiation therapy until after I finish chemo.

What is the "typical" regimen for the chemo? They said something about every three weeks for four or five months. Would that be one visit every three weeks or several days every three weeks? I'm a teacher and am very anxious to get back to work.

Oh, and to add to the "fun," I was also just diagnosed with HBP and diabetes.

Thanks for reading. I'm scared and uninformed and it's driving me nuts :-)

Donna in North Florida

Kaleena's picture
Kaleena
Posts: 1022
Joined: Nov 2009

Dear Donna:

Sorry that you are in the position to look for this site.  However, you will find that this site is very useful and comforting.  It is only natural to feel scared.   However, please know that YOU are the one in control.  If you do not understand something, ASK.   If you still feel uncomfortable, seek a second opinion.   It is ok to do this and no doctor should ever make you feel that you shouldn't.

Prior to chemo, you may get several tests and scans.   A CT Scan for one, chest x-ray.   Also, they may suggest a port for the chemo.   I would definitely do this.  It will save your veins, especially if you are getting the first line of chemo, usually Taxol and Carboplatin.   The regimen seems the typical regimen.    I still worked (although limited), but it may be difficult because usually on the second or third day after chemo you can get extremely fatigue and/or nauseas.    I didn't get the pelvic radiation because I scar too much.  However, I did get the brachytherapy (vaginal radiation).   The only problem with this treatment is that is can be embarrassing at first, the treatment itself is nothing and really no instant side effects to really report.

Remember, any and all question(s) are important.    Don't think it is silly.   I was diagnosed at age 45 with Grade 2, Stage 3 endometrial adenocarcinoma after a "routine" total hysterectomy.    Just to let you know, that was 8 years ago this month!

Gather up as much information that you can.  Be aware, however, that stuff you find in cyber world is a lot of time inaccurate, old information, etc.   Stay on this site or the other site that some of the posters here list.  Remember, everyone is different and reacts differently to treatment.  The standard treatment is something that they base everything from.

My best to you.  

Kathy

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Sorry it has to be uder these circumstances but welcome to one of the best sites for information from the folks that have been in this cancer journey for awhile.  Not saying that we are medical drs but having been through some of the different treatments we know what helps and what does not help to get you through the treatmetns.

Trish in Dallas Texas 55 at DX Stage III C1 MMMT (carcinoma sarcoma 1A tumor in Uterus,  2 microscopic cells 1 lymph node) High Grade 3 cancer  so upgraded to stage 3c1.   Post-Menopausal in 1992 at age 36. In 2004 spotting had D& C everything clear.  Yearly Pap’s clear & normal and Colonoscopy in Sep 2010 clear and normal.

March 7, 2011 started flooding and intense pain. Went to gyn she performed another D&C with hsytoscopy March 25.  She (the gyn dr) said that it looked nasty in the uterus and that it was sent to pathology.  April 1, 2011 got the call from the dr that the pathology report was back and it was cancer.  She was scheduling an appointment Monday 4 April with gyn onc at the cancer center.  Dr. Jayanthi Lea at UT Southwestern Medical Center was a God send and remains my gyn onc doctor today.  She is patient and caring and takes time to explain everything.  Great dr so lucky she was chosen for me because I was clueless. April 8, total abdominal hysterectomy with everything removed including the omentum.  May 6, started carbo/taxol for 6 rounds, one every 21 days.  Dr said no radiation because she had removed it all so there was nothing to radiate, and would save that in case it comes back. I did ok on the treatments, went back to work, took off on treatment days. Last TX was 22 Aug 11, just celebrated 2 years no eveidnce of disease (NED). Only side effect was hair loss but it grew back. Still go to the Dr every 3 months for checkups and blood work CA 125 was 15 before surgery now down to 11-13 so do not think that CA is a good marker for me but still does the test. Found this site and have gained a lot of information and guidance from it.  keep everyone on this site and the whole ACS CSN Boards in my prayers.   I have a surgical hernia that I need to have taking care of but was told it can wait so I am waiting a bit longer maybe 2014 I will get it taken care of.  It is not bothering me so I will wait.

 

One thing I learned from all of this is to keep a positive attitude.  I went into this journey as OK, I have cancer, let’s take care of it, get it out, get the treatments and move on.  I found out that I was stronger than I thought I was.  Yes I had a few bad days but on the whole it was positive, even Dr Lea has been impressed with my attitude and tells me that every time she sees me.  I have changed some of my diet and exercise more and I do take supplements but mostly I just take every day, one day at a time.  Back at work full time and take off days to spend with my grandson and my family and friends.

