Frodolass Update...

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

frodolass said:

Thanks!

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!

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!

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

NoTimeForCancer said:

Sorry you have had to find us but we welcome you

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.

 

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 said:

Teaching

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

 

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!

Ro10 said:

Donna, thanks for checking in

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.

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!