Try to take time to just sit and breathe.  Stay off the Internet sites becasue that can freak you out when you read that stuff that is old and outdated.  You are your own statistic of one.  My cancer and treatment is different than what you have and will go through.  Take one day at a time and try to stay calm.  You are in my prayers now. trish

 

 

 

 

 

Ro10's picture
Ro10
Posts: 1363
Joined: Jan 2009

Sorry you have to join this journey with us.  Like Kaleena suggested getting a port is ver important.  I did not get one at first and the chemo destroyed my veins.  They still have not recovered.   I too had the chemo of taxol/ carboplatin.  The chemo is given every 3 weeks.   Most people can get both drugs in one day.   Usually initial chemo regime is 6 treatments.   Some have had more.  They will check your lab work befor each treatment to see how you respond to the chemo and also see if you can receive chemo.

I had the external radiation - 28 treatments.   Yes you do go everyday for the radiation, Monday through Friday.  But after your initial appointment, each treatment is less than 10 minutes.  Like Kaleena said it is not painful, you just feel embarrassed.   But the technicians were all professional.  I then had a 28 hour internal radiation.  

With being a teacher, I don't know if it would be recommended for you to be around your students every day.  It will depend on how your blood counts do.  You need to protect yourself from infections.  I know as a teacher you can be exposed to many germs.  You will need to see how you tolerate the chemo.

i am sure you feel overwhelmed and anxious.   We can all appreciate those feelings.  Come back with any questions you may have.  Or feel free to come and vent.  We are pretty good listeners and will empathize with your feelings.  

Again, sorry you have to join us, but glad you found this site.  I also read the Ovarian Board as UPSC is very much like ovarian cancer.  Take a deep breath and take one day at a time.  In peace and caring.

frodolass
Posts: 29
Joined: Sep 2013

Thank you so much for making me feel welcome! I'm very excited to find you all and have learned so much just by reading. You guys are awesome!

Ann55
Posts: 42
Joined: Jun 2013

I am also diagnosed with UPSC and my treatment will be running alittle ahead of yours.I was diagnosed the end of April of this year.I've completed the surgery and first round of chemo and am in the 2nd week of external radiation.The treatment plan for me is chemo once every 3 weeks for 3 times,28 external radiation treatments with 3 internal radiation treatments in the middle and then repeat the same chemo cycle. I am a nurse and chose not to work during treatment since treatment compremises the immune system plus I am 57 and was planning to retire soon anyway. I won't tell you this is on my list of favorite things but is do-able.Good luck to you and I'll try to answer any questions you have since I'm going to be going to the treatments first!

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

So with name frodo lass you must be a tolkien fan? trish

ConnieSW's picture
ConnieSW
Posts: 545
Joined: Jun 2012

If ya gotta have cancer, this is a great group to hang out with.  This site has been invaluable to me.

frodolass
Posts: 29
Joined: Sep 2013

I love LOTR...books and movies :-)

SettledSue
Posts: 18
Joined: May 2012

I am in the middle of the every day external radiation treatments. If your internal treatments are like mine they will only be once a week for 3 or 4 weeks. You have come to the right place to get lots of information. Sue

 

 

 

frodolass
Posts: 29
Joined: Sep 2013

I've been reading and it does seem that the internal treatments are not every day. I would be very happy with that. Thank you!

NoTimeForCancer
Posts: 412
Joined: Mar 2013

Donna,

I think eveyone here has caught you up, but there are lots of others out here who are ready to chirp in to help too.  I had UPSC like you, and while I was getting the chemo I limited my interaction with people because my immune system was weakened from the drugs and even hung a sign on my door that said something to the effect, "If you sick, think you are sick, or were just sick, please do not enter."  Sounds harsh, but I was trying to protect myself.  I didn't want anything to interfere with my treatment and recovery. 

A very surprising fact I learned was the Taxol/Carboplatin chemo, and the ladies here will confirm,  it is constipating!  Miralax is good stuff, as I heard one  woman say in the chemo room, "Miralax is a miracle!"  So if your chemo nurse didn't tell you that you may want to ask. 

Please feel free to ask this group anything!  They are generous with their knowledge and experience.  While everyone responds differently to treatment, they will give it to you straight.

 

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

Hi Donna,

Thought I'd chime in and tell you about my experience. I'm also a teacher, and was diagnosed with UPSC in June 2011. My hysterectomy was in mid June, so I was allowed ample time to recover from that over the summer.

I asked my doctor if she thought I could work while going through chemo. This is my second primary cancer, (first one was in 2007 and I've recovered completely from that one) so my doctor knows me well. Her response was "everything I know about you tells me you're a teacher who loves her job. My recommendation is that you keep teaching. You'll get the support you need from your coworkers, and it will keep your mind off of you, and dwelling on your cancer."

I'm so glad I kept teaching. She was so right........this was the right thing for me. The support I received from work was overwhelming. My very own sister, a retired teacher, became my sub for all of my treatments. My school nurse told me that if any of my students even complained of a headache, to send them directly to her so she could take their temp and keep them in the clinic if necessary. 

I sprayed clorox cleanser on their desks every day, and my students scrubbed their desks daily. In my room alone, students contracted stomach viruses, strep throat, the flu, and various other colds and small illnesses. My coworkers were also getting sick and taking days off. I never caught anything!! My doctor and I would laugh about it when I had my checkups........everyone getting sick except the chemo lady!!

I think it depends on your prior health (I've never been sick except cancer.....ha!) and you have to be diligent about taking care of yourself at work and at home. My husband pampered me and took care of everything at home......even cooking and cleaning.

I had chemo on Thursday and took off Friday's and had the weekend to recover. The last two chemos when my resistance was the lowest, I took off Thursday, Friday, Monday and Tuesday, which gave me 6 full days at home. My principal, coworkers, students and parents were terrific.......I was prayed for and spoiled while at work. (surprise Starbuck coffee, treats, etc.) 

So I think it depends on you and your general health, your situation at work, and whether or not you actually WANT to work. My doctor told me that most of her teacher patients hate their jobs and are constantly complaining about it. I actually LOVE my job, and think it's a large part due to the people I work with. I've been at the same school for 17 years and have siblings of students I've already taught, so know the families already. I even had a former student of mine (I teach 5th grade) grow up and become a teacher......and she now teaches at my school!! Our principal was a former 4th grade teacher and also had this student in her classroom.

Soooooooooo, this is my viewpoint. If you like your job, want to keep teaching through chemo and will have support from your coworkers, it is possible. Hope this helps.

Hugs!

 

frodolass
Posts: 29
Joined: Sep 2013

I want to get back to work so badly! I've already missed the first five weeks at school. I haven't even met my new students yet. It is SO hard to not be there. Your post gives me some hope that I may be able to work. I haven't been cleared by my gyn. onc. to go back yet after my surgery and I thought I'd wait until I had the first chemo (if they would HURRY up with it) to see  how I react to the treatment.

I love my school. Even though I'm older, this is only my third year teaching. I was a one-on-one aide to students with disabilities before I earned my teaching certification. My school has been fantastic! They've made sure I had everything I needed. They have donated hundreds of hours of sick leave so that I can take as much time as I need before coming back to work. The students recently held a fund raiser for me which helped with some of my medical bills. They are all awesome and I miss them so much. I stopped by the school the other day and the kids were so happy to see me, it made me cry.

Thank you so much for your post. It is really helpful.

Thanks also to all who have responded to me. I appreciate it more than you can know.

Donna

 

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

It sounds like  you're in an incredible place! I believe that working for me was therapeutic and probably would be for you, too. If you DO decide to return to work, could you line up a reliable sub beforehand for all your treatments? It was important for me to know my students would be in good hands during my absence.That alone took a huge load off my mind. 

I had my first chemo in the summer before classes started, so it was a relief to have one behind me. For me, the fear of chemo was much greater than the reality of it. I know that everyone reacts differently to it. I also knew that if my blood counts went too low, chemo would have to be postponed. Thankfully, that never happened.

It sounds like you've been through a lot (teaching and going to school) to get your teaching certificate. That same drive will help you get through this!

When is your first chemo? You're probably having 6 sessions of Taxol/Carboplatin delivered every three weeks. That's what I had and most of the women here had. You WILL lose your hair, so I suggest going ahead and getting a wig or scarves ahead of time. It's a shock to lose your hair, but remember.....it grows back and will eventually become a distant memory. Mine is back and has returned to it's previous texture and is probably thicker than it was before. 

I know how difficult this decision is. Being a teacher you want to prepare for everything, and one thing I've learned through all this is there is not a whole lot you can really plan for. Life takes us in unexpected directions that you could never plan for. I had to go one day at a time, marking all my chemos on the calendar and simply focusing on getting it over with.   My faith is very important to me, and I leaned heavily on my faith during this time, and still do. Somehow, I got through, and so will you!

Come here with any questions or concerns......there are wonderful women here ready to help you get through this!

Sending big calming hugs to you from Texas!

 

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

We have all been 'newbies' and been welcomed by this group of wonderful clever women, well I am not as clever as the rest.

Seriously, Buckle up and welcome to the ride of your life, your attitude will reign and that with the sage advice of the sister warriorettes tempered by the Docs, will do you service.

i have been busy with our holidays this past few weeks, even now we are in the midst of them till the end of September. Exciting to be alive and functioning for another year when the naysayers abounded three years ago, I have Stage IvB Grade III Adenocarcinoma Clear and Mixed Cell, not a great situation, but with the help of God and support of my family and Warriorettes, here to fight another day.

Best wishes to you as well,

Sara

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi Donna and welcome to the club.  I am Debra from Texas and I am UPSC also.  You are very lucky to have found this group at the beginning of the journey!  I found them after everything was over including chemo and radiation    It would have been so much easier for me than to face the unknown all alone!  I am at M. D. Anderson in Houston and If I can help just let me know.  By the way, if all is ok in Nov.  I will be three and one half years with NED.  Do so love that NED!  LOL  Debra  

SUNGRANNY
Posts: 74
Joined: Dec 2012

Greetings from No Carolina.  By now you must be into the chemo phase.  I too was diagnosed with UPSC - stage 4 in my case due to the extent of spread, including lymph nodes that couldn't be removed.  Besides the surgery, chemo, and radiation I worked with visualization, nutrition, exercise, acupuncture.  I took listened to guided visualization for a few nights before each treatment, as well as in the treatment room. I am certain that this was a big help in shrinking and eliminating the cancer cells with,minimal damage to my healthy cells, and the NED CT results.  I know it isn't for everyone, but worked for me.  

This website and the wonderful contributors is an invaluable resource on the cancer survivor road.

frodolass
Posts: 29
Joined: Sep 2013

Hi all! It's been a while since I've checked in.

I finished up the first go round of chemo with Cisplatin and with the external and brachy radiation treatments. Not too many side effects. Feel really good. Had another CT scan last week and the only abnormal stuff was: "The left periaortic lymphadenopathy appears stable compared to the prior exam. Probable lymphoceles in the pelvis bilaterally decreased in size since the prior exam." Knew about the lymphoceles, but don't remember any discussion about the "left periaortic lymphadenopathy." Not sure what that is, but have an appointment 01/09, so I guess they'll explain it then.

I start carbo/taxol on 01/09 and am a little nervous about it. I've gone back to work and I really don't want to get sick, but I'm a tough cookie and I can handle it. One big issue is that the chemo doc doesn't want to do the chemo without my having a Neulasta injection 24 hours after chemo. I can't afford the co-pay for the Neulasta, so not sure what's going to happen there. The drug company has a program to cover the cost of the deductible/co-pay, but not if it's self-administered and the chemo people won't do it any other way. It's so idiotic.

I do come and read and hope all is well. Thanks for your support!

Donna in N. FL.

Ro10's picture
Ro10
Posts: 1363
Joined: Jan 2009

It is good to hear from you.  Glad you made it through the first part of chemo and through the radiation.    That means you are more than half way through the treatment.  Glad you are able to teach again.  

Sorry to hear about your problems with the Nuelasta shots. I am surprised the chemo center let's you give your own shots.  Most everyone has to go back the next day to get the shot, if they need it.  Have you discussed the problem of co-pay assistance with the chemo center?  If the chemo center is closed maybe you could go to the ER to get the shot.  I would talk with a social worker if you chemo center has one.

continue to take it one day at a time and find some joy in each day.  In peace and caring.

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

Hi Donna,

Good to hear from you........it sounds as if you're doing well for the most part. Glad you're getting this behind you and still feeling well enough to work. It sure helped me to keep going, and then you have the summer to collapse and think about what you've been through. lol!

I don't know anything about the neulasta shot because I never needed one. My blood counts stayed within the right range even though my 5th chemo counts were exactly on the border line. One tiny bit lower and I would have needed the shot.....but it didn't happen.  

Does your doctor prescribe neulasta as a precaution without waiting to see what your blood counts will be? 

It sounds like Ro has some pretty good advice....maybe you can have the shot administered in the ER, or talk to the chemo center for another option for you. Sometimes you have to be a squeaky wheel. 

Glad you're getting through this.......have a Happy New Year!

Cheers to you from Houston!

frodolass
Posts: 29
Joined: Sep 2013

The doctor said that I couldn't get the chemo without getting the Neulasta. I would rather get chemo and then see if I need it for the next round. I had 6 rounds of Cisplatin and my blood counts were fine. It's been about two months since I finished up the Cisplatin. I'm hoping they will go ahead and let me get the first chemo treatment. I got an answer from the insurance company about the Neulasta. It's covered, but I have to come up with over $2,000 for the co-pay. That's more than I bring home in a month. I just can't do it.

Thanks for the responses. I'm so glad to know that you all are here when I need to vent.

Donna in N. FL.

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

That's outrageous about having to come up with a $2,000 copay when you may not even need that shot. I would definitely pursue answers and other avenues, even though  at this point I have no idea what those would be. 

Is that the policy of all the doctors in this cancer center, or only your particular doctor? 

I would at the very least talk to him and see if he can explain his reasoning behind this and see what he can offer you as far as paying for it. 

Certainly you're not the only patient of his who has encountered this issue before. 

Besides talking to a social worker at the cancer center, maybe the American Cancer Society could offer some assistance. I remember when I first came down with cancer I called them and they told me to contact them if I had trouble coming up with copayments. 

I'm sure hoping you can get this resolved before your next chemo.  

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